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?

Meditation on how we define disability

Okay, so this isn't my idea. I'm borrowing it (because borrowing is a nicer word that stealing ;) ) from Arc. http://arcnwsptr.blogspot.com/2008/08/adventures-of-disabled-village.html

It poses and interesting question. I keep trying to convince people that for the most part, people with disabilities are not disabled as a result of our bodies limitations. I'm not disabled because the nerves in my knee go haywire. I'm disabled because the world was designed for someone else.

So I started thinking what an ideal world would look like if everyone were disabled in the way that I am. The big issue would be parking! For starters, I'd be able to find housing that's really accessible, not just workable. I'd have a place in the kitchen where I could sit in my chair and make bread without trying to sit sideways and kneed bread that's just below my eye level. Taking a shower would be easy, and I wouldn't have to worry about making sure the grab bars hit the one place where the landlord reinforced the wall. Recycling would be easy, since the recycling center would actually be setup for people with wheelchairs (I hate having to choose between not recycling and asking for help to manage it).

My workplace would be full of wide hallways where I could turn around. Copiers would be lower to the floor. Those silly "slide your card" things at grocery stores would be low enough that I don't have to memorize the pattern, because I would be able to actually see the screen. Imagine what grocery stores would look like if everything had to be within reach of a person in a chair. Of course then I would lose my edge, the healthiest and least expensive stuff is right at my eye level right now.

Oddly, in my world the ceilings wouldn't be lower. I still need to be able to stand on occasion. It helps me stay healthy and lets me keep the strength I still have.

Oh, and shoes wouldn't have stupid high heels that keep slipping down behind the footplate and dragging on the ground. Not that there is much of a use for high heels when you use a wheelchair (hey shoe people, why not have cute flats?)

About Time!

I admit it, I'm somewhat addicted to politics. I generally follow the major races pretty well, but my preferences has always been for the slightly smaller races. I know who represents me in the US House and Senate. They hear from me regularly. And while I can't quite see myself ever running, stranger things have happened.

So I was thrilled to see this article a few days ago. Bit by bit, the buildings of congress have become more and more accessible. Having visited, I'd say the biggest challenge is convincing the security people that it's really okay, they can scan the chair and I won't take it badly (in fairness, I was visiting on a big day, and many people there were probably VIP types).

But one place has remained inaccessible, the seat of the Speaker of the House. In one of those odd things about the house, while there is an official Speaker for the House, other congresspeople take turns sitting in that seat and running the conversation (at least in part because congresspeople are rarely actually in the room, they are there for votes, and when they are making speeches, most stuff actually happens behind the scenes). But until recently, a person who uses a wheelchair couldn't get up there to play that role.

And finally that changes. One less place that is inaccessible. An important seat of power.

It gives me hope. Access to a seat of power can only lead to more legislation that evens the playing field. My fingers are crossed!

A disabled life is still worth living

So, I'm back from vacation (got to love sitting in the sun with a book for a week). And I get started catching up on my favorite blogs. And something jumps out at me.

I got caught up on something. Far too many people still don't see the lives of people with disabilities as being worth living, never mind being as worthy as their own. We are still seen as less valued, less human, and less able to really live.

Did you know, that half of all Americans would choose death over having a disability? http://www.freerepublic.com/focus/f-news/2046028/posts I don't know how to take that. I mean, they are effectively saying that they would rather die than have my life. Now, in fairness, this was specifically about " Living with a severe disability that forever alters your ability to live an independent life" which you could argue that my disability doesn't. I can, and do, live alone. But it has altered my ability to live an independent life in many ways. And my reality is that it probably will eventually effect my ability to live independently. At that point, am I supposed to want to not live anymore?

WheelieCatholic talks about a recent incident where someone turned away and said that they couldn't live with her disability. WHEELIE CATHOLIC: How are you? Proving that this is not just something you see in surveys, it's part of daily life. I can't tell you how many people tell me they couldn't live with what I have. Oddly, I think they mean to compliment me. Sort of, "wow, how strong you are". Instead it comes out as pity, and it shows how little they understand me, my life, and the very nature of the human spirit. Really, what alternative is there to learning to live with it. It's not a monument to my strength, it's a monument to the fact that the human spirit refuses to give up. But I'm getting off track...

