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!!