What About My Wheelchair Is So Threatening?

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)

“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

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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Gimp Etiquette: What To Call Us

It’s hard to figure out the right thing to call someone. The phrase ‘handicapable’ is a great example. Personally, I find the phrase quite patronizing but also quite humorous. In fact, the phrase is used in Angel after one of the villains loses his hand and his partner looks at him and goes, ‘well now you’re handicapable.’ I won’t lie. I laughed my ass off. But if you use ‘handicapable’ in all seriousness, at the very least, I’m going to give you the eyebrow raise of What the Hell Are You Smoking?

There’s all sorts of words when it comes to disability. Some are offensive. Some aren’t. Some people want person first language, others feel disability is part of their identity. If you want the least offensive way to label a person, then how about this, call them by their name. If you don’t know their name, you can ask them what their name is. Chances are, they’ll have one.

Now some of you are groaning and thinking but what if we need to explain that someone’s, you know? And well you definitely have a point. There is always going to be times where you might have to mention someone’s disability. Perhaps you’re trying to find out if a place is accessible or not. Perhaps you’re a writer and just like to have as much detail as possible. It’s not my go-to word for myself, but “disabled” is an excellent choice of words or if you’re a proponent of people-first language, “person with a disability”.

But now you’re thinking, what do you use if not “disabled”? Look at the title of this blog post. I quite enjoy the word ‘gimp’ but it’s certainly not something I would recommend using if you yourself are not disabled. Words like ‘gimp/y’ and ‘crip/pled’ are often used within the disability community as reclaimatory words much like the LGBTQ community uses ‘d*ke’ and ‘f*g’. I’m not going to say, don’t use them ever, as I don’t mind if my friends use such words but that’s also because I know they don’t use those words to hurt me. They enjoy joking around with me. But when I hear those words out of stranger’s mouth, it’s a totally different atmosphere.

Ultimately, I believe context and tone have a lot more to do with how offensive someone sounds. For an instance, if a stranger came up to me and yelled at me for being crippled bitch, it would be a lot different than if one of my friends yelled at me to ‘run over someone with my crippled ass’ (we tend to have lots of jokes about running people over as I do tend to forget to look around me!).

But when need is dire, just try calling us by name. And for some of us, our names are not Professor X, Wheels, or Oracle. (Although, I personally enjoy all of those as I’m a total geek! But some people get tired of them quickly.)

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100 Great Gimp Moments (#1)

100 Great Gimp Moments

Yup, you heard me. Great gimp moments. No, it’s not an oxymoron. I know there is a lot of people out there who think that being disabled is a terrible, horrible thing that they wouldn’t wish on their worst enemey. I know that there are people who think that us disabled people are better off dead. I know that there’s people who think we spend our entire lives hoping for a cure.

In the context of my life? That’s a load of bull. Sure, I do have crappy days, but I have good days, just like any other human being. In no specific order, here’s the first Great Gimp Moment.

Great Gimp Moment #1

It happened early on, during the beginning of my adjustment period. I was wheeling down the bead aisle of a Michael’s craft store, unsuccessfully trying to find fixative. I was in my first chair (i.e. the one that hadn’t been borrowed), all black, still bulky and not quite fitted right for me.

I passed a small girl who watched me with wide eyes. I always try to smile and wave at little kids because they’re cute and I want them to know that even though I look different, that I’m not scary. (Obviously, I have different rules for adults. They’re more likely to get glared at for staring.)

The girl didn’t say anything until I went down another aisle and all of a sudden I heard a loud voice ask, “Mommy, can I have a wheel, wheelchair?”

I was both blushing bright red and trying to stifle my laughter.

I could hear the awkwardness in the mother’s voice as she tried to gently tell her daughter, “No, you can’t.”

Like any child she spoke up, “Why not?!”

There was a dramatic pause before mother sighed and said, “Because…you’re a young…and healthy girl.”

I knew that the mother had seen me when we passed by and that she quickly realized that ‘young’ wasn’t quite the right word. Luckily for the mother, there was a boy that was with her that wanted something sparkly that focused both their attention elsewhere.

I love how adorable kids can be and how simple they seem to make things in life. The little girl saw something she liked, wanted it, and when told no, she asked why not.

You see, some kids know wheelchairs are cool.

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Blocking Accessibility: We’re Still Human

All I wanted to do was get my mail. It’s a simple thing, really. It’s as simple as most domestic chores should be. Get mail, go to the grocery store, pick up stamps, stop at the bank, and so on and on. For most people, these instances can seem like just a minute.

But a lot of times, it’s really not. Especially when people who swear that they’ll only be a minute block someone else’s way. Personally, I find this happening constantly. Now, I can’t do anything in ‘just a minute’ except for racing down an aisle in my wheelchair. Everything else I do tends to either need to be planned out exactly (which takes quite a lot of time) or spend quite a lot of time trying to find accessible routes to where I want to go.

And it’s one thing to be faced with a curb or step or a ramp that leads only to a flight of stairs but it’s a whole different thing to see an accessible route or an accessible parking spot being blocked because someone thought that they would just be a minute. To the non-disabled people who slide their cars in front of ramps and into disabled spots, you are not going to be just a minute and even for a minute it is still illegal. And it’s rude. It is ridiculously rude. There are people who need those spots, not because they’ll only be a moment, but because they can’t get anywhere any other way.

When I’m out and about and I see that there’s cars either blocking ramps or taking up handicap spots without a placard I either just ignore it (if I can) or write a little note on their car. When it comes to my home? I don’t ignore it. When people block my car or the ramp, I start knocking on doors and yelling at people to move their cars. Sometimes I try to take the time to explain to them what exactly is the problem, other times I’m merely frustrated and yell at them that they can’t do that.

