Susan's Blog

Sunday, May 19, 2013

Disability, Disorder, Disease — Or Difference?

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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“It is more fun to talk with someone who doesn’t use long, difficult words but rather short, easy words like “What about lunch?”
? A.A. Milne, Winnie-the-Pooh

Hi Susan, thanks for sharing and being so wise. My dear aunt and uncle joined me and my 24 year old daughter for lunch today. She is a lot like your son, in her own very unique way. She is learning to email on her iPad and wrote to invite my aunt and uncle for lunch a few weeks ago. Today was the day. She sat and wrote out names on her paper placemat as we talked. She said very little, but she was so calm. We Feasted on fried clams and french fries and talked about old times and our relatives. She didn’t join in the conversation, but she was so calm and happy.
Sweet day. Recently, someone wrote. “Being there is empathy, getting there is love” on her blog (author ??) Today was being there and getting there all at the same time. So sweet.

— added by Mary Ellen on Sunday, May 19, 2013 at 8:14 pm

Sorry, Susan! It’s been way too long since I last commented.

I think Peter Bell from Autism Speaks put it well whe he said that autism is all of them: disability, disorder, disease, and difference. It just depends on one’s viewpoint. None are less, or more, valid than the other. Nor is the source of the language or idea. Whether used by an advocate or self-advocate, professional or the public, no one has a monopoly or veto rights on language if it’s used respectfully and accurately or policy if it helps people lead happy, meaningful, and personally fulfiling lives, irrespective of what others may think about their choices. We need choices and options, not an artificially limited approved menu subject to ideological litmus testing.

Of course, language and policy can and should evolve to reflect improved accuracy and understanding but, personally, I think in some cases both have been bludgenoed into a gooey heap and rendered useless and even counterproductive by out of touch disability policy folks in advocacy organizations, academia, and government.

Personally, I like to remain open and unoffended by whatever terminology is used or policy promoted, even those that may be currently out of fashion, as long as they come from good hearts and are grounded in good intention.

That said, I remain quite ready to fight bad and support good policy when I see it!

— added by Dadvocate on Monday, June 17, 2013 at 3:03 pm

Hi Susan. Fantastic post and wonderful topic for conversation. I like that you published this right around the same time I started to have this discussion with those who would listen. “Different” isn’t a disorder, and to call it so, one would have to have a yardstick by which to measure the difference. But, whose yardstick do we use? Yours or mine? That of society in general? And then, as you implied in your post, where would the definition for “normal” start? While I agree that at times out children’s autism might seem like a disability TO US, I feel that they rarely see it from that angle.

This is similar to the paraphrase, “…if one judges a fish by its ability to climb a tree, the fish will live it’s whole life believing that it is stupid.” Maybe not.

Anyhow, wonderful post and glad I found your site.

— added by Jon Gilbert on Thursday, July 25, 2013 at 4:53 pm