Deep Thoughts, from the Wheelchair-User POV

Having a spinal cord injury means thinking about the bigger picture. I’m not saying all of us have copious amounts of free time to wane philosophical, but it comes with a package when you sustain a spinal cord injury.

Is it God’s plan? How do I move past this? How can I be ok with using a wheelchair in public? These are the big questions we SCIers ask ourselves, and it’s not easy finding an answer. Sometimes, there’s no answer to be had, but there is however always a worthwhile, valid opinion from other people out there.

With that said, here are three phenomenal videos from people with SCI and other disabilities sharing their deep thoughts on aspects of living with a disability. Read this entry

SCI Superstar: Kristin Duquette

Long before American Paralympian Kristin Duquette became disabled, when she was 6 years old she had a dream – to one day become an Olympic swimmer. Growing up near the ocean in East Hartford, Connecticut, Kristin loved to swim, but her dream was in danger when she was diagnosed with Muscular Dystrophy at age 9.

Kristin however refused to look at her diagnosis as the nail in the coffin to her swimming career. Despite doctors telling her to not swim to preserve her muscle strength (she was diagnosed with a form of Muscular Dystrophy that is progressive), she went back into swimming and shocked everyone by showing it’s possible you can get a stronger through training even with progressive muscular dystrophy.

Read on for Kristin’s some awesome story of perseverance, athleticism and her new passion that was ignited while studying at Trinity college – her commitment to making disability rights a true human rights issue. Read this entry

10/4/10: No Free Rides, episode #69 – Ms. Wheelchair America 2011

Ooooh-wee. I’m excited about this one. In episode #69 of our podcast No Free Rides, I interview the brand new Ms. Wheelchair America 2011 Alexandra McArthur. You will be enamoured with this effervescent 22 year from from North Carolina, who’s new to using a wheelchair.

Can you hide disability with tight jeans and makeup? She did

 “If everybody’s not a beauty, then nobody is.” – Andy Warhol.
 When Laura Maffei was diagnosed with progressive Muscular Dystrophy as a young teen (the nerve disease that the Jerry Lewis telethon supports), she was told by her parents to hide her new condition, to mask the growing-in-strength symptoms – the encumbered gait, the inability to hold in her gut – for as long as she could because discrimination based on disability is one of the worst kinds of discrimination you can experience. And it is.

I can tell you from my own experience, from going from a healthy 14 year old blonde white girl to a very disabled-looking individual, you really see two vastly different life perspectives; and it’s heart-breaking. Some people will never like someone with a disability no matter how hard you try. It just won’t happen.

So when Laura Maffei, author of her just-finished memoir, How I Tried to Hide Muscular Dystrophy with Tight Jeans and Makeup (also known as Girl with a Secret. She’s currently looking for representation), was instructed by her parents to hide her condition (using control-top pantyhose, makeup, and a bag of excuses), I can’t actually say it was completely bad parenting. There were protecting her from negative life experiences for as long as they could. I can’t say I blame them. But Maffei knew there were other reasons her parents wanted her to hide it, the main reason chiefly being: Their over-concern with physical appearances.

“My mom always told us to hold in our stomachs and, from when we were 13, to wear makeup outside the house.” (And after being diagnosed) “I‘d even not eat or drink anything on days I was going to the beach with friends, to lying to my gym teachers about how many situps I did, to refusing to tell even close friends why I was walking with a labored gait in college.” “All that hiding is exhausting,” she says. “And even though my story is a specific one, I think women of all physical abilities feel compelled to hide or change things about their physical selves, things of which they needn’t be ashamed, but they are because our culture tells us to be.”

Laura eventually came “out” of the disability closet, and now gives speeches on her journey of self-discovery, in addition to writing memoir. Also, stop by her blog, Everybody’s a Beauty, where she’s compiling a collection of user-submitted experiences on disability and beauty, and the struggle that can come with that, which needless to say has become a topic close to her heart. Add yours here!