Butterfly Dreams

Why the abuse of disabled students needs to stop (and it needs to stop RIGHT. NOW.)

2011-12-23T22:58:00.002-05:00

There has been a disturbing flurry of incidents breaking out lately about school staff abusing disabled students. The latest one involves an autistic student being PUT INSIDE A DUFFEL BAG with the drawstring pulled tight OUT IN THE HALLWAY. With gym balls. Like he was no better than a piece of gym equipment.

You know what the most disturbing, terrifying part of all these abuse cases is? It's not that they're happening in the first place, although that's certainly disturbing enough. It's that these acts are passed off as being okay. When this mother came to pick up her son and found him in a duffel bag, an aide was "standing by". The school told her it was a form of therapy. And they "told her it was not the first time they had put him in the bag".

Just casually - "and oh yeah, we put your son in a bag where he could've suffocated for THERAPY".

This is by far not the first case like this, and I shudder to think of how many more abuses are committed under the guise of therapy around the world. Committed in the name of rehabilitation, in the name of making us magically stop being different and making us normal. Does the world really hate us, fear us and our differentness that much, that kids' emotional and physical well-being would be sacrificed in the name of normality? The answer seems to be yes.

There seems to be this prevailing attitude that disabled students - and especially those who receive segregated services like segregated transportation, therapy, etc. - are some sort of subspecies that are exempt from deserving respect. Therefore school staff and others that work with the students can screw them over however the hell they want. They're just bodies, vegetables. They don't need to know if they're going to have the same aide or bus driver from day to day. They don't need to get to school on time. They don't need or deserve to be in class, because after all, it's not like they're actually learning anything. They don't need or deserve to have an aide who does their job, without abusing the student or making the student feel like a burden. And these students certainly don't deserve an apology when someone wrongs them. I've seen this attitude in practice myself countless times, and it can lead to incompetence, neglect, and outright emotional and physical abuse.

Unless we stop this ableist attitude in its tracks, unless we embrace the radical notion that people with disabilities are - *gasp* - people, human beings, just as worthy of equality and respect as anyone else, this awful abuse is going to continue. It's going to continue, because society makes us believe that if you're not perfect, you're not anything. You're nothing. And since you're nothing, people can do whatever the hell they want to you and get away with it. How many more kids have to be traumatized, how many more kids have to be hurt, how many more kids have to die before this becomes unacceptable? Before no one gets away with these acts, or better yet, does them at all. Before the world is as outraged as we as activists, advocates, disabled people are. Before parents can send their children to school - all their children to school - and know that each and every one of them is being treated with equality, dignity and respect. Before no child is afraid of going to school. I hope, for my sake, for the sakes of all the disabled children who came before me and all who will come after, that that day is within our reach.

Click here to sign the Change.org petition demanding the end of abuse of disabled students in schools, created in response to the duffel bag incident.

Visible vs. Invisible

2011-12-20T23:19:00.000-05:00

Warning: This is going to be a long, probably discombobulated post in which I word vomit a lot of thoughts I have on "visible" vs. "invisible" disabilities.

There's been a lot of talk 'round the disability community lately about "visible" vs. "invisible" disabilities. From the way some people talk, you'd think you could take a big fat Sharpie marker and draw a thick black line separating those with "visible" disabilities from those with "invisible" disabilities.

The issue of "visible" vs. "invisible" disabilities is kind of like the issue of "high functioning" vs. "low functioning". What label gets placed on you depends on who is doing the labeling and what situation you're in.

Take me. Depending on the day, time, situation, and any combination of factors, I a) walk without aids at all, b) walk with forearm crutches or c) use a wheelchair or motorized scooter. So does that mean I bounce back and forth throughout the day, going from visible to invisible and back to visible? If I'm walking without aids, but no one sees me, does that still mean I'm "invisibly" disabled? (And while we're on the topic of existential questions, if a tree falls in the forest and no one is around to hear it, does it make a sound?)

What about someone with epilepsy? Most of the time, they may look perfectly "normal" and thus be "invisibly" disabled. But when they're having a seizure, especially if it's a grand mal, that's sure as hell visible. Or someone with mental health impairments and self harm issues? Persimmon Blackbridge, in the documentary, Shameless: The Art of Disability, sums this up as she rolls back her sleeves to expose webs of scars from years of self injury:

That's the thing about invisible disabilities - wear a long sleeve shirt, you're fine.

When Persimmon is wearing a long sleeved shirt, she's "invisibly" disabled, but as soon as the scars come out, that's not invisible anymore. This phenomenon of "invisible" disabilities is such a fluid concept that it's impossible to pin down who, exactly, qualifies as "invisibly" disabled, just as it's impossible to pin down who, exactly, is disabled in the first place.

And even if there are people who can be neatly categorized into "visibly" and "invisibly" disabled, what does that accomplish, besides dividing the disability community even more than it's already divided? Just because I use mobility aids doesn't mean you know anything about my disability or how it affects me. And it doesn't mean you have a clue about how to accommodate me, either. And it shouldn't. You know what the best way to figure out how to accommodate me is? Ask me. You know what the best way to figure out how to accommodate someone who doesn't show any outward signs of disability is? Ask them. There's no difference in the way you should treat someone.

And neither group has it "easier", either. I've experienced it from both sides, both with my physical disability (and it's resulting oddities in my body) and my mental health impairments. If you're more "out there" and visibly disabled, you get outright pity and ableist comments. If you're less visibly disabled, and need or choose to disclose your disability, you're accused of "faking it", or get similarly skeptical reactions, and you STILL get pity and ableist comments once people find out. Society pushes and indoctrinates people to "normalize" themselves and invisibilize their disabilities as much as possible, and then when they've expended time and energy and emotions jamming themselves as much into that "normal" mold as much as they can, they're accused of being fakers and benefit scroungers. It's not "better" to be one or the other, if such defined categories even exist. It's a different experience - just like all experiences of disability are unique. People with the same/similar impairments may relate to each other, and there is often a nice tribe-like feeling when you're with people who have the same impairment as you, but it's still a very individual experience.

In conclusion: The categories of "visible" and "invisible" disabilities are murky, at best, and only serve to further divide a very diverse and divided community. So let's all stop meebling about how hard it is to be visibly/invisibly disabled and how the other group has it so much easier, ok? Because it sucks to be visibly disabled sometimes, and it sucks to be invisibly disabled sometimes. And it can also be MIND-BLOWINGLY AWESOME to be visibly disabled, and it can also be mind-blowingly awesome to be invisibly disabled. They are both equal parts suckishness and awesomeness, just like any disability.

Sweet Is the Melody

2011-10-29T22:06:00.000-04:00

"Sweet is the melody,

so hard to come by

It's so hard to make every note bend just right

You lay down the hours and leave not one trace

but a tune for the dancing is there in its place."

-Sweet is the Melody by Aselin Debison

Hey hey, it's time for the October Disability Blog Carnival! Considering it's snowing where I live, it doesn't feel much like fall, but nevertheless it is and Halloween is just a few days away! I'm your friendly neighborhood spaz, here to host this lovely carnival with the theme of sweet is the melody! Get swept up by the music.....

Ettina over at Abnormaldiversity presents us with what I like to call a written music video to the Dixie Chick's Not Ready to Make Nice. Her writing is incredibly clear and descriptive and I could visualize the entire video in my head. I hope that someday someone makes that video for her.

Sharon at After Gadget writes a poignent post on how one song - Don't Leave Me This Way by the Communards - helped her cope with the death of her beloved service dog, partner, and friend, Gadget. I've never heard the song (probably because I'm a young'un!) but I can definitely see how the lyrics can connect with someone who has lost somebody important in their lives.

And Elizabeth at Screw Bronze writes about writing a happy song, about disability and ability clashing and coexisting, about not fititng into society's boxes. As someone who is also disabled and gifted, as someone who doesn't fit neatly into disability stereotypes, I can relate a lot to this.

Jen at SuicidalNoMore tells a beautiful story, of how a simple CD Discman brightened someone's day. Personally, I could not live without my Ipod and it helps me immensely when I'm going through an anxiety/depression episode and don't want to talk to anyone. Music gives me something to hold onto.

And what about me? I fully intended to write a post for this carnival, since music is something extremely important to me.   I play music almost constantly - if I'm on my computer, I will have Itunes or Pandora or Spotify open. I fully intended to write a post, and then everything came crashing down.

Let's back up a little. Last year was the most horrible year of my life.   I went away to college for the first time and became absolutely, postively terrified. I would cry for hours on end and as soon as I'd stop, it would be like someone flipped a switch and I'd start all over again. I went on like this for months until I finally got help and was put on anti-depressants. The medication finally made me feel like myself again, and although I still struggle with my anxiety and depression, for the most part, I'm a functional human being again.

Last year, when I was going through all of that, I put together a playlist of "Strong Songs". Songs that reminded me of who I was and who I wanted to be. Songs that reminded me that I was a strong, beautiful person, no matter what society and my own brain told me. Songs that brought back happy memories, memories of being with the people I care most about. The playlist grew and grew, and now it's up to 110 songs. It's not over yet, either. When I find a song that I feel belongs on the playlist, I'll add it. And when I'm having a bad day, when I'm crying and crying and crying, I put on my strong playlist to encourage me to be strong and get through it.

This past week was probably the worst anxiety/depression episode I've had since I was put on medication. I couldn't stop crying and I didn't even know why I was crying. I was curled up in a ball just wishing the feeling of intense sadness would go away. It's the reason why this carnival is slightly late going up, although now that I'm looking at the call for submissions, I must've anticipated this, since I didn't set the carnival date til the 1st of November. My friend Dani, who has mental health issues of her own, introduced me to this great song by Diana Degarmo called Emotional. When I was going through my episode, I had this song on repeat and was singing through my tears. So my choice of theme was very appropriate, because music helped me through my mental health issues last week.

Here's the link to my strong playlist on Spotify, not all the songs are on there, regrettably, because of Itunes/Spotify compatibility issues, but you get most of them. Feel free to take this playlist and make it your own!

Even if you didn't participate in the carnival this month, leave your favorite song in the comments. What song helps you get through the ups and downs of disability? What song or album do you have on repeat at the moment?   I know I'm not the only one who knows the truth of that old saying, music soothes the savage beast.

"Sometimes I feel like crying
Laying down and dying
That's when I need you
Laughing's always easy, but sometimes I'm just scared you'll leave me
That's when I feel emotional."

-Emotional by Diana Degarmo

Update on the blog carnival

2011-10-29T20:56:00.000-04:00

I psoted this a few days ago but just realized I accidentally posted it on Palsy Snark instead - oopsies! Um, so the blog carnival is obviously late going up. I have been having a lot of issues with my mental health lately and just haven't had the spoons, but I will start compiling the carnival now and hopefully will have it up by the end of the week! Thank you all for your patience!

Little Things That Piss Me Off

2011-10-04T17:42:00.002-04:00

To the girl who yanked her friend out of the way by her backpack straps when she saw me on my scooter heading in their direction. To her friend who then looked at me and went "Oh my god, I'm so sorry!" like she had committed a horrendous crime:

I use a wheelchair. It is a mobility aid. It is not a monstrous machine barreling, out of control, towards you, intent on flattening you like a pancake. It goes 4.5 miles per hour at it's fastest. I have been using my scooter since I got it over three years ago and at school, I use it every day. I know what I'm doing. Usually I'm careful enough that I don't run over people. But if I do, I will of course stop and apologize, and you will be okay. You will not melt into a pile of green goo like the Wicked Witch of the West if I happen to run over your foot or bash into the back of your ankles. I share the same sidewalk as you and should be afforded the same respect as any other student walking the paths on this campus, but that doesn't mean you need to go out of your way to scatter when you see me coming. I am quite content staying behind people until there's enough space for me to move past, just like anyone on their feet would do. How would you feel if you were coming down the sidewalk and people practically tripped over themselves trying to get out of your way? It makes me feel like I repel people, like you're afraid to get too close to me.

