Tuesday, October 15, 2013

Why I’m still disabled, even though I’m brilliant (or so people tell me)

by Chavisory

There’s a dynamic that occurs a lot in conversation, mostly with family, when I have to try to explain why I can’t just go do some given thing…a thing that I might or might not want to do, a thing that might make me more money, a thing that might be advantageous to my career or quality of life…because I have a communication disability.

In these conversations, people say, really often, something along the lines of “But you’re brilliant—you could do anything you wanted to!”

Here’s the thing:  being brilliant and being disabled are not mutually exclusive.  You can be intelligent, and still disabled, as well as disabled, and still intelligent.  Here’s why.

1.  My brain works really differently from most people’s.  That doesn’t change no matter how smart I am.

No matter how smart I am, my hearing works differently than yours does.

No matter how smart I am, the way I process speech and language is totally different from yours, and so speech processing is hard.  (Unless I’m talking to someone whose speech patterns are very similar to mine.)

No matter how smart I am, I have to translate all incoming verbal information into the non-verbal information that I can understand, and translate it all back in order to have a conversation or discussion.

Being smart in certain ways means that I can do that fairly quickly and accurately.  Being disabled means I still have to do it.

No matter how smart I am, it is physically difficult to carry out some of what most people consider basic interpersonal activities, and it’s near physically impossible to do that at the same time as actually thinking or absorbing information.

No matter how brilliant I am, sensory overload can paralyze my ability to think or speak.

Being smart means that I can usually identify the patterns of exactly how and why things don’t work for me the way they work for other people.

Being disabled means that I can’t just work the way other people expect me to, no matter how much they expect it.

2. Yes, I’m smart enough to come up with workarounds.  But they have costs.

Being smart means that I can usually figure out for myself how to do the things that I was never taught to do, that I can usually come up with a workaround or a cognitive detour for the things that I can’t do the same way everyone else can do them.

Being disabled means that I always have to be doing that.

It means that almost nothing that non-autistic people take for granted being able to do, ever becomes truly natural or easy.  And even if my neurology confers some abilities and benefits (which it does) …non-disabled people still expect that the things that are easy for them, are easy for you, too.

I have an impressive range of adaptability…but not an infinite one.

I have to constantly be doing calculations about whether, in any given situation, I will be able to communicate what I need to quickly and clearly enough to accomplish what I need to.  Whether that’s coordinating the activities of an entire production team, or ordering a cup of coffee.  (Depending on the variables involved…sometimes ordering coffee is harder.)

And exercising that flexibility, going through those calculations, coming up with those workarounds, and constantly using them, has high energy and cognitive costs.  Even if it means I’m more able to do everyday, expected things, it draws energy from other things that I need and want to be able to give attention to.  It takes attention and cognitive bandwidth away from my natural ways of processing.  That, in turn, causes my natural talents and abilities to suffer.

Recently I was explaining to a friend how, as a child, I had a near-perfect photographic memory.  It was so good that I didn’t have to “study,” because I could take mental photographs of textbook pages or blackboard illustrations and simply read off of them for tests.  It’s suffered as I’ve gotten older, and what I strongly suspect happened is that, as other things I needed to be able to do required greater conscious and deliberate real-time processing, my brain simply couldn’t spare the immense “storage” space that that visual memory was taking up anymore.

Ariane said, “So in some ways, as you’ve gotten more able, you’ve actually gotten dumber?”

Yes.

I can deal with a lot of what’s physically and emotionally hard for me, because I’ve purposely developed the tolerance, discipline, and cognitive strategies to, over many years, but it still takes energy and effort to do, that is energy non-autistic people are not spending on the same things.

3.  There are externally imposed barriers and obstacles that have nothing whatsoever to do with my intelligence, or my work ethic.

There are expectations of other people that don’t line up with what I can and can’t actually do, that are allowed to supersede my freedom to actually do what I’m supposedly being asked to do.

There are workplace conditions that physically limit my ability to function.  Fluorescent lights, lack of natural light, rooms that are too acoustically reverberant, with too much random noise, environments that are too chaotic, with too many conflicting expectations or fragmented demands on my attention, requirements that I dress in a way that mean that I can’t function physically (this can be as simple as a requirement that I wear a specific t-shirt with a collar that’s too high or too tight) because they’re so distressing or distracting, supervisors or managers who give constantly ambiguous or vague instructions, demands that I learn in a way that just isn’t how I actually learn.

There are systemic, widespread, pervasive, financial, bureaucratic, economic, and geographic barriers to things that I can’t individually make disappear, no matter how smart I am. 

High SAT scores aren’t exchangeable for systemic fairness and accessibility.

