TWO roads diverged in a yellow wood, And sorry I could not travel both...Two roads diverged in a wood, and I— I took the one less traveled by, And that has made all the difference. - Robert Frost

Monday, January 17, 2011

Letting my Freak Flag fly...

So, I've told you about my passion for disability advocacy and how I want to make a career out of it, however, I have not disclosed my reasons for this. I was born 3 months premature at whopping 1lb 2 onces, resulting in a 4 month stay in the NIC-U and ultimately, a mild case of Spastic Cerebral Palsy.  After a lifetime of therapy, and 2 major surgeries I walk with a "wiggle" of sorts, and I use a cane when I'm outdoors to help with balance (it doesn't help half the time.. I fall like it's my job). Today, at the age of 21, I view my disability as one of my best attributes, as it allows me to view situations and people with an open mind and appreciate my strengths in a profound way. For most of my life, however, this was not at all the case.

I'm 7 and I'm sitting Indian-style in the middle of the black-top yard of PS 107 during recess, playing with some pogs, surrounded by various toys and other items. Confused, my para comes over and asks me where my crutches are. A few feet away a few of my classmates are trying to walk with the crutches, and then taking turns using them as swords and wands. Smiling up at her with my new toys I said "I lent them out for now...for all of this stuff!"

When you're young, difference is not something that is feared, ignored, or ridiculed. Being different is cool, new, and exciting. Many of the children knew I had cerebral palsy right away- because I wasted no time in telling them. As soon as my feet hit the sandbox, everyone in it knew my life story. I laid it all out there with the castles and the shovels. I'd rather the other kids know right off the bat and accept it, then to sit back wondering and treating me differently. My mother always told me that I could do everything anyone else could do- I just had to find a different way to do things sometimes. When we went to places that had huge ball pits with tubes and slides, instead of telling me to stay back and let the other kids do it, she would take away my walker, my crutches, whatever I had and push me right in, and say "See ya! Have fun!" Now, I know to you, that may seem ill-advised, maybe even cruel, but you know what? I had fun and I made it out...eventually. Sure, it took me 2 hours, but.. I did it. I could do anything.

In 5th grade I became the first girl with a disability at my school to make the cheerleading team, and in 6th grade I was voted Vice-president of the whole student-body. I went into 7th grade at IS 25 with a heart full of confidence. I was so ready to make friends, hit puberty, marry Dexter Holland (the lead singer of The Offspring), have 2 children, and live happily ever after. But I soon realized that my future would never be quite that easy.

When I got to junior high, I had ceased any use of equipment to help me get around, but you cannot hide a disability that is physical. The other kids knew I was different, and unlike my old school, where it was half main-stream and half disabled students, many of them were not used to see someone like me. I started getting teased a lot, mostly because I was an easy target, having never been bullied before. When I sprained my ankle in the middle of the year, my orthopedic surgeon suggested I go back to wearing braces on my legs, and as much as I hated the idea, I knew she was right. The first day I had to wear them to school, I asked my science teacher if I could talk to the class (who I had every class with) briefly after the late-bell rang. That's when I explained what my braces were, what they did, and why I had to wear them. If they had any questions, they could come to me. For awhile, everything went well. People stared, but I was used to that. After a few weeks, the inevitable teasing started up, and while many of the people I had become friendly with felt for me, they didn't know how to make it stop.

When I got to high school, I was done with having CP. I still had it, of course, but I refused to acknowledge it. I went from having acne and a perm to long blond hair and clear(er) skin, struggled to lose weight, and went from a C/B average to straight A's. I threw myself into everything but my disability- the one thing I could never change. When I applied to college in Rhode Island, many people tried to tell me that I wouldn't be able to handle such a large campus in a state that has such harsh winters, but I wouldn't listen. If the other students who went there could handle it, I would to. So, I went. And it was during my first year there where my life changed.

The stares of the people around me cut through me like knives every day. In high school, people were used to the way I walked, some of them knew me from jr high, they had seen people "like me". I think I really confused people on campus because while I appear to be completely "normal" I still wiggle when I walk. A lot of the people I came into contact with would ask me if I hurt my leg, or when my leg would be healed, thinking I had sprained it or something. Then, I would explain. After awhile I started to LOVE URI, and all of my friends and the people we would meet. It was so great, I felt so accepted in every way. Even still, being away from home, I became self-aware, more aware than I had ever been before- about how I was different. I would walk to class and count how many people would stare at my feet, I would look at myself walking in the reflection of windows and class doors. I hated it. It made me sad. I hid my feelings well, but no matter how much I blended in, I would always stand out. When winter came, I fell a lot, and because of that I reluctantly started using a cane. When the snow and ice cleared up, I realized that I could no longer go out without the cane- I had developed a psychological dependency on my cane, a dependency I have still not been able to break. This was a blow to my self-esteem. Now I not only walked differently but I had a cane- a symbol of impairment- a stigma, a big neon sign that read "DISABLED GIRL".

At the beginning of my sophomore year, I had a phone conversation with a friend of mine who is also disabled and became fustrated by this person's sadness and insecurity, seeing myself in that all too familiar pain. I realized then that I had to remember that confident child I once was- the person I had been all along. A few weeks later, I founded and became president of "Students for a More Accessible Campus" the first student organization at URI to include both disabled and non-disabled students in an effort to make the campus a more accessible and safer place by spreading awareness of disability among the campus community. After that, I started exploring career paths involving disability, and I started working in the URI disability services office, where I have worked for the past 3 years. In these past few years, I have become a strong voice for disability rights and I know that being disabled is not easy, and because of that I want to be able to advocate for the people who cannot, or are not ready to, advocate for themselves.

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.

For me, disability has never meant "inability", disability is ME, doing things differently.

Peace out!

Krista :-)

1 comment: