A New Reality: My Life as I Lose Mobility

My own body has recently demanded that I check my privilege.  I’ve written before about some invisible illnesses and disabilities I’ve been dealing with for years (some since birth), but they didn’t prepare me for the reality of losing mobility.

Several weeks ago, I began regularly using a cane to walk, thanks to my rapidly deteriorating knees.  Then my walks even with the aid of the cane became prohibitively painful, to the point that errands that kept me on my feet for over an hour left me in such agony that I could barely shuffle inches at a time.  I’m now the proud owner of a shiny new wheelchair, and the purchase was, frankly, rather humbling.

My impaired mobility has forced me to look at everyday tasks in an entirely new way. In going to the bookstore shortly before acquiring my chair, I couldn’t just stride through the doors to my destination, I first had to size up the half-dozen stairs at the entryway to plan my attack. Should I use just one leg to raise myself, or alternate between the two? On which side should I use my cane, and on which side should I bolster myself against the banister? Circling the store would require more strength than I could manage; what’s the most effective way to hit each of my favorite sections with the least amount of walking? Since my eyesight is too poor to be able to read the bottom shelves, and I can’t kneel to peruse the titles, should I risk the pain of sitting on the floor (and the inevitable horror of having to stand up from that position) or just skip the bottom rows entirely? There are so many things I took for granted every day, and each new one I encounter is a punch to the gut, demanding that I recognize yet another privilege I’ve lost.

I was recently out at a restaurant, using a birthday gift card to nom some tex-mex. My partner and I had planned to see a movie afterward, and as he dropped me at the door to the restaurant, I started to panic. He’d left me to use my cane in the restaurant, rather than having me park with him and use my wheelchair. As he dropped me at the door, he asked, “You’ll be okay to walk to the theater, right? It’s not too far?” The theater was only a couple hundred feet down the road from the restaurant. I nodded my agreement and exited the car.

During dinner, I broke down. Tears filled my eyes and I tried to explain to my partner why, no, I wouldn’t be okay to walk to the theater, and how I have to be left to assert for myself when I was feeling capable of walking, rather than having the assumption made with even an inquiry.

To most people, the walk to the theater is barely a blink away, and on the surface, it’s a walk I could handle. But there’s so much more to it that an able-bodied person wouldn’t think to consider.

For those not familiar with it, I suggest first reading The Spoon Theory, as it does an excellent job explaining the inherent difficulties of using able-bodied logic on a disabled person. For my particular example, here is my task as it was laid out before me:

Able-Bodied Person: It’s just a short walk to the movie theater, it shouldn’t be a problem.

Person with Disability(ies): Okay, first I need to get out of the car and step onto the curb. Then I need to walk into the restaurant, and stand waiting for a seat to become available. I’ll need to use the restroom before I sit down, which means walking to the back of the restaurant, maybe waiting in line for a stall, walking without my cane until my hands are washed and dried, and then returning to the lobby. When a table becomes free, I’ll have to walk to the table, dodging waiters burdened with trays, and food and beverages on the ground that could slip my cane right out from under me. I’ll then have time to rest while I eat before I need to stand up from my chair and walk back through the restaurant to the sidewalk. Then I’ll walk a couple hundred feet to the movie theater entrance, hopefully without having to dodge darting children or determined shoppers who refuse to share the sidewalk. Once I’m inside, I’ll need to walk to the ticket podium, then circle around to the concession stand, then walk the long hall to the individual theater showing my movie. Then I may have to ascend or descend stairs to find an available seat. I’ll be able to rest during the movie, and then will have to exit the theater (using any stairs I used to reach my seat initially), walk back down the hallway, through the lobby, and to the sidewalk where my partner will pick me up at the curb.

I never thought about all the little steps that go into even the simplest of tasks. This is just what it took for the act of dinner and a movie, it doesn’t acknowledge the spoons I had to spend to make it to the evening in the first place, or my need to keep some in reserve for navigating my narrow walkway at home and ascending my steep stairs to retire for the night.

I am lucky to have a partner who learns with me as I go, and who accommodates my increasing need for aid without complaint. He wheels me around stores when we go shopping, he fetches drinks for me from our first-floor kitchen so I don’t need to go up and down the stairs, he drops me at our back gate while he parks so I don’t have to cross the lot. But this comes with its own set of difficulties, as I struggle to accept that loss of independence, and suffer stifling feelings of helplessness during his absence. I also haven’t yet learned quite how to advocate for myself, which is the problem I ran into when my partner dropped me off for dinner. I struggle against my own pride to admit that I need help, sometimes a lot of help. When ability is assumed of me, I’m too ashamed to comment that no, I’m actually incapable of performing such a task.

These are the feelings I’m most bothered by. There is nothing shameful about disability, I know this logically, and feel it emotionally, but irrational fear clutches at my chest when I try to apply it to my own life. I’m afraid that others won’t understand it, that they’ll judge me for my weakness, criticize me for slipping into such need. I worry that those closest to me will abandon me when I need them most, full of scorn for how I’m unable to contribute to our interactions as I once could.

All of these fears are born of the ableism inherent in our culture. We’re brainwashed to see disabled people as simply less than a “normal” person, to scorn or at best pity them. It’s trained in me an instinctual fear of that scorn and pity, to the point that I denied my pain long enough to worsen it greatly. I didn’t need a cane, oh no, I could tough it out. I didn’t need a wheelchair, oh no, the cane was enough. Unfortunately, denial was not a strong enough drug to actually cure me of my pain, so here I am, wheeling around, and gaining a new perspective on my life.

My disability might be temporary; there are no promises either way, and I have no choice but to play the waiting game. While I do so, however, I’m going to try to enter this new chapter of my life with my eyes open. I don’t just want to be aware of my own actions and motivations, I want to learn to observe those of others, to learn as much as I can from this experience. If I end up walking away, I want to do it with a greater appreciation of my mobility, and a deeper understanding of ableism. And if I wheel straight on through the future, I want to do it with open eyes and a proud heart, confident enough to do for myself within my means, and humble enough to ask for help when I truly need it.

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About bunnika

shout at the brick wall; if it doesn't hear you, shout louder
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2 Responses to A New Reality: My Life as I Lose Mobility

  1. Shelley Towns says:

    You are such a great writer. It is crazy all of the steps that you don’t even think about when you don’t have problems with mobility…it’s just natural. Then when you do, the grief and pain of small tasks can be too hard to handle. Have you looked into the rights you have being disabled?? There’s a great resource out there called http://www.disabilitydenials.com/ that might help! Thinking of you.

    • bunnika says:

      Thank you. This is definitely an eye-opening experience for me, and I’ve still got a lot to learn. It’s giving me a greater appreciation for the mobility I still have left, and hopefully I can keep these lessons close to heart if I do end up regaining greater use of my knees.

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