A Musing on the Word "Disabled"

....or "The Social Model in A Nutshell".

Lately I've been musing a lot on the language used to describe myself or other people in regards to ability/lack thereof. Let's face it, there is no good word to describe us. I regard all of them as fairly horrible, with some being less horrible than others. So in that regard, I usually use the word "disabled" or some variation of it. But what does "disabled" really mean?

According to dictionary.com (which is my savior on all things word-related), the word "disable" means "to make unable or unfit". But we're not unable to do things, we just do things in a different way. We are still able to move, eat, breathe, and do all the functions of daily living - just differently. Even those of us who need personal care attendants are still doing all those things - they're just having someone else help them do those things.

By contrast, society's barriers are what makes us unable to do things. When a building has steps, but no ramp, wheelchair users are unable to get into the building. When textbooks are not provided in an alternate format, blind people and other PWDs who use textbooks in alternative formats are unable to read the textbook. But with reasonable accommodations, we are able to do everything AB people can do. So are we really disabled? Or, perhaps more appropriately, what is it that disables us?

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Up De-nial River Without A Paddle

....wow that was bad. Please forgive me for what I'm sure is the poor quality of this post. Given the events of the past few weeks, I'm shocked I managed to pull together a coherant post for the September Disability Blog Carnival at all. I really wanted to write a post about my changing identity now that I'm a college student with a disability instead of a high school student with a disability. That was before I left. However, when I got here, it was a bit like being plunged into freezing cold water - utterly shocking and totally unexpected in more ways than one. To say I've been having adjustment problems is an understatement. Things have gotten better for me but they're by no means all better. Someday I will write that post about my new college identity, but it's going to take awhile before I can look back on these events with a clear, rational head. So please bear with me and try to enjoy this post.

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"I don't consider myself disabled". I see this phrase a lot in the news, especially when it's a young person with a disability. The ironic part is, the article is almost always about their disability, whether it's a discrimination story or a "heroic super-crip climbs mountains" type story. This line is frequently accompanied by "I'm just like anyone else.", which I hate even more.


How utterly boring. Why would you want to be just like anyone else, first of all? It's ironic that our culture emphasizes diversity and the "big melting pot" way of thinking, and yet people feel this intense pressure to conform to the norm. A line like "I'm just anyone else." is frequently inserted at the end of an article, I guess to leave readers thinking that PWDs are just like everyone else, which just annoys me. See my previous post on the topic, I think for the February DBC??

Second of all, you do have a disability. If you have an impairment that prevents you from doing "one or more major life activity" or makes it difficult to do said activities, THAT IS A DISABILITY. I don't think I can spell it out any clearer than that. And THERE IS NOTHING BAD ABOUT THAT. Having a disability is hard at time, I will be the first to admit that, especially after the past few weeks. But it's not a horrible experience. At times it is even beautiful. And it really shapes who you are. People act like denying their disability deserves some badge of honor, when it's really very destructive. Not only are you denying a fundamental part of your identity, you are also denying yourself services that could help you. And taking services doesn't make you lazy or less - it makes you able to be a functional human being. It makes you able to do the same things as able-bodied people. It's leveling the playing field, for god's sake! If you deny your disability, then you shouldn't complain when things are hard for you.

Another one I heard on TV the other night when I was watching a special on progeria, a disability that causes rapid aging, so that kids look like they're about eighty when they're about five. It's very sad because these kids don't usually live past the age of 13 or so. But that's not the point. Anyway, one of the girl's parents in the special said, basically: "When I look at her, I don't see progeria." And that annoys me.

Am I being too nit-picky here with my distate for words/phrases? I agree that disability shouldn't be all you see, but it's gotta be part of it, especially if you are visibly disabled/different. Yeah, you see the person, but the disability is part of the person, just like brown hair or blue eyes is. You wouldn't say "When I look at her, I don't see brown hair." would you? That would be ridiculous. You see the brown hair as part of the whole person. Same with disability - it is a part of a whole.

The thing with these phrases that I don't get is that this denial is tacitly applauded and even encouraged. When someone says "I don't consider myself disabled" or "I'm just like everyone else", they are generally lauded over how much they've overcome their disability (another phrase/stereotype I want to bash to pieces - a disability is not something to be overcome, it is something to be worked with to find alternate ways of doing things) and isn't that so great. Which, of course, reinforces the stereotype that a disability is a shameful, evil thing to have and it should be hidden and suppressed whenever possible. And of course it is those images of disability that make it into the media, rather than the images of disability pride and culture.

