"It isn't visitable"

I've been trying to get online to write this for a few days. On Thurs I came back from my 6th ADAPT National Action in DC (which I'm pretty sure I won't write about, so here are the official action reports) dropped my stuff off in my living room, and left again. I had 2 appointments and somehow managed to time things perfectly. My 2nd appointment was with my new art therapist, which might have been a mistake, because anyone who has ever been to a national action knows it's impossible to focus your brain on anything else over the next few days, other then how much we kicked ass (non-violently of course). She might have thought I was manic, I dunno.

Anyway, a standard activity to start art therapy with is "draw a house, a tree and a person," so the little I was able to focus on doing art, that's what I did. There's a lot you can tell from these three images, not that I know exactly what that is, but if the tree is full of leaves, has bare branches, fruit, a hole in the trunk, that all means something.

My whole life, all the houses I've drawn have been a variation of the house on the right. That isn't the house I grew up in, but it's down the street. Thanks google images. Thanks real estate websites. The house I grew up in had a 2 car garage, so the lines coming off both sides of the house were different, but the main house, the 2 upstairs windows, family room window downstairs left with bushes out front (ours were bigger), steps on the right that lead to the front door, all that is the house I grew up in. Complete with those railings, which were actually a selling point my parents once told me. They didn't have to install any for me.

I'm lucky it was such any easy house to draw. I was compelled to look it up, being that I don't have any pictures of the house and I thought I must have mis-remembered how square it was. I didn't. Looks a bit like a milk carton doesn't it? You know, those little ones you got with your lunch in elementary school...

Usually when I draw a house it's just that milk carton shape with the 2 upstairs windows, curtains instead of the fake shutters, and the front door ends up in the middle, so the family room window is usually missing because of lack of space. About 50% of the time the bushes are there. The garage never is, because years and years ago I decided garages were too hard. I think it had something to do with the roof line. Nothing blog worthy really, you're probably bored, but I had to set everything up you see.

What is blogworthy is the person. When I draw houses I always start with the grass, then the house, then the tree, then the... OH CRAP... Being that I'd literally just gotten back from DC my first thought was to draw the accessible parking spot guy, but all I'd drawn was grass, no sidewalk. Pushing on grass is impossible, at least to me. When I was done she asked me if I wanted to draw anything else. I said no. I wasn't interested in the drawing, didn't like it because of the chair on the grass, but looking back maybe I should have added someone in a powerchair. That way he could have gotten a tow :D

The next thing she asked me was if this looked like the kind of house this person would live in. "No," I said, with kind of a gasp, "it isn't visitable!" Then she looked at me with a look of "HUH?" while I said to myself, "I drew a two story house with steps... why...???" Forget about the fact that I lived in that house with the steps for 19 years and kept my chairs in the garage. This guy's a full timer, and this house doesn't even have a front walk, so forget about an accessible garage.

"Single family homes aren't covered under the ADA, because they're private property..." I said to her. "We've been trying to pass a law for years that says all new construction has to have one no step entrance (front, side, rear, garage, doesn't matter), and a half or full bath on the main floor with a wide enough doorway and walls strong enough to handle grab bars should you choose to install them. That way it's visitable."

Except then I looked at my drawing (man I wish I had it) and realized that it didn't have any steps outside. None. Not one. "Well, wait... and it could have a stair lift..." I realized that none of the other 100 "milk carton" houses I've drawn in my life have ever actually, in reality, had steps outside. Steps are too hard to draw a front view of. This fact had not however prevented me from adding steps to all the other 100 milk carton houses in my mind. Because, you know, all houses, including the one the "milk carton house" was based off of, have steps. So like of course this house has steps! Except it doesn't! Like I said, I wish I had it to post. I had a hypothetically barrier free environment (she told me to go back and add sidewalk and I didn't feel like it) and I had unconsciously added barriers to it.

What does that say about me? What does that mean? Does it say more about society, more about overt ableism then anything about me? Is it an outcome of internalized ableism and oppression, or is it an outcome of realism, my realistic view of society? I've been mystified for 5 days...

Access and Hypocrisy

I feel like I must preface this post by reminding readers that I am a die hard ADAPTer. My commitment flows through my veins 24/7, even if my constant depression and other issues make it almost impossible for other people to see it. However, two things happened over the course of a little over a week that I feel have questioned my credibility. Right now I'm up not able to sleep because of a few things, one of which is that I'm trying to reconcile the values I've developed as an ADAPTer with the positions I'm putting myself into.

The first thing that happened was that over the winter I decided I wanted to see an art therapist. I never liked doing art in my youth; my visual and fine motor deficits causing me to put up walls due to frustration, but after I spent 7 weeks in the summer of 2007 taking Intro to Art Therapy, art became my #1 strategy for avoiding my overwhelming anxiety. I say avoiding because instead of facing my anxiety head on I would spend hours with crayons and markers in an effort to ignore/push aside how uncomfortable I felt. This actually made my anxiety worse.

I created some great art though, and while my art will never hang in a professional gallery, I can no longer say I am "bad at art." I haven't touched my art materials in 2 years though, which is a good thing. A conversation with a friend once went like this:

"You want to come over and do art?"

"I'm not in the mood."

"You don't have to be in a good mood to do art."

"No, I have to be in a bad mood."

However, I noticed some patterns when I was doing art and I don't understand what they mean. I've been wondering all these years and finally over the winter started seeking out an outpatient art therapist.

The second thing that happened was that I decided to pursue an opportunity at work. There has been a recent staff turnover, and I can, most likely, pick up a few hours a week helping to develop our transitioning age youth program, which in 3+ years has never gotten off the ground. I've had some great ideas that the people running it agreed were good, but then nothing happened, and I decided it wasn't wise of me to strong arm them. I decided I wasn't willing to work on this unless I was being compensated.

What do these two things have in common? Both are located in inaccessible offices. The art therapist works within a group which is located in an older building, and her office has 1 step outside. Just 1 -- it'd be easy to ramp. If I ignore the issue, I have to be careful of where I am coming from or going to. I obviously can't bring my chair with me. While I have that "luxury," for lack of a better word, of deciding to do this, I don't feel right about it. In the 5 years I have been seeing my other shrink I have gone to appointments from places like our state capital, or gone straight from her to an ADAPT mtg, lugging bottles of soda on the back of my chair.

The organization I work for operates programs in 5 locations. I already work at 2 of them. One I bring my chair to 6 months out of the year because it's so close to where I live that rolling to work is faster then waiting for paratransit. The other I have brought my chair to twice over the last 10 months, both times because I was coming from somewhere. Out of all 5 locations, my new position, should I choose to ask for it, will be located where our executive offices are. The only location that is completely inaccessible. Not only are there steps up to both of the outside doors (one without any railings), but the main floor, the one where all the programing is, is divided in half by 3 steps. In the two years I have worked here I've rarely had to go there, so I decided not to pick this battle, but if I'm going to be working there regularly, I really don't feel that I need to not go places because I won't be able to get into work afterwards.

The easiest thing to do would be to state that they must move the program, however I don't feel like this would be fair to my new boss (I'd have 4). I'd only be working a partial shift, but with the staff turnover her hours are being expanded so that she's working a full shift that day. If we move locations it cuts into her hours. So I guess that means that I ask (demand?) that ramps be installed. The thing is that 1, I'm not sure it is possible to ramp the inside steps, meaning that if we ramp one set of the outside steps we'd literally be doing half the job, making only half the place accessible. I could get out of my chair and struggle with the inside steps, but not everyone can. A half job is not OK with me. The other thing is that they're not legally required to do this. I have a good enough sense of our finances to know that they can claim "undo hardship." Is it my responsibility to find a way to get ramps installed at a discount, or theirs? This I don't know.

My first inclination was to ignore both of these access issues, push them to the back of my head and pretend that they're OK. I've realized that I can't bring myself to do this, which is actually a relief. I won't spend all my time feeling like a hypocrite. I won't spend all my days feeling like a sell out. I won't be limiting how I plan my days. However if I bring these issues up and they can't be resolved, am I limiting myself in other ways? Am I limiting my ability to knock down my psychological barriers? Am I limiting my ability to develop valuable work skills? I'm not OK with that either.

Which is leaving me at a loss, and is contributing to my insomnia. Anyone know where I should go from here? That is if you've gotten this far...

