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.