The Joy of Autism

Day Turning Into Night

2008-10-07T06:25:00.001-05:00

who are you, little i

(five or six years old)
peering from some high

window; at the gold

of November sunset

(and feeling that
if day has to become night

this is a beautiful way)

-ee cummings

The Joy of Autism: Michelle Dawson Wins Her Case

2008-10-05T13:38:00.000-05:00

The Joy of Autism: Michelle Dawson Wins Her Case

Michelle Dawson Wins Her Case

2008-10-05T08:46:00.001-05:00

Read the PDF Long Version Here.:

[242] Be this as it may, the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee’s condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.

[243] An autistic person should expect that his workplace be free of any misperception or misconception about his condition. It goes to the right of autistic individuals to be treated equally, with dignity and respect, free of any discrimination or harassment related to their condition. In this respect, in a society where human rights are paramount, an employer has the duty to dispel such misconception or misperception about such individuals.

[244] This duty stems from the Canadian Human Rights Act and the need to get rid of any discriminatory behavior in the workplace as well as in society in general. It is worth reminding employers as well as society as a whole that the purpose of the Canadian Human Rights Act, as stated in section 2 of the Act, is to give effect to the principle that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted.

[245] Autistic people, if they want to be able to accomplish themselves in a workplace or in society, need to be reassured that everything possible short of undue hardship will be done in order to ensure that misperceptions and misconceptions about their condition are properly handled by their employer, so that co-workers have a proper understanding of their condition and are not inclined to discriminate against them or harass them.

[246] To discriminate on the basis of somebody’s physical appearance or social behavior might be one of the cruelest forms of discrimination. Here, Ms. Dawson was seen or perceived, at one point in her career at Canada Post, to be a threat to her co-workers because she had self-injured in the past, not because she had assaulted colleagues. She was later on perceived as a form of nuisance because she insisted on obtaining rational responses to her queries and never backed down. The fact of the matter is that Ms. Dawson was, until her diagnosis became officially known to Canada Post in 1999, seen as an excellent employee.

[247] The Tribunal is of the opinion, in view of the evidence, that the Respondent needs to review its policies in relation to discrimination and harassment and put in place educational programs that will sensitize its employees as well as management to the needs of disabled individuals in the workplace, notably autistic individuals, so that individuals such as Ms. Dawson will not have to suffer from a lack of knowledge and understanding of their condition. In this respect, given the Canadian Human Rights Commission’s expertise in these matters, the latter can surely provide assistance, which should be welcomed, to the Respondent.

----

From Adam and I -- thank you, Michelle, for never backing down.

More Thoughts on Inclusion

2008-10-03T11:24:00.026-05:00

Untitled from CS on Vimeo.

This video raises some very important points.

Once in a while, those who have expressed interest in inclusion have asked for my ideas. In this post, I am not representing anyone, although I might express myself as having shared some stories and experiences with other families and friends of mine with disabled children. This post is a sort of life as WE know it version of why "inclusion" is really important to our family. What do we mean by it?

Just this week, I had been told another story by a mother of a 16 year son with autism that his public "inclusive" school (which name I cannot divulge) continues to do the following (please notice "inclusion" is therefore represented in quotation marks for a reason):

- continues to bus disabled kids in and out before anyone can "see" them;
- silently condones cyber-bullying of disabled kids and enforces a double standard (not okay for "normal" kids but okay to bully autistic and other disabled kids on YouTube);
- puts paper over the windows of "special ed" windows so no one has to look at them (in the name of 'kids might get distracted');
- limits number of deaf students for ASL teaching (which by the way from the deaf community, should be, as the deaf community has advocated for years, opened up to everyone as we would French, Hebrew or whatever -- learning ASL as second, third language).

Also, this boy, because he is autistic, was assumed in his neighbourhood to be a suspect in a series of recent assaults. His mother (who is a fellow grad student of mine at York U), was one of the first to be contacted by police. Therefore, it is generally assumed, due to historic pathologizing of disability, and media anaesthetising of the public with that myth, that autistic people are generally "aggressive perpetrators." In truth, the boy does not go out at night, dislikes the touch of others due to his sensory challenges, and can't wear the wool hat the suspect wears because like many autistic people, he cannot stand wearing anything on his head.

Inclusion and acceptance are not fictional, but all it takes is a look at that example, among so many others, to make you think so. That school does not demonstrate real inclusion and it is with such examples on which we must reflect. These are fictions, not realities and we must ask why. As families and fellow disabled citizens, we need real acceptance and inclusion badly. As a grad student of Critical Disability Studies myself, I can tell you that we have a lot of work to do.

As for my son Adam, as a mother I have to ask the following:

- what are the chances that he becomes the victim of such accusations and bullying when he turns 16? and,
- what will our choices be in his lifetime -- for high school, university, friends, and other programs where, it seems, we have to justify his right to participate almost every day??

Thankfully, his experiences at his current school have been exceptional. I don't know of any other school who would have accepted him and allowed him to grow as he is, and he continues to do well. The children who know Adam so far, accept him for who he is and at Day Camp this year, he was deemed the "most popular kid" by counsellors and "typical" peers. Just think -- a non verbal kid (one who does not always "look you in the eye") the "most popular kid." Continue to imagine...

Outside of these worlds, however, and for families who do not have the same access, it seems we have too few choices. Adam is often barred from participating in many weekend programs because he requires an assistant, even though he does perfectly well with support. Instead, mom has to go in and explain, and be the best diplomat and teacher in the world! Certainly an exaggeration, but I wonder if other families can imagine what that is like? There are most certainly families who are confronted with more difficulties in this regard, who do not have the resources, energy or resolve. While it's exhausting, however, I will not stop. As a family, we simply want the understanding and access. We want to be connected with our community! We feel it is ours, and Adam's, right.

It's usually expected by us to make the first move when it comes to having friends or asking ourselves "in" to play with other kids -- although for the very first time this year, Adam received two invitations from camp peers directly by telephone (not from parents). Imagine: the first time in his six years upon this earth. But I'm preaching to the choir on this blog. Many of you can imagine.

You should have seen the smile upon Adam's face when he got to communicate with his friends on the phone (even though speech is VERY difficult for him and was prompted by me). I don't mean that to sound accusative or pitiful. No! In fact, we were absolutely ecstatic. I use the example to show how things have been for many disabled individuals throughout history, and still, the way things are. Families like ours have to take the initiative, and we, in turn, feel we are imposing upon the favour of others. It's a very difficult dynamic, and I am committed to the positive evolution of diversity -- what that embodies -- and the relationships that grow from mutual effort. How can we learn from each other and what is it that we MUST learn?

We still have a lot of work to do to bridge the gap of understanding. To understand our thinking, here's an example from 1939:

"[Talcott] Parsons adopts a relativistic stance [in disability history thinking in 1939]: no matter how incapacitated one is by chronic illness or other impairment, one's social duties and obligations remain the same of the acutely ill. One must place oneself in the hands of medical professionals, follow their illness management regimens and seek to maximise health and capacity so that contributions to the functioning of the social system are made, in whatever way possible." (Carol Thomas, Theories and Traditions in Medical Sociology: Illness and Disability As Social Deviance, 2007.)

In other words, it is Adam's responsibility (and mine, it seems, as his parent) to "fix the problem," namely to "fix" or "cure" Adam, or at least to "make him better" [than he is]. That is, according to Parsons, our sole obligation. That was in 1939. Has it changed much today?

This is about our discomfort in being with disabled people (I include myself as one who needs to reflect on my own behaviour and response to disability). Yet, we are all just people in need of one another. We have to understand where our thinking about disability has come from as much as we have to ask about bias and prejudice towards any race or community! I ask myself this: Is the weight of being "normal" in order to participate or just be with others all on Adam, who already finds it difficult to be exactly like others, or do we as friends and family also reciprocate with our real love and desire to be with him the way he is, and perhaps to learn how he learns, how he views the world, and how he wants to be with us?

True reciprocity is molding ourselves to each other. We can begin by putting our children together in many different environments. Imagine what the world would look like in twenty years time if we do?

We have statistics which state that by including all students, we nurture a better society and all students perform better academically. Michael Berube a literary professor, who has done his research in his book Life As We Know It: A Father, A Family and an Exceptional Child writes:

"From what I've seen, very few of the political opponents to inclusion have done any real homework on the matter. The debate so far offers less evidence of the dumbing down of public education than of the dumbing down of right-wing cultural criticism..."

"...like the Patrick O'Hearn School in Boston, whose principal Bill Henderson, is both brilliant and blind, are proud to report that because of inclusion, their non-disabled students have not only become socially and psychologically mature but have registered better test scores in their 'traditional' areas (verbal and mathematical) as well."

As I wrote in my essay which is in the book Concepts of Normalcy: The Autistic and Typical Spectrum, written by Wendy Lawson and published this year, we actually have to show how non-disabled peers benefit from being with their disabled peers. It's onerous and unfair, but true at this point in time. Just as much as we are negating research that pathologizes autism and learning, we have to do the same in advancing inclusion.

Segregation, for all kinds of reasons, is dangerous. While we all want choices on where we want to go to school and the kinds of education available to us, we most definitely need to change our attitudes.

... after a year of full integration in a Saline, Michigan, school district, the percentage of teachers who agreed with the proposition that inclusion is unfair to 'regular' kids dropped from eighty to twelve, and that, as researcher Richard Schattman reports, several 'regular' teachers in inclusive schools find 'they already had children in their classes with more challenging academic, social and behavioral needs' than disabled kids assigned to their classrooms by inclusive policies....

...the statistic about teacher expectations is a telling one, since everyone knows that primary school education rests heavily on an economy of self-fulfilling prophecies: Children tend to do better when their teachers expect them to do better.."

"....Dickensian administrators and politicians... cut costs by eliminating special education and 'dumping' disabled children into regular classrooms without providing aides and therapists who can make inclusion meaningful." (Berube pp. 204-207).

Putting disabled and non-disabled populations together isn't a "dumbing down" of education as most people assume, and we have to work hard towards deconstructing those long-held myths. We also begin by scrutinizing every message we put out there about a disability:

- Is a disabled person speaking for themselves or is someone speaking "for" them? -- in our promotional videos, at an event for a centre, or school, on policy committees regarding inclusion, or disability and on school boards and at every community level?;

- If we are not doing the above, what myth about "incompetence" and disability does this send to a public that does not yet understand disability?

- How does that effect our work towards inclusion?

Disability isn't a dirty word like it used to be. Parents were once made to feel ashamed of having disabled children and those children, later turned adults, were treated like prisoners in institutions. Having an assistant or an aide in order to live life isn't a bad thing either. In fact, many "groups" of disabled people, be they from the Downs, Deaf, Cerebral Palsy, Autistic or whatever communities, have modeled disability "pride" after the gay pride movement in response to a society that finds disability to be "a bad or unfortunate state." I must say that I am especially proud of Adam. Not because he is "overcoming autism." I am simply proud of him as a person as would most parents be of any child. Every one of his accomplishments excites me beyond measure!! I am not ashamed of his label, although his label doesn't effectively describe him as a person in a world that doesn't understand the complexities of, and problems with, labels and how they relate to hierarchies of people, and thus lead to oppression of others.

"Autistic Pride," is a method in order that others understand how autistic and in fact, other disabled people are not granted the same rights and privileges as the rest of our society's members. That might be one measure we might use when responding to the needs of disabled individuals: would I have done that, or treated that person in that way, if the person was NOT disabled??

Adam may or may not need an assistant for the rest of his life, as do many other individuals. To build therapies in the name of "cost-reduction" by eradicating those assistants and special accommodations is very dangerous to him and other disabled individuals. Denying disability, in turn, usually done in order to find our own comfort zone with someone who is disabled by a kind of "reductionism of person" -- in other words, finding social dissonances or similarities -- can be another form of non acceptance. (Fred Davis, Deviance Disavowal: The Mismanagement Of Strained Interaction By the Visibly Handicapped, 1961)

Yet, in contrast, if you look at the attached article from the Harvard Business Review, some employers in our day are actually figuring out what autistic people have to offer, if only accommodated. Just imagine what this means if we all made such an effort? (See below)

Segregating education by regular, gifted and special enforces the myth that those classifications among humans are real -- that they fully describe people's ability to learn, or their intelligence levels. We all know that lines in the area of learning and intelligence always cross -- so say Deidre Lovecky and Mel Levine, Howard Gardener, among others.

Some disabled people demonstrate "gifted" tendencies in some areas, and "gifted" children may have issues when it comes to behaviour and anxiety -- and so another "label" is attached to them. Such classifications as "gifted," and those heightened expectations from parents and others that go along with that, often renders those students with documented psychological stress. I use these two examples because they, in the public psyche, demonstrate the myth of extremes between "special" and "gifted." By no means am I suggested that all people, no matter what fabric, are "gifted," but rather, to illustrate the great haze in understanding regarding the way people learn.

Guess also where investors invest their money? Which students are deemed the bright and shining hope for the future? No wonder the disabled are among some of the poorest in our society. We have not made space in our minds, hearts and classrooms, for children to participate and respond in ways in which they can.

Are we capable of imagining the alternatives? The possibilities?

Entrepreneur Thorkil Sonne on what you can learn from employees with autism

A Conversation with Thorkil Sonne by Susan Donovan (Harvard Business Review, September 2008.)

Four years ago Thorkil Sonne realized that his young autistic son possessed an extraordinary memory and a remarkable eye for detail. Those traits are prevalent among people with autism, and Sonne saw an opportunity to help individuals with the disorder find productive employment. As the technical director of a Danish software venture, he knew those qualities were critical in software testers. So he went out on his own and launched Specialisterne, a Copenhagen-based software-testing firm that now has 51 employees, including 37 with autism, and revenues of $2 million.

You started your company to improve the lives of people with autism. Why not just create a nonprofit focused on research or job training?

I wanted to do more than just provide a sheltered workplace for people with a disability. My goal is to create opportunities for people with autism on an international scale. You might find money to support sheltered working environments in Scandinavia but not in Poland or Spain or Brazil. To extend its reach, our organization needs the kind of funding that only a profit-making venture can generate. It must succeed on market terms.

Is it hard to reconcile two missions—serving customers and aiding people with a disability?

We’re constantly asked whether we support customers or a cause. We want to do both, of course, but we’re always fighting against the suspicion that we’re just a charity. Our corporate social responsibility profile might open doors with CEOs, but executives in charge of software testing aren’t evaluated on CSR, only on getting the most for the company’s money. To wipe away their suspicions, we must exceed performance expectations every time.

All our business comes from the private sector. Because Denmark has no tradition of social enterprises, the government doesn’t earmark contracts for companies like ours or give them tax breaks. We have to compete head on.

How does managing autistic workers differ from managing other people?

Most of our consultants with autism have a mild form called Asperger’s and are high functioning. Still, because they’re often hypersensitive to noise, they can be uncomfortable in open-concept office spaces without doors or walls. They also have trouble working in teams and understanding social cues, such as gestures, facial expressions, and tone of voice. You have to be precise and direct with them, be very specific about your expectations, and avoid sarcasm and nonverbal communication. Though we expect employees to do their jobs well, we don’t ask them to excel socially or to interact all the time with others. We just find them the right role. That takes tremendous stress off them. I think normality is whatever the majority decides it will be, and in our company people with autism are the norm.

----
"
I hope that article's closing lines doesn't feed into an "advocacy" movement that insists on maintaining hierarchies for political reasons. Adam is by no means with Aspergers, yet, like most autistic people, has much to offer if only given the opportunity. Perhaps a few non verbal autistic people in university (or not) can help us dispose of the myths of hierarchies and intelligence and contributions.

Of course, it takes work to make space in our imaginations in order to create such opportunities.

Poverty, Disability and Exclusion

2008-09-26T15:45:00.002-05:00

From inclusion-international.org

Questions for Candidates Regarding Inclusion

2008-09-24T08:22:00.003-05:00

Go to www.endexclusion.ca for more information.

Webby Talents

2008-09-24T07:31:00.004-05:00

It is an Invitation for disabled people and those who wishes
to share informations, events, arts, testimonies and even fun across the world.

WebbyTalents, a new video site networking for disabled people launched … is going international.

WebbyTalents is a Free video hosting designed to break down barriers for the world's disabled.

WebbyTalents is a site of talent and entertainment.
It is also the space for exchange, and sharing for people with disabilities.

Disabled people, Artists, Performers,
We want you to share your abilities moments.

Filmmakers, Organizations or Associations, from anywhere in the world, are also invited
to upload for FREE their videos or trailers on www.webbytalents.com.

Many thanks for your contents and participation.

team@webbytalents.com
www.webbytalents.com

Society As A Human Product

2008-09-23T12:37:00.002-05:00

We can say something important about someone with frightening economy. Like a swift brushstroke, a word or a label can define a person quickly in our society. Educators, therapists, clinicians and the medical community do this all the time in the name of educating, placing and servicing individuals with special needs “appropriately.” Appropriateness, of course, is a construction. What does it mean to act or behave appropriately in order to fit in, and who is making those decisions? More importantly, who is excluded from participating in many facets of society if one cannot participate within the confines of “social appropriateness?" In other words, who is making up the terms, the methods and the definitions? Who has the power? Who lacks the agency?

In the essays by Harlan Lane, Construction of Deafness and Peter Berger and Thomas Luckmann, Society as a Human Product, they both build cases upon which we can view how we have altered our views of deaf and other groups (or one might say “classifications” of human beings) which has resulted in the institutions and services we build around them, for such classifications are constructed for the purposes of general segregation and treatment.

Those institutions and services which appear to later generations as opaque (in other words, in existence for such a long time that the construct appears to be “just the way things are” (Berger, Luckmann)), were created as a result of turning ways of being human into social and medical problems. Those problems needed laws, budgetary provisions and workers. (Lane) Once the construction of policies, laws and services is initiated, there emerges an economic and political control and power over others. It would be naïve to suggest that our economic system is immoral, however, the nature of competition, and the “self-aggrandizement of the troubled-persons professions” (Lane, p.81) creates this tension between those using the service and those providing it. It leaves those so-called “troubled persons,” (Lane) in “need of help” and fixing. They are often called “clients” – consumers of the treatment or product and are then left out of the decision making process about their own lives, for it might meddle with the marketing model or render the construction, as it stands (patient-professional dynamic) obsolete. While today many institutions are no longer in existence, we still have an established patient-client service community as well as centres which segregate and often attempt to correct the behaviour or “performance,” of the disabled individual. Once placed in a centre, autonomy over one’s life is thwarted in order to comply with the order of things.

“Institutions always have a history, of which they are products,” say Bergman and Luckmann. “It is impossible to understand an institution adequately without an understanding of the historical process in which it was produced.” It is rather sinister to view ourselves as products and constructions. Yet, the commodifcation of human beings happens every day, on every level, from race to gender to disability, so sinister it is. What we think of ourselves as well as others, is the product we become continue Berger and Luckmann who state,

1. Society is a human product;
2. Society is an objective reality;
3. Man is a social product.

At least, the authors suggest, in the context of the institutional world (we must remember their article is written in 1966), it is experienced as an objective reality because the institution was in existence before the individual belonging to it was born.

If we are the product of our own making, we have to assume that we can change the way we look, treat and regard ourselves and others as well as our social “issues.” To think of humans as a product of social construction, one only needs these days to look at the targeting of the autistic community as a people suffering from an “epidemic” rather than a culture of people who have existed since the dawn of mankind. The construction of this unproven and unsubstantiated epidemic has sparked a deluge of autism service-providers, schools, drugs and educational products sold to parents who have been told that they can “fix” or “cure” their autistic child. In fact, many parents are made to feel socially irresponsible if they don’t try. In the context of Bergman and Luckmann’s argument, how might an autistic child view him or herself in such a world that doesn’t accept autism? What of their objective reality as they experience it?

It also helps us to look to other communities to witness how easily reality can shift. Lane recalls the historic attitudes and treatment of alcoholics and homosexuals to compare the dichotomous attitudes within and without of the deaf community. He illustrates the way we have changed the view of alcoholics as those who victimized their families in the era of the Temperance Movement to today as people who have a “disease,” and as such, we have constructed various hospitals, programs and treatments as well as raising money for research. One might conclude that the medicalization of nearly everything from disability, to various “isms,” to a woman’s natural biology – PMS to menopause -- are now medical problems in need of “treatment,” drugs, and support groups.

Homosexuality was once a “problem owned by the church” (Lane p. 79). We know that our recent history has viewed homosexuality as a psychiatric disorder and was listed in he Diagnostic Statistical Manual. Recently, due to pride movements and the “coming out” of the gay community, homosexuality is viewed as a way of being and existing in the world – not as aberrant or deviant – but both biologically and socially determined. The pride movement has done much to put “gay rights” into the faces of the “rest” of us, and the community has worked collectively to define themselves as a culture in a society that has otherwise taken measures, even in our recent history, to pathologize them and thus, “treat” and institutionalize them.

Instead of rigorously critiquing our creation of various human “products,” and ourselves -- as vulnerable to bias in the name of economic gain and power -- it is easier and more profitable, likely, to place the blame and onus on those with the difference or disability to change. It is the basis upon which we build our services. The power dynamic, in order to maintain this status quo, takes away the voice, opinions and the agency of our most vulnerable citizens.

It is this last point that Lane makes which is concerning. He notes, and I contend, that the dichotomous dialogue ongoing within the deaf community is most telling of how society constructs disease, aberrance, deviance and “problems,” and how difficult it is for the community-in-question to maintain some consensus in a world that prefers to simplify issues for the sake of efficacy, simplicity and often, profit or cost-saving. From within the deaf community itself, there is a difference of opinion. Some prefer cochlear implants and work to be a part of, or some might argue “conform” to society’s expectations, and others prefer to maintain the language of deaf culture which is embodied in their language, or ASL. The political ramifications of maintaining culture and adapting to the largesse of society has been contentious and it is important in understanding that within groups and cultures, there exist individuals.

Lane states that some within the inclusion movement wish to abolish all segregated schools, but the deaf culture illustrates that such an act would be a mistake, as many within the deaf community have “returned” to their deaf community. Some prefer to be in segregated settings while others feel they belong to the larger disability rights movement. “Neither culturally deaf people nor people with disabilities area homogenous group.” (Lane, p. 87) “It is because disability advocates think of Deaf children as disabled that they want to close the special schools and absurdly plunge Deaf children into hearing classrooms in a totally exclusionary program called inclusion. It is because government is allowed to proceed with a disability construction of cultural Deafness that the U.S. Office of Bilingual Education and Minority Language Affairs has refused for decades to provide special resources for schools with large numbers of ASL-using children although the law requires it to do so for children using any other non-English language.” (Lane).

Such an assessment of inclusion is certainly troubling. What is most concerning is a reverse construction of a disability rights movement – one which claims that it can removed the services, like ASL in the classroom, because “lawmakers have been encouraged to believe by some disability advocates and prominent deaf figures that Deaf people are disabled that , in response to the Gallaudet Revolution, the U.S. Congress passed a law, not recognized ASL or the DEAF-WORLD as a minority, but a law establishing another institute of health, The National Institute on Deafness and Other Communications Disorders [sic] operated by the deafness troubled-persons industry, and sponsoring research to reduce hereditary deafness.” (Lane p. 87-88). My take on Lane’s argument here is that it is just as problematic to over-generalize disability as “just another kind of normal,” and therefore do nothing, or even revoke rights to maintain itself as both individual and community, as much as it would be to assume that disabled people are “tragic victims,” and therefore subjugate them to “treatment” (p.88).

As a mother with an autistic son, inclusion is an important goal for our family, but not at the cost of obscuring, nullifying, prettifying, and ignoring his disability. In other words, when we allow the special identity of cultural groups, be they Downs, Deaf, Autistic and so forth, to be subsumed only within the solidarity of a larger disability rights movement, which indeed share the stigma and struggle in a society that does not accept or understand disability and more often than not, catastrophizes it, the solutions for these unique groups may then become the wrong solutions (Lane). One might say, then, society misinterprets disability, because of its lack of acceptance and engagement with disabled individuals, and then over-generalizes by assuming, if we take the inclusion example, that we can throw a disabled person into a “regular” classroom and that’s the end of the obligation.

Therefore, we cannot allow, yet again, the construction of a general disability-discourse to obfuscate the challenges, medical needs, the accommodations or the unique identity (as well as variance within) a group. Not all disabled people require the same accommodations or have the same needs. “Disability rights” as another “brushstroke” or label must be defined for and by the very group concerned. The professionals and lawmakers unfamiliar with the challenges of the minority group must not define it. The group must have the ability to define themselves and act in the realm of public administration on behalf of their own needs. The rest of us must pay close attention.

Sources:

Berger, Peter L. & Luckmann, Thomas (1966). Society as a human product. In The Construction of Social Reality: A Treatise on the Sociology of Knowledge. Garden City, New York: Anchor Books. Excerpts (pp.51-55, 59-61).

Lane, H. Construction of Deafness. (2006) .The Disability Studies Reader. Second Edition, New York: Routledge, . (pp.79-92)

Disability and its Prevalence in Art

2008-09-22T08:15:00.013-05:00

In an excellent article by Tobin Siebers titled Disability Aesthetics, Siebers notes that "The human body is both the subject and the object of aesthetic production: the body creates other bodies prized for their ability to change the emotions of their maker and endowed with a semblance of vitality usually ascribed only to human beings. But all bodies are not created equal when it comes to aesthetic response." (Siebers, T. (2006) Disability Aesthetics. Journal for Cultural and Religious Theory, 7 (2): 63-72.)

As Siebers points out, and I agree, the most profound and "beautiful" art is that which is not hiding reality, but exposes it. "That is, good art incorporates disability," he says. The Venus de Milo, cited often as "beautiful" has missing arms. Renee Magritte recreates her and at her arm stumps, paints them blood-red.

This is in stark contrast to the Nazi era when Hitler was repulsed by the greatest artists of that time. The Nazi's rejected art as "degenerate," and "Hitler saw in paintings by Modigliani, Klee and Chagall images of 'misshapen cripples,' 'cretins,' and racial inferiors when the rest of the world saw masterpieces of modern art...Modern art continues to move us not because of its refusal of harmony, bodily integrity, and perfect health. If modern art has been successful, I would argue, it is because of its embrace of disability as a distinct version of the beautiful. The Nazis simply misread the future direction of art, as they misread many things about human culture." (Siebers, p.66) To denounce the importance of art, and moreso, the work of so-called "outsider artists" -- I say so-called at this time as "outsider" is also a reflection of how we view people with disabilities on the outskirts or outside of society -- after the example of the Nazis would be naive. Material culture reflects the kind of society we are, and are becoming.

Another artist, Judith Scott, was also considered autistic: "She was also deaf, unable to speak, extremely uncommunicative, isolated, almost autistic," writes Siebers. "She was warehoused at age seven in the Ohio Asylum for the Education of Idiotic and Imbecilic Youth and spend the next thirty five years of her life as a ward of the state until her twin sister rescued her and enrolled her in the Creative Growth Center, a California program in Oakland designed to involved intellectually disabled people with the visual arts. Almost immediately, she began to make fiber sculptures six hours a day, and she maintained this relentless pace for over ten years." (p. 70)

John MacGregor asks critical questions about Scott's work: "can art, in the fullest sense of the word, emerge when intellectual development is massively impaired from birth?..." (p.71)

I agree with Siebers that autistic or any other kind of art created by any person is a form of savantism. Rather, art is an intention and is subject to interpretation. "Intelligence, however, is fraught with difficulties as a measure of aesthetic quality, and intention in particular has long been condemned as an obsolete tool for interpreting works of art...

...Disability aesthetics prizes physical and mental differences as a significant value in itself. It does not embrace aesthetic taste that defines harmony, bodily integrity, and health as standards of beauty. Nor does it support the aversion to disability required by traditional conceptions of human or social perfection." (p.71)

Let Scott be our food for thought this morning. Let her work make us not only question what art is, but what makes up this idea called humanity.

Dedicated to her memory, this website tells Judy's remarkable story.

My response to Harold Doherty on "reality"

2008-09-19T08:13:00.028-05:00

Instead of leaving a comment in my comments section of yesterday's post on Hierarchies Within Communities, I thought it would be useful (not to put Harold Doherty in the spotlight in a negative way) to illustrate what divides many of us in the topic of disability. More importantly, I truly believe that despite these divisive areas, there are also common areas we MUST build upon, and it serves us all to find them:

Autism Reality NB said regarding my post yesterday on Hierarchies:

Unlike Ed I completely disagree.

There are not hierarchies they are distinctions used to indicate different realities and deficits faced by people on the autism SPECTRUM of disorders.

It is good that there are non verbal autistic persons in your class. Do you visit the autistic persons living in hospital wards and institutional facilities or do you just pretend they don’t exist?

My son is diagnosed with severe autistic disorder, assessed with profound developmental delays. In other words, he is severely autistic. We love him dearly and find great joy in HIM not in his autism. But he is severely autistic and it takes great arrogance for you to tell other parents how to describe their children’s realities.

