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."

Bowling

I went bowling. Quit laughing, it wasn't that bad. Of course, I discovered a few odd little things to keep an eye on. Like, the breaks that I never use in day-to-day life won't completely hold against me swinging a 12 pound bowling ball without having the chair shift just a little. Which makes it a little harder, especially since it isn't predictable. Then there is the fact that it hurts when you knock the ball against the chair frame on the forward swing. Yeah, that's a vibration that shoots through my arm and leaves me shaking my hand. Why do we shake body parts that sting, it doesn't change anything, but we do it. I also discovered that bowling without a towel on my lap to catch the oil that the ball picks up leaves some interesting marks on my jeans. Did you know they put oil on the lanes and that it matters a lot? I'm learning.

I thought about putting up the bumpers and even using a ramp like the kids use. There wouldn't have been anything wrong with it, but it didn't feel right. I wanted to try and figure this out the full way. Where I got success only when I actually did it "right". And besides, I want to be able to compare and see if I get better over time.

I didn't do bad, but I didn't do good either. For some reason, I was much better with the second ball. Including a number of occasions where I didn't hit a single thing on the first ball, and still managed a spare. Sadly, I couldn't seem to get that to work on the first ball. Oh well, next time!

Someone asked why I was bothering. Well, for starters I'm dating someone who bowls a lot, and this is something we can try together. But there is also an appeal to finding a sport where I can compete. It's no impact, and the only one I have to worry about is me. I miss having a sport where I work to increase my skills. I miss the challenge, and the focus that that kind of activity can give me.

I could skip the weird little stares that I got, but it could be that I would throw my hands up with glee if I hit a single pin.

Are you really?

A lot of places say they are accessible. To give you an idea, last week I attended a function at a location that claimed they were fully accessible. A short list of the failings include: no curb cuts, toilet (obviously new) too low, accessible entrance around back was not marked and staff didn't know where it was, "accessible entrance" path was not clear of snow, "accessible entrance" went by the "shop" and was currently full of boxes, doors too narrow, and very heavy, lift is old and not in good shape (it kept trying to go down even at the bottom)(it also wasn't lit), chairs and tables spaced so that a person with a wheelchair can not get past the entrance to the room and so could not access the stage, registration areas, or food without assistance, servers leaned on wheelchair while serving food. And that's the short list, made without actually doing an accessibility audit. I was there for only a few hours. Later calls to the facility had them continuing to report that they are accessible.

Really, when you report that you are accessible, maybe you should actually think what that means. Rather than just assume you are, why not ask someone who knows.

And if you are planning an event, don't take someone else's word for it that it is accessible. Ask a few questions. Ask about curb cuts, and which entrance to use, elevators, and bathrooms. Always ask about room layout, since I find that to be the most common problem.

But really, stop telling me you're accessible. Did you really think I just wouldn't notice?

Are you prejudiced?

This is one of those tough questions to answer. Because the answer isn't about what you do or act on, but what goes on in your heart and mind.

Here's a series of interesting tests: https://implicit.harvard.edu/implicit/demo/takeatest.html

I highly recommend people try them, but be aware that finding out that it's easier for you to associate the categories "good" and "bad" with groups of people can be tough.

Actually, it's easier for me to associate "good" with people with disabilities, but only very slightly. I blame this entirely on the other people with disabilities in my life, both in real life and online. I thank each and everyone of them for helping me to overcome the initial self-hatred I had to struggle against when I realized that my disability would be permanent.

Uncovering our own prejudice is never easy or comfortable, but I find it enlightening, and it creates a starting point for developing a better person.

Give it a try!

First date, the good, the bad, and the "damn"

I mentioned a little about having a new boyfriend (I feel so high school just writing that). I want to take a moment to sing his praises, though he'll probably laugh when he sees this post.

First dates are always a bit complicated. They require me to decide how much to tell someone, and how soon to tell them. It's also a case of "what if my knee goes buggy on me, how do I explain that?" And our first date was no exception.

