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Wednesday, November 2, 2011

Showcase: Autistic Hoya's "Disability is a Social Construct"


Disability is a Social Construct: A Sociological Perspective on Autism and Disability by Lydia

(Special Note: Today is Autistics Speaking Day. With the end of midterm examinations and the second annual Autistics Speaking Day, I’ve prepared a special article during a time that might otherwise have been occupied with some intense studying.)


Earlier this year, someone I knew told me about meeting a man who obtained very high levels of education (probably a doctorate) in a technical field and who is reputed as one of the top minds in the entire country in his field. He was sought by some of the most prestigious educational institutions in America. Instead, he chose to work for the government, for one of the agencies in the intelligence community. At forty-something years old, he lives with his mother, who drives him every day to work.

When I told my mother this story, and suggested that he might have been Autistic based on the facts that I know about him, she immediately shook her head and said, “That’s sad. His mother didn’t do the right thing for him. He should be able to live on his own and take care of himself, and take himself to work. That’s not a successful ending.”

“No it’s not,” I responded immediately. “You don’t have to be able to live independently to be happy or a contributing member of society.”

“But what’s going to happen when his mother passes away? Who’s going to take care of him then? He’s not going to have anywhere to go.”

That, to me, is the most significant problem, and it is a societal one.

Disability is a social construct. That may seem like a revolutionary idea, or perhaps the proud declaration of someone who would rather not use an “ugly” or “pejorative” word. But what that means is that the way that we understand disability is ingrained in our society’s attitude toward ability. When most people say or read “disability,” they understand that word to mean a person who is unable to fully participate in typical life activities because of a mental or physical impairment.

Our culture says that to be fully functional and able means that one should be able to attend a mainstream school, complete university or vocational training if desired, obtain housing, obtain and keep a steady job, and marry and support a family if desired -- all without significant outside support or assistance. While it is considered socially acceptable to speak to a college counselor while in high school, see a math tutor for algebra or calculus, and even depend on one’s parents for financial support through young adulthood (twenties or so), an individual is not considered fully able and functional if he or she is unable to do one or more of those activities without significant amounts of support from others.

By this definition, the definition propagated and permeated throughout the societies in which we live, we Autistic people are disabled. Some of us may be more disabled than others -- as some of us are more able to participate in life activities with less amounts of outside support, and others of us do now and will throughout their lives only be able to participate in some of those activities with significant amounts of outside support.

For the other Autistic folk reading this article, please understand that I am not classifying or differentiating “types” or Autistic people. I feel very strongly that you are either Autistic or not Autistic. I do not believe it is possible to make meaningful distinctions between types of Autistic people through terms like “severe” or “mild” or “high-functioning” or “low-functioning.” Those terms are not only demeaning and offensive, but also lack scientific validity. I do not think it is possible to be “mildly” Autistic.

Why is that? Autism is a bio-neurological developmental disability (and there’s that “disability” word again) defined by a certain set of characteristics -- differences in sensory processing, information processing, and communication. Those marked deviations from a typical neurological profile (or, in any case, most non-Autistic people) manifest themselves in a variety of ways -- some fairly positive, some fairly challenging, and others simply -- different. For us Autistics, autism affects and influences every aspect of our lives, throughout our lives. In short -- you either have this particular grouping of characteristics or you do not. You are Autistic or you are not Autistic.

Let me take a moment here to draw an analogy with religion. Of people who identify as religious (and one’s faith, or choice not to align with a particular faith, necessarily impacts all of one’s ideas and beliefs about everything else -- politics, ethics, and otherwise, informing and influencing all aspects of that person’s life), some are immediately recognizable as religious by glancing at them. You might see a man wearing a skullcap and yarmulke, or a woman wearing a hijab headscarf, or a man with a clerical collar -- and you would know immediately that that person is religious. In other cases, you might know a certain person fairly well, speak to him or her quite often, and never think about religion or whether the person is religious -- but that does not change the fact that that person belongs to a particular faith tradition or that that person’s beliefs about religion are an integral part of his or her identity and worldview (regardless of how deeply involved with “traditional” religious activities the individual may be.)

Similarly, some Autistic people may appear at first glance to be Autistic, based on common ideas of what it looks like or means to be Autistic, while others have become skilled, through life-experience or coaching, at “passing” for non-Autistic. Not all Autistic people are interested in Autistic culture (which, quite frankly, I think is tragic -- but a personal decision.) Not all Autistic people choose to identify themselves as Autistic -- and for a myriad of reasons, not least of which is the justified fear of discrimination or misunderstanding. When you live in a world where people think it is a compliment to tell you “But you seem normal,” and where you are under constant pressure to appear as non-Autistic as you can, that creates an environment where it is supremely uncomfortable to disclose that information.

And like people who all belong to the same faith, each Autistic person -- while sharing a common identity -- is an individual. We are not identical, and we each have our own individual strengths and weaknesses. Autistics are a diverse lot. Some of us speak, and some of us do not. Some of us have attended mainstream schools, and some of us have attended schools specifically for special education. Some of us have gone on to university, and some of us have not. Some of us can effectively advocate, and some of us have not yet learned how to advocate. Some of us can live independently, and some of us need intensive supported living services. Some of us have obtained jobs and worked toward careers in a competitive environment, and some of us struggle to find employment. We are not all alike. But we are all Autistic.

But what does this have to do with disability? Why do I use this word? Because it would be inaccurate, within the context of our society, to say that Autistic people are not disabled. It would also be inaccurate, within the context of our society, to say that no Autistic people are more or less disabled than other Autistic people. Within the context of our society, some Autistic people are more disabled than others, because of how we have come to define and understand ability.

I do not like the word disability. I do not think it should be used. I hope that over the coming generations, it will fall into disuse -- or at least, be redefined. If I could redefine “disability,” I would start with our definition of what it means to be fully functional and able. To be fully functional and able -- outside the context of our particular societal attitudes -- should mean possessing the ability to live a life that is meaningful and satisfactory for oneself, by one’s individual feelings, with the appropriate amounts of support where required to live that life. By that definition, almost no one would be disabled. Nearly every Autistic person falls into that definition -- and I only say “nearly” because I try to avoid absolutes. Notice that the definition that I have proposed does not say anything about independent living or activities of daily life. It is only in our society that “independent living” is a hallmark of being fully functional and able. I do not think that “independent living” has any correlation with the ability to live a meaningful life or to make meaningful contributions to society.

But in our society, I use the word disability. In fact, I use it quite often. And why is that? Because if I need to advocate on behalf of Autistics in order for us to receive needed services or supports, or for systemic changes to be made to benefit Autistics, I have to use the word disability to get attention, to be taken seriously, and to effect those changes.

I think this is a tragedy. I think it is a tragedy that while there are parts of the world -- usually rural, “undeveloped” (another word with such nuanced connotations behind it) areas -- where people who need significant amounts of outside support are welcomed and supported by the entire community, and where this is natural and normal, it is abnormal or exceptional in most of the “developed” world, and indeed, in the places where most people live. We look down on people who require significant support from people, especially non-family members. We pity them. Sometimes, we think of them as burdens to society because of the public funding that goes to support them. In these other parts of the world, in these isolated hamlets, these people are equal parts of the community that joyfully supports and encourages them instead of reluctantly giving to charity cases.

That is why I found my mother’s response to the story so problematic. It encapsulates, in only a few fell sentences, the attitude our society has developed toward ability and disability.

I am Autistic. For now, I am disabled.

Today, I am speaking.

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