Seriously. I implore you. Don't deny your disability. You don't have to love it. You don't have to be into disability culture. You can even hate it. But when you acknowledge it, you are admitting that there is something that makes it harder for you to do certain things, and that that is okay. There is nothing bad about disability. If we were all "out of the closet", so to speak, maybe disability wouldn't be such a taboo topic in our society.

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Check me out at Love On Wheels!

I was recently honored to be interviewed by Ekiwah Adler-Belendez for his blog Love On Wheels. Ekiwah has cerebral palsy and is an extraordinary poet. Ekiwah was one of my earliest heroes and inspired a lot of my own writing, so I was extremely honored when he asked me for an interview. His blog, Love On Wheels, deals with the complex issues of sex, sexuality, and relationships in relation to disability. You can check out my interview with Ekiwah here at Love On Wheels!

Note that my interview/bio reveals my real name. I've blogged under the name Spaz Girl for a very long time and I've tried very hard to keep myself anonymous for a number of reasons. But as I'm moving more and more into the blogging realm, I want to make my blog more public and more associated with me as an activist. In this interview, specifically, I wanted my bio to reflect the work I've done as a disability activist. Not to mention that with a little googling and connecting the dots, it wouldn't be that hard to figure out who I am based on what I reveal in my posts. So...I'm revealing myself. It's a big leap of faith for me and one that I was a little reluctant to make. I can only hope that good things come out of this decision.

On an unrelated note....I've changed the text color for my posts to make them (hopefully) easier to read. Let me know what you think.

(.....three posts in one month, what is this...?!?)

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Death (or permanent disability)

I've always been fascinated by medicine and medical shows of all types. When I was younger I seriously considered becoming a pediatrician before realizing that a pediatrician with bad motor skills would probably be a total fail (can you imagine me giving someone a shot?? "Oops, sorry, stuck a major blood vessel, no big deal!"). Then my own interest in my CP led me to the idea of becoming a neurologist (not to mention I idolized Dr. Jan Brunstrom, a neurologist who has CP herself), before I decided that all those years of schooling weren't for me). Now I'm onto my current goal of becoming a special education teacher and disability activist, but I still have that same intense fascination with all things medicine. I've spent countless hours glued to the TV watching doctors perform some intricate medical procedure, while my parents and sister pass by, shudder, and go "How can you watch that??"

It is in the midst of all these medical shows that I have become aware of a very disturbing trend. Too often I'll watch doctors on TV performing some intricate procedure while the voice-over narrates: "One wrong move could cause death or permanent disability." (emphasis added).

As if the two are interchangeable. Equally horrible outcomes. One and the same.

Is this really what our society still thinks??? 20 years after the ADA??? That being disabled is equivalent to being dead???

It's stuff like this that always makes me want to go back to the "other minorities" comparison. Would people say, even imply, that being black is equivalent to being dead? Of course not! Not out in the open, anyway, and not in this day and age. It would be ludicrous! It would cause a huge uproar! An uproar similar to when Dr. Laura said the N-word yet Jennifer Anniston was merely "scolded" when she said the R-word! Not to mention that the n-word apparently actually is offensive, while the r-word is only considered offensive! I feel another blog post coming on....

Let me get one thing straight: being disabled is hard. And most of the time, it's not fun. I wouldn't wish a disability on anyone. And I do understand that there is a certain grieving and adjustment process with an acquired disability. I think being born disabled is probably easier than having an acquired disability, because we learn to accept ourselves for the way we are very early in life. So I think becoming disabled later in life would be a very difficult thing to cope with. But here's a revelation: being disabled is not the end of the world! With proper support, people can adapt to being disabled. It doesn't mean they have to love being disabled, it doesn't even mean that they have to share in disability pride, but it means that the quality of life they have as a disabled person can, and hopefully will be as good as the quality of life they had as an AB.

It's certainly preferable to death, at least in my opinion. After all, I'd rather be disabled than dead!

