Mom, Am I Disabled? Return to the Question

Sam is writing a term paper on Temple Grandin’s contributions to American society. She has read interviews and a biography, watched podcasts and the biopic with Claire Danes, reviewed some of Grandin’s slaughterhouse designs, and grappled with her own interests, talents, challenges, emotions, and even voice:

"Does my voice sound like [Grandin’s]" Sam wonders.

"Yes, pretty much," I answer brightly.

"Oh," she stutters, looking crestfallen. "I always thought my voice sounded mellifluous, like Julie Andrews before her surgery in 1997. Whenever I hear my voice it doesn’t sound like what I think it sounds like."

"Julie Andrews probably doesn’t think her voice is mellifluous when she hears it either," I reassure her. "Nobody hears themselves the way they sound to other people."

"But Temple Grandin’s voice doesn’t sound mellifluous at all. Is that how I sound?" she challenges me.

Hemming and hawing, I reply "Yes, sort of, but maybe not so much. You have a beautiful voice."

"But I talk too loud?"

"Sometimes, yes."

 

We move on, until:

"Mom, don’t you write a blog called 'Mom, am I disabled?'"

(Deep breath) "I do. I think you were looking at your IEP and the section where a disability is checked off when you asked me. Do you remember what I said?"

"No, not really."

"Well, what do you think? Do you think you’re disabled?"

(Long pause to think) "Yes. I think I am disabled. I’m autistic and that’s a disability. It means I have a lot of gifts, but it also means I’m disabled because there are things I can’t do very well."

"I think for me I know you have a disability, but I don’t think of you as disabled. I think of disabled more like a broken computer."

"I’m not disabled like someone who doesn’t have use of their legs."

"A lot of people who don’t have use of their legs don’t think of themselves as disabled at all."

"But they are disabled at the Clybourn train stop, because there’s not elevator at that stop. But like at the ­­­Fullerton stop they’re not disabled. That stop is wheelchair accessible."

(Moving into dangerous territory) "What about Tom, Dick and Harry?* They’re all autistic. Do you think they’re disabled?"

"I think Tom and Dick aren’t disabled. They’re like me. They can stay home alone. So I guess I’m not disabled either. But Harry can’t stay home alone. Someone has to be with him all the time. I think that’s the difference—if you have to have someone with you all the time."

Sam’s thinking about disability is obviously not too coherent at this point, and it certainly is not couched carefully in language designed to provoke without offending. Ingenuous best describes it for me. But she does touch on some of the most salient issues in the disability studies conversation. How much of disability is socially determined? If the same person can be disabled in one location but not in another a mile away, is “disabled” a transient status? In this situation, choices about which accommodations to support (financially and judgmentally) become decisions about who is disabled—at least according to Sam's reasoning.

Then comes her definition of disabled as needing to have someone with you. I did not push her on this, but I imagine that, had I pointed out that all children need constant supervision, she might have amended her statement with “into adulthood.”

As I’ve written before, I reject the idea, promoted by many in the disability rights community, that disability is always and only a social construct. Some people whom I know live with physical or cognitive impairments that are severely limiting. I lack the imagination to envision a world in which adequate-enough supports could exist to obviate the label disabled. Insisting they are not disabled, I think, is a disservice to their parents and willful ignorance toward their level of need.

But what exactly constitutes “being disabled” is still a mystery to me. I used to think it was like hard-core pornography according to Supreme Court Justice Potter Stewart: “I shall not today attempt further to define [it] . . . but I know it when I see it.” For me the subset of people whom I identify as disabled continues to shrink, and I no longer expect the concept’s parameters do remain constant for me. Do I know it when I see it? Is Stephen Hawking disabled?

Even though Sam is the one who asked the question so many years ago, she is far less invested in the answer than am I. Along with Temple Grandin, she sees herself as “different, not less,” and she’s more interested in her art and her cats than her label. I am interested, because I understand that opportunity is often restricted or expanded depending on people’s beliefs about ones capabilities. For me, that’s the end-game of the discussion. I want her non-mellifluous voice to be a non-barrier to people recognizing her capabilities.

We’ve had some great conversations, but the term paper is now three days overdue and still incomplete. My anxiety, unlike Sam’s, grows exponentially by the hour. True confession: part of me secretly wishes the teachers would go ahead and strike, as they’re threatening, so we could finish this paper at a more leisurely pace . . . or not have to finish it at all! What a Mother’s Day gift that would be, I think to myself, smiling at the fantasy. Better than a glass of wine and a warm bath. What kind of parent wishes such a thing—to deprive her own child of a solid education? If you’re reading this, you probably know the answer.