Poverty, Disability and Exclusion

From inclusion-international.org

Questions for Candidates Regarding Inclusion

Go to www.endexclusion.ca for more information.

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Society As A Human Product

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

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"

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

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"

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

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

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.