Hey look, I'm hosting a blog carnival!!!

Hey all, I am THRILLED to be hosting the January edition of the Disability Blog Carnival!!!!!!!!!! What is the DBC, you ask??? Oh, my dear, you have been deprived! The DBC is, quite frankly, a collection of posts on disability and a specific theme. The theme, and the host, changes from month to month, and I am humbled and honored to be hosting the first disability blog carnival of the new year. The theme I have chosen is LET YOUR FREAK FLAG FLY, taken from the title of a song in one of the Shrek movies, and one of my favorite songs of all time. Write about a time when you openly and proudly identified as a person with a disabilty, or, if you're a non-disabled ally, write about a time when you were proud to stand by us. Or....you could make it into a musing on the word "freak" itself, and related words. Do they help us? Hurt us? Is it wrong to call ourselves freaks, spazzes, and gimps? Or is it empowering? Or......something else!! I'm flexible - as long as you can justify it fitting the theme, I'm good. I'm aiming to get the blog carnival up on Martin Luther King day, to honor a great activist. That is January 17th, so try and get the posts to me by then. But I know as well as anybody how writer's block and other obligations can delay a post, so if you can't get the post to me by then, no biggie, I'll just add it to the lineup later. And if the muse is on your side this month, and you want to do more than one post, by all means, go for it! Post the link to your submissions as a comment to this post, or if there's some sort of problem with that, you can email me at caraliebowitz@gmail.com. Happy blogging!!!!!

"We spend our whole lives wishing,

we weren't so freaking strange.
They made us feel that way,

but it's they who need to change.

The way they think, that is.

It's time to stop the hiding.

It's time to stand up tall.
Sing hey world, I'm different,

and here I am splinters and all!

Let your freak flag wave
Let your freak flag fly
Never take it down, never take it down
Raise it way up high!

Let your freak flag fly!

Let it fly, fly, fly!"

Long Nights and A Beautiful Sunrise

Once upon a time.....

Once upon a time, I was scared and lonely. A lot of changes were happening in my life. I was eight years old and just coming to terms with my own disability. I realized that I was always going to be this way. I didn't have any friends who really self-identified as a person with a disability and I felt very isolated. No one could understand what I was going through, especially not my able-bodied friends at school. I broke down and cried a lot, with what I now know was a lot of anxiety. I had no disabled role models, no one to look up to, no one to tell me that things were going to be okay, and that I didn't have to feel ashamed to be this way.

My mother realized that I needed a friend like me. So, with her guidance, I traipsed into the still-fairly-mystical world of the Internet and began posting on a messageboard for kids with CP. I stipulated that I was looking for someone with mild CP, because those issues were unique to me and really what I was struggling with at the time - looking so "normal" yet still being different. A few people posted back, but no one I really connected with. And then Fate dropped an amazing gift practically in my lap. A boy with mild CP named Nate replied to my post - he was looking for someone like him, too. We struck up a lengthy correspondence first on the messageboard; then we moved to email. Eventually, I found out that he lived in my state, barely an hour away from me. We had to meet.

The first time I met Nate, I remember us both being really shy. He brought along the science project he had done on CP, where he had various able-bodied people try and accomplish various tasks while "CP-ized" in some way: i.e: fine motor tasks with gloves on, saying the Pledge of Allegiance with their tongues behind their teeth to simulate speech impairment, etc. I thought it was really cool. For the first time, I had someone who knew what it was like to "walk funny" and have difficulty with the simplest tasks. It was that day that my sun began to rise, and my metaphorical "long night" began to end.

Over the years, Nate and I grew closer and closer. He became one of my best friends, and our families became friends as well. We had many adventures together, me, Nate, my sister, and his sister. Nate and I wrote a small "book" about what it's like having CP. We roasted marshmallows together in his backyard and taught each other our favorite computer game tricks. One summer, our two families shared a rustic cabin vacation. When I made my first website, Abilities4u, Nate made t-shirts for the site and helped out in any way he could. Up until I met a few others at age 12, Nate was my only CP friend, and that made him special.

When I was 15, I convinced Nate to come to camp with me, and it changed his life in the same way it changed mine. Although we both branched out and met others with CP along the way, we never stopped being each other's best friends. And when I was 17, a close friendship suddenly blossomed into something more. Nate and I have been dating for about a year and a half and I couldn't be happier. He is the love of my life, and I will never forget that he was there for me during one of the darkest periods of my life.

Along the way, a lot of opportunities came for me through the Internet and social networking. My first website expanded and grew into something more, eventually acquiring a domain name, and helping many disabled kids and their parents, who weren't sure what to do during their dark nights. I gave them advice from personal experience, because I knew all too well what it was like to know nothing. I moved from CPKids onto other boards, like the Ouch! messageboards. I networked with other like-minded crips through Facebook. Almost a year ago, I created my second website, Mosaic Webzine. To this day, the Internet and social networking is how I keep my finger on the pulse of the crip community.

The theme for the December Disability Blog Carnival is "long nights and what we need to get through them". Initially, I had no idea what to write. I thought about writing how my anxiety has caused me many long nights in the past few months, but I couldn't find the words. I posted my dilemma on Facebook and within minutes, Stacey Milburn, better known as cripchick in the disability blogging world, suggested an idea. So this post wouldn't have happened without social networking. I feel so blessed to be a part of a community that has the ability to stay in touch, no matter where we are. I've come a long way from the scared little girl of eight, but my life is so much fuller. None of this would've happened without Nate and CPKids, and I am reminded of that every day. Now I not only have a wonderful boyfriend with CP, but countless others around the world who have come into my life. My sun has truly risen now, and I have come out of those long nights. I hope it never sets.

Me and Nate at our senior prom last June!

