My Body. My Choice.

Posted on May 16, 2012 by

The first doctor told me not to read or learn more about RSD.

The next doctor told me not to think of myself as disabled.

The third doctor had me do EMGs, MRIs, and triple phase bone scans to make sure I really had CRPS. He was actually a decent one.

The fourth doctor did four unsuccessful needles into my spine, told me that if nothing worked that I would just have to deal with it and walk, and then he stopped treating me after I turned down the option of having electrical cords wrapped around my spine. He also refused to fill out paperwork that would help individuals with disabilities get jobs.

The fifth doctor made me do yet another EMG (and for non-RSD folks it’s a fairly simple procedure, but if you have RSD it’s miserable) to prove that I had CRPS (again), set me up on some sort of trial drug infusion that didn’t work and I mysteriously never heard from him again. He also refused to fill out paperwork. He didn’t “do that type of work”.

The sixth doctor, when grudgingly going in to see if the CRPS was spreading to my right leg, did the EMG on my right leg (it was more than uncomfortable), made it so that it now spasms whenever I try to use it, and refused to give me a script for hand controls saying, “I can’t see anything”.

When discussing a custom wheelchair with my personal physical therapist, another spoke up and asked “why would you need that?” and after explaining she also asked, “well, couldn’t you just use a bike?”

When going to a wheelchair dealer, I parked in the closest spot, walked in with my cane and sat on the first chair available. I was then told that since I walked in I didn’t really need a chair.

Eventually I stopped going to doctors. It was my body they were playing with and I wanted it back. I stopped trying drugs. I stopped trying experimental procedures. Eventually I found a rehab specialist who fitted me for my chair. Eventually I found a dealer who understood how important mobility was to me rather than walking. My GP told me that I could use my own discretion when it came to trying new treatments. He also helped me on my way to getting hand controls. I’ve given up on my canes. I use crutches solely so I don’t have to take blood thinners and use my wheelchair practically full-time.

My body. My choice.

I’m done with being shamed by doctors. I’m done feeling guilty because the public thinks I should be paralyzed to use my chair. I’m done.

I use a wheelchair. I don’t walk. I read about RSD/CRPS on the internet. I consider myself disabled. And you know what, I like it. I’m more comfortable in my body now than I have been in my entire life. I sit instead of stand. Roll instead of walk. I had independence taken from me by doctors who thought they were helping. I took it back.

I’m done with being shamed for my body. It is mine and if there is anything in the world that I’m allowed to be possessive about it is my body.

My body. My choice. My disability.

My decision on what to do with it.

Stop trying to take it away from me.

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No Crips Allowed (Blogging Against Disableism Day)

Posted on May 1, 2012 by

My disability is not an excuse. But ableism sure as hell tries it’s best to keep me from doing things.

I am constantly locked out of buildings. So much that at times instead of getting frustrated, I shrug my shoulders and go ‘oh well, guess I’m not going there.’ When I have the energy, I swear, flip people off, take pictures, and write nasty posts about it. And then there’s people who tell me that I just need to explain about it. Since it is Blogging Against Disableism Day, I’ll take a moment to explain.

I’m FUCKING LOCKED OUT OF BUILDINGS. It is frustrating. One of my friends wants me to go with her to a bead store that she likes but I can’t go because there is a MASSIVE step in which curb jumping isn’t even a possibility. There might as well be a big sign on the door that says ‘No Crips Allowed’, because that step? That’s exactly what it is saying. And people think that that’s okay. That it’s totally okay for a building not to be accessible. They’re saying that it’s totally okay for a building open to the PUBLIC can turn a chunk of the PUBLIC away.

And because it’s an old building, it’s totally legal. And that is FUCKED UP.

I was recently out with a friend, going down the ramp at the public library, and towards the end, we loitered while I tried to convince her to take pictures of the abandoned building across the street, and while we were talking, a car pulled up to the ramp and parked directly in front of the curb cut and just sat there waiting for someone. And when I finally convinced my friend to take pictures of the abandoned building, we noticed the car. We waited for a bit, hoping that the car would realize and move on it’s own. Like that ever happens. It’s nice to fantasize for a bit though. Of course, the car didn’t move, so I ended up trying to get the driver’s attention, I finally did, and the person moved out of the way.