You do a great disservice to the man families less fortunate than you fighting for their children.

Shame on you

My response:

Harold (Autism “Reality”)

First, the woman in my class is not autistic. I think she has cerebral palsy and would be in our society considered "severely disabled."

Second, I am not trying to create a divide in which Connor (your son) does not have full access to the things he needs to fulfill his life. I believe that all people, severe or “high-functioning” deserve to be treated with dignity and respect and have access to a variety of options, the latter of which your political ABA movement has not created for many of us. My son is non verbal and is true blue autistic. I find it difficult to engage in the comparisons you do regarding human life. As much as there is human variety since the dawn of mankind, so too may there be a variety of options and supports from which families and individuals to choose from, while also retaining their agency.

I also do not agree on the usefulness of labels to fully assign meaning, because society tends never to question its sources -- how meaning is biased and most often, outright prejudiced. Currently, there is a great SPECTRUM of perception on what "severity" means in our society, and those of us who blog about autism are more than familiar with the stumbling blocks labels create. For instance, many non verbal people are classified as severe. Helen Keller would have been classified as severe. As the saying goes, "just because I'm crazy doesn't make me stupid," which is an old joke in disability literature. In other words, just because I act funny or can't speak, doesn't mean I lack intelligence. Perhaps this might be telling of the confusion in our society over such language. Severity and illness furthermore does not depreciate the value of a human being. Yet, we've seen it time and again. Those who are strong get to live and those who are perceived and classified arbitrarily as "unfit" get to die -- the first to be deported alongside the Jews, Gypsies in France were the disabled.

Talcott Parsons in his article The Social System (The Free Press 1951) articulated the dilemma facing such groupings and labels:

"The sick role is...a mechanism by which...channels deviance so that the two most dangerous potentialities, namely group formation and successful establishment of the claim of legitimacy, are avoided. The sick are tied up, not with other deviants to form a 'subculture' of the sick but each with a group of nonsick, his personal circle, and above all, physicians. The sick thus become a statistical status and are deprived of the possibility of forming a solidarity collectively. Furthermore, to be sick is by definition to be in an undesirable state, so that it simply does not 'make sense' to assert a claim that the way to deal with the frustrating aspects of a social system is for everyone to get sick." (Zola, p. 168)

Thomas Hobbes in Leviathan, like you, saw the importance of such clarifications "seeing that truth consists in the right ordering of names in our affirmations, a man that seeks precise truth has need to remember what every name he uses stands for and to place it accordingly, or else he will find himself entangled in words as a bird in a lime of twigs: the more he struggles the more belimed." (Zola)

And yet labels turn into generalizations which turn into racism and discriminations. We all know (I would hope) that within labels, there is ever more variety which must make us question the purpose of such labels at all. Today the reality is if you are labeled as severe, you may be written off and not offered the opportunities and assistance you rightfully deserve. You will be a client of someone who decides for you, who may not be patient in providing you whatever it takes for you to maintain some control over your life, and you will likely be denied the medical treatment you are entitled to.

By helping to change the perceptions of people with disabilities we might take a giant step in order to achieve the programs, services, and accommodations and entitlements our children will require throughout their lifetimes that are also socially just.

To remain contentious and closed off to the disability community about the variety of issues, that in REALITY do EXIST and who have experienced injustices in their lifetimes, in such recent history, and then to just write them off as easily as you attempt to in order to achieve your political ends, is mind-baffling. It ignores a reality of a dialogue that has existed since before our own involvement as parents and before our children were born.

I will also not defend myself with your accusation that I do or do not visit autistic people in hospital wards or institutions (where are those institutions in Canada, by the way? Also, I will avoid to ask you the same question in reverse for fear of appearing like John McCain). Many of my colleagues who work in a variety of centers, who provide various services (including ABA), and who share their knowledge and experience with me, have taught me that it requires a lot of effort to listen to all views, and that issues are complex. Our worst mistake would be to discount and deny the factors that do alter the lives of those with real medical issues and pain that accompany some people with and without disabilities. But let me ask you, do you find intestines beautiful (as I attempted to describe in the post on Humbaba) or how about sutures that keep the body shut -- what do our cringes and winces say of our views about ugly/beautiful and perhaps what we fear? How does this effect the way we look at disabled people?

As for personal accusations and assumptions about me, I don't see how they forward the dialogue at all. Again, let's not become a US political campaign. As a mom who loves her son above all else in the world, and who carries the same concerns as most of you reading this, such tactics, and often, outright lies about anyone's character remains sickening and seeks to divert attention and take time away from the real issues, which both adults and our children cannot afford.

This is what I wish to say: The most important thing we can do is to keep our options open, change negative attitudes towards disability, and to recognize that disability has been contextualized abundantly in the medical model that therefore puts those who are disabled in a more vulnerable position rather than one of agency. It has put them in positions where their rights have been literally taken from them. The medical model has sought to label and define people rather than allowing them to define themselves. To this end by making such occurrences outright apparent, many disabled people can and will add a new dimension to the types of service and the ways in which our families and our children are treated and viewed in society. Namely, the disabled have a right to define their identities, their culture, and there is a reason why pride movements have taken place for populations that have been oppressed. In a world that embraces diversity, the disabled are still left out of the loop.

In the words of Irving Zola,

“Call a person sick or crazy and all their behavior becomes dismissible. Because someone has been labeled ill, all their activity and beliefs -- past, present and future become related to and explainable in terms of their illness. Once this occurs, society can deny the validity of anything which they might say, do or stand for. Being seen as the object of medical treatment evokes the image of many ascribed traits, such as weakness, helplessness, dependency, regressiveness, abnormality of appearance and depreciation.” (article cited below)

I like to think that most parents would want to value their children, even if we have differing perceptions about our lives. All those perceptions and experiences are valid and everyone needs to be educated about all of them before they make decisions about who is to be born and not to be born.

I am the type of person who chooses to take a certain path because one of depression and pathology does not empower my son or myself. This has been my choice that I feel is best for our family. I do not believe that to obscure disability, even when it accompanies illness and pain, is a way to improve a wanting system, either. Disability isn’t a dirty word, and neurodiversity isn’t a denial of the challenges inherent in disability – medical in some cases, and yet always a construct of social whim and perception. This is what you seem to consistently accuse me, and others in support of social justice of, Harold, – this denial of the challenges of autism. You may agree with DeFelice who cautioned in a Newsweek article titled A Crippled Child Grows Up, (November 3, 1986, p.13), "The disabled movement has purchased political visibility at the price of physical invisibility. The crippled and lame had bodies, but the handicapped, or so the social workers say, are just a little late at the starting gate. I don't like that. It's banal. When we speak in metaphorical terms, we deny physical reality. The farther we get from our bodies, the more removed we are from the body politic..." (Zola, p.170.) Those you have classified as part of a neurodiversity movement, or disability rights movement, do not deny the challenges of the disability called autism for it would be a negation of the autistic self. Therefore, I do not separate Adam and autism. I do not bemoan autism or our existence with our autistic son. "Thus, biology may not determine our destiny: but, as with women, our physical, mental and biological differences are certainly part of that destiny." (Zola)

For those who do wish to separate autism and the person as is typical to separating illness from the person (as if it's a nasty thing to do as to debase one's character) to achieve political ends, allow me to ask: what have those doom and gloom marketing tactics of our Canadian ABA movement, or an anti-vaccine movement really achieved other than to ignore millions of disabled voices? What does it serve for a mother to insinuate that all autistic people are aggressive and dangerous so that others get voted out of class? What does making autistic people appear ill and in need of "fixing" or "unable" achieving in the name of being included and supported in society? What has this type of advocacy achieved for my son Adam who would otherwise be excluded from programs without my determination, support, and will, even when I feel exhausted to justify his existence as a real, living, and vital human being, capable of achieving and contributing in his own way if only given a chance? Are you trying to place blame on the way I choose to view our lives for the reason you are not receiving the ABA services you want? I am not to blame for that. Do you really believe I have that much power? Should I be flattered or is this just scapegoating? I'm just yet another valid voice who also deserves to be heard and who deserves to learn and to take part in this important movement. No, not shame on me. You do not have the right to silence me.

Pride, joy and a determination to move on in a world that otherwise gazes, is fascinated with, remains at arms length and thus negates the existence of our children and our families, will hopefully lead to a new era where disabled people have the most insight into the way others as well as accommodations can support our children and take the stress off many families.

Finally in the words of Nancy Mairs:

“First in the manner of semantics, I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are handicapped and disabled. I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People – crippled or not – wince at the word cripple, as they do not at handicapped or disabled. Perhaps I want them to wince, I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind to, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.” (On Being A Cripple)

I guess real acceptance of the gray and complex area is difficult for some people enough to want to simplify the issues at hand and stake their claim on some kind of "reality." But this mom will never give up. Nor will I ever take my outreached hand away from you or any other person who disagrees with me. I credit my son Adam for making me want to keep trying.

Source: Zola, Irving. (1993) Self, Identity and the naming question: reflections on language of disability. Social Science and Medicine, 2, pp. 167-173

Hierarchies Within Communities

2008-09-18T05:24:00.010-05:00

We've all heard it if you are a parent of a disabled child. Be it Downs syndrome or autism or whatever else you hear this: "well, your child is high-functioning but my child is more severely disabled." Or, "my child is autistic but he is very high-functioning."

What I am concerned with is perception of who is "better off" or "better able," or worthy of value within any community. Perhaps Barak Obama is black but not "too black." Maybe Gweneth Paltrow is part Jewish but doesn't "look Jewish." Maybe Adam is down right autistic, but he doesn't "look autistic." What does this say of how far we've really come?

I was reminded of this yesterday when I read an article from the September 8th edition of Businessweek, Paralympians Break Ad Barrier. During the course of the Olympics, which I did not watch this year, I engaged in some debate with Henry over the segregation of the games. Why do we segregate them at all? I questioned. Of course, we do know that the Paralympics and the Special Olympics do not receive the same media coverage, nor do they attract the millions of dollars of sponsorships. I heard from some commenters that a competitor with a prosthetic would have an "unfair advantage." Are you kidding me?

But hey, says Mark Hyman, the writer of the Businessweek article, things they are a changin'. "So far, the money is relatively modest," he notes in referring to Tatyana McFadden's sponsorships from Visa and Nike. "Deals with national brands range from a base of $20,000 a year to $70,000, with bonuses for making the Paralympic team and winning medals." Apparently some of this is just enough to defray the cost of their expenses.

I cannot watch the Olympics itself with the same eye I used to. It's not that I am against competition or the celebration of effort and discipline. I just had the feeling that there was the implication that competitors are models of human perfection. If I took the time to do my research on the Olympics and its history, I speculate I would find such references. Remember the controversy over the little Chinese girl-singer who wasn't good looking enough so she was replaced with another little girl who lip sync-ed at the opening ceremonies? I note these occurrences with a bad feeling in my stomach. Is a passing mention of the Special Olympics during the closing ceremonies good enough? I mean, who is really watching with the same verve and interest? What sponsors are going to support the media in covering it??

Hyman continues by writing, "Disabled athletes, of course, still face many hurdles. Media coverage of the Paralympics is scant, and confusion about the event is abundant. M. Quentin Williams, the lawyer for Josh George, a top wheelchair racer, says part of his job is explaining to potential sponsors that the Paralympics are not the Special Olympics, [bold mine] the competition for the mentally disabled. And many companies 'still have it in their mind that disabled means unable,' laments Deborah McFadden, mother of Tatyana."

Do you see it? Do you witness the hierarchy? I hear the same prejudice from physically disabled people who don't understand autism who claim that the mentally handicapped are somehow still inferior to them. I say, down with hierarchies!

As a parent with an autistic child, Adam, who is the centre of negative attention and targeting by the media and negative "advocacy" groups who claim he is "ill," and should be fixed instead of supported for who he is, I have to call attention to the creation of hierarchies within the very communities we might expect would support him. We can speak of diversity, of acceptance, and yet, we still have a compulsion to create and us and a them. In part, I believe the idea is dominated these days by an economic system that enforces the idea that to be competitive in the global economy means to be of able body and of able-mind. Instead of an organized Eugenics movement that transpired in America in the early half of the twentieth century, we have replaced it with a set of criteria of what we think we need to be in order to be "globally competitive."

I have difficulty with such notions as I watch "severely disabled" non verbal students in my graduate class at York University speak eloquently on their devices, who have insights into a life that not all of us have lived, and who, unfortunately for those corporate sponsors, could and would make enormous contributions to our global health (in the sense of healthy attitudes) and prosperity.

We live in a world of paradox. While things they may be a changn' humans have the proclivity to segregate. As Michael Berube states in his fabulous book Life As We Know It,

"Humans, it would appear, have an innate 'right to life' - but only until they're born. After that, it's their job to become self-sufficient. No one owes anyone a living, as the saying goes, not even if the 'anyone' in question is physically or mentally disabled." (p.57)

and,

"It is a strange land, no doubt, adequate only to the imagination of Dickensian satire, where leading politicians and self-appointed moralists talk endlessly about 'family values' while kicking the crutches out from under Tiny Tim."

The 'system' as we know it, still kicks the opportunities out from under autistic people, and all of us must take note.

Prosthetic Politics and "Palin's Promise"

2008-09-10T09:03:00.005-05:00

Not all "special needs families" are alike. All one has to do is to look deeply into autism politics to understand that "advocacy" doesn't mean the same thing to all people. There are the parents, who advocate for their rights and proclaim the difficulties of raising special needs children, often at odds against the disability rights movement -- people with disabilities -- advocating for their right to be heard, respected, and to be at the helm of directing the movement toward the change of attitude and the accommodations they need. While one parent may bemoan the existence of a special needs child in their family, using their love to fight for their child's cure, there is another family that wants their children to be loved and accepted for who they are, and thus allowed to contribute and be included in all facets of society. Advocacy, my friends, is two-faced.

So, what of "Palin's promise?" Is she a mom who understands the complexities of a disabilities discourse that needs to move everyone forward? What kind of special needs parent is she? Where does she really stand on disability rights? Does simply having a special needs child give a parent the right to advocate on behalf of people with special needs? It's something I, as a parent, reflect on everyday.

And then there is Joe Biden who proclaims that any parent with a special needs child should be in support of stem cell research. Why? Because, I presume, we as parents must all want our children cured, or these disabilities prevented. Disability is being used as a sort of prosthetic for political gain. Prosthetic narrative is often used, for example, in Hollywood movies regarding disability. The disabled person carries the narrative but is not central to it. Disabled people are usually represented as mysterious, savants or idiots and are in the background. Like the use of the disabled to carry a narrative, rather than discuss disability and PEOPLE head-on, American politicians seem to have to mention it, to be in "support" of it somehow, without full information. Is the mere mention of disability meaningful to these people, or is it used for some political gain to carry a candidate to the Whitehouse? Who's really listening to disabled individuals here?

All I know is that both parties really don't seem get it at all. While we embrace diversity on many other levels, the disabled are cast aside while the non disabled make vast assumptions and declare them in front of millions of voters.

All I can say is that either way, I am nervous.

Inside/Outside

2008-09-09T11:43:00.006-05:00

I have begun my graduate work in Critical Disability Studies and must say am quite overwhelmed adapting to a new schedule with a small boy and still needing to attend to his needs. It is life, I say. Many of us have to work multiple shifts to make ends meet; some of us are single moms or dads. At the end of the day, life happens and we learn to manage the best we can. The key phrase is “life happens.” All the things that happen to us make up the sum of our lives. In this view, most tragedies might be seen as a state of mind.

As I sat in my first class on Disability in a Cultural Context, and discussed Humbaba from Gilgamesh (his intestines were displayed on his face – on the exterior as seen in the illustration above), I thought of our insides and how they repulse us and how we even fear them. Think of our cuts, our surgeries, our open flesh – cadavers, even – and what that connotes. We feel squeamish, not just because the insides are slimy and bloody, but also because our skin protects us. It keeps not only our physical organs alive, but think about how our skins, our surfaces, keep other aspects of ourselves private and away from public view. One of our foremost goals for living is to keep the flesh closed!

“Arguably, Francis Bacon has been most successful in thinking his way toward a kind of fluid body that is at once inside and outside, where there is no longer any sense to the inside/outside dichotomy. ‘There is great beauty in the colour of meat,’ he reminds the interviewer.” (James Elkin, “Cut Flesh” in Pictures of the Body: Pain and Metamorphosis, pp. 108-149).

As we become over-focused on the skin’s surface, the exterior through its appearance, aging and media-defined beauty, we are repulsed to think of it showing what is actually happening on the inside. While one looks young on the outside, however, there is no denying that one’s true age or self, as it were, is as it should be on the inside. On the inside, there lies the truth.

I haven’t quite resolved my thoughts on choosing to have a hysterectomy after my diagnosis of early-stage ovarian cancer, but I am choosing to express them in the raw, like cut flesh. The choice to keep on living for Adam is an easy one for sure, but unlike breast cancer or illnesses or diseases that appear on the exterior, no one thinks twice about what part of my body I am now missing because it doesn’t show. I know my body is changing – sudden weight gain, hot flashes and the consequences of hormone replacement and early menopause. I’ve thought about whether I’m “less of a woman,” now that I know longer have a uterus and a pair of ovaries. I’ve thought about whether I am looking more “matronly” than before. To deny that these thoughts don’t run through my mind would be a lie. They do not dominate but they sort of lie there lolling about throughout my day. One day, this experience will be yet another one of those distant memories and events that will form me. On the other hand, there’s an insistent, if not defiant part of me who insists she hasn’t lost her “mojo.” I certainly don’t feel that I’ve become less of a woman, but I am becoming a different sort of woman. Femininity is very much tied to appearance in our culture, and that is the perpetual struggle.

My body and mind our changing both on the inside and out. There’s only so much work a person can do to hide their age. My husband is gentle on me – telling me that I’m “beautiful” and to give myself time (to get back into shape). Certainly, that’s helped my ego, but can such an assertion also be a negation of what’s happened, and is happening, to me? For a negation or trying to be who I was before the surgery is a denial of what I am now and am becoming. The surgery doesn’t define me, but is part of a set of experiences that does and will sum up my life. This is not the triumph over tragedy that defines me, but illness is a part of life experience that is common to us all. We view it so negatively and it would be downright sacrilege to describe this process I am describing here as “beautiful” or even joyful.

So, is pretending to be normal, young, beautiful, just because it doesn’t show on the outside, make me feel good and if so, for how long? Is saying Joy of Autism flowering autism up? Words and pretense mask the truth of complex nature of losing body parts, becoming scarred, ill, or disabled. To take it further, perhaps becoming ill or disabled is not the real tragedy, but our unwillingness and even fear of looking at the interior, our own feelings towards the body, illness, mortality and struggle, the real tragedy here.

Does losing my uterus mean I have depreciated in value as a woman? I mean, that feminine, human depreciation is the issue at hand here! Similarly, as Irving Zola has written,

“Call a person sick or crazy and all their behaviour becomes dismissible. Because someone has been labeled ill, all their activity and beliefs – past, present and future – become related to and explainable in terms of their illness. One this occurs, society can deny the validity of anything which they might say do, or stand for. Being seen as the object of medical treatment evokes the image of many ascribed traits such as weakness, helplessness, dependency, repressiveness, abnormality of appearance and depreciation of every mode of physical and mental functioning. In the case of a person with a chronic illness of a permanent disability, these traits, once perceived to be temporary accompaniments of an illness, become indelible characteristics. The individual is trapped in a state of suspended animation socially, is perpetually a patient, is chronically viewed as helpless and dependent, in need of a cure but incurable.” (Elkin)

The phenomenal experience of losing parts of my body is important to me in ways I am sure I have yet to discover, even if it’s invisible and therefore easier to pretend to forget. Just as any disability, however, – there is no forgetting. There is always some kind of reminder – some more harsh and prejudicial than others. For autistic individuals, they are the targets of a barrage of insidious statements and assumptions. Yet, what most of the general population tends to forget, our bodies, like our lives, are in flux. Disability and illness, therefore, are natural and therefore no human can depreciate in value.

Acceptance isn’t a religious sentiment how "God all made us equal." I am not saying that we are not all equal, but I fear religion dresses it up a bit too much and becomes a negation of the reality of being disabled. Acceptance is also not about triumph over tragedy, and it isn’t about being “differently-abled” which is used more often as a refusal to look at disability straight in the eye. I fear that the majority of users of terms like “autism acceptance” are now using it as such a negation. Like life, like the language most of us wish to hear, autism is neither here nor there. You can't dress it up, you can't sentimentalize it, you can't make it a horror show either. It is neutral, or at least such neutrality might bring some of us relief from having to explain our, or our children’s disability, over and over again, as if we must justify disabled existence as not a form of depreciated human, but rather, a valuable one.

Back At It

2008-09-04T16:54:00.003-05:00

After enjoying a summer with Adam, we are both back at school. Adam has started grade one and I grad school in Critical Disability Studies at York University. We are both busy and happy and man, our plates are deliciously full. I find it hard to complain about being too busy after being in the hospital for ANY length of time!

Henry announced today at a UJA function that I am working on an inclusion initiative with some other very active people in our disability community. I know I keep mentioning it, but I will provide you the first ad next week, I hope.

What Do We Think We Know?

2008-08-27T14:26:00.004-05:00

Okay, you are at your computer now. Read this first, then without looking, go away. I mean it -- don't look after you read this:

It's a qwerty board question. What symbol comes after L? What symbol comes after U?

If you are like me, you can't answer the question. You can't SEE the symbols in your head (did you know the typewriter was invented first for blind people?). But I can type without looking. My fingers, taught how to type in grade eleven, learned where to go quickly without having to look. Yet, when my mother asked me the question recently, I was stumped. I couldn't answer without typing and especially without looking.

How is it that my fingers know while neither my brain nor my mouth can respond with the right answer?? Okay, when I learned to type, I had to learn deliberately. Yet for over thirty years now, I simply take the process for granted. I don't have to think about it anymore.

I got to thinking how much that might be like the way Adam might know things-- how he seems to just know, but can't always answer. I mean, if I had to think about breathing, I would be as sure as dead. Not responding or being unable to respond does not necessarily mean Adam is not aware and does not understand things. It also doesn't mean that Adam, like all children, isn't taught deliberately, either. Still, watching him over the years I have come to observe that he learns about things on his own in a variety of forms that are innate to him, and I suppose we all do come to know the world and experience it differently.

So, before judging an autistic person, really ask yourself about what you think you know. For if there is one thing I've learned is that what I think I understand, I really don't know at all.

Friendship and Phone Calls

2008-08-22T18:16:00.007-05:00

I kid you not that I write this immediately after the event itself.

Today was the last day at camp for Adam. I was told, no exaggeration, (like my post earlier this week) that Adam was declared the most popular kid at camp. Okay, I bet most of you are thinking, yeah, sure... a non verbal kid (for the most part as Adam can barely speak but can on rare occasions say a phrase or a word) making friends, eh? I bet you are thinking that Adam's assistant fostered that, or that maybe it was just the kids feeling sorry for Adam that they spent time with him.

Apparently not. (Please read previous post to this one)

Adam was on his own in fostering his own friendships. Today, all the counselors came and lined up at the bus -- JUST TO SAY GOODBYE TO ADAM. He had, as I've been told, created so much connection between him and others that he brought out the luv. And please don't say it's because he's autistic. That would just be sugar-coated prejudice.

Today, I have been dog-tired so much so, that I did not pick up the telephone for two calls where I did not recognize the names. After crashing to my dose of supper-time news, I decided to pick up the messages.

Message One: "Hi Adam, it's Dylan from Camp. I really want to talk to you."

Message Two: "Hi Adam." And then I heard some shuffling and muffled sweet child-talk I could not understand, "I really want to play with you... call me back."

We called Message One back first as I asked Adam to dial. We reach Dylan's mom and I introduce myself, stating that Adam is there, listening. Adam is smiling. The other mom is surprised, "Dylan called? Really? I didn't know that. I saw him with the phone and a piece of paper in his hand...isn't that funny... so wait, I'll get him.." Dylan is apparently getting tired in the background. There is shuffling against the phone. It's 7:15 and almost bedtime. I hear from a more mature male voice that it's rude not to take the phone after he has called and then,

"hi adam."

"hi di-wan," Adam says in return as I prompt him in his ear. Adam is beaming.

"hi adam."

"hi di-wan."

Then there is some more shuffling and muffled sound of the phone rubbling against something.

"bye Adam."

"bye bye Di-wan."

I ended speaking with the mom as she stated that Dylan wants to play with Adam. Adam is still beaming, cooing, and ready for the next call.

He dials Message Two where mother also answers curiously. I find out the child whose articulation I could not recognize is Noah who is getting read for bed but who really wants to play with Adam next week.

I am thrilled. I did not have to "arrange" a play-date. I just let it be and Adam has made his own friends which we hope to nurture and keep.

How can I not relish Adam's very first unprompted, unsolicited phone calls from his friends. It is a joyous evening.

Bottle That!

2008-08-21T07:59:00.019-05:00

School is on the horizon -- for Adam and myself. Adam is beginning Grade One and I am starting Graduate School in Critical Disability Studies. Some people have written that they miss my blog and hearing about Adam, but I must admit, it's been nice to get busy with some other things that needed attention. Most importantly, a good dose of summer fun after months of health issues.

Since Adam was diagnosed with autism at 19 months of age, I had grappled with how much one-to-one "therapy" he needed. I thought, in the beginning, that perhaps our summers would be full of work, trying to "get Adam up to speed," whatever that means. I thought that for Adam's sake, maybe we would have to give up many programs and vacations in order that he wouldn't miss out on needed "therapy." I became familiar with putting him in programs, only to pull him out early for some one-to-one instruction at home. Did "getting him up to speed" mean getting him to talk, to respond, to understand?? If I was to accept Adam and autism, what was I doing, really? Were the ideas not in direct contradiction to each other? Of course, support isn't the same thing as "getting someone up to speed," because many of us have realized that we all travel at our own speeds, and let's face it, when it's over, we all end up at the same place. Supporting someone means enabling participation and contribution -- whatever that takes. It is more successful when we put forth a variety of efforts including individual support, constructing supportive environments, working towards societal understanding, and fostering diverse and inclusive communities.

It was only when I realized that Adam was understanding and then some, that I began to let go of some of the currently popular therapies, and sought out supports -- and suppoters -- where he truly benefited. I also began to learn that my perception of his understanding or what others believed lack thereof, was the result of his mode of expression rather than his understanding. I also learned that even the ways he comes to understand the world is often different than my pathway to understanding, but no less sophisticated. When I came to entertain all these possibilities: that he could go to school with his assistant and succeed even while expressing his autistic manner and needs, that others would learn from Adam and realize what a great person he was, that Adam has his own way of learning about the world, that I REALLY began to relax. Okay, sure, I always have that normal dose of parental worry -- no parent would be responsible without it.

At camp this year, a fully inclusive camp, Adam was declared the most popular kid -- tomorrow is Adam's last day at camp. Even among the male counselors, so young and unsure of themselves and how to deal with Adam at first, Adam brought a love out of them that everyone acknowledged as quite special. Kids recognized his intelligence, and everyone wanted to be with Adam, take turns with him, to be his partner in activities. Adam is no jock yet, believe me. His motor coordination has taken time. He is a careful observer, rather than an active participant in sports, but he is coming around. Counselors come over to Adam's cabin just to see him. His cousin -- who happens to be working at camp -- had reported the same claim. I thought, these people must be exaggerating, but I keep hearing it over and over again from a variety of sources regarding Adam's popularity. What parent wouldn't be happy about this? Can I bottle all of these positive experiences as Adam continues to grow into the world?

"If happiness could be bottled," said one of the counselors, "it would be all Adam." Now, while I like to think that maybe I had a small part in that, in reality, I have to say it's all Adam indeed. I think he's a special person, not because of autism, but because that's just the kind of person he is. Autism doesn't make him special. He is just a special kid. Maybe because he has difficulty talking, this affection might be his way to adapt and to create connection for himself with others. For certain, Adam wipes out every stereotype out there about autism, affection and connection.

ADAM WITH HIS SIBLINGS.

Adam came home always with a smile and a certain strut. I witnessed his confidence soar -- exactly what camp should do to kids. He is still a child who cannot talk, but in so many ways he can communicate fantastically. I am relieved that he did not attend a place where is LACK of ability would be the centre of attention at camp. I hear of way too many places that do. Of course, I would never send him to such a place, either. I have come to understand that a big part of my job as Adam's parent is to find supportive environments for Adam to be himself and grow.

