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!

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. ;)

Victim

You know, I actually hate that term. I work in domestic and sexual violence. So that probably has something to do with it. I hate the term, because it leaves open the question of whether there is a perpetrator. In domestic and sexual violence there clearly is a perpetrator, but people are often described as victims of domestic/sexual violence, as if somehow the violence was what had injured them. And the idea of being a victim of one's circumstances. Clearly, there is rarely a perpetrator in these situations, but it sounds like there could be.

I have been seen as a victim, and at one point, I saw myself that way. I am a survivor, and to edge into the corny semantics of the English language, I generally consider myself a thriver. I live my life. It is not the same life I would have lived, but it is a life that I embrace.

So you are probably wondering what I'm talking about at this point. Well, two things. Two things that are so entwined in my life that I no longer have the ability to separate them out. The first, and the cause of the second, is that I am a survivor of domestic violence. I hate that even my saying that, I am hiding the existence of my abuser. I hate that I live with the consequences of that, while he has no idea of the damage he caused.

Many people try to tell me to just get over it. This ignores the very real issues of living daily with the results of the worst moments of your life. I have PTSD, or rather, I did, I no longer meet the definition, though I still have some of the symptoms. I hate having to explain what a flashback is, and having people get angry when I can't simply will them away. It doesn't work like that. It isn't just a memory that I can dismiss, it's a reliving of absolute hell. In that way, I'm still a victim. And I'm still fighting for control of my life.

And as for the second, I am a survivor, and still a victim, of using a chair. The pain that necessitates the chair results from the abuse I faced. You can probably see why that would complicate things. I had to deal with abuse, and deal with becoming disabled all at the same time. In many ways, they are still horribly complicated.

I think that's why it's so hard for me to handle it when I face discrimination because of my disability. Because it winds everything up and makes me absolutely miserable. And then it makes me angry. Because I refuse to be put in the position of being victimized again. I refuse to put up with someone trying to control me, even if only by telling me that I can't go into a building, or use a bathroom. It may seem like a tenuous connection, but for me, the link is real, and located well below my brain. It's a gut reaction, that ten years has not eased.

So there's my ramble for the evening.

An empty wheelchair

I'm rambling, so forgive me.

Someone once told me that an empty wheelchair was a scary sight. I think I understand this. After all, our conception is that people rarely just climb out of their wheelchairs and walk away, so where did the person go? Did they fall and are now trying to get help? Did someone scoop them up? Did the chair roll off on it's own? I should note that this anxiety only seems to be around "personal" wheelchairs. By that I mean, the bank of wheelchairs at the mall or the hospital aren't quite so troubling, maybe because they don't belong to someone.

The truth is that there are many reasons that a wheelchair could be empty. The person might have actually gotten up and walked away, some of us do. There might have been an area that was not accessible by chair and the person was helped to a seat and left the chair behind until it could be brought to them. It might even be set up waiting for it's new owner/borrower.

In the end, I think my own discomfort about this stems from the fact that my chair is such a part of me. I can and do walk regularly. Mainly when I can't get in some place (like an apartment). But leaving it behind is scary. Not having it available makes me feel like part of my body is missing. I miss it, and feel less whole. Which is ironic because most people see me as more whole when I walk.

Shoes and fashion

So this is a very belated rant on shoes and fashion inspired in part by Wheelchair Dancer's article on shoes (Wheelchair Dancer: Name and Shame: Shaw Shoes).

Why is it that all fashions are created to only look good on people when they are standing? Seriously, I have tried on so many outfits that look great when I'm standing, but the minute I sit down I seem to gain 30 pounds and lose a waist. Or they gap in the back, and could cover my knees in the front.

Now, most people these days spend most of their time sitting, right? So wouldn't it make sense to have clothes that look decent regardless of whether people are sitting or standing? Maybe this is the real reason it's proper to rise to greet people?

They do make "wheelchair" clothes. But throw that into a search engine and you are most likely to find something like a muu muu. No offense to those of you who like them, but I'm 26, I'm not ready for a muu muu. And you want to talk about adding weight, well, I refuse to wear those things. When truly stylish clothes designed for people in wheelchairs exist, they are horribly expensive. These mostly show up as jeans or slacks. But I'm not quite ready to spend $80 on a pair of jeans.

And people wonder why I sew my own these days. Hey fashion designers, why not design something that looks okay when people are sitting?

