Things I've Learned

I flew. Those of you with disabilities are probably already cringing, but it wasn't bad. All in all, no major problems. The only damage to my chair was a nick in one of the stickers on my wheelguards. A big old nick right in the middle of the "Knit Local" sticker that my local yarn shop gives out. And the slightly annoying process that US Airways has put into place where they fill out a sheet of paper that has your disability needs on it. And then they have you give a copy to each person you encounter (ok, gate people and flight attendants). Still, I got asked at least twice for each flight if I needed an aisle chair, and several times they tried to call for one of their wheelchairs. No thanks, I brought my own.

But I went to a conference on Crime victims with disabilities. I know, it doesn't sound like a happy conference, and in many ways it isn't one. But it is uplifting in a lot of ways. To hear stories of people who have survived, and succeeding in pressing charges is wonderful. To see law enforcement and other members of the criminal justice system learning about this critical issue was encouraging. And every bit of this conference reminded me why I do this work, and why I fight so hard.

On the last day the Bureau of Justice Statistics released a major government study on the victimization of people with disabilities and Deaf people. http://www.ojp.usdoj.gov/bjs/abstract/capd07.htm
Except there are a few major issues with the studies. The biggest ones in my opinion are that they exclude anyone living in an institution (which includes some group homes), and they were not able to make communication accommodations (they were done by interviews, so they were able to simplify and explain language, but this still would have excluded some people). These are major drawbacks, because the study shows that people with cognitive disabilities are some of the most vulnerable. And yet their study design excluded many of those individuals.

Still, it showed that people with disabilities are roughly two times more likely to experience crime than the general population. So to all the people who say "but we never see a person with a disability here" I say, "look again, because they are out there."

Victims, again

So, it's time to write again (not that I have a schedule). I actually got the inspiration to write this post a few days ago, but couldn't get it into words in a way that satisfied me. I still haven't, but I've accepted that this is what I've got.

Wheelchair Dancer posted a few fays ago with an article about sex being a major life function. My first thought was, duh! And I wonder how many able bodied people would be willing to say it isn't, until you apply it to them. But that wasn't what really had me thinking. What really got be going was a short section (with later discussion) where she discussed victim hood, and how we are forced to that role.

Adam's counsel's thinking is beautifully clear and utterly smart: it highlights the way in which current disability legislation forces those who would bring a case to define themselves as victims in some way.

It reminds me of when I was filling out the social security paperwork, and the insurance paperwork, and all the other "prove you have a disability" paperworks I've seen in my life. For those of you who haven't seen these forms, let me explain a bit. For the most part, they want a diagnosis. Well, that's all well and good, but for a long time, so did I. That doesn't mean I had one. There's no "seemingly random chronic pain that we can't treat, but don't know what it is" category. I usually had a diagnosis, but it changed every few years, so I don't know how useful that was. Then they want a list of every medical procedure you've ever had. Really, if you want me to list it all out, you need to give me more than one sheet of paper. Finally, they start asking you about how bad your life is. They don't phrase it quite like that, but that's what it amounts to. Talk about how much longer it takes to get out of bed, and how often you can't. Then list everything that it is harder to do now than it was before you were disabled, and talk about how much harder. Talk about your pain, and your mental state as a result of your disability. Tell us exactly how much you can't care for yourself.

When I finish each of these forms, I cry for the rest of the day. Because I don't think of my life as being that bad. I get frustrated with the lack of access where I live, and the ignorance that I encounter. But I rarely think of the things I can't do. I prefer to focus on what I can do. I focus on my good days, and survive the bad days. That's how I deal with my disability. But these forms force me to take the other perspective, and it usually takes a day or two to re-adjust my thinking.

For Ms. Adams, in order to get justice under the law , she had to discuss just how hard her life had become as a result of having cancer and surgery. And she had to discuss how hard it was to feel comfortable with her sexuality again. Had she been fine with losing a breast, she would have no way to get justice. Re-read that sentence, because that's the heart of what I want to say. Had she been okay with her disability, she would not have been considered disabled enough to get justice, no matter what anyone else thought of her. So if I'm okay with my pain level, does that mean that it's okay for someone to look at me and think "she can't do that job"? Because that's the argument being made here. And it leaves me feeling sick (I would qualify on the basis of not being able to walk). Or was stated in Wheelchair Dancer's post:

Professor Colb takes up an interesting perspective: "When the law seeks to extend protection only to those who are truly disadvantaged, it – perhaps inadvertently – compels plaintiffs to adopt a victim identity. Rather than saying only that she had cancer and that she survived it and can now do anything that anyone else can do, Kathy Adams was compelled to tell the court (and thus the public) about her fears of sexual intimacy and the debilitating impact of her surgical disfigurement and medical side effects.

I urge people to think about this. You can be a victim and get services in this country, or you can be yourself, and not get the help you need, which turns you into a victim.

For another example of how this plays out. Accessible housing is almost non-existent in my rural area. That's just a fact. Most of the housing that is accessible is intended for people who have low incomes. Since the government is building it, they have a certain amount of accessible housing. Because I earn too much money, I don't qualify. So I settle for an apartment that doesn't work at all (steps getting in, so it's difficult to impossible to use my chair). Which leaves me dealing with more pain, and has put my job in jeopardy a number of times. So having a job means no accessible housing, which makes keeping a job harder. If I quit, I would actually qualify. So if I was willing to be more of a victim... On top of that, not being able to use my chair in my apartment could make it harder to get it covered by insurance when it needs replacing. Can you see how it would be tempting to just give up when faced with this situation?

Hey, government, can you stop trying to make me a victim in order to get the help I need?