So nearly five years have passed since those more worried days, but only this summer would we let go so completely while still offering support and enrichment as I enrolled Adam in his first full days at camp -- no real one-to-one at home, but instead, everything at camp, as we discovered that he likes to learn and be with kids. No more "therapists. No, we asked them to call themselves "Adam's Assistants," in order that Adam begin to understand that they were there for his needs, not there to remediate him. It is important for Adam and I to encourage others to support him and his right to communicate, and to help others understand and interact with Adam on their own terms without "helping" him. I thought that if Adam would need assistants on and off or always throughout his life, then Adam has to learn how to self-advocate now and learn how to employ assistants for his needs. Similarly, the peer-to-peer relationship and nurturing goes both ways. It does not seek to remediate the autistic person in order to have a relationship with others, as often so many autism social groups are conducted, but also helps others to interact and understand Adam in equal terms which is managed by some kind of subtle, personal negotiation between them. It discourages the helper-helpee dynamic and encourages respectful and equal relationships.

Back in the day of the Joy of Autism: Redefining Ability and Quality of Life event that TAAProject put on and popular in the press, I was constantly attacked by Canadian ABA advocates. "It's okay if she wants to let her son stay up until two in the morning," said Brenda Deskin, an ABA advocate here in Ontario who ambushed me on CFRB and falsely claimed her husband was a doctor on radio, insinuating therefore, she had more expertise than I (he is, in fact, a dentist). She would enmesh the word cure with therapy -- implying that I was doing nothing to help Adam while insinuating my negligence of him -- which was not only an assumption, but came off as a planted lie to influence others to her way of thinking in order that the Canadian Government reimburse her ABA expenses and allow ABA to be funded by Medicare in Canada. I am not one to endorse assumptions -- even of those who prefer ABA therapy in order to influence opinion, and I am most definitely not against support, as so many ABA advocates in the past have stated. I am an advocate of support of all kinds that works for autistic people and helps families understand autism, but I am also a supporter of choice for families. I have nothing against this individual and her efforts and cannot comment on how difficult her life is or isn't. Yet, I've always had big issues with the way in which parents "advocate," because my son will hear it. There is a way to express difficulty that doesn't put the blame solely on our children -- maintaining their dignity and also saving ours. I do not wish for Adam or any other disabled person to hear it, and yet that kind of "burden" talk will go on. No, Adam must learn how to maintain his dignity and poise in a sea of ignorance.

I took a trip this summer with some friends for Henry's fiftieth birthday.
A very good friend of mine who has two disabled children, one with Downs syndrome. Around the table was a genetics counselor and other friends who do not have disabled children. For some reason, the way my friend tried to convey difficulty was different than mine and the dialogue became progressively emotional with every sip of wine. When I try to explain difficulty, I explain it not as the result of the child, but as a result of a world that is still ignorant of disability and does not yet understand the debilitating nature of pity conveyed in a media-driven world that plays commercials every half-hour or less on curing something to raise money for some kind of charity in support of research. The idea of being less-than-"perfect" seems to be quite a despicable state in our age, if you believe many of these commercials.

My friend was saying the same thing as I was, except that it seemed to me, what was inadvertently expressed, was that our children's disabilities was the source of the difficulty. Of course, a result of my nature and an awareness of disability representations on the popular psyche regarding disabled individuals and their value in society, I couldn't help but to debate the perception, in fear that that's how those without a disabled child might think she was saying (which she wasn't but the complexity of communication is very difficult to maneuver. I must admit that I have difficulty letting such topics just go, not because of my friend, with whom we share many similar opinions, but, as I said already, by the way the rest of the table may have perceived the discussion and the nature of disability).

In the midst of the conversation talking about genetic counseling, I had noted that 80-90 percent of fetus' identified with Downs are currently aborted, while also pointing out the lack of advocacy from parents in that counseling room, like my friend and I, on the great lives we live with disability, at which point, my friend broke down. To make a long story short, we both ended up outside hugging each other. She felt destroyed by the statistic. She said, "when you said that percentage, I lost it. That means there will be no more D's (her son's name) in the world..." and noted how it was so unfair. We acknowledged how much we love our children AS THEY ARE and we very much respect each other and our children. While she felt distraught that societal ignorance will always exist, it further strengthens my resolve to be involved with inclusive initiatives, no matter how long it takes. We are, as friends and parents of disabled children, working together in our own community regarding attitudinal change, family and person-centred support, and a more inclusive community. In my view, such an event demonstrated how parents CAN come and work together.

If I could put my summer experiences in a bottle, or in fact my experience from this year alone, this might be the year of learning valuable lessons, of accepting many views, many parents, many people, and figuring out how we must all work together.

Adam, thankfully, is happiness, personified. He is still young, and happiness may grow with a tinge of frustration, maybe even sadness, but it will hopefully strengthen his resolve to maintain a strong view of himself, and continue the work that still needs to be done.

Bi-Racial? Disabled? Blended? Acceptance Of Children "Not Like Us" But Who are "Part" of Us

2008-07-27T12:02:00.026-05:00

Diversity training has begun on the popular airwaves. CNN's Black in America, with Soledad O'Brian, aims to express the many sides of living as a black or bi-racial person in North America. Watching it, I see a similar theme that may be helpful for parents with autistic children. It is the comparison of being black and having a white child or vica versa. It is the experience of a parent without any disability or experience of it, who has a disabled child. If our children are "not like us," then who are they? To which community do they belong?

I believe it is one of the major sources of tension out there -- why the "recovery" movement is so strong, why acceptance is so difficult. While not accepting the status quo is great in terms of pushing for acceptance and inclusion of disabled individuals, it is not that helpful when the movement takes a turn to fundamentally change the individual's genetic make-up -- to say, in essence, there's something ill, or wrong with you. You are sick and we have to fix and heal you. If we don't, your life will be hard. We've heard it many times -- there is a strong movement against calling disabled people ill. The medical model doesn't fit the human model. While medicine can help us feel better, it can't take human difference away. If it tries, it can't be successful. I'm one who believes that any "progress" in science will see its regression too. In other words, not only will there be ethical problems, but with every seeming "advance," there is also an antithesis. With the advent of our lives being extended, for instance, we have more disability -- this is not to say that disability is wrong, however, with the extension of our lives, it is natural. If you are religious or believe in God, one might say that only God knows why he creates what he does. If you are secular, you might believe that there is meaning, value and importance in the grand scheme of things, and that is still, perhaps like God, ineffable.

I believe that some of my family members have strong autistic traits. My father did not speak until he was six years old, for instance. He became an engineer and has exceptional eye for technological detail to the point of losing others when he talks about it. It is his obsession (sorry dad, but I think you are a brilliant). I crave alone-time and privacy and am much less social than my husband to the point that I think others may not understand me (I prefer to communicate more in writing and am not as reserved when I do so). As a child I used to play alone for hours and would twirl until I passed out (Adam does not twirl). I found idle chatter highly uncomfortable yet as I've become older, I've become better at persevering small talk. Like Adam, my obsessions have been words and letters. I invest in art with words in them or art that looks like it has been written upon. I am a big fan of Cy Twombly. I collect scrabble letters and typewriters. Because of Adam, my interests and habits have become more obvious to me.

So, I guess Adam, who is autistic in a non autistic family, really does belong. We share the same physical features. We even share personality attributes. Yet, he has a label and I don't (which may suggest the nature of labeling and why so many people cringe with labels -- they can help AND hinder). He is "autistic," while the rest of his family "is not autistic." He has a community that organizes conferences for and by autistic people. I cherish that for him. Maybe in a way, I even envy him. For the communities who must really stand and stay together become the strongest. I do not fully belong save for being his strongest ally.

Some people get offended when they hear "autistic person." Some prefer "I am a person with autism." Without re-hashing this debate too much about person-first language, I don't think it matters how we put it. It's the manner in which we put it -- the tone of our voice, and the way that that tone reflects how we feel about people, the words we put alongside autism. It matters that we all recognize that we are all the same despite our differences. We are all equal, even though our contribution and output may manifest differently. We all have the same rights, even if one person is less independent than another. It doesn't all fit into a nice convenient box, that may be true.

As such, I like the comment made on the CNN blog about pride. Autistic pride, gay pride, we all know why those movements have had to spring into action: because there has been too much medicalization and stigma of both, and a need for society to become familiar with the paradox of difference and same-ness. There is no "other." There are only variations of ourselves. So I found the hundreds of comments on this series really interesting in the context of diversity, pride, but most of all this sense of which culture do we become loyal to or do we identify with? In my view, why can't we belong to more than one?:

Lynn Whitfield
Actress

My daughter Grace and I watched the premier of CNN’s groundbreaking “Black in America.” I thought we would have lively discussions around many of the themes concerning black women in this country. However, when she saw the segments on interracial marriage and the children of those relationships, she had a visceral response.

I saw an activist being born.

Grace seemed ready to adapt James Brown’s black anthem to her cause: “Say it loud, I’m blended and proud!” I saw my daughter stand up for the equality of blended people like herself in all her olive-complexioned, big curly afro-like glory. She went immediately to the computer with dignity, passion and everything but a fist in the air...

---

As a parent of biracial children, it feels really good to read such an article. That’s exactly the way I want my children to be about their heritage: proud of both!
It is definitely unfortunate that you have to make a choice between different races. There are still a lot of administrative papers which do not have an “Other” section. Very confusing for the parents and children.
But after all, aren’t we all from Africa anyway?

-----

I am proud of having a child with autism/an autistic child. I believe that being autistic forms an important part of his experience with the world around him -- both from a sensory point of view as well as how he will be treated and regarded by others. He will grow a natural sensitivity to this and his ideas will be shaped by it. It is why I say that he is an autistic person. Jenny McCarthy, because she thinks autism is a disease, and is afraid of it like cancer, is appalled a the notion of calling a child autistic. I see her view as a denial of our children's right to be who they are and accepted for that. I personally think it is wrong for a parent to think disability, or autism, is a bad word. I think the disability community, much like race, do not identify with the cancer comparison in the sense of being ill, however, it is interesting to me, after being through a stage one cancer experience myself this year, that people with cancer will identify themselves as being "cancer survivors" in order to explain who they are by virtue of their experience with cancer. Going through cancer, as my mother and I can attest, indeed shifts something within you. The experience forms who you are. And I don't see the problem with that.

I want Adam to be proud of himself as he is. He is part of a family who shares very many of his traits --inward and outward -- yet he also appears different in the way he expresses himself and moves. Autism may be similar to the experience of being bi-racial or "blended," if you will. Autism is a part of all of us.

Yesterday, Adam sat through the entire movie, E.T. Watching with him made me either believe Steven Spielberg is really autistic, or that the man really gets it.
Usually, Adam can get into 30 minutes of a movie, and he's off doing something else. Yesterday, he would watch, then giggle, then roll around the couch, then snuggle with me -- enough antics to make many adults think that he couldn't have been really paying attention, but I could tell he was. There were also moments when he would repeat the lines. He would watch the screen and be still. Therapists tend to use the same stories over and over again to assess an autistic person's comprehension of a story. And yet, when Adam sees something new, or more complex than people thinks he will understand, he really gets the gist of things. This typed conversation I had with him yesterday illustrates this:

Me: "Adam, I really enjoyed watching the movie with you today.
Adam: i like toad.
Me: what was the alien's name?
Adam: et
Me: E.T. had lots of feeling and a very big heart. E.T. had lots of love for others.
Adam: Et was the guy yes
Me: E.T. could hardly speak. In a way, E.T. is like you. He understands but finds it hard to talk.
Adam: E.T. was question
Me: Do you think you and E.T. are similar?
Adam: E.T. was the want
Me: What is want?
Adam: E.T. was the want to speak.
Me: E.T. wanted to be able to communicate. What else did E.T. want?
Adam: et wanted to go away.
Me: Where did he want to go?
Adam: home.
Me: yes, we all want to be home and be with people who are like us.
Adam: i people."

Indeed he is people, a person. Adam is Adam and he is all of us.

A Note About Crying to Michael Savage

2008-07-26T09:57:00.003-05:00

I was very disturbed and concerned last week, as most of our community was, when I heard of Michael Savage's remarks on radio. As you can read in yesterday's post below, he suggested that autistic people are faking it, that the kids are crying as a bad behaviour instead of recongizing what that behaviour might be communicating.

Today, I have an example of something Adam has written and how I must try and understand what he is trying to tell me. I can do so by watching him and I usually think I can understand, but also, because he can, we practice his typing. Of course, when autistic people are distressed, communication is more difficult. Nevertheless, I gently prod Adam to try and tell me what he means. For weeks now in the summer he has been typing "red jar." Because he's been using it over and over again, I was trying to learn its meaning. I found out today:

Me: Why are you crying?
Adam: I am crying read in red on red
Me: That is difficult for me to understand. I wonder if you can explain what red means when you write it?
Adam: red means to cry yes.
Me: What were you crying about?
Adam: in red jar
Me: So do jar and red mean to cry or be upset?
Adam: feel too hot.
Me: Oh yes! It is very hot and humid outside today. Were you very hot on our walk with Kiki?
Adam: yes
Me: Would you like anything to eat or drink before mommy takes you out?
Adam: is ready a party
Me: Mommy is taking you out for lunch.
Adam: to ears is eat.

So, I learned that all summer Adam's use of red jar means likely his feeling hot. The air is humid, so maybe he links that with the jar. I have to inquire more. Also, I liked the way he said "to ears is eat." I took that to mean (and the receiver must always acknowledge their own way of knowing and understanding meaning), it sounds like we're going to eat.

Savage said autistic kids are just brats. Imagine Adam being viewed, as he tries SO hard to communicate his needs and desires, being treated like a brat! I really think the brat is Michael Savage for accusing autistic children of this. He makes our lives more difficult.

Beyond Surviving The "Savage" Hurricane Season

2008-07-25T08:23:00.014-05:00

It feels like we are in the eye of the storm. While I might say I hit a personal one with cancer earlier this year, at least that part is over and Adam and family are having the best summer on record. But we are really too close for comfort. As you can see from the images above that I took from Florida, tornados and hurricanes are close at hand.

Michael Savages out there or not, there is something about sustaining advocacy, and being able to rise above despicable remarks. It's like any other prejudice out there be it racism, anti-semitism and that continues to oppress others and segregate -- we know ignorant people will exist, that they do exist. We know someone has always wanted to get rid of Jewish people and we know facism still marches to its own drum long after Hitler's "reign" of terror. Yet, we must put the SAVAGES in the spotlight lest we ever forget how easily we can give over our own freedom and power. It is why groups exist to ensure that we never forget.

Today, ASAN and other organizations including The Autism Acceptance Project released Outrage over Michael Savage's Remarks Grow: ASA, UCP and The Arc and many others join the disability community's joint statement:

We, organizations representing people with disabilities, family members, professionals and other concerned citizens, are calling upon you to withdraw support for Talk Radio Networks in response to the outrageous comments by TRN personality Micahel Alan Weiner, also known as Michael Savage.

On July 16th, Weiner announced: "Now you want me to tell you my opinion on autism since I'm not talking about autism? A fraud, a racket...You know what autism is? I'll tell you what autism is. In 99 per cent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is. What do you mean they scream and they're silent? They don't have a father around to tell them 'Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straigten up. Act like a man. Don't sit there crying and screaming, idiot."

These comments represent dangerous misinformation. The refusal by Talk Radio Networks to condemn the comments or undertake any steps in response to them, as well as Michael Savage's refusal to apologize, is absolutely unacceptable. The autism spectrum is a very real developmental disability affecting millions of Americans [and Canadians]. It includes a series of impairments in social interaction and communication, executive functioning, sensory processing, and motor skills. Adults and children on the autism spectrum often require substantial supports and services and education across the lifespan.

Comments like those on the Savage Nation do real damage to autistic people by increasing public ignorance and misinformation about autism, thereby putting at risk vital education supports and services. Contrary to the remarks by Mr. Weiner, there is no evidence whatsoever to suggest that autism is over-diagnosed -- in face, research suggests that there is substantial under-identification of the autism spectrum, resulting in lack of vitally needed services and education. In addition, these remarks revive outdated and damaging misconceptions about the source of autism, recalling the "refridgerator mother" myth in which parents were blamed for having autistic children.

Talk Radio Network's sponsors must consider whether or not to associate with the hateful and offensive comments spoken by Michael Weiner. Because TRN has taken no action, we urge you to communicate the need for Mr. Weiner's immediate removal by withdrawing sponsorship for TRN's programming. There are over 50 million people with disabilities in the United States representing approximately $200 billion disposable income. We represent a market that cannot be ignored. By disassociating your businesses from the ignorant and hateful remarks made this past week and taking practical steps to help educate the public about the true nature of the autism spectrum with other disabilities, we can move forward towards creating a world that will recognize the rights of all people to respect, dignity,support and inclusion.

Ari Ne'eman
President
The Autistic Self Advocacy Network
www.autisticadvocacy.org

While an advocating Adam and family enjoy a first real quite a summer, he has also enjoyed camp every day. It's not an autism camp -- just a camp he goes to with other kids...talk about social skills! Adam is the most popular kid of the juniors! Imagine that for a child who can barely speak. Imagine the children who are evolved enough to understand him.

All the kids want to be with him, and as a mom, I am stupefied in sort of a proud and delirious way. Adam arrives home and swaggers with confidence -- the kind I want to bottle up and give to him for the rest of his life. Have I contributed to that in any way? Or has Adam given me the joy and strength I am experiencing? One thing I know for sure is there is one message I want to give him -- life is too short to waste on people who don't care about you. I hope he can have that confidence which is the kind that can make one a strong self-advocate. I also want to bottle the essence of child-like acceptance and give it to every person he encounters throughout his school years. So, I am working towards that -- I am about to announce an major inclusion initiative we are undertaking with another agency here in Toronto.

While keeping you on edge for a little while longer, though, Adam came home this week with his first-ever award. He was given The Best Effort Award.
I tend to think those are the best awards. You can win easily, or win with tons of effort. The person who has put in the tons of effort is the one we ought to celebrate.

Adam also returns home with a printed piece of paper with his certificate that reads, "Adam is always smiling and laughing during the camp day. His attitude is so positive towards campers and staff members. He loves to go to arts and crafts so that he can show off his wonderful creative side, and make wonderful pieces of art!" And aside from this his swim instructor wrote, "Adam's confident and easy-going attitude has made him a pleasure to teach...Adam is a lively, happy swimmer in our swim class..."

Mr. Weiner's remarks, as many of you have said, indeed lived up to the Savage name. Savage is primitive -- lacking in evolved intellect and robust with an ignorance that suggests he has never met the Adam's of the world, our autistic children, who need our love and support. Yet, as you see Adam below learning how to build with his grandfather, autistic people are able people too. The savage storms swirl, and yet, here we are. Adam for one, is the gift who keeps on giving.

It's Up and Running Again

2008-07-24T17:53:00.001-05:00

The Autism Acceptance Project website is back up and running.

The Autism Acceptance Project Website

2008-07-23T09:46:00.002-05:00

Hi everyone,

Aside from working on a major project which will be announced, Adam and I have been having too much summer fun to write. However, I do wish to advise that our TAAProject website (www.taaproject.com) is temporarily and accidentally down. We don't know if we will be able to fix it quickly. Please be patient. We may have to rebuild it.

Fits and Starts

2008-07-14T12:10:00.002-05:00

Yes, that's how I feel my recuperation has been. After a wonderful week in San Diego with Dad of Cameron, Autism Diva, One Dad's Opinion and Asperger Square 8, and the folks at University of San Diego, I came home, picked up Adam and we headed to a hot and sticky Florida to be awestruck by the possibility of Bertha hitting Miami. Then, we left. Adam has been having a terrific time at camp. He is the best swimmer of his class, and he is the favorite friend. So I hereby state that it's totally possible that kids can be "social" even without language!!

I am loving watching Adam get on the school bus, or strut back off after his first long days at camp (they used to be half days but now they go 9-5). He is totally happy. His friends also think that he's "very smart." Fancy that for a kid who can't respond typically.

So, while I got caught back in bed with threatening pneumonia again (which is why I don't write much), I want to share the "phenomena" with those out there who don't believe that non verbal autistic children are social or intelligent.

I am catching it all too -- on tape. And once I can figure out how to get more gigabites on my computer, I'll be mak'in more movies.

Way to go Adam! You make your mama proud!

Despicable

2008-07-07T16:23:00.013-05:00

To whomever wrote to Adam on his blog, you are the reason why I chose to privatize it. I thought that so far, everyone has been so kind to him, but I was waiting for the day that someone like you would show up...sad but true.

How dare you call my son's words "gibberish" and if I ever find out who you are, I will hunt you down. And yet, cowardice hides behind the veil of anonymity -- so should I waste my effort or shine a spotlight on you -- no better than the dirty, scurrying cockroach? As such, you are a coward to pick on a little boy's words.

Such comments from adults to children are NOT acceptable, and it such doubt of autistic individuals that confront them every day. It is not fair to children like Adam who work so incredibly hard to communicate.

If you have something to say to me, I am fully armed to take it. He, however, is not. An autistic child is still a child. No more, no less.

For our loyal and supportive readers, be not discouraged. I have to do what I have to do as Adam's mother. However, we can invite people who choose to email us and reveal something of themselves, to read his wonderful blog. The whole point of course, is to share and celebrate our successes with one another -- to touch and encourage each other. In the end, to value what we all do offer. Who knows, it may go public again once my rage dissipates.

Laughter at the Airport

2008-06-26T11:17:00.004-05:00

I am sitting in the San Diego airport waiting to go home and see my family that I miss. As I take a look at what happened over the past week, I stumble over San Diego Fox News, where I burst out laughing at what I see -- photo of me in my worst possible state after major surgery in the hospital with Adam this past May.

I can't wait to tell you more when I return home about the fabulous Autism Hub bloggers I met down here and the wonderful folks in San Diego.

At least I'm laughing and happy. I caught my cancer early, I will survive, I made it to the conference, and I have a happy and healthy son.

Ah, the laughter... the joy.

San Diego

2008-06-25T00:09:00.010-05:00

I'm in San Diego -- the Work With Me, Not On Me -- and I must say that I'm really enjoying meeting many other Autism Hub Bloggers here: Autism Diva, Asperger Square 8, One Dad's Opinion and Dad of Cameron.

We've all been busy presenting, and Steve and Bev have been on the radio which you can here hear by clicking on this link.

Today, Adam graduated Senior Kindergarten (Pomp and Circumstance and all), and my family has been sending me so many photos. I hated to miss it, but while I'm here, I know I'm also speaking for Adam's future. I delivered my Mismeasure of Autism: The Current Basis of Autism "Advocacy"presentation which is being published this July in Wendy Lawson's Concepts of Normalcy: The Autistic And Typical Spectrum. The audience has been really interested, asking great questions and I must say that the reception at the autism conferences lately has been very refreshing.

In the meantime, Adam and I are sending SMS messages to each other. As he doesn't like the phone, we've found a new way to communicate. We found yet another way to adapt.

He Did It!

2008-06-20T13:54:00.009-05:00

"We Jews, we dance," said Elie Wiesel in a speech he gave in Toronto just over a year ago now. I had the honour and privilege of meeting him in person. He was talking about how exactly BECAUSE of tough times, is reason to celebrate good ones. This is a philosophy I don't take for granted. Adam has just graduated from Senior Kindergarten and will be going into Grade One in September.

"It has been a tremendous joy to work with Adam this term, and to be a part of his progress. Adam has exploded into independence...the greatest achievements Adam has seen in language this term have been in the area of self-expression. The work he is doing in and out of the classroom with his device has built his confidence and allowed him a very important and impactful release," says his report card. Adam goes to an inclusive school -- not special ed, not an autism school, not a contained classroom or a partially integrated setting. Adam is also "classically" autistic.

The tough times for us seem to have been society's view of Adam, and schools adopting that exclusive, medical perspective of autism. Adam's challenges came from early pre-schools that didn't understand him and thought he had to develop just like other children. That was frustrating and emotionally debilitating for us all. Yet, we kept seeking loftier goals. We never believed in "NORMAL," and resisted many temptations to work "on" Adam to make him such. It never would have happened anyway. When we tried (in our early intervention days), Adam cried a lot.

In his book Enforcing Normalcy, Lennard Davis said, "before the early-to-mid nineteenth-century, Western society lacked a concept of normalcy. Indeed the word normal appeared in English only about 150 years ago, and in French fifty years before that. Before the rise of the concept of normalcy, there appears not to have been a concept of the normal; instead the regnant paradigm was once revolving around the word ideal. If people have a concept of the ideal, then all human beings fall far below that standard and so exist in varying degrees of imperfection. The key point is that in a culture of the ideal, physical imperfections are seen as not as absolute but part of a descending continuum from top to bottom. No one, for example, can have an ideal body, and therefore no one has to have an ideal body..." (pp. 100-101)

And so, we dance, we celebrate Adam's being, his achievements. We congratulate everyone who has assisted us in enabling him and his own personal success. I cannot imagine the world without Adam as he is. Our world has oversimplified the state of being human and to support this, I would like to direct you now to listen to Harriet McBryde Johnson who talks about disability and the notion of "the cure." Harriet McBryde Johnson brought a disability rights perspective to bear on issues raised by the Museum's Deadly Medicine exhibition. This podcast comes from United States Memorial Holocaust Museum.

Reference:

Brueggemann, Brenda Jo, Garland-Thompsan, Rosemarie, Snyder, Sharon L., Disability Studies, Enabling the Humanities, New York: The Modern Language Association of America, 2002.

Proud Mom

2008-06-17T11:40:00.007-05:00

School is almost over and camp is soon to begin. In closing the school year, Adam did a timeline of his life which you can view on Adam's own blog here.

I am swelling with pride for all the hard work he has done and I am that he's had a wonderful year at a truly inclusive school. Every day Adam always looked forward to seeing his friends there and started initiating "peer interaction." (I don't like using over-used terms, as they come to reflect what is otherwise known as "appropriate peer interaction" as opposed to simply peer interaction that may appear atypical -- or of peer interest that may appear atypical to onlookers).

I also verified this year that Adam's verbal communication cannot reflect what he thinks and how sophisticated he is. For instance, if I have a family albumn, he may say "dog" for daddy, deferring to an easier "d" word he knows. However, if he labels them with the written form, he can match names to his family members easily.

It's just an important point I want to make. Speech is not always as reliable as text.

What Can We Learn From "Jerry's Kids?"

2008-06-13T07:58:00.005-05:00

What can we learn from Jerry's Kids? A lot, I'd say. How often do we hear relentlessly over and over and over again that so-called "high functioning" people do not have a right to talk for all autistic people as if they are "taking away services" rather than adding to better the quality of life for everyone?

Here are some myths that need dispelling yet again:

1. A non verbal person can often read. These are people often called "low-functioning," but they can often learn to communicate via augmentative communication methods. Very often, these possibilities are not tapped because behavioural interventions are sought first -- the typical response is sought instead of enabling the autistic response;

2. Some parents call their children low functioning when they are higher functioning than my son Adam. I've heard parents in the beginning of our journey who said they would "institutionalize" their child who could talk more than Adam could. Some call their children non verbal even though they speak fluently, because they may have trouble with following directions. This is mis-labeling, so we cannot trust the use of labels used by many advocates;

3. We should not assume that "richer" people have more access to services and therefore can "cure" their children easier. Yes, one can hire private shadow support, and other therapies, but do not assume that a person who has more resources does not want to advocate for full inclusion and support of autistic people, and make this accessible as a right for all. At the same time, "richer" people have also wasted a lot of money on "therapies" that have not enabled their children to the fullest extent;

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

Okay, I could go on with the hypocricies, but it's better to show than to tell. Visit the website www.thekidsareallright.org, for a little history lesson on "Jerry's Kids." Watch how some disability rights advocates are blamed. Sound familiar to autism???

The movie trailer can be watched here. When you watch it, you'll understand why I don't walk for Autism Speaks.

Inequaltiy, Discrimination and the Medical Model of Disability

2008-06-10T13:57:00.029-05:00

Some Reflections After Viewing Diane Sawyer on Social Justice and Autism

Despite all of our efforts (and it is quite an uphill climb), reporters don't listen to autistic people. I am continually surprised that an African-American woman reporter, who might remember a time when the Black Civil Rights Movement was considered extreme, would call autistic people "ill" even though she interviewed them. I was equally surprised when Diane Sawyer of ABC, asked rhetorically, "isn't it [acceptance] a beautiful way of expressing heartbreak?"

Well, no. I can't say that I am heartbroken in the least as a mother of a truly, classically autistic child -- a child who struggles with sensory issues and anxiety, but who is otherwise fully capable of learning. If I were heartbroken, our lives would truly be miserable, wouldn't it? I mean, what part do we parents play in feeding into stereotypes and how must we become so hypersensitive to these stereotypes so that we can give our children better opportunities than they have today?

What part does the medical profession play in pathologizing disability to such an extent that we are faced with the challenge of making real systemic change -- because our systems are based in the medical model, not the social model of disability? In other words, when will the public begin to listen to autistic people and not cast them aside as a minority group in this present environment of heavy oppression that weighs upon autistics, and on my mind, like the thick humid air of a Toronto summer?

ABC may be hearing, but it ain't listening. That kind of report that I saw in the clip was akin to saying that well, "you're Black...you really don't want to be White? We just can't understand why you wouldn't want to be White! You must feel terrible. You must be suffering because you are Black and not like us." Sigh. I guess they just find it so terribly hard to believe, intrinsic in those who like to admire their image in the crystal-clear water.