To the girl who exclaimed "I want a key!" when she saw that I have a key for my mailbox. To the same girl, who asked me if I had paid for it, and after I explained that I have a key because of my disability, let out a very disappointed "Daaaaaaaaaaamnn". I wish I could give you CP for a day and have you try those combination lock mailboxes. You don't know how much I struggled with my mailbox last year. How I'd avoid checking my mail because I just knew that I wasn't going to be able to open it. How I'd struggle with my mailbox for ten minutes before giving up and asking whoever was at the desk for help. How embarrassed I felt when it was halfway through the semester and I still couldn't open my mailbox. How I couldn't understand how everyone else just twirled their combination locks and their mailboxes magically opened. How I watched the desk staff open my mailbox for me and attempted to do the same thing only to fail again. How every day was Russian Roulette, a guessing game, thinking "Am I going to be able to open my mailbox today?" It may not seem like much, but having a key this semester for my mailbox has made my life on this campus infinitely easier. A key isn't something I paid or scammed my way into getting. If you want a key, you have to take the whole disability experience, the good, the bad, and the ugly. Take the mailbox key, the handicapped parking, the computer in class. But make sure you take with it the muscle spasms, the pain, the feeling that you are just the elephant in the room, in the way, and it would benefit everyone if you just left. Take the extra time and the cool wheelchair, but take with it the inaccessible bathrooms and the falling on your face. Take with it the stutter that sometimes makes it almost impossible to get thoughts out, and the people tripping over your legs because you can't keep them bent enough so that they're not in the aisle. Take it. Take it all. I'd be glad to give it to you for a few days, if you give me your typical body for awhile.

Why hello there, Blogger.

2011-10-04T11:01:00.000-04:00

It has been a long time, hasn't it? I've been busy cheating on Blogger with Tumblr, but never fear, I will always come back to Blogger when I have something of actual length to say. Which, sad to say, hasn't been lately. Such is the life of a college student.

ANYWAY. I'm hosting the October Disability Blog Carnival! Pieces of the June one are still languishing in my drafts folder, and I intend to actually put it up.....sometime. But onto October! My theme for the October DBC is sweet is the melody. How does music help you get through the tough times related to disability? What songs empower you? What songs remind you of the disability experience? As always, I welcome submissions off-theme as well. Please have submissions to me by October 25th and I will try my hardest to have them up by the first of November!! You can comment on this post with your link or email me at caraliebowitz@gmail.com. You can even send them to me through Tumblr if you like, I don't care. Happy blogging, everyone!

Post

2011-08-22T17:12:00.001-04:00

every discussion
every essay, every poem
every scrap and morsel of language
i search for her
the one who CAN
the one who rides her scooter feeling like a fraud
because she gets up and walks
the one who knows her crutches
could be tossed away
and for the most part,
she'd be okay
but just okay
the one who can pass
can do everything
who knows she'll
most likely never end up institutionalized
doesn't have to rely on anyone else
the one who gets struck down with deceiving labels like "mild"
who could so easily distance herself
if she wanted to
the one who hears ringing accusations in her ears
"you're a faker!"
"you're not really disabled!"
"oh you are, but not like them!
not like those poor broken people!"
and she's afraid that if she listens to them enough
she might start to believe them
i search for her
because in finding her, i will have found myself

CP in a Jar

2011-08-10T19:38:00.000-04:00

Inspired by A Jar of Autism.

What would it be like if I could scoop my CP up and put it in a jar like that little blue flame that Hermione jars in Harry Potter? It would be a fairly high commodity, I would think. After all, if you bought CP In A Jar, you would get all those “special” accommodations, like being able to type all your notes and being able to leave class five minutes early - a whole five minutes of NO CLASS! Of course, that’s assuming that you would even be able to get those accommodations, after doctors and therapists and everyone and their mother have said that yes, you do actually NEED those accommodations, only then will they relinquish them. And the doctors take forever to get back to you too, and none of them actually know anything about cerebral palsy, so you end up writing the entire letter yourself and having the doctor stick his/her signature on it. And even after you get those coveted accommodations, after you’ve struggled and cried for so many years trying to get them, there will still be people who tell you you don’t need them. Some of those people will be the very people who are supposed to help you. Do me a favor and direct those people to me. I’ll sell them CP in a Jar, so that they can know what it’s like.

And if you got CP in a Jar, then you could get one of those AWESOME wheelchairs (like a car!) and go, like, a million miles an hour (when in actuality it’s only 4.5 - I know, I’ve looked it up), and SIT ALL THE TIME. And all those unfortunate people who don’t have CP in a Jar will say “I wish I could sit all the time!” That is, of course, assuming insurance will cover the cost of a wheelchair, assuming the powers that be think your wheelchair is “medically necessary”. Never mind that the powers that be have never actually MET you and have absolutely no idea what YOUR life is like.

You’ll get your muscles surgically altered as a toddler (and become some sort of freaky superhero!). And you can whine and moan and bitch about how awful your life is and you’ll get all the attention for being such a special snowflake. You’ll fall on your face and everyone will rush to your aid like a knight in shining armor (or just step on you like floor pizza). People will wipe away a tear proclaiming how inspirational and courageous you are when you’re just trying to buy your food like everyone else. You might even get money, just for being your very special self and out of the goodness of the hearts of people who are so much more fortunate than you are.

But you have to be careful not to overdose on CP in a Jar. Of course, you wouldn’t want to become one of those people. Those people who have all those absurd needs. Those people who are always taking away from the normal people, greedy gophers that they are. They think they’re so entitled. Why are we giving them all those special programs and benefits? It’s not like they’re ever going to get a real job. Maybe work at McDonalds, if they’re lucky. God forbid, you ever became one of those drooling, gibbering idiots! And what if you were *whisper* retarded?? That would be so awful. The poor things, they must be so sad. No, you wouldn’t want to be one of them. But just a little bit, just a pinch of CP in a Jar, that would be nice.

*side effects may include intense muscle spasms, chronic pain, people assuming you’re drunk, and the feeling that you’re generally a broken, worthless human being, among others

Cerebral Palsy Is.....

2011-07-10T20:18:00.001-04:00

In the style of Being Autistic Is... and What Epilepsy Is...

Cerebral palsy isn't just "bum legs".

CP is being accused of "always being tired".

CP is consciously coordinating your muscles for every little task.

CP is falling over, and then having people step on you (literally and figuratively).

CP is being asked intrusive questions about your mobility aids.

CP is being accused of being lazy when you're too exhausted to move.

CP is feeling like you're being judged when you cancel plans because you're too exhausted to move or you know you will be after the event.

CP is constantly being in pain or discomfort.

CP is being terrified to go out in bad weather, because one gust of wind can blow you over.

CP is going the back way in life (literally and figuratively) because it's the only way that's accessible.

CP is feeling like you're a zoo exhibit everywhere you go.

CP is crying over at least one assignment every semester, because your spazzy hands screw up the assignment, it looks like a five year old did it, and everyone else is whispering about how easy it was.

CP is being told "Oh, I'm not looking for fine art!" when you tell someone you cannot draw.

CP is other people making assumptions about what you can and can't do.

CP is people assuming that physical disability is cancelled out by intelligence.

CP is being accused of "faking it".

CP is other people scrutinizing your abilities, when really they vary from day to day and situation to situation.

CP is everyone separating everything into "can" and "can't" with no gray area in between.

CP is always feeling like you're in the way and asking for too much.

CP is being the only person in the room with a mobility aid.

Feel free to add more! :)

Woah, wait, another blog?!

2011-07-03T17:18:00.000-04:00

I have now created my THIRD blog, a Tumblr called Flutterfly Invasion. Again, I will still be posting on Butterfly Dreams and Palsy Snark, but the Tumblr will be used more for bits and pieces, odds and ends, as well as things that DON'T directly relate to disability, although there will be some of that, too. So check it out and have fun! The June DBC will be up soon. I promise :)

The Carnival is Coming! The Carnival is Coming!

2011-06-23T10:45:00.000-04:00

OK, so I'm hosting the June Disability Blog Carnival, as you may know already. And the theme is community. I WOULD REALLY LIKE SUBMISSIONS BY THE 25TH, BUT I WILL EXTEND THE DUE DATE IF NECESSARY. So far only one person has submitted a post. So.....get writing! Please?

Redefining Inclusion

2011-06-20T20:43:00.001-04:00

I think we need to redefine inclusion.

Many people seem to have this inaccurate, and frankly, kind of bizarre, notion of what inclusion actually is. Case in point: this wonderful post about an ignorant teacher from Robert Rummel-Hudson, whose daughter, Schuyler, has a rare disability called Bilateral Perisylvian Polymicrogyria.

"...it was as if the concept of inclusion meant that Schuyler had a right to be parked in her class and to watch the other students, the REAL students, learn. Inclusion appeared to mean being a face in the class photo."

As a physically disabled student in high school, I faced this attitude on a regular basis. I frequently sat in the classroom feeling like an island as other students swarmed around me doing one project or another that was inaccessible to me. I had very few social interactions - no one ever asked me to join their group, and even when groups were assigned, the projects were usually motor-skill oriented, such as a poster. Once again, I'd be the island, sitting feeling lonely while everyone else was having fun. No one - teachers or students - ever asked me how the classroom environment could be more accessible to me. No one ever asked what my needs were and tried to meet them. No one knew what to do with me, so instead of asking, they simply did nothing. And yet, I'm sure if you asked any one of the administrators at my school, they would tell you that I was fully included for all six years I was at that school. I blame it on ignorance and lack of training.

Inclusion isn't about parking a kid with a disability in a classroom with no support whatsoever, and expecting them to succeed; or worse, expecting nothing from them so the kid becomes some sort of human wall decoration. It's about making the classroom environment accessible to everyone. It's about making sure that every kid who's in that classroom can and will learn, even if it's only one thing. It's about helping every child, regardless of ability/disability, succeed. I don't expect teachers to know right off the bat every single adaptation that they will have to make for every single student. Hopefully, as general education teachers get more special ed training, many of those adaptations will already be in place. But I do expect teachers to question themselves and their students so that the classroom is the most accessible that it can be. We must not simply include students with disabilities, but we must accept them, integrate them into our classroom, and embrace their potential, just like we should do with every student.

So yes, I think we need to redefine inclusion. Shout it loud, from the hilltops, from schools all across the globe, with all our unique voices, that inclusion is not a place. Inclusion is a practice. Inclusion is a right. And a weak, half-assed facsimile of inclusion is worse than no inclusion at all.

(Blog) Carnival Ride

2011-05-30T18:36:00.000-04:00

Well, after hosting the Disability Blog Carnival back in February, I'm back for another round. I'm hosting the June Disability Blog Carnival and the theme, I've decided, is going to be community. How does a disability community, or the lack of, affect you? How do you define a disability community? I'm excited to read all your posts! I'm a bit late in getting the announcement up this time around, so I'll give you plenty of time to write all your posts - I know how writer's block can get in the way. Try and have your posts to me by the 25th, but if you submit a late post, I'll add it in later. Comment on this post (I've disabled word verification for those of you who may have trouble interpreting it) or email me with your post at caraliebowitz@gmail.com. Or, if you have me on Facebook, you can also submit it to me that way. Any way you can get it to me is fine. Happy blogging everyone!

"God put us here on this carnival ride
We close our eyes
Never knowing where it will take us next
Babies are born and at the same time, someone's taking their last breath
It's the wheel of the world
It's the wheel of the world turning around."

-Wheel of the World by Carrie Underwood

Self-Care is a B*tch

2011-05-20T16:21:00.000-04:00

I never thought too much about self care before I went to college. Sure, some aspects of self care were more difficult for me, but I had been completely independent in all my self-care activities since my mid teens. Surely self care wouldn't be difficult for me in college, after all, I took care of myself every day. I didn't need a personal assistant like some of my friends, I could do everything on my own. Taking care of myself in college would be a breeze; in fact, I barely thought about it before I left.

Oh how wrong I was. Sure, at home, I did everything major myself - showering, dressing, etc., sometimes with the help of some adaptive equipment, like a shower chair or my awesome three headed toothbrush. But I completely didn't take into account the little things, or how the college environment differs from the home environment.

