Allison M. Boot

Changing the World, One Book at a Time…

A look at what it means to embrace a disability

by | Nov 18, 2017

A look at what it means to embrace a disability

When I first began working here at the Access Center, other staff members would sometimes talk about the difference between accepting a disability and embracing a disability. I believed that I understood the difference. I thought if someone had accepted his/her disability it meant that he/she was okay with the fact that he or she had a disability and would always have to live with the challenges that accompany it. I viewed embracing a disability as accepting it and agreeing to live life to the fullest in spite of it. It was not until the Access Center hosted a screening of the documentary “Lives Worth Living” that I truly understood what it means to embrace a disability. The documentary talked about every milestone of the Independent Living Movement from the Architectural Barriers Act of 1968 to the signing of the Americans with Disabilities Act (ADA). The aspect of the film that particularly struck me was the footage of people with disabilities climbing up the steps of the Capital building in the fight to get the ADA signed. A portion of the footage focused on a young girl, who could not have been more than six or seven, climbing the steps alongside people three and four times her age. The determination in her eyes as she made her way up the steps was as evident as the anger in the crowd at the Capital building that day. Watching her struck a chord with me because I can remember a time when I was that determined for an entirely different reason.

Despite having been born with my disability, it took me longer than one might think to accept it. Growing up I was one of just a few kids with disabilities in mainstream classes throughout my school district so it was obvious to me that I was different. I didn’t see my difference as things I had to come to terms with, but rather things I had to overcome. As a young girl I was determined to someday be able to walk. Instead of discouraging me or telling me to pursue a more realistic dream, my family was very supportive. So supportive that they took me to have a type of therapy called Biofeedback, which has helped people with conditions similar to mine gain the ability to walk. We went down to Miami for two to three weeks every summer for years so I could go through therapy sessions. As I got older and became more involved in school activities, I decided to stop. I will never regret having done the therapy. It significantly improved my weight bearing ability as well as the overall strength of my back and I am sure it had a part in making me the person who I am today. The doctor who developed this particular method of therapy, Bernard S. Brucker, was brilliant. I have missed him and the cow jokes he was known for telling every day since I decided to stop doing the therapy. But at that time, I began to realize that in order to truly move forward in life, I was going to have to focus on living with my disability instead of overcoming it. However, it was not until I went to Wright State University, saw others with disabilities doing amazing things with their lives, and became part of a community of people with disabilities that I accepted my own disability.

I am embarrassed to admit this now, but I used to think that if I completely embraced my disability and committed to advocacy efforts, that my disability would be the only thing people thought of when they thought of me. Yes, I am a person with a disability, but I am also a daughter, a sister, an aunt, and a writer. It has always been important to me to have people identify me as something other than the girl in the wheelchair because who I am goes so far beyond the hunk of metal I have to sit in everyday. There was footage of a few different protests in the documentary. At each protest, Disability Rights Leaders like Judy Heumann and Wade Blank emphasized that people with disabilities were fighting for a civil right. At one protest fighting for accessible public transit, Judy told a reporter that people with disabilities have the right to have a job, raise a family and use the bus or train like everyone else. To me that comment was genius. After hearing it, I realized that my fears about completely committing to the fight for disability rights and losing the rest of my identity were ridiculous. I understand now that the other parts of my identity are just as important to the fight for disability rights as my having a disability is. After watching the documentary, I believe that the only way people with disabilities are going to get the rights that the rest of the world have is to show the rest of the world that even with our disabilities we are like them.

When it comes down to it, all people are people, disabilities or not. To win the fight for civil rights, people with disabilities have to show the world that we are more than having a spinal cord injury, Cerebral Palsy, Muscular Dystrophy, Spina Bifida, or any other disability. We have to show others that we are mothers and fathers, employees, and sons and daughters just like them. I realize now that embracing a disability is not about showing that you are or can be those things in spite of your disability, but about showing that you are or can be those things with your disability. It is about showing the rest of the world that those who embrace our disabilities believe our disabilities are a part of who we are, not barriers that we live in spite of. It took me a while to fully embrace my disability so I am not going to urge you into embracing yours. Instead I am going to say please join the fight when you are ready so that our kids’ generation won’t face the same obstacles as our generation.

Note: This article was originally published in the Fall 2012 edition of the Access Center for Independent Living newsletter, the Accessible Community Examiner, which I wrote for the two and half years I worked there. The Access Center for Independently is a non-profit in Dayton, Ohio that works to ensure that people with disabilities have full and complete access to the community in which they choose to live.