Finally, I stopped by Chewing the Fat, and what I read there reduced me to tears. Dave spoke eloquently of discussing the horrors of the holocaust. And not the horrors of what happened to Jews, but the horrors that came before that. He talked about explaining the evil that was perpetrated against people with disabilities. I'm always surprised how many people don't know anything about that part of the Nazi plan. They wanted to eliminate people like me. I have no doubt that had I lived then, I would have been killed. It's an odd feeling. What's odder is wondering if people actually feel differently today.

Dave branches out to discuss the ongoing elimination of people with developmental disabilities through the use of amnios and abortions. Now, I won't go as far and say that killing living people is the equivalent of killing a fetus. But I do question the thinking behind eliminating fetuses that have down syndrome. Why? If you want a child, you need to be prepared for them to have a disability. It's not like you can look into a crystal ball and know if your child will be healthy for their whole life. For that matter, I was perfectly healthy until I was 16. But my parents had to figure out how to parent a child (well, not a child so much) with a disability. So if you aren't prepared to have a child with a disability, you probably shouldn't be having children.

I'm saddened by the pressure that is put on people to abort fetuses that show signs of down's syndrome. Doctors present it as the only realistic option. They ignore the idea that a parent might choose to willingly raise a child with down's. If a doctor suggested that any other factor be used to determine if a child should be born or not then that doctor would be in front of a medical board fast enough to make your head spin. Imagine if we encouraged people to abort children with a gene that would make them short, or nearsighted, or black, or female. No one would be okay with that. So why are we so accepting of aborting children with disabilities? In the end, I think it comes back to the idea that people with disabilities don't really have real lives. Our lives must be miserable, so it would be better for us to be dead.

Let me tell you, I have a full life, and I'm not embracing death any time soon. I'm quite happy with my life. I work, I have friends, I date, I even vote (take note politicians). Actually, I'm more successful than many people my own age. Really, my life is better than death, I promise.

"Higher" Education

I know, I'm on a news kick these days. But the stories are a reminder of how far we still have to go. And sadly, I've heard too many people argue that people with disabilities aren't discriminated against anymore. So let these news stories prove my point to all those who doubt.

http://insidehighered.com/news/2008/08/06/mcneese

Well, this one sounds far too familiar. I remember having these arguments with my University. Thankfully, it wasn't over the only bathroom in the student union building, but still.

So let's look at the arguments...
1) she didn't need the wheelchair, because she could walk, so she wasn't disabled enough to qualify
This just proves that the ADA needs to be clarified when it comes to defining who qualifies. I can't think of a single reason that she wouldn't be "considered a person with a disability". She qualifies, and arguing that is just pathetic.

2) There wasn't enough money.
It's one bathroom. And it's been seven years since this incident, and the ONLY bathroom still isn't accessible. Nope, not buying that one. I'm sensitive to the limited budgets of universities, but I won't buy that there wasn't money to renovate one bathroom.

3) Classrooms were the priority.
Okay, except that the union building had the two major cafeterias in it. And many of the school's offices. So it's not like a person with a wheelchair could just avoid the whole building. And there's something I remember from my school days. Some buildings weren't accessible (and weren't required to be because of age). We handled it by moving my classes to accessible rooms/buildings. Sure, it probably inconvenienced a few profs who actually had to emerge from their buildings, but it meant that I could go to classes. Why doesn't this university try that. Then they might have the money to renovate the bathroom.

Such a sad argument that this university is making.

