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.
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.
As 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.