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!!

Wednesday, December 15, 2010

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

Hey all, I am THRILLED to be hosting the January edition of the Disability Blog Carnival!!!!!!!!!! What is the DBC, you ask??? Oh, my dear, you have been deprived! The DBC is, quite frankly, a collection of posts on disability and a specific theme. The theme, and the host, changes from month to month, and I am humbled and honored to be hosting the first disability blog carnival of the new year. The theme I have chosen is LET YOUR FREAK FLAG FLY, taken from the title of a song in one of the Shrek movies, and one of my favorite songs of all time. Write about a time when you openly and proudly identified as a person with a disabilty, or, if you're a non-disabled ally, write about a time when you were proud to stand by us. Or....you could make it into a musing on the word "freak" itself, and related words. Do they help us? Hurt us? Is it wrong to call ourselves freaks, spazzes, and gimps? Or is it empowering? Or......something else!! I'm flexible - as long as you can justify it fitting the theme, I'm good. I'm aiming to get the blog carnival up on Martin Luther King day, to honor a great activist. That is January 17th, so try and get the posts to me by then. But I know as well as anybody how writer's block and other obligations can delay a post, so if you can't get the post to me by then, no biggie, I'll just add it to the lineup later. And if the muse is on your side this month, and you want to do more than one post, by all means, go for it! Post the link to your submissions as a comment to this post, or if there's some sort of problem with that, you can email me at caraliebowitz@gmail.com. Happy blogging!!!!!

"We spend our whole lives wishing,
we weren't so freaking strange.
They made us feel that way,
but it's they who need to change.

The way they think, that is.

It's time to stop the hiding.
It's time to stand up tall.
Sing hey world, I'm different,
and here I am splinters and all!

Let your freak flag wave
Let your freak flag fly
Never take it down, never take it down
Raise it way up high!
Let your freak flag fly!
Let it fly, fly, fly!"

Monday, December 13, 2010

Long Nights and A Beautiful Sunrise

Once upon a time.....

Once upon a time, I was scared and lonely. A lot of changes were happening in my life. I was eight years old and just coming to terms with my own disability. I realized that I was always going to be this way. I didn't have any friends who really self-identified as a person with a disability and I felt very isolated. No one could understand what I was going through, especially not my able-bodied friends at school. I broke down and cried a lot, with what I now know was a lot of anxiety. I had no disabled role models, no one to look up to, no one to tell me that things were going to be okay, and that I didn't have to feel ashamed to be this way.

My mother realized that I needed a friend like me. So, with her guidance, I traipsed into the still-fairly-mystical world of the Internet and began posting on a messageboard for kids with CP. I stipulated that I was looking for someone with mild CP, because those issues were unique to me and really what I was struggling with at the time - looking so "normal" yet still being different. A few people posted back, but no one I really connected with. And then Fate dropped an amazing gift practically in my lap. A boy with mild CP named Nate replied to my post - he was looking for someone like him, too. We struck up a lengthy correspondence first on the messageboard; then we moved to email. Eventually, I found out that he lived in my state, barely an hour away from me. We had to meet.

The first time I met Nate, I remember us both being really shy. He brought along the science project he had done on CP, where he had various able-bodied people try and accomplish various tasks while "CP-ized" in some way: i.e: fine motor tasks with gloves on, saying the Pledge of Allegiance with their tongues behind their teeth to simulate speech impairment, etc. I thought it was really cool. For the first time, I had someone who knew what it was like to "walk funny" and have difficulty with the simplest tasks. It was that day that my sun began to rise, and my metaphorical "long night" began to end.

Over the years, Nate and I grew closer and closer. He became one of my best friends, and our families became friends as well. We had many adventures together, me, Nate, my sister, and his sister. Nate and I wrote a small "book" about what it's like having CP. We roasted marshmallows together in his backyard and taught each other our favorite computer game tricks. One summer, our two families shared a rustic cabin vacation. When I made my first website, Abilities4u, Nate made t-shirts for the site and helped out in any way he could. Up until I met a few others at age 12, Nate was my only CP friend, and that made him special.

When I was 15, I convinced Nate to come to camp with me, and it changed his life in the same way it changed mine. Although we both branched out and met others with CP along the way, we never stopped being each other's best friends. And when I was 17, a close friendship suddenly blossomed into something more. Nate and I have been dating for about a year and a half and I couldn't be happier. He is the love of my life, and I will never forget that he was there for me during one of the darkest periods of my life.

Along the way, a lot of opportunities came for me through the Internet and social networking. My first website expanded and grew into something more, eventually acquiring a domain name, and helping many disabled kids and their parents, who weren't sure what to do during their dark nights. I gave them advice from personal experience, because I knew all too well what it was like to know nothing. I moved from CPKids onto other boards, like the Ouch! messageboards. I networked with other like-minded crips through Facebook. Almost a year ago, I created my second website, Mosaic Webzine. To this day, the Internet and social networking is how I keep my finger on the pulse of the crip community.

The theme for the December Disability Blog Carnival is "long nights and what we need to get through them". Initially, I had no idea what to write. I thought about writing how my anxiety has caused me many long nights in the past few months, but I couldn't find the words. I posted my dilemma on Facebook and within minutes, Stacey Milburn, better known as cripchick in the disability blogging world, suggested an idea. So this post wouldn't have happened without social networking. I feel so blessed to be a part of a community that has the ability to stay in touch, no matter where we are. I've come a long way from the scared little girl of eight, but my life is so much fuller. None of this would've happened without Nate and CPKids, and I am reminded of that every day. Now I not only have a wonderful boyfriend with CP, but countless others around the world who have come into my life. My sun has truly risen now, and I have come out of those long nights. I hope it never sets.

Me and Nate at our senior prom last June!

Friday, December 3, 2010

International Day of Persons With Disabilities

Today is International Day of Persons With Disabilities. On this day, I encourage you all to be out and proud disabled persons, or if you are non-disabled, allies and friends of disabled persons. I know that on this day I am extremely proud to be disabled, however many hardships that may bring me, it also brings me a unique, beautiful perspective on the world and infinite opportunities I wouldn't have had otherwise.

Today we celebrate OUR history, OUR culture, and OUR accomplishments that are so often belittled and forgotten by the rest of society. Instead of remembering Rosa Parks in the front of the bus, we remember the first ADAPT action, where a bunch of feisty crips blocked the road with their chairs, demanding buses with lifts. We remember Ed Roberts, who fought for the right to go to college and have personal attendant services - and won. We mourn the loss of Laura Hershey, who contributed some of the most striking and beautiful poetry as well as a rip-roaring activist spirit to our movement.

Today we soak in OUR art and OUR talent. We dance, we sing, we create. We acknowledge that people with disabilities have contributed more than some may think to the arts and society as a whole. We are Shameless.

Today we recognize how very far we have come - and realize that we still have a long way to go. We applaud the strides that laws like the Rehabilitation Act, the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act have made for us. But we are sobered by the fact that our civil rights - which should be set in stone - unfortunately are not, and even now our rights are threatened every day by inaccessible public places, crappy transportation, and separate and unequal treatment. On this day and every day, we continue to fight for those rights, and we will fight until we have the rights we deserve - both in principle AND in practice.

On this day, we celebrate all across the world. On this day, we are not pitied, ashamed, stereotyped or patronized. We are proud.