Shopping may be fun again in California

The Court of Appeal of California has overruled a lower court's decision about having racks so close together that a wheelchair can't get through. http://www.insurancejournal.com/news/west/2008/08/06/92563.htm

Most people who use wheelchairs and enjoy shopping understand the challenges. Racks that are too close together to get through (and I don't just mean you have to go the long way around, I'm talking entire sections of stores that are inaccessible). Merchandise that is too high (and no one around to help). Dressing rooms that are too small to fit the wheelchair, never mind trying to change. And those tags that are just the right height to scratch the living daylights out of my arms. Okay, that last one is probably pretty minor, but it's really hard to explain to other people the next day.

Well, in California, someone has finally recognized that this likely violates the ADA. It doesn't matter if the racks are moveable, because the are still in the way. They still prevent people from reaching the clothes.

Now, the lower court recognized that as a problem. They gave the chain an out because they reasoned that if they had to make it accessible then they wouldn't be able to put as much stock out and they would lose money. Of course, every other store that must operate under the ADA has that same problem, so it isn't like this would be putting them at a disadvantage. It would just be leveling the playing field.

Hopefully this ruling will hold up, and stores will start paying attention to the fact that people in wheelchairs shop too!

A sad day when you find a way around the ADA

Well, the state of Wisconsin has decided to offer a variance to an accessibility law. http://www.channel3000.com/news/17113541/detail.html

Basically, the state is allowing a developer of an apartment complex to have a 4 inch drop between the apartment and the balcony. It does say that "However, a person with a physical disability recognized by federal authorities, such as someone in a wheelchair, can ask the developer to rip out the old door and install a new one that is nearly flush with the floors, removing any accessibility concerns." Great, that should encourage the developer to sell to someone with a disability. Let's add more reasons for them to discriminate. Oh, and what if the original owner sells it? Will the developer come back and change out the doors if the new owner needs accessibility?

This is a sad thing. The ADA has been in effect for 18 years, there really is no excuse at this point. That the state has decided to overrule this important legislation is highly telling of both the state, and the protections that the ADA/FHA actually provide.

Yet one more apartment building that won't work for a person using a wheelchair.

When to tell

Dating is a challenge if you are disabled. When your disability results from abuse, it's even more challenging. When chatting with someone online, when do you tell them that you are disabled? When they ask what happened, how do you answer?

I've come to the conclusion that I want people to know about my disability right up front. Let's be honest, if they aren't interested in me because of my disability, I'd rather not get involved with them at all. Besides, I would hate to show up for a date and have them run when they saw the chair (it really doesn't bite people).

It's interesting the responses. I've gotten a few "are people like you allowed to date", umm, I don't believe there is a law against it, next! A few "so, umm, do you have feeling, how does that make sex work?" Well, I do have feeling, and either way, a few e-mails first at least. Way to tell me what you are really looking for ;) And finally, a few "wow, you are so brave for putting that up." Well, no, I'm being honest. And in a way, I would rather be turned down before I meet someone than after. So, not brave, just protecting myself.

The second challenge is how to explain what happened. I'm disabled from some combination of a springboard diving accident, surgery to repair torn cartilage, and a boyfriend who dropped a weight bench on it about a week after surgery. Somewhere in there the nerves went haywire. So do I tell a potential suitor the whole story? Do I let them in on my abuse history that soon, or do I wait? Part of me wants people to know. It's not my secret, and I refuse to be ashamed. At the same time, that's a pretty personal thing to tell someone on a first date. Not exactly a happy topic. I mean, abuse has got to be a bigger first date "no-no" than politics and religion.

In the end, I just answer the question. My policy is that if they ask more, I'm happy to answer it, but if they don't ask, then I don't generally bring it up. I've seen a few too many people who freak out. They either get mad at my abuser and want to track him down, or they can't see me the same way. The truth is, surviving abuse is part of who I am, and all I want is acceptance of that.

There are probably people who are wondering why this belongs on a disability blog, since a lot of it is really about abuse. But for me, there isn't a separation. When I had to come to terms with my disability I was also dealing with the aftermath of abuse. The two are linked for me. Sadly, there are few resources for people like me who are fighting to change that. Just once, I would like to meet someone who understood the way the two issues entwine.

Dating, disability, and abuse. Ah, the complexities of my life. ;)