All Chairs Look Alike (an Almost Wordless Wednesday)

[Me in my Quickie in 2007 in Israel, left, and in my Jazzy on the train in Chicago in 2009, right]

My Jazzy broke on the 14th. My back right wheel came off. I need to write a post about it. This is not that post.

Fast forward a few days. I run into my across the hall neighbors while I am on my feet. "Hi Cheryl, how are you?" "Not good," I reply, "My chair is broken."

Fast forward a day. I have a habit of sitting in my doorway in my Jazzy while on the internet. This time I'm in my Quickie which I have gone periods of over a year without using. It's a piece of crap. Across the hall neighbor walks out of her apt with her laundry. "I see you got your chair fixed," she says. "No," I say, "This is my other one."

2 nights ago coming home from Annapolis I walk into the lobby of my building pushing my Quickie from behind. The woman working the 4-12 shift at the front desk goes "I see you got your chair fixed."

Apparently all chairs look exactly alike.

CP Alters Your Cardiovascular System

About a month ago Ellen wrote a post about how max is super skinny. Max has oral coordination problems and she was wondering if he isn't eating enough. I responded that a high metabolism comes along with spasticity and went into detail. I wonder what people think when I write comments that are longer then the post. The tighter your muscles are the more calories you burn. Even just sitting on your butt. I learned this when I had my first gait lab experience at Gillette. Tight muscles need more oxygen and that means your heart has to pump faster to keep up with that increased need, and well you can eat a whole lot. It explains why my resting heart rate is in the high 80s-low 90s.

Before I had my big surgery I ate TONS. I don't know how my mom kept up with the grocery bill. I also have a former roommate that ate bowls of ice cream for dinner and chugged Hershey's syrup out of the bottle and couldn't gain an ounce. She's super skinny, has been always. This isn't to say that someone who has increased spasticity can't gain weight/be overweight. That is an equal probability it seems from what I've gathered. If you have a harder time getting around, especially if you're a full or part time wheeler, you just don't have the opportunity to burn it off. It all depends on many factors. This drove me crazy for years, but now I just don't care anymore.

This brings me to a question I've been meaning to pose on here for a long time. I run. I LOVE TO RUN. I've been told it's bad for my joints, that I put 3X the force on my ankles as opposed to able bodied people, but I don't care! Except, well, I've always wondered if I'm doing damage to my heart. The heart rate monitor on the treadmill often reaches 200bpm and I've always assumed it's actually higher--that the machine just doesn't go that high. My thinking though is that you're supposed to double your resting heart rate when engaging in cardiovascular exercise and being that my resting heart rate is 92 lets say and that it's oh, about 124 just walking at 1mph, I SHOULD keep my heart rate that high.

I breathe so heavy, get bright red, guzzle tons of water, take what seems like forever to get back to a normal rate of breath. Is that ok? Don't just say no, substantiate your opinion. Any cardiologists read my blog? I'm wondering if the heart just isn't designed to work that hard and if I am going to wear it out at a young age. Should I be worried? Or am I paranoid as usual?

Click Here, There & Everywhere. Or, the Curse of alltop.com (with a Bit of Britan's Missing Top Model Mixed In)

I want to thank DeafMom for the breaking news that alltop.com has a new disabiity page. Click the logo to be directed there. I'm not being scarcastic at all. Alltop is AWESOME (do you think that will get me moved up the list?). Hopefully in a few days, as people figure out that the page is there, we'll be getting more traffic here. Besides just www.disaboom.com, there are 9 on-site Disaboom blogs listed (including mine & DeafMom's), as well as 4 off site blogs written by fellow Disaboomers.

But I have a problem with Alltop. It works too well. I LOVE IT! I don't really read offsite blogs other then on carnival day. It's too burdensome to click here, there, and everywhere. Disaboom makes it so easy. A bunch of great blogs all in one spot. Here comes Alltop and it does the same thing. WHOO HOO! How great!

Right... until you actually start using Alltop. It sucks you in like a vortex, and it hasn't even been around for a week. Alltop certainly works. Yesterday through Alltop I discovered a great blog by Patrica Bauer, Disability News. It's also a very comprehensive site. A one stop shop of all things great in disability news. By all, I really do mean all. Alltop lists your last 5 posts and an excert from each one. Patrica's last 5 posts were all from between 6:04 and 7:47 this morning. And they all sound incredibly interesting. Now how is a girl supposed to keep up with that? Especally in the fall when I have a jam packed schedule.