We met at a local restaurant, nothing fancy, just someplace to meet for lunch and talk and see if this was going somewhere. And he saw me on crutches. And it wasn't a big deal to him.

And then we went for a walk in the woods. A long walk in the woods. Ok, he walked, I crutched. And I definitely got more of a workout than he did. But it was fun. I never get to walk in the woods anymore, because walking in the woods leaves me open for falls where no one would find me, and cell service in those woods is a bit spotty. He found a way to give that back to me, without even knowing how much I craved it.

It was fun to watch him navigate between wanting to help me, and wanting to let me do things for myself. I'd say he fought himself pretty well. There were definitely times when he wanted to help and held back. But when I asked for help he was right there. It's unusual for me to find someone who gets the importance of letting me do as much for myself as possible. It's really unusual to find it in someone who has little or no knowledge of the disability community, with it's unique perspective and set of etiquette rules.

We followed with putting together a quick dinner at my place (there are limited restaurants in the area, and after dinner we would have been really stuck as neither of us are into the bar scene, so we decided to just go back to my place). At this point, I was doing pretty well, and feeling pretty strong. It's one of those rare days when I felt like I could handle the pain and I could do almost anything.

We traded off backrubs for a while. I actually have some training in massage thanks to a few fun classes while I was in college, and he may not have training in it, but he's good. It was nice to just relax and enjoy. It started at least in part as a way to loosen my shoulders after the long walk. And sort of progressed from there. Neither of us is easy on our bodies, so there were plenty of knots and kinks to work out.

And then it happened. I shifted, and my knee twinged, and I knew I was in trouble. And within a minute I was lying on the floor fighting to stay conscious with tears running down my face. It's a first date nightmare. I couldn't help but think that he'd run after this. Who wouldn't? But he didn't. When I said I was cold he got a blanket and held me (he's like most guys and has way too much body heat, it's not fair). When I simply couldn't fight it anymore I asked if would mind if I checked out for a while, jsut let go of consciousness and let my body do some repairs. Not only did he not mind, he took care of me while I was out.

It's rare for someone to be okay with seeing someone else in that kind of pain. It's rare for them to be so understanding. It's really rare for someone to see that, and still be willing to push them to go for a walk the next day.

Snow

Well, snow has come. I live in an area where snow is a fact of life for a large part of the year. And I love the beauty of it. I love how it coats the bare branches of the trees, and seems to erase the tops of the branches when the sky is a sullen gray. I love the clean look that snow gives the first day after a snow storm. I love snow, so long as I can stay safely tucked inside.

You see, snow is bad for my knee. It's bad for crutches, and worse is the thin layer of ice we seem to get under the snow. It's bad for my wheelchair. I actually got a little snow in my axle the other day, and I couldn't get the wheel back on until I had thawed it out. Of course, that means thawing it with my already cold hands, which I must then find ways to use to grip and propel the wheels.

I hate that my disability has robbed me of looking out at a snowy scene and seeing only the joy. This is one area, where no amount of accommodations can make me not disabled.

But i do have the chance to borrow a dog and turn her into a sled dog in the next few days. So hope springs eternal.

Sense of humor, or "wow, that joke failed"

Sorry for the break all. Work got busy, and I just couldn't face the idea of coming home and writing even more content after doing it all day.

Sense of humor. The truth is that there is often a fine line between joking about something, and being hurtful. I experienced someone who didn't know that that line even existed, and tripped right over it.

Here's the story:

I've recently been dating a really sweet guy. He's into bowling and I've occasionally gone to watch him bowl (I bring my knitting and it actually can be a fair amount of fun). There's someone on one of his teams that I'll call Sean for the purposes of the post. This guy is hardcore into bowling (around 30 games a week). Nothing wrong with that. I, on the other hand, haven't even tried bowling since I was about 5. I also use a wheelchair or crutches most of the time because of knee instability and pain from nerve damage. I've met the guy, and talked, but don't really know him well.

