Have I Been Fooling Myself?

I wrote my Blogging Against Disableism entry in my other blog about how hard it's been to fight for recognition as someone with some sort of unknown chronic illness. I talked about the years of not having doctors believe me that there was something physically wrong. I talked about the feeling of validation when my psychiatrist said that I didn't have a conversion disorder. How good it was to find someone who believed me.

Well, today I was reminded of how much it sucks sometimes when someone takes you seriously. I'm living in NYC this summer and have been having phone appointments with my psychiatrist every week or two. Today she told me that she had things she wanted me to research or think about before our next session. There were various non-disability related things. But then there was that she wants me researching mobility scooters and what it would take for insurance to cover one. For me, that's like another step up on the assistive device pole or something. First time a doctor has suggested some sort of mobility device without my bringing it up first myself. That wasn't the real kicker, though. The real kicker was that she also brought up the idea of my looking into applying for disability. It was like a kick to the gut.

What really got me was that a doctor was suggesting these things. Really for the first time it was a doctor of any type telling me that my physical health isn't going to get better. And that was rough. I've been venting to just about anyone who would listen because I'm not used to this. She also wants me to think about whether I'm discounting my disability by separating disability and impairment. (Yes, I'm an American who likes the British “impairment” vs. “disability” over people first language) Really now I'm just kinda scared. I'm used to fighting for people to listen to me about what life feels like. And while I wouldn't take back a single thing I've told her, I'm scared to know that she's reached the conclusion that things are this serious. I've spent part of the evening almost in tears and I know that when I talk to some of my friends about this, I probably will cry. There are other concerns I have, but I won't get into them here. But I just feel like it's rough.

A Tale of Two Lifts -- For BADD 2

Just about any wheelchair user who has ever been in a building that has been retrofitted for access has come across a platform lift. They are those lifts that really aren’t supposed to go much farther than 4-6 steps. They’re usually open on top and are key operated. In the past couple months I’ve had several “interesting” lift experiences.

Experience 1:

At a taekwondo tournament, there was a lift down the side of the gym area from the upper level where registration, snacks, the entrance to the gym, the accessible bathroom, and where they were selling t-shirts (and other things) down to the floor where the tournament was taking place. The community college that owns gym we were using has a policy where they cannot leave the key in the lift. This meant that every time a wheelchair user needed or wanted to go up or down, we had to find the person with a key and get him to get us up or down. While I hate that places have that policy, it generally doesn’t bother me. This time, however, it did. The person with the key was not easy to reach. He was not within site of the bottom of the lift most of the time and didn’t have a radio or anything by which we could contact him. At one point they had to announce over the loudspeaker that someone needed to use the lift. Because of these problems, the friend I was with and I ended up just coping with the inaccessible bathroom in one of the locker rooms, had to bring our own food, and nearly didn’t get tournament shirts. It was ridiculous. I often waited 10-15 minutes before I could find someone who could find the man with the key. I was not happy. The sad part is that apparently until the last few years, they didn’t even have the lift and you had to go outside and around the entire building to get from the top to the bottom.

Experience 2:

A week after that tournament, I went to Lunacon at the Hilton Rye Town (also known as the Escher Hilton). This hotel was retrofitted at some point to become ADA compliant. As a result there’s a very short lift going up to the bar and fancier of the two restaurants. (there is a back way that involves going through the kitchen) Thursday night I decided I wanted to go to the bar. I asked at the front desk and someone found the lift key. I had a drink and then was ready to leave. There was someone right there with the key. I got in the lift and whoever had the key lowered me down. But then the door wouldn’t open. That’s a common problem in lifts, usually, it means that you are too low or too high. The person operating the lift pushed the up button intending to bring me up a couple inches and then back down. Nothing. The lift wouldn’t budge. Long story short, I spent about 20 minutes stuck in the lift until they managed to pry open the door to get me out since they could not figure out why it would not work. The entire time I was stuck, however, there were people there. They offered to get me food and were very apologetic and helpful. Ultimately, I came away with a much better experience from this than from my other experience. For the rest of the weekend to get to the bar I went through the kitchen.

What makes these stories so different for me is how the people involved handled them. At the tournament, I was made to feel like a burden. I was inconveniencing them so that I could get around. There was a certain sense that because I could not walk up and down stairs, I was not entitled to be able to move freely around the venue. Even more obvious was the impression that I should not be out without someone who could walk up and down the stairs. At one point someone said “just sent your instructor.” I couldn’t do that due to her position at the tournament. And even if I could, I wouldn’t. At 22 I can take care of myself. At the hotel for Lunacon, they never made me feel like it was my fault that I could not get places or like I did not have a right to be there. There was no assumption that someone else could get things for me. So while, I spent 20 minutes stuck in their lift, I’d much rather deal with them and their lift than go to a tournament in the venue used.

I'll be participating in Bloggin Against Disablism Day this year.