Teach the children

I miss walking. I miss not having parents pull their children away from me. I can never figure out if they are expecting that I will run them over, or if they are worried that their kids will hurt me somehow. I understand not wanting people to get in the way of people moving in general, but I'm not anymore out of control than a person walking and I'm not more likely to run a child over than someone else. Actually, I'm less likely, because I'm at their level, and I'll notice them.

I often see kids ask their parents questions and their parents quickly shush them. I get it, we don't want children to point out differences of every person that they see. It's likely to lead to issues later. There's one problem, if they never get the answers, then they grow up afraid of people with disabilities. There's also the problem that parents don't necessarily know the answers either. I would rather have parents or children ask me a question and learn and grow more tolerant, than have them stay afraid.

Ask. Ask respectfully and I'll answer.

ADA Restoration Act

As many of the people reading this might be aware, there is a push to update the ADA (American's with Disabilities Act). http://www.aapd-dc.org/News/adainthe/indexada_restore.php

Basically, judges have eliminated many of the protections of the ADA. It's the only civil rights legislation where you have to first prove that you deserve to be protected. It would be like having to prove that you are black enough to not be discriminated against for being black. It also tries to decide who is "disabled enough" to need protection. I say if an employer won't hire you because of your disability, you're disabled enough.

Critics say that it would kill small businesses. http://www.employmentblawg.com/2008/does-the-ada-americans-with-disabilities-act-need-restoration/ By expanding the definition of disability, it would end up including everyone who had even a minor physical "imperfection." Of course, this ignores the fact that you shouldn't be discriminating against employees because of scars either, and that the ADA only comes into effect when there is discrimination. So I actually find that to be an odd argument.

Another objection is that it still considers someone disabled if there are medications or assistive technology (including glasses) that can mitigate the disability. Well, if someone is being fired because they need glasses then that's a pretty stupid reason, and it probably shouldn't be allowed. You shouldn't be fired for being hard of hearing just because you have hearing aids. You shouldn't be fired for being diabetic even if you control it with insulin. So what's the issue here?

Finally, critics object to the idea that the ADA would then force employers to PROVE that a person can't be qualified to do a job even with accommodations, or PROVE that the accommodations are not reasonable. It takes the burden of proof off the person with the disability and onto the employer. I'm not quite understanding why that's a problem, but the article I linked to seems to think that this will have people with disabilities suing over every management decision. Again, ignoring the issue that it only comes into effect if there is discrimination.

I know first hand how hard it can be to get a job when you are disabled. I've seen people look at the chair in an interview and wonder how much hiring me will cost them. And I'm sick of it.

30 Days

Sorry for the delay. Work has beat out blogging the last few weeks.

I wonder how many people caught the last episode of "30 Days". For those of you who haven't seen it, the premise of the show is that someone tries to live in someone else's shoes for 30 days. They've done shows of several professions, living on minimum wage, and a few other things over the years. Generally it's decent enough, and interesting to see what living in someone else's life could be like.

Last week, the show was about living for 30 days in a wheelchair. Specifically, Ray Crockett, a former NFL player, tried living the life of a paraplegic. They allowed him to get up and stretch once a day, but otherwise he was supposed to pretend he couldn't use his legs. Generally, I hate these activities. I think most of the time people only see how hard it is, and end up pitying wheelies. But in this case, I think he learned something.

They sent him home without making any adjustments to his car or home. While he didn't face many of the issues with his home and car that many new paras face, he still struggled. His car easily held the nice little chair that he was given. And he had a bathroom big enough to use comfortably. Doorways weren't a problem, but steps were. And so was having to be driven everywhere by his wife (though she seemed more put out than he did). After they brought in ramps and things, he actually had few problems navigating his house, or his car. At the end of the first day, he was close to giving up.

One of the advantages of this program, as opposed to most "try a wheelchair" projects, is that he actually met people who are paras and quads. One young woman is a new quad, still in rehab learning to do some of the basics all over. Watching her progress is clearly an influence in not giving up for Ray.

He also attends a support group of people who are recently disabled. And the thought of "could I really do this if it were for longer than 30 days" is clearly in Ray's mind. He struggles to find a way to connect to his children without his athleticism (he later figures out that this is something of a self-imposed limitation).

