Friday, December 23, 2011

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

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 petition demanding the end of abuse of disabled students in schools, created in response to the duffel bag incident.

Tuesday, December 20, 2011

Visible vs. Invisible

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.

Saturday, October 29, 2011

Sweet Is the Melody

"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

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!

Tuesday, October 4, 2011

Little Things That Piss Me Off

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.

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  You can even send them to me through Tumblr if you like, I don't care.  Happy blogging, everyone!

Monday, August 22, 2011


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

Wednesday, August 10, 2011

CP in a Jar

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

Sunday, July 10, 2011

Cerebral Palsy Is.....

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! :)

Sunday, July 3, 2011

Woah, wait, another blog?!

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 :)

Thursday, June 23, 2011

Monday, June 20, 2011

Redefining Inclusion

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.

" 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.

Monday, May 30, 2011

(Blog) Carnival Ride

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  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 

Friday, May 20, 2011

Self-Care is a B*tch

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!

Wednesday, May 11, 2011

New bloggy things!

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 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!

Tuesday, April 19, 2011

My Little Ableist Friend

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.

Monday, April 18, 2011

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

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!

Blogging Against Disablism Day, May 1st 2011

Friday, March 25, 2011

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

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.

Sunday, March 6, 2011

Cerebral Palsy Awareness Day: March 25

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!

Sunday, February 13, 2011

Able Privilege Checklist

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!

Tuesday, February 8, 2011

On Bullying and Disability

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

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! :)

Sunday, January 30, 2011

Looking Back On The Road Behind Me

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?

Monday, January 17, 2011

Nitty Gritty Dirty Little Freaks!

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

Saturday, January 8, 2011

On Being A Cripple

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.)

Monday, January 3, 2011

Disability Blog Carnival: second call for submissions

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!!