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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, November 03, 2007

 

Autistics 'We Don't Want A Cure'

Today in the Globe and Mail, Andrea Bradford-Lambert and her son Griffin are interviewed with others regarding the philosophy of acceptance.

There is one thing I would like to correct Mr. Doherty on: we are NEVER "ashamed of" our more severely effected disabled members of our society. As much as I respect Mr. Doherty's right to seek the assistance he needs to attain for his child, I do not agree with this mischaracterization of the neurodiversity or acceptance movement.

I also do not agree that autism is just a "difference." It IS a disability. The "difference" analogy comes from the notion that there is no normal -- that normal is subjective and concepts of normalcy can change over time. Therefore, we are all "different." We are concerned that pejorative referencing alone (extreme characterizations of autism as "a living nightmare" and the like) will increase the stigma, prejudice and LACK of support. The latter may be replaced with government-mandated normalization campaigns which suggest that if you are NOT like others, you are less valued and, yes let's take this jump, do not deserve to exist. One might say that you are doomed if you do not fully "recover" from your disability.

It is not to say that disability is not challenging for families. On all levels - with these positive or negative sketches of autistic existence -- we have to recognize the result of gross generalizations and how they come to characterize autism or any disability over time. I feel strongly that we have to hold the media accountable for the manner in which they report about these issues.

The point of the whole "movement" is that it is okay to be disabled (for quick references check out TVO Agenda on "The Right to Be Disabled" as well as website Disbility is Natural to start. Society has an obligation and must recognize an individual's right to be disabled and the access required that is currently denied. In other words, once we value disabled individuals for their inherent strengths and abilities, as well as accepting and accommodating the disability, we begin to dismantle prejudice and overwhelming assumptions that disability is a "fate worse than death" or whatever. We also begin to value inclusion as we humanize the disabled and what they already contribute to society. These values should seem natural in a society that claims to celebrate diversity on all levels. Yet it still seems to be quite a conceptual "jump" for many people, which is reflective how locked into our bias and preconceptions we may actually be.

Let us all work together to find the supports that ALL autistic individuals require to ASSIST them to reach their fullest potential. The argument here is that assistance is an acknowledgment of this right -- not a mission to "normalize," because our assumptions of both what is normal and what is not are constructed on historical bias and abstract conceptions, as we learn from many disability communities.

Also, we all have to recognize that not everyone will agree on what they want for themselves as autistic individuals. While there is currently no cure for autism, other autistic individuals may seek out ways to assist themselves in this complex world. Note the key word is "assist." This may come in forms which we may not even conceive of at the moment, but are still do-able right now by learning from autistic individuals first what it is they need in order to contribute to society as autistic people.

What this Globe and Mail article shows in an attempt at balance, is the complexity and diversity of the autistic community itself, and the fact that there are individuals who do not want to be whitewashed under the autism as "illness" description. Perhaps for this aspect alone, I accept the article as a shift in the right direction. If we can embrace all needs, much like what happened to the deaf community after its virulent debates, we have taken a step forward. Yet, I'm afraid that the Globe article still misses some very important points, which I've already attempted to mention.

There are still bigger steps to take. The biggest is this understanding that the millions of North American citizens who are disabled have a right to be understood and this includes autistic individuals. Autistic individuals continue to generously express their experiences for which they are largely ignored. We all have to learn from their views on what they need to thrive, and their life-experience benefits children because we as educators, clinicians and parents develop empathy and understanding in order to provide more appropriate methods of assistance. Autistic individuals need to participate and be included in society -- and valued for their way of being -- not forced into becoming some normal-seeming simulacrum. Disability need not be "catastrophized." By suggesting the latter, disabled individuals have been subject to human rights abuses exemplified throughout human history. Perhaps we need to keep illustrating those so we "never forget."

Valuing people for who they are will lead to better services and access that all families and individuals require.Some of this may require the right to medical treatment (we do know that because of disability, many individuals are denied the same "treatment" as other citizens in our society), even though disability need not be characterized in the medical context. As a human race, we are all subject to medical conditions that require medical support throughout our lives. A medical construct for discussing autism, as well as other disabilities, does not fully characterize or adequately describe the experience of being disabled. One might not describe one's experience of "being human" in the strictest medical sense.

I do have an optimistic outlook for Adam's future -- my son who still cannot speak at nearly six years of age. As we work for more understanding of autism and acceptance of the way he manifests his communication, I see possibilities of the access and accommodation he may need as he seeks higher education and employment. He may need an aide to help him navigate the outside world, he may need a device in order to help others understand what he is thinking. There is nothing wrong with interdependency in order to attain these goals. He certainly is worthy, wonderful and deserves these modifications by us as society so that he can reach them, and share his life with others. It makes me a little angry when I see money being funneled into "gifted educational programs" -- because these children are "our future," while we view autistic children as our future burden on society. I could go into the giftedness of many a disabled person, even those with "severe disabilities," not to mention the severe anxiety issues of many a "gifted" child. Adam has an equal right to prove that he can contribute and be educated in a manner that suits his learning style and ability to manifest his understanding of the world. A respect for dissonance is what needs to be cultivated by further explanation. For myself, I have better skills in some areas than others. This dissonance may be more extreme in some areas for some individuals. It warrants no less sensitivity and acceptance.

