Disability and Perception

Posted by Allen Rucker in Life After Paralysis on January 22, 2021 # Lifestyle

In an interview last year, David Shore, the Executive Producer of the ABC medical drama, “The Good Doctor,” a show known for its many stories about disabled patients, had this to say about working with disabled actors and writers. “You meet someone with a disability, you see the disability; you spend a few hours with a person with a disability, you see the person.”group of people

I saw this statement as a perfectly apt comment on how the non-disabled see the disabled. After extended contact, the disability recedes to the back of the mind, where, at least in my thinking, it should reside. I have encountered other disabled folks who see this comment as an affront. They are not ashamed of or uncomfortable with their disability. It’s part of who they are. They don’t want it to recede in other people’s minds. They want it to be acknowledged, accepted, even celebrated. They identify with their disability in the same way many ethnic people identify with their race or culture. It is the prism through which they see the world and the world sees them.

Is this just an argument over semantics? I don’t think so. It is a difference, perhaps a radical difference, in self-perception. I was not born with a disability. It entered my life at age 51, long after I had a career as a writer, a wife of 29 years, and two children. My career and our finances were a bit shaky at that point, even before I became paralyzed. In the end, ironically, the paralysis helped me address these problems. It forced me to take stock and change. I moved away from writing television, which no longer had a place for me, and began writing books and essays, which did. With our finances, we downsized and stabilized, like anyone would who became seriously impaired at mid-life. I struggled with being paralyzed for many years, for sure, but then came to generally accept it as part of my life. Not totally accept it, mind you, but make peace with it, like Great Britain and Northern Ireland.

But I never totally identified with it. I always saw it as something that happened to me, not something I was. I do feel a genuine kinship with others in the disability community, especially those disabled professionals in Hollywood who are largely shut out. After a short period where I was embarrassed to be seen in a wheelchair and shunned others who were, I woke up to the benefits of membership – our common plight, our common need for support and allyship, even our common sense of darkly-tinged humor. Advocating for disability inclusion and acceptance in mainstream film and TV has been a huge chunk of my life’s work for the last fifteen years. I love the people and together, we have definitely moved the ball a few yards down the field.

At a luncheon some time back, I was sitting next to a very accomplished woman who was physically disabled from birth and had spent her life in a power chair. A speaker on stage was celebrating the work of this very foundation to find ways if not to “cure” paralysis, to at least mitigate its most damaging consequences. I said something to the effect that I would give my eye teeth to walk again and she lit into me like I was mocking her very existence. “I like the way I am,” she said (I’m paraphrasing), “I think the idea of “fixing” me is simply a way of saying “I’m a lesser human being” or “I should be pitied for being so broken.”

I just shut up at that point because I knew she deeply and profoundly identified with her condition – there was no breathing space between her disability and her sense of self. I certainly didn’t mean to offend her, any more than David Shore meant any offense when he observed that he stopped focusing on someone’s disability after getting to know them. I too, stop focusing on a person’s disability after befriending them and it has absolutely nothing to do with ignoring or dismissing or sugar-coating their condition. If they want to talk about it, fine. I have a disability, too. I am also getting on in years and seem to want to talk about that, probably too much. That I do see as part of my identity.

There is no right or wrong here, but I think it is an important difference in self-perception among disabled people. And I think the onus falls on people like me -- those who see their disability as a misfortune and not an article of selfhood -- to acknowledge and respect the other point of view. If I were born with a disability, I would probably feel the same way. It would probably be part of my everyday DNA.

Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.