At home, the farthest I had to carry a plate was about five feet to the kitchen, and it was usually an empty plate at the end of a meal, and not a full plate at the beginning of a meal. In college, I had to navigate a crowded dining hall while carrying a full plate of food and usually a drink. If the dining hall was particularly packed, it could take me up to fifteen, twenty minutes to find a seat, and that's after my wrists started screaming in pain. The back dining room was often open for students on crowded days, but I had to navigate a long hallway while carrying my food in order to get there. That's not to mention that's after I usually stood in a long line for food, while my back, knees, feet, and ankles all ached in tandem.

.....And people wonder why I like to take my scooter to the dining hall a lot.

It's the little things that really get me. My first semester, I got sick. Nothing serious, just a bad cold. I went to the health center and they gave me a bottle of cough syrup. Stupid me didn't think to check if it was a child proof cap or not til I got back to my room. I spent over a half hour trying to open the damn cap before I had to go somewhere. I spent the next two hours hacking my lungs out during a play performance because I couldn't open the cough syrup! I eventually got it open only for a majority of it to spray all over. It literally looked like a massacre had occurred in my bathroom.

I didn't think taking care of myself would be hard in college. It turns out it kind of was. I didn't realize how accustomed I was to having my parents do things for me. I have now finished my freshman year and have learned a lot about taking care of myself. I am definitely a more independent person now. I look forward to carrying that knowledge into the rest of my college career as well as the rest of my life.

Please note that this post is for the May disability blog carnival. Happy blogging everyone!

New bloggy things!

2011-05-11T13:25:00.001-04:00

Hey all,

I would like to direct your attention to a brand new blog project cooked up by me and my friend Kyle. No worries, I'll still be posting on Butterfly Dreams, but I'll ALSO be posting over there on Palsy Snark. It's similar to this blog, except each post deals with a specific issue and has both of us awesome palsy people commenting on it. Sometimes we agree, sometimes we don't, but it's always interesting. So go over to http://www.palsysnark.com and follow us! We have a lot to say.

Also, I'm going to insert a shameless plug for a friend here. My friend Dani has been the best friend I've made in college, and she has a collection of diagnoses that even took ME aback for a bit. She recently started a blog at my urging and so far she's doing great! So go on over to Defying Disabilities and check her out! Follow her! She has a lot of opinions, some of which clash with mine, but hey, debate makes life interesting!

Watch this space for the theme for the June Disability Blog Carnival, hosted by yours truly!

My Little Ableist Friend

2011-04-19T12:47:00.008-04:00

Please note that this is my post for Blogging Against Disablism Day 2011 :) Happy BADD, everyone!

I have a confession to make.

I am an ableist.

Yeah, that's right, Spaz Girl, Miss Out-and-Proud-Disabled, Miss Cripple Power, is an ableist.

It's a dirty little secret of mine. It's a little voice in the back of my head that I carry around with me all day, and can't get rid of, no matter how hard I try. A voice that says things like "You're not really disabled.", "You're just making excuses.", "You don't need those crutches/that scooter/this accommodation/that accommodation.", "You're exaggerating your disability.", "Who knows? Maybe the doctor's diagnosis was wrong all these years and you've just been faking for the last 18 years.". It's a little devil on my shoulder telling me that I'm not worthy to be a crip.

My little ableist friend makes me feel inadequate, shamed, and embarrassed almost everywhere we go. I try to keep him gagged, but every once in awhile, he spits out the gag and starts struggling against his bonds, demanding to be free. He reared his ugly head just a few days ago, when I failed a math project that involved measuring, drawing, folding, and visualizing 3D images - all things that I have trouble doing because of my CP. When I approached the professor about it, she mentioned that I should've come to her before about it. I stood there wishing I could sink into the floor while my little ableist friend laughed maniacally on my shoulder. How could I explain to her that I didn't want to come off as making excuses on the basis of my disability? How could I explain that I had already talked to her about another project (this one involving using a drawing compass), and didn't want to be demeaned for "seeking special treatment" in the class? How could I possibly explain that my little ableist friend had convinced me that I could do it, that it really wasn't as bad as I was making it out to be?

It sounded absurd, even in my head. But that's what my little ableist friend does - he takes the absurd, fuses it with some self-doubt and shame, and twists it around so it almost kind of sort of makes sense. And if I listen to him too long, I start to believe him. He takes all my insecurities about being "mildly" disabled that have been hard-wired in me since I was little and exploits them. He makes me feel like a fraud.

It's because of my little ableist friend that I grew up alone, never knowing other people like me, never having any disabled role models, never knowing that there was a whole other world out there. My parents were duped into thinking that I was "too mild" for activities designed for disabled kids. Even when I started attending a camp for kids with physical disabilities when I was 13, I was one of the only ones with my level of mobility and independence, and I could hear my little ableist friend in the back of my head, telling me I didn't belong. I eventually silenced him enough to discover I really did belong, and the six summers I spent at camp were absolutely amazing to a level I can't describe. But every once in awhile, even at camp, my little ableist friend would return. People make assumptions based on the fact that I don't "look" that disabled, and that's my little ableist friend's ideal breeding ground. Every time someone makes an assumption about how far I can walk, how much I can stand, what (if any) mobility aids I should be using, he pops up to accuse me of being lazy and taking advantage of my disability to get special treatment.

My little ableist friend is a chorus of all the voices that have shamed me over the years for being who I am. He is a reflection of a society that worships physical strength and beauty, a society that puts labels like "brave" and "inspirational" on anyone who pushes themselves through pain and/or fatigue to walk that extra step, run that extra mile, climb that extra mountain. Well, I'm sorry, but I don't want to spend my whole life in pain, trying not to complain, knowing people will see me as weak. It's a constant battle against my little ableist friend, a battle I fight every hour of every day. It's bad enough when I have to face other people's judgments and opinions, but when I start to internalize them....that's the scary part.

I am an ableist. That is not easy for me to admit. So here I am, exposing my little ableist friend to the public, hoping that in the harsh glare of the Internet, he will wither and die. It's a far-fetched hope, I know, but hey, I can dream. Maybe you know exactly what I'm talking about. Maybe you have a little ableist friend of your own. If you do, my heart goes out to you. Please know that you are not alone in this internal fight, you are not the only one fighting it. Perhaps if we band together, we can defeat our little ablelist friends together.

BADD to the Bone!!!!!!!!

2011-04-18T08:35:00.002-04:00

It's that time of year again, folks! Springtime, flowers, finals......and of course, BADD!!!

What is BADD? BADD stands for Blogging Against Disablism Day. Every May 1st, the awesome Goldfish hosts BADD, a collection of posts all relating to disablism/ableism in one form or another. For those of you who don't know, disablism, also called ableism, is basically discrimination on the basis of disability/ability/whatever the hell you want to call it. It's similar to racism/sexism/etc. This will be......I think my fourth year participating? Yes, four years of being BADD to the bone! Below are the links to my last three BADD posts:

2010 - Harry Potter and the Disability Invisibility Cloak

2009 - Special People, Normal World

2008 - Blogging Against Disablism Day - A Day Late!

Anyway, I'll be tweeting on Twitter (is that redundant?) all about BADD with the hashtag #badd2011 (all credit for anything BADD related goes to the Goldfish!) Follow me and share with me YOUR BADD posts! I can't wait! Hope to see you all there on May 1st!

What I Want You to Be Aware of on CP Awareness Day

2011-03-25T00:00:00.001-04:00

Today, March 25th, is Cerebral Palsy Awareness Day. As a CPer, here are some things I want you to be aware of:

Many of the videos on Youtube dealing with CP Awareness Day focus on research. I want you to be aware that I do not want research. I do not want a cure. My body is perfectly whole just the way it is. I have had CP all my life, and I don't know any other life. For me, this is normal, and it is so intertwined with the rest of me that it would impossible to separate it.

I want you to be aware that CP is hard. I don't deny it. It is painful and yes, even saddening sometimes. But my life is not a tragedy, and I am not some tear-filled damsel in distress. I am the strong and spunky heroine of my own story, and I decide how the story goes.

I want you to be aware that CP isn't as cut-and-dried as you think it is. CP affects every person in a different way, and just because I don't fit your stereotype doesn't mean that I'm faking or exaggerating my disability. I don't want to face your misguided assumptions and accusations. Who are you to pass judgment on my life, anyway?

I want you to be aware that I have the same rights as every other human being on this planet. I have the right to go to school, to live at home, to have sex, to bear children, all rights that you have tried to take away from me. And though you expect me to be meek, passive, and perpetually grateful as you slowly strip my humanity away from me, I will not. I will fight with my last ounce of strength to regain the things I have lost.

I want you to be aware that I have a mind. I have a voice. And though that mind may not think the same way as yours does, and that voice may not speak the same way yours does, I still have a mind, and I still have a voice. I am still human - no more or less human than you are. I am not a simpering, whimpering perpetual child, nor am I an all-knowing God-like creature able to rise above any and all obstacles in my life. I am simply human.

I want you to be aware that no matter what you think, you do not have a f***ing clue what my life is like. I don't care if you have a brother, a sister, a friend, a significant other with CP, you will never know the reality of living in my body day in and day out. You do not know the pain, you do not know the joy. And for you to propose you do is simply ludicrous.

I want you be aware that I exist. I sit, I spaz, I slur, I stutter, I drool. I do all those things in your schools, your community, and your society, I do them right in front of you, though you pretend not to see. These are all things I cannot control, and I should not be made to feel ashamed for the way my body works. I should not be pressured to hide my body and "normalize" myself as much as possible. I should not have to hide my CP in order to be accepted and loved by society. If you cannot love me with my CP, you cannot love me at all. I exist - and I should not feel like a burden for existing.

Cerebral Palsy Awareness Day: March 25

2011-03-06T19:36:00.002-05:00

Spaz in solidarity with me, my friends. I have just discovered that March 25th is Cerebral Palsy Awareness Day. This is an excellent opportunity for the world to hear our voices and realize the particular issues that individuals with CP face. I've started a campaign on Twitter - retweet #cpawarenessday to show your support and we could get some major awareness going!

Also, I was thinking of making this into a blog event. I noticed several bloggers blogged on this topic on CP Awareness Day last year - it would be REALLY cool to do a BADD-esque roundup. So...if you write something for CP Awareness Day, send it to me, and we'll have a Cerebral Palsy Awareness Day Blog Event! :D Hope to "see" you all there!

Able Privilege Checklist

2011-02-13T14:43:00.002-05:00

I stumbled across the Thin Privilege Checklist today and practically fell over in glee. It's perfect, absolutely perfect, and it's based on the White Privilege Checklist by Peggy McIntosh, which is equally brilliant. I found several checklists of Able-Bodied Privilege here, here and here. However, I figured I'd have a go at it. Note that my checklist is written in the second person, as in "you" this, "you" that, because I am not able-bodied and feel that it would be a bit presumptuous for me to imply that I know what it is like to be Able and have Able privilege. If anything that I say in this checklist is misinformed or untrue, please feel free to contact me and we can discuss it. So.....without further ado, here is Spaz Girl's Able Privilege Checklist!