I have been interviewed lately (to be announced) and I am struck by the repetition of the questions regarding "the cure," and the relative comparison to the severity of disability and challenge, which tells me that there is a conceptual gap that hasn't yet been filled. In large part, the public can't get there so long as the medical model of disability reigns supreme and the social model is ignored, or is falsely perceived to be lead by a small band of "extreme" disability activists, or people who are, as Thomas Insel called us, "a nuisance." I mean come on! There are eighty million disabled people in North America, and our scientific discoveries, while making us live longer, will likely have many of us becoming disabled in our lifetimes.

In an era when an African American man has finally received an opportunity to become President of the United States, we really should all be shocked that justice for the disabled remains elusive; that in the wake of acceptance of diversity as an overall ideaology, 'neurodiversity' is scoffed at and ignored as trite; or that our educational systems remain as segregated today as were water fountains, schools and buses were for the "Negroes" or "Colored People."

No, today we live in a world where paradox reigns supreme, where everyone is a unique hypocrite, and where no one really listens to each other to really SEE that we do all want pretty much the same things in this life. However, equality does not mean that we keep paying the gatekeepers.

No one wants to be isolated, and yet, autistic people are some of the most isolated individuals today. Not because they do NOT want to be social, but rather, because "this isolation is indicative of existing social barriers experienced by adults with autism. Kudlick traces some of the different definitions of autism throughout the medical history. In the end, this article "casts disability as not just another 'Other,' it reveals and constructs notions of citizenship, human difference, social values, sexuality and the complex relationship between biological and social worlds." (Kudlick, 2001.) The idea that disabled people are viewed as different alone, can further emphasize inequality and segregation and discrimination that goes against social justice.

There might be no greater paradox than the public school system itself. Schools are a major social system of society. If there were any just policy shift, there would be no barriers to inclusion. Jenkinson argues that, "inclusive education is founded on the premise that all children, regardless of disability, are capable of learning and should be given the same opportunities to achieve, through learning, to the best of their ability." (Jenkinson, 1997) UNESCO, which the Ontario Board of Education is attending to, in the Salamanca Statement, says "regular schools with this inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society and achieving education for all." (UNESCO, 1994). Yet, the IEP, and the IPRC process here in Ontario, (The Identification, Placement and Review Committee Process for Students with Autism), leaves much to be desired in the process to such equality and inclusion. Instead, children are placed in contained classrooms or are partially integrated. The entire process is solely based on the medical model of disability, as parents wait and rely on prejudiced therapists and clinicians who maintain these barriers. Let us not forget to mention as I have numerous times, that NO policy board on autism in our school system has ONE autistic person on it. These are the barriers that inclusion would do without. Teachers would not graduate teacher's college without knowing how to accommodate and include every student. Policy committees on inclusion or autism would not proceed without many autistic voices on them.

"Dempsey and Foreman examine five types of educational therapies available to autistic students. They conclude that early and intensive educational support is the best method to treat autistic students. Once these treatments are successful, it is surmised that students can then follow a regular curriculum. Essentially, Dempsey and Foreman describe a deficit-based approach which places the problem with the individual. This follows the medical model of disability." (Sandra Broekhof in her thesis to York University: What's In It For Us?: A Social Justice Approach to Educational Services For Students With Autism.)

Sandra investigated the Ontario Ministry of Education to conclude, "it is clear that policy is based on the medical model of disability. As noted earlier, the policies have set up certain barriers that do not allow students with autism to be fully included members of the classroom or society. Policy leads to a certain way of viewing and dealing with learners with autism, as well as other learners." (p.16)

Hodge, of on Reflections on diagnosing autism spectrum disorders, an article in Disability and Society, says "he became increasingly uncomfortable with the extent to which giving diagnostic labels reinforces a system of provision that is about the potency of professionals and the impotency of parents in the lives of vulnerable children." (2005) Might I add, in the lives of autistic children and adults too? This over-reliance on the DSM IV-R is present in every aspect of education policy to the way society views autistic and other individuals with many aspects of human variance or atypicality.

The paradox continues: "Inclusive education is more than a method or a strategy; it is a way of life that is tied directly to the belief system that values diversity. Inclusive education is also a philosophical and practical educational approach which strives to respond to individual needs, and is intended to ensure equal access for all students to educational programs offered in regular classroom settings." (A Directive and Guidelines on Special Needs Education in the Northwest Territories). We often hear in our province that "everyone learns differently," and we are taught to respect that and make room for that. It sounds pretty nice. The Special Education Model, says Sandra Broekhof, "utilizes a philosophy that students with disabilities learn differently. In terms of students with autism, some of the services include music therapy and Intensive Behaviour Interventions. By utilizing the specific services available, the students can hope to be cured and can eventually enter the classroom. As well as using specific services, very often students with disabilities use a different curriculum than their peers. In this sense there is more segregation because the students learn different things. The assumption behind the Special Education Model is 'that every individual is unique but the services are not unique.' By focusing on services, and not individual needs, students with autism are classified and individual needs are not being met." (p.10) [bold mine]. This is the reason I do not support the ABA/IBI lobby in Ontario or in Canada. There is no one-size-fits-all therapy for any autistic person, and it should not be mandated that our children follow it.

"In order for individual Boards of Education to shift to a social justice educational model, there needs to be a shift in educational policies towards inclusion." (Broekhof) And yet, there are barriers. Ainscow and Cesar argue against the special education system as reflecting "assumptions, values and power relations." (2006). All of the services for autistic children and adults are aimed at curing and fixing. It is not until the child is fixed that they are accepted and/or allowed into mainstream settings. Consider as well, the autistic adult, who after the age of twenty-one, is presumed to have learned all they can, and are placed into group homes where the learning discontinues, and "quality of life" only goes as far as daily feeding and care. "People with autism are denied primacy and even agency." (Waltz, 2005) I know quite a few autistic adults now, and I can say that the learning never ends, the contributions to humankind, immense.

I am drifting further and further away from centres that seek to support all kinds of people with disabilities based on inequitable treatment. Instead of clinician-client relations, we need a system of support where self-determination is a given, where this responsibility and agency is taken for granted. I recently attended an event for a centre here in Toronto that sought funds to support it. Still, kids and adults are segregated and I was struck how the video's testimonials were only of the parents, not of one disabled person who used the services of the centre. Not even one on the stage! The MC kept calling users of the centre, "clients," but who is the client, really? They are not always the people going there. They are, once again, the parents.

In my view as a parent, I feel it would have been fine to interview me, but not without my son in the foreground. I feel that Adam always has to be with me when I talk about autism. This will be his fight, you see. He will have to face the same asinine questions about why he doesn't want to be cured and how his case as never as severe as the next person's. Adam can clearly write now that he wants to be able to talk, but I do not believe that he would want to change the person he is. Could anyone guarantee that a cure would not take away one's essence, one's way of being in the world, having been like that from the time of birth? Does he feel that he's really missing a piece of himself, or is it society that makes him feel that way -- or will attempt to? I do not believe a blind person feels they are missing a part, or really feel envious of sighted people when they have never experienced sight! In contrast, I am sometimes envious of the voluptuous senses that the brain cultivates in the absence of the proverbial five.

We parents still have a big role to play. My role as I see it is to include Adam, to advocate for him and get him what he needs while also teaching him that has to advocate for himself. Yet, I think we can be doing more as parents by moving towards options for families. More aides and shadows, and a move towards real inclusion as opposed to integration which takes the kids OUT of the regular setting and away from their peers. I would tutor Adam on our own time, but I wouldn't want him to miss out on any aspect of school, or have a special curriculum made up just for him. Other parents do need some respite time and that should be part of our community aide system. Adam enjoys the curriculum at his school and requires a means of responding in a manner that he can so he is enabled to participate. Special education, while it sounds good and may be peppered with the lovely language of "inclusion" and "acceptance," is still segregated and exclusive. It is the paradox of special ed and many of our centres and programs for the disabled today. They are still based in the medical model of disability which pathologizes autistic people, rather than views autism as an atypicality of humanity. Thus, we must consider putting more emphasis on environments and social structures as the real disabling and hurtful aspects of disability itself. We can no longer disguise insufficient services, systems and therapies with the language of acceptance. Acceptance is what acceptance does.

But out-dated, preconceived, tragic views of autism reign. Biomedical intervenors prey on frightened, ill-informed parents (see footnote) and a fearful public by using the medical model while ignoring the social model completely... and Diane Sawyer thinks I'm heartbroken.

I'm not heartbroken. I lovingly accept and celebrate Adam and all that makes him, him. I want for him a better world, and it is the autistic and other disabled adults who are paving the way.

My Footnote:

I said "ill-informed parents." In many respects, all of us are ill-informed. Many of us are over-informed which doesn't mean we are right, or something (like biomed) is scientifically proven to be effective for all autistic individuals, but rather, may be specific to the individual, whether they are autistic or not. Thus, over-informed may be akin to falsly informed -- information that is profuse but nonetheless false or not yet proven to be true. However, when I wrote "ill-informed," initially, I was referring to frightened, new parents to autism who are usually given access to biomedical interventions and behavioural interventions first, all based in the medical model of disability. I was once such a parent and admit to being a parent on a journey to learning, but committed to social justice for Adam and people like him.

Special Thanks:

Special Thanks to M. Sandra Broekhof for giving me her paper, What's In It For Us: A Social Justice Approach to Autism. M.A. Thesis, Critical Disability Studies, York University, 2008.

Other Sources Cited:

Ainscow, M. & Cesar, C. (2006). Inclusive education ten years after Salamanca: Setting the agenda. European Journal of Psychology of Education, 21 (3) 231-238.

Dempsey, I. & Foreman, P. (2001). A review of educational approaches for individuals with autism. International Journal of Disability, Development and Education, 48 (1), 103-116.

Hodge, N. (2005). Reflections on diagnosing autism spectrum disorders. Disability and Society 20 (3), 345-349

Jenkinson, J.C. (1997). Mainstreaming or educating students with disabilities. Routledge, Toronto.

Kudlick, C.J. (2003). Disability History: Why we need another "other." The American Historical Review, 108(3), 1-28.

UNESCO (1994) The Salamanca Statement and Framework for Action on Special Needs Education. UNESCO

Waltz, M. (2005) Reading case studies of people with autistic spectrum disorders: A cultural studies approach to issues of disability representations. Disability and Society, 20(4), 421-435

Concepts of Normality

2008-05-29T20:52:00.003-05:00

I am so proud to participate in Wendy Lawson's soon to be released book: Concepts of Normality:The Autistic and Typical Spectrum, published by Jessica Kingsley Publishers. Click here to order a copy.

The Autistic Rigthts Movement - NY Magazine

2008-05-26T07:59:00.005-05:00

A photo of Ari Ne'eman, of The Autistic Self-Advocacy Network from the magazine.

An interesting article on The Autism Rights Movement here in New York Magazine. The only trouble is how the writer generalizes that the "movement" does not see autism as disability.

As I'm not feeling too well, I can't write much but Kristina did write about the piece in her blog Autism Vox.

Autistic Kindergarten Student Gets "Voted Out" of Class

2008-05-24T09:46:00.003-05:00

PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn't like about Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class. To view full article click here.

When I read this I became outraged. The Autism Acceptance Project is working towards an Inclusion Initiative here in Toronto to ensure that this does not happen, and that aides, and services be included IN the schools, instead of taking autistic children out of them. This initiative should be announced in a couple of months.

For my fellow parents here in Toronto, being included in schools in the number one issue for families. Yet, many of us are turned away at the word "autism," without even a first introduction to our children. They are called "disruptive," (I could name a number of schools geared towards special learners that even turn away autistic children here in Toronto), even though many of them who manage to get in, benefit by being with accepting, flexible teachers, with aides, and with other children. I know of another family here in Toronto raising money so that families can afford to hire aides for their children and that is a very worthy cause.

In the case of Adam, his peers love him in his "regular" school. And we are working towards adapting his classes and schedule to his needs while he is still in the classroom.

Yet the label "autism" inspires fear of either the child or the cost of that child in large part due to the nature of former ABA lobbying. I hope we can all work together to ensure that our autistic children, by law, will never be turned away. I hope we can work together to show teachers that we learn to do by doing and we learn to include by including. I hope we work together to change attitudes towards disability and autism, and that Inclusion is understood -- services be brought to the schools, not via integration (which means partially taking kids out of classes)or mainstreaming (which simply means throwing the autistic kid in the class with no accommodation -- a kind of sink or swim method) but by full inclusion. I hope that we can bring in people to give our teachers the tools they need in order to understand how to adapt a curriculum.

Inclusion benefits everyone, for everyone belongs. We are witnessing this in Adam's school, and today, he is at another one of his classmate's birthday parties. Parents often come up to me to say that their children talk about Adam a lot and they are grateful that their children will live in a world where a person with special needs is not seen as alien or an aberration. We are lucky and I want everyone to be as lucky.

I Feel Therefore I Am

2008-05-22T16:33:00.006-05:00

I do not wish to suggest that having all one's senses intact makes one a better human. No. Humans have a remarkable ability to adapt and all humans indeed FEEL.

"One of the greatest sensuists of all time -- not Cleopatra, Marilyn Monroe, Proust, or any of the other obvious voluptuaries -- was a handicapped woman with several senses gone. Blind, deaf, mute, Helen Keller's remaining senses were so finely attuned that when she put her hands on the radio to enjoy music, she could tell the difference between the cornets and the strings. She listened to colorful, down-home stories of life surging along the Mississippi from the lips of her friend Mark Twain. She wrote at length about the whelm of life's aromas, tastes, touches, feelings, which she explored with the voluptuousness of a courtesan. Despite her handicaps, she was more robustly alive than many people of her generation." From Dianne Ackerman's A Natural History of the Senses, introduction.

I wish I knew how to make movies.I don't have good tools and am in the midst of imagining what I could do for Adam in terms of effects. Tools are everything.

Images of Disability -- Whose Making Them And For What Purpose?

2008-05-20T14:43:00.011-05:00

In a presentation given by student Dylan Walters, MA Candidate of Critical Disability Studies at York University, he focuses on the images of disability from the Afghanistan and Iraq Wars. I have many times announced how happy I am that Adam has a unique tool -- technology -- through which he is now able to communicate, and soon, make friends and accomplish many things. The rise of online communities is known to us all -- some one million YouTube videos are uploaded every day from around the world. The average YouTube user is twenty-six-years-old. As Dylan noted, "in a mere three years, YouTube has become a fixture in politics, business, education and entertainment." CNN debates and politics are a common feature and Amanda Bagg's video In My Language has reached hundreds of thousands of people. A good question, he asks, is if YouTube archives will be available in the future for historical research. Think of viewing them one hundred years from now. If so, we can continue to investigate how YouTube might have shaped our views -- from war to disability.

Below, Dylan showed (one of many -- I've only put one up here on this blog) shameless pro-war ads to inspire interest via the tragic myth of the disabled. Disability in many of the RAWA ads is the object of ridicule and bodies are rendered less valuable. Dylan says "injured soldiers in the media perpetuate the tragic/courageous myth peddled by many charities through media," and he cites a comment on YouTube: "LOL talking shit on YouTube is like competing in the special Olympics...even if you win your still retarded."

He asks "should there be an accountability on YouTube?" And then I questioned the same for blogs that proclaim their hate of autism or autistic people or the "neurodiversity movement," or some bloggers who mis-characterize autistic rights advocates because they don't inspire enough pity for autistic people. Should parents be banned from showing their children stimming in order to show the "worst" of autism (or any aspect of one's Person that should remain private, particularly if permission to publish has not been received) -- of course "stimming" as something terrible is a matter of opinion. Remember, every picture has its frame. Should Autism Speak's video Autism Every Day -- that frames autism as horrible for the purposes of raising millions of dollars -- similarly be banned? I mean, not one autistic person was interviewed and of course the point of view is terribly biased. No one questions that a parent might become depressed, but it is only a small piece of the picture being provided for public consumption. And folks, it has cornered the market.

These are very difficult questions, but ones that need to be asked because it means censorship. Yet, we do censor lots of other racist and hate-inspired material on the Internet. Why not when it comes to disability?

The bottom line here is that the use of people with disabilities for gaining support for war -- or for charities -- explicitly without their consent is a matter of "use." No person should be used for any type of profit, for the whole purpose of BEING is self-determination. Every person has this right.

Below, I have posted the Afghanistan video, then a video by a group OUTSIDE OF THE BOX, who does the same kind of thing that The Autism Acceptance Project promised it would do -- let autistic people do the work and make the films. Next time you see a clip, a report, or a YouTube video, maybe these are the kinds of questions we need to be asking.

I Am Love

2008-05-18T09:40:00.003-05:00

Lately, Adam is really interested in collecting objects, touching them, looking at them closely, adding them to his collection -- rocks, teddy bears (which he talks to and names), dolls, pretty things, trophies belonging to the older children of our house. So of course, I'm at a stage where like any other parent, I have to teach Adam that he can't have everything he sees -- that some things do not belong to him but to other people. Other things have to be paid for and we can't have everything we want. Also, some things are just so plain delicate, that you can't touch them, but look at them only.

Of course, this has begun when I feel that I can parent him less than I want as I am recuperating in bed. As other family members seem to struggle in watching him or enabling him with his device (I recognize that for me it is natural and for others, they have to learn by doing -- which they are quite successfully), I am frustrated. And then it happens, curiousity has broken glass.

Smash.

It happens once. A small glass sculpture by Montreal artist Susan Edgerly lay in pieces on the floor.

"No Adam," I say. "You cannot touch the glass."

He goes and does something else and a half hour later, another splattering of glass tinkling like bells on my limestone floor brings me downstairs again.

"No, Adam." I say a little more firmly.

"Don't yell at him," says my mother-in-law. But I do not yell. I am as firm as I would be with any other child except that I bring Adam gently upstairs and pull out his device.

I write, "You cannot touch and break the glass. Why did you do that?"

"because touch is interesting," writes Adam. Indeed, he's been more curious than ever -- touching everything and soaking it all in that I hate to take experience away.

"Okay," I write, "it is interesting and glass is very pretty. But you cannot play with glass and break it. You cannot break it."

"You are hot," he writes.

"Does hot mean mad?"

"yes"

"I am mad because mommy told you once not to touch the glass and you did not listen to mommy."

"I silly joke on you."

He begins to feel bad and pouts.

"Why do you want to make a silly joke on mommy?"

"because I silly," he begins to whimper.

I write, "I love you and I want you to learn from mommy. So when mommy asks you not to touch something, I want you to listen to mommy."

He turns his head towards me and looks straight into my eyes and then writes "I am love."

Now what do you do with that?

(The glass has now been put away).

Ignored

2008-05-17T11:53:00.014-05:00

"If I participate, knowingly or otherwise, in my sister's oppression and she calls me on it, to answer her anger with my own only blankets the substance of our exchange with reaction. It wastes energy. And yes, it is very difficult to stand still and to listen to another woman's voice delineate an agony I do not share, or one to which I myself have contributed." (Audre Lorde, The Uses of Anger: Women and Racism)

It does not sound like progress is being made at IMFAR in London, UK, from the comments from my post made on autism research yesterday (see yesterday's post below). Non autistic researchers, profiting from parental fear --societal fear, even -- about autism does not wish to hear the autistic person -- be it aspie or non verbal autistic typing out a sentence. I wish I was at IMFAR because as a parent I am angry and I am using that anger, as Lorde suggests we do as she refers to the divide between white and black women:

"The angers between women will not kill us if we can articulate them with precision, if we listen to the content of what is said with at least as much intensity as we defend ourselves against the manner of saying. When we turn from anger we turn from insight, saying we will accept only the designs already known, deadly and safely familiar."

Autistic people, when they speak up about oppression are accused of being "too high functioning," and "not like other severely autistic children." Some parent will always stand up and say how their plight is worse than the person standing in front of them. And for what purpose? In order to squelch the words of autistic people who only want better for every autistic person everywhere. What do parents fear? This lack of services? This lack of respite? That won't happen if we truly support autistic people everywhere and include them in society.

Is the fear of one's own failure for having a child that you don't really want to have? One with "problems?"If so, whose problem is it, really?

What fear do the scientists have by being challenged by autistic people about ethics and standards? Do they fear their tenure, their jobs, their reputation, their paycheques?

Would it not service us all to talk about it openly and out loud so that this useless research -- much of it supported by Autism Speaks -- actually gets funneled into assisting and dignifying the rights of autistic people living today! Let's call it an excavation of honesty, as Lorde put it once.

"Any discussion about among women about racism must include the recognition and the use of anger. This discussion must be direct and creative because it is crucial. We cannot allow our fear of anger to deflect us nor seduce us into settling for anything less than the hard work of excavating honesty; we must be quite serious about the choice of this topic and the angers entwined within it because, rest assured, our opponents are quite serious about their hatred of us and of what we are trying to do here."

I wish I was at IMFAR because the autistic people standing up and speaking out are speaking for my son and his future and I stand beside them in their struggle.

Here is a recent picture of me two days after surgery in the hospital with my autistic son, Adam. I look as anyone would after major surgery. Look at the concern on his face. And I can imagine all the "experts" at IMFAR calling people like him "not aware" or "incapable of empathy."

They do not live and experience the likes of him outside their labs everyday. Some of them might even call him "severely autistic." Some might say "moderate." Some of you even have the nerve to write that your child is somehow worse off than mine and doomed to an institution, yet, when I meet those kids, they are even more verbal than my own son!! I watch ablest videos (I am compiling a post of videos that some parents and governments make to reflect the "worst" of their child -- stimming --- and this is the most horrible thing I can imagine a parent doing for a child in the name of "helping" them).

Yet, I am hopeful that the autistic individuals at IMFAR march one step closer to actually being heard. I am hopeful that it is not wasted energy, even though it feels so often to be the case.

I end with a movie you can watch this weekend: Music Within. The struggle has gone on for a very long time.

Does Autism Research Support Humanity or Human Deviance?

2008-05-16T08:02:00.010-05:00

Does Autism Research Support Humanity or Human Deviance for Profit?

McMaster University is doing autism research. Autism Speaks raises a lot of money and some of that goes to our researchers based in Toronto and in Hamilton. Much of the money goes towards research to detect autism early or towards preventing or curing autism. The purpose of early detection is for early intervention. The concept of early intervention is derived from a medical model where the earlier diseases like cancer are detected, the better the chances of living. As a person recently diagnosed with early ovarian cancer, I can attest that in the case of mortality, I am thankful for early detection. However, in autism, the premise of early intervention isn’t that much different than the cancer model – children begin to undergo a rigorous process of “becoming normal,” and are taken out of regular daily life, because they are not deemed “regular.” They are viewed as sick.

So it is with skepticism and interest for me to read of the recent research done at McMaster University of eye tracking as seen in The Globe and Mail today. The idea is that at nine months of age, we might be able to detect autism because it is assumed that autistic babies do not follow changes in eye direction. The early diagnosis is to find those children at “high risk” for autism.

I didn’t know my son Adam was such a risk. A risk to whom? I have to assume he must be seen as a risk to society, even though our friends enjoy him and he is living quite well. If living well means to receive an aide to assist and a teacher who understands so an autistic person can learn, then I feel that that is where the money should be spent. I also can’t say that he would have passed or failed that eye-tracking test and it’s my guess that with the ranges of autistic people out there, the test will not be very reliable because there is not one general assumption in autism that is universal for every autistic person. Adam’s eye contact seemed okay, maybe a little inconsistent. It was his play and interests that were different – the ones that also gave him an exceptional ability to read and correct his classmate’s work because of his ability to SEE the things they cannot.

Further, “the probability of a baby developing autism,” as stated in the article, would not apply to us. While individuals may develop autistic-like behaviours, it’s not necessarily autism. I can attest that dear Adam has been autistic since birth and probably in vitro. His wide almond eyes were curious and clever from the moment he was born. His surroundings were already an assault on his senses.

So where does this leave us? All this money being spent on finding earlier interventions to make our children less autistic? All this money being spent on tests that do nothing afterwards – they do not advance inclusion or eradicate fear of human difference so that our children receive fair and equal education and opportunity. No one is really working to understand and respect how autistic people learn so that our kids can become part of the world. No, early detection is still eerily angled at eradicating human difference.

In her essay Age, Race, Class and Sex: Women Redefining Difference, Audre Lorde writes:

“Much or Western European history conditions us to see human differences in simplistic opposition to each other: dominant/subordinate, good/bad, up/down, superior/inferior. In a society where the good is defined in terms of profit rather than in terms of human need, there must always be some group of people who, through systematized oppression, can be made to feel surplus, to occupy the place of the dehumanized inferior. Within this society, that group is made up of Black and Third World people, working class people, [autistic and other disabled people], older people, and women.” [Brackets mine]

She notes how it is the underclass, or oppressed groups, which autistic individuals have described themselves, that are expected to bridge the gap, change, be cured, act normal, rather than society who also makes a concerted effort to understand, accommodate and accept difference:

“As a forty-nine-year-old Back lesbian feminist socialist mother of two, including one boy, and a member of an interracial couple, I usually find myself part of some group defined as other, deviant, inferior, or just plain wrong. Traditionally, in American society, it is the members of the oppressed, objectified groups who are expected to stretch out and bridge the gap between the actualities of our lives and the consciousness of our oppressor. For in order to survive, those of us for whom oppression is as American as apple pie have always had to be watchers, to become familiar with the language and manners of the oppressor, even sometimes adopting them for some illusion of protection. Whenever the need for some pretense of communication arises, those who profit from our oppression call upon us to share our knowledge with them. In other words, it is the responsibility of the oppressed to teach the oppressors their mistakes. I am responsible for educating teachers who dismiss my children’s culture in school. Black and Third World people [and autistic people] are expected to educate white people as to our humanity. Women are expected to educate men. Lesbians and gay men are expected to educate the heterosexual world. The oppressors maintain their position and evade responsibility for their own actions. There is a constant drain of energy which might be better used in redefining ourselves and devising realistic scenarios for altering the present and constructing the future.” (P.p. 114-115 Audre Lorde, Sister Outsider, from her essay Age, Race, Class and Sex: Women Redefining Difference)

I know of so many autistic individuals who fight the good fight every day -- who have to justify their existence and intelligence and disability as autistic people. Moreover, the idea of "pretending to be normal,"a title of a famous autism book, is echoed in Lorde's statement -- that the onus is on the oppressed group to change and no effort should be made on the part of the non oppressed group. That is the entire premise upon which most autism therapies are based and built.

Rather than focusing research on eradicating difference (in this case autism), it should serve to examine the way we include autistic people in participating in research and on boards of directors and on the way we use autistic strengths to educate and include autistic children in the classroom. (Must I mention AGAIN that no school board here in Ontario has an autistic person on it??) The Globe and Mail article on eye detection tests for early detection of autism does not make clear how it will better and enhance the lives of autistic people. It does not mention how to tap into autistic learning style and strength. It seems more clear that the onus will still be on the autistic child to change -- to appear and become less autistic, even if it's all just pretense.

“Too often, we pour the energy needed for recognizing and exploring difference into pretending those differences are insurmountable barriers, or that they do not exist at all. This results in false and treacherous connections. Either way, we do not develop tools for using human difference as a springboard for creative change within our lives. We speak not of human difference, but of human deviance.” (p.p. 115-116)

We must not refuse to see the challenges that autistic individuals face, and I find it surprising that people still think that disability is a bad word, or that accepting autism means we don't educate autistic people. We must begin to re-imagine disability and autism. We spend so much of our energy mourning, eradicating, detecting and in the meantime, our children get locked out of schools, even “special ed” schools, or they can’t go to camps with shadows and become excluded from so many programs and from life in general. Kids also generally get locked into categories -- special ed, normal ed, or gifted ed. But what of Adam who is both gifted and disabled? Believe me, there is no clear cut line when it comes to intelligence and disability. Autistic and other disabled people are not allowed to go to school with aide dogs or devices. They are viewed as a "disruption" to the classroom and are often turned away before even a first meeting. Many parents have called us up at The Autism Acceptance Project, disgruntled and upset with a system that simply excludes the autistic child or that separates them from their siblings. Furthermore, an ABA supported program which removes the child from the classroom is simply another form of institutionalization and segregation. It is also sadly a method which seeks to have a child respond normally, which is a kind of pretense as well, as opposed to enabling autistic response. It will not work to benefit autistic people in the long-run.

The barriers that exist do not lie within the autistic individual, although they do face many challenges. Most of the barriers lie in attitude towards disability. We spend so much money to affirm over and over again that autistic people are less valuable and deviant. Autism Canada has mimicked the Autism Speak’s style commercial to make autism appear like a horrible epidemic. They shamefully have objectified the autistic individual in order to raise money for the questionable research I have mentioned here. Adam and every other autistic individual need not/must not be objectified in order to be viewed as society’s surplus, or an object for research funds. So far, I’ve found little research that has actually shaped the lives of autistic individuals for the better.

