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Monday, May 15, 2017

10 People Who Wouldn't Give Up Their Wheelchairs If They Could

Wheelchair Users Say Their Chairs Give Them Freedom, Not 'Confinement.'
"Wheelchairs and other adaptive equipment are part of individuals' personal space," one expert says. "It is in many ways an extension of somebody's body or a part of their body – that is the way typically most people will explain it." (GETTY IMAGES)

Robyn Powell's first wheelchair was hot pink. "I remember being a very bad driver," laughs the now 35-year-old attorney and researcher in Framingham, Massachusetts, who was 3 at the time. "Fortunately, I've improved."

US News Report By Anna Medaris Miller | May 11, 2017                                                                      
Powell was born with arthrogryposis, a joint condition that prevents the use of her legs and limits the use of her arms. Without her chair, she says, she wouldn't have gone to college or law school, and wouldn't even be able to leave the house today. "My wheelchair is everything to me," she says. "I consider it a part of me."

Powell's perspective is common among wheelchair users, says Linda Mona, a psychologist and consultant in Rolling Hills Estates, California, who specializes in disability issues and also uses a wheelchair. "Wheelchairs and other adaptive equipment are part of individuals' personal space," she says. "It is in many ways an extension of somebody's body or a part of their body – that is the way typically most people will explain it."Most people who use wheelchairs (or, as some say, "chariots of independence"), that is. Other people, however, too often explain it as something that users are "confined to" or "bound by," wheelchair users say.

"That suggests … that the wheelchair is holding me back when it's enabling me to live my life," says Powell, who's completed Avon's 39-mile breast cancer walk and spends her free time with her partner and their two dogs. The terms evoke pity too, she adds. "I don't want to be pitied, and I don't want to be seen as some sort of inspiration just because I'm living my life."

Here's what nine other wheelchair users want you to know about life with a chair:
1. "It's liberating."For years, Amy Nicholas avoided looking people in the eyes when she went out in her wheelchair, which she began using part-time around age 18. "I'd get the look, 'I'd rather be dead than be you,'" she says. But now, the 54-year-old attorney at the National Council on Disability in the District of Columbia, credits her power chair, which she uses full time, with giving her the capability to "do the most basic things" like work, cook, travel, shop and go to the park with her two kids, who she's raised largely on her own. "I am a wheelchair user," says Nicholas, who has a progressive neuromuscular disease called Charcot-Marie-Tooth, "and it's liberating."

2. "It's just like everything else that accommodates daily living."Here's an analogy: A scooter is to its rider what a wheelchair is to its user. That's the way Chris Noel, a 42-year-old accessibility coordinator for New York City's Department of Parks and Recreation, sees it. "A wheelchair user is … similar to a person that uses a walker, cane, a baby in a stroller or a cab driver," says Noel, who's used a wheelchair since a slip-and-fall injury in 2003. "It's something that's used … to get from point A to point B." Once people arrive at point B, he adds, they're not necessarily tethered to their chairs: "Just like all of the other devices," he says, "you eventually have to leave it to go to bed and or to shower."

3. "Walking isn't what it's cracked up to be."As a kid, Alice Wong got left behind. "I couldn't play during recess for fear of falling or being knocked down," says Wong, now a 43-year-old research consultant and disability activist in San Francisco who was born with spinal muscular atrophy. That all changed around age 7, when she got her first wheelchair. "I felt like I came into my own," Wong remembers. "I had power and control through this device." Today, Wong's chair conserves energy, slashes travel time and even supports her health and well-being by adjusting in ways to counter the effects of sitting all day. "I feel the most centered, in control and comfortable in it," she says. "It's not perfect, but it's part of me."
 Alice Wong hangs with R2D2

4. "It makes me feel sexy."
Kings Floyd's wheelchair is her "power color" – red. "It makes me feel sexy," says the 22-year-old, who works for the National Council on Independent Living in the District of Columbia. While at one point Floyd, who has muscular dystrophy, hated her chair because she blamed herself for being unable to prevent the progression of her disease, she now considers it a vehicle of independence and her trademark accessory; it's covered with bumper stickers, Harry Potter quotes and other decorations. "It allows me to show off, to go fast, to be cocky, to fill out a space I didn't think I deserved," she says.

5. "My career got better."Jessy Yates' parents and doctors used to warn her that if she didn't commit to her extensive physical therapy regimen, she'd end up in a wheelchair. Today, the 23-year-old actor in New York City couldn't be happier that they were right. "When I first got my chair [in college], I felt defeated," says Yates, who has cerebral palsy. But she quickly grew to love it. "For the first time in my life, I could go to bars, clubs and events without worrying about walking through crowds. I could carry my own groceries and trays of food and coffee." An added bonus? Her career improved because she could fully immerse herself in roles rather than worrying about falling on stage. "Being a chair user," she says, "has only made my life better."

6. "If it wasn't for my wheelchair, I wouldn't be a mom."This Mother's Day, Shelly Loose (photo below) is celebrating her 30th "quad-iversary," or the anniversary of the day she swerved to miss a deer and became a quadriplegic. "It's not a day when I look back and go, 'Wow, I've lost so much,'" says the 56-year-old former band director in Grand Rapids, Michigan. "I look back and go, 'Wow, look at all I've gained.'" For instance: Loose met her husband, who has the same spinal cord injury, in rehab. The pair had a child together and raised his children from a prior marriage. Loose has met many "wheel friends" through Ms. Wheelchair America, for which she serves as president. "What [my husband and I] have now, we wouldn’t trade for what we had when we were able-bodied," she says, "because now we truly appreciate life and we know what unconditional love really is."

7. "I got a wheelchair and I got a life."Sam de Leve grew up "an indoor kid" who attended arts schools with no sports teams and trained as an opera singer. But after getting a wheelchair less than five years ago, de Leve – whose Ehlers-Danlos syndrome makes frequent injury near-inevitable – began swimming and then took up wheelchair rugby and racing before becoming a professional dancer part time. "I never thought I would be doing any of this," says de Leve, a 27-year-old in Los Angeles who also works in communications. "It's a huge part of my life and a really rewarding one."

8. "It's not a cakewalk, but everybody has lousy days."When Jim LeBrecht was 8 or 9 years old, doctors offered to amputate his legs so he could use artificial legs instead of the wheelchair he'd used since age 2. "Why would I want that?" LeBrecht, who has spina bifida, remembers thinking. "I’m on the playground playing kickball and basketball and baseball." No surprise: LeBrecht, 61, stuck with wheelchairs, and is now a sound mixer and filmmaker living in Oakland, California. "When you're born with a disability," he says, "you're not yearning for what you never had."

9. "I can't imagine where my life would be without it."
Growing up, Emily Ladau frequently opted for a walker and braces over her wheelchair because she thought they made her look "quote-unquote 'less disabled.'" But by high school, she needed the chair to make it to class on time. "I realized the longer I rejected it, the more I was hurting myself," says Ladau, a 25-year-old communications consultant in Long Island, New York, who has Larsen syndrome, a genetic condition that affects bone development. Now, she's living proof that choosing a wheelchair – which she used to view as a sign of laziness – is just the opposite: She runs her own business, maintains active social and dating lives, and frequently travels to Manhattan to see Broadway shows. "My wheelchair … allows me to live my life to the fullest," Ladau says.

Editors Note: I wouldn't give up my wheelchair and freedom also... Jim W.

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