Concepts of Normality

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

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

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

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?

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

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

"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?

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

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 ...

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

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

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

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."