Adam is the best. He works hard, he is smart, and he can type now. He is human. He is different AND equal. Once our autism research is developed on that premise of "different and equal" maybe, just maybe, our children will no longer be used for profit as the “surplus members of society,” or media entertainment, but rather, come to be viewed as valuable members of our community and thus, better able to contribute to it.

Reference:

Audre Lorde, Sister Outsider: Essays and Speeches, Toronto: Crossing Press, 1984.

Emboldened By Many Silences

2008-05-15T14:43:00.007-05:00

I had my second surgery a little sooner than expected due to a lot of pain. Here I am last mother's day in the hospital. I am at home, tired now. Groggy as I write.

Audre Lorde said, "what I most regretted was my silences." She wrote about feminism and her breast cancer, and I too believe that staying silent is NOT useful when we have so much we have to learn and share with one another. "What are the words you do not yet have? What do you need to say? What are the tyrannies that swallow you day by day and attempt to make your own, until you sicken and die of them, still in silence?"

I try to test my silence and put it on the loud speaker.

Today I write:

The leaves of spring begin to glitter
the warm sun across my face
I try to heal under it
my womanhood taken
fear forsaken

I am more a woman today
than I was with a womb
more a woman today
with delicate crepe lines
weaving my hands that still work
more passionate today
than when I screwed to be loved

The sun bakes me and I rise
to learn
to heal
all the wounds
of a young woman

I rise to walk bravely
towards the power of this newer, older one.

-----------

And now for a little ditty:

In The Wake of ...

2008-05-06T08:53:00.006-05:00

doubt, fear, criticism, I become stronger. I need to write and verbalize in order to move through experience, find joy, and learn.

Today, I borrow the words of Audre Lorde, for she speaks for me right now. Some people have explained that to be silent through their experience or their fear -- be it having an autistic child or a cancer, should be kept private. But this doesn't work for me. I have spent time considering this, and if I am wrong to make public what is so private for others. But what are we if we the village do not share, because we can make each other strong.

In "The Transformation of Silence into Language and Action," Lorde writes:

"I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood. That the speaking profits me, beyond any other effect...for it is not difference that immoblizes us, but silence."

And for those who have had such a difficult time understanding the Joy of Autism, (which I don't really care because it seems those people only have political interests, not emotional ones):

"And most of all, how do I fight the despair born of fear and anger and powerlessness which is my greatest internal enemy?

I have found that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces aligned against us. It means teaching, surviving, and fighting with the most important resource I have, myself, and taking joy in that battle. I means, for me, recognizing the enemy outside, and the enemy within, and knowing that this work did not begin with my birth nor will it end with my death. And it means knowing that within this continuum, my life and my love and my work has particular power and meaning relative to others."

I guess that's why I have been writing for books and this blog on autism for 3 years now. Of course, she is talking about her breast cancer, not autism, and I deal with a different kind of cancer. And I'm certainly NOT comparing autism to cancer, but it does seem relevant to compare her strength and will to find joy in her breast cancer and experience. It seems a shame that there are people who want to make autism comparable to cancer or a tragedy for political gain, not the benefit of autistic people, for our kids (and autistic adults) are full of such life. It is so important to move through despair.

Brief Thoughts on the Body

2008-05-03T19:59:00.009-05:00

Lorde gives voice to her "feelings and thoughts about the travesty of prosthesis, the pain of amputation, the function of cancer in a profit economy, confrontation with mortality, the strength of women loving, and the power and rewards of self-conscious living." Lorde powerfully weaves together the three literary forms, allowing her to leap from raw expressions of pain to her inimitably astute social observations.

Guess what I'm reading? Sure, I'm a little scarred, but like Lordes, and after attending some of lectures today for the graduate program I am beginning in Critical Disability Studies, I do believe that cancer is just as much an industry as autism (moreso, actually) and the way we conceptualize the body as "doing and being done to." I'm not saying that industries and economies are inherently bad, but we can't just move through this blindly without realizing what influences the way we think and feel and HOW it does that. In this sense, I refuse to be yet another "victim." You likely won't find me running for the cure, but instead, talking honestly about experience.

This is just a beginning. I am thinking about the body, the social body, the "transgressive" body and how we choose to encounter it and how disability exists as an interpretation between bodies.

As for me, I have been amputated once and will be amputated again soon. I will be either temporarily or permanently disabled in some way. So, I also struggle to view disability/ability in a "corporeal normalcy binary" (Eliza Chandler, "Transgressive and Transformative Bodies: A Proposal for Evoking New Imaginations of Disabled Bodies for Disabled Youths") because we are never constantly one or the other. We are all sometimes disabled, and sometimes abled.

It's time aggressively destabilize current notions of disability. Contrary to what Harold Doherty wrote about me in a recent post about Reverent Wright and his speech Difference is Not Deficiency, for which I mistakenly wrote "deviance," disability writer Tom Shakespeare notes that normalcy reinforces deviance, so I extend this to ideas of abnormality, illness (as autism is often described) and so forth.

Instead, there exists diverse embodiment in our world. We are always shifting, and never resting in the binary.

I can say so myself. I can say so for Adam.

Things Are Going to Change

2008-05-02T09:03:00.005-05:00

As I put my Adam to bed last night, I hated to imagine that I couldn't smell his skin -- still young-smelling -- or feel his soft hair against my face one day. I lay there as he slept, listening to his breath, thinking that I would give anything for him. My love for him is so gigantic that without him, it feels almost meaningless. I would hate to miss is not being around to feel it and see it anymore.

Things are changing so fast, that it feels surreal. It feels a little like when we parents get that first autism diagnosis, but also different because now I don't know what's going to happen to me. With our children, we learn to live with uncertainty, for we MUST find the joy in everyday. And I really, really want to do that now, even if my situation becomes worse. I am one who likes to prepare for everything, even though I am an optimist nevertheless.

Things will change fast, they always do. We can't stop the flow of time. I dedicate this song today to my family. I used to be a musician and a singer in my day. I used to sing in bands, play the piano and I sang and played this song. It is called WINTER and it meant so much to me when I was young, and now its meaning has taken on a slightly different note:

Blogging Against Disablism Day

2008-05-01T07:45:00.005-05:00

I'm not going to do it because when it has already been done so exceptionally well, then I should direct you instead. Read Ballastexistenz today.

Also read Club 166 blog "Eugenics with a Smile."

Listen

2008-04-30T08:39:00.011-05:00

Now it is no secret that I am going through something – borderline ovarian cancer. I consider myself very lucky. If I had waited and not followed-up with some symptoms last fall, I may have ended up in some Stage 3 or 4 situation, and my chances of living would be poor. Like all parents, my fear is that Adam would not have his mother and that I would miss all of the magnificent milestones he continues to have.

Here’s an excerpt from Michael Bernard Loggins, a man with developmental disabilities who wrote Fears of Your Life:

Fear #33:

“Fear of you never known you were gonna lost your mother is very sad and scary experience you have to face and learn from and you wonder why she has to die I love her – and I had loved her once while she were alive. Especially if she was the mother that raised you and the others through birth and you only wish that you could have done all you can to help save her life. It gonna be worse times and hard times for Michael Bernard Loggins and his sisters and brothers too. Especially when mother’s day comes.”

But my chances seem very good. Except for the unknown – what my next surgery may reveal, I have excellent chances of being totally cured for good. In fact, my first serous tumour was already taken out, and because of the high risk, I must have everything taken out. It’s no secret. Millions of people go through it every day, and they go on living. I know I am supposed to be emotional and mourn some kind of loss, and it may be premature for me to express any of it now, but I’ve had my wonderful child, I have four stepchildren who support him and who I have come to love deeply. While I can’t speak for how I will feel after my surgery, I can say that the most important priority I have is living for Adam and my family.

This post is about listening to your intuition. My intuition is something that I tend to listen to quite closely, and what kept me away from “experts” who really could have done more harm than good for Adam. I intuit people quite well – even though I may want to deny what I feel and “be nice” to people. That’s the way I was brought up -- to be nice. Sometimes I intuit things that frighten me because it sometimes means facing something difficult. I have even taught myself to ignore my intuition at times where people are concerned, only to have learned my lesson.

It’s the same now with ovarian cancer. “Listen to the whispers” is what ovarian campaigns tell women. What a wise line! The symptoms of ovarian cancer are so subtle that women usually do not discover them until they become severe. But I had some. They were small and quiet and they could have been anything. I began with ultrasounds – “it’s nothing,” said the doctors. “Pull out any woman your age from the street and they all have some kind of cyst.” But I wasn’t sure and I didn't feel they were right about me, yet I had doubts -- was I being paranoid? Yet, right from the time I had the first symptom and ultrasound, I had a feeling. I got to see my CT Scan. “You have double spine,” they said. “Look at that!” they were fascinated, pointing to the image, showing me. “Only one per cent of the population have a double spine!”

“But what about my cyst?” I implored, as it appeared dark and with some kind of mass beside it.

“Don’t get hysterical” said a secretary sitting in for the regular one at my geneoncologist’s office. I wasn’t getting hysterical. I was asking prudent questions. Why my CA125 kept going up; why I was getting uncertain results from my CT Scan. “You’ll be fine,” she said with a doctor’s assurance. She is not a doctor.

When I first visited the gyneoncologist in January, after the initial tests and after my wonderful GP seemed to "feel" something too, the doctor took a look at my healthy face and asked me questions. I have a lot of cancer in my family. But she said she wasn’t concerned. She did another CA125 and scheduled my MRI. “It’s probably just an endometrioma,” she said assuredly. CA125’s are unreliable in women my age. The test can rise with endometriosis, PMS, or benign cysts among other things. But mine kept rising.

Then, after the MRI, where I closed my eyes and imagined myself lying on the beach with a soft breeze for over an hour, I fell through the cracks for about another eight weeks. I heard nothing. I thought no news was good news…right? But in March, it was gnawing at me. I called my doctor. They had not received any results. I cringed at the thought of calling that secretary who called me hysterical simply for asking questions, and for making me justify not only my intelligence, but also making me feel guilty for taking up her time.

Immediately following my call, however, I was squeezed in to see the gyneoncologist again. “I was wrong,” she said, and Henry’s jaw dropped – he thought everything would be easy and okay. “It’s not an endometrioma. I am very suspicious.” So I had my first surgery scheduled the following week.

“It looks good,” she said after I was barely awake from the anesthetic, shaking until they bundled me in five blankets and administered morphine. Then, she was gone.

As I was (and am still recovering), I thought that my April 29th appointment for my pathology report would show up benign. Everything was supposed to be fine. Everything in the process of medicine goes so very quickly. Everything can fall through the cracks if you don’t follow up with our own health. It of course showed up borderline, as I mentioned yesterday. This time, she expressed her concern again, and recommended that I have another surgery to take out everything.

The entire time I felt it, even though everyone pressed me to doubt it. Maybe they were just afraid and wanted everything to be okay. Since that time, many of my girlfriends are getting themselves tested, but what I want to express to women is just listen to your own body. While everyone, including some of the finest doctors told me not to worry, and that I would be fine, there has been an issue with each subsequent visit. When my mother was sick for two years with pus running out of her eye, doctors told her it was nothing, until finally she was diagnosed with renal cancer. The point is, people are busy, most cases ARE benign, but it’s prudent to continue to pursue the feelings in your gut.

You have to listen to the whispers, be they physical or something deep inside telling you something. You even have to listen to all your fears and move through them, I think. For my health, listening may have just saved my life. For my son, listening to my own instincts may have, in many ways, saved his, for he is doing really well without popular “interventions.” (Early interventions, folks, are for serious, life-threatening diseases, not for people with disabilities like autism who deserve assistance and an education). The process of studying and educating him has been following him and trusting myself -- not listening exclusively to other people, but gathering the information and becoming selective as to who can assist us. No matter who tells you how crazy or hysterical you are for not doing something that is popular, weigh it all in carefully, study, and then listen to yourself and your child. There may be fear, but we must all use it wisely, not let it use us up. Fear is harming too many autistic children as it is.

As for any fears I have at the moment, here they are so written and to be used usefully, I hope, by anyone who cares to listen.

All Truth Passes Through 3 Stages:

First: It is ridiculous
Second: It is violently opposed
Third: It is accepted as being self-evident

--Shopenhauer

Why I'll Always Remember 2008

2008-04-29T18:07:00.019-05:00

I relished in Adam's ability to form friendships with many children this year, and the many children who wanted (and continue to want) to be with him.

I learned who really supported me, even when we had BIG disagreements.

I am still recovering from my first surgery (with the happy face pendant) and I never knew that a photo with Lance Armstrong could symbolize for me, what lay on the horizon.

Yes, that's right, I'm a writer so I won't hide it, and I don't want pity. I have to have another surgery as I have borderline ovarian cancer. The next surgery will ensure I will live to ninety.

You can bet on it.

And you can bet I will not let anyone complain or compare autism to cancer or a "death sentence," either.

'When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.' -- cancer survivor.

Difference Is Not Deficiency

2008-04-28T09:49:00.010-05:00

Well how many of you were thinking what I was thinking yesterday while watching Rev. Wright's speech on CNN? "Difference is not deficiency" was his message as it related to race and religion. The man had me actually sitting upright in my seat, listening, laughing and enjoying every word and antic. I kept wondering why on earth so many people can't understand disability in the EXACT SAME WAY -- autism is a difference, not an illness, an abnormality or a deviance. Those people unfamiliar with my son's excited hand-flapping may not understand it, and may be so inclined to stare at it, and maybe even further inclined, by virtue of the crap they DO watch on Autism The Musical (I took issue with how some of the parents described their children as "ill." Otherwise, I absolutely LOVED the kids and found them so able and talented), or on CNN or whatever, that autism is a disease so that Adam's excited hand-flapping may seem like a pitiful thing to them, just as much as black skin was viewed back in the day.

Yet, as we were flying home from Florida yesterday, and he was watching a video of FRACTIONS (yes, fractions -- and he's just turned six years old), and he flapped his hands, I really thought nothing of it. In fact, I was joyful as it was something he was learning from (the video). And when he's happy, I'm REALLY happy. It’s his difference. When he’s happy and excited, this is how he will react to his environment. Now who on earth would want to “extinguish” that and why would that goal be so utterly important in those so-called early “intervention” programs? What are we “intervening” in? Aren’t we supposed to accept and assist? Please get rid of that term “intervention” – it’s so entirely insulting.

So it was such an irony this morning, when the big headline was "Hope For the Blind."(why I am turning this CNN on, I'm not so certain except to say I want to know what everyone is being "fed" in the realm of popular media)

Ted Turner -- please hear this: DIFFERENCE IS NOT DEFICIENCY. YOU CAN HAVE AUTISTIC NEWS REPORTERS, GUESTS -- YOU DON'T HAVE TO HAVE THE PRETTIEST PEOPLE. WE WILL ACTUALLY ENJOY WATCHING THE NEWS MUCH MORE IF YOU PUT REAL PEOPLE ON CNN.

Okay, sorry for that rant -- back to “Hope For The Blind.” I hope they get a new headline writer on CNN. Why not just say “new gene therapy offers possible sight for the blind?” They responsibly reported that the therapy is very risky, and only tried on 3 people successfully, and had actually harmed others in the past. Through the therapy, blind individuals cannot see fully just like cochlear implants don't enable deaf people to hear like hearing people do. Apparently, there are sounds, but not perfect hearing and in this case some light but not full sight. And still, not all blind people want to see. As Oliver Sacks has written and spoken about numerous times, many blind individuals don't understand why they would want to change a way they have been their entire lives!!! What a possibly frightening experience to have to relearn everything just because someone else thinks it’s better to see than to be blind?

Is this “intervention” and “therapies” for the benefit of others? Is choice a good thing here? That is, giving people the choice to have implants or not? Gene therapy or not? Or is this an expectation and a mandate under the guise of “choice?” In other words, there is really no choice at all. As long as we view the world as a homogeneous place where stronger and faster and the ability to compete is better (on the same playing field), then there is little choice, isn’t there?

As we move forward in our scientific discoveries, I don’t see the ethics getting any easier. But there’s one guide I do follow – it’s the one where when a “cure” is being preached because people think it’s better not to be disabled, or autistic, then it becomes grotesque. It feels Mengele, Nazi, and it frightens me that CNN as a channel has the power it does to dictate people’s lives and the way they think about everything. This is not “Hope for the Blind,” this is gene therapy being offered – and it could be the utter “Hell for the Blind” too.

When will our world understand that there are millions of people who live differently than many of us do? And not everyone wants to live like an American (or Canadian or whatever in the "first-world")? If we really want to know how the rest of the world lives and feels, then we have to watch their channels and read their books and listen, not assume.

I am happy to announce that I am a new graduate student of Critical Disability Studies at York University. I hope to continue discussing the differences in disability as they cross section with our discussions about race and religion, in much greater detail in the near future. Thanks to all of you who supported me through this.

The Autism Acceptance Project Update

2008-04-22T09:44:00.003-05:00

Many people are emailing me asking to read Adam's blog as it will soon go private. This is wonderful and I thank you for revealing yourselves because Adam's safety is very important. If you are interested, please email me at estee@taaproject.com.

Aside from this, many of you may not know that The Autism Acceptance Project (TAAProject) sends out monthly newsletters and regular Newsflashes. Our e-mailing list is growing quite a lot and there's a lot of information in those newsletters that may not be in the blog or on the TAAProject website (www.taaproject.com).

If you are interested in receiving newsletters, please email me, being specific in the subject line (RE: NEWSLETTER) and we will put you on the list (estee@taaproject.com)

Precious Growth

2008-04-18T09:24:00.009-05:00

As many of you know, Adam is really taking to typing. In two months, the typing has also instigated more talking in full sentences. It's as if I've offered him a window and now the floodgates are opening.

Let me begin by also saying that last week, Adam grabbed his own device in school and for the first time ever, asked for his father -- "daddy," he typed. He was asked again if he wanted daddy, and he typed that he did.

His magnificent shadow -- a young woman who has been with us for four years now -- told him that daddy could not be there and he was at work. She suggested that he instead draw a picture for daddy. Adam has drawn pictures before. Sometimes he writes mommy on them (well, he did once anyway), and he has definitely asked and typed for mommy a few times, but he has never drawn a picture for me without the bidding of some teacher's project.

Adam has never asked for daddy before and I wonder if it's because I've been in bed recuperating, and dad has had to step in with Adam a little more, that Adam has truly relished it. So, completely unaided, Adam did the drawing below for daddy -- he wrote his name, daddy's name, car, and drew his rendition of a car.

Needless to say, this picture is being treated delicately like an old Leonardo da Vinci drawing -- so light and delicate is Adam's hand that you can see his struggle for control -- which is why we're grateful for typing devices. If you saw him write letters by hand, you would also see his steely determination with the gargantuan challenge. This work of art will be well preserved, framed and displayed in an area for all to see in our home.

So a few things are happening in my mind these days about Adam, typing, communication and expression, and I wonder if many parents of non verbal children, or whose child's expression is delayed in various ways, feel it too.

First, there is a burst of language in sentences coming out of Adam as a result of starting our typing together. It's still not always clear, mind you, but he's talking more. It seems to have sparked something in Adam -- something that was already there, but perhaps didn't have the courage or know-how to come out, and it simply needed the little push. Think of it like opening a window in a room swirling with words, letters and thoughts, growing by the minute. That's how I like to think of it and the rate at which Adam learns.

Second, his drive to do that picture for his father completely on his own, I believe, also has to do with this window-opening as well as his need for relationship with his father, and just turning six and saying some very interesting boy-things, he needs a male role-model in his life.

And third, as a result of this new form of expression for us in this family, there are questions I have of myself as his mother -- the mother of a son first, a child second, and an autistic child, third.

This very intelligent little boy, with so many thoughts and conceptions of himself in the world, and IN RELATION TO THE WORLD, while I knew were always there without spoken language, has suddenly manifested in so many typed views of himself. It's not quite like having a child who is natural with spoken language -- the precocious little talker who always asks "why?" At least a parent gets a sense early on of the depth of responsibility in holding a child's ego like an egg in one's hand. Maybe (I can't say as I am the mother of one child and a step-mother to four whose own mother served them well), a parent just gets sort of immune to the child's ego. Maybe they learn ignore some of the precocious talking. Maybe they know when something serious is being said, and when something said is just an experiment.

For Adam, I believe that the same thing has happened and has always been happening, even before the typing. In some ways, it bothers me because Adam's ego and his thoughts and his way of thinking of himself in the world has always been there. All of those things I just mentioned, have always been there. His sense and ability to see people and know them -- like the child in the Emperor Has No Clothes -- has always been there. Yet, like many autistic people, he has been treated by many people (not all, thankfully, but many) that he never had the ability or capacity for such thought, such depth, such relationships.

My Adam, who notices how boys "should" behave and how he is "different", well -- tell me please -- how do you hold that precious little ego as it grows by leaps and bounds in your hand?

Out From Under

2008-04-17T12:32:00.005-05:00

The Royal Ontario Museum in Toronto presents exhibition on Canadian disability history

The Royal Ontario Museum (ROM) is proud to present Out from Under: Disability, History and Things to Remember, a powerful exhibit exploring Canadian disability history. A display of 13 diverse objects reveals a rich and nuanced history that pays tribute to the resilience, creativity, and the civic and cultural contributions of Canadians with disabilities. The first of its kind in Canada, Out from Under was produced in collaboration with students, scholars and alumni from Ryerson University and will be on display on Level 3 of the ROM's historic building from Thursday, April 17, 2008 to July 13, 2008.

Gregory L. Blackstock

2008-04-16T12:17:00.024-05:00

My son's gonna love this book. Gregory Blackstock, dubbed "an autistic savant" by Darold Treffert, is also called "an everyday anthropologist."

At age fifty-eight, [he] began a new and exciting chapter in his life. The retired pot washer walked into Seattle's Garde Rail Gallery to attend the opening of a solo exhibition of the drawings he had made over the past eighteen years, the results of a consuming pastime relatively few people knew about. Beaming with accomplishment and self-esteem, he introduced himself to complete strangers, escorted them to the pieces of his work, and urged them to read a newspaper review of the show posted on the wall beside his biography. -- Karen Light-Pina

Adam loves encyclopedias and dictionaries and he examines every bug, every stuffed animal. The book arrived this week as I recover from surgery and I have a sneaking suspicion it might be one of his favorite books of all as he studies each meticulously drawn category -- of birds, tools, musical instruments and more.

I feel as if I've come upon a treasure of a book as if it were tucked away in a small Parisian bookshop -- where collectibles are as much valued as is Versailles, Monet, baguettes and cafe au lait -- each shop displaying historical relics to be resold over and over again, and hopefully to never lose their significance as marks of both man and time.

It's the same feeling I get when I look at Joseph Cornell's Shadow Boxes -- that collectible spirit made into art. Cornell is another artist speculated to have been autistic. Collecting is a kind of spirit, or at least a spiritual act. I'm in the spirit to collect these days. I've not normally been a collecting kind of person. I admire the level of interest in detail and passion a collector has to have. I've been watching Adam collect rocks recently, and plastic animals and airplanes. I've turned my head to honouring his and perhaps my own collections as much as the thought process and sheer passion that goes into them, with particular displays and presentations -- artful in and of themselves. We give objects significance when we place them carefully in the architecture of our lives.

As I still lie in bed (second week now) recuperating and working from here, I've been bidding on antique typewriter letters on eBay for Adam, and a few old and electric typewriters, thinking of how he may love the clicking sound, and considering making his new bookshelf embedded with typewriter letters. I'm sure my husband will shake his head wondering where I'm going to put all of these typewriters -- but I have my ideas. I am also thinking I may be punished for throwing out all of Henry's old wine bottle corks -- so I hear cork is becoming 'extinct.' There they sat taking up precious basement space in large plastic bags, if not a testament to the wine, at least one to Henry's love of it. He said of them just lying there, I can make cork boards. Wouldn't that be a fun project? That was about ten years ago. He has has since taken up golf.

Adam's fascination has opened up new worlds for me and I want to spend time, well...collecting not only myself, but the things that make our lives meaningful. For things are only things until we give them a place in our lives - for better or for worse. I think the things that we love should be our relics. We should give them places of honour. They do, after all, mark our time here upon this earth. They say, I WAS HERE. I EXISTED. MAYBE I EVEN MATTERED. AT LEAST THESE THINGS MATTERED TO ME.

Adam's Blog

2008-04-15T16:53:00.005-05:00

You can begin reading Adam's own words here:
www.adamwolfond.blogspot.com
This blog is open for the time being, but will be made private (invitation only) very soon to protect him. If you are interested in reading his blog, please email me at estee@taaproject.com as soon as possible.

"Play With The Cards We're Dealt"

2008-04-13T12:03:00.004-05:00

To all those parents who complain about their autistic children (or how difficult life is), a few lessons from a dying man:

Note: I had previously titled this post "I'm dying and I'm having fun" which is a direct quote from the video. Alyric said I had frightened her so I realized I had better change the title pronto. Sorry folks!!

As We Are

2008-04-10T15:46:00.010-05:00

This baby born in India with two faces, says The Globe and Mail, "is doing well and being worshipped as the reincarnation of a Hindu Goddess."

"My daughter is fine, like any other child," said her father. "She is leading a normal life with no breathing difficulties," said Dr. Ali, who saw no need for surgery.

The ignorance in the way we express our familial difficulties in having autistic children is boring and tiresome. It is systemic -- we live in a culture that overspends, overworks and over-competes and these qualities together are supposed to comprise our identities. We complain on air how "difficult" autistic children are on parents and teachers instead of espousing them. Who cares about difficulty? I mean, our entire lives are meant to be difficult! But it need not be AS difficult if we can change the way we view things, which in turn effects the way we treat and accept people.

I am very disturbed at how trite our talk about autism and disability has become. I've said it before and I'll say it again, accepting autism does not mean preventing autism. It does not necessarily mean curing it, either. I am not going to speak for my son when he gets older -- I expect he will speak for himself. But I certainly do not wish to waste his precious time fighting for him to become something he is not when he can be successful as he is. Why does being "happy" with or without autism, not have to include sadness? How else would we feel one without the other?? How do not other "normal" (hate that word as you know, but I use it facetiously) children and families go through strife? And yet, look at little baby Lali above.

I suppose my happiness comes from my critique of our existence and how we look at things. I'm going through a phase of disgust with the media -- as we all know it's one big money making entertainment machine. I mean, do you really trust the newspapers you read? I hope we are all reading more than our national newspapers and CNN headlines!

As Elizabeth Gilbert said in Eat Pray Love, "people tend to think that happiness is a stroke of luck, something that will maybe descent upon you like fine weather if you're fortunate enough. But that's not how happiness works. Happiness is the consequence of personal effort. You fight for it, you strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining it, you must make a mighty effort to keep swimming upward into that happiness forever, to stay afloat on top of it. If you don't, you will leak away your innate contentment... the search for contentment is, therefore, not merely a self-preserving and self-benefiting act, but also a generous gift to the world."

I started reading Gilbert's book just before I went into surgery. Adam said I was reading "sad" books (his interpretation of my furrowed brow), so I said screw it, I'm going to read something light. When I read that paragraph of hers, it's melody sounded like a jazz line that could tie in with my Joy of Autism mantra above, at any point in the jam.

In a way, that's how I see disability studies and art. It's about being happy when we can touch our sadness, our selves and connect with what unites us. It's a way of digging deeper and hopefully shoving out those kitsch and trite notions we espouse on the air and in too many self help and autism "acceptance" books. What about digging a little deeper not into what it FEELS like just for a parent of an autistic child, but take a look into the lives and creations of ordinary people -- disabled people. For if we are all human, I am disabled too.

In honour of Petra Kuppers and her work and her website, I found this poem by Neil Marcus:

The Nude

by Neil Marcus

Nude we are
As sunbeams
As light
As moonlight
In darkness

There is a slow burn in the nude
A passion
An expression
That only a nude can tell
An opening into another dimension

soft flesh, hard muscle, gentle hair, speaks quantities
Elegant
Needs no explanation
Or justification
Just is
Can only be
What we cannot say with words

We are cripples
We are exquisite creations
Is there a shame to resolve ?
Freaks of nature or Precious Beings of another kind of second sight
Look again
Think twice

I wish to speak the unspeakable
The hidden
The secrets I have hidden
Insatiable DESIRE
Longing intimacy
Fierce intimacy
Ravenous touch
Total exposure

I wish to expose My Gender. My Sex. My Love. My Passion
These words are not just hollow affirmation
I dare speak clearly only in silence

They are my form
My disability
Naked to the world

Spasm to the world.

----

Don't we all want to be seen?
I know that Adam does. And he won't want to be seen through the veil of misery, but just as he is.

Something Cute (to ease the tension)

2008-04-07T18:13:00.003-05:00

Ah yes, Passover is coming. Our young ones are being exposed to their first field trips to the matzah factory.

Here is Adam's take on matzah that left me in stitches so bad, my newly cut abdominal muscles nearly split open again:

Me: I heard you made matzah at the factory today. How was it?

Adam: read it was pool.