As an able-bodied person, every day:

You can get from point A to point B without worrying about how you are going to get there and how much energy each travel option will cost you.
You can say "I'm tired." and not be criticized for "always being tired".
You can get inside all buildings by the main entrance, and will never be forced to go around a sketchy back entrance or denied entrance to the building while others pour freely in and out of the main entrance.
You can go and come as you please, without everyone and their mothers knowing the meticulous details of where you are going and what you are doing.
You can blend into the crowd reasonably well and do not constantly feel like you have a neon sign over your head saying "different".
You can draw, cut, and do an assortment of motor-skill related things without putting much thought into it, and your final product probably will not look a kindergartener did it.
You can have privacy in the bathroom.
You can do something ordinary or out of the ordinary without being called "brave", "courageous", "special" or "an inspiration".
You can open a door without putting thought into how you are going to do it.
You can go out in public and will not be accosted by a variety of tired, cheap car jokes scuh as "Do you have a license for that thing?"
Parts of your body are usually not grabbed, touched, and pulled without your permission.
Parts of your body (or extensions of your body) are not referred to as "that thing".
You can easily step over bumps in the sidewalk, massive snow piles and other obstacles without having to have the concentration of a tightrope walker.
You can eat without the concentration of a tightrope walker and most of the food will end up in your mouth.
You can get your own food and carry it to your table without the concentration of a tightrope walker and will not be exhausted from the effort before even taking a single bite.
You know that you are not considered "abnormal".
Your mobility relies on the power of your legs, and your legs alone. As such, you will never be stranded somewhere because of a dead wheelchair/scooter battery.
You can look into people's eyes without having to crane your neck upwards.
You are not at the level of other people's butts.
You can go for an interview or other professional experience without fear of being judged on your perceived ability.
You can go out in public without being stared at and asked rude questions.
You do not live in fear of being institutionalized.
You are not told, directly or indirectly, that you are "too self sufficient".
Other people do not try to speak for you and you speak for yourself.
You are not made to feel, on a daily basis, by other people's attitudes, actions, and outside barriers, that you are not wanted and your opinion is not valued.
You can open a magazine, watch a TV show, or look at a textbook and see many diverse people of your ability represented.
You are not expected to be meek, passive, and perpetually grateful.
You rarely have to accept help and charity from other people.
It is not suggested, either implicitly or explicity, that you would be better off dead.
You do not feel like part of a dying species.
You can be pretty much positive that wherever you go, you will not be the only Able person.
You are not made to feel like a bad, lazy person for not pushing yourself to exhaustion.
In public, people talk to you, not the person you're with.
You can be out in public with another Able person without causing a disturbance simply by the presence of two of you.
People of your ability are usually in the majority.
When you go to a movie theater or concert, you can sit in any seat you want.

Feel free to add more and/or ask questions if something is unclear!

On Bullying and Disability

2011-02-08T17:26:00.008-05:00

I'm in the middle of writing a post about my experience at this year's Reelabilities Film Festival, but the words aren't coming to me lately. And another issue has come to my attention that is much more serious and that I feel I need to talk about.

In the past week, two of my friends have been the target of nasty, cruel, disablist/ableist cyber-bullying, one on Formspring, and one on Youtube. Needless to say, THIS IS UNACCEPTABLE. Although there has been much discussion about cyberbullying/bullying in the media lately, especially about bullying directed towards LGBTQ youth, there has been almost no discussion of the thousands, maybe even millions of youth that are the target of disablist/ableist bullying EVERY. SINGLE. DAY.

I was bullied, both on and offline, throughout seventh, eighth, and even ninth grade. While most of the bullying wasn't strictly disability-related, I do think my disability played in a part in making me an appealing target for bullies. Bullies go for people with disabilities because there's this underlying assumption that we can't fight back. And certainly that is true to some extent. The idea of me ever being in a physical fight was (and still is) laughable. The most I could ever do is hit someone with a crutch, and the momentum of the swinging crutch plus not having a crutch to lean on would probably unbalance me so much I'd fall over. But never underestimate us, because someday, somehow, we will fight back. Just look at ADAPT and similar large disability organizations - how much change they've been able to enact, how they've fought back against obvious and latent disablism/ableism.

Some of the bullying I went through WAS disability-related, however. I will never forget one IM conversation with a classmate of mine who shall not be named. Out of the blue, she goes: "You thought you could get all the attention just because you have a disability." I was very hurt and completely shocked. I don't even think I responded to the IM, because I couldn't think of WHAT to say. I was also accused of "faking it" once. Although it wasn't to my face - because the girl was too much of a coward to accuse me to my face - I think the accusation went something like this: "She [me] walks fine, and then when people are around she pretends to fall." Once again, I was completely shocked and disgusted.

Why do people use disability as an excuse to bully people? I think because, similar to LGBTQ people being sensitive or closeted about their sexual orientation, especially in those middle school stages when admitting you're different is akin to social suicide, disability can be a sensitive spot. Our society indoctrinates people into thinking disability is badbadbad. In middle school and high school, all you want to do is fit in, and fitting in is very difficult when you get "special" accommodations. Even more difficult when you are "visibly" disabled, which is why a lot of kids with "mild" disabilities try to minimize their disabilities as much as possible. Disablist bullying reaches right into the deepest and darkest insecurities we have, the ones we'd never admit out loud when we're being crippled and proud, and says "You're not normal, and that's wrong." No matter how proud I am of being who I am, there are still my moments where I feel like a freak, and not in a good way.

Especially with "mildly"/"invisibly" disabled people and being accused of "faking it", I think that hits a particular nerve. Because I know all my life, deep in the back of mind, there's a little voice that's said: "Maybe they're right. Maybe you're just lazy, maybe you could do a lot more if you just tried harder. Maybe you could walk that extra block, maybe you could stand a little bit longer. Maybe you've exaggerated your CP all this time." So to have that voice sort of validated is never a pleasant thing. A post will be coming at some point about the unique issues those of us with mild/invisible disabilities face and how thin the line is between disabled and able-bodied is in some circumstances.

More so then any other type of bullying, disablist/ableist bullying is accepted in our society. Just like the heterosexual bias that is built into our society, there is also what can be called an "ability bias". It is assumed that everyone can (and does) walk, everyone can (and does) climb steps, everyone can (and does) drive. So disablism/ableism and disablist/ableist bullying often flies under the radar, because those with the social privilege of being non-disabled don't even consider a life that doesn't have that privilege. Words like "retard" and "cripple" (used derogatorily) don't carry the same weight, the same power, as, say, the n-word (even though they absolutely should). And because so many disablist terms are used as part of slang ("that's retarded", "I'm, like, OCD about it", "I feel so ADD", etc.), I think there's a general sense of kids-will-be-kids, and teachers and other authority figures are inclined to just brush it off. But words hurt. I know it sounds cliche, but it's true.

So what can you do if you or someone you know is the target of disablist/ableist bullying? First and foremost, speak up! Tell your parents, your teacher, your principal - whoever you feel comfortable with - until someone takes you seriously. If the bullying is occurring online, save everything and print it out. On AIM, I know there used to be an option to save your IM conversation as an .html file, I don't know if it exists anymore. If there's not a save option, highlight the whole conversation and copy and paste it into a word processing document. People will take you a lot more seriously if you have written evidence of the bullying, and it's a lot easier to show people the comments word for word instead of trying to paraphrase.

Try and avoid the bullies whenever possible (obviously). Take steps to ensure they can't bother you again. When I was cyber-bullied, I blocked the screennames of the kids who were harrassing me from my buddy list. Eventually, because of the cyber-bullying and other reasons, I created a new screenname entirely and was very careful about who I gave it out to. Only give your online screennames and usernames and whatnot to people you trust and who you know you are actually going to talk to. If people ask you for your screenname and you're uncomfortable saying no, give them a fake one, or give them an old one that you never use anymore. Delete your facebook/formspring/youtube account if you have to. You can always create a new one.

And most of all, surround yourself with positivity. As I recently said to a friend, the good people in this world far outnumber the stupid people. Surround yourself with friends and family, people who care about you and will always be there for you. When you've got that many great people around you, suddenly one or two bullies seem a lot less significant. If anyone reads this post and wants to share their experiences being bullied, feel free to comment or contact me privately at caraliebowitz@gmail.com.

And if anyone wants to head over to my friend Nicole's Youtube account, I highly encourage you to watch her awesome videos about living with a disability and leave her some POSITIVE comments for once! :)

Looking Back On The Road Behind Me

2011-01-30T20:45:00.002-05:00

And looking to the long road ahead. This is an essay I wrote for a friend of mine who, as part of her internship in the Disability Services Office, is putting together a booklet for high school students transitioning to college. Once I sat down to write it, it just flowed. Transition to college (and people writing about it) seems to be a theme in my life lately, and I think it might be the universe's way of telling me that things are better now and I can look back on the road behind me and talk about it now. Remember a few months ago when I said that someday I would write a post about my identity as a college student? Well...I think this might be it. Hope you enjoy!

The day my parents left me at college for the first time, I couldn’t stop crying. Despite months, and quite frankly, years, of asserting loudly that I was sick of high school and couldn’t wait to get to college, once I actually got there and my parents were about to leave, it was a whole different story. It was like being plunged into ice cold water – I had been warned the water was cold, but once I dove in, I was utterly shocked and completely unprepared. I don’t think I can remember being as scared as I was that day ever before.

The crying continued for weeks, and then months. But in between periods of extreme sobbing, I learned some valuable lessons. Although I had theoretically been fully independent in my daily activities since my early teen years, doing everything myself, day in and day out, with no parents around to help me, was exhausting, especially since I have limited stamina to begin with due to my cerebral palsy. I have muscle weakness in all areas of my body, as well as problems with depth perception and sense of direction. All of a sudden, I was on my own. It was the little things that got me – I remember one day I spent almost a half hour trying to open a child proof cap on a bottle of cough syrup, only for my unsteady hands to send the medicine flying once I finally got the cap open. Once, I got lost in my own dorm. Getting my own food, carrying it to my table, and then eating it without spilling anything on my clothes was a daunting task. Putting independence into practice was more difficult then I had thought.

Things were also tough because I was using my motorized scooter more than ever to get around campus. Before college, I had only used the scooter on occasion, if I was going somewhere that required walking long distances. Going from someone who was fairly independent walking, to someone who was almost a full time wheelchair user, was a bit of an adjustment. All of a sudden curb cuts, ramps and elevators became ten times more important. In the beginning, I would discreetly attach myself to a group of kids who seemed to know where they were going, only for them to disappear down a flight of steps, leaving me lost again. Automatic doors were a godsend – when they were working, and most of the time they weren’t. As a result, I became very adept at opening doors from my scooter. Living most of my public life at the level of other people’s butts and waists was also interesting. Oftentimes, people wouldn’t see me, especially cashiers at a counter designed for someone standing. When they did, they would give a little gasp – “Oh!” – and nimbly leap out of the way, or yank a friend out of my path as though they thought I was intent on purposely running them over. On occasion, people absorbed in texting would fall in my lap. Unfortunately, none of the males were that good looking or we could’ve had the start to a great romantic comedy. It made for some hilarious moments, especially when I realized I spent most of my time apologizing to people who should really be apologizing to me for not looking where they were going.

Before I knew it, my first semester of college was over, and although I was still crying and homesick, I was a changed woman. I had learned many lessons, and most of them weren’t from the classroom. Two weeks ago, I came back to campus after winter break, still scared, still crying, and still reluctant for my parents to leave. But I knew more now. I knew my way around campus. I knew how to carry a tray of food without dropping it. I (sort of) knew how to open a child proof cap, and if I didn’t, I knew to ask for my medicine to be put in bottles with non child proof caps. I knew when to ask for help. In the two weeks I’ve been back, I’ve already learned some new lessons (like scooters and snow don’t mix), and I’m sure the learning experience will continue throughout my college experience. I may not be your average college student, but it’s the unexpected things that spice up life, and besides, who said being average was any fun?

Nitty Gritty Dirty Little Freaks!

2011-01-17T13:35:00.008-05:00

Hey all, I would like to formally extend my warmest welcome to the first Disability Blog Carnival of 2011!! I'm your host, Spaz Girl! In case anyone is keeping track, this would be DBC #73. The theme for this month was Let Your Freak Flag Fly and I would like to sincerely thank all the bloggers who unabashadly let their freak flags fly this month! Shall we get on with the blogging, then?

We start off with great posts from alumiere and my friend, the wonderful Krista Marie Simeone, both describing their own personal experiences with freakishness, and how they learned to proudly fly the freak flag. Krista says:

"When I was a child, my freak flag was worn on my sleeve, and I shared it with everyone. At puberty, my freak flag was half-mass and defeated. In high school, my freak flag was hidden deep in the closet of my soul under a perfectionist attitude and a sense of humor. And today, I let my freak flag FLY, with a true appreciate for where I've been, what I have overcome, and who I am today."

Next we move onto anger, rightousness, and general badass-ery from Cereus Sphinx and Cheryl. Both posts display a willingness to stand up (or sit down) to traditional attitudes about disability, and the boldness to wave the freak flag in people's faces. Cheryl draws a parallel between the disability rights movement and the black civil rights movement by saying:

I don't know how people viewed Black Civil Rights leaders during the 1960's, when everything was going on. I wasn't around in the 60's, I'm 25. I imagine things were viewed differently depending on which geographic region of the country you resided in at the time. What I do know is that now, in 2011, and for at least the last 20 years, Malcom X, MLK, Nelson Mandela (yes, I know he's not American) have been regarded as national heros, while I am regarded by some people as a freak.

Next we have dawning realizations from the Goldfish and my very own mother, who goes by yoko75 on her brand-new blog. These posts show the incredible transformative experience of disability, and how one shift - in thought or in life experiences - can strip away the layers of denial and reveal that we really are freaks after all. Yoko75 shares her experiences in raising me and my sister:

"My children had been born with obstacles to skirt around, and together we fought the dirty looks, the pitying smiles, the ignorance and the patronizing words. I began working with other children who needed advocates in their lives, someone who could relate to their own unique freak shows. There is nothing in this world that I would rather do than spend the day with people who do not judge me, freak or no freak."

Deviating from the freak show for just a moment, I received two posts that, while they don't exactly fit the theme, still explore the phenomenon of being disabled and illuminate what a complex and beautiful experience it is. Coy Carp writes a strikingly honest post about disability and domestic abuse. And another post from Cereus Sphinx discusses the relationship between stoicism and disability, specifically SM and Hypersensitivity/Aspergers. Cereus Sphinx explains:

My experience with SM and Hypersensitivity/Aspergers actually are mutually beneficial because they both show how to enjoy myself even if it means doing something different than other people find enjoyable. I can put a soft limit on sustained social interaction and noisy places (and cold :( ). I can fully enjoy 100+ temperatures. My body can perform miracles, It Comes First. No matter if what it wants is not what it's supposed to.

And....we now return to your regularly scheduled freakout! As we near the end of our carnival, I share with you two posts that are poignant and extremely touching. Rickismom simply shares an event she recently witnessed, a display of outright freak pride and courage not to care what anyone thinks - courage I wish I had. Meanwhile, Ettina describes her freak flag - a metaphorical wall - that has protected her throughout her life. Says Ettina:

"This wall isn't a bad wall, like the one in Pink Floyd's album. I can put it away when I'm safe, so I can accept love and caring. It's a good wall, that shields me from damaging attitudes...That wall is necessary. Without it, the bad outside would touch the good inside, and damage it.
The wall leaks, unfortunately. And sometimes it blocks good things from coming in, like when I have a meltdown. But it's much better than letting everything in, like I used to do."

Last, but hopefully not least, we have my post, about the reasons behind why I call myself a cripple, as well as gimp, freak, and other "taboo" terms. Once again I would like to sincerely thank everyone who participated in this month's carnival. You have made me proud to be disabled.

"So raise your glass if you are wrong
In all the right ways, all my underdogs
We will never be, never be anything but loud
And nitty gritty, dirty little freaks
Won't you come on and come on and
Raise your glass!
Just come on and come on and
Raise your glass!"
-Raise Your Glass by Pink

On Being A Cripple

2011-01-08T11:49:00.010-05:00

Title taken from Nancy Mairs' essay, "On Being A Cripple", all credit for the title goes to her and her wonderful writing.

People shudder when they hear me call myself a cripple. "Don't say that." they say. "Don't you ever call yourself a cripple. You're not a cripple." What people don't understand is that cripple is a term of pride, a way of defining ourselves, a way of taking back words previously used against us.

By calling ourselves cripples, freaks, and gimps, we identify with those who have come before us, those PWDs who were not as fortunate as us. We remember those who were hidden away, murdered by their parents, or trapped in institutions, those who never reached their full potential because of society's fear of disability. We remember a time not so long ago when people "like us" didn't have any rights, were in fact prohibited from showing our faces in public. We salute those early pioneers in disability rights, who fought for the right to get on a bus, get an education, and be productive members of society.

By calling ourselves cripples, we define ourselves. We expose ourselves, our bodies, and our community, strip away all the layers of political correctness until all that is there is bold and shocking. It confronts people, it forces people to reevaluate their ideas and preconceptions. We choose words like cripple, spaz, gimp, and freak to describe ourselves. We willingly take on these antiquated words, because in the choosing, we gain our freedom. We choose these words, instead of having others choose for us. We make that choice because it is one of the few choices that we have. In a time when we cannot even choose to live at home instead of an institution, we can choose the language we want to describe ourselves.

I call myself cripple to align myself with a community I never knew I had. I call myself cripple to pay homage to all my crip role models whose ideas and writings influenced me and shaped my views on disability and the world. And in some ways, I call myself cripple to constantly remind myself that I belong in this world. As a person with a "mild" disability, so to speak, I've spent much of my life feeling like I'm "on the fence" between the able-bodied and disabled worlds. Society pressures those of us with "mild" or less visible disabilities to conform to the norm as much as possible. I could've done that - skated by with little or no accommodations, denied my heritage as a disabled person, and tricked myself into thinking I was "normal". I've met people who have done that, and it is much more societally acceptable to do that than to let your freak flag fly with all your might. But my life led me down a different path, and now that I've seen the other side, I can't ever go back. But there's still that little voice in my head sometimes that tells me I'm not "really" disabled, that I'm just using my accommodations to be lazy when I don't really "need" them. So in some ways, I call myself cripple and use walking aids to remind myself that I AM disabled, and I am part of a community with a rich and vibrant culture and I have as much right to be a part of that community as anyone else with a more "severe" disability.

I call myself cripple to describe myself and only myself. I would never use it to describe someone if I knew they preferred not to use that word. It is my choice and I ask that you respect it. Thank you.

(btw, the DBC will be up sometime tonight, I swear! Promise! I do apologize for the delay.)

Disability Blog Carnival: second call for submissions

2011-01-03T11:39:00.003-05:00

I meant to post this on New Year's Day but time got away from me. As you may already be aware, I'm hosting the January Disability Blog Carnival. The theme I have chosen is LET YOUR FREAK FLAG FLY, and the deadline is January 17th, although I'm flexible with the days. Head over to my original post on the topic for more info on that. Happy blogging!!

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

2010-12-15T19:38:00.005-05:00

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

2010-12-13T10:39:00.008-05:00

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

2010-12-03T08:29:00.007-05:00

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!!!

2010-11-16T12:04:00.003-05:00

My post for the November Disability Blog Carnival. Enjoy!

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"

2010-09-26T17:19:00.003-04:00

....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

2010-09-08T19:25:00.006-04:00

....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.

"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!

2010-08-25T16:42:00.002-04:00

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)

2010-08-20T14:18:00.003-04:00

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

2010-07-31T18:35:00.000-04:00

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?

It's not that simple.

2010-07-21T22:05:00.001-04:00

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!

It's Our Story

2010-05-10T20:39:00.001-04:00

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

2010-05-01T15:11:00.001-04:00

*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...

2010-04-20T13:54:00.001-04:00

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

2010-04-05T09:11:00.000-04:00

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

2010-03-03T16:12:00.000-05:00

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".

2010-02-28T19:13:00.000-05:00

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.

Special People, Normal World

2009-05-01T16:05:00.000-04:00

Please note that this is my post for Blogging Against Disablism Day. Yes, I know what you're thinking: "Huh? BADD? Already?". I know-I was shocked too. Time flies when you're having fun! Or when you're a stressed out high school junior obsessing over SATs! So, without further ado...my BADD post.

Recently, I got an email through my cerebralpalsynetwork Yahoo group about a new "faith based reality show" about people with disabilities. Naturally, I was interested...until I clicked open the email and saw that the title of the show was "Special People, Normal World".

The name alone made me want to bang my head against the table. It's obviously a horrible play on the name of the popular reality show "Little People, Big World" which deals with disability issues sometimes, since both parents and one of their four children are little people. Now, don't get me wrong, I love "Little People, Big World"; it's one of my favorite shows. But "Little People, Big World" doesn't focus entirely on disability. And it doesn't try and hide it, either. Disability is simply THERE, and if it comes up, it comes up. I like that. This new show doesn't seem to have any of those qualities I just mentioned...it's completely focused on disability. Which is not necessarily a bad thing, if disability is portrayed in the right way.

I want to talk more about the name. The word "special" makes me cringe. I know I've talked about this on this blog before. One of the definitions of "special" from dictionary.com is "extraordinary; exceptional, as in amount or degree". This makes me so angry; it's exactly the opposite of what disabled people have worked to achieve. We're trying to NOT stand out in society, we're trying to fit in! We all have our differences, true. But, in the immortal words of my favorite Trisha Yearwood song: "With all these ways to be different, then maybe that's how you fit in". When people call us "special", they're singling us out. We might as well have a big blinking neon sign above our heads that says "freak". And the contrast of the name-"Special People, Normal World" seems to imply that we are NOT normal, and we never will be. The word "normal" is disturbingly subjective. In my opinion, I AM normal, in my own way. CP IS normal for me. The title of this show seems to be pointing a finger at us, telling us that we're not normal, and it's not right for us to not be normal.

So with all that in mind, I proceeded to go to the website and watch the "sneak peek" of the show.

Kristi, the host of this show, starts off the sneak peek with a description of her own experiences raising a child with a mitochondrial disease. She says: "Doctors were telling me to take my angel home...and love her for the way that she was...I refused to accept this for my daughter." Obviously she didn't mean the comment to come off this way, but it seems like she's saying that she cannot love her daughter the way she is...with a disability. Once again, there's that feeling that there's something inherently wrong with being disabled. There's NOTHING wrong with being disabled! To quote the great Neil Marcus, "Disability is not a 'brave struggle' or 'courage in the face of adversity...disability is an art. It's an ingenious way to live." Whatever our disabilities may be, it's just the way we are.

One more thing about the sneak peek upset me. One aspect of the show consists of Kristi meeting other families who have children with disabilities. She brings up the example of "Garrett...a little boy who refuses to give up on his fight with cerebral palsy". I hate the phrase "fight with cerebral palsy". I don't know how it is for other disabilities, and I cannot speak for any CPer other than myself, but personally, I don't feel I'm "fighting" against my CP. My CP is part of me and I love having it. I wouldn't trade my CP for anything. I do not have to "overcome" my disability (another word I despise). What I'm fighting against, what I have to overcome, is people's misguided attitudes and stereotypes about me.

What really annoyed me were the comments on Special People, Normal World's Facebook page. Everyone seems to be praising this show without a thought to how disabled people are portrayed on it. The Facebook page proclaims "It's about time!" for a show like this. Yes, it's about time that a show focusing on people with disabilities is created. But "Special People, Normal World" is propelling negative attitudes and stereotypes about people with disabilities, and that's not right. A show that spouts that kind of misguided crap is worse than no show at all. And that's why this new "faith based reality show" is worthy of my BADD post. This show is blatant disablism, whether the creators of the show realize it or not. I will not support the show just because it is about disabled people. When it starts portraying people with disabilities in a more truthful light (and quite possibly get rid of that godawful name), that's when I'll say "It's about time".

The R-Word Campaign: Spread the Word to End the Word

2009-03-02T14:52:00.000-05:00

OK, so I know I haven't blogged in a really really long time, but I'm sorry. I just emerged from an avalanche of homework.

So. Onto the R-word campaign. I've been involved informally in the R-word campaign for years, but *thank god* people are starting to take it to the next level. Anyway, March 31 is The First Global Day to Eradicate the R-Word. For more info, go to http://www.r-word.org/. The R-word (retard) is incredibly insulting to not only people with intellectual disabilities, but those who care about them.

I know BADD isn't until May, but can we have a Blogging Against the R-Word day on March 31? Please, if anyone is reading this, please blog against the R-word to show your support for the campaign! And if you don't have a blog....write a Facebook note, make a video and upload it to youtube, anything to show your support!

