Tuesday, April 20, 2010
Monday, April 5, 2010
Balance, Or Lack Thereof
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.
Wednesday, March 3, 2010
Spread the Word to End the Word
So after all the positive responses to my post for March's Disability Blog Carnival, I've made a promise to myself to blog more, and today is the perfect opportunity. Today is End the R-word Day. The R-word campaign, run by the Special Olympics, is a national effort to "change the conversation" and eliminate the word "retard" from our language.
My problem with the r-word is not so much when it's used medically as a diagnosis, because, unfortunately, in this day and age, a diagnostic label is needed for any disabled person to get services of any kind (more on that in another post). My problem is when it is used as a synonym for "stupid". We all hear it - I hear it in school especially. "You're acting retarded." "That assignment was so retarded." "You look like a f***ing retard." Tons of people, from celebrities to TV personalities to ordinary people, use the r-word derogatorily. The r-word has been integrated into our culture so much that no one bats an eyelash about it.
The sad part, people have no idea of the r-word's connotations towards people with cognitive/intellectual disabilities. Not only is the r-word used as a substitute for "stupid", which people with cognitive/intellectual disabilities are NOT (some of them are more intelligent than me in some ways!), it also implies that being "retarded" is a bad thing. It is words like this that reinforce fear and sterotypes, because it is sending the message that being disabled (in any way) is this horrible thing that no one would ever, ever want to experience. No one ever wants to be "retarded". I won't deny that being disabled is difficult sometimes, but it's not BAD.
Anyway, I'll end with a quote from my mom, who not only is a parent of a disabled child, but also is a special ed teacher aide: "Some of my best friends are R!"
And for a slightly different perspective on the R-word, here's "About Being Considered "Retarded"" by the wonderful Amanda Baggs.
Sunday, February 28, 2010
I am not "just like you".
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.
Friday, May 1, 2009
Special People, Normal World
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".
Monday, March 2, 2009
The R-Word Campaign: Spread the Word to End the Word
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!


