It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Monday, April 30, 2012

"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...

Friday, April 20, 2012

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...

Monday, April 16, 2012

I Can't Believe He Came Here Like That

Today I had the pleasure of making an unplanned trip to Wegmans. Have I ever said how much I like grocery shopping? Well Wegmans is at the top of my list. If you know me and know my eating habits of the last 6+ months, you wouldn't have been surprised to see me buying 6 Green Giant veggie boxes. People always ask me if I need help when I'm reaching for frozen food, being that most of the time the angles that they are placed into the cases make me have to shift around a lot in order to reach them. I only stand up as a last resort, sometimes passing on something that is too high up, as I'd have to place my basket on the floor in order to do so, and picking it back up if it happens to be full is way more of a challenge then reaching the food while sitting down.

I noticed voices to the left of me, a family discussing which veggies to buy, but as I was both heavily concentrating on wiggling free a box of broccoli with cheese sauce and totaling up the cost of my basket, I didn't pay them any mind. Besides, I didn't get the vibe that there were little children staring at me and they seemed too involved in veggie picking to bother to ask me if I needed help (a relief).

Like any good driver though, when I had my 6 boxes and backed away from the case I turned my head left to make sure I wouldn't run into them. Standing there with his parents was a boy around 14 using a reverse walker. I didn't look at him long enough to notice what his clothes looked like, if he was wearing AFOs, or if the hand grips of his walker were red (they most likely are). I only noticed out of the corner of my eye that he most definitely has CP. I was too focused on repeating "$18.71, $18.71" in my head to think I cared.

[image description: the walker with the red handles, although mine didn't have those hip positioning pads]

Except I did care. The first thought that came into my head was I can't believe he came here like that. The next was, no wonder they understood that I didn't need help... Then I wondered why I thought such a seemingly negative thing about the boy. It was totally a transference thing. Did his parents force him to go grocery shopping against his will? Was he insecure and embarrassed, is he sick to death of preschoolers staring?

I would never have gone out in public using a walker without putting up a fight. People might think I'm r------d. People I'll never see again... But that used to matter to me. I wasn't that kind of cripple, and I didn't want anyone thinking I was.

Then on my way home more thoughts came into my head: Did his parents force him there? Did they force the exercise on him? Doctors have "prescribed" grocery shopping to me in my life. Does he not like his chair? Has he used a walker since he was a toddler so that after over a decade he's OK with it? I have used one only here and there. Did he like not walk until he was 10; has he bought into the "people who walk are better, I'll use my chair over my dead body" rhetoric? Been there done that.

Then I felt sorry for him. Wegmans is the biggest grocery store I've ever been to. As I have trouble finding things and often have to walk back and forth around the store or up and down the same aisle three times in order to find things, I have gone there on foot and left not being able to stand for the rest of the day. Does he not have a powerchair? Is he mortified at the thought of his parents pushing him in public? I most certainly was at that age. He doesn't have to go home and collapse tonight. I didn't.

See what I mean, transference? I was having flashbacks to 1999. All I can hope was that they were flashing forward, noticing that I was alone, doing my shopping independently, and wondering how I got there. Did I drive, take paratransit? I actually had rolled the mile and a quarter from the last place I was, and then took the train to the bus and rolled the last 2 blocks home.

Do his parents have more hope for his future now then they did before we bumped into each other? Do they see less dependence for their son and more independence? Do they wonder if I live alone? The only exchange we had was the mom offering to close the freezer door for me as I was backing away "Oh, I've got it," I said for the 9001th time. That was before I saw her son. Neither of us said anything after. Was the kid looking at me in horror, swearing to himself that he'd never be caught dead grocery shopping in a chair? Flashback, 1999: I would have said that exact thing to myself.

I've certainly grown in the last half of my life, as I obviously don't think that now, and for that I am thankful. But it makes me wonder why all these thoughts came into my head so quickly. Why my memories of these things are so vivid, while memories most people treasure, like summer camp are harder to bring to the surface. Is this a shared experience among people who were born with their disability? Because I thought only people who had serious trauma have flashbacks...

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