Tag Archives: Muscular Dystrophy

The Perks Of Being A Wheelchair­ User (Re-post)

I have posted this piece on a few different sites but it is one of my favorite things I have written.


 

Since the age of ten I have used a power wheelchair, a mobility device seen by much of the walking world as rolling pity. A piece of equipment, often stigmatized by society, has allowed me to live my life how I choose. One of the most important lessons I have ever learned,is that my wheels are a positive part of my life, that they represent ability. Living with Duchenne Muscular Dystrophy, a progressive muscle wasting disorder, has shown me the freedom and importance of assistive technology.
Coming to this understanding however, was not always easy. Early on, I fought the idea of needing a chair, in fact, I insisted on walking a year longer than could even be explained medically. Transitioning into a wheelchair seemed like giving up to me at first; in my mind it felt like losing a piece of myself. Looking back I realize that I was ignorant, prejudice even. I had to reject my own internalized ableism and respect my body’s needs.

The Perks of Being a Wheelchair-User

As a culture we tend to still look at wheelchair users as inherently broken, deserving of our utmost sympathy. This deep-­seated notion that all mobility impaired individual’s lives are tragic, made me resent my own existence. Those who regarded my circumstance with abject sadness generally meant well but created a distinct feeling of otherness for me—I wasn’t just a child, I was a tragedy. Feeling sorry for those who are disabled has a very real, negative impact on our self worth. There is a difference between respect and pity when dealing with people who are simply different physically.

One of the biggest factors that helped me get through the early portion of my diagnosis however, was the acceptance of my peers. I remember when I first started using a manual wheelchair for longer distances at school, all of my classmates were so receptive and eager to help. After making them take a road course with plastic cones and passing out laminated “driver’s license”, I eventually allowed a few of my closest friends to push me around the halls. My friends saw me as the same person, no matter what I was going through or how I got around. Often times, children are the most understanding people there are.
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I truly started to feel more comfortable when I received my first power wheelchair. As I began to learn the controls of my brand­-new, shining blue Jazzy 1120, some of my insecurities began to fade. My world seemed so much brighter when I realized I could now get around fast, very fast. Being able to independently drive myself at breakneck speeds with the wind in my face, made the end of my walking days feel more like a relief. When walking became impossible, I was not “confined” to a wheelchair, I was actually freed by it. Another person who has truly supported on me on this wheeled journey, is my brother. Sharing the same diagnosis, he has always been there to relate to, he has also changed my perspective. I feel like in many ways, we have helped each other to adapt to our lives. We have learned from one another how to accept and understand ourselves. There is never any pity between us, we are just regular siblings. And… despite popular myth, we do not, in fact, drag­-race.

For the first few years, I was a bit of a reckless driver to be honest, crashing into more than a few walls. My father loves to tell to a particularly humorous story from when I was in junior high school. One day he was picking me up from school for a doctor’s appointment. As he was signing me out of the office he overheard the principle grumbling to the secretary how the janitor had put a large hole in the wall with the floor cleaning machine. When my dad was hooking up my wheelchair in the van, he noticed a fine dusting of sheet­rock on one of my tires where I had accidentally smashed into a wall, not the janitor. I was both a bit embarrassed and amused with the whole situation at the time.

I went everywhere as a rebellious teenager, the only limitation practically was the curfew set by my parents which I broke regularly. Every day was a new adventure for my friends and I in the neighborhood, during those long awaited summer months of freedom. I wasnotorious for tracking all nature of filth onto the carpets of my home, from freshly cut grass to melted road­tar and everything in­between. On more than a few occasions, to theexasperation of my parents, I found my chair completely caked with mud. The word that most vividly comes to mind with this part of my youth is fearless, I was a wild kid who just happened to use a wheelchair.

Scan_Pic0027Daredevil driving aside, my wheelchair has given me so many opportunities: I raced around the playground in elementary school, I rolled myself to junior high, I sped through the halls in high­ school and now I zip through the Make­-A­-Wish Central New York offices where I volunteer. I have visited new cities, gone to movies, parties, restaurants, concerts and countless other places and activities. The very fact that I can move myself around each day, makes me so grateful for this wonderful tool. I have been able to live my life because of those wheels underneath me.

Despite all the great times I distanced my chair from my identity for many years, I did not want it to define me in any way. At first I saw my impairments as a solely negative aspect of my life, my wheelchair just an obstacle to be overlooked. These days though, my thoughts have shifted somewhat and I now realize that I do not want the fact that I use a wheelchair to be ignored, but rather have it embraced as part of my unique identity. It may be true that my chair may not define all of who I am but it is a major part my life that I am certainly not ashamed of.

I have learned so much over these past thirteen years and I continue to learn every single day. I have come to accept myself, to accept others and to speak out against the oppression of disabled people everywhere—my eyes have been opened. That is why I am so passionate about the accessibility of our society and the perception of all wheelchair users in our culture. I hope that with my words and with my life I have changed a few minds and enlightened a few people on the real life of a man in a wheelchair.

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Forward Unto Progress

Progress; one of the most important aspects of life, it is what fills us with purpose and what allows us to grow. In the world of disability, progress is absolutely key, individually and as a culture it is the catalyst for better lives. On a personal level, change is somewhat of a constant and something I have had to learn to embrace. Being disabled for over 15 years has radically altered how I see the world and who I am as a person. As I have grown older I have begun to reject my own internalized ableism and recognize disability as an indivisible part of my unique identity.

635660918521092486-689122-1-In 1998, my younger brother and I were diagnosed with Duchenne Muscular Dystrophy, a progressive neuromuscular disease. At first, this news was devastating for our family, it felt as if our future had been stolen from us. With little to be done medically, getting involved with the Muscular Dystrophy Association (MDA) seemed to be in our best interest. The organization represented the best chance to find a cure, our priority at the time. This was still in the era of the Jerry Lewis MDA Labor Day Telethon, a 20+ hour parade of absolute pity and exploitation. A telethon repeatedly criticized by disabled activists for its reinforcement of negative stigma.

I was just a child at the time, so naturally I went along with fundraising and general cure based advocacy, it simply felt like the right thing to do. Organizations like MDA rely on the feeling of powerlessness that many families face in order to raise money and awareness. It was my parents who eventually decided that instead of fighting for this misguided cause we would fight for independence and self-determination. We embraced the get busy livin’ path of Morgan Freeman’s classic monologue from The Shawshank Redemption. An object of pity is something we have never wanted to be.

90ba2341907df12049cff3104aecf850As the disease progressed and mobility became more difficult, the need for wheelchairs arose. This was something that I was extremely reluctant to accept, I somehow saw it as a failure on my part. At the time, I refused to see myself as anything other than normal, how could I be one of those people? Looking back, I realize that I viewed disability rather poorly, I was afraid to be seen as a disabled person. Even with a brother in the same situation and a fantastic support network, it took years for me to let go of the internalized prejudice I held.

I can admit that my views were quite problematic in the past but I can also confidently say that I have learned and continue to learn everyday. My life is a testament to the power of activism, my perceptions have shifted because of people like Stella Young, Ed Roberts, Judith Heumann and Fred Fay. The disabled communities on sites such as Twitter and Tumblr have taught me to be proud of who I am, to feel a sense of solidarity with other disabled people and to develop a passion for the betterment of disabled life everywhere.


With this blog, I hope to educate others about the disabled identity and point out the inherent ableism in modern society. I would like to share my thoughts and the thoughts of others in order to shift perceptions and foster a sense of community.

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