Sometimes, You Have To Be Confrontational

Dave Hingsburger recently wrote a post called “Why I’m Not Telling You About Today” (http://davehingsburger.blogspot.com/2012/08/why-im-not-telling-you-about-today.html) and in it there’s a section dealing with positivity and anger. He writes:

“Being positive, or optimistic, on the other hand, is probably a good approach to life for many, it is for me. But being positive isn’t the same as being complacent, or as being a doormat. Being positive isn’t the same as accepting less than the best or being comfortable with the status quo. Being positive, for me, is a general frame of mind that doesn’t preclude anger, or frustration, or even outright annoyance. Alternately, being angry, or frustrated or annoyed, when there is cause, doesn’t mean I’m not a positive person.”

He says that he believes in the power of anger. I agree with every little bit of his post. I do consider myself a positive person these days. But that doesn’t mean that I don’t get angry. It doesn’t mean I shouldn’t get angry.

Recently, I was told that I need to watch my tone and be nicer to people. That I am the one who should be the bigger person because that would mean I’m the better person.

People seem to have this theory in my head that being the bigger person means being quiet, respectful, and being polite when people walk all over you. Quite frankly, I consider that a bunch of bullshit. Like Dave describes, I’ve often started off with being nice, quiet, calm, and “reasonable” but doing all of those things rarely gets people to treat me decently.

It’s only when I raise my voice, when people realize there might be a problem. It’s only when I refuse to take “no” for an answer that people suddenly start coming up with solutions. The other day I went to the mall and a car parked in the hash marks of a disabled space, blocking in two legally parked cars and the only curb cut that would keep me out of the middle of the road in the pouring rain. I tried to get through, but I couldn’t fit. No one in a wheelchair or even with a walker or crutches would have been able to fit. After trying to slam through unsuccessfully, I had to go through the middle of the road to get inside. I went to the security desk and calmly explained my situation and pointed out that it was a hazardous situation for any disabled person. Security shrugged their shoulders at me and told me they couldn’t do anything.

It wasn’t until I started yelling and swearing that they took me seriously. It took me being a thorn in their side to get them to do something. They could have done something. They just didn’t want to. Not until I was a bitch.

One night a car pulled up to me while I was on a walk. I ignore them and keep going. So the car beeps its horn at me until I finally turn around. Irritated I tell her that it’s creepy to have cars coming up to you at night to talk. She tells me she doesn’t understand.

It’s not until I yell “go away!” that she leaves me be.

All of a sudden, I’m described as confrontational. Angry. Bitter.

All because I’m tired of taking ‘no’ for an answer.

I’ve finally found myself in a situation where I’ve finally gotten comfortable with my disability. I have pain 24/7 but I’m learning to deal with it. I have roommates who treat me like an ordinary person. I have a job with employers who treat me like an ordinary person. I go to Karate as much as I can. I’m starting to volunteer with a service dog group next week. I played basketball for the first time since I was a teenager the other day. I’m considering trying horseback riding. I’m happy with where I am in life right now.

So when someone tries to deny me access, or when someone tries to invade my personal space, you can bet I am not going to be happy. I’m not going to be silent. When I am silent, people mistake it for acceptance.

And I want people to know that I don’t accept crap. If I have the energy and ability to stand up for myself and other people who want entrance into things, then I’m damn well going to do it. And I refuse to stop. Because this isn’t just my life. There are other people with disabilities who are having a hard time, but they’re quiet because they’re too scared or in too much pain or out of energy.

I have the energy and ability to fight. I’m not going to stop.

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How Auti Angel, the Abilities Expo, and I Changed My Life

I haven’t written on this blog for quite awhile. I’ve started countless posts to only give up and decide I’ll try again on another day. You see, something big happened and I’ve only just realized exactly how big.

Back in May, I went to the Abilities Expo in New Jersey (The New York Metro Abilities Expo to be specific), and there, some amazing things happened. First and foremost, was that I met Auti Angel (one of the stars of Push Girls and creator of the Colours N Motion dance team). While she was there I asked her about how she got her first job after her accident.