And my friend looked at me and said, “wow, this really happens a lot, doesn’t it.”

It was a statement, not a question. I said “yup” anyway. But to really understand, you would have to be with us, during our hour long outing. In that one hour, my friend had to follow me around downtown, and we had to go through extraneous routes to find curb cuts, sometimes we had to do this while walking in the road, next to the sidewalk, she stayed behind me in case she had to catch me while I tried to figure out how to get over a chunk of curb to get to the ramp on the sidewalk (it was a curb cut with a curb, so basically a slope with a curb), and we often had to cross away from crosswalks (i.e. in the middle of the road) because the area was too broken for me to travel.

In one hour my friend should not be able to understand that it’s totally fucked up with how I have to get around. I shouldn’t have to spend half my time in the middle of the road to get around downtown, especially when I’m half the height of most people! Curb cuts are SUPPOSED to be legal and implemented, but their always so half-assed they barely help anyway. And no, this is so not an argument that we just shouldn’t have curb cuts, that’s ludicrous, this is an argument that we should make things right the first time. Yeah, you heard me.

In fact, here’s what would solve a lot of problems. Now, I know a lot of people are getting in a fuss over “drive-by ADA lawsuits”. Well, here’s the best way to deal with a “drive-by ADA lawsuit”: BE ACCESSIBLE. For real people, it is not that hard. It is not rocket science. And if you really can’t figure out how to be accessible then ASK disabled people. Stop griping about people “lining their pockets” and being a big huge meanie to the poor business man, and just fix the damn things.

And for the love of all you consider holy, if you make the statement, “we don’t need to be accessible because I’ve never seen a disabled person around here’ PLEASE PLEASE PLEASE RETHINK WHAT YOU JUST SAID.

It is unbelievable how many times I’ve heard this argument. And you know what, if you stand at the top of a flight of stairs, and there’s no wheelchair access to the floor you’re on? You are NEVER going to see a wheelchair user come up with their chair. It’s not going to happen. It’s not because we don’t want to come up there, it’s because accessibility-wise, we can’t get up there.

Ableism hurts and it’s people who wield it in their thoughts, with their actions, through their lack of action, with their voices, and with their body language. There are areas that I am not welcome in it. I know it. I am reminded every day. I’m reminded in the moments when I realize private homes don’t have to be accessible and that there are far too many homes I can no longer visit. I’m reminded in the moments when I ask shops to fix their ramps so they’re safe to use and nothing ever changes. I’m reminded in the moments when places remodel everything except for access. I’m reminded every time I try to cross the street.

It’s tiring. And exhausting. And frustrating. I never want to go back to college again because I have no wish to ever deal with the amount of blocked ramps, out of order elevators, inaccessible bathrooms, and the construction that blocks about 70% of the handicap parking spaces. I have no wish to deal with that or go through with that again. Especially because I brought it up. I tried to fight it. I tried to explain. But no one listened. No one heard me.

People will tell me that I didn’t try hard enough. Why should I always be trying harder than everyone else? Why should I always be the bigger person. When people stare or follow me, why should I be the pleasant person?

If I sue, I’m bitter.

If I leave it alone, I’m not trying hard enough.

If I complain, I’m being annoying.

But let me spell it out. These are the things I want:

-I want myself and all disabled people to be able to go into all public buildings and through any entrance that’s open to the public.

-I want us to be able to visit our friends and family.

-I want us to be able to get on sidewalks like everyone else.

It’s not that much. Most people don’t even have to ask for anything like that.

People will focus on a cure for us. On miracle healing or the benefits of the ‘perfect’ diet. They want us to change our bodies to fit the world. That is never going to happen. I’m going to take a leap of science here and say it’s impossible. There’s always going to be disabilities. They’re not going to go away, so we might as well make the world accessible to people with disabilities.

I say change the world to fit our bodies. We’re human beings. That’s what we’re best at. We can change the world. We just need people to understand that it needs changing.

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BADD is May 1st!