Next up, is a meeting with a quad rugby team. The team that was filmed for the movie "Murderball". And for the first time, he realizes that he isn't in as good a shape as he thought he was. These guys were running laps around him, and the look on his face was priceless. Suddenly, these weren't people to be pitied, they were people to be looked up to.

The show mentions the need for disability rights, and links that in with the wounded soldiers returning from Iraq and the issue of stem cells. I wish it had addressed the financial costs of disability a little more. While they did mention that Ray was in a better position than most people because he had the money to pay for ramps and other adaptations to his home and car, I wish they had addressed this more, especially considering the difficulty that many people with paralysis have with getting and keeping good jobs.

While the show continuously uses language that I wish the world would abandon (wheelchair bound), I think overall it presents a good balance. It shows both the triumphs and the challenges that people with paralysis face.

I'll add a link when and if it shows up on YouTube

Wow, you're so brave

I thought I'd blog a bit about compliments. Because for me, and many other disabled people, they can be a little bit mixed. I'm not saying that I don't like compliments. I like to be told that I'm pretty or smart. I like to be congratulated on completing a tough assignment at work, or finishing a particularly pretty piece of knitting. What I'm tired of, is the compliment that I am "brave" or "amazing" for just living my life.

Maybe someone can tell me what the alternative is. I mean, I suppose I could kill myself. Or I could wallow in misery. But neither of those options seem that appealing. Not that I don't have bad days. Who doesn't? But I also have good days. And I don't want to be called brave just because I have days where I'm comfortable in my own skin.

Next time you are tempted to compliment a person with a disability on their bravery, ask yourself if you would say that if they weren't disabled. Especially if you are about to compliment them on just living with the circumstances of their life. We all have our struggles and challenges in life. Trust me, the wheelchair isn't the biggest one in mine.

I'm not brave. I just haven't found an alternative that seems more appealing.

Child voted out of class

So, I ran into this article the other day. And it took a day to write this without wanting to throw the laptop across the room. http://www.tcpalm.com/news/2008/may/23/st-lucie-teacher-has-class-vote-whether-5-year-old/

A teacher actually had a child (who was being tested for a disability and is now diagnosed on the autism spectrum) stand in front of the room while the other children were instructed to tell him why they didn't like him. Then they voted on whether or not to allow him to stay in class. The excuse is that they were learning about voting.

This poor child is traumatized by this and now cries if he is in the car when dropping his siblings off to school (personally I would have pulled all the children out). Sadly, the police seem to not understand the laws in Florida. Section 39.01(2) of the law states that

"Abuse" means any willful act or threatened act that results in any physical, mental, or sexual injury or harm that causes or is likely to cause the child's physical, mental, or emotional health to be significantly impaired. Abuse of a child includes acts or omissions.

It seems hard to argue that this was not abuse.

Let's ignore the fact that the child has a disability, because while it only makes it worse, I'm not really sure how it's relevant. A child was made to listen to why people didn't like him! What adult could face that without being upset. And children are cruel to those who are different.

The teacher claims that she was trying to teach him why his peers didn't like him in the hopes of changing his behavior. And in fairness, many children with autism need help picking up on social cues. But do it privately, not in front of a class, and you certainly don't encourage children to participate. I just can't imagine what this teacher was thinking.

Some people have stated that this is why children with disabilities shouldn't be in "regular" classrooms. Because the teachers aren't trained to handle them. Except that you wouldn't do this with any child. And if you snap without warning, then you shouldn't be a teacher. I know how hard it can be to handle certain children with disabilities, but why not request more help in the classroom if you can't handle it. If you are afraid that you will stoop to humiliating a child then take a leave of absence. Be responsible and get yourself out before you abuse a child.

To read the original incident report go to: http://www.slate.com/id/2192480/

The thrid category

Disability bloggers often talk about the stereotypes of people with disabilities. Generally, they talk about two categories. The pitiful person who is "wheelchair-bound" or "suffering from"... or the "supercrip" who does everything "Despite" their disability. (See http://cripwheels.blogspot.com/2008/05/privilege-of-despite.html) I would like to add a third. The image of people with disabilities as entitled people who just want the world to take care of them.

I'm amazed by it when I encounter this attitude. It manifests itself in the idea that there are people hanging out on disability who don't need it. It manifests in the attitude that people with disabilities shouldn't be in the classroom, because they might use up all the teacher's time and the school's resources. It manifests itself in the attitude that people who ask for accommodations, or mere compliance with 17 year old laws, are being demanding and trying to take down businesses.

