Modest Goals

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“Disability Awareness.” For some it’s a blanket term covering all the aspirations disabled people have for social acceptance and having our needs accommodated. For others, it’s hopelessly vague, and in practice, meaningless. For a long time, I haven’t had much use for disability “awareness” myself, until just recently.

As disability activists have struggled to pass key legislation and defend the imperfect supports disabled people already have. Disability culture strives for full representation and a wholesale redefinition of disability. Meanwhile, I have started to feel like it might be useful to rethink the basics. We have pretty good ideas of where we want laws and institutions to be regarding disability in society, but achieving those goals seems like a tall order. Is there a more basic set of goals we can achieve on a person-to-person level? Should we aim a bit lower in the short term, and adjust our expectations with people … non-disabled and some disabled people too … who aren’t quite equipped yet to deal with the ambitiously ideal world we are working towards? If expecting people to get it all perfectly right with us is correct but unrealistic right now, what can we reasonably expect?

The more I think about it, the more convinced I am that any actual goals we have for “disability awareness” need to be modest, at least for the foreseeable future. That seems logical, if a little bit uninspired.

So what, exactly, are some modest, realistic goals? What can and should we hold people to, (even perfect strangers and disability newbies), with confidence and assertiveness, and without having to put them through a ten-part disability seminar?

1. Understand and accept that some forms of praise and sentimentality make us uncomfortable. Of course you mean it in the kindest, most positive way. Most of us like specific praise for the work we have done, or our objective accomplishments and efforts. But random praise from strangers and casual acquaintances, simply for living and functioning, usually make us feel awkward. It's a little like being gushed over by the teacher in front of the whole class. And almost none of us likes it when people talk to us with that sweet, saccharine voice normally reserved for infants and adorable pets.

2. Know that disabled people, to varying degrees, have to deal with discrimination that can be personally annoying, but also sometimes life-altering and life-threatening. We call it “ableism,” and though the word may be new to you … and maybe sounds a little contrived … it describes a real thing with real-life consequences. We don’t all experience it in the same way, or to the same degree, but all of us do experience it.

3. Recognize that disabled people are under a lot of social pressure to be cheerful and uncomplaining ... brave soldiers and inspirational examples to others. That means that reacting to disabled person’s personality and tone is more complicated than simply liking and praising disabled people who are sweet, and disliking or disapproving of disabled people who seem grouchy and dissatisfied. If we are hard to live with sometimes, we often have reason to be. And when we are unending rays of sunshine, that can sometimes hide how things really are for us.

4. Unless you are in a specific official position that explicitly requires you to determine somebody’s disability, you should just believe what people say about their disabilities. Anyone can be a liar or self-deluded, but it's particularly obnoxious for disabled people to be constantly doubted and questioned by random people for no good reason.

5. No, we haven’t fully decided what to call ourselves. At the moment, there seems to be a tie between “person with a disability,” and “disabled person.” The best thing for non-disabled people to do in most situations is accept what each of us chooses for our preferred terminology, and leave it at that.

6. If you’re non-disabled, don’t try to “educate” a disabled person about disability. It may be well-meaning, and you my well be right, but it’s presumptuous in a very personal and fundamental way to try to explain our disabilities to us. In fact, even if you are disabled yourself, be very careful and humble about “correcting” another disabled person's views about disability.

None of this is beyond an ordinary person’s ability to understand, or at least practice in everyday interactions. It doesn’t require a background in sociology. You don’t have to be politically progressive. And you don’t have to have a disability, or have a disabled person in your family. At the bottom of each of these goals is a simple thing that may require some effort and the occasional reminder, but needs little in the way of knowledge or education: Treat disabled people as people with agency, unique stories, and human perspectives of their own. And then act accordingly.

It's not too much to ask.

Disability Thought Of The Week: More On Advocacy and Activism

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I’m going to try to write a blog post later this week on something I have been thinking about a lot lately.

My thought, which I am trying to tease out and shape, is that what is usually called “self advocacy” and what is generally understood to be “disability activism” are of course related, but call for very different strategies. Approaches that can be smart, ethical, and effective for self-advocacy in your personal life are not always right or successful for larger-scale systemic advocacy on disability issues. And vice versa, maybe. I hinted at this in a post from last month, but I want to explore it in more depth, with more specifics.