Me: why was the matzah factory like the pool?

Adam: because it papa you to interesting eat it eat ugly

Me: is matzah ugly?

Adam: yes factory yes

Me: does matzah taste good or bad?

Adam: bad it tastes like poo like eat

----

Well, I can't blame him for being honest, no matter how far back his ancestral recipes for matzah brei may go. To Adam, you just can't dress up a plain-tasting cracker.

In Support of Kathleen Seidel And Her Work

2008-04-07T05:52:00.010-05:00

For her outstanding research, our dear friend Kathleen Seidel is being subpoenaed because of her exposure of the nonsensical vaccine controversy which you can also read at Respectful Insolence.

Subpoenaed · Apr 3, 08:45 AM

A week ago yesterday, I was served a subpoena commanding me to appear for deposition and document production in Rev. Lisa Sykes and Seth Sykes’ $20,000,000 personal injury lawsuit, Sykes v. Bayer (Case No. 3:07-CV-660, Eastern District of Virginia, Richmond Division). On Monday, March 31, I filed the following Motion to Quash pro se in the United States District Court for the District of New Hampshire. The motion has been assigned to Magistrate Judge James R. Muirhead for consideration; the issuing attorney, Mr. Clifford Shoemaker, has two weeks in which to respond.

I urge readers to read her motion to quash the subpoena here.

Kathleen is a fastidious researcher, and it is truly frightening how far certain parties are willing to go to prove that vaccines cause autism, which science has proven otherwise.

I also appreciate this video by Stop Think Autism: "I am also Kathleen" :

Which leads me to a point that Jenny McCarthy raised on Larry King when she held up her "vaccination chart." She held up a sign of what appeared to be a list of twenty vaccines our kids supposedly receive as young toddlers. But hey, Adam didn't receive all those vaccines. He may have received maybe four of them. And recently, he got his polio shot as he turns six. Similarly, as I wrote in my essay, The Mismeasure of Autism: The Basis of Autism Advocacy, I would like to remind readers of the hundreds of unproven "therapies" and holistic and medical potions administered to many autistic kids today in order to "detox" our apparently "enviornmentally toxic" kids. I wonder how "safe" they are?? If it weren't for Kathleen and the other reputable scientists working on behalf of protecting our children's health and their fundamental right to be autistic and treated with respect, I would not know where Adam would end up except in the hands of people who might literally torture him with their inhumane methods.

All I can say is the rot is rising and it sure stinks.

Behind the Lou Dobbs Smile

2008-04-06T10:29:00.006-05:00

Lou Dobbs made me cry.

Maybe I was more vulnerable this time. I had cancer surgery on World Autism Day. I do not have cancer, and if I did, it is most likely gone now I am not going to tell anything more about that until I finish my book, so you’ll have to wait. So excuse me for being a little emotional as I recuperate, watching re-runs from “World Autism Day,” on CNN. I was thinking about this as I as being prepped, thankful in a way that I would not be watching the TV that day -- sorry, almost, that I felt compelled to watch it afterwards, holding my wounds, the words of some of its reporters pretending to “do good” almost cutting me deeper.

"We have to do something about this ugly, ugly, ugly disease,” Lou Dobbs said emphatically, talking to Dr. Thomas Insel. That’s when my tears flowed. I imagined my Adam listening to his words flowing in between his denture-like smile, self-righteously saying that autism, my son’s way of being in the world, is ugly. Mr. Dobbs has obviously never met Adam or any other autistic adult. He cannot even fathom the joy we experience everyday when we are together (Adam and I, that is), and the utter sadness when people like Lou Dobbs goes on air to talk to millions of viewers of what he knows absolutely nothing about. Autism is so “terrible” everyone is saying, that I felt so terribly sad for all the parents out there fighting for services, for their children’s right to be valued and accepted, to be educated, and to contribute to the world. That’s our fight. It is what unites me with everyone who also loves their child and just wants them to have the best in life. It's what unites me with all the autistic adults who say the same things and are constantly ignored in favour of the parents! No, our fight is to change the education system to include all children of all kinds of learning abilities, because it is representative of the world we live in. Our fight is not to eliminate autism, because that then threatens the lives of so many people who are born with different disabilities (or who may age with them), and who cannot become a part of our world. So, I think Mr. Dobbs and CNN owe millions of us parents and autistic adults alike, an apology because,

Lou Dobbs has never seen Adam laugh so fantastically that it would make the entire world glow.

Lou Dobbs has never felt Adam’s arms wrapped around him so that everything in the world would make utter sense to him – even immigration policy.

Lou Dobbs has never received a kiss from Adam against his cheek that would make him stand up for Adam’s human right to be and live a full life as an autistic person, in an instant.

Lou Dobbs has never seen Adam laugh with his friends – something it took him a while to do, and something that one never ceases to appreciate when it happens – the true value of real friends.

Lou Dobbs has never seen Adam read Henry VIII at the age of a year old.

Lou Dobbs has never observed the interesting games that Adam is capable of creating on his own.

Lou Dobbs has never seen Adam begin to type sentences with such meaning that Lou would understand the depth of understanding of humanity that a five-year-old autistic boy can possess.

Lou Dobbs has never witnessed Adam pulling his mother and father's hands together when they are fighting.

Lou Dobbs has never seen Adam work so hard in a world that doesn't spend time to understand him, and who can also learn many things so easily in his own autistic way.

Lou Dobbs has never seen a child who wants to be so social, but who lives in a world with little patience. If Mr. Dobbs would make some time to spend with Adam, I know he would understand.

Lou Dobbs has never spoken with autistic adults who struggled against the stigma of “horror” and “ugliness” that the much of the world believes autism and disability is, and who today, can tell us all about it.

Lou Dobbs does not seem to understand the difference between challenge, struggle, sadness and joy and how we can never separate all of those human feelings. We can never make life more perfect than it already is. We can never separate the vastness of all these feelings for we would be a risk of being numb – smiling with whitened teeth without really knowing happiness at all. (Okay, I’m picking on your white teeth, Mr. Dobbs, but you have to take a little tit for tat because you hurt us so much, even if unknowingly).

No matter where you stand on spectrum of autism politics, I cannot imagine that not one parent or autistic person listening to Lou Dobbs would not want an apology. Adam has passed the television set a few times listening to these horrific reports. I’ve muted the volume. I never want him to hear anyone say that he’s ugly, or that his autism is. It is only Adam’s right to express what his autism means to him – not a non-autistic person’s. It is NOT OUR RIGHT TO JUDGE WHAT AUTISM IS OR MEANS TO AN AUTISTIC PERSON. We may relay what it means to us as parents, but that is only less than half the story. It’s time CNN put some autistic anchors on their shows about autism. It’s almost too late. CNN has made a lot of people perhaps so depressed. And it is not depressing to live with autism.

Our agenda, and the agenda of CNN (if they want to help) is diversity and inclusion. My child will give the world many gifts as many autistic adults do today – from software developers, to writers and artists --- these are things, folks, that are not trite – they are to be utterly valued as a part of who we are.

I don’t want whitened teeth and a fake smile and I'm fed up with pretty anchors on CNN. I want to see more disabled anchors -- truly representative of our world. I want to know happiness and I know it’s wrapped up in all of those complicated emotions that we all feel every day. From pain and suffering that makes the quietest joy like the faint sound of a flute playing in the dark of night. We look for those tiny lights that illuminate the meaning of life, that give us air.

I want Lou Dobbs to meet Adam. I even want to shake his hand and say thanks for the effort if he makes it at all. I want Mr. Dobbs to find out what the meaning of life is, through Adam the way I think I’ve found it with Adam and many others like him. I want CNN, if they want to “help,” to work towards a world of inclusion as the amount of disabled people, as our population survives longer and longer, will inevitably grow.

The Sixth Year (and moving on)

2008-03-31T11:57:00.004-05:00

I have been blogging about autism and my muse Adam, since 2005. He is my inspiration in life. How a child so small give gifts so large, well, I am always amazed. I guess it's why we become, and are overwhelmed, to be parents.

Adam is turning six this year. For me, it's rather significant in the autism-stream, because six was to mark that turning point that the doctors told us about -- if he didn't talk by six, he would always be autistic, prognosis wouldn't be good...etc., etc. Six was the cut-off year for the ABA that we never ended up using. Six was the age you were supposed to be cured of autism so you could enter school. So, for many parents, that number 6 is ominous. Too many parents work and struggle to beat the clock. We drive ourselves (and our kids) nuts, losing precious time during those toddler years, because, hey, our toddler's are not "normal," and we are irresponsible if we do not change the course.

Even the strong of heart feel the pressure sometimes, and if we are confident enough as parents to NOT care what the medical profession proclaims about autism, we still know very well the struggles of being accepted and obtaining the best education possible for our children.

Well, six has now arrived. We were told by ABA advocates "he may be a cute little picsher now, but just you wait... that hand-flapping won't be so cute when he gets older." I know, I've been hard on you ABA folks. It's just that I think you've been very hard on our kids. Who the heck cares about hand-flapping when we should all care about having our kids included in our communities? I think we all have a much more important agenda to be working on.

Six is coming and going, and for many of you, it has come and gone. I have shown a few birthdays in the following video. Just like many of you, we have struggled with ideas, perhaps struggled more so in ignoring the fear and trying to let it go for Adam's sake. We worked so that not every toddler year was wasted with worry. Six is arriving on April 11. I may not be able to write for a while due to some other reasons which I won't go into now, so I thought just in case I couldn't write this blog post, I would write it today.

Happy birthday to my dearest dearest Adam -- my son, my "boo-boo-bear," and my reason for being (peshaw Elizabeth Gilbert of Eat Pray Love -- my reason for being is my son AND I am educated and have traveled and lived abroad-- I read your book because my son said I was reading too many sad ones, and it did make me happy, by the way).

I think our little autistic people have so much to teach us. Adam is talking a little more now, he is typing and there is more to come. There is great life beyond the age of six and we've had some great years before it too.

A Year Of "Upper A's"

2008-03-20T08:51:00.024-05:00

Age 3.

Saturday, it's my birthday. All I want is:

Sunshine
A light warm summer breeze
A hammock
A willow tree
An inspiring book to ignite

A fresh outlook
Some needed dancing (it tickles my insides)
A few cooking lessons (for the sensuality of it)
More friendship and gatherings (to put life in perspective)

Maybe it's just winter has made me feel the doldrums of routine to such an excruciating extreme and a need to shed the weight of being (not to some "unbearable lightness," mind you, but some shedding is in order 'round here), for Adam said to me yesterday when I asked:

"What do you think mommy does all day?"

To which he replied, "read sad books."

Age 5. To think Adam is turning six next month!

Huh. This mom likes to be told by my child all my weaknesses. Isn't that what in large part, children are for? Maybe it's that serious furrow that's got him thinking that mommy might be sad. It's time to lighten up with the likes of spring.

The old perm days -- me at thirteen.

High School Graduation.

I hate to think that my forties has brought that seriousness that I used to see in other middle-aged people! Yet, it's a part of life -- we have children, we worry about many things, we are really busy, we are really tired. Still, a part of me never understands why some people want to be eighteen again.

Age 24

Being young was really difficult for me. Sure, I had good times, but my youth lacked a purpose that I acquired later in life.

I watch Adam grow up fast and I also learned this week that my cousin had her first grandchild -- her daughter, I recall, who seemed to be born just yesterday. That's more than twenty years gone by in just a snap!

So Happy Birthday to me, dag nammit! I hope this year will be, to use Adam's words, "upper A!" The children in our lives are taking over the world, and they remind us just how fast time goes by.

Notes On "Hell"

2008-03-19T08:26:00.014-05:00

Adam wrote, which we displayed in yesterday's video "think hell forgets boy," which really intrigued my dad, who sent me a myriad of hell-ish definitions and references to Thomas Mann, Plato and Socrates (index in above illustration).

What Adam knows or understands of "hell" or what he has learned of it, is very interesting and inspired my father to think about Adam's way of thinking in new ways.

We find Adam reading dictionaries a lot. He might put it on the edge of his bed, stick his head right in, lean in with his hands while using his arms to jump up and down. Others might say he is not reading at all because he has to move a lot when he does so -- but he can do this for hours. People ask me, "how did he know that word?" -- as he seems to know many sophisticated ones. Maybe this is one explanation.

I imagine he reads and learns many new words, but he is also a really good listener, even though people think that autistic children are not paying at all attention, as they seem to shift their gaze out to some kind of oblivion. I think about all the times when I used the word "hell" to describe how other autistic people feel when they are sent into special ed classes (quotes I gleaned from some of Paula Kluth's books) where often, their intelligence is "underestimated," (another word that Adam has now used). Other words, he comes up with all on his own, and it surprises me how he thinks about them. Better beware of what we say in front of our children!

Since posting yesterday's video, I also realized that "monsters" are probably Elmo, Cookie Monster and Zoe from Sesame Street, and it occurred to me today as we watched them before leaving for school as they continued to chatter away. He absolutely LOVES them, but they ARE talkative! I imagine Adam may have been comparing the monsters to the children he knows. So maybe monsters are endearing little creatures after all.

Omaasc was likely an attempt at spelling "home and school." It takes a while to condition one's eye to a child's attempt at spelling something. As this is new, it is taking me a while to think in these terms. And that's it, isn't it -- it is the ability to condition ourselves and recognize the communication that is happening every day!

And for those who don't believe that autistic children can learn or understand phonics -- Adam reads HBO as ch-bo. Boy does autism research ever have to catch up!! Absolutely everything out there is just about wrong.

Yesterday, I chanced upon a Socrates quote, "hell is other people," which was the inspiration for my father's research (a lover of philosophy). While it might be true that other people may seem like "hell" to many of us some days, I must say, the amount of people who have embraced Adam's words, and are sending him emails, well, I tend to think that we just want to be more bonded than separated. Maybe autism isn't the "hell" the media (and some people) make it out to be, but rather, the hell of a lot of heaven that we are, right now anyway, too busy to recognize.

In Adam's Words...

2008-03-17T13:35:00.004-05:00

Adam approved the following excerpts:

A Person's A Person...

2008-03-13T11:57:00.009-05:00

Since Adam has started typing, it's hard for me to write on this blog. What do you say to a little boy who says upon my return from a night away:

"Glad you return."

"Why are you glad mommy has returned," I ask, wondering what he will say.

"because hell forgets boy."

What do you say to that -- a boy who understands what the world is for him, or perhaps makes of him.

What do you say to a boy, not yet six, who refers to his peers as "loquacious" or that "talking is oppressive."?

What can I say to all my theories about Adam when they no longer are theories but are real with each typed letter?

No longer do I have to speculate what letters mean to him -- the fact that he loves the letter A which makes him feel "euphoric," or of his affable nature that recently revealed that "jokes are a staple for the atmosphere." Thank goodness his sense of humour is greater than mine!

What do we make of "autistic behaviour" when Adam, who has explained that when he gets ill, the reason for his constant movement is because it "makes me feel normal," -- a word many of you know that I find relative, but which is his version of normal, meaning, not ill.

What do you say when your son tells you, his baby teeth just falling out behind those still cherub cheeks just beginning to thin, "i feel numbers," but to sit and wait for more?

You see, I am waiting now, which has slowed me down a bit. Adam has begun to email his half-siblings, telling them what he did in his day. He is beginning to use the computer to communicate with others, and as for sharing his words, I must obtain his consent. So, while he can type now, I question where we all have to draw the line. What is the difference between advocating for our children and what we can talk about in public? I liken it to talking about our children with utmost respect for their right to privacy -- that not everything they say and do is for public consumption. It is why I take issue with parents who talk about how their children "hit" them in public to display autism as something terrible. (this is a special note to that certain Ontarian who ambushed me on CFRB during the Joy of Autism: Redefining Ability and Quality of Life event...how perfectly timed was that "hitting" for radio?)

Now, I've tried to be careful in the past, but certainly I am thinking of this more now -- if I ever crossed that line and what a shame it is to only be waiting for verbal or written consent. I think I always have tried to represent Adam and autism with pride. That has been the point of this blog.

I know also that we parents talk like we would at kaffee clatches, reaching out and yearning for support as we figure out how to raise and accept the special literacy -- behaviour, idiosyncratic communication and all -- of our autistic children. We have gathered together for mutual support, but I think that consent piece, that piece where no one is too little to be respected, needs to be thought about again and again and again.

For as Horton says (Adam's favorite book of late), "a person's a person no matter how small." What about, a person's also a person no matter how autistic or disabled??

You see, autism is not on display here -- if you want that, tune into Larry King Live where Jenny McCarthy, Jerry Kartzinel and Toni Braxton go.

No, our pride for who we are is simply worn on our sleeve.

Small people, all people should be proud and I may ask Adam write a review on the Horton Hears a Who movie which comes out this weekend.

Vaccines and Autism: Can the Causal Link Be Proven in Law?

2008-03-07T09:14:00.003-05:00

In my blog post yesterday, I talked about the difference between legal evidence and scientific evidence. It is disconcerting that a CNN poll revealed today that 71% of the public believes that vaccines cause autism, despite no scientific evidence to support the link. It seems that entertainment and sensationalism without fact still guide decisions and belief. I strongly urge Larry King to put on his program a number of autistic individuals from Autistic Self Advocacy Network, ANI, AutCom and The Autism Acceptance Project to balance the story and separate fact from fiction.

In keeping, I had my step-daughter, a first-year law student, prepare for you a synopsis of how something has to be proved in a private/civil law matter. I hope it helps further the discussion of the difference between scientific fact and legal "evidence," in the matter of vaccine injury:

Vaccines and Autism: Can the Causal Link be Proven in Law?
Serena Wolfond, L.L.B. Candidate 2010

In order to prove that the MMR vaccination causes autism it must be apparent: (a) that but for the administration of the vaccination, autism would not be present, and (b) that (a) is true on a balance of probabilities (i.e. that it is more likely true than not true).

Part (a) is known as the “But For” test for causation and is the standard test for proving causation of harm in private or civil liability cases (as distinguished from criminal cases). Applied to the question of vaccines causing autism, the But For test requires the party alleging the link between the two to indicate that but for receiving the MMR vaccination, autistic individuals would not be autistic.

Of course it is arguable that multiple contributing factors either together or independently lead to a certain effect. Accordingly, if it is impossible (for reasons such as the lack of conclusive scientific data) to prove causation using the But For test, a more relaxed test for causation, referred to as the “Material Contribution” test, may be employed. The Material Contribution test maintains that if more than one factor materially contributes to some outcome, then both causes will be found legally accountable. This test would require proof that the vaccine at least significantly magnifies the probability of an individual becoming autistic.

Part (b) requires that any claim that the vaccine causes autism under part (a) is subject to the burden of proof. The standard of proof in private/ civil law matters is placed upon the plaintiff (the party claiming connection). The standard of proof the plaintiff must meet is proof on a “balance of probabilities”. In practice, this means that the party alleging that the vaccine causes autism (according either to the But For or to the Material Contribution test) must demonstrate that this claim is more likely true than not true (literally, that the likelihood of it being true is at least 51%). This private/ civil law standard of proof differs from that in criminal law, where proof is required “beyond a reasonable doubt”. However, it remains severely inadequate to claim that the vaccine may cause autism, or that there is a mere correlation between the two.

To presume or infer that the vaccine is the cause of autism simply because there is a correlation between the time that the vaccine is administered and the onset of autistic behaviours is either to commit the legal error of shifting the evidentiary burden to the defendant (here, physicians or drug manufacturers) and calling upon them to prove that the vaccines do not cause autism. Or, to appeal to the doctrine of Res ipsa Loquitur, (a Latin phrase meaning “the thing speaks for itself”) which essentially carries the inference that some fact is true, though it must still be proven. Today this type of evidence is discarded by courts.

Problems with the Vaccine/Autism Hypothesis

2008-03-06T12:27:00.004-05:00

Everyone is aware of the vaccine/autism court ruling in Atlanta. Autism Vox gives a good summary of the recent events here.

Tonight, Adam and I will be on Global National News to say a few words about the fallacy of normalcy and the vaccine hype -- that belief that one day one's child was developing just fine until blamo -- a vaccine was given and their child was "lost" to autism.

Ah hem. We are autistic in this family and proud of it. We are not "wrong" or "abnormal" and just because some organizaton (like TACA, Cure Autism Now, DAN! and the like) says you are, doesn't make it so. Skills dissonance and inconsistency is very common in autism, and it can happen at any age.

Camille Clark made a wonderful comment on Kristina Chew's blog and I'm inclined to agree:

When Hannah was 6 months old, as the family came to grips with the likelihood that she was autistic, …”

But my question is, how much did their conversion to DAN!-ism in the months following Hannah’s apparent regression contaminate their memories of what she was like before and after the vaccines. Somewhere in the year after the set of vaccines in question, daddy began to consider becoming a DAN! doctor himself and both parents had attended DAN! conventions and they started exposing the girl to the typical quack and/or controversial treatments of that time, knowing full well, apparently that she had a mitochondrial disorder caused by a “point mutation” on a gene controlling mitochondrial function.

Then there are conflicting accounts about the timing and cause of Hannah’s diarrhea. I wonder if they tried to reconstruct a more serious sounding vaccine-implicating scenario after having contacted Shoemaker and after having been in touch with other DAN! parents for a few months. Considering that daddy was thinking about being a DAN! doctor they might have been considered celebs at DAN! conferences, etc way back in 2001.

Hannah might be as autistic as any other child, and maybe vaccines changed her by causing a fever, but her mother admits that it’s possible the same thing would have happened to Hannah without any vaccine, with exposure to virus.

And one has to wonder if mom is talking about taking the money to pay for quack DAN! therapies. If so that would be sad.

I would also be interested if we could discuss on these blogs, the difference between legal evidence -- the burden of proof, balance of probability -- versus scientific evidence. It seems that it in this court case at least, the lack of scientific evidence didn't matter.

It's about finding something to blame when you want to find something wrong. What about ditching that idea for a while and just keep growing, living and learning -- with autism?

Phone Calls

2008-03-06T12:03:00.002-05:00

Hi everyone. I apologize if people had been having difficulty calling in to The Autism Acceptance Project's office. Something was up with our voice mail that I was not aware of so I am just getting voice mails today -- some which are a few weeks old! The problem has now been rectified.

The Autism Acceptance Project is a volunteer-run organization. Please be patient and someone will get back to you as soon as possible. In the event that your voice mail did not make it through this quirk, please call us back.

Autism Speaks (doesn't yet talk to me)

2008-02-29T08:54:00.018-05:00

Just to let people know, I recently discovered that The Autism Acceptance Project website and my blog are resource links on Autism Speaks' website. (If you have trouble go to www.autismspeaks.org, then to Community, then resources and then to blogs).

I want people to know that Autism Speaks never contacted me for such permission to link from their site to mine and in no way am I currently affiliated with them. To link to my sites is open to anyone and I will not deny access, but I do not wish the public to think that there is tacit cooperation between us at this time as they have made no effort to contact me personally for a discussion on why I, along with many others, take offense to the way they politic and market autism.

I am open to having a discussion with Autism Speaks on their politics and the problems with it, with other autistic folks. I believe everyone has a lot to learn from each other, but that autistic people have to be at the forefront of this dialogue, and I stand beside them and every effort to make this happen.

I am happy that people from Autism Speaks' site will be traveling here, but in no way am I endorsing their mixed message, as recently seen on Larry King Live as an example of tying in acceptance with a cure for autism. Many autistic individuals and myself have real problems in applauding people "who become normal," or "who overcome their disability," or "independence" as the Holy Grail. There is a difference between that expectation and celebrating milestones. There is also a difference between the burden of low expectation and the expectation that someone is to look and become as normal as possible.

The difference is that we accept autism as a valuable way of being and contributing to society. We accept that autistic people learn at their own pace and in their own way. We do not hail indepdendence, although it doesn't stop us from also celebrating those milestones that may take a person there. In other words, we celebrate everyone and acknowledge the real challenges not as a form of pity, but in order to enable and assist others to reach their fullest potential. I think that those who directly experience such challenges are far better able to express the dynamics better than I, but as a mother who strives to understand the challenges my son faces, and who is beginning to express those frustrations with others and his limitations in his own typing, this is how I've, so far, made sense of it all.

I invite Autism Speaks and Larry King to invite me on their show to discuss the issues and implications of why their message of tying "hope, cure and recovery" are so problematic and dangerous, and how we can work as allies to stand beside the autistic adults who are really paving the way for our autistic children.

On a better note, here is David Wolman's Wired article (The Truth About Autism -- link on PDF above video) for which he interviewed me for an hour, but TAAProject received no mention.

Adam Speaks

2008-02-11T11:51:00.000-05:00

I have no words yet for this...they are trivial. So I made a video instead:

PLEASE NOTE: This video was made with the knowledge of Adam, who has been very happy, by the way, at everyone's responses and congratulations. From hereonin, he will address HIS readers, directly.

Petition -- Hospital Ignores Family Wishes

2008-02-08T16:23:00.000-05:00

Many of you subscribe to The Autism Acceptance Project's monthly newsletter. In my blog AND in our last issue, Barb Farlow, a mother with a child with Trisomy 13, wrote a piece on how a Toronto hospital issued a DNR without her consent. She has been an active advocate ever since for the rights of disabled individuals everywhere.

Barb directed me to this petition, where Grace Hospital in Winnipeg ignored a family's wishes and issued a DNR without their consent.

Why is this important to discuss and what relevance does it have for autistic people? It has to do with human value and worth and how others ascribe or take away that value. Do hospitals truly understand the great lives we lead with disability in the family? What happens when hospitals get to decide human worth when our non verbal children become ill? Will they think that our kids are "tragedies" and make consequent decisions based on that false assumption? Please consider what it means to sign that petition for our children.

Reasons to Smile

2008-02-06T10:34:00.000-05:00

As I wrote already, Adam lost his first tooth last week. I had to travel for a couple of days, and the reports from school were that he went to all his friends to continue boasting how he lost a tooth.

"Tooth fell out," as he pointed with his finger. "Tooth fell out!"

Like all kids whose teeth fall out, he is really fascinated by this so much so, he is interacting and telling his peers, I think, more than ever. Yet, Adam can quietly work alongside them, even WITH them -- currently he is learning the map of Canada and already interested in the provinces. He knows were Nunavut is. I do not (except that is far North somewhere). As Adam's classmatees come to know him, they accept that he doesn't talk much, and they jest me that I come too early and peer at him. Adam, who has only been at this school for a year now, likes to push me away from recess and doesn't like me to come and get him before his classmates also have to leave. For us, that is really something. Peshaw with all those who believe that autistic people (even the non verbal ones who appear as if they are not paying attention) do not want to be social!!

Adam has also started his first REAL piano lessons. We loved music therapy, but I thought now is the time (since he is interested) to learn to really play.

Here he is with Grandma (grandparents are wonderful and patient teachers) as he has to learn to count and move and study his fingers. He already knows how to count and move his fingers, but this is a piano exercise. I'd say he's already got it down pat.

So, there are many reasons for us to smile as we continue to grow and learn.

What A Difference A Year Makes

2008-01-31T09:32:00.001-05:00

Adam in summer 2007

Adam admiring a boat December 2007

Adam swimming with life jacket early summer 2007

Adam swimming without life jacket end of 2007.

What have you learned in a year? What has happened in a year?

It's what I come to think of when I look at recent photos of Adam and realize that nearly 6 years have gone by since his birth, a little more than four since he was diagnosed with autism.

I have had a lot to learn and a lot to say since then. It's exciting to feel as at home and at peace with life as we know it, and I often think about those early days (maybe some of you are experiencing them right now), when we possessed a lot of fear and our days were obsessed with trying to make Adam less autistic.

Long gone are those days useless days of fear as he succeeds as an autistic person. I can't say I'm a proud autistic person, but I'm certainly the proud mom of one.

Anyone want to write about what a difference a year has made for you?

Doctors Speak Out Against ABC Autism Program (but ABC refuses to listen)

2008-01-30T18:29:00.000-05:00

Tomorrow night, this program will air on ABC. Today, our Toronto news media have spoken out also against the airing of the show, stating that "ABC will have the deaths of thousands of children on their hands." Entertainment or not, ABC should be held responsible for the perpetuation of fear and inaccurate information that vaccines cause autism, which for a long time now has been disproven by science.

But many of us know, that empirical evidence means nothing to marketeers who have so much to financially gain from "alternative medicine."

Of course, as an individual who speaks publically about how the media does damage to autistic people, perhaps we can all send an email to ABC stating whether under the guise of "entertainment" or not, the proliferation of inaccurate information is damaging to millions of individuals. Email ABC here to post a comment on their message board.

"I wish to propose for the reader’s favourable consideration a doctrine which may, I fear, appear wildly paradoxical and subversive. The doctrine in question is this: that it is undesirable to believe a proposition when there is no ground whatever for supposing it true.”

