The DSM V and Services

Filed Under (DSM V, What is Disability?) by Estee on 03-06-2013

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My copy of the DSM V is here. Ari Ne’eman made this address regarding the how the DSM V may effect autism services.

I wrote this response this morning on the Facebook link:

I agree with his point that suggests the hierarchy of disability and how we must work to build support and acceptance for all persons regardless of (dis) ability. Now not living in the US, and completely understanding that funding is presently coming from Medicaid, how can we call attention to inclusion issues and specifically education – that this is not a medicaid issue. Education is a right for all people. My concern here in Canada, and this was cited in Moore Vs. British Columbia (2012), that the notion of remediation before the right to be mainstreamed risks adverse effect discrimination. I would be interested in discussing with you strategies that discuss this issue and how the public might only view autism as in need of services under Medicaid (which presumably means remediation before the right to be educated). Can you offer your input and can we work together?

Considering the empiricist history of creating normate culture, and an education system that supports that culture, Medicaid does not is the only issue we have facing us. Services need to be multifarious to answer a variety of needs for a diverse and complex autistic population. Looking at inclusion in a variety of ways, attitudes, changing the way we do autism research, participation by autistic people who will help reduce stigma and discrimination and policy and legal levels for all autistic people, and mostly inclusion in programs, education and a deep look into the types of accommodations that autistic people need are among some of the very urgent topics that require dialogue. We need to work together to look at every aspect of the way autistic people are currently treated in society to move forward, and acknowledge that a medical approach to autism will never be panacea. While Medicaid is a system in place to help in some areas, such as habilitative services, and autistic people have the right to access these services as much as anyone else, we do have a lingering and problematic issue of medicalizing every aspect of human existence and now, framing everything under the persistent mental health (or illness) umbrella. When does acceptance of human difference begin and when does pathologization stop? What is an illness and what is not an illness? The way we measure physical properties and the way we observe autistic people for “maladaptive behaviour” are different disciplines, the latter being subjective. And so, we have ever-changing humanly-made, observed definitions of what autism is supposed to be.

I have been thinking of cognitive prosthetics a lot lately and our penchant for (perfect) ability, and how utterly disabling our quest for perfection has become (think performance enhancement drugs, cosmetic surgery, technology and so forth). And now I speculate – once we all want to put a chip in our own brains because we admire autistic strengths, or to be more specific, implant ourselves to obtain these “magnified abilities,” as neuroscientists sometimes call them, then what aspects of our brain today (that we consider “natural” and morally more correct) might be disabled in order to make room for these “enhanced abilities?” After all, as theory presently dictates in binary terms, autistic people have strengths because of their disabilities. So, as we admire the abilities and are connected with technologies to achieve them, it’s only a matter of time that other aspects of our brains will become “dis”functioned. Now let us ask again, what is a disability? Let us continue to work to include everyone and to end the exclusion of human difference.

Reflections on the Acceptance of Disability in Society

Filed Under (Acceptance, Autism History, Autistic Self Advocacy, Critical Disability Studies, Disability History, DSM V, Ethics, Inclusion, Research) by Estee on 06-10-2012

Is there a place for the disabled in society?

The purpose of the title is from historical readings that the disabled in history were displaced and living on the margins of society. Who were considered/are considered valued members of society? Socities have been obsessed with placing the disabled into a variety of contexts that justifies human existence, or fears (demons, monsters, mad, deviants) making the normal the privileged members. Without a comparative measure, as it were, what would we humans deem ourselves to be?

I have a series of questions that I’ll be considering (probably for a lifetime). Feel free to try and contribute thoughts in the comment box.

Pro/claiming Autistic Identity:

Is claiming biological identify leading to another possible eugenics movement? Is there a danger to biological self-identification? How important are self-identification and self-advocacy and pride-movements?

Are pride movements perpetuating the dis/abled dichotomies that already oppress? Do you think they have a positive purpose? Should there be a point at which we stop advancing pride movements, in other words, move beyond them? When is a good time to do so?

How important is the label autism to accommodation if autism is a social construct? (It is). Where “special” and enforcing “inclusion” have already proved challenging, maybe even impossible thus far, is it so because we continue to place the disabled out of the confines of the norm. In other words, are we continuing to perpetuate a false dichotomy that does little to value and serve, but more to segregate and isolate? By wanting inclusion, we are saying we are excluded? Does this stance further the goal itself, or not any longer?

Who Gets To Produce Knowledge About Autism?

The DSMV, behavioural analysis and observation, and the categorization of people.

Who gets to diagnose whom? Who gets to produce knowledge and categories about autism? In the past, and to a large extent today, it is non-autistic or “normal” people and we now witness a gradual inclusion of disabled “voices” to this mix. Do disabled individuals appropriate notions of impairment and abnormality enforced by long-held categories made originally by people who have not had disabilities? After all, autistic people are still largely tokenized minorities among autism charities, autism committees, and as participants in autism research studies.

Accommodation and Acceptance:

To what extent is the citing of needs/impairments an important part (or not) of acknowledging that we are all part of the abled-disabled continuum, which herein, I have already parsed?

Do you think the term autism and/or disability will exist one hundred years from now? Or are we a society that simply wears the same dress, just in different colours?

Have we learned anything from autistic self-advocates that assist us to simply accept autistic individuals and value the right of all people to exist, be educated, and be valued, no matter what level of disability, in society?

Utopias and ideals have perpetuated individual and societal notions about what we should be – what we are versus what we aspire to be. To what extent may this continue to be a driving force (as in survivial of the fittest) under an capitalist/economic lens, and where are we now with this “force” in viewing the disabled as part of this? As disability has always been a part of human existence, despite eugenics movement’s attempts at normalizing society and eradicating “deviant” people from the norms, how far have we come to accepting, embracing and valuing human difference? After all, while the eugenicists caused great harm to many people, and have continued to do so as a legacy, they didn’t succeed in eradicating human difference.*

Reference:

*In reference to the eugenics movement from Davis, “Constructing Normalcy” in Enforcing Normalcy: Disability Deafness and the Body, pp. 23-49, 1995:

“The conflation of disability with depravity itself expressed itself in the formulation ‘defective class.’ As the president of the University of Wisconsin declared after World War One, ‘we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation.’ At it must be reiterated that the eugenics movement was not stocked with eccentrics…Rockefeller, Churchill, Roosevelt, H.G. Wells, John Maynard Keynes”…among a longer list. Some food for thought when thinking about such questions.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.