Being very good at trigonometry, shockingly, does not make clothes shopping or getting through airport security lines easy—because those things impose totally different demands on my abilities, that have nothing to do with my IQ.

There is prejudice, bigotry, and discrimination against the disabled, and it has real, concrete consequences for how people are treated, even when your disability is invisible.  Sometimes especially when your disability is invisible, because the people with those attitudes think that their prejudices don’t really apply to or impact you.  Those attitudes have consequences for whether you can get what you need, when other people have some kind of control over your environment, to do what you can actually do.

4.  There’s a lot more to human ability than intelligence.

There’s innate talent—which still requires time, work, and resources to nurture and develop.  There’s natural interest, passion, curiosity, motivation, personal priorities, and intuition (which I think may actually be the most important).  There are many different kinds of intelligence—I don’t even think that Howard Gardner’s multiple intelligences theory really captures them all—and they aren’t interchangeable with each other.

This is true even for non-disabled people; why wouldn’t it be true of disabled people?  I mean, why don’t you just go be a rocket scientist, neurologist, cinematographer, or run for public office?  You’re non-disabled, after all—you should be able to do anything you want, right?

Of course not; it’s far more complicated than that, in ways you probably can’t even explain.  Why would it be less complicated than that for disabled people?

Being disabled doesn’t mean that I can’t do anything real or worthwhile or maybe even profitable (one of these days).  It means that some things, that most people take for granted, are harder or impossible for me.  And I have to take those things into account and think realistically about how they impact me, in order to figure out what I can do well, and sustainably.


I think that’s its own kind of intelligence.

12 comments:

  1. An analogy I saw someone use once: When you watch a duck or a swan glide across the surface of a lake, it looks effortless. But what we cannot see is that, right beneath the surface of the water, the duck or swan is working their butt off paddling their feet. Just because you don't see the effort doesn't mean it isn't there. But a lot of people forget that.

    As a deaf person, people tell me that I'm good at lipreading. And sometimes I really am. But sometimes I'm faking it and they may not realize. Or even if I'm not faking it, I'm still working my butt off to understand anything that others say. And that does take energy away from other things, like focusing on the *content* of what people say. Which may not matter much if someone is just asking, "Do you want diet or regular coke?" but matters more if it is, say, a doctor giving me important but complicated medical information about my body. I can do without a sign language interpreter in one context but not the other. And sometimes some people have trouble grasping why it should make a difference what the context is or what the topic of conversation is on whether I need an interpreter.

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    1. I love the duck paddling metaphor.

      I also think of...have you ever seen photos of a professional ballerina's feet without toe shoes on? They look battered. They take all the force of what goes into making a performance look graceful on the surface.

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  2. Thank you so freaking much for this. I get this a lot - I'm very bright in terms of IQ/intelligence, and my family doesn't grasp sometimes why I just cannot do something; by their logic, it should be easy because "I'm so smart." This explains it way better than I've been doing it lately.

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  3. I have a Ph.D. But I would not have been able to even READ this if there had been a ceiling fan or artificially-scented candle nearby.

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  4. Thank you for putting this so much more eloquently and concisely than Id ever be capable of doing.

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  5. Newly diagnosed Autistic, and have physical disabilities and chronic illnesses. Any one of them can change my calculation of what I can or cannot do on a dime. Thanks.

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  6. I am a newly diagnosed Autistic (as a child could speak to adults, my cousins, one or two friends, and a few of the high-IQ students when they were talking about intellectual interests or my hobbies). I also have physical disabilities (I walk with canes or use a wheelchair) and a list of chronic illnesses. I have to calculate every day, multiple times a day, what I can do based on each one and the list of "must dos" (my paraplegic mother with dementia obviously must have her needs met no matter what and can cause chaos on a dime). And Dad still wonders why every event is a "maybe" until very close to when it happens. He needs a set plan. Every outing put on the calendar well before. That is his way of making sense out of things. I have more limitations. I can't do it.

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  7. Perfect. May I use this, citing you as source and giving full credit with links and references? I can't say it any better.

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  8. I experienced similar things. I always said that learning how social interaction works made me dumber (a lot). That being said, it made my life a lot better so I take the bad with the good. It will never be natural and feels like a extra module in my head that I need to run manually. Other people can't understand how that feels but I think you can. Thank you for writing this.

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  9. I experienced similar things. I always said that learning how social interaction works made me dumber (a lot). That being said, it made my life a lot better so I take the bad with the good. It will never be natural and feels like a extra module in my head that I need to run manually. Other people can't understand how that feels but I think you can. Thank you for writing this.

    ReplyDelete