She talked about her dance career and how her doctors told her that she would never dance again, but she proved them wrong. And then she told me that all she could really tell me was to follow my heart.

Now, it’s pretty standard as far as advice goes, but hearing it from someone who is following their heart and refusing to let people tell her no, makes a big difference.

I had come close to giving up. I was working in a borderline scam job, answering phones, cold-calling, and doing absolutely nothing physical. Somewhere along the line, I had slowly begun to believe that I wouldn’t be able to do much more than a desk job. And the only type of physical activity that I would be able to do were those that were specifically adapted for disabled people.

I hated my job, and I had only been going for two weeks. I was terrified of quitting because I couldn’t figure out who would want to hire me and I didn’t want to lose the first job I had in years. And as I’ve mentioned before, I missed martial arts.

At the expo, I found that products were created with people like me in mind. Instead of learning how to adapt to everything on my own, this was a place that adapted to me. I don’t think most able-bodied people can really understand what that meant, because everything is already adapted for able-bodied people. The wheelers outnumbered the walkies, so most people were at eye-level for me. And it was amazing to talk in person about similar issues that we dealt with. And while no one else really knew what RSD/CRPS was, no one shamed me for my use of a chair.

I stayed at the Expo for two days. I quit my job over the phone the night of the first day. I decided that I wasn’t going to settle. I didn’t know how I was going to find a new job or what exactly I was going to do, but working somewhere I hated just wasn’t going to do for me.

The second day of the Expo I went to Auti Angel’s Colours N Motion dance workshop. Which was amazing of course and a blast. I’ve always loved dancing, it’s not something I’m particularly good at it, but it’s always been a close second to physical activity I love (after martial arts). And while practicing dance moves (and failing quite miserably, co-ordination is not a strong suit of mine), all I could think was how much I wanted to be doing Karate moves.

After the Expo, I slowly became more active. I left the house more often. I applied for jobs that required physical ability. I bought a tennis racquet and tennis balls (that I have yet to use of course). Soon I got a job. And then, towards the end of June I saw that my old Karate school had a women’s self-defense workshop. I asked if there were any spots left open, and the instructor said yes and that he hoped to see me there.

I went. And while this might not seem like a big deal to most people, I had tried to go back to Karate more than once, and more than once, I turned the car around and went back home. But this time was different. This time I had Auti’s voice in my head. This time, I thought of what Auti would do.

She’d keep going.

And then I thought of what I would do had I not been disabled.

I always wanted to go back. I never really wanted to stop going in the first place.

I decided to live with my CRPS, as not to let my body become a constant war ground. I had forgotten that the biggest reason I decided to live with CRPS and not to constantly seek experimental medical treatments was because I would rather use that time to live my life.

So I kept going.

Because that’s what I would do.

The self-defense class reminded me that I am still capable. I signed back up for Karate that evening. These past few weeks have been amazing. I’m starting at the beginning again, new body, new things to learn. And I have a goal. A crazy, ridiculous goal that I still can’t explain exactly why I want to, other than I have the feeling it would mean something great. I’ve decided to try to get my blue belt back by December. December 9th of this year marks my third year of the car accident and part of me thinks it would be kind of of a big deal. It’s a lot of hard work but it’s definitely been enjoyable so far.

Actually, I lie. It’s been fucking amazing so far.

And for anyone reading this who also has CRPS, I want you to know that even if you don’t get a cure, even if you don’t go into remission, it doesn’t mean you’re life has been taken from you. You can live with CRPS and you can even enjoy your life with it. You have to do what’s best for you, not what any of your doctors think is best for you, and not whatever your family or friends think is best for you.

You can do this.

Don’t ever let anyone tell you that you can’t.

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Crip Jobs

I apologize for the delay in updating this blog. It’s something I’d like to do a bit more frequently but I had started the job hunt once again and have been dealing with that for some time. What I’ve learned from this experience is that few people want to hire crips. Yes, I know, the economy sucks. Perhaps it’s all just in my head. It’s just not possible for a girl in a chair to serve coffee.

Those are excuses. Plain and simple.

