When Is a Disability Not a Disability? Autism Speaks Has the Answer

When is a disability not a disability?  When it is a “disorder.”  Geri Dawson of Autism Speaks made that clear yesterday in her report out from the Research and Innovation session at the White House autism event.  She noted that her session had featured a lively conversation about the terms “disability” and “disorder,” and then weighed in on the side of “disorder.”  She said that autism is a disorder, and went on to state that unless we think of autism as a disorder we will never think of it as a disability.  Although that does not seem to make any sense at all, it’s actually quite astute.  It’s not just “doublespeak,” either.   It is critical to understand why it’s important to Dawson and Autism Speaks (and to those researchers who want to prevent autism).  Dawson did bring up prevention more than once in her remarks.

Why quibble about two words, both of which begin with “D”?

When a person has a disability that person is still a person. That person with a disability has a body, and a mind.  That person with a disability has needs, concerns, desires, a personal history, a context of family, friends, and community relations.  A person who has a disability has all the legal and civil rights of personhood (or should).  That person has (or should have) the right to make decisions (sometimes with assistance, sometimes not) about what they want for their life, including, at least during adulthood, the right to accept or refuse treatments, make choices about where to go and who to spend time with, and when.  That person with a disability has the right to be treated with respect, to have their deepest dreams and desires taken seriously, even when the person has what is often called a “more severe disability.”  There are documents such as the Developmental Disabilities Act (the DD Act) that presume that a person with a developmental disability has the right to self-determination, inclusion in the community, the right to care and treatment that maximizes the potential of that person with a disability.  The DD Act specifies that no person with a disability can be subject to a greater risk of harm than to any other person in the general population.  The DD Act offers protections via the Protection and Advocacy (P&A) system.  Various other pieces of disability legislation protect people with disabilities.  Legislation also protects, or attempts to protect, children with disabilities. Although they have fewer choices in terms of what treatments and interventions they might want to accept or not accept, children with disabilities are protected by law.

A disorder is not a person.  A disorder is a collection of “symptoms” or “undesirable” conditions or traits.  A disorder doesn’t have a body.  A disorder doesn’t have a mind of its own.  A disorder can’t be a child, perhaps a child in need of protection.  As such, a disorder does not have any rights under the DD Act or any other act.  Only people do.  A disorder can be “combatted,” “cured,” “prevented,” and “eradicated” in any manner that researchers and others see fit.  Autism Speaks has a habit of depersonalizing autism (remember the infamous “I… Am… Autism…” video with the creepy disembodied voice?) in order to justify eradication and prevention.

There is one problem with all this, and is the reason I think Geri Dawson’s comments are concerning and also very telling of Autism Speaks’ continued focus in eradicating autism.  Those disembodied disorders?  They are actually part and parcel of people, people with bodies, with brains and minds, people with disabilities. Every “cure,” “treatment,” and other intervention is not actually carried out against a disorder. It is carried out on and sometimes in, the bodies of real people, including children.  Disability is embodied.  It cannot be separated from the person who has it.  Every attempt to eradicate a disorder has to be balanced against the fact that the disorder is carried within a person.  Not so disembodied after all, creepy voices or tragic rhetoric notwithstanding.

Dawson made her comments during the report-out from each of the four breakout session groups.  In the Education and Employment group which I attended, we had a productive and encouraging meeting, with much thoughtful and sensitive input from advocates and self-advocates.  I heard similar comments from participants in the other sessions on Community-Based Services and Public Health and Healthcare.  People were putting their heads together- exploring creative solutions, collaborating, with Administration officials asking thoughtful questions and being responsive.

When Dawson got up to speak, the effect was a big let-down.  Here we were all moving ahead, getting ideas, making plans.  The “disorder” comment was like a return to the past, a past where the only option was “cure the disorder so that society won’t be burdened with these people.”  Dawson’s pronouncement was the only really discordant and almost irrelevant note in the proceedings, most of which seemed to be focused on the things that really matter – services, supports, creating more infrastructure for those services and supports, meeting people’s needs in terms of education, health care, employment.  I am hoping that Administration officials, at least in some departments, will move ahead with forward-thinking programs and initiatives that will really help people on the autism spectrum, our families, friends, and communities.  I hope less focus will be put on finding causes and cures and more on helping people to live to their fullest potential.

