Maybe today is not the day to write this article. I am angry, very angry. It's a rather unusual state for me as I firmly believe that volatile emotions can be fleeting experiences and I try not to get caught up in them as a permanent mental state. So why the anger? Why now? I am now a wheelchair user and the reality of that has begun to hit me like a sledgehammer. Perhaps it's self-pity, perhaps it’s a lack of strength, but with winters arrival I am finding myself in a panic. I never gave much thought to how different the winter experience is for a wheelchair user and holy crap I am scared.
Two days of rainy cold and blustery days have driven home the point that I will be like a prisoner when the deep snow of winter falls. I do not have a vehicle that is easily accessible. I take my chair apart and put its pieces into the passenger seat, in the rain I am all but drenched in the process. This also means that I sit in a saturated chair for hours till it dries. All things I never considered when I was able-bodied. When you add the freezing temperatures of winter and how I am going to push my chair in the snow into all of that, it’s more than a challenge than I maybe up for and that truly frightens me.
There was this ridiculous albeit beautifully shot picture of Kylie Jenner using a wheelchair as a prop. Was the point to say she has been “crippled” by her fame and just an empty shell as her vacant stare would imply? As she hopped her lovely self out of the chair and walked away on her stilettos, did anyone tell her that using someone “legs” was in bad form? Could she and her media team not have foreseen how offensive, at least it was to me, her manikin pose in a wheelchair might offend people. How is a wheelchair a social commentary or an art form? I struggle every day not to feel broken by this limitation in my life and they used it for sell magazines.
I struggle to: dress, shop, make food, clean the house, and engage in any sort of social functions. I deal with loss after loss whether it is being unable to visit friends because I can’t get in their house never mind their bathrooms, to not being able to attend my beautiful niece's birthday because the facility doesn’t have to comply with ADA standards…and Jenner used a wheelchair as a prop. To be honest I am not sure why this has me so angry, perhaps it's the frivolousness of her sexualized pose in my prison. I generally don't feel like my chair is my prison because I know it gave me back some of the freedoms my disease has stole from me, but today and maybe for the entire winter season I will be thinking of my chair and the disease that put me there as my jailers. Jenner’s cover is callus in the least and exploitive in the worst.
I FULLY know now that heroic people with disabilities have blazed so many trails for my family and me. The ramps into many buildings, the changes to educational rights of the disabled student, accessible bathrooms, and accommodations in the workplace are just to name a few. But I also know that in spite of all the hurdles overcome, we have so far to go. It has taken years and years of hard work on behalf of some intrepid souls to actually have a person in a wheelchair included in ads, on television shows and most recently in a Broadway show. We are not as invisible as we once were in mainstream media. To those who think what’s the big deal, it’s just a model in a wheelchair? I say, why not use a real wheelchair user as a model? I say, she actually doesn’t use a wheelchair and to use it as a prop is insulting and demeaning in her portrayal of one. I say that your prop is my freedom, my prison, and my jailer.
I will say thank you for one thing; her cover gave me the opportunity to figure out why I was so angry. I am not a vacant shell of a human being because I reside in a body that doesn’t function well. I am not a broken person because I need adaptation. I am not invisible or a freak that needs to be stared at sideways as I roll by. I am not forgettable because I am a little more work to include. What I am is scared and afraid of being left behind, of having my spirit broken from isolation and loneliness. What I am is a person who is searching for meaning from this new chapter in my life, for my place in the world and to know that I still have value. I guess Ms. Jenner’s cover did provoke a reaction as all good art is apt to do, but for me the provocation came from the actually fear of living a vacuous life. Perhaps I saw reflected in her eyes my own fear.
Winter’s coming, and I need a plan.
