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?