Thank you to the Obama Administration for hosting the event and to the Administration officials who listened and asked provocative and important questions.

Paula C. Durbin-Westby blogs at the eponymous Autistic Advocacy Blog.

When Is a Disability Not a Disability? Autism Speaks Has the Answer appears here with her permission.

[image via Flickr/Creative Commons; click on image for explanation]


on 04/29/11 in featured, Language | 12 Comments | Read More



Comments (12)

 

  1. rosabw says:

    That’s di$order, to you, ma’am.

    My cynicism knows no bounds…but is a di$order more lucrative than a disability? There are enough who will profit from di$abilities at the expense of the disabled. Di$order means science and industry can get involved.

  2. DUSYA LYUBOVSKAYA says:

    Did Gerrie Dawson actually listen to herself throughout her presentation ???? Because there is NO commonsense :o !!!! …. DUSYA ….

  3. Rochelle says:

    I believe she’s confusing the word ‘disability’ with ‘handicap’. One can have a ‘disability’ and not be handicapped by it. Calling it a disorder makes it no less a disability.

  4. Mark Stairwalt says:

    I think Paula makes clear that an emphasis on the word disorder is astute rather than logical. It may be offered as an appeal to logic, but its astuteness lies in the appeal to our lesser angels. The use of “disorder” in the manner Paula describes serves to provide permission for and excuse the dehumanization and objectification of other human beings. To steal a phrase from Kyriolexy, this is what propaganda looks like.

    A correspondent who has studied fascist propaganda once wrote to me, “The very act of trying to make logical sense out of a constantly shifting and illogical structure is so exhausting that people give up trying to understand it at all. Once they’ve given up, they just throw up their hands and say, ‘Whatever,’ and the message of the speaker enters the vacuum where critical thought ought to be. After that, things get very dangerous.”

    Whenever I see folks wrestling with “logic” like this as logic, trying (however cynically or dismissively) to find its missing sense, I think of Brer Rabbit nestled safely deep in the briar patch, his voice still hanging in the air, “Whatever you do, please don’t throw me into the briar patch!”

  5. codeman38 says:

    Dawson’s quote seems flat-out backwards to me as someone who thinks of disability from a social-model perspective. Something can be very much disabling without being a disorder at all.

  6. Rachel says:

    Paula, thanks for all the great work you do in the trenches. It does my heart good to hear of you working with other sensible folks who want help people live safer and happier lives.

  7. Dr. Linda says:

    Sad. She should know better.

    And, IMHO, what’s really at stake are DIFFERENCES that ONLY BECOME DISABLING when misunderstood, denied, not tolerated, unwelcome, unaccommodated, unsupported, and _____ (fill in your own term[s] related to stereotyping, prejudice, discrimination, and anything else that results in dehumanization, ostracism, and someone else feeling a need to eradicate EITHER the difference OR the person with it or suspected of having it).

  8. Phil Schwarz says:

    You hit the nail on the head, Paula.
    Once again, we have in Geri Dawson’s remarks a failure to understand the fundamental *duality* of autism: it is not simply (a dehumanizing) “disorder”, but rather it is simultaneously (very human) *disability* and *difference*. The resolution to all the heated adversarial public discourse and false dichotomies surrounding autism is to recognize that duality — to work to mitigate and accommodate the disability, and simultaneously to respect and protect the differences.
    Kudos to the White House for organizing the event, but I think there is a much better Dawson in the autism field that they could have invited, rather than the one they did.

  9. cjdiachenko says:

    Go Paula Go Paula!!! :D Speak! :D

  10. I do not think scientist though she claims to be, that Geri Dawson has much understanding of language at all. It takes a person who is impaired in conventional language to really deconstruct and see the absurdities and logical gaps in those kind of statements.

    Of course Wittgenstein was just such a neurodiverse person :)

  11. And what makes it even more galling, is never mind the social prominence of people like Geri Dawson and the fact that they probably have higher paper IQ’s than I do, still they do not understand “the order of things” and would not even know why I put that in quotation marks.

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