Sean texted my boyfriend and asked if he wanted to bowl a couple of games on Saturday morning (I was visiting for the weekend). I was fine with that. I even suggested that this might be the time to let me try and see if I could figure out a way to bowl. So we said sure and just checked that it wouldn't be an issue for me to join them (after all, I would be new to this and while I wouldn't try to hold the game up, I'm not likely to get a lot of strikes). His response was hurtful. To quote "Sure, just bring a shovel to scoop her up off the approach when her knee goes out on the slide". Cue me: Yeah, I know people say this kind of stuff all the time, but it caught me by surprise.

My boyfriend let Sean know that it wasn't cool, and that we certainly wouldn't be joining him Saturday.

And it got me thinking. Wiser heads reminded me that this was likely a joke that failed. And the truth is that from a close friend, I probably would have seen this as a joke. Over the years, I've had friends/family attempt to trick out my wheelchair (the Ben Hur spikes weren't really my thing, mainly because I like having hands on my wrists), joke about my crutches (which are ancient, and painted green), my knee, me falling down. I've been playfully called gimp, cripple, wheelie, and every other name they can think of. None of it bothered me.

So what's the difference. How do I explain to people that this is a situation where they could be really hurtful without meaning to, and that these are the kinds of jokes that you can only tell with close friends?

I think part of the problem is that people don't realize the history of discrimination, and so don't see it as something they have to be sensitive to. Most people would never walk up to a Black person they barely know and tell a joke that involves race as a punch line. But they don't see the same impact for people with disabilities. They don't look around and see the pervasive discrimination that I still face. It's an awareness thing. They don't see the store that isn't accessible because of one little step at the entrance, it just doesn't occur to them that that is a form of sayin "keep out". They also don't spend time talking to the people who are still discriminated against. The people who still can't get anyone to believe them, or help them, because of their disability. They haven't experienced people treated them like glorified pets simply because they use a wheelchair.

So part of the problem is that they simply don't get that disability can be a sensitive topic. It's just not part of their understanding. And the other part of the problem is that they don't seem to get that there are jokes you can make with a friend, and jokes you can make with a stranger. And you should probably ask yourself which kind you're telling.

If you've gotten this far, look around for a day and notice all the stairs you take and think that each of those is a giant "people with disabilities aren't welcome" sign. Then think hard about "joking" about that.

How many spoons do you have?

Many people ask me what living with chronic pain is like. It's a struggle to answer them. But it seems like someone finally (okay, a while ago, but I just found it) decided to come up with a way to answer that question. Thanks to the person who posted this link.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf (warning, PDF)

The Spoon Theory is useful in describing the reason you can't go out tonight. Yes, I have time to do both the cooking and go out, but I don't have the energy, or the pain tolerance. No, I can't just put off my chores for too long, because I can't do an all out cleaning for an hour or two when it get's bad. I'm not a clean freak, this is just my way of coping.

It also helps to explain why I can have good days. And why I can plan for good days (mostly). So tonight I can go dancing, but only if I'm really good for a week in advance, and plan to do nothing else for the rest of the week.

And it makes the "I can't ever stop thinking of it" concept really clear. I'm constantly checking in with myself about how many spoons I have left, and what I need to spend them on today (not eating dinner is not a good option). It gives a glimpse into the mindset of having that loom over.

Thank you Christine, for putting into words the way I live my life.

Cool Wheels

A colleague just got some new wheels. I notice new wheelchairs (and random accessories) the way some people notice new fashion trends or haircuts. I also knew that she was in the market, so I was sort of keeping an eye out. Pretty sure it's this one:

The cool thing (for her) is that it's titanium. And the reason that's a good thing is "Now the airline can't break it". Last time she flew they managed to warp the frame of her chair. And while it was usable, it wasn't comfortable.

Sad that that was a consideration, but at least she got a cool chair out of it.

