What is Disability?

To be clear from the start, I have no answer for that question. The dictionary defines disability as “a physical or mental condition that limits a person’s movements, senses, or abilities.” My friend Emery, an internationally renowned dancer, teacher, performer, activist, musician, painter, and writer who happens to have cerebral palsy, says disability is not being able to ask for what you need. Since his speech is fluent but difficult to understand at first pass, he considers asking to be possible in ways other than the spoken word.

I got to thinking about this for two reasons. The first is because when I was shopping for groceries yesterday a woman came up behind me in an aisle as I was sitting in my wheelchair, bag full of groceries around my neck (my preferred way of collecting items as I roll around the store), staring up at the shelves above my head. She politely asked if she could get something for me. I hesitated, ready to say “no, I’m ok”, but instead I said “sure.” She reached up and retrieved the ice cream pops my mother requested, saving me the hassle of unhooking myself from the bag and standing up to get the pops. Nice, right? Yes – except I struggled inside because I wanted her to know I could do it myself. I wanted her to know I am not limited in my abilities. I wanted her to know I am not disabled. Because I’m not. And yet I am – in some ways.

This gets better because less than five minutes later, I turned the corner into the beer aisle where I knew I would have to find someone to help me get a six-pack of bottles from the top shelf in the cooler. I know it’s too risky to attempt to maneuver the flimsy cardboard and shaky bottles off the shelf while I stand bracing myself against the cooler, reaching high above my head. As luck would have it, the same woman appeared in front of me – we were literally walking/rolling toward each other. I asked her if she would help me again, BUT, instead of just accepting her gracious acts, I had to tell her that I really needed help with the beer and didn’t really need it in the ice cream aisle. She smiled, non-plussed, handed me the six-pack and went on her way. Immediately, I was asking myself why? Why did I have to say anything at all except thanks? I know it’s because still, after all these years of living, working, skiing, dancing, doing everything and anything myself, I’m still afraid of being seen as disabled. The knot that forms in my gut when I think someone may think I can’t do something – that I’m crippled or disabled – propels me to explain myself, to declare that I don’t need or want help. But, who would that be other than me projecting my own mess onto an innocent other? It’s not something I feel proud of because I wonder if I really still do believe that needing help, having a disability as defined by Webster’s, diminishes me. I don’t want to believe that because I know it doesn’t diminish any of us, and I know, as a friend said to me at the book launch party “everyone has a wooden leg”, and I am fortunate in many ways that mine is visible, and that I’m offered help, and noticed, and remembered, because my “wooden leg” is seen by others. Some of us have hidden disabilities and are not offered the same consideration.

That brings me to the second reason this topic has been with me of late. This past week, I saw two movies starring Daniel Day-Lewis and it seems to me his character in each had a disability. In “My Left Foot”, Christy is a boy growing to a man living with cerebral palsy, and a body and attitude much like my friend Emery’s. His family refuses to shield him from life and he grows up sharing in all the activities his siblings pursue. He learns to write and paint with his left foot, and eventually types a memoir with the same foot. His biggest struggle is getting beyond how others view him. In the other movie, “Phantom Thread”, Day-Lewis’ character, Reynolds, is a renowned couture who runs a famous dressmaking house in London. He’s successful, well-appointed, and so obsessed with his art and career that he is unable to soften enough to participate in human pleasures. He appreciates his staff, including Alma, his latest muse, his clients and his sister, but is unable to see them as human, unable to connect with them as people. Alma, though young, recognizes this (is it a hidden disability that limits his movements, senses, and activities?) and finds ways to help him soften and allow her to love the soft, needy places within his outwardly staid and proper being.

These are both incredible movies, very different, and yet character studies that raise some of the same questions for me. How do I limit myself by keeping myself separate? Why am I still afraid of my needs for human contact, assistance, compassion? When I look back at the journey I detail in my book Joy Ride, I know I’ve come a long way. I love that I notice moments when I’m reacting, rather than responding, to the generous invitations of others. Years ago those moments would’ve reflexively erected a wall between me and the other, blurring my awareness and pushing me toward some unhelpful coping mechanism. I love that I have friends like Emery, and that I get to meet characters like Christy, Reynolds, and Alma, who keep me real and present with what’s important.

Another favorite saying of Emery’s and one I’ve shared millions of times:

We’re all just temporarily able-bodied.”

I take that to include our bodies, minds, and all of our other senses. They are unique gifts and tools, not to be taken lightly, to be embraced as they are, and shared. They are aspects of our human being-ness that we can come to know and understand as we live our lives. We can learn to be with these one-of-a-kind aspects of ourselves as they are, and as they change with our growing awareness and willingness to be present over time.

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