I'll start with that last one. The ADA isn't new. It's 17 years old and will soon be 18. I have a very hard time believing that a business can't save $100 a year, and now have $1,700 to make a simple ramp so that I can get up the one damn step to get in. But apparently insisting that it is long past time for these modifications makes me "demanding" and "unreasonable". Sorry, but I just don't see it that way. I'm tired of hearing "it's expensive". I'm tired of hearing that "they just don't know what to do to fix it". The first is cured by saving. The second is cured by asking.

I just don't get it. People with disabilities aren't entitled because they want to be treated like other people. We aren't entitled for expecting minor modifications to allow us to be full participating citizens. I just don't get it.

And people wonder why I hate travelling

I'm just returning from a conference for work. Traveling is tough these days. Traveling with a wheelchair is an experience. Two incidences happened in the process of trying to return home.

I booked an accessible cab (I can use a regular cab, but it requires folding the chair, and it seems to make many of them uncomfortable, so I will often book an accessible cab) for the to and from trip to the airport. The pickup from the airport went fine, with the exception that she got there when the plane was landing and seemed a bit put out that it took me time to get my stuff and get out to meet her. The plane was supposed to land at 2:10 and I was supposed to meet her at 2:30. She got there at 2:10. The plane landed at 2:20. I was out there by 2:35. I reminded her that I had told her the plane was supposed to land at 2:10, but that I had booked her for 2:30 to avoid issues. Not a problem. Then for the trip back I had booked her for 3:30. It turns out that she had booked two of us for that time, and she can only carry one wheelchair. So no matter what, one of us was going to be running late to get to the airport (the round trip is probably 20 minutes with loading and unloading). And, she was late. Very late. At 25 minutes late I gave up and caught a "regular" cab. I just didn't want to wait anymore, and I was getting nervous about catching my flight. I'm not sure when she actually made it there, but I think double booking and being 25 minutes late is inexcusable.

I won't be using her services again. I will be letting the people putting on the conference know about this.


Second issue: I like flying Southwest generally. With pre-boarding, it works out very well for me in that I always get a seat where I don't have to worry about having my knee bumped. I generally find Southwest to be great when it comes to dealing with people with disabilities. The issue was when I got off the plane during my connection. Generally I am last off, but there were some people who were even slower than me holding up the back of the plane so I had a minute and decided to get off (we were late, which had shortened my connection time). I found my chair wedged between the door and the doorframe of the door off the jetway (where they bring wheelchairs and strollers up).

My first thoughts were panic! Wheelchairs are very strong in the ways that they are designed to take stress, but the weight of a door on the axle sideways is not one of them. It's sort of like rolling up a piece of paper. Pushing on the top of the column, it's actually fairly strong, pushing on the side it will break quickly. Thankfully, there was no damage (well, a scratch to the paint, but nothing major). The excuse I was given was that there wasn't room on the jetway. You would have been proud of me, I didn't yell, I just told him that he should have left it all the way outside, and he better pray he didn't damage it.

Ah, the joys of travel. Sadly, the part of travel I hate most these days is writing the complaint letters afterwards.

Defining "Disability"

I talked to someone on the phone the other day and she kept referring to people who are "differently-abled." Can I just say, I hate that term. I actually had to sit down with someone to figure out why it bothered me so much. Maybe it's because it doesn't mean anything. After all, everyone has different abilities. And maybe because it puts the problem back on people with disabilities. Which lead to a discussion of what disability means.

To me, being disabled is not at all about something that is wrong with me. It is entirely about what is wrong with the world around me. I cannot completely adapt to the world around me, and the world around me refuses to adapt to me. Oddly, most people would fine the world an easier to navigate place if it was created to be accessible to me. Ramps with railings are always better than ramps without. Curb cuts are helpful to people with young children in strollers. And how many people trip each year because they didn't notice that step into a store? But the world has not adjusted to accept me. Instead, they look at me and feel pity. I don't want your pity. I want your help. Show up at a town meeting and ask why the town doesn't have sidewalks, or curb cuts, or why the local police station has three steps to get into it. Question store owners why they haven't put in ramps.