Assistive Techonology -Or why I love Roomba

So there's sort of a backstory on this. My Mom was going to get a Roomba for Christmas. I found one on sale for a great price, and I thought I'd really thrill her, since she does a lot of sweeping up sand and has been talking about getting one for a long time. Then 3 weeks later I went home to visit. And discover that my Mom had borrowed a friend's Roomba, and it didn't really help her, since there was too much in the way of furniture for it to get around. Of course, now it was well after the 15 day return policy. So I was stuck with the little red frizbe. I thought about selling it on Craigslist, but I figured it might be worth it to try.

Side note: I hate vacuming. It takes most of my energy and strength, and I can only do it in 15 minute bursts. Even in my tiny apartment that means it can take a while to finish. I'd much rather have that time for other things, and that energy can go a long way.

So, I pulled it out, and let it charge for the required (or at least recommended). Then I set it in the middle of my bedroom floor (well known for it's deposits of hair) and hit the little green butten. Can I just tell you, this thing is funny to watch. It starts in a spiral, and then works it's way around the room (even cleaning under the heating registers) and finally ends with a series of foreys across the floor. After a few minutes of giggling at it I shut the door and went into the other room. Other than the ocassional bump into the connecting door, it was actually fairly quiet. I went in after an hour, and it had stopped next to the dressor, and the whole floor was clean. It even got up the hair (I have long dark hair, so it often makes the floor look much dirtier than it is). I opened the canister, and was shocked at how much the little thing sucked up (I had actually cleaned two days before). What's more, with a quick swipe of the cleaning tool all the hair untangled from the brush (which is removeable, which makes it so much easier to de-hair).

The next day I left it to tackle the living/kitchen/dining/office room. That's a lot of furniture, and I was sure it would miss large sections. Well, it didn't. I was impressed. I figured I'd have to create little walls (yes, you can get virtual walls, but I don't have any) to pen it in so it would clean, but it did a pretty good job even without that.

This isn't generally what people think when they talk about assistive technology. But it saved me a lot of time and energy, and freed me up to have a better day. It's taken strain off my body, and having the vacuming done by a little robot amuzes me no end. This counts as an assistive device.

Someone asked me how I justified the expense. And it got me thinking. It wasn't cheap, even getting a great deal. But, neither is a dishwasher (and the Roomba takes a lot less space). A lot of people have dishwashers, even though they could do the dishes my hand. There is a slight advantage of using a dish washer, namely the heat, but either way will work. Many people consider a dishwasher an essential. My Roomba (and I'm actually starting to think of names for it) costs less, and benefits me more than a dishwasher ever would. So I think I keep the little thing. One more way that technology can make my life easer.

Treat me the same

Sorry about the delay in posting, life took over. If you're still reading, expect a lot of posts in a short amount of time!

I went out with a new friend the other day. And I mentioned that people treat me differently because of my disability. He was shocked (like I said, new friend). I told him it was fascinating to watch how people treated me differently when I was walking, using crutches, or using my chair. Then he offered to push me up the hill because he was worried about me, and I tried not to laugh in his face.

People treat me differently all the time. We went dancing that night (crutches mostly, you'd be surprised how well I can dance on one leg and crutches). Several people spoke to him (even though I was right there) about how cool it was that I was out there dancing. One guy decided to talk to me, and given the amount of drink he was doing I really wished he hadn't. At the end of the night, I could see understanding coming into his eyes. People treat me different. They can't understand that I'm just living my life, and while I might do it differently than they do, I'm not really doing anything special.

I went dancing. In my case, it involved crutches. So what? It doesn't make me better or worse, it just makes me different.

It was a good reminder to me, that with all the physical barriers I fight against, sometimes it's the attitudinal barriers that are hardest to overcome.

Retreat Update

Well, I realized I hadn't updated this yet. I talked with the director, and thankfully things will move in the right direction. Sadly, this place had listed themselves as accessible, with no clear idea of what that meant beyond getting someone through the door. I went in really scared that the meeting wouldn't go well, and left feeling relieved. It's still not right that it happened, but we're working on it. It's one more thing to go into my accessible meeting policy book.

