Things I've Learned

I flew. Those of you with disabilities are probably already cringing, but it wasn't bad. All in all, no major problems. The only damage to my chair was a nick in one of the stickers on my wheelguards. A big old nick right in the middle of the "Knit Local" sticker that my local yarn shop gives out. And the slightly annoying process that US Airways has put into place where they fill out a sheet of paper that has your disability needs on it. And then they have you give a copy to each person you encounter (ok, gate people and flight attendants). Still, I got asked at least twice for each flight if I needed an aisle chair, and several times they tried to call for one of their wheelchairs. No thanks, I brought my own.

But I went to a conference on Crime victims with disabilities. I know, it doesn't sound like a happy conference, and in many ways it isn't one. But it is uplifting in a lot of ways. To hear stories of people who have survived, and succeeding in pressing charges is wonderful. To see law enforcement and other members of the criminal justice system learning about this critical issue was encouraging. And every bit of this conference reminded me why I do this work, and why I fight so hard.

On the last day the Bureau of Justice Statistics released a major government study on the victimization of people with disabilities and Deaf people. http://www.ojp.usdoj.gov/bjs/abstract/capd07.htm
Except there are a few major issues with the studies. The biggest ones in my opinion are that they exclude anyone living in an institution (which includes some group homes), and they were not able to make communication accommodations (they were done by interviews, so they were able to simplify and explain language, but this still would have excluded some people). These are major drawbacks, because the study shows that people with cognitive disabilities are some of the most vulnerable. And yet their study design excluded many of those individuals.

Still, it showed that people with disabilities are roughly two times more likely to experience crime than the general population. So to all the people who say "but we never see a person with a disability here" I say, "look again, because they are out there."

Bowling

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

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

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

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

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

Are you really?

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

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

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

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

Are you prejudiced?

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

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

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

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

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

Give it a try!

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

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

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

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

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

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

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

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

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

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

Snow

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

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

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

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

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

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

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

Here's the story:

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

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

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

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

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

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

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

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