Asperger's Diary

Life through the lens of Asperger's Syndrome.

Views of Disability: Seeing the World through Another's Eyes

Sometimes disability isn't in the person, it's in the situation.

Dark Door
I was still catching up with my own thoughts when my stepmother and I left the car and knocked on the door. The door opened, and in the dark interior, I saw the outline of a person. My stepmother greeted her friend, introduced me, and he invited us to enter. We were ushered into the dark entryway, as our host reached to flip on a light.

We followed him into the house. As she visited every week, my stepmother seemed accustomed to the dim light, but I wasn't doing so well. As we made our way through the house, I found myself once again rethinking some of my perceptions. Like many Americans, I had always thought of disability in terms of deficits...a mindset that's come to be called the medical model of disability.

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For me, disability was measured against the yardstick of "normalcy," whatever that might be perceived to be. If "normal" meant being able to hear sounds within a certain decibel range, to be able to see light and color, or walk upright on two feet, then failure to meet any of these standards meant being "disabled." The only way to remove disability was to remove the perceived deficit. 

Yet, suddenly, it wasn't so simple.

Contrasting my own struggling with the ease with which our host navigated in the dark house, I was struck by a startling epiphany: In a world designed solely for the blind, sight is not only superfluous, it is a disability. This realization opened a whole new world—one I came to know as the social model of disability. It was a world in which disability was a multi-faceted thing, an interaction between the environment, and the abilities of the individual. It was a world where my previous perceptions of the world meant nothing, and diversity meant everything.

I hadn't realized, until that moment, to what extent that the ideas of privilege and disability were intertwined in my beliefs and assumptions. I didn't think twice when people framed things in terms of pity: "Those poor people. How terrible it must be to live like that!" Of course, you can't pity someone whom you feel to be an equal. Such an attitude contains an implicit "us versus them" assumption: That the speaker is "normal, and that "normal" means "better."  

But this little lesson in empathy made the equality between us clear...there was nothing superior in how I was coping in this environment that my hosts called home. In this world, they were the "normal" ones, and I was the person with the disability. In the right environment, and under the right conditions, anyone could be disabled. Including me.

When we reached the living room, my stepmother introduced me to the second half of this couple, a wonderful and caring woman who greeted me as so many others of my parents' friends and relatives had over the years. We talked for awhile as a group before we split off into two groups. My stepmother sat talking with the wife, while the husband took me along as he went about his daily chores.

Perhaps sensing my curiosity, he talked to me a lot about his daily life and challenges. Like many, my thoughts about disabilities like blindness had always stopped at the "can'ts"...I didn't think about the ability on the other end of them. Adaptation wasn't something that came to mind.

But, as he worked, I began to see the many ways that the "can'ts" weren't really "can'ts" at all. He did all the same things that I and my family did, just differently. He was patient with my questions.  When I asked him about making change, he opened his wallet to show me the origami-like shapes formed by the bills inside. 

Example of folding currency to descriminate denominations by touch
Coins he could tell by feeling the size and shape, he told me, but bills were different. They were all the same size— so he folded them in such a way that he could feel the difference. He did much the same with clothing, so that he could differentiate the colors from one another.  

The more and more he explained to me, the more I realized the ignorance of my previous assumptions. I've never looked at the world in the same way. What I learned shapes my perceptions to this day. 

The strongest lesson I took away from this experience is a crucial one: Never underestimate the many and ingenious ways human beings adapt to challenges. Necessity truly is the mother of invention. Allowing our thought processes to stop at "can'ts" places limits the lives of those with disabilities far beyond what the actual "deficits" actually do. I have learned to approach disability from the standpoint not of "cans" but of "hows." I ask not whether someone "can" do something, but "how" they can do it.

When I revisit my own life through this lens, I find countless examples. The many ways I discovered ways to cope with the "can'ts" of my condition that sometimes surprise even me. The form, manner, and even timing of adaptation is sometimes hard to predict—until it happens.

Continued in the next post. For part one of this series, click here.

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RESOURCES

  • Small Adaptations
    "People are constantly making small changes and adaptations to their lives every day. For some people, those changes are more substantial than others. Regardless of how we adapt, we are all equal in what we can achieve; having a disability is never a reason to give up."


  • Disabled World: Definitions of The Models of Disability
    "Glossary list of definitions and explanations of the Models of Disability in society today."
  • The Open University: Models of Disability
    "Models of disability provide a framework for understanding the way in which people with impairments experience disability. They also provide a reference for society as laws, regulations and structures are developed that impact on the lives of disabled people. There are two main models that have influenced modern thinking about disability: the medical model and the social model."
  • Grant Carson: The Social Model of Disability
    "The social model was created by disabled people themselves...The denial of opportunities, the restriction of choice and self-determination and the lack of control over the support systems in their lives led them to question the assumptions underlying the traditional dominance of the medical model."
  • Monica Guy: Discovering the Social Model of Disability
    "Working as a caregiver for Stephen Hawking, right after university, opened my eyes to the challenges that society puts in the way of people with disabilities."
  • Rachel Cohen-Rottenburg: Embracing the Social Model of Disability
    "I've come to realize that while I sometimes experience myself as living worlds apart from non-autistic people, this feeling is not a function of my autism. I am not actually worlds apart from anyone because I am autistic. I feel worlds apart because the world in which I live is not yet inclusive enough to take my particular set of strengths and sensitivities into account."
  • Taking A Disability-Led Perspective
    "In this article I will bring together a few different disabled voices from the existing literature, to challenge some of the assumptions about what disabled people ‘are like', what they ‘need' and to show some of the ways in which disabled writers are arguing for changes in attitudes and approaches."
  • The Importance Of Taking Notice
    "Disabled and deaf people are, of course, just part of the incredibly diverse range of ‘ordinary people'—all of us just trying to get on with our lives, attempting to make sense of, and survive in the world in a myriad different ways."

Lynne Soraya is the nom de plume for a writer with Asperger's Syndrome.

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