I know for a fact that there are a few places that did not hire me purely because I’m a gimp.

Do I have proof? No. All I have are anecdotes.

I go into a CVS and ask a manager if they’re hiring. They tell me no. A few days later there is a ‘Now Hiring’ sign in their window.

I ask a coffee shop if they’re hiring and they tell me no. A few days later an acquaintance tells me about how they’ve been desperately looking for someone.

I get an interview with Victoria’s Secret. They’re pleased that I have retail experience, open hours, and the interview goes terrifically well. I don’t hear from them again, so when I call they lie about changing the week of training and again don’t call me back. I talk to a different manager in person after that and that’s where I find out training was scheduled as usual. I ask for the hiring manager to call me back, so I could see where I went wrong in the interview. I never get a reply. They hired a girl who wore jeans and flip-flops to the same group interview. I wore a suit outfit.

I drop off an application in person to Forever 21. It’s almost a month later before they call me back and leave a message stating that for some reason, my application had been ‘misplaced’ and that they would have called me sooner. I don’t even bother calling them back. I didn’t want to go through the same Victoria’s Secret process all over again.

My favorite anecdote is one from a hotel that I live close to. The Gideon Putnam. I went in person to drop off my resume and fill out an application for a desk clerk position. When I went there, the employees were nice enough to point out a gift shop position that I would be better suited for and that I should come back in a week for the job fair with on-the-spot interviews. I go back the next week, dressed in a professional suit outfit, hair done, nails done, make-up done, etc. while the majority of people are dressed in jeans and yoga pants and t-shirts. The interview goes impossibly quick and I am sent for drug-testing. Everyone assures me that that means I got the job. My drug test is clean, of course. But no one ever calls me back to schedule me to work. After two weeks of silence, I call the Gideon Putnam and they refuse to tell me for certain whether or not I got the job but that someone will call me back to schedule and they tell me not to call again. And so I wait. But there is no phone call.

I begin job hunting again and finally land a job at Hannaford as a cashier. During this time, I head to the doctor’s for a visit (the same place I had my drug test for the Gideon Putnam) and they ask “and are you still working at the Gideon Putnam?” I express surprise and say “No, they never even called me back. I work at Hannaford.” The employee changes the information in my file and the VERY NEXT DAY the Gideon Putnam gives me a call asking if I’m still interested in a job.

Please, tell me that there’s nothing completely fishy going on there.

And now for the good news. I did get hired as a cashier at my local Hannaford. I shop there frequently and most the employees recognize me on the spot. I’ve always had cashiers and baggers listen to my requests and respect my want to take my groceries out myself. The store is more expensive than most, but I get approached less and get less invasive questions.

So when I saw that they were hiring, I dropped off an application, and got an interview. Instead of the interviewer asking me about my disability that asked me what I could do, couldn’t do, and what type of accommodations I would need. They called back within the week and said I definitely had a job. They brought me to the cash registers to see what kind of accommodations I would need.

Within the first week we found that while I can reach everything, things could be done to make it easier and safer for me. They brought in a carpenter, a safety inspector, an ergonomics guy, and the store manager to see what can be done. They’re currently working on adapting an entire register just for me, taking parts out, changing wiring, and adding a ramp and a cushion that I can add to my chair to make me higher.

Do you know what this store is doing? They are taking the phrase “reasonable” and raising the bar for others. By adapting one (and possibly two) registers for wheelchair accessibility, they’re allowing other employees in wheelchairs to have easy access to a job.

And when I expressed surprise to the managers and said, “No one’s ever done anything like this for me before,” they expressed shock and surprise.

I’m also not the token disabled girl at the store. There are many employees who are obviously disabled as well. And it’s not like WalMart where they just stick the obviously disabled as greeters, everyone is in different positions and different levels.

The only thing I fear about this job is that they might spoil me. I might start expecting to be treated ‘normally’. I might keep expecting to have rightful access to the world.

Because if one corporation can so easily make accommodations, then I’m going to start to believe that anyone who doesn’t even try is purposefully excluding disabled people from their environment.

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My Body. My Choice.

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)

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!

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)

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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