Posted on April 29, 2012 by

Blogging Against Disablism Day, May 1st 2012

Don’t forget, Blogging Against Disablism Day is May 1st, 2012! You don’t have to be a disability focused blog to submit. Check out here for more information: Blogging Against Disablism Day

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100 Great Gimp Moments (#3)

Posted on April 25, 2012 by

Guess what!

June 5th, at 10PM(EST) on the Sundance channel, the premiere of Push Girls will air!

I am so ridiculously excited for this show.

Four girls in wheelchairs. Finally, it’s about time us women get some more attention! Not all disabled people are guys. Not that I don’t like Dr. House and Mr. Gold/Rumplestiltskin.

Four SEXY girls in wheelchairs. For me, this is a big one. I know that there’s a bit of debate over what’s sexy and what’s not and how much weight someone should put on beauty, if any, but since there’s an eerily strongheld belief that people in wheelchairs can’t be hot or sexualized, I am all for it.

One of the four sexy girls also dates men AND women. As a queer woman wheelchair user, this is the first time I get to see anyone even somewhat resembling myself on TV.

This is very obviously not a ‘poor pity the crippled’ show. It is so nice to know that right off the bat. I love that the girls are shown going to bars, struggling over curbs, hip-hop dancing, modeling, having kids, etc.

I’m a bit hesitant on some of the language used, ‘inspiring’ and ‘overcoming adversity’ just because it’s so heavily used when people talk about disabled people doing unbelievably ordinary things like grocery shopping. I’m also a little disappointed that three of the girls are paraplegic, one a quadriplegic, but that there’s no one whose disabled and uses a chair from something other than a spinal cord injury. People have such a hard time realizing that not everyone who uses a chair as an SCI and it would have been amazing if that could be pointed out.

But still, this is super exciting. I’m crossing my fingers that Push Girls will be on hulu or Amazon Instant as I have no cable!

And then I just found out today that the Push Girls stars will be at the New York Metro Abilities Expo in New Jersey! While finding that out, I found a clip where an interviewer asked one of the girls if she ever had difficulty. And the girl said, “You mean with walking? No. Walking’s overrated.”

Heck yeah, walking’s overrated.

I cannot wait for this show!

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What About My Wheelchair Is So Threatening?

Posted on April 25, 2012 by

No, really? What is it that frightens so many of you? I’ve said it before, and I’ll say it again, it’s a chair with wheels. A much loved chair with wheels. It’s not a symbol of doom and gloom. But here’s what I want to know.

I want to know why I had to fight so hard to get it.

I want to know why people assume the chair is the problem rather than the cure.

I want to know why doctors would rather me never leave the house and be miserable and in pain, rather than out of the house, having fun or working?

I want to know why people scream at me to USE IT OR LOSE IT!!!!! when I’ve already long since lost the normal function.

I want to know why people wax lyrical about miracle cures instead of trying to fix society to be a bit more accessible. Here’s a hint, a ramp is far easier to create than a cure for a neurological disorder that people aren’t even really certain what causes it apart from minor trauma. Also, a ramp helps more people!

I want to know why you’re so thrilled to see me walking with crutches when it’s all I can do not to throw them across the room because I’d prefer to use my chair.

I want to know why a doctor denied my need for hand controls for my car even though I could no longer drive my car with my feet.

I want to know why a significant majority of accessible apartment complexes are for seniors only. And yes, I’ve been asking if they make acceptances for disabled people.

I want to know why the only way to report job discrimination is to hire yourself a lawyer, one that you ironically can only get if you have money, most likely from a job, to actually sue.

I want to know why everyone tries to deny me things that would make life more accessible to me.

No, really. I want an answer. Anyone got one?

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100 Great Gimp Moments (#2)

Posted on April 24, 2012 by

“Oh god, you’re one of those ones!”

I slammed my caster wheels back to the ground and quickly spun around with a broad grin.

“It’s okay,” my mother said, “she’s got her anti-tippers on”.

“Yeah, it’s pretty awkward going to an urgent care and having explain that no you’ve never injured your spine before but you’re worried about it now.’”

The employee smiled and shook his head.

Apparently, he was unimpressed with my wheelies. But soon enough, he brought me over to the reason I was waiting. Back to my car.

