Illusions of Extreme Differences

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elmindreda replied to my post Sordid, Anyone? with a post of her own, The Difference Slot. I am replying to that post with a post here.

Her one-slot theory of understanding difference — where people only have room to view a person as being different in one way at a time — makes a lot of sense. It explains, among other things, something I keep seeing in people’s reactions to me and my neighbor.

My neighbor and I are both autistic. We are both wheelchair users (for different reasons). We both have ongoing health problems (some same, some different). But according to local agencies, I belong to a broad category known as developmentally disabled, and she belongs to a broad category known as physically disabled.

Yesterday I was having a conversation with someone from the physical-disability agency, which provides a few services to me, and most of my neighbor’s services. My neighbor was there too. Someone remarked that the reason some things were not getting done, was because I was probably the first autistic person the staff had dealt with and they were a little intimidated by this. And that I was the only autistic client of the agency. I said “But wait a minute, my neighbor is autistic.” Although it’s in her file, they hadn’t noticed.

My neighbor, while she gets some of the patronizing crap that all disabled people get, is more often than me considered an autonomous adult. When we do things together, people assume that she comes up with all the ideas and tells me what to do, even though the exchange of ideas is more equal. People also assume that she can do all kinds of things that she can’t do, because they assume that she is entirely physically disabled and not at all cognitively disabled. When she encounters shutdown, people assume she is having a medical crisis and offer to drive her to the hospital.

People also assume that I can do all kinds of things that I can’t do, but they are often very different things. Just as it’s technically in my neighbor’s file that she’s autistic, it’s technically in my file that I’m physically disabled and have ongoing health problems. However, I am frequently expected to perform as if these things do not exist. The ongoing migraine doesn’t seem to exist to a lot of staff unless I talk about it, and when it was at its worst the fact that I was in bed and barely responding to anyone was taken as a big mystery or even a personal affront to staff. Even basic physical environmental adaptations, that were a matter of course for my neighbor, have not been suggested to me by my agency, only by my neighbor. And basic, preventable problems are not planned for because nobody seems to think about them in my case, and when they do think about them, they think mainly about the cognitive, emotional, and social ramifications, not the physical ones.

I am not considered as much of an autonomous adult, and I am not expected to have as much say in what my staff do when they come to my house. My case manager has frequently overridden my judgement and I haven’t found out until a staff person refused to carry out an instruction. It is seen as normal for staff to do things like correct my manners or instruct me on how to spend my free time.

Of course, my agency doesn’t know a lot about autism either, and statistically under-serves autistic people. So the way I am seen is not only in terms of a version of intellectual disability, but a stereotyped and inaccurate version of intellectual disability that would not and does not fit many intellectually disabled people either. This is how, for instance, seemingly on the basis of a few cognitive skills, I have been assigned to a “team” that self-admittedly has no experience with anyone with “as many support needs” as I have, despite the fact that the testing that got me into this agency’s services places me as someone with a whole lot of “support needs” based on my actual capacity to do things.

Meanwhile I have another neighbor who is autistic, but who is in the local psychiatric services agency, and most of what they appear to do is give him drugs and tell him that he only gets to live in his own place if he’s “good”. He wants help making friends, and says that the reason he is depressed is because he does not have friends, but that they just give him drugs for depression and for a few past misdiagnoses. I have a suspicion that his perseverations are treated as paranoid ideation. Big surprise.

But back to me and the first neighbor. She and I consider ourselves to have more in common than different, when it comes to autism. Certainly there are differences in expression, but to me these are largely cosmetic differences in our appearances. The reality is that she is better at doing some things than I am, and I am better at doing some things than she is. This can shift around in both of us, too, so on some days I can do a lot of things and she can do barely anything, and on some days she can do a lot of things and I can do barely anything. Many of the things she is better at have more to do with the fact that she is much older than me than anything else. We have both helped each other around the house when the other one is unable to do so.

But when people look at us, they see her as high-functioning and me as low-functioning, her as non-autistic and me as autistic, her as totally verbal (even though she has a lot of word-finding problems and sometimes can’t talk at all) and me as non-verbal (even though I can sing, meow, repeat words without meaning, and sometimes have limited functional speech), her as physically disabled and me as not (or not very) physically disabled, me as healthy and her as ill, and so forth. When the reality is that we are both autistic, both experience a fair bit of fluctuation in both cognitive and physical abilities, both are physically disabled, and both have long-term health problems. It just seems impossible for a lot of people to deal with this complexity, so they find the first pigeonhole that works and stick with it, inserting various wide gulfs between our experiences that we don’t view ourselves as having (or not having to the degree that they’re portrayed by others).

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

3 responses »

  1. Just a regular comment this time.

    Over here (Sweden), they seem to be focused more on providing services (i.e. persons doing things for you) than actual problem solving. So for instance, an autistic friend of mine needed a dishwasher, but they couldn’t help her with money for that. They could provide her with a person who came to her home and did the dishes for her, something she absolutely didn’t want, for various (valid) reasons.

    Generally, the important thing seems to be creating work for as many support staff as possible, since it’s preferred over much cheaper and more effectice solutions. I’ve witnessed several other similar situations. I don’t understand it, but I guess someone does.

    Hmm… This seems to be my thoughts on both this and Another interesting study in practicality. I think. I’m too tired to figure it out properly.

    Oh, and it’s elmindreda, not Elmindreda.

  2. Sorry, corrected the spelling on elmindreda.

    I covered some vaguely-related things in my recent post on do-gooderism (which makes sense given that I have based this post after ideas I had while writing the rest of these posts). Namely, not just the providing of jobs, but the providing of work that is “meaningful” to staff as opposed to work that is meaningful to the ones it’s supposedly being done for.

  3. Thank you.

    I guess that “makes sense” in the way that, as you’ve often illustrated, the power dynamics between staff and and the persons they’re supposed to be helping is so often the absolute opposite of what it should be.

    In fact, the more I learn about such dynamics, the less inclined I am to receive aid in the form of actual staff persons, if it can be at all avoided (I’m not eligible for it yet, so I have time to think). So far, I know only one person who has a genuinely positive experience of such aid, although she didn’t until quite recently, and I know I would not be helped by what works for her.

    However, even when the person helping me is very aware and respectful, it seems the power can be shifted in odd ways through of the expectations and behaviour of others. I had a doctor’s appointment today, and was accompanied by an autistic friend, who could “translate” for me and fill in when I lost functional speech. She also appears less autistic, and it didn’t take long until they were discussing me, instad of me describing my needs.

    Even though she herself had no such desire, the doctor’s behaviour made it so, especially upon hearing that I was autistic. It was very interesting to study, now that I know to look for such things.

    Argh, getting post-length again. I’m writing an entry about that particular visit, and I guess it spilled over here. Ah well.

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