NaBloPoMo and a Crippled Halloween

2008-11-03T18:45:00.001-05:00

To start off this lovely post, I must inform you all that I have stumbled/wobbled/fallen over National Blog Posting Month (NaBloPoMo). This is, quite simply, where you attempt to blog every day for a month. Since I'm a couple days late for November, I guess I'll just go til December...umm...December...what day is it again? Oh yeah, the third. Yeah, so I'll go til December 3rd. I won't be eligible for any fancy prizes or anything, but I don't care. I'm going to be absolutely astonished if I actually manage to do this. No, make that...what's a stronger word than astonished? Shocked? Bowled over? (I'm bowled over by a breeze, if you're thinking in the literal sense, so that's not the best one...) Wow, my brain's really on today, isn't it? Now I'm tired. I'll tell you all about my crippled halloween tomorrow. With the amount of homework I'm getting at the moment, I deserve some sort of trophy if I manage to blog every day for a month.

A post of NOTE...

2008-10-28T18:51:00.000-04:00

I've been having issues with notetakers lately.

I hold a pen very awkwardly due to my CP, as I think I mentioned here before. As a result, I write slowly and I get bad hand pain when I write. I usually use an AlphaSmart to type my notes, but obviously I can't do that in math. So I have a notetaker. In past years, all of my notetakers have been more than happy to do my notes, and I've had no problems. Not the case this year.

First of all, it took my math teacher a week just to find me a notetaker. That in and of itself was annoying. She picked a girl who sits two seats behind me, which was also slightly annoying, because then my notes have to go through a whole assembly line before they get to me. But I could live with that. Until my notetaker started annoying me...

First she told me she didn't want to carry the looseleaf. I let that one go. After all, I have a whole backpack, I can carry the looseleaf. Then she told me she didn't want to carry the carbon paper because it got all over her clothes. I was slightly more annoyed at that one, but again, I let it go. Again, I have the space to carry it. Then on Friday:

Notes Girl: *groans* "Oh, I'm so tired!! Do I have to do the notes today?"
Me (slightly grumpy): "Yes. You do."
Notes Girl: *shoves looseleaf and carbon paper into Random Girl's face* "Here! Do you want to do the notes today?"
Random Girl: "Umm...okay."

Then Random Girl asked her how to do the carbon paper. Not me. She asked the girl who's only been doing my notes for a month and didn't get the hang of the carbon paper for like two weeks. Am I just being picky, but isn't that just so wrong??

And that whole exchange came right after I heard one of the custodians comment to another that "The wheelchairs are coming." when he saw my friends coming down the hall. Hello?? Wheelchairs don't ride down the hall by themselves! There are people in them!!

Yeah. So I asked Random Girl to do my notes from now on because there was no way I was asking the other girl again. She seemed to want to do it. Seemed being the operative word. We'll see how this all unfolds....

What defines disability? The Disability Experience

2008-10-21T19:54:00.000-04:00

This question came up on a thread on my very favorite disability site, Ouch, where some people were pondering the vague comment by some of the moderators that "80% of Ouch users are able-bodied". Here was my response:

Hmmmmmmm....very interesting. See, the thing with this is I think we have to go past the stereotypical, medical definition of disability and start thinking of disability as a MINORITY group, much like any other racial or cultural group out there. Most of us have agreed in past threads that disability does have a culture, and even those who don't quite agree with that statement know that disability is a whole different world than the so called "able-bodied" or "normal" world. This board is not made up of all "disabled people" per se, however, it is made up of people who, "disabled" or not, are a part of the disability community in some way, shape, or form, and understand the differences b/w "our" world and "theirs", as I like to think of it. We have our own humor, ideas, etc. as this site clearly illustrates. The people who post on this board "get it", as I always say. Disability is not a medical condition, or even a state of mind so much as an....experience. We experience disability. Some of us, like myself, live it, and have lived it all our lives. Some of us are just beginning to tiptoe into this wonderful experience now, and are still coming to terms with the drastic differences. Some of us experience it through others, as some people have already mentioned. But no matter what, disability is a roller-coaster experience that will never leave you, no matter how "able-bodied" you may become. We are disabled. All of us, on this board, we're all disabled. We all know disability. We all experience it. We cannot, I repeat, CANNOT start defining who is really "able-bodied" and who is "disabled" on this board, because we know where it'll lead. First it'll start with animosity towards the supposed "ABs" and then, who knows? I mean, are we going to start moving towards a society dominated completely by those who we consider "disabled", and anyone who isn't disabled enough is eliminated? I know it sounds like something out of a science-fiction novel (one that I would probably write!), but that's what we're heading towards with all this pigeon-holing of people. Like I said, anyone who knows the disability experience is "disabled" in my eyes.
What say you? Let me know YOUR opinions!

We're all just so darn special.

2008-10-18T19:43:00.000-04:00

Am I the only one who thinks that the term "special needs" is not only annoying, it's also somewhat patronizing?

Seriously. The more I watch the presidential debates (*cough* GO OBAMA!! *cough* oops, straying off topic...lmao) the more I want to vomit all over my TV screen every time I hear the term "special needs". And it didn't escape my notice that the other night, McCain actually had the audacity to use the term "very special needs"! Oh, so now we're very special?? I guess the normies weren't content enough to just label us plain old special!

I mean, I know special means unique and unique means different and we are different, technically, it's just...it seems so condescending. I know! Let's ask the dictionary!

Hmmmmm...I didn't realize there'd be so many definitions for one of my most hated words of all time! But one of the definitions for special seems to fit my point...

spe·cial–adjective: extraordinary; exceptional, as in amount or degree; especial

Someone please gag me. I mean, I know crips are fabulous and all, but I wouldn't call us extraordinary or exceptional. We're just ordinary old people with some extra challenges to face.

In other news on Spaz Girl's Political Rants, I started a post on Sarah Palin forever ago that I never finished. Maybe I should go do that now...

And here it comes...my rant on Sarah Palin.

2008-09-10T19:47:00.000-04:00

OK, I've been waiting for a chance to post this for a long time. Let me make this LOUD and clear: I HATE SARAH PALIN!! You would think I'd be all for her, right, with all this talk she's touting about the disabled having "a friend in the White House"? Hah, guess again. She's a liar and a phony and I despise the way she's exploiting that poor son of hers.

That's right. "That poor son of hers." Oh no, I don't feel bad for him because he has Down Syndrome. Sorry, I'm not going for that. You all know how I feel about pity-it makes me want to GAG!!! I feel bad for him because he's being shamlessly exploited by his own mother and he's too young to even know it.

Take a look at her website. Instead of anything substantial on her views, there's a rather large and fluffy page devoted to "comments and blessings" on her son, Trig. Also notice that in the picture to the right of the site page, she's holding her son. She was also holding her son when she made her acceptance speech. She's obviously going for the pity factor to get more votes. It makes me SICK the way she's exploiting that baby.

In her acceptance speech, Sarah Palin said "And children with special needs inspire a special love." Ugggggggh....we're all just so special! Ah, no, we're people. To me, the word "special" used in relation to disabled people, as well as the term "special needs" is condescending and idiotic. I want to ban it. Why should we be loved any different than a "normal" child? Aren't we just as important as a "normal" child, aren't we on equal terms with a "normal" child? Apparently Sarah Palin doesn't think so.

And did anyone else notice the other night when a question came up about autism and McCain said Sarah Palin would know better about autism than he would?! I mean, what was up with that?! He can't possibly have been lumping autism and Down Syndrome together, can he? God almighty, please tell me he did not do that! And as for Palin's supposed understanding of autism, have you heard she's being sued by the family of an autistic boy because she won't provide 24 hr care? Uh huh. Check it out. And you can also read the First Amended Complaint of the case here. That's understanding, all right.

All I can say is that if McCain/Palin win, us crips are in serious trouble.

I have a brain, thank you.

2008-09-10T19:38:00.000-04:00

The trials of being a short bus rider...

Short buses usually have an aide on the bus, more commonly known among us crips as a driver's assistant or D.A. These aides are supposed to help you with various things, but most of the time they're pretty much useless. Other than that, though, I've never really had a problem with them. Until now.

The D.A on my morning bus seems convinced that me and my fellow cripples are mentally retarded. She has continually tried to help me put on my seatbelt, and when I put it on *gasp* she gives me a thumbs up and says "Good girl." in the tone you'd normally use for a puppy. She has also told me to "move my pretty toe" when she's wheeling my friend into her spot. She's terrified that my other friend is going to crash her power wheelchair when she's a perfectly capable driver. Basically, she thinks we have no brains. It's half funny and half infuriating. And it's only the second week of school! God knows how I'm going to put up with her for the rest of the year...

Candidly Crippled is now Butterfly Dreams!

2008-09-01T18:27:00.000-04:00

Yes, I've changed the title of the blog. Yes, I have also changed the layout (isn't it BEAUTIFUL?? I found it online and absolutely fell in love with it). No, the link has not changed. And yes, like all things I do, I had a reason for the switch.

The butterfly has always been of particular importance to me, because it represents freedom. It is also the symbol of the summer camp for kids with physical disabilities that has given me unimaginable freedom over the past four years. The metaphor of the butterfly applies to my life in infinite ways. As I get older, and become more independent, I spread my wings a little more, and soon I will take off and fly away, on my own. I have undergone many metamorphoses in the past few years: not the least of them, my transformation from a "normal" kid that just couldn't keep up with her peers to a full out cripple. This particular change in point of view has been brought about by a number of factors-my gradual drifting away from my able-bodied classmates and my summers at camp among those who are cripples and proud come to mind. I have realized that being "normal" is overrated, and being a little freakish isn't so bad. Showing my true colors is better than not showing any colors at all.

And finally for the second part of my new title-dreams. Dreams are also very significant in my life-I've learned throughout my 16 years on this earth that there is no such thing as an impossible dream, that through hard work and perseverence you can make your dreams come true, even those that may seem crazy. I had a dream to help other people with disabilities: I made it happen. I had a dream to dance and move my body to music just like a "normal" girl. And although our style may not be as graceful or as poised as a typical ballerina, the girls of our class have more spirit and drive than anyone I've ever seen. I had a dream that one day I'd feel like I belonged somewhere-and I've found it. Dreams do come true.

So what do you think? Nicer than the old blog, huh? I'm starting school tomorrow (yikes! definitely not the place where I belong!) so I won't be able to blog for awhile, but just know that I'm still here and I still have plenty of ideas for this blog.

Not Just Another Camp

2008-08-01T18:43:00.000-04:00

For years I have been trying to explain to people, verbally and in writing, what exactly is it about camp that I love so much and crave so much during the year. While I was mulling over this question, an essay kind of poured out of me, which I would like to share with you. It's edited a little bit so as not to reveal any personal information, but I think it's the closest I'm going to get to expressing the magic of camp.

I know a place that is my own utopia. Here, all barriers, whether physical or mental in nature are broken down within a matter of days, something the world's leaders could only dream about. People of all cultures, races, beliefs, and abilities live, laugh and love in harmony, without fear of being judged. We stand (or sit) proud of who we are, unafraid and unashamed. Stereotypes are quickly proven wrong in this perfect place, and soon you forget that you ever saw those around you as anything less than friends, comrades, and most of all equals. Our differences are embraced, making up the rich mosaic of what our society should be, but isn't-yet. Four summers in this place have taught me infinitely many lessons-not all of them easy to learn. I have come to realize that we are not broken toys waiting to be fixed; rather, we are strong, independent human beings with hearts, minds, and spirits of our own. The freedom I have found here far exceeds anything that could be written law; it is incomprehensible and inexplicable. I feel like the phoenix-rising from the ashes to take flight once more. Leaders of the world today would be astonished at the microcosmic potential of a little camp for cripples nestled quietly in an unobtrusive town. If only those leaders would stop looking for answers in craftily worded doctrines and realize the peace and acceptance that has been going on nearly under their noses all this time. If only everyone could know the power of camp, I firmly believe that the world would be a better place.

Normalized

2008-07-22T19:02:00.000-04:00

First off, I'm so sorry to anyone who actually reads this blog that I haven't posted in awhile. I got very busy with school towards the end of the year and then right at the end of June I left for camp for three weeks, so I haven't had much time to post. But rest assured the blog ideas have been piling up in my head and I'm finally going to sit down and write them all down.

It's camp which I would like to discuss now. I go to a camp for physically challenged kids*. It is one of the most amazing places in the world, and this is my fourth year there. Every year there are new counselors, new campers, and new experiences. One of my favorite parts of camp is seeing the transformation in the counselors and teaching them about our crippled world. I could go on for hours about camp, but I'm going to split my musings into different posts.