International Day of Persons With Disabilities

Today is International Day of Persons With Disabilities. On this day, I encourage you all to be out and proud disabled persons, or if you are non-disabled, allies and friends of disabled persons. I know that on this day I am extremely proud to be disabled, however many hardships that may bring me, it also brings me a unique, beautiful perspective on the world and infinite opportunities I wouldn't have had otherwise.

Today we celebrate OUR history, OUR culture, and OUR accomplishments that are so often belittled and forgotten by the rest of society. Instead of remembering Rosa Parks in the front of the bus, we remember the first ADAPT action, where a bunch of feisty crips blocked the road with their chairs, demanding buses with lifts. We remember Ed Roberts, who fought for the right to go to college and have personal attendant services - and won. We mourn the loss of Laura Hershey, who contributed some of the most striking and beautiful poetry as well as a rip-roaring activist spirit to our movement.

Today we soak in OUR art and OUR talent. We dance, we sing, we create. We acknowledge that people with disabilities have contributed more than some may think to the arts and society as a whole. We are Shameless.

Today we recognize how very far we have come - and realize that we still have a long way to go. We applaud the strides that laws like the Rehabilitation Act, the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act have made for us. But we are sobered by the fact that our civil rights - which should be set in stone - unfortunately are not, and even now our rights are threatened every day by inaccessible public places, crappy transportation, and separate and unequal treatment. On this day and every day, we continue to fight for those rights, and we will fight until we have the rights we deserve - both in principle AND in practice.

On this day, we celebrate all across the world. On this day, we are not pitied, ashamed, stereotyped or patronized. We are proud.

Three strikes, yerrrrrrrr out!!!

My post for the November Disability Blog Carnival. Enjoy!

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Our society is very rigid in its expectations of a "normal" person. A "normal" person is white, male, straight/comfortable in their own gender and able-bodied, and very little deviance from this Norm is tolerated. It's when someone deviates from two or more of these standards that we get intersection theory - where, in a nutshell, you get treated differently the more "strikes" you have against you in society. So for instance, a lower class black woman would have three strikes against her, where as a man in the same situation would only have two.

Disability can definitely count as a strike against you. Do women with disabilities get treated differently than men with disabilities? Hell yeah!!! Women are still regarded in our society as weaker and often less capable then men - disability just adds an extra layer onto that. We have this image of a "gentleman" always helping the ladies and saving the "damsels in distress". And who is more "in distress" then a poor crippled girl? I say "girl" because I believe women with disabilities often have trouble with getting people to acknowledge their femininity, more than men and masculinity. Now, I may be biased because I am a woman with a disability; I acknowledge that. But let's face it, the stereotypical image of disability is a man using a manual wheelchair with a perfectly functional upper body. And that's so because men who have big muscles from pushing themselves around are regarded as more masculine because big muscles are a symbol of masculinity in our society. Masculinity doesn't depend so much on the lower body as femininity does. The "ideal man" is tall, dark and handsome, and has big muscles. The legs don't matter so much (as long as they're clad in a pair of sleek, form-fitting blue jeans). Whereas with women, the "ideal woman" has to be thin and beautiful, with lots of makeup, big boobs, long legs and high heels. You don't think high heels are instrumental for the "perfect woman"? Try finding a pair of shoes for senior prom that don't have any heel whatsoever and then talk to me. This "ideal man/woman" concept is also part of the reason why we have a hierarchy of disability. The image of the man using a manual chair is a lot more respected in our society then, say, a man with CP who uses a powerchair, drools, and has slurred speech. It's all about presentabiliity. As long as your legs are all that's "wrong" with you, it's a lot easier for people to accept. But move up the body, and the higher you get, the less accepted the impairment is, especially when it involves more than one part of the body. Throw gender into the mix and this hierarchy is amplified tenfold.

And what about race? I know there are a few crip bloggers out there who blog about being black or another race/ethnicity and disabled - Wheelchair Dancer comes to mind. People definitely treat black and disabled people differently then white, disabled people. Again, it doesn't fit the stereotypical image of a disabled person. Also, especially with black, disabled men, there are a lot of assumptions and misconceptions about gang violence. As Keith Jones puts it so nicely in the documentary Including Samuel, "People say, '...When did you get shot?' Black man in a wheelchair, had to be an act of violence." So being of a different race/ethnicity and disabled is definitely another "strike" against you.

Being gay/lesbian/trans/bi and disabled is an interesting intersection, I think. Because being GBLTQ strays so far from our image of the typical, "normal" person, man or woman, to begin with, and then disability is another "strike", so to speak. Also, I think the GBLTQ community and the disability community have a lot in common. GBLTQ people are still fighting so hard for the rights they deserve, and so are disabled people. GBLTQ people are also regarded as more "freakish" than other minorities and so are disabled people. The intersection of being queer and disabled was explored a little bit in one of my favorite crip documentaries, Shameless: The Art of Disability. There are also a couple of great queer/disabled bloggers out there. There's one blog that I read recently that's two lesbian lovers that are both physically disabled and live far from each other writing letters back and forth. I'm pretty sure the womens' names were Stacy and Mia but I could be wrong. Can't find it again for the life of me. This is why I favorite things.....but then the favorites list gets too long and I can never find anything! Anyway. Getting off track.

The point is disability is an interesting enough societal issue as it is, when it's combined with other "strikes", so to speak, it becomes even more interesting. Intersection theory, as we learned in sociology, explores the meeting point between social class, gender, race, etc. Of course disability was nowhere mentioned, but then again, that's our job as disability bloggers, to bring disability out of the woodwork. We're highlighting disability as a unique sociological issue, an issue as important as social class, gender, and race. We are shedding light on one of the experiences most feared by society - and providing insight into a striking new world.

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?

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.

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...?!?)

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!

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?

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!

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.

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.

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.

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.

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.

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.