And yesterday, I left to grab the mail and I see that the mail truck is parked in the hatchmarks of the disabled spot. I went up to the mail man and said, “You know that’s illegal, right?”

He ignored me.

I said again and a bit louder, “You know you can’t park there right?”

He finally turned, shrugged his shoulders and said, “I’ll only be a minute.”.”

“It doesn’t matter. It’s still illegal.”

“I parked there so I wouldn’t get in the way of anyone,” he said.

I swear, my jaw had literally dropped. “You know, it’s people like you who are the reason I have to park in the back parking lots all the time. People need that space so they can get their wheelchairs out.”

“Well I won’t park there tomorrow.”

Nowhere in this conversation did he start to move his truck into one of the available non-disabled spots. Unfortunately, I have always had a terrible tendency to thank people for even the most basic things and I said, “Thank you.”

And then I waited a second. The mail man just continued filling the mailboxes. And then I said, “Wait. Just now, I didn’t mean to say thank you for something you shouldn’t have done in the first place.” I know, not terribly eloquent.

The mailman only shrugged his shoulders again and said, “that’s fine.”

And I waited again. And waited. The mailman continued with his business, not caring that he was blocking both the ramp and any wheelchair user who wanted to get about. So I snapped a couple photos and waited some more. When it had been almost nearly fifteen minutes I spoke up again, “so you’re gonna move that truck or not?”

And yes, I was nasty about it.

“You want me to move the truck now?” he asked.

“Yes!” I said.

He finally got in the truck and moved it to a regular spot. And funnily enough, it only took just a minute to move his truck from one spot to another.

The most aggravating thing about the situation, the thing that bothers me the most, was the fact that he said he didn’t want to get in the way of anyone else. I don’t know about him, but I’m fairly certain I still count as a human being. I’m also fairly certain that parking in a regular spot instead of handicap spot does not inconvenience able-bodied people while blocking handicap spots does inconvenience disabled people.

In fact, while able-bodied people are off jaunting around on their far longer than just a minute escapades, us disabled people are often stopped from going about our daily life. If you block the disabled spots we can’t get our wheelchairs out. If you block the ramps or the curb cuts we can’t inside. This isn’t us being angry or whiny. This is us just wanting to live like everyone else.

But I guess apparently we don’t count as real people.

Not to this guy anyway.

But whether or not he agrees, and it’s pretty obvious that he doesn’t, we’re still human. We’re still here. And I will keep driving everyone who blocks my way or others up the wall until they stop doing it.

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The I Am God Syndrome

I fear I haven’t been very nice to doctors lately. I’m afraid that I must admit that it has taken me awhile to understand that a very large number of them have been struck with a most terrible illness. Something happens in their brain, where while they act completely normal, they tend to tell any difficult patient that they are lying, not trying hard enough, exaggerating, or a combination of the above.

It’s called the I Am God Syndrome.

While I Am God Syndrome or IAGS afflicts a certain percentage of people, it is found most commonly in doctors. Their illness makes them susceptible to irrational and unfounded theories that the majority of patients are merely hypochondriacs or people just looking for attention.

If you have IAGS, it is imperative that you understand that it is actually your mind playing tricks on you, not the patient. Most people are or should be understanding that very few people would subject themselves to invasive tests, electrocution, needle prodding, and being shoved into MRI machines unless they really believed something was wrong. People with IAGS are under the wrongful impression that most patients benefit in some way, shape, or form with these tests. What patients are often hoping for are answers to what is going on with them. Very few people find the taste of contrast dye delightful or CAT scans restful. No one really wants to learn if they will be allergic to a necessary intravenous dye for a triple phase bone scan. And no one really wants to pay for these tests, even if partially covered by insurance.

People with IAGS have a tendency to be boastful, arrogant, and pretend that they have the answers to everything. If they do not have the answer to everything they will decide that the question posed is superfluous and created out of a psychiatric disorder.

Unfortunately, it is terribly difficult to treat people with IAGS as they believe they know everything and thus are perfectly fine. But when possible, people with IAGS need to swallow large doses of Compassion, Rationalization, and Belief. If possible, people with IAGS would benefit from Humbleness Infusions but most are resistant due to the possible side effects (including but not limited to meekness, dizziness, and realizing that they are only human).

If you are a patient being treated by someone with I Am God Syndrome, it is imperative for both your sakes that you drop the doctor like a hot potato. It’s not as if the doctor will bother treating you anyway, and you will most likely receive a series of utterly inane, utterly ridiculous, and utterly invasive tests that will undoubtedly rule inconclusive and a total waste of time as you’ll be then told that you have been faking.

The best way to find out if your doctor has IAGS is to look at a few key factors.

1. Do they have you in their office for more than five minutes?
2. Do they take the time to listen to your symptoms and ask you legitimate questions about them?
3. Do they say they have all the answers?

If they say they have all the answers, RUN. Run far away! If they admit to only being human and unfortunately not having the answers, then your doctor most likely does not have IAGS. Doctors without IAGS will tend to listen to your symptoms and discuss them with you, which takes far more than five minutes. If they don’t know what’s wrong, then they will most likely send you to a specialist to figure out what is wrong. These are the doctors you want.

As much as I hate to discriminate, this is one instance where it is absolutely crucial. Interacting with doctors who have I Am God Syndrome will leave you feeling like you’re a miserable, crazy, exaggerative faker. You might want to overindulge in things like food or retail therapy. You will also most likely be in more pain after doing unnecessary tests for no helpful results.

So please, stay away from doctors who have I Am God Syndrome. You will be better off for it and hopefully, eventually, doctors with IAGS will realize that they really have a problem, and when they do, they can take the necessary steps to cure themselves.

Perhaps if they just believed really hard, they’d be cured.

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