My Job Is

I tell this story all the time, although I haven’t in a while. I was already in school so I had to be five or six years old. My mom was doing something in the kitchen and I was sitting on the step that used to divide the kitchen and the dining room at my parent’s house trying to tie my own shoes. I was just a kid, I must have tried for fifteen or twenty minutes but in my mind it felt forever. I eventually got frustrated and started crying, when my mom came over, I exclaimed, “why me?!” Meaning why did I have to be the one born with cerebral palsy? She didn’t skip a beat before replying, “because you’re strong enough to handle it”.

Twenty five plus years later, I still can’t tie my own shoes. Somewhere along the way I realized I didn’t have to. I just had to buy shoes I didn’t have to tie. That’s the only thing I consider myself to be truly good at — finding alternative ways to get things done. Can’t hold a cup to drink out of? Drink through a straw. Can’t button your own jeans? Buy them a size too big where I can just slip them on and wear a built instead. Have a business in IT and can’t perform some of the most physically intensive tasks? Make enough money to be able to hire an assistant to help you out.

When I first started working with Kern Assistive Technology Center and was there almost daily, Lourdes and I developed our friendship. One day we were talking about my dating life and the obstacles it takes for women to look past my disability. She said something so apt it stuck with me, “no, you will never be able to build a woman a house with your bare hands but you’re smart enough to make enough money to pay someone to build that house for you”. It’s a simple concept but quite apt.

To me, that has always been my job. Finding alternative ways to get the results.

It always kinda frustrates me when people label me an inspiration for doing things that a normal thirty one year old man is supposed to do like working. I sincerely don’t understand what people expect me to do with my life. Sit back for fifty plus years, collect a social security check and watch Netflix all day everyday? Live with my dad all my life? As simple as it sounds, I like spending money too much. I like going out on dates and dropping a couple hundred. I like having my own place and paying my own bills. I like not having to answer to anybody where or what I spend my money on.

I read an article in The Guardian just yesterday about this woman in the United Kingdom with cerebral palsy being held up as an inspiration because she landed a job after two years of searching and never gave up. I understand the “fluff” sentiment but I guess I’m not seeing the alternative. That’d be like the solution of me not being able to tie my own shoes is not to wear shoes.