-- Bertrand Russell, 1935, On The Value of Skepticism

Another Milestone

2008-01-27T20:52:00.000-05:00

Adam lost his first tooth today while eating his chocolate ice-cream bar for dessert. Were it not for his wisdom in passing it to me -- this hard thing the size of a kernel of corn that I thought was a foreign object in the ice-cream, I would have never been able to store it in the silver-case-for-first-teeth someone gave me when Adam was born. I keep every first -- first pair of walking shoes, first outfit, first lock of cut hair and now, first tooth. Of course, I was excited as Adam lolled his tongue around the empty spot, then his finger -- the feeling so foreign. I showed him his lost tooth in the mirror and he smiled. We wrote a story about it and that the tooth fairy that leaves money under the pillow to buy candy (so he can lose more teeth), in the morning. Then, I pulled out the Brother label maker and we had a little bedtime conversation I wish to share. While Adam's verbal ability increases little by little, he has a difficult time with conversation and full sentences.

"Adam," I proceeded to ask, "what happened today?"

He typed, "I lost my tooh."

"How does mommy feel about that?" I asked.

"Mommy is proud," he wrote -- all on his own.

He then typed out some other "feelings" he has been learning on the computer such as sad, angry, ecstatic. I realized these were the feelings he is learning from this particular program to which I said, "that's right, we were talking about mommy's feelings and those are feelings too."

Adam had spent the day playing at his friend's house -- with Daniel and his brother Brandon. He had spent nearly five hours there and I had left him there to play. He did not wish to come home (nor did I blame him after four days being cooped up at home with the flu). So, of course I had to ask,

"How do you feel about Daniel?" to which he replied, "I like duno." I guess names are a little more difficult to spell.

I've been watching Adam play on his computer, read books since he has been nine months old, copy words from reading to paper (even though his hand-writing is still difficult to decipher). And all it has taken is a little concerted effort, some directed questions, a Brother label maker, and a child's electronic dictionary. Okay, and a literacy program, and a good inclusive school, and some great people who work with us every day.

For this mom anyway, having conversations no matter what the form, is just as exciting as the lost first tooth.

By Design

2008-01-23T15:41:00.001-05:00

Tomorrow, Henry and I are hosting a conversation dinner on the buildings we admire with the purposes of how we wish to develop our city. It is something I used to be passionate about as an art curator with an avid interest in public spaces. Living in Canada was always gray in the winter, with mediocre architecture. North American design has often been about about economy, efficiency and utility, while beauty has been considered a frill. Only our houses of art and music that have been sponsored by wealthy families have been the most inspired -- like old cathedrals. Perhaps our universities have brushed us lightly with a molding of history here, an arched doorway there. Canada does not have a lot of history.

So I had to think about my favorite building and what I came up with was a myriad of public spaces -- many of them in Europe that I encountered while living such as the Freiburg market where I used to buy my seven-dollar broccoli on a student budget. These markets are always near the city halls and cathedrals. Cathedrals were places where the public slept, commiserated, socialized and exchanged goods. When I was alone in Europe, the Freiburg cathedral was a quiet place to think in the evening. During the day, the market hummed with voices and the smell of coffee invited breaks at umbrella-tables outlining the cobblestone square. It was a place where people gathered everyday, and where the brautwurst-stand provided a student with a cheap meal. It was this culmination of everything -- grandiosity, history, beauty, commerce and community that continues to make it a successful public design.

Whenever I am out these days, I always look for accessibility that reflects our values and our community. I look for curb-cuts, easy access for people in wheelchairs, or for moms with strollers. I always look for nature, for beauty and that which soothes us. I pay attention to the piercing noise at malls -- as I feel assaulted with beaping vehicles, music blaring from within and without stores, and the scents of many things -- all indoors. I am painfully aware of the lack of access to malls on foot, to many of our food stores. Sometimes, it's just too hazardous to walk, and in Toronto, the pedestrian no longer has the right of way, even though it is still a law.

We have built villages for cars -- not for people. When I see people think about design, I really appreciate it. From well-planned classrooms to an outdoor market, I feel a sense of relief. When I see a well-designed (barrier free) environment that soothes, rather than built with steel-like utility, I feel that the person for whom it was built was respected.

I wonder if the lack of access and thought about aesthetics not only reflects our thinking about the disabled, but also about humanity, as it doesn't seem that we truly respect ourselves and our need for each other. We certainly are not building for it.

"How is a village a village? By including young and old, white and black [disabled and non-disabled], rich and poor." -- Anonymous (brackets mine).

The Burden of Proof

2008-01-15T10:18:00.000-05:00

Adam and I have been busy. He's typing out more sentences and we're talking a lot about how he feels about things (as opposed to the barrage of questions about what he knows which is a very ABA way of questioning children). Even though I know Adam has a lot to say, there is always more than what I think I know, which is why parenting is humbling experience. Adam likes Van Gogh's "spots" (referring to pointillism) he said to me yesterday. Then, in writing on a keyboard later he said, "I like the ocein," when I asked him what he liked about Florida. Even though a parent can intuitively KNOW one's non verbal or quasi verbal child is intelligent, I think we can't really know what lies within anyone until it is expressed. I am not saying do not assume a person is intelligent or that they are not communicating without words - we know that communication is more than words. It's just that words and symbols are very powerful.

These moments of clarity, punctuate my belief that to really know one's child is an act of guidance and then ultimately in letting-go. We just do not know, therefore we must be very aware of our own limits in thinking about things. It is why we have the phrase "make the least dangerous assumption." It is why I believe that our children are so incredibly awesome. It is, if I were to talk esoterically about knowledge, the difference between creating changeable frameworks that we apply to all kinds of things for our own understanding, versus realizing that nature and humanity cannot be framed. Every time we try, the picture shifts. So imagine the most amazing things!

So now I am going to explain how I felt when I took Adam to a popular horse-back riding program here in Toronto for kids with special needs (not the subsidized one so I'll keep you guessing). Adam, who is averse right now to putting on things around his ears, had a riding helmet thrown on his head as soon as we arrived in a big barn on a cold day. A big strange guy came up (we're talking on his first day), and threw him onto a white horse, without even introducing himself. Whoa! I expected them to introduce Adam to the horse, let me come along for the walk, get used to the helmet. I did not even expect that Adam would be on the horse the first day!!

"We know what we're doing, " the big-guy said to me, trying to reassure me. "Don't worry," his partner joined him from the side as Adam was swiped away from me high on the horse's back. "We work with autistic kids every day." That was a red flag. I felt my innards tense. Anyone who says that "they know what they're doing"...be forewarned. It is the reason I am writing this post. None of us knows a child that well.

Adam cried and cried and cried. "I want to go...I don't want to!" he bellowed as they said "touch your legs." And he did -- in the midst of crying, his little round face all red, his eyes tired of not being listened to, yet responding to them obediently in hopes that they would finally listen to him.

"Say, 'move on Snowman,'" they asked. He would have said anything to get them to let him off the horse. His little voice was becoming raw, and still so small and fragile. "Move on Snowman," he said between gasps of mucous-filled air.

Now I'm getting pissed (with myself and the situation), while hoping that maybe he might calm down and begin to enjoy himself. I am putting on a fake smile, waving at him, trying to reassure him that I'm right there at the end of the long barn. I am feeling pressured from our old ABA days that I'll be judged for wanting Adam off the horse, and am distressed at my uncertainty at this point of what to do. I hate those stares I get from instructors that I am just the mom and they are the "experts." There are some of you out there that I'm sure will know what I mean! How terribly arrogant those stares can become.

"Is your child high or low functioning?" asks one dad as he approaches me while I am absorbed with Adam and his safety. I feel like I'm on the wrong planet, in the wrong place. Is it worth it to go on a diatribe how there's really no such thing as I listen to his feet squishing towards me in the mud. Do I need to justify Adam's intelligence despite the fact he is autistic? I move away and end up responding with little interest, "I don't think of him that way," and leave it at that. The dad looks confused as I leave him in the muck infused with the scent of horse.

I mumble in hopes that the parents who tried to also reassure me: "Yes, we remember when our kids cried in ABA," would hear me as I said aloud to myself, "They don't respect him. He is saying he wants to go." Yes, I am doing it on purpose, but also because I am feeling under attack. I move away and focus on my Adam some more, sucking in the air between my teeth, pondering my next move, feeling their eyes on me, then back to their own children. I watch the other kids as they obediently follow directions. Yet, I don't want Adam to just follow directions. I am proud, actually, that he remains upset and tells them that "he doesn't want to." I am not happy he is upset, but at least it is human. His will has not yet been broken.

"Can I get him off, please?" I ask the two 'instructors,' not realizing that this was an ABA horseback riding program. At least it wasn't stated on their website. They look at me as if my intervention will blow their break-the-kid's-will-and- they-will-begin-to-enjoy-it-approach to obedience. I pull Adam off the horse and also take the helmet off that has been visibly bothering him through the entire ride. His pants were bothering him and the instructors didn't help him out or even acknowledge his discomfort. "Walk on Snowman," and "touch your legs," seemed top of their agenda. Adam's responses pleased the instructors. After all, isn't much of the purpose of intervention to please the adults who do it? (Pause for self-reflection).

"Calm down Adam." I crouch to his level and pat stroke his head, being very quiet. He stops crying immediately. "Let's look at Snowman together." I pat Snowman, I wear the helmet. Adam is watching me. "Do you think you can try again?" He pulls away, but I ask him to give it another try. We are not the giving-up kind of folk. He tires of crying as he whimpers, still very unhappy. We finish quickly after that.

"Many of our kids cry like that and eventually they get so tired of crying they begin to enjoy it," says the big-guy who has decided to follow us to the car. Adam's hands feel like ice and I am anxious to get him warm again. I am trying to give the "go away," body language. "Uh huh," I say un-enthused. I want to attend to Adam whose eyes are still red and watery.

It just may be that the kids learn to enjoy it -- the big-guy might be right. In fact, I don't doubt it. Yet, if Adam had been given time and patience, he may have gotten on that horse willingly as I have put him on ponies many times before. Adam loves so many things and he is usually not averse to new experiences.

But when I was EXACTLY Adam's age, my dad also put me on a great big horse and I freaked out. BECAUSE I COULD SPEAK AND WASN'T LABELED AUTISTIC, he took me right off and respected my desire to have nothing to do with horses for a while. I may have gotten used to it if someone forced me. But forcing wasn't the point. Forcing Adam has never worked for him (or me for that matter). Patient introduction and persuasion helps us get through the fear-factor. With myself as a child, I eventually wanted to do it on my own. I have a healthy respect for horses and don't ride them often.

You see, I wanted Adam also to enjoy himself. We get sick and tired of therapy. Everything for disabled and autistic kids is "therapy." You can't find ONE program -- be it a music teacher or anything unless it is labeled as "therapy" therefore "making the child better" [than they are]. We are not looking for therapy anymore and I hope there are clinicians and professionals reading this in order to be hired as teachers, not therapists -- people who can open up new worlds and help with filling in gaps where we need extra help, and hopefully who have fun engaging with Adam. We are looking for equal opportunity to learn and be a part of many programs. We are looking for a chance to learn new things. Adam wants to be with other kids. We are looking for people with patience and maybe some understanding of the nature of autism and an understanding of how Adam might be good at learning these new things.

Because he's autistic, and I have to assume this as I did not see evidence to the contrary, those instructors ignored his requests, they didn't give him a break until I intervened, nor did they understand Adam's NEED, be it because of autism or not, to be gently introduced to the idea of riding horses.

Finally, I am upset that ANY therapist has such control over us as parents -- that they make us feel unsure about our parenting. It is particularly so right now in our autism community. Those seeds of doubt must exist in every parent. Be it from teachers and other people in positions of authority telling us parents what our kids should be doing and how they should be doing it -- parents need to have greater confidence in the way they want to parent no matter what kind of child they have. This might be even more important for parents with special needs children to assert these needs and desires.

In autism, and I introduce this sentence as such because that's what I am on the journey with, there is a difference between teaching skills and letting a child know their value and enabling expression. One cannot exist in isolation of the other, yet too often the focus is always on teaching skills. So here I was, standing there, letting my gut wrench primarily because I didn't realize that the "we know what we're doing" people were practicing ABA. And if they didn't do it knowingly, they did it anyway. They assumed that Adam should comply with their requests, to prove and show what he knows. Some might call compliance a form of skill-teaching or a basis from which to learn new skills. This program wasn't about enjoyment. It was about obedience. Adam had to prove himself in an environment that expected little of him, with people who cared nothing of him, and who thought that they knew everything there was to know [probably] about autistic children. That is the world that we are creating for autistic people, folks -- a place where all of Adam's energy must be placed on proving his value and his intelligence, not enabling and valuing his expression, or letting him move on in life without the burden of proof.

Needless to say, we won't be back there. Who knows if they have truly created a horse-aversion for the rest of Adam's life. Yet, we will try again another time, if Adam wants. Some experiences we try end up being terrific. We try regular programs, "special" programs -- some are good and others not. Yet, I have to say, I am grateful that Adam does not go to an autism school, at least here in Toronto. I would fear that he would always be so incredibly underestimated.

Resolutions and "Realities"

2008-01-09T09:18:00.000-05:00

"The systematic denial on science's part of personality as a condition of events, this rigorous belief that in its own essential and innermost nature our world is a strictly impersonal world, may, conceivably, as the whirlgig of time goes round, prove to be the very defect that our descendants will be most surprised at in our own boasted science, the omission that to their eyes will most tend to make it look perspectiveless and short." -- William James

The wind is blowing in Toronto today. Up to 100 kilometers per hour. Just the right kind of wind for me -- the strong wind that can clear the cobwebs and symbolize new beginnings.

And so I wish you all a Happy New Year. I started mine with a health scare (my brother-in-law welcomed me to the perils of "middle-age")which is why I haven't written that much over the past month. Turns out I'm going to be okay. In the meantime, I spent the holidays so happy with my Adam. The way his hair swept in the breeze, the way he smiles and is so affectionate with us all. At the sudden possibility of my becoming very ill, I wasn't scared about the "future of Adam" anymore. I know, it sounds strange. All our time as parents and we fret about who is going to "take care" of our children when we're gone.

I had to spend the last four weeks wondering and preparing for just that. While I was certainly, upset, that people compare autism to cancer in my situation and the circumstances of my mother who has gone through cancer twice now, I was scarred at only having to possibly MISS Adam's future and all of his remarkable and ordinary moments. And then, considering that there are things simply out of our control, I thought that the one most important obligation we have as parents, is to have faith and let go of our children -- no matter what their "needs." I don't mean to give them to institutions -- heaven's no. I mean to believe in them and let them grow without strangling them with our selfish worry.

I had to think of the possibility that I would become very ill over the next few months. I had to think of all the people I have faith in, and with who Adam has forged his own relationships with, and rely on those people and Adam to continue. I had to drum up the trust I have in Adam, even with his age and vulnerability -- that he would have to "speak" for himself in whatever manner he would.

While I waited for my tests, I spent time enjoying Adam, reading books with him, still teaching and guiding as parents do, but I was very relaxed with him. We had lots of fun and he began to speak more. He wants to play with other children and I enjoyed watching him make his own kind of initiations. He played a terrific Simon Says. We snuggled on the Florida beach where my in-laws live, watched some thundering waves, and we were very content. I'm not saying that it was just my being relaxed that Adam "progressed" (in fact I'm tiring of that word because every human being evolves and the brain is malleable and fluid and everything always changes). I'm saying that we were relaxed and as a result, I probably could just SEE and appreciate more in and of him.

As part of my commitment to my son, I will finish my book this year and spend more time playing with him. Playing music, ball, Simon Says, and other marvelous games. Not to just "teach" him, but to be with him. I truly enjoy him. I think learning comes from being with and doing things together. When we spend too much time hypothesizing what autism is and why autistic people do what they do, we tend to miss everything. We imprison autistic people to our low expectations, often based in false or ever-evolving theories, and we so limit ourselves to the many possibilities and gifts that people -- all "kinds" of people -- bring us everyday.

You won't see me engage in every autism news item this year. You won't see me publishing the derogatory comments that I sometimes receive from others on this blog, and you won't see me respond to questions on how to "treat" your autistic child, or acknowledge how you think I should raise my son. You see, I expect Adam may read this one day. I have personal difficulties in making any suggestions as to how someone else's child should be raised because the same choices in raising any other child also belongs to an autistic or any other disabled child. No government-mandated and segregated "autism program" or "surveillance list" will limit us or our options, and Canadians might wish to rethink the backwards direction such "programs" may be taking us. If anything, I will celebrate our children with you, share in the challenges created by obstacles unnecessarily placed on front of our kids and the adults today who are paving their way.

This blog speaks for itself and for the way our family lives and the choices we've made. The last thing we all need is another "expert" in the overwhelmingly vast sea of false ones. God knows it is those "experts" that compelled me to write a blog and a book in the first place. I will work with others who wish to improve the quality of service, education and inclusion for their children -- which, in my opinion, should be based on the inherent and natural being of the autistic person. That, dear friends, is called FREEDOM. Freedom to be, to roam, to have the education one deserves. I believe in working steadily and diligently in bettering opportunities and changing attitudes, but not worrying in order to "make things better," or "to get more services."

We will hear different interpretations of life with disabled children and they will collide with the interpretations of many other autistic and disabled individuals. One person may ardently claim for "scientifcally proven treatment" based on their "reality." Another may claim their right to freedom -- the freedom to be disabled or or the freedom to have options for their children and for them to be included in schools and society. Wallace Stevens said "reality is the product of the most august imagination." We assume there is only one reality, one code, one cause, one "scientifically proven treatment." We have believed that one day, science will solve everything, says Jonah Lehrer (his last names ironically means "teacher" in German) in his book Proust Was a Neuroscientist. Yet, life as in art, is what we make of it. It is how we paint, weave and write it. And from such constructions, science attempts to deconstruct life -- from how we experience it. Lerher points out that artists like Walt Whitman and George Eliot "witnessed the birth of modern science...[they] contemplated Darwin, Proust [and] Woolf admired Einstein -- they never stopped believing in the necessity of art. As scientists were beginning to separate thoughts into their anatomical parts, these artists wanted to understand consciousness from the inside. Our truth, they said, must begin with us, with what reality feels like."

The challenge of the year as I see it, begins not only with scientific deconstruction, but with listening to experience, particularly the experiences of autistic people. Their art, their writing, their political activism are not pretty little pieces or trite ramblings we can consume on the margins and forget about while the scientists do the "big" work and enjoy our research dollars. Both art and human experience must inform science, not the other way around. It is perhaps this trend to view medicine and science as the explanation for all things human, the faith in "scientifically proven" and the marketing and the money that gets poured into such promises, that disturbs me most of all. For there is no code that is written that can truly illustrate or explain every human soul.

"Science needs art to frame the mystery, but art needs science so that not everything is a mystery. Neither truth alone is our solution, for our reality exists in plural." (Lehrer)

Hey Baby, What's Your DNA?

2007-12-28T07:58:00.000-05:00

If you've been wondering why I haven't written or responded to comments, we are on vacation. I have not had frequent access to a computer. It is wonderful to step back sometimes and just watch Adam and enjoy him. We play in the sand, we do our thing, regardless of the relentless ramblings of a media that won't let us forget that there is something nearly surreptitious going on without our realizing it, like an unrelenting wave that, when it recedes, it only undulates back again.

Latimer, Judge Rotenberg Center (the article in the New York Times that seems to justify, again, it's existence because kids are "too tough" to handle), and today's rather interesting but also perturbing article in the NYT (sorry, I can't link to articles on this computer so search for December 28th's paper), on variations of DNA. All of it would make you think there there are serious epidemics going on rather than science beginning to find the distinctions between us. Will it really help us to assist our children? Will the barrage of labels really serve to understand various individuals with disabilities?

I haven't uttered "autism" once here, because it won't make any difference. Adam plays, he swims, he tried to kiss his first girl (other than his mother and grandmothers), and more. No one is passing judgement on him here, even if he can't speak that much (or is afraid to because he may also be so aware that it is more difficult for him). I don't feel the need to justify him or his way of moving and being in the world. As my mother-in-law can attest, he is "magnificent."

My friend with two disabled children is here too. She said to me last night, "it makes me so sad to think that there won't be any more people with Down Syndrome in twenty years." I think she has summed it up for many of us parents with genetically different kids. We don't see the problem, here. (Well, I can think of a couple of bloggers who think there are major problems, and as they are parents themselves, I cannot relate to them whatsoever). It is only the medical profession and the media which profits from such a gaze -- the medical gaze, if you will.

If you decide to read today's article in the New York Times, you might be thinking something like me: I can imagine a day when our kids are sitting in a bar, having grown up in a generation of label fanatics, thinking of themselves as quirky, maybe even deficient and living to tell about it. Hopefully they will have rationalized it and come to define themselves on their own -- without their labels. Adam may ask to buy a girl a drink and say, "Hey baby, what's your DNA."

But with the undulating wave of gloom that persists -- be it the Planet in Peril, the wave of health epidemics for which we must DO something, I can only hope for such wonderful sarcasm and such a strong sense of self.

Ransom Notes Campaign is over (but negative media and representations are relentless as I accidentally catch Dr. Phil)

2007-12-19T17:32:00.000-05:00

Our petition worked. Thanks to everyone who came aboard to sign the petition against this campaign. The Ransom Notes Campaign is over. Here is their public statement.

However, as I write this, I am watching another "horror" show about autism on Dr. Phil, which demonizes an autistic boy. One mom talks about how the "divorce rate is so high" with autistic children (which is unproven), and how she wishes her child would die before her so that she wouldn't have to worry about what might happen to him when he dies. Sounds eerily familiar to Allison Tepper Singer's wish to drive over the George Washington Bridge with her autistic child, and which she said with her autistic child in the room.

Dr. Sears is on talking about recovery. The video of the autistic kid who has "fully recovered" scoring the touchdown is on. That mum is proud. Again, best if your kid can be a champ, as Dr. Phil insinuates -- better if all autistic kids can become normal. I'm giving you a play-by-play here. Now parents talking about how autistic kids can be abused by teachers -- yes that unfortunately can happen by people who think autism is just a set of behaviours or who are impatient. I wish we could focus on understanding autism in a show, rather than the horror. Where are the autistic adults?? Why weren't they interviewed on Dr. Phil??

I just want to remind people how the Autism Speaks video said many of these things -- the divorce rate stuff, the murder, how hard it is. I want to repeat how when one thing is said, it is repeated in the media (especially by sensationalists like Dr. Phil). It gets repeated by parents. It gets obsessed about. People believe that autism is just a nightmare. It gets repeated so much that people cannot fathom not believing it. So, it must be true.

So much so, need we remind you of the abuses and copycat murders that transpired after Autism Everyday was aired. As a friend mentioned recently, we never hear about Katie McCaron through Autism Speaks. They just don't acknowledge her.

I propose that we all send a letter, once again to Dr. Phil, to thank him for "trying to help," but to at least provide a more balanced view of autism and help us also celebrate the achievements and lives of autistic people, while we also address our challenges. Next time he does a show, it should be full of autistic adults and those of us who are also happy, and coping, with our autistic children.

Autism isn't holding us for ransom here

2007-12-17T13:13:00.001-05:00

Thanks, Dinah Murray, for illustrating the hideous marketing from NYU Child Study Center in the video below.

Thank goodness I've got my son, and not them and not whatever they claim to have "kidnapped" him, cause it sure doesn't look like the Autism we know. You see, autism around here looks normal to us. It looks friendly, it still learns and grows, and it makes our family happy when it smiles. It's learning to type, it's learning to swim, it goes to school with other children and it seems quite happy there. It likes to travel and tends to speak more when relaxed and seeing new things. It likes to jump and likes to run and is just learning to ride a two-wheel bike. It likes to play musical instruments and likes to coordinate its beat with its music teacher. It reads signs well and is learning about dangerous things. It sure doesn't look like it's holding anyone for ransom here. Our son knows he's different, even if he doesn't know who your Autism is, and it's only what you make of it that he will be fully aware of. You can choose. You can tell my son that Autism is holding him for ransom or you can tell him that he's free to choose what he wants and he's alive, and beautiful and we are all here to help him succeed.

Please sign the petition Dinah makes reference to here.

Please read yesterday's post Pity: It's 100% Curable just previous to this post to contrast videos and campaigns.

Pity -- It's 100% Curable

2007-12-16T08:35:00.000-05:00

Talking about fear-marketing at various conferences throughout 2007 and it seems that the work is never over (I will be speaking at the University of San Diego in January for those who wish to attend). As the year closes, I'd like to focus in 2008 on not just what is so destructive for individuals by marketing fear and how that leads to MORE stigma, but to focus on what disabled people do so well and what they DO contribute to society.

This will be my 2008 theme -- making such comparisons and critical investigations. My current studies and papers include a look into disabled art and performance and how it has criticized the "normalized gaze," and our popular notions of cure. I will also continue to look at how organizations "market" autism and disability -- be it overly positive as to glaze over the issues disabled people face and so make the so-called "typical" society feel better, to "acceptance" campaigns that don't really accept, to campaigns and films like Ransom Notes or Autism Speaks' Autism Everyday Film and the overly negative and generalized media attention it derives. I hope that all of us can look to ourselves, how we grew up, and challenge our conceptions of disability and "normalcy." I like to use myself as an example -- a neurotypical girl who grew up with virtually no disabled people around me; who ignored the mentally challenged boy from down the street as a child because of peer pressure (and fear); I consider myself an example of how to challenge and hold oneself up to criticism everyday FOR THE SAKE OF MY SON, and others like him. I credit Adam for at least starting my journey in changing my world view.

Thanks to a couple of friends of mine who pointed me to the Gillette Hospital Foundation's Cure Pity Campaign. Here is what the copy says on their website:

Most of our patients have medical conditions for which there are no cures.

But through breakthrough surgeries and innovative medical treatments and therapies, we are able to help them overcome some of the barriers they face so they can lead more normal, joy-filled lives.

That’s what we’re trying to communicate with this campaign. That Gillette does provide a cure for one of the most insidious human conditions of all—pity.

We ask you to look beyond the disabilities and see the spirit, resiliency, and determination these children embody.

In these videos, you will see children of various disabilities who are showing us what they can do. No hype, no fear...only what is possible. In the wake of the Ransom Notes Campaign and Autism Speaks' relentless fear-marketing, there are a few of us who would like to suggest that every time you see some fear tactic, that you make a donation to the Cure Pity Campaign of The Canadian Down Syndrome Society of Canada -- the latter which has major bill boards up here in Toronto that say "Celebrate Being." Self-reflection is really important. Listening to communities who are effected by such negative campaigning is even more so and our Canadian organizations can no longer act as if the voice and concerns do not exist and are not valid. With one in seven Canadians recently reported with having some kind of disability, such campaigning may effect most of us in our lifetimes. It may effect our ability to be treated fairly and with respect. It may effect someone's view of us, as they may ignore us altogether BECAUSE we are viewed as incompetent as a result of disability.

Take a look at this story from the UK Telegraph:

Myles Fitzpatrick, a 10-year-old autistic boy who saved his mother's life after she suffered a near-fatal asthma attack, was among those honoured at the star-studded service in Westminster Abbey, London.

Sarah and Gordon Brown with the 10 winners of the Woman’s Own Children of Courage award, and Steven Tomlinson [third from right]

Despite severe autism, which means he is unable to carry out even simple instructions, Myles dialed 999 and directed paramedics to his home after finding his mother fighting for breath.

As a good friend said, fear is good when you want to make people STOP something, like drunk driving. Fear immobilizes. Hope mobilizes. If you feel hopeless from all this negative campaigning, go to these sites and keep perpetuating LIFE and something tangible for our children's future. Send a strong message.

Thank you Ari Ne'eman

2007-12-15T09:43:00.001-05:00

Thank you Ari of The Autistic Self Advocacy Network (ASAN) and others who supported the petition drafted by his organization. Ari's work to demand the withdrawl of the New York Child Study Center's Ransom Notes Campaign has been run in the New York Times, The Wall Street Journal's Health Blog, and the New York Daily News.

I once again call upon you out there to sign this petition. This campaign is not okay. It does not consult the very people it claims to "help," and it continues to perpetuate the fear and stigma it so claims to want to stop.

Is ANY publicity "good" publicity?

2007-12-13T16:29:00.000-05:00

I am sorry I haven't been around to write about the the New York Child Study Center "Ransom Notes" Campaign until today. Here is some more reference to it. The Autism Acceptance Project has signed in support against this campaign with The Autistic Self Advocacy Network . The Gimp Parade , Not Dead Yet, Whose Planet Is It Anyway, Susan Senator, Autism Vox, Alex Bain, and others have written on this and I urge you to read, if you have not already, or click on Autism Hub to read more from other excellent bloggers.

I was even more stunned when one of our friends, upon stating her disappointment over the campaign received this letter from its board of directors:

Dean Robert Grossman, Michael Recanati, and Ira Statfeld forwarded your email to me, and I am responding on their behalf.

