Time Magazine, in a nod to eLEGS as one of the year’s 50 hot inventions, refers to walking for paraplegics as a “cruelly unattainable goal.” Television reporters like Ali Velshi of CNN gush with emotion at the notion of a paraplegic on their feet instead of their butts, repeatedly using the “confined to a wheelchair” language. (I don’t consider myself confined to it; I’m liberated by it since I’m paralyzed!) The coverage is almost entirely overwhelmed by the notion that nothing could be more important — or more inspirational — than rescuing us from the prison of our wheelchairs.
Do NOT get me wrong. I’m totally psyched about eLEGS. I completely believe in supporting evolving technologies, just as I believe in supporting the basic science that will lead to regeneration of the spinal cord. But these things are not expressions of my inestimable suffering for not being able to walk. They are wise investments we make which have the potential to improve quality of life.
That doesn’t have to mean that the quality of my life is poor because I’m paralyzed. It means that the quality of my life can be better, and who is that not true for?
But I get it. A reporter is looking for the drama. They are looking for the emotional impact of the story. So of course they are going to play up the miracle of the paralyzed walking again for all it’s worth. With entirely good intentions, of course.
They will laugh in my face when I try to make my case. “Katie?” (Couric.), I would say. “The real story here is actually a balance, where you present people with disabilities as an active, vibrant population who are modeling how miraculously adaptive we are as human beings. You convey that wheelchair design has made incredible advances, extending mobility, improving quality of life for people with paralysis. eLEGS is the next step forward, if you will, on a continuum of innovation and design and problem solving that has been under way for years. The story of eLEGS is about how it will extend options for people who are not the damaged goods society believes them to be.”
“Ha! Are you kidding???!!!,” Katie says. “My producer will NEVER let that pass. That story’s a dud! eLEGS is bringing cripples to their feet, dude!! You think we’re going to pass up on playing that angle??!!”
Sigh. Yeah. I get it. Sure.
One of the reasons I want media to present an accurate picture of life with paralysis is as simple as I want to be seen accurately for who I am and for how I live my life on wheels. They are really getting it wrong. But it goes deeper than that.
Rehabilitation stays are criminally short, costing people the ability to achieve the potential that is objectively there for them. People with disabilities are living in institutional settings for lack of funding and wherewithal to provide (less costly) community-based services. The amazing wheelchair technologies that exist are too often denied by funders (as eLEGS might likewise find itself struggling, as the iBot found to its eventual demise). And an employer asked to consider hiring a person with a disability is less likely to view that person as a whole, capable contributor if they are viewing them through the lens of being a person who is suffering by the simple fact of wheeling rather than walking. Or blind. Or deaf. Or of short stature. Or missing a limb or two. And so on.
The costs of this are real. These well-meaning emotional reactions to eLEGS ironically are costing people the quality of life that eLEGS is exactly committed to enhancing. We lose the contributions that people with disabilities would be making to our society (and therefore less need to collect benefits and entitlements) if they weren’t disabled by the core spirit that underlies this style of reporting. It purports to celebrate, but the premise is clear: disability is something to try to spare people the suffering of, rather than a characteristic of people who we want to be as independent, active, and honored as possible. People whose independence is worth whatever investment we need to make.
This is de facto discrimination. From the best of intentions.
For years, disability advocates have been working so passionately to move disability away from being seen in medical terms, freed of the automatic assumption of it as a tragic state. It’s the reason people cringed when Christopher Reeve emphasized recovery, reinforcing disability as something to which people should — and would naturally want to — be cured of. (The Reeve Foundation, by the way, invests heavily in quality of life, not just research.) It’s the same problem with Jerry Lewis and the Muscular Dystrophy Labor Day Telethon.
And so we see it again now, the focus only on breaking the chains of wheeling, emphasizing once again that people with disabilities are meant to be objects of society’s efforts to relieve us of our impairments, rather than getting stuff out of our way, giving us great tools (like eLEGS!!), and leaving us to live our lives. Just like everybody else.
CNN’s Ali Velshi, by the way, gets points. He asked Amanda how it will enhance her life, and she talked about being able to get out on trails that are inaccessible by wheels. THAT’S the point!