Not equal, fair

So, I've recently (and not so recently) encountered the concept that people with disabilities want things equal, so they have to be willing to put up with issues just like everyone else. It caught my attention in a comment on an article about wheelchairs, buses, and baby carriages (prams) on buses in England (an on-going hot issue over there right now judging from the number of articles). The comment wasn't the first time I have encountered this issue though.

The truth is that I don't want equal treatment. Equal treatment could very well mean that someone decides that this one setup works for everyone and since it is provided equally, that should be good enough. Equality only works here if everyone's needs and abilities are taken into the same level of consideration when designing a system. To go back to the bus issue (and out of the vagueness of my mind) if the buses were designed with equal thought given to people who use wheelchairs then there would likely be more than one space that could be used for a wheelchair. Instead, there was only one, and a Mother refused to move her baby chair out of it. So little thought was given to the needs of people with disabilities (heaven forbid we want to travel together), or to the needs of people with babies in strollers. So, yes, I guess I want equal treatment, but I want it long before I run into an issue. By the time there is an issue, it's almost too late for "equal" treatment, because the world isn't setup to acknowledge me equally.

What I really want by the time a problem happens is fairness. Acknowledgment of the fact that the world hasn't been designed with equal consideration. And acknowledgment that because of that, I start out at a disadvantage. Not because of anything wrong with me, but because of other people not thinking about disability. In the bus situation, I want people to think about the impact of their taking those spaces for something other than their intended purpose, and maybe even think about why they exist in the first place. Then I want them to realize that the only fair thing to happen is for that space to go to someone who does not have the options that they have.

It isn't about equality, and sadly, it won't be for a long time, it won't be until my needs are considered as important as everyone else's . It's about fairness.

Heartache and Victory

Yesterday I was too full to write. Writing was not the release of emotions it usually is for me. Generally, when I write, it's a chance to spill out across the page all the thoughts that swirl through my head. But yesterday, I was just too full, and the words drowned instead of flowing.

Yesterday was 7 years since planes hit the World Trade Center, Pentagon, and a lonely field. It seems so strange to realize how much time has passed. I've changed, but one look at the images and I'm back there. For many people where I live, the events of that day are abstract. They didn't know anyone who was killed, or even there, and some had never seen the towers in real life. For them, it was like really good CGI. They just don't comprehend what happened as real. In the rural country side, the events of that day haven't changed day to day life as much as people had feared, and it wasn't a life changing event.

For me it was. For me, it was a call that came far too close. Yesterday, someone asked me where I was that day. Here's the answer:

Getting ready for class. It was a differential equations class. I had gotten out of the shower, and I usually had a morning news show on in the background. That morning, it was a show out of New York. I saw the second plane hit. And the first tower fall (I was in show by then). I actually went to class, where the prof tried to tell us that it wasn't a terrorist attack and that there were a lot of rumors (there were, but I had seen the tower fall, so that wasn't a rumor). I actually sat in class (I have no notes for that day) until he handed out the weekly quiz. I put my name on it, and handed it in. It's the only quiz I failed in college. I went back to my room (with several friends in tow) and turned the tv on. Then I started making calls. It took me a while to get a hold of my Mom, and she only confirmed the worst of my fears. My Dad was supposed to be on one of those flights. All I had known was that he was supposed to have been flying from Boston to California that day. Thankfully, they had changed the meeting. Instead of having him fly out for the meeting, they had it by teleconference. Since he was in Boston, and they shut the cell phone towers down except in cases of emergency, it took a while to get a hold of him.

My sisters DF was actually a firefighter. He and his best friend/partner had switched jobs for the day. His friend was in the tower. He didn't make it. BIL (soon enough) was buried in the rubble under a firetruck. He still blames himself for his friend's death. After 7 years, he's just going back to being a firefighter (and only in a town where the highest building is 2 stories).

I can't look back without realizing just how lucky I was that day, and just how many people never got that call that their loved ones were safe.


