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

By Paula C. Durbin-Westby; originally posted on the Paula C. Durbin-Westby Autistic Advocacy Blog.

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.

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