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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

Tuesday, June 10, 2008

 

Inequaltiy, Discrimination and the Medical Model of Disability

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

10 Comments:

Blogger Club 166 said...

Great reply to Sawyer's ignorant comment, Estee!

Joe

4:23 PM  
Anonymous Tara said...

Estee, great analysis - I admit having rather violent reaction to Sawyer's "heartbreak" comment and thought immediatedly about similar parallel with the race issue. Whole segment had a bit of "those uppity Negroes" tone :-(

4:46 PM  
Blogger farmwifetwo said...

I am one of the few that I know of with full inclusion of my youngest. That includes full modification of his social studies, science, reading comp, Journal writing etc modified to use Writing with Symbols etc.

His DRA scores all came back Gr 2 except Langauage Comp - not bad since he's barely 6.5yrs old. They are still working on the modifications to test his comprehension level with help from the PDD Teacher (floating teacher).

The school is going from 2.5 to 4 EA's next year - he will retain his full support, inclusions and modifications, OT and SLP. I do tutor both at home. I think this is very important to help both of them.

They finally understand... as the VP said "it's not just teaching a foreign language to him (reading, writing, spelling, speaking, communication) it's teaching him to think in that language.

Yet, I still get asked by others "are you planning on putting him in a special classroom?"

Why would I???

Now if only the lobby groups.. from the cure, to the neurodiverse would lobby for services and supports and better school books and EA's...

Eldest is even getting a proper social and behavioural program, support for it and OT services next year.. FINALLY and he's going into Gr 4.

There's no heartbreak here either.. but I'm getting tired of begging for services and supports.

7:00 PM  
Blogger geosaru said...

" By focusing on services, and not individual needs, students with autism are classified and individual needs are not being met."

That's the main problem I've had with the school people who work with me in special ed - so many of them, I can clearly tell, are evaluating problems that come up involving me from the perspective of "what's her deficit and how do we fix it" rather than as an interaction of factors of environment and my learning style. When I do type or speak to them helpful information, it is thoroughly ignored (quite a feat, I'm sure, but they seem to have got it down). But seriously, though, how does this happen with them? I mean, it's well known that there's a huge sensory component to being autistic, so how come environment and alternate presentation of instructions/materialnever occur to them? The general ed. teachers seem to get these things real well, and they don't have autistic family or special training (aside from teacher training of course).

Another related thing that has frustrated my parents and I, is how at age 18 I'm being put through a slew of evaluations to determine which autism category I fit best. Well, if they've got to do such extensive testing anyway, why does it even matter what label I have for services? Shouldn't services be individually based? That's my philosophy, and my parents agree that they don't see why it matters so much to them. It's really a sign of a broken system.

2:36 AM  
Blogger farmwifetwo said...

Geosaru - the very thoughts you has were touched on in the book "The Mislabeled Child".

I went through the "unless the dx has ASD in it, it's JUST a learning disability" with my eldest son.

We're leaving the label in place to keep the services etc and moving on to proper psychometric testing, proper S&B programming... b/c he's doing VERY well.. but the playground interactions are becoming beyond him.

It should be based on each individual child... but right now, all $$$ is directed at Autism... courtesy of the lobby groups... makes good politics/publicity unfortunately.

I got that call from the school the "something is going on" a week ago. I had noticed sensory issues at home with the wacky weather lately and end of school. "When does the OT come?" "She was here today" It was 3pm. "Call her, I'll send a list of suggestions". She came again 2 days later... luckily, I have nagged enough, my support staff is listening finally... they put in the sensory diet, no muss, no fuss and he's doing much better again.

But that took YEARS to get to that point, to listen and learn, with the elder paving the way.

What shocked me the most is that my EA never came up with the idea.. her son is btwn mine in age and on the spectrum...

S.

6:40 AM  
Anonymous Anonymous said...

I didn't see the segment, but I guess I feel like it doesn't have to be an either/or situation. My son is fully mainstreamed, he is mostly happy and well-adjusted. We will continue to help pursue those goals of happiness and education for him. He is thriving in school academically as we continue to strive for acceptance of him for who he is while at the same time trying to teach him skills he struggles with. Some kids struggle with math, my kid struggles with making friends. I have NO problem trying to give him the tools to open a dialogue with another child because it is what HE wants. I believe I can do that without making him feel like something is "wrong" with him. And my hope is that the other children will continue to learn from HIM and his unique way of viewing the world.

I am NOT a "frightened, ill-informed" parent, and we DO see a biomedical doctor, who does nothing but help my son's health (which is a HUGE issue for him). We don't do all the things she suggests, but the things we have done have made phenomenal differences in how he feels. I am glad his stomach doesn't hurt all the time anymore and he's not up screaming at night from pain like he used to be. I am glad relieving that pain for him allowed him to start talking to the point where now he yaks all the time! He is so happy and healthy!

I appreciate and applaud your viewpoint, but I guess I am tired of being portrayed as an ignorant, freaked out Mommy who is trying to "fix" or "cure" her kid. I'm not trying to do either.

I understand the frustration at the "heartbroken" comment. I am not heartbroken either.

12:40 PM  
Blogger Estee Klar-Wolfond said...

Anonymous,

Well, I am glad your son's tummy doesn't hurt anymore, but this is not universal for all autistic individuals, therefore, this medical approach while perhaps helpful for some individuals, cannot be prescribed as a remedy or a promise of "recovery" for autism. After your comment here, I wrote the following footnote within my post:

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.

6:20 AM  
Blogger farmwifetwo said...

This comment has been removed by a blog administrator.

12:26 PM  
Blogger Sustenance Scout said...

Estee, you are incredibly thorough and this post is amazing. I posted my own take on the Diane Sawyer mis-comment last night (http://www.sustenancescout.blogspot.com). Karen in Denver

8:37 AM  
Anonymous bombaygirl said...

I wanted to slap that fake look of sidmay and pity off Sawyer's face! And then the little condescending laughs. Grrrr. Thank you for such a well written rejoinder.

1:48 PM  

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