Sidetrack: A co-worker asked me if I had tried a restaurant not far from where I work. I replied that I would love to, and I would love it if the next time she went she would pick up an order for me. She gave me a look like I was crazy, why didn't I just get it myself. And then I pointed out that there are two steps into the building. I'm fascinated by watching people growing in their awareness just by getting to know me.

My disability doesn't stop me from doing much. Or rather, it wouldn't if the world was accessible. Some things can't be fixed. Hills will never be my favorite thing, and I'm not expecting to see the world take a giant bulldozer and flatten everything for me (actually, I would be pissed if they did). And snow and ice will come every winter. Though they could plow in less than 2 days. And I haven't figured out how to go back to being a springboard diver (but I'm open to suggestions).

My disability can't be erased by eliminating physical and attitudinal barriers, but it can be dulled to an annoyance. Who knows, someday the medical community might even figure out how to make my pain go away. But until then, can I get a few curb cuts?

Sidewalks

Several recent incidents have reminded me rather forcefully about the importance of sidewalks. For most people, they are a convenience, especially in summer when it's not hard to just walk on the grass instead.
Now, clearly I'm talking about sidewalks outside of a city, because there are usually some sort of sidewalks in cities.

http://www.southernillinoisan.com/articles/2008/05/15/front_page/24458982.txt
http://www.wfmz.com/view/?id=264730
http://www.salisburypost.com/Area/051808-saturday-wrecks
http://www.azcentral.com/news/articles/2008/05/06/20080506hitrun0506-ON.html

Let's start by examining those "city" sidewalks. I'm regularly surprised by the number of sidewalks with massive potholes and cracks. I'm even more surprised by the fact that about half the time, the curb cuts don't line up with the crosswalks. Needless to say, these are obstacles that someone in a wheelchair is effected by. But they also effect people with strollers, and people who drag their feet a little too much. It's just plain odd. Now, the cracks are understandable. Pavement cracks in the winter, and the budget just doesn't allow for perfectly smooth sidewalks (though a few should be worked on before they swallow me whole). But I honestly don't get why the curb cuts don't line up with crosswalks. What's the point of a curb cut at a place where crossing can get me ticketed? Plus, no one is watching for me since they are so used to looking for people at the crosswalks. It's just odd. Move one or the other.

Then we look at the sidewalks, or lack thereof, outside of "cities". I can't get from my apartment to downtown (less than a mile to travel) without riding in the road. A busy road. So I drive. Now that seems like not a huge deal, after all, many people drive short distances (which is a whole other issue). But that assumes that people have a choice. I can drive, my disability doesn't stop me, but for many people that isn't an option. So then what? Do these people stay in their houses for the rest of their life? Do they ride along the side and be as careful as possible? Well, riding down the road can get you ticketed apparently. I don't even know what to say to that.

The truth is that sidewalks are seen as a nice thing to make a town more pleasant. That ignores the reality of the essential nature of a simple slab of concrete. That concrete makes it safer to navigate. Safer to emerge into the larger world. Safer to be a part of the community. So what does a lack of funding for these essentials say to people for whom they are more important than just a nice place to linger?

When it no longer hits you in the face

Pain continues. The good part of that is that I have more time that I can dedicate to writing.

I work at the intersection of domestic and sexual violence and disability. It's a small field, but it fits for me. We recently did a training for people who work regularly with people with a wide variety of disabilities. The training focused on domestic violence, and how they should be approaching it in their work. We were debuting a new exercise that I created.

I created the exercise based off a true story. The woman in the story was involved in creating a video to tell her story. So we borrowed the story and did a role play with her asking for help from a caseworker. We asked the people in the room what questions they had for her, what they noticed, and what they would do next. At the end, we showed the rest of the video, where you discover that the woman ended up being horribly beaten.

What shocked me wasn't that it bothered the people in the room. It moved many of them to tears. While that wasn't my intention, it clearly reminded them of why it is important that we all offer the correct supports so that it doesn't come to that. What bothered me was that it no longer shocks me. Despite knowing that this is a fairly extreme case, I've heard many that are more extreme. I've seen too many videos, read too many case files, and comforted too many people. I've become almost resigned to the fact that violence happens. It isn't that I have stopped fighting to end it, but I've lost the hope that I can somehow stop it before it happens to someone else. I've shifted to worrying about how to help someone in the aftermath.

