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.
Monday, November 3, 2008
Tuesday, October 28, 2008
A post of NOTE...
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....
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....
Tuesday, October 21, 2008
What defines disability? The Disability Experience
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!
Saturday, October 18, 2008
We're all just so darn special.
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...
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...
Wednesday, September 10, 2008
And here it comes...my rant on Sarah Palin.
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.
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.
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...
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...
Monday, September 1, 2008
Candidly Crippled is now Butterfly Dreams!
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.
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.
Friday, August 1, 2008
Not Just Another Camp
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.
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.
Tuesday, July 22, 2008
Normalized
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!
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
Thursday, June 19, 2008
Oh, you don't need that...
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?
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?
Saturday, May 24, 2008
Connect the Dots
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.
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.
Saturday, May 17, 2008
If You Want Something Done Right, Do It Yourself
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.)
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.)
Friday, May 9, 2008
A World Apart...
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".
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?
Saturday, May 3, 2008
BADD Highlights
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.
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.
Friday, May 2, 2008
Blogging Against Disablism-a day late!
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.
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)
Thursday, April 24, 2008
Little People, Big Problems
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amy
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Direct Access Solutions
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jacob
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jeremy
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little people
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little people big world
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matt
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molly
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roloffs
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zach
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1 comment
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!
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!
Monday, April 21, 2008
Sweet Nothing In My Ear
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!
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!
Sunday, April 20, 2008
Wheelchair bound?!
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?"
Saturday, April 19, 2008
A note of explanation and welcome...
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.
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.
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