Actually Stella, you have inspired me. I know you would hate to read that. You gave me a kick up the butt and made me stop feeling sorry for myself. Not because you are disabled and have achieved incredible things. But because you were a normal person.
You see, I have a disability too. At the age of 20 I was diagnosed with epilepsy. There are a lot of things I can’t physically do due to my epilepsy: drink more than two or three alcoholic beverages in a session; go on certain amusement park rides (which frankly I’m ok with); and after five years of not having a drivers license I am on a restricted license now, but it could be taken away at any moment. Even things like really hot days, long periods of not eating and that impossible to measure until it’s too late factor – stress – are really bad for me too.
But my disability is not a visible condition like the ones we think of in under the term ‘disability’. While technically falling under the physical disability category, my epilepsy has had far more of a psychological hold over my life.
As time went on I started to believe I was not capable of looking after myself. I wondered if I could really cope with a high-intensity job. If my plans of getting pregnant and raising a family were sensible or even achievable. I developed something else: chronic depression which eventually unwound into anxiety. My brain, which I had always valued as my best asset had started to work against me. I was already angry at it for screwing up and developing epilepsy and now it was telling me my life was over.
I started living so carefully that I began to withdraw from life. I stopped trying new things and started talking myself out of planned activities. I doubted I could travel that far on my own. I didn’t know how to drive around that area of town. Interviews sent me into a panic, I thought they would give me an episode. That many responsibilities in the advertised job looked too tricky to juggle in addition to my parenting and home duties so I didn’t bother applying. I didn’t think I could do LIFE anymore. It really was easier to just stay at home where everything was familiar, and where I could feel sorry for myself.
During a very low bout in my depression and a bad time with my epilepsy I was given an inspirational quote. And I laughed. This was written by someone who truly did not understand hardship. I went searching for a better source of inspiration – maybe someone had worded it better. But it really was, as you put it, inspiration porn: the objectification of disabled people to inspire non-disabled people.
And then I found you Stella. You told me that we have been lied to: that disability can be a bad thing. But it’s not. No matter how many times I had told myself in the past that “it could be worse,” I had never believed it. I honestly thought I was at my lowest point. But you showed me where I could go. Not because of your wheelchair, or your body. But because of your articulate words and your system-challenging thoughts.
You’re right; you were not remarkable. You were a journalist, writing and speaking on things you were passionate about: feminism, politics, body issues and yes, disability. But what you were really good at was challenging public perception. Sure, it was confronting to hear these things from a woman in a wheelchair. But you could back up your words. You didn’t care about being politically correct (which is why you were so funny and likeable) and yet you got the facts right. You didn’t care about fitting in and yet your actions had such a uniting force.
You know what you were really good at? Being you.
Stella whenever you spoke or you wrote I thought, I want to do what she’s doing.
I did not think about the medications that clouded my thoughts daily. Or the intense headaches I suffered from. Or the nerves that often led to epileptic episodes I felt when interviewing people. I did not think about the people I might upset along the way or how much of a learning curve I had to embark on before I got where I wanted to be. All I could think about was how unhappy I was with what I was doing with my life. I knew I could do better.
You said, “I don’t want to live in a world where we have such low expectations of disabled people.” Neither do I, Stella.