The NYU Child Study Center's "Ransom Notes" public service campaign is designed as a provocative wake up to create awareness and spark dialogue about childhood psychiatric disorders, one of America's last remaining silent public health epidemics. Twelve million American children and adolescents face daily battles with psychiatric disorders. Untreated, these children are at risk for academic failure, school dropout, substance abuse, suicide, unemployment, and imprisonment. Children who do receive appropriate treatment, however, can learn to function and thrive.

"Ransom Notes" may be shocking to some, but so are the statistics: suicide is the third leading cause of death among young people ages 15 to 24, and serious emotional problems affect one out of 10 young people, most of whom do not get help. The strong response to this campaign is evidence that our approach is working. We acknowledge the challenges faced by individuals with these disorders and their families. We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve. We want this campaign to be a wake up call. Please join the dialogue.

Harold S. Koplewicz, M.D.
Director, NYU Child Study Center;
Arnold and Debbie Simon Professor and Chair,
Department of Child and Adolescent Psychiatry;
Sr. Vice President and Vice Dean for External Affairs,

As the ASAN letter says,

While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as “a detriment to himself and those around him,” it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.
and

Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them.

I urge everyone to sign the petition against this very dangerous campaign. Not all publicity is good publicity. All we have to remember are the recent mall, church and university shootings to know that. I also think that most of us agree when the rampage of negative campaigning does not reduce stigma -- it only increases ignorance and fear.

YOU CAN ALSO COMMENT HERE AT TODAY'S NYT ARTICLE

Happy Holidays from our Board

2007-12-07T09:32:00.001-05:00

Let me introduce to you The Autism Acceptance Project's Board of Directors: Bottom Row from left to right is,

Andrew Brown, Ellen Yack, our new President of the Board in centre, Michael Moon (who was recently featured in The Ottawa Citizen which got cut-off in this online version), my son and honourary board member, Adam Wolfond, Mira Davis-Kelly (part-time assistant and designer of our online newsletter), and myself, Estee Klar-Wolfond.

Top row from left to right is,

Brian Henson, Martine Stonehouse, Jamie Gold (active advisor), Mark Persaud and David Hill.

We look forward to continuing to lecture at schools and universities in our community and abroad, to conducting support groups, and educating governments with regard to the various needs of autistic individuals and to enhance understanding. We also look forward to further developing a very active membership of autistic Canadians at this governance level.

The Board of Directors wishes everyone a peaceful holiday season.

Live Strong

2007-12-03T09:58:00.000-05:00

I was just in NYC this past weekend for the Michael J. Fox's Foundation Gala. Henry insisted I get this photo with Lance Armstrong. So, in keeping with the "Live Strong" theme, I'm going to express it in the name of autism.

Also, I didn't have a chance to post Roger Collier's article from the Ottawa Citizen until today -- Autism Reconsidered. I also post it here within this theme.

I really like the article, compared to how other journalists have mostly written about autism to-date, almost always over-simplifying a very complex matter. Most of all, I like the ambition and intention of non-autistic people who strive to understand the views of disabled and autistic individuals.

When I say in the article that Adam "regressed" because of the ABA that was conducted early in hour home before he was two, he did. He has progressed without the use of it, exclusively. What I mean is, the "breaking some tasks into small parts" bit of teaching is something we do often here in our home. Yet with many instructors, ABA or otherwise, he lost some of the skills that he came to acquire on his own. He learned mostly with play therapy, music, exposure to new things, videos, computers and more. I found many therapists did not understand his learning style. I found that they tried to squeeze him into a box in which he did not fit, and those who used the method, or who had low expectations, made him anxious. I found that some therapists did not respect our family values (one told me that nursing Adam still at two was wrong).

Often when you hire someone to assist you or members of your family, they see their role as having to fix things. I wonder how much of this is an encumbrance on them as clinicians? I also wonder how much of this expectation from families shape a clinicians approach to autism? I will admit, there were a few who came into our home -- at the time of our early expectations of eradicating autism -- who said that we had to "accept" Adam and "enjoy" him. In those days when the fight seemed the more honorable route, I got angry with people who didn't want to battle his autism with me because it felt like giving up. At the same time, people who say "accept" should not beleaguer us with their low expectations. Here's one more definition of acceptance: it means that Adam is just as entitled as anyone else -- no less valuable and no less human.

What if we didn't construct a system for autistics that focuses just on fixing them or extinguishing autism? What if we focussed on their innate ability to learn? The wholeness of the child (for lack of a better word but I use it since our kids are conversely often referred to as broken). I want parents, like me, to have choices. We don't want to be fixed. We want to learn, grow, live and be included. Acceptance has propelled us forward and Adam is included in a "regular" school, with an aide. Acceptance has not forced us into isolation.

We did not pull Adam out of all therapy, so if you hear from others that I advocate "doing nothing" for autistic individuals, they are misconstruing the message. In Adam's case, we had to modify the approach to his therapy, and those modifications are always occurring as he changes and grows. I am all for one-to-one assistance. Also, those who want to claim that I am against ABA are mis-characterizing me and the role of The Autism Acceptance Project. There are many people who traverse this path and who love their kids, and I know many families who have little else to acquire here in Canada, so they are working with their teams in the best way they can. Yet, I haven't met one fully satisfied parent. The real fact is, in Ontario, there is little choice in what families can acquire in the name of support, and the overriding view of autism is that it's a horrible thing, which of course, I don't believe. I believe that view is extremely damaging to our children. I know there are challenges - some of which are rooted in perception, others which are real, perhaps exacerbated by lack of understanding and support.

If ABA (which ABA instructors are beginning to say in their classrooms does not work for all autistic people, and who are already expanding their methods outside of the ABA box), works for a family then they should get that assistance (and perhaps the ABA community might feel some solace in knowing that their child's right to assistance need not depend on devastation rhetoric). I am ready to acknowledge that ABA has evolved and it is not pure ABA anymore anyway. What needs changing is an evolution of our understanding of autism from autistic people as well as research that helps us learn the best way to assist autistic people -- from family attitudes to medical approaches to educational methods. We may also need to accept that our community will be diverse within itself. As in the deaf community, there will be branches of belief systems and some of these viewpoints will be influenced by whether or not parents share the disability, or at least share in a sensitivity to "difference."

Back to services, if I need an AAC device and training for my son, then I should be able to get that for Adam without having to travel to the U.S. to find that expertise. If I want my son to be included in the school system, and I want to hire an aide who will assure his safety and learning, then schools should accept that as much as a seeing-eye dog should be accepted. If we are all committed to finding the best ways of assisting our children as well as the adults living autistically, then it can be positive. What I fear is a kind of re-institutionized-like policy for autistic people -- that all autistic kids must be surveilled and go to segregated schools. If the program of surveillance is to simply re-assess a child's need (a child diagnosed early may have been misdiagnosed), and the methods are more expansive -- from play, music therapies and more options suitable for the specific child -- then I'm in support. For Adam's sake, I want to work with others if they are willing to work with us in order that we keep moving forward and say a farewell to days past. We cannot do this, however, without autistic people helping us through the process, or at the exclusion of them. And no movement should feel threatened by including autistic people. If a method is good and really strives to understand autism, it will not wither with the inclusion of autistic people who can communicate.

The truth is, the reality in our home is different than in someone else's. While one parent may wish to wave the magic wand of never having brought a child with autism in the world, there are others, like us, who sigh and wonder what we would have never learned or gained if Adam were different than he currently is. Do I want to take away some of these struggles? Absolutely. But it is very fine line we tread in not only preserving his self-esteem, but in recognizing that his challenges may be the very things that enable his gifts and may have formed much of his unique personality.

What is a mis-characterization of TAAProject's advocacy is a view that there is only one way to do things. We we wish to transmit the message that the huge GAP is society's understanding and attention to the way disabled and autistic people feel about themselves. We need to listen to the the kinds of assistance that they feel was helpful to them as children in order that we may learn (as well as what they need as adults), and we need to listen to how they want to be treated by others in society. We are still stuck in a recent mind-set of institutionalization of cognitively and physically disabled individuals, and in the wake of a disabled civil rights movement (started in the 1960's) we have irreconcilable images and views of disability. This is what we are seeking to change.

If we have different views about curing autism, then that is current truth. That truth may be in part because of our recent history -- discordant with our view of the disabled-person-as-child, with the presumption that they have no means to self-advocate. There is risk to shifting perception and expectations, and to allowing our children to make mistakes, or even letting them move and exist in the world atypically. As parents, we may have to let go a bit and let our children take some of those risks.

We have decided to live our life fully and to be proud of who we are. I do not lessen my expectations of Adam, although clearly see that his path to success may meander. I still expect him to attend university. I expect anxiety, sadness and joys. I do not expect life to be easy, but I do not lessen my expectations that he, like my other step-children currently studying law, could one day be a lawyer for disabled people. A mom can dream inasmuch a disabled person can dream of freedom, for those of us who persevere may make dreams a reality. If you are naive, you position, quite incorrectly, the "Joy of Autism" blog and person behind it, as ignoring all the obstacles that exist. Instead, we live in spite of society's view of us as Tragedy. [capital intended]

This is why the Klar-Wolfond family merges with other autistic people who feel that living "the dream" also comes from a compromise by society -- accept us and let us roam and be included without so much fuss, without grim faces, without so many serious questions, without so many barriers -- many of which are perceptual which lead to passivity, or the belief that it's "too hard" or "too expensive." When we have to keep perky and bright for the sake of another's grim face upon our arrival, that is a stigma we face everyday that is exhausting to us. Wouldn't it be nice if we could walk into a new room that smiled at us? Adam is a bright and beautiful little boy. He does not deserve to be peered at for the sake of it. He deserves to be celebrated -- so says his mother.

While there are devastating moments in everyone's life, being autistic does not need to be characterized as a devastating condition. At the same time, it is okay to speak about devastating moments. Yet, we need to qualify them. What is a tragedy is characterizing an entire life within a thirty-second frame, sound-bite or headline for the sake of fear-marketing. That ignores nearly forty years of lobbying by disabled people that sought the benefits our children have today, as well as the expectation I have now that my son has a right to be a contributing member of society. There was a day when a parent couldn't even have that expectation.

I decided to put Adam's picture in the paper because we are not ashamed of who he is. We are so utterly proud of him. His picture smiling at you says, he and all autistic people DESERVE BETTER -- they deserve to be in our communities, to be included in our schools, and to receive the basic accommodations to enable that to happen.

WE DO NOT NEED PITY. WE NEED UNDERSTANDING. WE ARE HERE AND WE LIVE STRONG.

Why CBS Has Got Autism Wrong

2007-11-26T12:20:00.000-05:00

I was forwarded a report on adults with autism on CBS (in the autistic realm, many people prefer to be called autistic adults -- but the preference differs among individuals).

Why does this CBS report have autism pegged all wrong? What does it show in the way society lacks understanding about disability?

I feel like going back a bit in history. In 1987, Reagan on George Bush's recommendation named Evan Kemp Jr. a commissioner to the Equal Employment Opportunity Commission. The US federal C. Boyden Gray, says Joseph Shapiro in his book No Pity: People With Disabilities Forging a New Civil Rights Movement, had opened Bush's eyes -- noting that disabled people were seeking self-empowerment. Gray was not disabled but "he had an instinctive understanding of the fight for self-worth..." Gray was a southerner who attended Harvard, and "he found that his northern classmates automatically assumed he and all Southerners were bigots, rednecks and stupid....'The stereotype was that you spoke with a Southern accent, so you've got to be dumb.' Gray empathized with the desires of disabled people to overcome low expectations and their distaste for being stereotyped...

During the negotiations over Section 504, David Stockman's Office of Management and Budget drafted a new White House position that applied a cost-benefit analysis to proposed disability benefits. To the bean counters at OMB, it seemed sensible. The less a disabled person -- and presumably the more likely that person was to work and live independently -- the more help and rights he or she got. The more disabled someone was, the less he or she was guaranteed. When Kemp [himself a paraplegic] confronted Gray with a leaked copy of the OMB memo, Gray agonized. Kemp, after all, was severely disabled. And Gray knew he could not justify a position that would put a price tag or a cost effectiveness formula on his friend's worth. The proposal was killed." (pp.123-4).

It was perhaps this that lead Gray to understand the meaning of a civil rights bill for people with disabilities. "He [referring to Kemp] reached out to explain the experience of disability, not to scream at me."

"Kemp took the Bush campaign. Three months later, Bush pledged 'I'm going to do whatever it takes to make sure the disabled are included in the mainstream.' Those simple seventeen words, spoken during Bush's image-turning acceptance speech at the Republican National Convention, marked the first time that an American Presidential nominee had acknowledged disabled people as a political force... for several years Bush pollster Robert Teeter presciently had advised his political clients that disabled people and their families were growing into an untapped community...

Later, at the polling firm of Louis Harris and Associates, Louis Genevie, was proving [this] instinct correct. [He] was tracking the voting preferences of disabled voters." They swung markedly to Bush. "Genevie wrote to Bush that disabled voters who had switched to bush had constituted up to one-half of the four million difference of popular votes between Bush and Dukakis. This made up one to three percentage points of bush's seven-point margin of victory....his polling did not even count family members who could be equally strong activists."

"A candidate ignores the issues of disabled people at his own peril," Genevie would later say.

Now let me see, it is said that there are between 40-50 million disabled people in the US today. That is not counting people who become disabled as a result of disease -- many with Parkinsons and Cancer reporting the added stigma in society and the workplace as a result of their diagnosis. If we included that number, Shapiro estimates back in 1991, that that would have accounted for 120 million disabled Americans.

What has happened? Few people are aware of these events, despite their significance for millions of disabled people. Non disabled citizens ignore them. Disabled people, while they have protested on Capitol Hill, cannot do so in large numbers, despite the large numbers of disabled people out there, so it doesn't make headline news. Together, blind, deaf, epileptic, autistic and other disabled people have come together for one cause -- access as a civil right, and to foster a greater understanding and acceptance of disability as an norm of humanity.

So what is wrong with the CBS report? Many things. It perpetuates crisis and fear -- the oncoming "burden" of the many children currently diagnosed with autism.

While it suggests that many adult autistic people CAN contribute to society, it still fosters the fear of autistic people -- their financial burden on the rest of us without viewing their contributions. It sits like a bounty over the heads of autistic individuals.

"To what extent do we have a duty to accommodate?" I often get asked. To me that's like saying to what extent must we allow African Americans into our society? Without speaking to the people where the issues reside, we can never grasp the meaning of exclusion, and will only fear what we have to give up. Of course that fear is often unfounded and based on a false perception.

What is especially traumatic is that despite the headway made in our history by millions of people, Allison Tepper Singer still gets the soapbox -- and makes others worry along with her -- thereby continuing to create fear and despair. The same issues are present in my family, and in many families that come our way. Adam's siblings may have to watch out for him one day. Instead of it being a burden, we try to foster it as just a way of life -- a way of life that in our history would have been obligatory and not seen as a burden in this era of egocentric individualism.

Isn't it is also disturbing that the young man folding towels was not being paid anything at all, for all work should be compensated -- even for work in training. What is most fearful is the creation and continuation of a caste system based on disability -- or the presumption that ALL our autistic kids will be able to do is fold towels and stock shelves. Of course, we know that that isn't always the case, and while there is nothing wrong with sweeping the floors, let us not limit the opportunities and possibilities for many autistic children who will soon become adults.

And speaking of work, how can disabled people get to work if they are not equipped to at least begin to pay for public transit? How can they get to their first job interviews without financial support to launch them? And what happened to a truly inclusive society with the special transit that must be booked well in advance and does not always allow non disabled people to travel with them on special transit?

Our attitudes are the burden for autistic people that keeps them at bay.

The only way to really understand what autistic people are confronted with everyday is to talk to them -- those who have to spell out a sentence letter by letter, slowly. Or those who rarely talk or get to talk at all as well as to those who also have never talked as young children but can talk today. CBS didn't talk to autistic people. They only spoke to an Autism Speak's spokesperson who likes to spread fear instead of qualifying concerns and reframing lives in order to empower caregivers. The mother knew her son could contribute -- I, for one, would have liked to have heard a bit more from her. Yet, it's not just the service system that needs improving, it's our attitudes. As in the history of disability rights, autistic people must help run the systems that seek to assist the autistic children who will one day become the adults.

George Bush said, "'Let the shameful wall of exclusion finally come tumbling down.' He put his pen to the bill. Then Bush turned to Evan Kemp, who was sitting next to him on the podium overlooking the Washington Monument, and gave him an affectionate kiss on the head.

Bush's administration would promptly issue regulations for the ADA. There would be no four-year fight like that over Section 504. The law took effect in 1992. Many companies, particularly large ones, complied eagerly and reaped the rewards -- new customers, new workers, and good publicity. Passage of the ADA was an earthshaking event for disabled people. It signaled radical transformation in the way they saw themselves -- as a minority that now had rights to challenge its exclusion. But it was an odd victory; as radical as the ADA's passage would be for disabled people, non disabled Americans still had little understanding that this group now demanded rights, not pity." (Shapiro, pp. 140-141).

If there is any crisis that CBS reports, it should note the crisis of misunderstanding, intolerance and continued stereotyping. As Susan Goodman, President of CSAAC noted, "Because people with autism are the most difficult to serve, they are the first to be written off." (Shapiro, p. 144).She suggests that because of this, the autistic are the most segregated of all.

Presidential nominees might also take into account the numbers of disabled and autistic adults living in our society today -- valid, valuable and lo and behold -- voters.

One of My Favourite Blogs

2007-11-22T12:57:00.001-05:00

Kay Olson's The Gimp Parade. Check out this poster "Good access is good business." Click on the picture to enlarge.

Absolutely.

Also check out The Perorations of Lady Bracknell:
"We exist in every culture; every race; every class; every creed; every nationality; every political party. We have arrived here as a result of accident, injury, illness or simple genetic glitch. We are adults and we are children; we are men and we are women; we are straight, we are gay, and we are bisexual. We are too frail to leave the house and we are strong enough to yomp across continents. We are desperately ill and we are at the peak of physical fitness. We die young and we live to a ripe old age. We are accepted in our communities and we are locked away in institutions. We have been this way since birth, and we have been this way since yesterday. We are the premature baby and the great-grandparent. We are the criminal underclass and the pillar of society. We are the warmonger and the pacifist. We are the teacher and the student.

We are, without a shadow of a doubt, the most diverse minority group on the planet. We are everywhere you look, and yet you do not see us. We are one in seven."

The Media Does Not Convey The Whole Message

2007-11-21T08:54:00.000-05:00

As many of you know, Amanda Baggs and many people at the AutCom conference in Edmonton which was held in October, will be on CNN this Friday night on Anderson Cooper 360. The shortened version aired Monday night and you can read the transcript here. I am interested in the way people construe meaning. TAAProject has heard from more autistic people as a result of the broadcast. It has also received calls from people who want to "heal" those they saw on the broadcast (which of course would be offensive to those very people who were on CNN). It is the nature of the media beast, of expression and art itself: what one sees and hears is a result of one's own experience and the challenge is to study and stretch beyond ourselves (the proverbial "comfort zone"). Please read Amanda's post on her feelings about the broadcast.

I am concerned for autistic people who really put themselves out there for the purposes of getting out the message. It's a Catch-22 situation. If you are visibly disabled, you are discriminated against or receive the insult of low-expectation. If you are "functional" or invisibly disabled, you are questioned or treated with disdain and do not receive the understanding you need in order to be able to contribute. People have a hard time understanding autism in the way of dissonance of skills --be it in "doing something" inconsistently, or even verbalizing.

Despite all this, I want to say that I am really am grateful, because I am beginning to understand how frustrating it really is. Communication is already challenging for many of us, never mind jumping over such strong stereotypes that are deeply embedded in our society. While television can be important to get messages out, the work behind autistic civil rights (in the way of the writings and contributions of autistic people) is even more so. The media cuts and edits dialogue, extracts meaning, and it gets filtered or interpreted in ways not always intended by the person being interviewed. The purpose of many reports is to produce a general message for public consumption. Sometimes it is meant to sell papers and acquire viewers through sensationalism. We know that the messages that come out can be whitewashed. There is nothing simple about human or autistic experience, and the media tries to distill it for the simplest message, which is not always fair.

We've all heard that the grade level required to read the average newspaper is quite low. I found this blog "Common Sense Technology" that suggests that newspapers are written to the 3rd grade reading level. Adam will soon out read us all (he has been reading since 11 months of age and he is only 5 1/2). Seriously, just think about how simple the arguments have to be! It is important to read outside of the newspapers and what gets portrayed on television and it behooves us to "question everything." For instance, I let others know that the piece would be on on Monday night. I received emails back asking, "is this an accurate report?" That is the right question!

Still, while activism doesn't happen as frequently on Capitol Hill or Parliament Hill, it has ended up on the Internet, and the media does a great deal to send out messages to a larger public. That said, the media and the public are still learning (some might disagree saying that many reporters never learn -- Margaret Wente's report this past year in the Globe and Mail on autism was most definitely an ill-informed piece of journalism and did not "show two sides of the story." Sadly, it is not an individual case of sloppy journalism). As a parent, I keep learning about the community to which my son belongs, and I want to stand beside him. That means I want to stand beside all autistic people, for they continue to teach me so much and I also stand with parents who are open to learning from and assisting their children.

There ARE journalists who are really getting interested in the more complex story. I wish to encourage a Pulitzer Prize-winning one! Why not? Do autistic people not deserve it?! What about an article to discuss disability rights and culture and perhaps autism as the newest disability to be confronted with extreme bias that is at the ever-confusing ethical crossroads with bioengineering and Neuroscience -- that parallels with questions of how much a society should enhance itself? It should be written by an autistic journalist, but can be attempted by a non autistic one if the perspective (and inherent bias) are qualified.

For certain, opening up one's life is really difficult. So much vulnerability and the discrimination is ever more apparent when it gets met with such hostility, disrespect and utter naivete from some people. I look at it this way, if one is open to listening and learning, and keeps being open to confronting their own bias in order to understand before just discounting the perspective of the autistic person, then the learning has just launched.

I keep thinking of how much gratitude I have for the people who continue to go out there in the face of such adversity, because I really can't come up with any other way than to open up in the face of it. Adam's opportunities have been built on the backs of autistic people today and who before them came people like The Rolling Quads at Berkeley, and many other people in our disability rights history. Ed Roberts, a quadriplegic who ended up becoming the chief of The Center for Independent Living -- an agency that "a decade and a half earlier had deemed it 'infeasible' that he would ever hold a job.'" He had a son, Lee, and later "underscored the silliness of a system that tried to write off people based on the severity of their disability." (Shapiro: No Pity: People With Disabilities Forging A New Civil Rights Movement,p. 54-55). The events at Gallaudet University and the protests that lead to the appointment of its first deaf president I. King Jordan, were significant that lead to the Americans with Disabilities Act just two months later. There are tremendous acts of courage and perseverance, in addition to these events, by many other disabled individuals of all "functioning" levels and "severities."

Many people do not even realize that the opportunities they have for their autistic children today exist because people with disabilities fought, through adversity, for the very rights we are beginning enjoy. Yes, we still have a long way to go, but at least we have a path to go there and I do not want it gated. Organizations forged by parents typically "[aroused] the public's fear of the handicap itself" (Shapiro). In the case of the Muscular Dystrophy Association's telethons, for instance, "the telethon makes viewers more afraid of handicapped people" (Shapiro, pp. 21-22.). We witness the same "marketing of fear" today in our own autism organizations lead by non autistic people, who put autistic children as "poster kids" in order to call for the prevention of autism while ignoring the adults. I hope for a day that non autistic people work with autistic people without talking and advocating over them. I write this because don't you know the saying that we teach others what we most need to learn? Michael Moon will soon become our new TAAProject's (The Autism Acceptance Project) President for this very reason. Brian Henson and Martine Stonehouse have been activists in their own right prior to the incorporation of The Autism Acceptance Project and we are lucky to have them on our board.

Some parents currently attack our autistic members of society as being "not autistic" or not "having the right to speak" because they are "higher functioning" than the children they have. And yet, people with all kinds of disabilities, and severities of them, have fought for many years so that our children do not end up in institutions, or can go to community schools, and have access to special services and accommodations.

Perhaps this is what we might keep in mind when the next show will be aired, the next newspaper report published. The media is watching and listening and learning. I encourage all autistic people to hang in there and continue so that no one speaks on behalf of you, for no one should and no one really can.

The Ineffable Language

2007-11-13T08:46:00.000-05:00

Here is Grandma and Adam on around the University Music Hall and Philosopher's Walk. Adam likes it there -- just like his Grandparents. My parents used to take me at Adam's age, to U of T music concerts in the Edward Johnson building (they are trying to take Adam now as well). Music was a major part of my life as I took dance, played many an instrument and was a singer in choirs and later, in bands. Of course, those of you who've been reading this blog know that I moved into fine art history. My love of art, music and philosophy was cultivated by my father who collected. He also made me read Wagnerian librettos by the age of twelve despite my protests (I'd rather listen to Michael Jackson at the time), and he believed that a mighty discipline could be transferred from a military-like barking: KICK! those Kabalevsky Kicking Stones, he said over-emphatically from behind my shoulder (which ultimately lead me to win first prize in the Kiwanis Music Festival).

But a military-like discipline was not my style. I was a quieter, poetic type who preferred to explore my creativity through other pathways (reading books under my covers with a flashlight was common). I never became that concert pianist, although I want to play again as I struggle to read my notations (I was always better at playing by ear). I never became a visual artist, despite my appreciation. Now at forty-two, I try to work on the craft of writing, recognizing that I will spend the next thirty more years of my life, if I am lucky, attempting to develop it. What of this do we pass on to my child? While he may appreciate music he may not like to play it, or even be able to. He may be the consummate listener.

The most awesome savants work endlessly at their craft -- the sheer obsession and focus that nurtures the end product. While a gift is clearly present, I am not convinced that even savants do not work tirelessly to become "savants," for it is the intense focus, or "obsession" as some call it, that creates the beauty and the ability. I am disturbed when "plain old" autistic people, for the mere fact that the "do" art, are called "savants." This happened when I curated The Joy of Autism: Redefining Ability and Quality of Life exhibition. This cheapens their Personhood, and the propensity to artistic endeavour for all human beings -- for art is nourishment. No, not all autistic artists and musicians are savants for the mere fact that they are artistic, or have some ability and enjoyment in the making of it.

Adam enjoys music. He likes to sing, though talking is much more difficult. As I learn that song is deeply embedded in our brains and can be "extracted," if you will, in even the most seriously brain injured, I believe that art and music are a part of human mystery -- the human "spirit." Despite all attempts to map it and observe it on FMRI's and TMS's (Transcranial Magnetic Stimulation), I wonder if we will truly transcend what has fascinated philosophers for all time. Isn't it part of being human to question what makes us so? What will happen if that mystery disappears? Will we still be human? Will science decode the very nature of humanity -- the deeply embedded stuff of consciousness? While art informs us of cognition, it also equalizes and unites us. At least it should.

Neuroaesthetics is fascinating to me, and I'm in the process of studying it. It is thrilling to see this confluence of ideas -- of art, philosophy, music, and the sciences. My father used to hate the fact that universities begin to "teach trades," if you will. An engineer turned businessman out of necessity, his worldly entrapments abated on Sunday mornings as he engaged me in discussions about Roman History, Linguistics, Emmanual Kant, Baruch Spinoza -- and then the perils of the MBA. Perhaps he was a purist in thinking that universities should provide a "universal education." I have inherited such a belief (although I struggle to attain the same level of focus as he in my studies). In art history, how intrigued were my professors when I brought in musical pieces and examples from other genres to illustrate a period. I owe it to my father -- the man behind the camera, by the way, in many of the photos I post here to my blog.

Last night, Oliver Sacks came to speak in Toronto. He has popularized the merging of such ideas -- of art and science in his new book Musicophilia. I quite enjoy listening to anyone discussing art, cognition and the tacit suggestion that what we don't know makes us fully human -- of the unbidden, the underpinnings of the brain, which we can also understand through injury, and the capacity of the brain to compensate and adapt. While I am fascinated how science can observe the functioning of the brain in action, I question if science, through its "simple art of observation" as Sacks says in his book, "may be lost, that clinical description may become perfunctory, and the richness of human context ignored." Isn't this missing from our current scientific studies in disability and autism? The human context? The human experience? Afterall, when science de-constructs, what might it take away from human experience?

I will hopefully be writing more on this myself in the coming months, as the arts are my true passion. I revel in Adam's own unique experiences, and I try to document the things he loves and the context in which he places them in order to try to make a sense out of them. He enjoys the number 4 today, and usually, 7 soothes him. When he repeats the number 11, I know he is very distressed. And what of his art that embeds letters underneath his staccato (okay he is still only five and a half), brush strokes, or his innate musical ability (which as Sacks notes, tends to be innate in all of us, but is subsequently pruned)?

So I find it ironic that my son traverses the path of his Grandparents and of his mother at the university's Philosopher's Walk. We never know what will become of it, of us -- the matter of it all. You see, not everything can be distilled. There are some things that are just plain ineffable -- music and the human spirit perhaps just two of them.