One of my counselors this year was very adament about the word "crippled". She prefered to use the phrase "physically limited". I tried to explain to her, several times, why I use the word crippled as I do, as a term of pride. I knew why the word "crippled" bothered her so much: it has such negative connotations to it. What I couldn't figure out for the longest time was why "physically limited" bothered me almost as much as "crippled" bothered her. Finally I figured it out: to me, the phrase "physically limited" is yet another attempt to "normalize" us.

What exactly is "normalizing"? It's an attempt by a "normal" person to fit crippled people into the "normal" mold, to make us less disabled, because we're not supposed to be disabled. It's an effort to make us closer to what we're supposed to be. But as we all know, me and most of my crippled brethren do not like being ordinary. Most people try to "normalize" us without even realizing it, round off our square corners, because anything different scares them. And it's normalizing that has really begun to bother me in the last few months. Let me say it straight out, for anyone who might've missed it: I. DO NOT. WANT. TO. BE. NORMAL. I am very happy the way I am. I am a crip, and don't try and deny it, or sugarcoat it. I LIKE being a crip. I LIKE being different, and I LIKE not fitting into any sort of mold or stereotype. I'm a square peg trying to fit in a round hole, and it's not gonna work. I like standing out. And sometimes, standing out scares people, whether they know it or not. And sometimes standing out is harder than fitting in. But I'd rather risk it all to stand out, then to be boring and fit in all my life. I will not stand to be normalized. I will die before I let someone normalize me. Don't be ashamed of your crippled culture. Say it loud: I'm crippled and proud!

"To be fearless when I'm scared to move

I'm overdue

Daring to be different

To scream yes, yeah I'm awake

I will not break

Daring to, daring to be different"

-Daring to Be Different by Everlife

*if anyone would like more information on my camp, feel free to contact me privately

Oh, you don't need that...

2008-06-19T18:36:00.000-04:00

Sorry I haven't updated in awhile. Too much going on with school and everything, I was lucky if I found the time to check my email. But now school's over, and I have a very small window of time before I leave for camp. But onto the post.

Over the last week, I have had a number of people try and convince me that I don't need the modifications/equipment I have and/or are trying to secure. It all started when my OT commented on my neat handwriting. She knows I use an Alpha-Smart for notes, so when she saw my neat handwriting she said: "Oh, I don't even see why you need an Alpha-Smart!" Now, as any person who knows me would tell you, the reason I use an Alpha-Smart is not because my handwriting is messy, far from it. The reason I use an Alpha-Smart is because I hold a pen very awkwardly due to my CP and this results in hand pain if I even write as much as one sentence. Needless to say, I hastily tried to explain this to her before she could march up to the special ed department and demand that an Alpha-Smart be removed from my IEP. She didn't look convinced...what, am I lying now?

Then last night my dad was on the phone with the Scooter Store (yes, that is the name of the store), trying to get the scooter that I need. I can't walk long distances, and since I'm going to college in a few years, I need some sort of vehicle to save my stamina so I don't collapse upon arriving at class. There's a ton of red tape and stupid stuff to wade through before you actually get a scooter, especially if you're not filthy rich, so my dad was trying to coordinate things between the Scooter Store, my orthopedist, and the insurance company. And guess what? Apparently our insurance doesn't cover a scooter/powerchair unless you can prove that you need it for use INSIDE!! So since I walk inside, I must not need a scooter! The truth is out! Yes, that's right, I just want a scooter for a nice ride, like a car, but less expensive! Grr...

And then today put the icing on the cake. It's on my IEP that if I need it, I can dictate and someone will write my answers for me. I don't use a writer unless I'm truly desperate, so when the teacher in my room for the math regents today asked me if I wanted her to write for me, I politely declined. Later, when I was handing in the test, the teacher was flipping through my answer booklet, and she goes "Oh, you don't need a writer, your handwriting's perfect!" *explodes with annoyance* Uh, yeah, and do you know how much my hand hurt after that test? I just kind of smiled and was like "Oh, my hand gets tired really easily." because I didn't feel like going into the whole explanation. Hmm....maybe if my hand falls off, they'll finally believe me! I don't have to prove myself, people. I am not learning disabled or any of the other stereotypes you try and put me in. I am purely physically disabled. Is that so hard to comprehend?

Connect the Dots

2008-05-24T16:18:00.000-04:00

After years of trying to figure out what exactly is it about my disability that other people (especially my classmates) don't get, I think I've stumbled onto an epiphany. They don't connect the dots!

Let me explain further. Yesterday I was meeting with my group for my English project (which was hell in and of itself, I had to traipse around a very hilly park while we shot ten minutes of footage for a project I've started to hate). There was an incident in which we all went to the bathroom to wash war paint made of lipstick off our faces (don't ask), and the other, oh, five or six members of my group were about a mile ahead of me. After finally realizing that one of the group (namely, ME) was struggling to keep up, they slowed down a little bit. I said: "It's ok, I'm kind of used to being left in the dust." Which is true. It's something I barely notice anymore. They got all apologetic and were like "Oh, we're sorry, we didn't mean to." This is what irks me about people. They think it's something THEY did. It's not. I was just stating a fact.

Another example: Later in the group project get-together I was trying to get up from a sitting position. This is not exceedingly hard for me, although I do prefer it if there's some stable piece of furniture near that I can hang onto to get myself up. I can get myself up without holding onto anything fairly well though. But in this particular instance, it was on a hill, and I was having a little bit of trouble. I got about halfway up before I fell on my butt. My whole group was like "Are you OK?" I was like "Yeah, this happens to me all the time, you can ask my friends." Then came the very uncomfortable "Oh" from my group members. You know. The type when you explain something about your disability and they really have absolutely no idea what to say.

Now, I had my crutch with me this whole time, and since they're in my classes, they know that I'm disabled and use a crutch, that I type on an Alpha-Smart and that I leave five minutes early from class. The thing is, I don't think they connect the dots. They know I use a crutch, but they don't connect that with walking slow, or balance problems or any of that stuff. You know, I would expect people not to pick up on the upper body problems I have, because those aren't ask obvious, but I never thought that people don't pick up on the lower body stuff. At the very least, I thought they'd realize I walk slow. Guess not. Connect the dots, people, it's not that hard.

If You Want Something Done Right, Do It Yourself

2008-05-17T19:52:00.000-04:00

I have recently concluded that if you want something done right, you have to do it yourself.

I have come to this conclusion after nearly four years of struggling in the public high school system and having to rely on other people to do things for me. A recent example comes to mind: I hold a pen very awkwardly (which might be just the way my spastic fingers move) and experience a lot of pain in my hand when I write, especially when I write a lot. This may be related to the awkward pen grip or the CP. Or both. I suspect they're all interconnected. Anyway, this is why I use an Alpha-Smart (technically a Neo, made by Alpha-Smart) to type notes at school, and it has been my savior ever since I started using one around third grade. However, the Alpha-Smart's one pitfall is it can't write anything remotely mathy, such as complicated algebra problems, square roots, and all that other fun stuff that you learn in advanced high school math classes. Nor can it do subscripts or superscripts, which I have found to be a huge problem in chemistry this year. So I am supposed to have a note-taker for both classes. Fine. Except my note-taker in math has kind of messy handwriting and she often forgets to date her notes, which leads to me failing the notebook checks. And my note-taker in chem seems to have forgotten she's my note-taker at all. I keep trying to remind her, but it's difficult when I don't need all chem notes, just the parts that I can't type on my Alpha-Smart. I tried relying on memory for awhile and that didn't work out so well. So I've recently taking to handwriting all my chem notes, because it's just too difficult to handwrite the parts I can't type and type the rest and try to piece them all together later. This has led to tremendous pain in my hand, but hey, at least I have notes now! Of course, it doesn't seem to have improved my grades any, but that's a different story...

So. If I want something done right, I have to do it myself. Rather difficult when you have a physical disability. But, hey, I'm not complaining! It's just one of the many pitfalls of the special education system which really does nothing at all. Actually, I shouldn't say that, because I have friends who've had it worse off with the Special Ed Dept. than I have. But they do very little to correct the problems I actually have, which are few. But hey, that's the school system for you! (Note: I will probably be ranting on this frequently. Be prepared.)

A World Apart...

2008-05-09T16:22:00.000-04:00

First off let me apologize for not posting in awhile, I am a 10th grader whose teachers have decided to inundate with homework, not to mention my upcoming AP Global History Exam...yikes!

Speaking of school....a classmate noticed the scars on my ankles the other day and asked me if I had had surgery. I told her yes. Then she asked me if it had hurt. I told her that since I was 5 years old at the time, I really didn't remember much. Thankfully, she didn't ask me for details, as what they did to my legs is really too complicated to explain unless you have a good knowledge of the leg muscles/tendons and know what exactly can go screwy with said muscles/tendons when you have CP. So I started thinking about what would have happened if a fellow crip (ideally a fellow CPer) asked me the same question. Actually, scratch then. A fellow CPer most likely wouldn't need to ask me if I had surgery. They would probably know exactly the type of surgery I had, what the recovery was like, and then they would proudly show off their own scars (I've got nothing on some of my friends, my best friend had a dorzal rhizotomy, which means the doctors basically cut through some of the nerves in her back to make her less spastic. She's got a huge scar running down her back). Then I started thinking about all the differences between the able-bodied world, which I go to school in and am basically thrust into every single school day, and the disabled world, where I do most of my activities like camp, dance, etc. So I've decided to make up a list and post it here for your viewing pleasure. Enjoy!

DIFFERENCES BETWEEN THE DISABLED AND ABLEBODIED WORLD

1) When you say you're getting a vehicle, it is understood in the able-bodied world that you are getting a car. In the disabled world, it is assumed you are getting a new wheelchair or mobility scooter.

2) In the disabled world, arts and crafts is a synonym for danger (at least among us motor skill challenged crips).

3) Every new surgery earns you a metaphorical badge of honor in the disabled world. In the able-bodied world, all it gains you is flowers and a whole lot of fake sympathy.

4) The word spastic is actually used to describe someone with spastic muscles, rather than someone clumsy or stupid.

5) Songs like Five's "Keep On Moving" send you and your friends into gales of hysterical laughter. Your able-bodied friends fail to see the humor.

6) In the disabled world, a simple trip to the bathroom can be described as a "twisted hokey pokey".

7) Crips can say "That's just the way I roll" and actually mean it literally.

I'll think of more later...any suggestions?

BADD Highlights

2008-05-03T14:27:00.000-04:00

Well, since a lot of other people seem to be posting about their favorite posts from Blogging Against Disablism Day, I thought I'd do the same. I'll have the title of the post first, then the blog it came from, and then my analysis/description of it and why it's one of my favs. And so, without further ado, I present you to my top picks for Blogging Against Disablism Day 2008!

Inclusion and the Myth of the Magical Mainstream, from Parenting Special Needs Children-this one I thought was absolutely brilliant. Hit the nail on the head as to what I've been trying to tell people all these years. INCLUSION IS NOT ALL IT'S CRACKED UP TO BE, PEOPLE!! I won't go into a full fledged rant about it right now, but check out the post and also an essay I wrote about the subject at Audacity Magazine.

The Gorilla In Your House from This Is My Blog (batsgirl)-All I can say is it's perfect. I read about the Gorilla Theory on Ouch before batsgirl posted it on her blog, so I knew all about it already. I loved it then, and I love it even more now. It's the best metaphor for disability that I've read since the Spoon Theory. In fact, I might start using the Gorilla Theory in my posts soon. As in, my gorilla draped itself across my knees today. Confused? Go read the post!

Don't Enable An Ableist from Wheelie Catholic-Brought up a really good point about how when we hem and haw and make excuses for an disablist (or ableist) person, we're just as bad as they are. I must admit to being an enablist a few times, but no more!

On Being Disabled and Feline from Betty's Catster Diary-this is the blog of Lisy Babe's cat. Absolutely hysterical, and does point out some issues that disabled animals (or more specifically, cats) might have. Being a cat lover myself, I just had to point it out.