Dancing With the Stars

So everyone is talking this year about how Heather Mills is on Dancing With the Stars and the "how are they going to work around her prosthetic leg?" issue. One, I'm not sure it's going to turn out to be as big an issue as the press has made it. Two, I think they made the wrong first step in terms of giving her a partner who is used to working with making adaptations due to physical ability levels past.

What most people do not know is that one of the pros this year has experience dancing with people with disabilities, specfically wheelchair users. It's not listed on his bio and he was not placed with Ms. Mills. How do I know this then? I've danced with him. Brian Fortuna's mother is the AB choreographer who has worked with American Dancewheels Foundation, an American style wheelchair ballroom organization, since it began. For a short time about a year ago, I danced with ADF. Brian, when he was around was part of a two-couple tango I was in. I also danced with him a couple times during training. He's a good dancer both with AB and disabled partners. He also knows how to adapt for physical disabilities. I have to wonder how many pros are that flexible. I think it's unfortunate that Brian will not be given the chance to show his talents on that side.

Of course, I'm now looking forward to the day that they put Stephen Hawking or another celebrity in a wheelchair on such a show, too.

Unexpected Access

Sometimes it's the unexpected access that makes all the difference. There's a historical recreation/re-enactment type museum near me called Old Sturbridge Village. It's set up to be an 1830s New England village with original buildings and such. It, like many similar places, is on the brink of running out of money and closing, so I figured once I starting using a wheelchair, that it would be out. This made me sad because I grew up loving this place. I went quite a few camps there and even had my birthday party there once.

OSV has these lovely cookies and last fall I started craving them. So I convinced one of my friends to go with me. I figured we'd go to the gift shop and not do much else. Well, that didn't exactly happen. I decided we might as well try the village. Surprise one was that as a wheelchair user I got I think it was like half-price admission. I don't always approve of such things, but since the village isn't completely accessible, I appreciate the sentiment a little more. Surprise two was an access map that not only marked building access, but how steep paths and roads were at different points. So we went to the village and didn't do much, but had fun.

In January, a friend and I were looking for a place to meet while she was home on winter break. OSV was half-way between us so we decided we'd at least start there and then maybe move on. It was rainy and cold; really not a wheelchair friendly day at all. My friend switches between chair and cane and had brought her cane. But we went anyway. And it was fabulous. We could get into quite a few more buildings than I had realized. Also, there's a horse-drawn shuttle type thing that does a loop out past some of the further out buildings. We got out that far on foot/wheels but were getting tired. The guy running the shuttle happened to be aroudn and he asked if we wanted a ride. As it turned out, they have a ramp so that I was able to get on without transfering out and lifting my chair on after me. So that was the biggest and best surprise. The ramp is steep. I wouldn't have gotten up it on my own, but it's there.

I am so impressed that this place which doesn't have much money has worked so hard to make itself accessible to everyone. Not ever building is and second floors aren't except for things such as the tavern, but I know some of the buildings I went into, I wouldn't have been able to get into 5 years ago if I had been using a wheelchair then. I really want to hold this place up as an example of what you can do if you want to. Because I doubt they had to. And so many places with many more resources hide behind money as an excuse when it's not at all that. And it's so sad that such a place will likely be closing before I have kids I can take there. So while it's around, I'm spreading the word.

Eastwood & the Humanitarian Award

Something that I have noticed has been ignored by the disabled community lately (possibly because it's not been well publicized) is the fact that Clint Eastwood will be the first recipient of the Motion Picture Association of America's Jack Valenti Humanitarian Award. The head of the MPAA, Don Glickman, has been quoted in this BBC Article as saying that Eastwood has shown "decency and goodness of spirit" in his movie making. Obviously, Glickman must not be disabled. Or is committing suicide if you have a severe disability decent as one might surmise from Million Dollar Baby a decent thing to do?

Also, in my mind, to receive a humanitarian award, it should be not only inside your field, but outside as well. When I received my high school's humanitarian award, it had at least as much to do with things I had done with no affiliation to the school at all as it did for things I did at the school or through the school. This brings me, again, back to Eastwood. His track record when it comes to disability rights leaves more than a little to be desired. There is, of course, the fact that in 2000 he fought heavily when his Mission Ranch resort was sued for ADA violations. Somehow he claimed he hadn't known that things were in violation. The ADA had been around for almost 10 years at that point; one could have thought to check for them at some point during that time. In fact, according to the ADA, one was required to.

I'm not saying that Eastwood hasn't done good things. His recent word regarding Iwo Jima is supposed to be superb, but I see humanitarian awards as something that should be given to people who are general humanitarians, not just where they can pick and choose. Until he shows to me that he believes that all people are humans, I will not count him as a legitimate humanitarian award winner.

I have another blog that I will not link here, but I needed something public. This is really going to be able disability issues and concerns. Hopefully, I can use this to put my feelings about various issues both here in the US and other places.