Attempting to find books that depict non-stratified reality.

Standard

It seems like there’s a couple ways of portraying autistic adults in most books on the topic.

We are either:

  • People who think, feel, communicate, and understand things. Who need minimal support that is rarely outlined, and where books that do outline the support needed, outline primarily social skills instruction and training in learning various skills that we are assumed to be capable of learning. We may or may not know what’s best for us, but in this category we do more often than not and are considered at least partial participants in planning our own lives.
  • People who may or may not be portrayed as thinking, feeling, communicating, or understanding, depending on the book. But who are portrayed in a paternalistic and often patronizing light. Other people decide what’s best for us, plan our programs (with perhaps a tiny bit of participation in minor decision-making, such as the famous “Do you want peas or carrots?” question), interpret our behavior in all sorts of bizarre ways, and do various things for us. We are portrayed in this context as needing much more support, but we are not viewed as very active participants in that support, and we are not viewed as capable of more than a tiny amount of learning.

The cause of this rant is the fact that I’ve been looking for a long time for a description of the kinds of services I use, so that I can figure out what services I do and don’t need, and then tell someone. Because so far, the sorts of things I have been told are:

  • That I don’t need services at all (very rare).
  • That I clearly need services, but other people will decide which ones.
  • That I clearly need services, but only the ones that are not all that useful to me.
  • That I clearly need services, but would be better off in some form of an institution.
  • That I clearly need services, and by a mysterious process that nobody explains to me, these will be decided in my absence.
  • That I clearly need services, and can even make decisions, but can only make the decisions that I am not competent to actually make, while not allowing me to make the decisions that I am competent to make.
  • That I clearly need services, but that if I cannot articulate exactly which services I need, nobody has to tell me which ones are available.

I’m dealing with two agencies at the moment, who seem to have some kind of odd division of labor between providing services. The one that deals with physically disabled people is much more forthcoming about which services are available. The one that deals with developmentally disabled people (and the one that provides the bulk of my services) claims that nobody knows what services are available because it’s all individualized (but then proceeds to make many of these decisions for me, and often makes them badly to the point of endangering my health, and then tells me that there is a means of deciding which ones I want, but does not make it cognitively accessible to me).

So I’ve wanted a book that lays out, clearly, what kinds of things are available for people like me. I suppose I should explain that I fit neither of the two categories of books that seem to be out there (and that apply to the stereotypes of high-functioning and low-functioning, as well as the stereotypes about how people placed in each categor should be treated).

Because I am:

  • Sometimes able to write eloquent sentences. Sometimes not able to use language at all. Rarely able to use speech to communicate.
  • Sometimes capable of complex understanding or thinking. Sometimes incapable of understanding or thinking about more than the absolute most basic information (more basic than most NTs know exists).
  • Generally capable of making the large-scale decisions about how I want to live my life. Generally incapable of making more detailed decisions in everyday life without a lot of time, effort, and planning, sometimes more time, effort, and planning than is available at any given time.
  • Generally incapable of doing what get called “instrumental activities of daily living”. Only capable of some of what get called “activities of daily living”, and only some of the time.
  • Capable of the kind of feats of balance and strange acrobatics that autistics are sometimes known for, if given the right triggers to action, but experience great difficulty with deliberate movement, motor planning, and sequencing.
  • Sometimes only capable of either extreme of something — either a whisper or a shout, either frozen in place or moving very fast.
  • Capable of very skilled and efficient thoughts, movements, words, typing, and/or complex actions within the narrow range that I am doing something in at a particular time, and incapable of doing anything outside that range.
  • Capable of using words that I can’t understand, and understanding words that I can’t use.
  • Good at communicating on a relatively narrow range of topics, but in many respects (including respects that affect my health) as good at communicating about some things as someone who cannot talk or type or sign at all.
  • Not capable of learning much about many of the activities people try to force me into “skills training” for, but capable of learning things that are extremely important to learn and that nobody bothers to teach me.
  • Given services I don’t need and not given services I do need, somehow all at the same time, because the services I don’t need are more convenient to staff and administrators.
  • Less capable of many everyday activities than many of the autistic people depicted in the second sort (see above) of book, and more capable of certain kinds of understanding than many of the autistic people depicted in the first sort (see above) of book, but not agreeing with the split at all or the way people are treated based on the split, and not finding either way of doing things sufficient.

I am not particularly unusual in that regard. The stereotypes are, after all, just stereotypes. And I am not, even though the literature paints it that way, some kind of mystery or paradox. How I function is how I function, and just because it contradicts prevailing ideas of how people function, or isn’t always understood well yet, does not mean it contradicts itself.

I am, however, someone who benefits from a variety of assistive technology and modifications of the environment that remove barriers to my participation in things that non-disabled people are already not blocked from participating in. Most of this, both this conception of access and the assistive tech, I learned from disabled people, because non-disabled people were too busy telling me what I needed instead of showing me my options or explaining the system.

Which means that, statistically, there must be other solutions than the ones I keep being told about by professionals. But none of the books seem to list them in a form where I can point to “Here, this would be a good idea, and that would be a bad idea, and this other thing would be a good idea with some modifications.” And most of the books adhere to a stratification system and a very demeaning way of dealing with people based on that stratification system, that I can’t deal with. (Not to mention most of them rely on a very individual/medical model of disability, but I would right now deal with that flaw as long as I got the information I needed, which seems to be nowhere.)

So it would be nice to see a book that listed pretty much everything possible, including for people whose abilities shifted around, so I could at least tell what it is that people are doing and what would be useful for them to do. Unless they pull everything out of their butts each time, and there is no such description anywhere so they can continue to do this — which would explain a lot.

Tags: autism disability books communication hierarchies functioninglabels institutions services

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. No idea if such a book exists in the printed sense. Sounds like an excellent candidate for a distributed Internet project, though. A Wiki and an announcement on some disability communities on LJ should get it started.

    Hmm… I am getting a new server soon…

  2. As a parent, I can’t agree strongly enough with the need for this kind of information. As my son was going through school, it would have helped me so much to have a comprehensive menu to look at, and it would have helped the service providers as well.

  3. “…because non-disabled people were too busy telling me what I needed instead of showing me my options or explaining the system”

    Isn’t this the truth! I just went to Bureau of Services for the Blind the other day to pick up an application for a young man I am working with. A lady came out clutching the thing, and I had to snatch it away from her. I pointed out that I did not have the complete application. I knew this because my neice and I had been in the week before and she is visibly blind and got the whole thing… in print!

    After argueing with me for a while, she says” if he needs anything else, Kevin will meet his needs.”

    I said, “You mean Kevin will do an assessment that pretty much covers all available services, and then the client will decide?”

    “No,” she says, “Like, if Kevin see the client is fat, he will recommend the recreation program. Or if the client says something like ‘I’m lonely.’ then Kevin will meet his needs.”

    I gave the client the applicaiton and said, whatever you do, don’t tell Kevin you’re lonely!”

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