Joel Smith just reformatted and updated his website. It now has a page on Alternatives to Real-Time Speech. It’s taken from his presentation at Autreat 2005, and much of the information is useful. He also has a download of the communication software he wrote.

I’m encountering an interesting variation on a communication issue he talks about. He talks about a situation where he can speak, but only to talk about certain topics. For other topics, he has to type, and then he’s able to, for instance, talk about toothaches, and emotions, and so forth. He talks about people not always grasping that what he can say in speech is not everything he has to say, since he can speak so grammatically.

I encounter a similar problem, only it starts with typing. I can type in clear, grammatical sentences much of the time. Therefore, people assume that I am saying everything I can say through typing. I’ve even had people tell me, “Well okay so you can type, and you can substitute that for speech, so where’s the communication problem?”

Well… there’s a bunch of stuff I still can’t say through typing. And I have trouble switching between one communication device and another. The stuff I have trouble saying through typing is some of the most immediately concerning stuff, such as “I have to go to the bathroom” or “I am thirsty”. I can sign “toilet” and “water” in sign language, and I can, if presented with a set of symbols, point to “toilet” or “water”, but it’s difficult for me to type things like that while they’re happening, or go and grab the symbols when I need them.

I really need a decent communication system that combines typing and symbols in the same system, and that has the symbols set up in a logical way by someone who knows enough how to do that kind of thing. That means that the things I have the most trouble saying, I could have reminders in symbols (because some of the reason I can’t type certain things is remembering that it’s possible to type them, and then there are other reasons as well), and then symbols for other things for when I’m just having a bad typing day in general.

Which means getting evaluated by a decent communication specialist, one who grasps autistic-style communication problems, and who can try me on a variety of devices. My current keyboard is falling apart and starting to malfunction more and more, so this is getting urgent.

Michelle Dawson replied elsewhere to my post about other people’s perception of my writing as “angry” in nature. She said that she’d written to the Canadian Association for Community Living about Tiffany Pinckney, an autistic woman who died from neglect. Their response was to ask her if they could do something to make her “feel” better, implying that her emotions, not the woman’s death or any related injustice, were the problem.

I have been encountering similar things from service providers recently. In a meeting about my grievances with an organization (which included actions that jeopardized my health and safety), I was asked what would make me “feel” better. I replied that if I wanted my feelings taken care of, I would stay at home and pet my dog. It is strange, when talking about situations where life or health are at stake, to be treated as if the main problem is one’s “feelings” about the matter. (On a related note, where a problem jeopardizes not one but several people, it seems strange that I should be expected to care only about myself and my safety — or myself and my “feelings of safety” or somesuch.)

On another note, it seemed important for the person to let me know that my concerns were “heard”. I’m not sure what that means. What I care about is whether people do the right thing or not. Not whether they “hear” me when I talk about people doing the wrong thing.

When there is (as there was recently) an undue level of pollution from construction in my building, to the point where I’ve had to go to the emergency room for inhalation injury and asthma, I don’t want people to “hear my feelings of endangerment”. I don’t want them to come up with a “solution” to mollify me and nobody else, or give false solutions and claim it’s my fault if they don’t work. I want the building to be made safe for all its inhabitants. But those first several things were what was done, until I and another asthmatic had to take matters into our own hands and live on the streets until we were offered alternate lodging (and then only with a very specific kind of doctor’s note) and the construction techniques suddenly improved for the first time since the project started (but of course we were demonized in the press).

It seems that many people expect everyone to just have problems of “feelings” that can be resolved by moving “feelings” around, and also to only care about themselves. The idea that problems exist beyond emotion, that emotion is in fact not the only (or even main) component of trying to talk about or change such problems, and that the problem is not in the emotions of those who complain about it… that seems lost on a lot of people. Easier, I suppose, to reduce everything down to nice individual emotional problems with nice individual emotional solutions. Especially easier for people with power.