This Is A Person from DotComMom-It amazes me how casually people remark on this subject, as DotComMom mentions in her post. Apparently, terminating (*cough* *cough* killing) a baby with disabilities has become so routine it's almost boring. Ho hum. We're not a broken toy that you just throw out. We're people, same as every person on this planet. How would you like it if someone had killed you before you were even born, just because you had a certain color hair or eyes? It's bordering on genocide, if it isn't already. I wonder how many babies are killed before they ever get the chance to live, just because they're disabled?

That's all for now, back to the homework. I'll post more later if I find some more good ones.

Blogging Against Disablism-a day late!

2008-05-02T16:05:00.000-04:00

Well, Blogging Against Disablism Day was yesterday, and I'm very excited because this year I actually have a blog to post on! However, yesterday I was unable to post due to massive amounts of homework. So I'm posting today.

OK, first off, if you have no idea what Blogging Against Disablism Day is all about, click on this link to go to the mastermind behind all this, Diary of A Goldfish. I think she's a genius for coming up and organizing this whole thing. *bows down to Diary of A Goldfish*

OK, now for the actual post. I feel like I talk about disablism in some form in all of my posts, so I think I'm just going to analyze what disablism means to me, for something a little different.

Disablism is discrimination against disabled people. It's also called ableism and a bunch of different names. There are countless obvious examples of disablism that I could point out to you right now, for instance, lack of access at a store or other public place. But I also feel there are infinitely many subtle examples of disablism. Disablism, to me, is anything-and I do mean everything-that makes a disabled person feel inferior to able-bodied people. This includes disablist language like "retard", patronizing smiles or comments, or an accessible entrance to a public place that is in the back or some other out-of-the-way place. It's the stares we get when we're out on the street. It's feeling like you're invisible, or that you have to fight to make yourself and your needs known. I could spend a whole post talking about examples of disablism I've encountered in my school, but for now I'll just point out a few.

The front entrance to my school is a set of steps. If you are a wheelchair user or someone who has mobility problems and cannot go up or down the stairs, you HAVE to go around to the back, where there is a big sign that says "ACCESSIBLE ENTRANCE". (The sign is a relatively new addition. I couldn't decide whether I liked it or not.) That is the only accessible entrance into my school. I feel this is a subtle form of disablism because it makes disabled people feel like second class citizens. Why couldn't they take out part of the steps and put in a ramp in the front? That way, we'd all feel equal. We didn't stand for separate entrances for blacks, did we? So why are we standing for separate entrances for disabled people? And many times I have gone to an evening event with a friend at my school only to find that the accessible entrance is LOCKED. I can do steps fine, but my friend-who is a wheelchair user-cannot. So if I get there before her, I have to beg and cajole and plead with the custodians to open the accessible entrance so she can actually GET INSIDE her own school! And if she gets there before me (which, thank God, has never happened), she's screwed until I get there! And that's not good if it's pouring out like it was the last time. It's ridiculous!

Other examples of disablism in my school: If you need to use the elevator, you need to get a key from the nurse, who makes you pay ten bucks for the key. I find this a little strange: surely able-bodied students don't have to pay to go up the stairs? (And I don't have to tell you how much money I've spent on replacement keys after I've lost mine. I think this is about my fifth key in nearly four years. Let's hope I don't lose this one.) And I won't go into the special education system, because once I get going on that, there's absolutely no stopping me.

I also hate it when people use disablist language. A particular pet peeve of mine is when people use the word "retarded", as in "You're such a retard!" or "That's so retarded!" I started a campaign years ago about not using that word, and I have quite a few participants. The one time I dared to criticize a couple of girls at my lunch table (this was back when I actually had a lunch period) for using that word, they all looked at me like I was some sort of cockroach. I'm used to that look by now. I get it a lot at school.

Oh yeah, and another thing. I HATE IT WHEN PEOPLE TRY AND HELP ME! I don't know if that particularly qualifies as disablism, but it's certainly annoying. I am a VERY independent person, and if I need help, I will ASK for it! When people try and help me, it just makes it longer and harder, because I have a specific way I do things in order to make it the most efficient process possible. If people screw up my routine, it takes ten times as long. I feel awkward telling them not to help, because I know it's nice of them to offer, but I can do it myself, people. And if people try and help me up when I fall, forget about it! I'll be going right back down on the floor then. And don't you even think about asking me stupid questions about my crutch. I can stick it right up your butt if you're not careful.

OK, I'll stop rambling now and get on with the homework. I'll let you know if I ever emerge from the piles of work. I'm going to post either later or over the weekend with an analysis of my favorite BADD posts, because I see a lot of other people are doing it. Happy Blogging Against Disablism Day! (even though it's not BADD anymore)

Little People, Big Problems

2008-04-24T19:18:00.000-04:00

Well, I was up forever last night because my legs were killing me, probably because I dared to wear shoes other than my sneakers and actually go out and have a life yesterday! But it was all good, because while I was trying to take my mind off the pain, I happened to turn the TV on right in the middle of a marathon of one of my absolute favorite shows, Little People, Big World.

For those of you who don't know the show, it follows the lives of the Roloff family, who live on a farm in Oregon. Matt Roloff, and his wife Amy, are little people-meaning that they have dwarfism. They have four kids. Jeremy, Molly, and Jacob are all average height, while Zach, Jeremy's twin, is a little person. The show does not focus primarily on the challenges that little people face, but it is a theme in a lot of the episodes.

Anyway, one of last night's episodes focused on Matt, Amy, and two of their friends-who ar also little people-testing the kit made by Matt's company Direct Access Solutions. This kit is a Little People Accessibility Kit. It is meant to be used in hotels and includes pretty much everything a little person might need in a hotel room, including a specially designed step stool and a reacher to get things such as the remote that might be in a place too high for a little person. I thought this kit was an ingenious idea, and I'm wondering why I haven't seen a kit like this in any of the hotels I've stayed in. Maybe you have to ask for it? Then that opened up a whole flow of musings for me about whether it should just BE there, instead of you having to ask for it. I feel like the right thing is to just have it for any little people who may stay in that hotel room, instead of having to ask for it. Because I feel like asking for it is like acting like having a little person staying in that hotel is a special case, something that's out of the ordinary. Which kind of gives the impression that little people (and this goes for all disabled people, not just little people) don't travel and do stuff like "normal" people do. Which is stereotypical. Which is one of the things that annoys me.

And then later in the episode, Matt came out to find a parking ticket stuck to the windshield of his car. Unfortunately it was in the spot where most "normal" people would be able to reach it and pull it out, but for Matt it was impossible. He tried every which way of getting it, it was getting kind of comical, actually. But it really made me think about the little-no pun intended-things that little people may have difficulty with.

Here's another example: In another episode, Matt was explaining how it's difficult for him to get up stairs because he is a diastrophic (have no idea if I spelled that right) dwarf. Diastrophic dwarfs typically have more problems with their joints and bones than other types of dwarves, which is why Matt usually walks with underarm crutches or uses a scooter. Zach and Amy are acondroplasic (I really don't know if I spelled that right) dwarves, which means they will not have as many issues with their joints and bones and will have an easier time walking, climbing stairs, etc. It really opened my eyes and made me realize that, just as I'm forever telling people that CP does not just affect my legs, dwarfism does not just affect your stature.

Anyway, I've been procrastinating long enough. Time to get back to homework. Adios!

Sweet Nothing In My Ear

2008-04-21T14:20:00.000-04:00

This might be a long one, bear with me....

Last night I watched the very interesting Hallmark movie called "Sweet Nothing in My Ear". The movie is about a couple who have a deaf child, and they are considering getting cochlear implants for him. For those of you who don't know, coclear implants are small electronic devices that can help a deaf or hearing impaired person hear better. For more information about cochlear implants, go to http://www.nidcd.nih.gov/health/hearing/coch.asp. The wife in the movie, played by famous deaf actress Marlee Matlin, is deaf herself, and is adamently against the implants. She feels that that would send a message to her son that something is wrong with deafness, that it is a disability that needs to be fixed or cured. The husband is hearing, and feels that his son should have cochlear implants in order to fit in better in the "normal" world. I found this movie absolutely fascinating and it raised some interesting issues, particularly, for me as a disabled person.

I always say that CP is engrained in me too much for me to want to be cured. It influences every aspect of my life: my friends, my personality, my views on certain issues. But I have considered the question of: what is crossing the line? What is going too far towards a "cure"? Cochlear implants do not "cure" deafness, however, they do make it so a deaf person can hear some things. Is that going too far towards a "cure"? Is that sending the message out that deafness does need to be "cured"? The mother in the movie seems to think so. However, I can also understand it from the father's point of view. He wants his son to hear music, to be able to talk with his voice as well as with his hands. He doesn't think his son is broken or wrong in any way. He just wants his son to have an easier life. But, as we all know, life is not supposed to be easy, and sometimes the right decision is not the easy one. Having a disability is not easy. Having CP is not easy, and it's made harder by other people's attitudes and stereotypes about us. However, having a not-so-easy life has made me stronger in many ways. I can't imagine life without CP.

I thought at one point in the movie, the mother made a good point. The parents were talking with a doctor who specializes in cochlear implants and hearing problems. The mother said "He won't fit into the hearing world because he won't be able to hear the things other kids do, and he won't fit into the deaf world because he won't be totally deaf." Then the doctor said "I think you'll find he gets the best of both worlds." That's not true. Sometimes being in between two worlds is harder than fitting into one or the other. As a person with mild CP, I often feel like I don't quite fit into the disabled world or the able-bodied world.

Gotta go, I'll post more later!

Wheelchair bound?!

2008-04-20T18:57:00.000-04:00

Just wanted to blog quickly about the usage of the phrase "wheelchair bound". I was bored and so what do I do when I'm bored? I look at news articles on disability! Many of the articles I looked out used the phrase "wheelchair bound" which is a phrase I absolutely, positively cannot stand. I've heard other disabled people say it conjures up an image of a disabled person chained to their wheelchair, and it does the same for me. But what annoys me the most is that it gives the impression that it is the wheelchair that limits us. It's the same with the phrase "confined to a wheelchair". A wheelchair does not limit a disabled person; in fact, it frees us. A person who uses a wheelchair to get around is going to be much more independent that way than if they walked with assistive devices, or didn't walk at all. Even for people like myself, who have mild disabilities, a wheelchair can be an asset. I am getting a mobility scooter soon for college and other places where I might have to walk a lot, and I can't wait! (Isn't it so disability nerdy of me to be excited about a new mobility device? I get the same way when I order a new pair of crutches.) The scooter is going to allow me to go places I could have never gone before, because I couldn't walk that much or that far. I have several friends who have gone from using manual wheelchairs to power wheelchairs, and have found them so freeing. A wheelchair can be a step towards the independence that all of us, but especially disabled people, crave.

"I wasn't born with a chair glued to my butt!"
-my best friend who uses a power wheelchair. This is her response to the timeless question "Were you born like that?"

A note of explanation and welcome...

2008-04-19T21:01:00.000-04:00

First of all, I'd like to welcome you all to my new blog. This is an idea that has been rolling around in my head for awhile-creating a blog, I mean. I have a lot of ideas in my head that usually never get written down, so I'm creating this blog for that purpose. I'll mostly blog about disability issues and general rants, but who knows? I might blog about other stuff, too! *grins* I'll keep you on your toes...so to speak, seeing as I can't go on my toes.

OK, before I start rambling (which I think I've already done), I want to offer a note of explanation as to why I named my blog "Candidly Crippled". I know some people will balk at the word "crippled" and I wanted to clear those issues before they arise. I am crippled. I use the word as a term of disability pride. That's right, pride. I am disabled. I am very involved in the disability community and culture. I am not ashamed of who I am, in fact, I am proud. I wouldn't trade my CP for anything. It has made me who I am as a person and shaped my thoughts, my ideas, and my general outlook on life. I am candid. I'm not going to sugarcoat anything in this blog. I don't deny that the life of a disabled person is difficult sometimes, but it is made more difficult by others assumptions and stereotypes about us. So, for any able-bodied person that is reading this, I'm going to try and show you how we feel. We don't need your pity. We don't need your patronization. All we need is for you to see us as you would any other person. Thank you.