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The Importance of a Crip Community

This is my post for the August DBC at Brilliant Mind Broken Body. The theme is distance and I dearly hope I didn't stray too far off that topic. Hope you enjoy!

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When you're one of the only disabled people in a community full of ABs, you feel like a burden, like being different is wrong, and you aspire to be "normal". That's what society tells us, and when there's no one around to counter that assumption, that's what you're going to believe.

That's why it's so so so so so so so important to have a crip community. I'm speaking from experience. From kindergarten on, I was fully mainstreamed. I had one or two friends who had disabilities, but neither of them really considered themselves part of a disability community. And both of them were my age, so I had no older role models to tell me that it was OK that I was disabled and that it wasn't something to be ashamed of. There was no one to teach me how to advocate for myself. I learned everything as I went, going boldly where no crip had gone before - or so I thought.

It wasn't until I went to a camp for physically challenged children when I was thirteen that I really realized that other people had the same experiences - particularly in the school system - that I had. Stories of similarly annoying aides thrilled me; finally, I wasn't alone anymore! My whole world was radically shifted. I took my cue from the girls who had been there longer than I had, who had developed a sense of pride in their disabilities and who weren't afraid to flaunt it. I started calling myself a cripple and getting involved with disability-related activities. I immersed myself in disability culture. I finally felt comfortable in my own skin. Camp taught me these invaluable lessons that I will never forget: that being disabled isn't a curse or something to be ashamed of, but something to embrace and be proud of, just like any other heritage.

It wasn't until last year that I started talking to adults with disabilities. Through various crip events, I met a group of crips in their 20s and 30s, crips who had done what I was doing and lived to tell the tale. These crips served, and still serve, as role (or roll) models for me. When you're disabled, especially when you're creeping onto the edge of college and adulthood and all those scary things, there's always this fear: What's going to happen to me when I get older? How am I going to do X, Y and Z? Who is going to take care of me? Will I end up in a nursing home or similar institutionalized setting? Will I find a man who is accepting of my disability? Even if you are, like me, fairly independent, these thoughts still run through your head. These crips were living proof that yes, I could be a successful adult with a good quality of life. That reassurance was almost mind-blowing. I still worry about the future, but some of the mystery has definitely lifted.

So while the disability community may, in fact, be the largest minority, it is also unique in that it is extremely isolating. Unlike ethnic minorities, disabled children are often the only disabled people in their families. Families might not be supportive of embracing the crip lifestyle, forcing the child to conform to a non-existant mold of "normal". Even if a child has a supportive family, there is absolutely no substitute for contact with other PWDs, especially older ones. I think a great idea would be a mentoring program, kind of like Big Brother, Big Sister, where children/teens with disabilities are paired up with mentors with similar disabilities. What say you?

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It's not that simple.

My post for the July Disability Blog Carnival. Considering I was not home and did not have access to a computer for the majority of the month, I am amazed that I can actually get a post in for this month. I am awesome. Onto the post!

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Recently I've been working on a huge milestone for me - learning how to drive. This will be an extraordinarily difficult task for me, but in light of a few recent paratransit fails, I feel it's necessary for me to know how to drive in order to have any sort of independence at all as an adult. But I tell people that it's going to be difficult for me to drive, and I get well-meaning, but idiotic comments like "fill-in-the-blank random person with completely unrelated disability drives, so you can too!" or "You can just get hand controls!" It's not that simple, people.

OK, so I might need hand controls, but that's not what I'm worried about. The thing about CP is that it has some visible, evident parts to it, such as the whole my-legs-don't-work-that-well thing and my obvious spasticity, especially when I'm tired. And it also has a lot of non-evident parts to it, especially in my case.



Partially because of weak eye muscles causing my eyes to drift in/out, partially because I think it's part of the brain damage that caused the CP, I have major problems with depth perception and directional skills. I always had trouble with left and right - even now, I have to think for a second about which hand is my right and which hand is my left. It took me a very long time to grasp the whole "when I'm facing you, your left is my right and vice versa" concept. That alone could be catastrophic when driving, when you have to make split second decisions about which way to turn, or who has the right-of-way. Even studying for my permit test was difficult, because it was hard for me to visualize the scene when they talked about left and rights. I was infinitely relieved when none of the left/right stuff was on the actual test (I passed with only one wrong!).