One explanation of this "dissonance" that speaks louder than words is by witnessing an individual who has been taught to communicate using a device. It demolishes assumptions that "just because you can't speak doesn't mean you don't have anything to say." Perhaps that is the best example we need in order to heed our words and monitor our attitudes towards every disabled individual who might otherwise be assumed "unaware," and thus subject to various "treatments" that we as parents and a society feel is in their "best interest."

I also look forward to more discussion about autistic individuals and what they contribute to the Canadian economy -- both in the work force and through their unpaid volunteer and creative work (Bruce Mau in the exhibition Massive Change, estimated volunteerism and unpaid workers to be the billion dollar engine of today's economy). Right now, we only hear about how much autistic people cost, which yet again adds to the stigma they face. I challenge others to valuate their enormous contributions.

So thanks at the attempt, Erin Anderseen of The Globe and Mail. This article was a refreshing change that many of us need in order to move forward, but it's still not the full story reflecting accurately the needs and issues confronting the autistic individuals right now. The article is reduced to the black and white dialogue that the media tends to default to on a regular basis (cure versus no cure) that sadly clouds the real issues and real needs of our community.

4 Comments:

Blogger Navi said...

great article,

Thanks for pointing out that yes, its a difference, but yes, its also a disability. saying its not one means we lose necessary services.


but ack!

the following drives me nuts:
"ASD/PDD-NOS, a designation that in itself speaks to the complications of defining autism. Within the autism spectrum, the acronyms stand for “pervasive development disability, not otherwise specified,” which means Tyler has some of the characteristics of autism, but, unlike Conor Doherty, not severely enough to be diagnosed as strictly autistic."

No, PDD-NOS does not mean less severe. It does not mean 'more severe' either (as you'll find in some publications, like the scary one my son's summer school sent me).

My son has been diagnosed on with ASD. He falls under PDD-NOS because he does not fall under any other autism classification, not because he is any more or less severe than other autistics. It means he's not "classically autistic" but he doesn't fit into other categories, either. I read one commentary that translated PDD-NOS as "I don't know." from what I've read, that's the best description.

11:10 AM  
Blogger Joseph said...

Harold has responded in a post of his own. His argument does not make any sense as usual. For example, he is suggesting that opposition to the Autism Every Day video meant that we are ashamed of "low functioning" autistics. He's also suggesting that criticism of the validity of the "low functioning"/"high functioning" terminology means that as well.

His argument makes even less sense if you consider that many of us whom he opposes have what might be described as "low functioning" children. Of course, he'd probably want further division along the lines of severe behaviors. I think he refers to that as "profoundly autistic." It's not all that clear how Harold wishes the spectrum would be divided and on what basis. However he divides it, though, he'll find some of us will still be in the section of the spectrum he wants to claim is "real autism."

11:28 AM  
Blogger AnneC said...

I'm really not understanding where this "ashamed" thing is coming from. It doesn't even compute. How, exactly, is advocating for the recognition of someone's full personhood being "ashamed" of them? Nobody is denying that some people have very serious challenges to deal with.

I think maybe people who accuse advocates of being "ashamed" of certain autistic people think that if there were some route other than particular 'treatments' or institutionalization, they'd already have been discovered -- e.g., they're taking the existence of "extreme" measures to be proof that such measures are necessary.

And...that's a very dangerous way to think. It's possible for entire societies to make mistakes in understanding a particular group of people, and we need to remain cogent of that at all times.

During the pre Civil War era, there was actually a term ("drapetomania") used to describe a "mental disease" that supposedly caused slaves to run away -- e.g., a perfectly rational response to being enslaved (desire for escape) was pathologized. And people who advocated for freeing slaves were decried as supposedly wanting to "free people to wallow and suffer miserably".

I can easily imagine someone during that era claiming that those who advocated for freedom were "ashamed" of all those "low functioning" slaves who really needed a master keeping them in line.

1:41 PM  
Anonymous mike stanton said...

Thank you!

too often we are told that autism acceptance means denying that autism is a disabilty. This is not true. It is equally false to argue that acknowledging the disabling aspects of autism concedes the field to the "curebies."

We have to stick with the argument that it is OK to be disabled AND be entitled to all the help you need and to be thought no less of a person because of this.

6:53 PM  

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