For as long as I can remember, there have been groups out there offering me a way to walk. They are, for the most part, rehabilitation-oriented, offering to fit me with whatever orthotic solution they believed in, and then work me to exhaustion with rehab therapy to use it.
Two things have seriously turned me off to this side industry of ambulation.
First, I did the braces and crutches thing during my original rehab stay in 1973. It was clear pretty quickly that it wasn’t going to be a daily mobility solution. There was always a real danger of falling (because it is essentially teetering on stilts), there was a severe limit on what I could carry with me, and wherever I would go, I would be unlikely to find a properly cushioned place to sit so I wouldn’t get pressure sores on my skinny butt.
And it was exhausting. I’ll go with the chair, thanks.
But the thing that most thoroughly turned me off to putting myself in these people’s hands was the way they were marketing (the way they still market) to me: “Get back up to eye level with people and restore your self-esteem.”
Yes. The advertisements say this in essence, sometimes word-for-word. And it offends me.
I don’t need to stand up to have self-esteem, thank you.
The quest for self-esteem is tricky enough as it is. Mine has always been pretty good, though I have my moments of self-consciousness and being more than a little hard on myself. But the state of my self-esteem is not based on whether I’m standing up and making eye contact with people on a plane parallel to the ground. It’s about whether I’m being responsible and disciplined in my work, whether I’m taking care of myself or over-indulging in various vices (vanilla lattes, chocolate, and iPhone games, at the moment), and whether I’m being present and compassionate with people, especially the people I love.
Being paralyzed can certainly be a challenge to your self-esteem in the beginning. The initial period of adjustment to traumatic paralysis is undeniably intense. Your very sense of self is thrown off its axis, so it’s no wonder that your sense of self-esteem can go more than a little off center.
But that’s an aspect of the process of adjustment, not a characteristic of paralysis by definition. There are too many reasons outside of disability why someone could have self-esteem issues. Your father tell you you’re worthless, maybe? That seems to do the trick for a lot of people.
The fact (and it is a fact) that there are so many people with disabilities out there who feel just fine about themselves and their lives strikes me as totally clear proof that disability by itself does not irredeemably equate with loss of self-esteem. Take the current lineup of eLEGS test pilots. They all seem to me to be pretty grounded, happy paralyzed people.
Rather than disability being a threat to self-esteem, it can work the other way. When you become a person who society generally views as damaged, when you are a person who is generally expected to be sad or angry or dissatisfied just based on the fact of paralysis, then that prompts you to consider what your self-esteem should really be based on.
What most of us discover is that our self-esteem doesn’t have anything to do with the physical state of our bodies. We discover that the source of our self-esteem comes from inside, not from the outside. Because the outside is too skewed with such negative stereotypes and assumptions about disability that it’s impossible for those messages to be trustworthy.
Yes, that’s right: disability prompts people to higher levels of self-esteem. It’s a catalyst that asks us to view (and believe in) ourselves in terms of our values and our sincere effort to be good people. It’s an experience that demonstrates to us how miraculously adaptable we are, simply because we’re human. What I care about – and feel good about myself for – is whether I’m leaving more good than bad behind in the world.
And I promise you: those things have nothing whatsoever to do with being able to stand and look someone in the eye.
Berkeley Bionics, I’m thrilled to report, gets this. They aren’t telling us that we should want our own robotic exoskeleton so we can feel better about ourselves. They’re offering a new technology that will extend my options in life in ways that my old braces and crutches never could have. With eLEGS, you don’t feel like you’ll fall over easily, it’s not exhausting, it comes from a technology that is all about carrying stuff on your back, and I’m counting on them to engineer a cushioning solution so I can sit down wherever I go.
But given all that, if they were operating from the belief that their mission is to rescue those of us with paraplegia from the obligatory self-doubt (if not self-hatred) of paraplegia, I wouldn’t be adding my voice to this blog or enthusiastically supporting their work as I do.