In other news (which I avoided for most of yesterday), there was a victory in the disability rights world yesterday. http://www.civilrights.org/library/features/024-senate-adaaa.html The Senate passed an amendment to the ADA that allows for a wider range of people to be considered disabled, and therefore eligible for protection under the law. It's about time!

Retreat?

So, I went to a work retreat Friday. These are supposed to be a time for people to relax a bit, and talk through some of the weighty issues that we struggle with. Well, relaxing was not what I was up to.

It's amazing, my wheelchair has become enough a part of me that my co-workers have apparently forgotten it. The retreat was scheduled very last minute. And not in an area of the state that we usually would host events. And so the place that was selected wasn't accessible. Cue the huge sigh, and me grabbing my crutches. Grrr!

The site was fine other than a few stair, but I had a bad night the night before , and pain and crutches aren't a great mix. I made it work, but...

The first activity was a "get up, move around, and share something about yourself" kind of thing. Well, that wasn't going to work for me. So I stayed where I was, and thankfully a few people came to me. Otherwise, I would have felt very left out. Clearly, this activity was not planned with accessibility in mind.

The afternoon wrap up included a chance to throw a ball of yarn around and make a web. Except that people throwing things near me makes me very nervous. Thankfully, I managed to dodge when the ball went flying out of control, but really, this was an odd choice for this group.

Part of me wants to feel relieved that my disability is so normal that people almost forget it, but that's the spin I try to put on things. The reality was that they just didn't think about accessibility when planning this retreat. And not because they didn't see my disability as a big deal, but because they ignored the needs that it creates.

So, I hurt, and I'm hurt. Not quite what I needed to get out of this retreat.

A victory!

So, I was reading my way through the articles that the Google News Alert had dragged up for me, and I came across one that really caught my attention. (http://inbedwithfridakahlo.wordpress.com/2008/09/05/disability-news-breakthrough-on-airline-travel/)Like most people who use a wheelchair and fly, I've had my share of problems. Rarely do I have an uneventful trip. Co-workers traveling with me are often amazed at the challenges I have to deal with. Now, no one has ever denied that the Air Carriers Access Act provides some guidance to airlines. The problem is that when it is violated your only option for resolution is to file a complaint. Enough complaints, and the government will start issuing fines. While that does seem to keep the worst of the violations at bay, it isn't sufficient.

Now, a federal judge has ruled that the ADA applies to airlines. http://www.detnews.com/apps/pbcs.dll/article?AID=2008809030438 I don't know that this won't be overturned eventually. But what this means is that for the first time, if an airline completely screws up, and refuses to fix the problem, you can actually sue them yourself and not rely on the government to handle it.

For those of you without disabilities, you may be thinking about how awful it is and that lawsuits are already rampant, but I do think that the threat of a lawsuit is likely to improve the services that airlines offer.

Friendly skies, maybe not, but maybe they'll be a little more accessible after this.

ADA, getting a job and fear vs. reality

So, a comment over at Wheelie Catholic left me thinking. And oddly, it lead me to thinking about employment. I can't quite trace the thought line, but even if I could, I don't know that I want to screw anyone else's brain up as much as mine is. ;)

The ADA does not allow a prospective employer to ask about someone's level of disability when they interview them. That's a good thing, except when it isn't. The issue, is that because they can't ask, they also can't judge how hard/expensive accommodations will be. And I worry, that all too often, their fear keeps them from hiring me. They see a wheelchair, but they can't ask if that means I'll need a more flexible schedule, or more sick days. They can't ask if I'll need ramps, or a fully accessible bathroom. While it would be nice if every place was completely accessible, that isn't a reality yet. They can't ask if I'll need a special desk or anything. And, so, I wonder if they worry.

Part of me, wishes that they could ask me, and I could explain to them that we can work through it together, and that my needs aren't nearly as expensive as they are probably afraid of.

I wonder how many places don't hire someone, because they are creating a bigger problem in their head than actually exists in reality.

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!