After almost two months, I was finally going back to my car. The parts had come in. The parts were actually installed in my car, and I could finally drive again. He led me back to my car where I just stared excitedly at it.

“Can I get in it?” I asked.

He said yes and I never transferred from my wheelchair faster. The employee explained the push/pull controls and put in a guard for the gas pedal. Then I asked if I could try the controls out. He said it was fine and I backed out of the area and took my car for a spin around the parking lot.

I left my wheelchair behind.

For a few minutes, it was just me and the car. And it was wonderful. Not for the lack of the wheelchair, but because my car had suddenly been made so accessible to me that I wasn’t worried about getting around. I had my freedom back.

Of course, later I learned that they didn’t actually expect me to take the car around the parking lot. Oh well.

I’ve been driving every day since I’ve gotten my car back. And it’s wonderful.

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Moods

Posted on April 17, 2012 by

I’ve been in a bit of a mopey mood lately, and it’s certainly not something I enjoy. It started when I went to a neurologist to find out what was going on with my right leg. I used to call it my good leg, but haven’t in quite some time due to overcompensation issues but more and more recently it’s seemed as if the RSD might be spreading. A common test for RSD is the EMG which is basically sticking needles in the painful area of your body and electrocuting you.

In short, the neurologist didn’t find anything wrong that he could “see” and refused to give me a script for hand controls. At that moment in time, I had felt that hand controls, while not a necessity, having random spasms in my driving foot did not bode well for future safe driving. Of course, directly after the EMG and the denial of any issues whatsoever, my driving foot had completely lost it’s ability to be a driving foot. Whenever I try to move it, it shakes quite spectacularly. In fact, it shakes a bit more than when I try moving my definitely RSD leg which is quite interesting and also quite aggravating.

Luckily, I soon went to my GP where he was very helpful in writing me a script for a driving evaluation and hand controls and I found an outpatient rehab place who taught me how to drive using hand controls and found a place where I could get hand controls installed on my car.

During this, however, I had what I thought were double ear infections, where I would wake up with the room spinning around me. Recently, I learned that I am apparently having some issues with inner ear infections and/or benign positional vertigo. Which quite honestly, sucks. I haven’t been able to sleep a full seven or eight hours in over two weeks. I haven’t been able to lie down flat without the room spinning for over two weeks. The combination makes me a rather miserable person. And that’s not even accounting for the possibility that this vertigo mess might not go away…

And for the last month and a half, I’ve been depending on family members for rides and when you’re twenty-two and living alone it basically means you’re stuck inside and/or waiting on other people’s schedules. Now, I certainly appreciate the family members who have been giving me rides and coming to visit while I’m effectively housebound, but the inability to go where I need to go independently is not something I enjoy.

I had also just started job hunting again and have been in the awkward and unpleasant position of turning down job offers and interviews. After sending out quite a few resumes, this has been quite depressing.

The thing about moods and emotions is that while you can’t just will yourself to change your moods (if we could, we’d all be pretty happy people) we can control how we choose to deal with them. Although probably not the best way to deal with my mood, I’ve been buying lottery tickets and fantasizing about new cars and sports wheelchairs. I’ve also decided that I want to take up tennis and I have an entire list of things to buy if I ever win the lottery…Well okay, I’ve always had a list, but I’ve never gone so far as to buy tickets!

But today started out a bit differently than the past few weeks. Perhaps it’s because I actually slept well for more than two hours. But I decided that I’m not going to let a bit of dizziness stop my life. How ridiculous is that?! I’ve refused to let CRPS stop my life but all of a sudden add a bit of vertigo and I feel like I can’t function at all? That’s completely and utterly ridiculous. Do I want to be dizzy? No way in hell. Do I hope it will go away? Definitely. Am I going to mope and be miserable about it and do nothing with my life? Hell no.

Of course, this decision was easier to come to when I found out that I’ll be able to drive my car again by this weekend…which is pretty freaking sweet. I can start job hunting again, actually make it to scheduled interviews, and do all the basic things on my own again.

It’s pretty exciting.

And I’m pretty happy today.

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