What It's Like to Be ‘the Woman With Juice'

Cheryl Marie Wade’s poem “I Am Not One of The” hangs above my bed, scrawled and torn from my journal. It’s stuck there with a single-use nametag; I am guessing I couldn’t find any tape at the time. I look at the poem every morning when I dress. I read it silently as I lift my leg into the bend of my elbow so I can put on pants and shoes, begrudgingly.

It reminds me that being “different” is a concept and I am not different from “normal.” I am just me. I hung up that page the day I found out all 5 toes on my right foot were sprained, and that no one would operate on someone so young until my bone spur got worse. I decided, as the executive of my body, to “f*** that.”

I have never understood the longing among the able-bodied to “be different” when I have spent my entire life longing for normalcy. Some people envy people with disabilities, cancers even, because it seems better than their desk job or they “want to know what it’s like.” I muse with my partner over the idea of switching bodies. He gets my sort-of messed up skinsuit and I spend a day in his, just to see what’s up. More recently, he has developed what seems to be the beginning stages of multiple sclerosis, with necrotic tissue spreading through his body like a slow burning fire. This sounds like hell to me, and my combined cerebral palsy, arthritis and a bone spur rising like a tiny mountain on my anterior ligament sounds like hell to him. We laugh, and we don’t want to switch bodies anymore.

Occasionally, I Google search my feelings. Usually the searches are something akin to “in love with best friend” or “how to tell who your friends are,” but today I searched for “what is it like to be disabled.” A silly question among thousands of silly questions. I don’t need to know the answer to this one. I’ve been disabled my entire life: I was born that way (cue Lady Gaga) and can’t change (cue Macklemore). I was befuddled with myself immediately upon pressing Enter, wondering what kind of people are Googling this in the first place. Voyeurs? Self-sadists? Likely, people with no experience in what professionals like to call a “diverse environment.”

I am not one of the physically challenged –
I’m a sock in the eye with gnarled fist
I’m a French kiss with cleft tongue

Sometimes, people ask me questions that they could probably find the answers to on the internet instead, making me wish more people would Google their feelings too. But I digress. The uninitiated question-asker may approach me for any number of reasons. I am the Steve Irwin of approachability. I want them to get close, but not bite. The questions are essentially baseless in my eyes, because the passerby has generated their inquiry simply by watching me limp, watching my arm move on its own, or watching my partner push my wheelchair into a coffee shop. Cripples don’t drink coffee, right? We get milk and bread for dinner and read our newspapers before bed. “Why do you walk like that?” “What’s wrong with your foot?” “Are you in pain?” Well, wonderful stranger, it’s none of your business. I used to quip back with “oh, I’ve got knee problems” but that response grew tired quickly; as I was often being told “you’re too young for that!” More recently I have taken to telling intrusive strangers that it’s none of their business, and that usually goes about as well as I want it to. At least they leave me alone.

I’m orthopedic shoes sewn on a last of your fears
I am not one of the differently abled –
I’m an epitaph for a million imperfect babies left untreated
I’m an ikon carved from bones in a mass grave at Tiergarten, Germany

My favorite inquiry would have to be “wouldn’t you rather not be disabled?” or some variant of such. Actually, no, I would like to keep my body the way it is now, thanks. Of course I could do without pain, without excess drugs and doctor’s appointments. But underneath the seemingly innocuous question is the more pressing one: “Wouldn’t you rather be more like me? More normal?” Normalcy is a construction that enforces the idea that I’m even disabled in the first place.

Recently, I bought a wheelchair. It feels recent; I suppose I bought it in August, and we are now approaching July. I was initially planning to use it when I went to Seattle, because most tourist activities are walking-based and pain can tend to suck the fun right out of some awesome situations. I ended up staying home, but the wheelchair has served me well regardless. Wheelchairs are different. I feel absolved from the looming responsibility of walking around and looking able-bodied. In a wheelchair, I can focus on what I’m doing, where I’m going, or something else instead of the fact that I am in an excess of pain. I become less approachable in some ways, and more so in others. Fewer people ask me what’s wrong, for fear of getting an answer they won’t like. However, using a wheelchair can make one seem powerless in the eyes of society, in some ways. I can still open doors, grocery shop and ride the bus as I please. And I guarantee my arms are stronger than yours.

I’m withered legs hidden with a blanket
I am not one of the able disabled –
I’m a black panther with green eyes and scars like a picket fence
I’m pink lace panties teasing a stub of milk white thigh

I am no longer worried about what people think of me—anyone who knows me knows I’m crippled and so long as they aren’t the purest form of asshole, will try to accommodate. Walk a little slower, take the road instead of the bumpy dirt path, or park a little closer to the shops.

I’m the Evil Eye
I’m the first cell divided

Sometimes the pain overtakes me. Countless nights of lying awake, unable to get comfortable in bed or even be held and comforted because my legs and feet would not allow me those luxuries. When I was younger they tried to fix me, but cerebral palsy is considered a “children’s disease” and there is, of course, no cure for brain damage. So adults are left to their own devices in a world that doesn’t know what it’s like to hear “you’re too young” and “just take some ibuprofen” at the end of every doctor’s appointment. Then you go home and cry with a bag of frozen peas on your foot.

I’m mud that talks
I’m Eve I’m Kali
I’m The Mountain That Never Moves
I’ve been forever I’ll be here forever
I’m the Gimp
I’m the Cripple
I’m the Crazy Lady

At least at this point, I no longer contemplate breaking my own feet in order to receive a comprehensive sort of fix for all the problematic hitches in my giddyup. Emotionally, I have improved. Physically, I can only guess at how well I am doing, relative to the other times in my life, since I have no baseline of painless days for comparison. But I guess we are all guessing at something, aren’t we.

I’m The Woman With Juice.