I hope to have more to say on Friday, or maybe the weekend. In the meantime, feel free to use the comments to suggest examples.

Disability Thought Of The Week: Judging Activisms

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Can We Stop Arguing About the “Right Way” to Be a Disability Activist?
Andrew Pulrang, Rooted In Rights - May 4, 2018

People seem to like this piece I wrote for Rooted In Rights. TL;DLR … We should stop judging others, and ourselves, for which modes of disability activism they / we choose.

I may write what would probably be a more controversial followup on how we think about the content of disability activism, as distinct from methods. Should we be as open and accepting of all disability activism goals as we are of how and where to pursue them? What do we do when a disabled person does disability activism activities in pursuit of, say, medical research, or a personal advocacy goal, or to keep a sheltered workshop open? Does it matter what “we” think?

Disability Thought Of The Week: Disgust

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While meeting with the U.S. Winter Paralympic Team, President Trump praised the Paralympics as “inspiring,” but “hard to watch.” Most people I have contact with feel that he meant that watching disabled athletes do their sports is painful in some way. I have also read suggestions that in context, Trump meant that since he’s so busy, it was hard for him logistically to watch the Paralympics, not that he disliked watching them.

I can’t read President Trump’s mind. Given the circumstances, I actually think these two interpretations are about equally likely to be correct.

However, I can’t help thinking that it would be thoroughly consistent with what we pretty well know about Trump if he really did mean watching disabled athletes is sad, pathetic, or gross to him. Trump strikes me as a man strongly driven by disgust … by visceral reaction against anything he perceives to be ugly, dirty, abnormal, or tainted. He seems to feel this way about immigrants, … especially brown-skinned, non-European immigrants. He also tends to use words like “disgraceful” and “disgusting” a lot to describe anything he disapproves of. This suggests his main mode of judgment is very physical, as opposed to intellectual, ideological, or moral.

Then there’s the much-discussed example of his very physical mocking of Serge Kovoaleski, a visibly disabled reporter, during the 2016 Primaries. That was also an incident where a more benign interpretation was possible, but more unlikely the longer you look at it and get to know Trump’s reactions in various situations. I never thought that incident was much of a big deal, even though I'm pretty convinced he was mocking the man, just like a playground bully. Policies and actions mean a lot more to me, and in a weird way, outright jeering at disabled people tends to be less shocking to actual disabled people than it is to non-disabled observers. Still, this Paralympics comment has me thinking again.

My take is that it's not crucially important how he meant the statement. The incident is, if nothing else, an important reminder that there are still lots of people who aren’t just uninformed about disabled people, but also find disabled people disgusting, physically upsetting, in a very instinctual but profound way. I suspect that Trump is one of those people. I may be wrong. But it’s not actually saying much to suggest that Donald Trump might be disgusted by disabled people. Lots of people are! You don’t even have to be especially evil or hateful to be repelled by watching disabled people on TV or meeting them in person. You can even be disgusted by disabled people, and admire them at the same time.

That’s how ableism works sometimes!

Disability Thought Of The Week: Your First Time

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When did you first flex your advocacy or activism muscles?

What was the first time you really spoke up for yourself, as a disabled person, to assert your rights and disability-related needs? What was the first time you participated in activism, with other disabled people, on a disability-related public issue? When was it? What was it about? At what point in your life did it happen?

I’m asking myself ... and I’m asking you, the reader. Respond however you are able, with a blog comment below, a Twitter reply, or a Facebook comment.

Disability Thought Of The Week: Good Things Are Actually Bad

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About 70% of disability activism involves trying to explain that things people think are good or nice for disabled people, (or at worst harmless), are actually bad.

For example:

  • Sympathy
  • Sharing photos and videos of inspirational disabled people
  • Non-disabled actors playing disabled characters
  • First responder registries of disabled people
  • Assisted living facilities
  • Nursing homes
  • Sheltered workshops

These are all things that most people think are good. In many cases, they don't think it. They just assume. It falls to us as disability activists to persuade them, essentially, that blue is actually red. Sometimes we have excellent arguments for this, but often we just have to insist that people take our word for it.

This is one of the built-in problems with disability activism; it’s inherently negative. It really has to be. But that's why it's so important for us to craft and push forward a “positive” agenda ... a set of things we affirmatively want.