I just received a call from the medical supply company to follow up on my doctor's order for a power wheelchair, I tried to explain why I needed one. For someone who works with people needing wheelchairs all of the time, the employee was completely baffled by why I might need a wheelchair if I didn't use one inside my home. When I said that I don't do my instrumental activities of daily living she said: "I don't mean to be rude, but what do you do all day?" I tried to take a moment to explain the type of illnesses I live with and how I would use a power wheelchair, but she seemed uninterested and, frankly, clueless.
It is hard enough to ask for a wheelchair of any kind. But when those who you hope will support you--and understand disability in all of its diversity-- are dismissive and unhelpful, it makes the process even more difficult. And to be fair, she was rude! It's also fairly clear that I'm in for another uphill climb with the insurance company, since so little is understood about ambulatory wheelchair users.
Who are wheelchair users? Who needs a wheelchair? Do *I* need a wheelchair? Do I *deserve* a wheelchair? Those are the questions an ableist society asks of people like me.
For 24 years, I've been unable to go to a museum, to a grocery store, to a park for a stroll along a path, to a local arts festival or anywhere else that requires standing still or walking any distance, unless someone is pushing me in my manual wheelchair. When I began feeling better, I tried to go to these things without using the Rolls because society has told me over and over again that it's better to walk in this world, not roll. That I'm doing so much better if I don't use a wheelchair. But no one talks about the consequences of not using a wheelchair.
Isolation. Inability to be out in the world. Lack of independence to do things myself. Missing out on things outside my home. Complete and total flare of symptoms from deciding that I should 'just walk it' instead of 'roll it'. Not being able to go anywhere for months at a time while in relapses.
We live in a world that likes to define wheelchair users in a black and white way--either you use one or you don't. Either you need one all of the time or you don't need one at all. But there's always a gray area for everything in life--and I'm an ambulatory wheelchair user. If I want to be a part of the world, I need to use a wheelchair. If I want to get out by myself, it needs to be a power chair of some kind.
Last week, I spoke with both my PCP and Dr. Rowe about upgrading to a power wheelchair of some kind--technology has changed a lot since I got my manual chair a decade ago and chairs now come with little power packs! The clunky old power chairs are now sleeker, lighter and more manageable.
As I asked about getting a power chair--especially given that my primary caregiver is 77 and pushing me is getting more difficult--I could feel the messages of society bouncing around in my head, my heart pounding in my chest and a feeling of embarrassment and shame. Dr. Rowe said to me: "You are not trying to be disabled." Both he and my PCP thought getting a more usable chair would be an important thing for me to do.
I know how I've felt at my best. I know how I've felt at my worst. Had I been willing to use a power chair or even the manual chair more, even during my times of improved well-being, I would have had more freedom, not less. I could have done so much more.
Looking forward, I realize that part of my acceptance is that of being disabled for life--of a lifetime of ups and downs in functioning. I feel a great sense of ambivalence about getting a power wheelchair. Even with using my chair now, I dread the looks. I dread the questions and stares that say: why is she using a wheelchair? I just saw her walking! I just saw her get out of her chair to get in and out of the car, to go to the bathroom, to take a photo! As I read in a NYT opinion piece by Sara Slice who lives with dysautonomia and uses a power wheelchair: "When I walk away from my chair, bystanders sometimes act like they’ve either witnessed a miracle or caught me in a lie." She nailed it!
While I celebrate my courage to finally take this step after almost a quarter century of disability, I still feel shame and guilt. I feel the ableist world around me not 'getting it'. And I feel a deep sense of grief over a body that betrays me over and over again. I want my desire to be out in the world to trump anything that others think about me.
I owe a special thank you to my friends. To Mieke for planting the seed by sending me the NYT Opinion piece by a woman with dysautonomia who got a power chair. To Jean Metzler, for her character Rachel and her bedazzled wheelchair in The Matzah Ball. To Megan and Katie, and the community of disabled people I have met on Instagram (shout out to Sara), who's courage paves the way for people like me to ask for what I need, who've taught me that a wheelchair is a tool for more freedom, that being able to walk somewhere or not isn't some sort of measure of our worth or success in life. I knew all of this, of course, but I didn't have the self-compassion to tell myself these things. My heart's ability to accept and love my own disabled self is riddled with internalized ableism. My heart's ability to embrace others with disability is wide open and loving. There's a lesson in that right there.
Photos: How My Wheelchair Opened Up My World