Here comes what I am going to call the "click here phenomenon" or maybe the "If You Give A Mouse a Cookie phenomenon." You see, all I did was click on the folder in my bookmarks toolbar labeled Blog Roll. From there my first site is Alltop Disability. Seems innocent enough. Except that once I was on Alltop I then clicked on Patrica Bauer's blog. The first post listed was about the new British reality show Britain's Missing Top Model. Under her Headlines Column is listed a link to another post of her's that links to the youtube video below. In the very beginning of the show there is a voiceover from one of the judges. “Disability has a natural place in life, so why shouldn’t it be a part of fashion?” That certainly caught my attention. So of course I was compelled to watch the entire 1st episode, contained in six different parts.

The video is not captioned even though there are 2 deaf contestants. That pisses me off.

One of the contestants is a part-time wheeler. You'll notice if you look at the end of part 5. For most of the show she was walking, and then all of a sudden she rolled in to meet with the judges. I did a double take and had to rewind it. There was no mention of it in an interview or a voiceover or anything at all. All I can say to that is YES!!! If you're a walkie or a full-time wheeler you'll never feel what I feel, being that I have an ever changing combination of crutches, AFOs, UCBs, my Jazzy, and my rarely used Quickie. In the summer I like to wear my Naots and then use absolutely nothing at all. You see, as most of you know, to the AB world disability is black and white. But in addition to the "people with invisable disabilities are lying" crap is the "people only walk or don't walk" crap. The "sometimes walk" thing doesn't exist. People don't know what to do with it. So the fact that a part-time wheeler is getting TV exposure, and that it just is what it is, does fill me with a bit of glee.

From youtube I then went to the show's site because I was curious to find out what this Disability Bitch thing was. From there, I clicked to see Miss Bitch's blog. I read about how Disability Bitch loves Chinese disability awareness. Not sure how I feel about that. I also became her fan on Facebook. And then somehow, I went to check out Spastic Fantastic, by Laurence Clark. In that post Laurence linked to a 2003 Ouch! survey of the 10 most offensive words. Can someone please explain to me what a window-licker is? I was about to go off on a tangent about the word special, but that deserves it's own post.

Alltop became my "cookie" today, and I'm sure I had better things to do. What am I supposed to do with Alltop then? Pretend it doesn't exist. I can't do that, I like it too much, and I like blogging too much. But it is certainly a problem for me.

Accessible/Universial Design: Somebody Actually Gets it!!!!! (WOOT)

I'm surprised that I haven't come on here and ranted and raved about the gym at all. You see, the gym was open even after finals were over, but then the Friday before summer school started was the last day that it was open--until further notice. They were doing "repairs." I went there the first week of summer school, found out, and left. Somehow I heard it was opening back up the following Monday. So that Tuesday I got in my Jazzy and sped over, only to be told by someone in campus rec to try back early next week. I had really been looking foward to a good 2mi run that day. . Instead of wasting my time changing and going over there, last week I got smart and called first. "Try early next week." AAARRRGGG. Seriously? Can't you tell me anything better then that? It had been so long since I'd gone for a good workout (my own fault) that I didn't know what I was going to do. Have a temper tantrum maybe? I NEED TO RUN!!! I was starting to lose faith that it was ever going to open back up.

So the other day I went on the campus rec site. It said it was opening up yesterday. I was still a tad bit skeptical, so yesterday morning I called again. "Will the gym be open today?" "Yes, yes, it will be open at noon" (regular summer hours). Insert happy dance.

I went today right after class. Trust me when I say that it was well worth the wait. When I got in there I parked my chair in my usual parking spot and then my mouth hung open. Nothing was "different." They hadn't done any repairs at all. But where was half the stuff? It was missing. Where did it go? All I saw was empty space. Huh???

