Susan Senator

I’ve been spending a lot of time with Nat — not unusual — and everything’s been going pretty well. But there are a lot of moments where I have to sigh and remind myself “this is the disability.” Meaning, he is limited by his autism in certain ways. Meaning he can’t do what I want him to do. But I don’t know if he feels his limitations. If my expectations are too high, is that his fault?

I’m thinking back to our lunch the other day, in a nice restaurant. Apart from our deciding what to eat, we did not really talk to each other. Sure, I told him to put his napkin on his lap and to take my french fries, but there was no conversation. I have to be quiet when I’m with him, and I don’t enjoy that. But again, shouldn’t I tell myself that is how he is, rather than think how sad it is that he is disabled and can’t talk much. When will I be able to make the final jump into seeing him as whole and unbroken?

If that is true, however, then why do we call it a disability, a disorder? How do we define it? Perhaps instead of the connotation of disability being about limitations and something being wrong with you, it should be more about what is really hard for you to do? Maybe disability is about an extreme difficulty with doing certain things that the majority (the non-disabled) take for granted? So I don’t mean my difficulty running three miles because my hip joints are screwed up. I don’t have a disability in the hips. But further along the line of inability to run three miles, one would meet a mobile disability.  Where is that dividing line?

Also, I wonder about disease vs. disability. Once in a while people refer to autism as a disease. I bristle at that. But then how do the people with cancer feel when others say, “thank God it’s not cancer.”

If some parents feel like, “Oh, shit, it’s autism,” is that understandable, or a put-down? Many of the high-functioning autistics and Aspies I know are horribly offended by the “Autism sucks” mentality. That’s because they either don’t see autism as a disability but just a difference, even a positive difference; or it’s because they see autism as a disability and they’ve accepted the fact that there are things they cannot do or understand. They don’t feel sad about it, they don’t feel broken or less-than.

I guess it depends on whether you see disability as a negative or as just another aspect of you. I think we probably have to make room for both — and there are probably even more viewpoints — but then we have to expect friction and factions within the community.

To me, most of the time, it’s not really important anymore what autism is (good or bad or just something). It’s what happens when autism meets the world. Nat being with me can be experienced happy or sad, depending on the circumstances. With his pediatrician, I am over-the-top proud of how much he can do, how much he’s grown. With his new adult primary care physician, I felt awkward about how much he could not do, and wondered how the heck such appointments can happen when the caregiver cannot translate or be a proper liaison?  Or, when I was in the restaurant with Nat, I thought of asking if he needed the men’s room. But I saw that it was one of those with stalls, urinals, etc., and of course the bigger stall for “the disabled.” But what there also needs to be is the single room bathroom, for those who do not understand the subtle bathroom behaviors. For the times when you have a caregiver of one gender and a client of the other.

The world needs to be told again and again what reality is for some. How a little change can make all the difference between able and not able. I guess that’s why my definition of disability shifts: it depends on the circumstances. If the rest of the world accommodates without judgement, without eye-rolling, and without having to go to the Supreme Court, then maybe we’d make some headway in viewing disability as a difference, the way the Self-Accepting Autistics and Aspies do.

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