Re-making the Story of Disability from the Freedom of a Wheelchair
Ever since I can remember I have been drawing painting, sewing. My dream was to become a fashion designer. However, at the age of 13, I was in a car accident while on a family vacation in Mexico. I injured my spinal cord and was paralyzed from the chest down. I thought my dreams would be impossible from that moment forward.
However, with the support of many people, I relearned to draw, paint, and eventually sew. I went to college for fashion design and theater arts, traveled to Paris for a design competition, and England for performance programs, and became a costume designer.
Along the way, I met others with spinal cord injuries and having these people in my life made a difference in my confidence level and happiness. It was great to have others who understood exactly what things were like for me. I created the nonprofit BACKBONES to provide that peer support that many with spinal chord injuries lack. In addition to giving people the opportunity to connect with others on a one-to-one basis over the phone, in person, or via web, BACKBONES also hosts many events and awareness campaigns nationwide.
As I have learned to marry my skills in art, theater, and social good, BACKBONES has become about storytelling—for those with SCI to connect as humans, for knowledge, conversation, and understanding.
I once searched on Google to find images of "disability" and "wheelchairs". I was hoping to see something real, but the image results showed two results: PITIFUL/ILL/HOPELESS or INSPIRATIONAL/SUPERHUMAN images. Contrary to popular belief, people with disabilities can also live happy and successful lives, are active members of their communities, and make important contributions to society. So, through BACKBONES I decided to use positive photographs to tell stories that will challenge current perceptions of SCI and begin to break down multiple barriers for those with disabilities.
We picked 22 photographers and matched them with 22 individuals with SCI across the country. They are currently working to create photo essays that focus on the accomplishments of people after spinal cord injury and paralysis. It will exhibit in Chicago at the National Museum of Health and Medicine Chicago on June 29, 2013; in Portland at MercyCorps in the Fall of 2013; Los Angeles (TBD); New York (TBD); and beyond as more funding comes available.
In order to reach as many people as possible with our efforts, BACKBONES partners with organizations serving those with SCI, as well as those just doing good. We believe in collaboration and community with all our neighbors around the globe. So, to celebrate community we will participate in Neighborday with the 5th annual BACKBONES 5K Run, Walk n Roll. The funds we raise on this day will allow us to continue to host events in different cities and engage their communities with others across the nation.
BACKBONES events have always had an education and awareness component to them, whether it’s a fashion show with models in wheelchairs, a scavenger hunt where non-wheelchair-users must complete activities from a wheelchair, or a 5K with extra handcycles for the able-bodied participants to try out. We aim to remove the fear and stigma behind the “wheelchair” and disassociate it with the words “limitation”,“weakness” and “pity”. We need to instead replace those words with “independence”, “freedom” and “ability”—because that is what a wheelchair is for a person with a disability—FREEDOM to be independent and able.
These projects and more to come will challenge current stereotypes of the lives of people with spinal cord injuries (SCI) change views leading to better access to housing, employment, education and recreation for people with disabilities. If you want to be a part of what we're doing, join our Razoo campaign and check us out at BACKBONESONLINE.com.
Hang out with your neighbors on the last Saturday of April (a day we're calling "Neighborday"). Click here to say you'll Do It, and here to download GOOD's Neighborday Toolkit and a bunch of other fun stuff.