It took a bit for it all to sink in. Wait a minute! The front desk is in a different spot... It's a new front desk... It's a lower front desk... The front desk is wheelchair height! I'm not a full-time wheeler, I don't work out in the chair ever. I always get out. But I can still appreciate the awesomeness that it was. And you know what? Now that the counter is lower, the desk attendant doesn't have to stand for the whole shift. There's a chair there. I'm sure they appreciate it. Why look at that... accessible design benefits everyone.

The first thing I always do when I work out is get on a recumbant bike. It loosens my bum knee enough so that it can do everything else I want it to do. They're upstairs and I'm always lazy and use the elevator to get up there. My Dr would rather I use the stairs I'm sure, but my view is that I'd rather save my energy for the workout, not waste it on the stairs. Hmmm... was there a bit more room to get to the corner where the elevator is?

Get off the elevator. WHOO... where did all the empty space come from up here? Well some absolute genius decided to turn all the cardio around so that they faced long ways instead of short ways. Now instead of 5 short rows of cardio machines there are 2 very long ones. Everything was so far apart. By shifting all of the machines 90 degrees it created so much more space. I counted the floor tiles. 3 tiles between the back of the first row and the front of the second row. I wish my eyes didn't suck. I wish my brain had the capacity to interperate distance. I wish I had even half a clue how big each tile that is. Minimal clearance under ADA guidelines is 36in. I'm pretty sure each of them is more then a foot. You have no idea how frustrated I am that I don't know.

Because they moved the cardio, they then had to relocate the 4 TVs they had up there. Before, when the machines were short ways the TVs were too small for anyone in the back to see them. With machines only 2 deep, everyone can see now. For those that are people watchers, instead of the machines facing a wall, they now face the balcony so that if you don't want to watch TV you're welcome to watch everyone lifting downstairs. There are mirrors on the wall directly behind where the cardio stuff is now. That's the area set up for sit-ups, push-ups, lunges, etc. Because the cardio's been moved, there's more room back there. What's that you say again? Accessible design really does benefit everyone. I'd like to note that there's still the same number of machines up there. They didn't get rid of any.

Then I went downstairs to lift. Why did they flip everything around so that the free weights are cloesest to the entrance and the machines are over at the other end now? *Lightbulb Moment* Full-time wheelers are less likely to transfer to machines to work out. Free weights and the 2 cable machines (I heart cable machines) are much easier to use from a chair. Putting them closer to the door makes them easiest to get to and puts you closer to the desk if you need assistance. And what does anyone else care? Nothing's missing over there either. As I walked through that area to get to a good spot to do my floor work, I tried to count all the floor tiles every time there was a change in distance between things. Some things were apart by 5 tiles, some 6, some so far apart I lost count. Oh HOLY COW is the clearance amazing over there now. If you're AB and hurt yourself and am hobbleing around on crutches, that doesn't mean you can't work out you upper body. All of that clearance makes it so much easier to hobble.

I did some floor work right between the free weights and the machines. After I got down, but before I got started, I scaned the area. Did they get rid of any of the machines to make that extra room? Everything was in a different spot. Where's this? Where's that? Well this is over here, and that's over there. All machines present and accounted for. Again they managed to make things more accessable without getting rid of a thing. All machines seem to be at least 36in at least on one side, if not both. Maybe I should take the chair for a spin to check that out for sure? The only machine completely inaccessible is the chin dip thingy. It's blocked by a support beam from the balcony. But no wheeler can get up on that thing. I can't get up on that thing.

Is the whole gym accessible? No. Besides the chin dip, the 2 very small rows of cardio downstairs are still rediculously close. But to seperate them would mean completely blocking all access to the elevator, or stealing clearance from the free weights. Leave them where they are. I'd rather have elevator access and extra clearance. There's enough cardio upstairs.

I've had more then a few gripes with this school through the years. There are things that they just don't get. Lately, people have made my blood boil a bit. This was nice to see for a change. Campus rec got a new director over the winter, and my understanding is that no one asked him to do this. My understanding is that they weren't reported or anything. My understanding is that this was one of his first orders of business. My understanding from talking with disability support is that he initiated everything. Can I get a cheerleader with pom poms in a short skirt who can jump high in the air and cheer? Somebody gets it finally. Accessible design benefits everyone and doesn't take all that much effort or money. The only new thing they got was the lower desk. And what's moving 4 TVs in the scheme of things?