Disability Redefined
By Kim Lan Grout, Redefining Disabled Project
Meet Kim and learn more about the Redefining Disabled Project at Abilities Expo Bay Area, November 21-23, 2014.
My day starts before my two toddler girls wake and ends after they've laid their heads back down to dream. My husband and I are often left as puddles of exhaustion, usually covered in food, tears, paint and always something sticky. My days as a mother are not unlike those of many mothers: filled with both highlights and challenges, with toddler tantrums and snuggle-fests, with lost keys and hard lessons, play dates and outings, diapers and domesticity. But as an above-the-knee (AK) amputee, my days are also filled with another kind of highlight and challenge.
On the one hand, my amputation has made my life with Klippel-Trenaunay-Weber Syndrome (KTWS) infinitely better. Long gone are the years of pain and struggle I experienced pre-amputation. But my biggest challenge is making it through each day without falling down with my baby in my arms, crashing to the floor with me. Falling comes with the territory of being an AK amputee, especially on days when I'm a little extra tired and not cognizant of my steps or when there's juice spilled on the floor, both of which happen often in my home.
While any day I make it through without falling is an enormous personal accomplishment, I struggle to find someone to whom I can relate on that level when I look to the media. There I often find sensationalized, even heroic and sometimes exploitative stories of people with disabilities. With the objective to both reveal and appreciate the lives of people with disabilities in their most raw, unglamorous states, the Redefining Disabled Project was born.
The Redefining Disabled (RD) Project is a series of photographs and narratives that honor each participant's abilities and lays bare these extraordinary individuals as they live and thrive every day in this world, in their bodies, though the physical challenges may be great. After recently participating in the RD Project Abilities Expo Ambassador Eliza Riley said the project "takes a close look at the disability culture and what we want it to portray and gives not only a written view of our world and who we really are, but also allows us and society to explore ourselves through photographs."
It is through the RD project that participants like Eliza—or models, as I've been referring to them—and their families and friends realize and celebrate the seemingly small accomplishments in our disability journey. I find that the interview and portrait process has been cathartic and enlightening for everyone involved. The interview process has "brought me much more self-healing and self-confidence than I ever thought possible," said Patty, a San Francisco Bay Area resident. "It offers understanding, a community and hope."
Patty had such a positive experience as an RD model that she urged her college friend Jamie to apply. Jamie shared that the project has inspired her to start a dialogue with friends and family about her disability, which she had avoided for years. Another positive consequence is the validation and sense of community growing from the models' shared stories.
The project has given me precisely what I'd been searching for as well. Until a few weeks ago, I'd struggled to relate to somebody able like me, but am now proud that my project and my own disability journey can offer others safety, healing and empathy. The fact that the RD Project is spearheaded by a woman was especially impactful for Eliza. "This meant a lot because I did not need to worry about saying anything that would spark rejection and/or fear. I could really sit down with her and speak my truth," she said.
Since the project's inception only one month ago, we've interviewed and photographed seven models and have several more lined up in the coming weeks. We welcome anybody interested in participating to apply on www.RedefiningDisabled.org, but especially encourage those who live in or can travel to the San Francisco Bay Area. In the future, we hope to visit models all over the country to better understand what the disability life is like for people in both rural and urban areas and across cultural and socioeconomic lines.
Brian participated while he was on vacation in the Napa Valley and articulately summed up the project's goal. "How people persevere through adversity and survive is a story that everyone needs to hear. The more people that hear that story breaks down the barriers one step at a time," he said. By participating in the RD Project, "I feel I can make a difference and sometimes be the difference."
It is that perseverance through daily struggles that the RD Project aims to showcase. We are strong, able individuals who scale our own personal Everests, pick ourselves up when we fall, dust off the cereal and glitter (in my case), and continue to revere the seemingly small accomplishments of our days.
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