Some people would say that I have matured, lost the naiveness that so many people start with. My rose colored glasses have been broken under the pressure of too much reality. For me, I accept that it had to happen. You can't have your heart ripped to shreds every time you hear a story. But I mourn the loss of my belief that I can save people. I mourn the creation of the wall I have put up. It is both necessary, and cause for concern, that my heart no longer bleeds with each new story.

Fear

Twice today I got asked the question "are you worried?" Specifically, I got this question from coworkers. I'm in the middle of a really bad flare up. I can't explain how bad the pain is. As an added mental hurdle, before this flare up, I was having an extended period where my knee was behaving itself. So this setback seems to hurt even more.

So am I worried? Yes, about so many things. Every setback carries a risk of losing more of myself. I'm worried that I won't be able to keep up with my job. I'm worried that I'll lose my independence. I'm terrified that my pain will get worse.

Of course, most people's reaction is, go to a doctor. Well, the truth is that I have seen 9 doctors, and they've given up. Forgive me if I don't hold out hope that number 10 will be the lucky one.

Hope

Hope seems like a good topic for a first blog. But this probably won't go as you were expecting. You see, hope is something that I see as a knife. Useful, but painful when you slip. For me, hope is dangerous. It brings with it dizzying highs, and depressing lows.

I should probably introduce myself. I'm 26, and disabled. To be more exact, I have neuropathy. Basically, the nerves in my left knee are damaged and they fire for no reason. Pain is supposed to be an indication of injury, but for me, the nerves went haywire (I'll explain how I got it at another time). There is no cure, and for me, none of the treatments work. Ten years later, I've been using a wheelchair for five years, and for me, it is the right choice. I can walk for short periods of time, but walking too much can cause the nerves to be ticked off, and then I have to deal with more pain. That's probably enough for now.

Back to hope. My disability often moves in waves. I have good periods where the pain is under some sort of control, and I live my life fairly normally. Then I have a flare up, and all bets are off. I just went through a several month long period where things were really going well. I was managing my disability, and I was starting to feel pretty good. I felt in charge of my life again. Then I slipped, or at least my knee did. I fell, nothing unusual, but something went. My high, my hope that I would be able to pull off living alone and being independent took me crashing down. I fell physically, but the fall from hope hurt worse. The flare up has plunged me into doubt over whether or not I can manage to keep my job, keep my apartment, keep my independence.

With the way things are right now, I'll have to go back to trying new medications. Anti-convulsents actually. Most painkillers don't work on neuropathy, and finding a doctor to prescribe painkillers with no end in sight to a 26 year old is tough. But the pills make me stupid. I lose my ability to think, and the intelligence that I have relied on to keep me going slips further.

Each flare up has cost me a dream. First, I was a springboard diver. I loved it, and it was my place, my method, of release and expression. I lost it. The next flare up brought more surgeries. And with it, my free time. School breaks were suddenly filled with doctors visits and my free time was dedicated to physical therapy. Then my ability to walk. After five years on crutches, I gave up, and got my first chair. And suddenly, I was disabled. Getting a chair made me disabled in other people's eyes for the first time (more on this later). Oddly, I felt freer, except for being treated as a second class citizen. Then, I lost math. I know, most people hate math, but I loved it. I loved that there was a right answer, and that if I worked hard enough I could always find it. I loved that if I proved something, it stayed proved. But with the pills that we were using to try to control the pain, and the surgeries, and the stress, I couldn't do it anymore. The horror of realizing that a proof that a month ago was easy, was now beyond me is still with me. I can't explain how scary it was to let go of my image of myself as a capable student. For the first time ever, I had to drop all of my classes. This flare up has the chance to take even more.

I've veered off topic a bit here, but I think it shows how dangerous hope can me for someone with a disability. Because everytime you let yourself believe that your disability is stable, your body can betray you and let you down.

There's also the hope that places will be accessible. I can't count the number of places that have told me that they were accessible, only to arrive and discover that they have no idea what they are talking about. I've made a list of questions to ask instead, but it's clear that they still don't get it. Every time it happens, I get reminded that I am considered a burden. That accommodating me is seen as an added burden. 17 years after the ADA went into effect, I can't go anywhere without checking accessibility. Silly to hope that people will follow the law.

You see, hope sets me up for the dizzying fall, because all too often I feel like I am hoping for something beyond reason. I feel like my expectations are reasonable, and still, I fall.