Wednesday, August 25, 2010

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...?!?)

Friday, August 20, 2010

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!

Saturday, July 31, 2010

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!



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?

Wednesday, July 21, 2010

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!





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!

Monday, May 10, 2010

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.

Saturday, May 1, 2010

Harry Potter and the Disability Invisibility Cloak

*Copying and pasting things into Blogger from MS Word is hell. Please forgive any font/formatting incongruities. Let me know if this causes problems for anyone and I'll try to fix it.*

I want to make something clear: Harry's invisibility cloak IS NOT, I repeat NOT, a direct metaphor for the experience of disability. It is a metaphor for the feeling of being invisible that disability gives you. As disabled people, we are routinely ignored - by "normies", by the media, and by pretty much everyone else. That is why we are still fighting so hard for our rights, twenty years after the ADA. That is why disablism still occurrs, every single day, even though we are such a large minority and one that more than likely will include a lot of those disablists one day. We are invisible. But that stops today. BADD is a chance for all of us to step, wobble, crutch, or roll into the light and reveal ourselves. We will no longer be ignored. Enjoy my BADD post - forgive me if it's slightly incoherent, bits of it were written at 11:00 last night after a long day and a VERY long week. Also, this is fairly unedited except for little bits here and there, so forgive any mistakes. Happy BADD to you all!
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Blogging Against Disablism Day, May 1st 2010




It started one morning, when Harry James Potter, also known as The Boy Who Lived, rolled over and fell out of bed with a loud thump.

Through half-closed eyes, he heard Ron ask Seamus: “Did you hear something?” Seamus shook his head. “Not a thing.”

At breakfast, Hermione and Ron didn’t acknowledge him, not even to say “Pass the butter, please. Neville even sat on top of him and then seemed faintly puzzled when his rear end didn’t touch the bench.

In Transfiguration, Harry was having trouble Transfiguring his dung beetle. He squashed his beetle and asked Professor Mcgonagall for a new one, but she didn’t seem to hear him. Unsurprising, really, considering the way his day was going. He raised his voice and asked again, and only then did she turn around with a somewhat distant expression on her face. “Oh, Potter. You need a new dung beetle? Right, I’ll go get you one.” Yet he never got a new dung beetle, and he wondered why everyone around him promptly got new beetles when they squashed theirs, and why his was the only tabletop empty.

Out in the corridor, Harry tripped over one of Fred and George’s fake wands that had been left lying around. He fell hard onto the unforgiving floor, his books flying out of his arms. But despite the rather dramatic crash, no one stopped to help. Students rushed busily to their classes, and not one of them slowed down. Some stepped over him; some of them weren’t even that kind and stepped on him. His books were flung in all directions, most left with dirty footprints on the covers and crumpled pages torn. Groaning, Harry hauled himself to his feet and slowly gathered his books while the corridor cleared. Only then did he see Dumbledore standing serenely at the end of a long corridor Harry had never noticed before, next to a mirror in an old, ornate frame. Dumbledore beckoned to him slowly with one long, crooked finger, and for some reason, Harry felt compelled to obey.

“Professor, what’s wrong?” Harry asked desperately, when he got to the end of the corridor. “Why can’t anyone see me?”

“Why, because you’re invisible, of course!” Dumbledore indicated the mirror with an amused gesture. “Have a look and see for yourself.”

Harry stared into the mirror; he could just make out the faintest outline of his reflection hidden underneath the folds of his invisibility cloak. He tried pulling the cloak off. Then he tried shrugging, tearing, and ripping the cloak off. Nothing worked. Finally he sat back with a resigned sigh.

“I realize, of course, that this must be extraordinarily difficult for you.” Dumbledore said gently. “Growing up as the Boy Who Lived, constantly in the limelight, hasn’t made it any easier.”

“But Professor,” Harry pressed, “surely there must be some way to get the cloak off?”

With a flick of Dumbledore’s wand, a lavishly decorated armchair appeared next to the mirror. Dumbledore took his time settling himself comfortably into it before he replied.

“Yes, Harry, there is. But it is a long, slow, and unforgiving process. As we have already seen with Lord Voldemort’s return, people are not keen on acknowledging the existence of somebody they prefer not to deal with. You will be made to feel like a problem and an inconvenience at every turn. Your needs will be routinely marginalized and dismissed, because you require a little extra ingenuity to have your needs met. Sometimes, you will even feel like you are not fully human.”

“Why then, should you even bother to fight? If all your attempts at living are met with indifference by some and outright hostility by others, wouldn’t it be better to just lock yourself in Gryffindor tower and throw away the key? Or better yet, succumb to all the voices telling you your life is not worth living and let yourself die, little by little?”

“You will think all these things and more in your darkest, angriest moments, when all the hope seems to have gone from your life. Sometimes you will wish you weren’t invisible, that you could easily throw away that cloak without a second thought. But that invisibility cloak is as much a part of your identity as your scar is, and denying that part of your identity would be neither right nor productive. And along your travels, you will meet others who are on the same quest. That is the important thing, Harry. You must always try to remember that you are never alone.”

There was a rippling of the air at Harry’s feet. One by one, others pulled off their own invisibility cloaks and revealed themselves to him. Young and old, male and female, black and white, people of all races, ages, and genders shed their invisibility cloaks and nodded in acknowledgment to him. With one smooth, fluid movement, the line of people linked hands, leaving a spot empty in the center. Without quite knowing how or why, Harry realized that spot was for him. Slowly, he took his place in the center of the lineup and felt strong hands grip his on both sides. Together, they walked proudly down the corridor, and here, amongst all these people who knew what it was like to be invisible, Harry James Potter, also known as the Boy Who Lived, started his new life.

Tuesday, April 20, 2010

It's the most wonderful time of the year...

No, I'm not talking about Christmas, I'm talking about BADD!!!! BADD stands for Blogging Against Disablism Day, and it's a truly spectacular collison of disability bloggers from across the globe. Disablism - or ableism - is basically disability discrimination of any kind. For a better explanation, go to Diary of A Goldfish and read all about it. The Goldfish has been hosting BADD for years now, and for the last two years - going on three now - I've been a part of it. So spread the word and encourage all those in the blogosphere to blog against disablism on May 1st! I'll be there...if I'm not buried under an avalance of homework somewhere.

Blogging Against Disablism Day, May 1st 2010