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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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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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.

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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.

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Balance, Or Lack Thereof

The very act of moving for me is a careful calculation of balance. In school, I swerve and stumble through the halls like an toy top spinning crazily this way and that. I have a ginormous backpack situated precisely on my shoulders, and if you're not careful, you will more than likely get smacked with it. My crutch stabs unmercifully the floor or unsuspecting people who are stupid enough to get in the way. My purse and AlphaSmart case swing crazily from my left arm and more often than not I have a Vitamin Water clutched spazzily in my left hand. The slightest gust of wind or nudge from behind can overbalance me and send me flying towards the floor. People who obliviously kick my crutch from behind by accident soon learn that yes, I am leaning on that, and yes, if you kick it I will fall. In the sea of people I cling to the nearest wall or locker, praying I won't get blown away like a leaf in the wind.

Balance issues, for me at least, are incredibly complex. Keeping my balance walking or standing is about the same as a non-disabled person trying to balance on a tightrope. And standing in one place takes a lot more muscle control and balance than walking does. At least with walking you have that momentum, that one foot in front of the other (or in my case, crashing into the other) pattern. With standing you are not moving, and there is no momentum. And yet people wonder why it is fairly impossible for me to stand on long lines, or on a moving train, etc...The coordination of muscles required is amazing.

I also need to learn how figuratively balance. The activities I do - all my advocacy work, dance, swimming - on top of my schoolwork (still wondering why no one talked me out of taking 4 AP classes my senior year...?) and planning for college - it's exhausting for anyone, to say nothing of people like me who have fatigue issues already. No wonder this blog usually goes by the wayside. On a regular basis, I get comments from people about how I'm always tired, or how I always need to sit, and it pisses me off. If they spent one day - ONE DAY - in my body, they would understand. I'm not lying or being lazy. I really am always tired. Wouldn't you be?

I'm hoping college will be easier for me in terms of balance - both kinds. I've recently started using two crutches instead of one in certain situations and it seems to improve my balance enormously. Also, in college my schedule will be more spread out, I will have more time in between classes to balance other things. I won't be sitting in school for six hours straight when I could be doing something more productive. It just will be a lot more flexible.

And....oh look! It's another one of those balancing times! I need to balance blogging and schoolwork! Outline for senior research paper due tomorrow! *leaps up with renewed vigor, overbalances, and falls over*

...it just figures.

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Spread the Word to End the Word

So after all the positive responses to my post for March's Disability Blog Carnival, I've made a promise to myself to blog more, and today is the perfect opportunity. Today is End the R-word Day. The R-word campaign, run by the Special Olympics, is a national effort to "change the conversation" and eliminate the word "retard" from our language.

My problem with the r-word is not so much when it's used medically as a diagnosis, because, unfortunately, in this day and age, a diagnostic label is needed for any disabled person to get services of any kind (more on that in another post). My problem is when it is used as a synonym for "stupid". We all hear it - I hear it in school especially. "You're acting retarded." "That assignment was so retarded." "You look like a f***ing retard." Tons of people, from celebrities to TV personalities to ordinary people, use the r-word derogatorily. The r-word has been integrated into our culture so much that no one bats an eyelash about it.

The sad part, people have no idea of the r-word's connotations towards people with cognitive/intellectual disabilities. Not only is the r-word used as a substitute for "stupid", which people with cognitive/intellectual disabilities are NOT (some of them are more intelligent than me in some ways!), it also implies that being "retarded" is a bad thing. It is words like this that reinforce fear and sterotypes, because it is sending the message that being disabled (in any way) is this horrible thing that no one would ever, ever want to experience. No one ever wants to be "retarded". I won't deny that being disabled is difficult sometimes, but it's not BAD.

Anyway, I'll end with a quote from my mom, who not only is a parent of a disabled child, but also is a special ed teacher aide: "Some of my best friends are R!"

And for a slightly different perspective on the R-word, here's "About Being Considered "Retarded"" by the wonderful Amanda Baggs.

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I am not "just like you".

Sooooo....haven't updated since May. Good to be back. Hope someone's actually reading this. And while you're at it, check out my new website, Mosaic Webzine. It's a monthly/sort of monthly webzine dedicated to disability culture, pride, and empowerment. Sort of like this blog, except the difference is on Mosaic other people actually write stuff, and it's not just me going on about myself all the time.

So, this is my first post for the disability blog carnival. I've never done it before, just because I've never really had the time. But when I saw this carnival's theme, inspiration kicked me in the stomach, and I came up with this. Hope you enjoy!

The theme is: "If you had the chance to strike down one stereotype, which one would it be and why?"

Much of the mainstream disability rights movement and disability based organizations in particular seem keen on promoting the “I’m just like YOU!” factor. Well, here’s a news flash for you: I’m not just like you.

We have things in common, sure. We both like to read, we both go to school, and we both are intelligent people. We both might have the same political beliefs, or we might both want to go to college. But I am not just like you. From the moment of my birth, I was not just like you. From the second my life began, I traveled a different path. I have had cerebral palsy all my life, and it is that that has made me a different person.

I have known hardships that you have never known. I have known discrimination; I have known pain of all kinds. I have known what it is like to be an unperson. I have known the struggle that comes every day from simply trying to do things that you take for granted.

But I have also known the particular joy that comes with being with my people, my brothers, my sisters, who can understand my unique experience in a way that you never will. You may understand it in your own way, you may accept it, you may even embrace it. But you will never understand like they do. And I know that, and that’s okay with me.

We are different. But aren’t we all different? Shouldn’t we encourage diversity and acceptance of each

unique individual experience? We should value each person for who they are, instead of trying to make them fit this mythical mold of “normal” that everybody thinks we should strive for. Instead of “I’m just like you” we should be saying “I’m different – and that’s okay.”

*disclaimer: I am not trying to reverse-discriminate against Abs, nor am I trying to dramatize and exaggerate my own circumstances. I am just stating simple fact. Just because I am different does not mean that I cannot be friends with ABs, or that I have some sort of hatred towards ABs. I am just trying to illuminate how the “I’m just like you” stereotype is flawed and inaccurate. The “unperson” is a reference to Amanda Baggs’ video “Being An Unperson”. Although not all of the experiences of being an nonperson she describes apply to my particular experience, a lot of them do, and just because I am considered “mildly” disabled does not mean that I have not been an unperson.

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