On top of the directional stuff, though, is the perceptual stuff. They're kinda related and I usually group them together as perceptual/directional issues. Problems with depth perceptions mean that I have trouble seeing in 3D. For years, this had absolutely no impact on my life whatsoever; all I knew was that I couldn't see the fly pop out when they asked me at the eye doctor's office. Then as I grew older and more aware of my surroundings, the loss of depth perception started creeping into my "real life". I have trouble seeing things on top of other things if they are the same color or pattern. For instance, if there's a puddle on the ground, I don't always see it because it blends in with the ground, and I don't always realize how deep it goes. I've stepped in many a puddle this way. Also, if there's a step that's the same color/pattern as the floor, I don't always see it, and I've had a few scary moments where I've almost fallen down the stairs because I didn't see the step. This could also seriously impair my ability to drive.

Now after reading that, you probably think I'm crazy for even considering driving at all. Most of my friends and family seem to think so. But the thing is, if I don't drive, there's a very good chance that I won't be able to go anywhere independently when I'm living on my own. I can't take public buses because if the bus stop is more than like a block away, I can't walk to it and if the bus stop doesn't have a seat, I'm seriously screwed. I can't take the scooter because who knows if the bus will have a working lift, and then I have to worry about if the place I'm going to is accessible. I can't get to a train station on my own if it's even remotely far away, and I can't stand waiting for a train. Not to mention with my directional issues, I'd be petrified to be in a big train station by myself (I'm thinking of a few in NYC...). And again, separate issues arise if I bring the scooter - will I be able to get it onto the train? Off the train? Will there be a spot for it on the train? And will my destination be accessible? And paratransit is so ridiculously unreliable that it's barely even an option. So unless I drive, I'm looking at a fairly bleak future limited to the few places I can walk/roll to.

I'm not saying driving is completely impossible for me either - I know I can do it, it's just going to be difficult. I'm realistic with myself, and I know that driving isn't going to be easy. Which is why it annoys me when normies, even normies that are close to me, act like just because my physical issues are relatively mild, that driving is going to be easy-peasy-lemon-squeezy. That's not the case at all, because as much as the evident aspects of my CP are going to complicate driving, the non-evident aspects are going to complicate driving even more. But I have faith in myself. I should be getting a driving evaluation before the end of the summer and from there we can move forward onto actual driving. So watch out for Spaz Girl on the road everyone!

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It's Our Story

Have no spoons between having gone through a week of hellish AP exams and having a horrible cold, but I'm still attempting to do the May Disability Blog Carnival. The theme this month is "Story".

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The disability story is pervasive. It transcends all races, genders, sexual orientations, economic backgrounds and many more. It is a common thread that links diverse groups together. It is an undercurrent of life itself. We associate life with ability - the ability to get up, do things, be a productive member of society. On the flip side, disability is bad, because people perceive it as a loss of quality of that thing we call life.

The Victor Pineda Foundation has recently launched a project called It's Our Story. Basically It's Our Story is a collection of interviews with disability activists and leaders young and old. It combines Justin Dart's Discrimination Diaries with new interviews conducted in the past few years. It delves deep into the disability experience in America. It pieces together stories of pain, stories of hope, and stories of freedom, stories of activists coming together to free our people. People of all different walks of life (pun not intended) linked by a common thread of disability. It's a beautiful mosaic of voices from the past and present.

I've been curiously drawn to the It's Our Story project ever since I first discovered it. I'm fascinated by all those voices, all those stories. It's like grandparents and parents of disability rights passing these stories down to their children. I hope to one day share my stories with the world so that young activists can learn and be better for it. The It's Our Story team is creating an archive of these interviews so that they will never be forgotten. Maybe I'm a hopeless Star Trek fanatic, and maybe I'm naive, but I truly believe in Gene Roddenberry's vision of a world with no discrimination. (Can't you tell I've been watching too much Trek lately?) Maybe, one day, some young person will stumble upon these videos just as I have, and learn from the past, carry that with them, so the world will never forget the horrors of what we have been through.

I'm posting the trailer video below for all to watch. To see more, head on over to http://www.itsourstory.org/ and be sure to check out the rest of the May DBC at Barriers, Bridges, and Books.

"It's Our Story" Trailer (captioned) from ItsOurStory.org on Vimeo.

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