Imagine this: tomorrow you go to get out of bed and you cannot sit up without help. You need assistance to dress yourself, use the bathroom, and even get into a wheelchair. You require help eating because you cannot lift your hand to your mouth. You cannot hop in a car and drive off to work or school. You must find other ways to get around. You might require a ventilator to help you breathe or rely on multiple medications to handle the pain you endure just to sit up in your wheelchair every day. You require assistance with activities of daily living but your mind is still as sharp as a tack.
Tomorrow, this could be you. Muscular Dystrophy can strike anyone of any race, gender, age, sexuality, cultural background or religion/lack thereof at any time. You could get in an accident that leaves you paralyzed from the neck down, waist down, head down. Multiple sclerosis, cancer, lupus or some other debilitating disease could become a part of your daily life. Anything could happen.
What do those of us who live this life every day do? We live our lives and find alternative ways to do simple tasks. We reach for the moon, stars and sky. We fall in love, have families, make films, act, sing, dance, participate in sports, have jobs, homes, and lives. We get past our difficulties, but we NEVER forget our struggle. We must live with it day in and day out. We not only know the struggle to live, survive and thrive but we also know what it is like to be oppressed on a daily basis.
We are oppressed by the store clerk who feels sorry for the poor cripple. It’s such a shame that someone “so young” would be in a wheelchair. I’ve heard this since I was born with a limp and a muscle disease. Poor little Dominick – what a cutie but such a shame he will never be able to “function” like the rest of us.
We feel the sting of our peers who treat us with indifference. Let’s include the entire class in group activities BUT you. You’re cripple. You cannot get in our house anyway, so why even bother inviting you? You probably stayed home from prom, homecoming or even the birthday party of your “friends” because it was just easier to keep you from socializing with the ABs (able-bodied folks) who can navigate steps. We know they may just be ignorant and think they’re doing you a favor but the exclusion hurts. Even if we cannot come, the invitation is much appreciated. It means you want to include us, but don’t know how.
We know tomorrow you could be in a wheelchair, too but unless you already are in one, we struggle to find ways to make you understand how rejections sting. We fret and often keep our mouths shut knowing you are oblivious to the pain we endure. For me, this means I pour all my heart, soul and pain into making a beautiful film and it always turns out so much better due to the inner angst – angst only those of us with disabilities understand.
You have no idea I am a fighter. I’ve fought to live – almost dying at one point. I’ve fought to live in my community – nursing homes are common homes for many young people in my position. I’ve fought to find someone to love and accept me for who I am. She is beautiful, wonderful and my best friend. I have fought to be treated like a human being. I am still fighting for that. Every day I must and every day I hurt, at some point, simply because someone has treated me as less than human.
In spite of my disability, I make films. I filmed a web series. I am a trained singer with a beautiful voice. I have acted in films on stage, been on television, sang on the radio, rode roller coasters, had sex, had fights, felt pain, felt love, cooked meals, popped wheelies, danced in the rain, danced on the dance floor, drank alcohol, cruised for “chicks” with my dad, rode in a thunderbird, went to baseball games, hockey games, football games, played wheelchair football, kissed a girl, washed my dog, kissed a boy and felt nothing from it (to each their own!), had a water fight, rode Harleys, kicked ass at video games, got a standing ovation at karaoke, had one of the leads in my high school musical, went to the movies, went to New York, Los Angeles, Canada, Reno, Florida, Walt Disney World, Cedar Point. I’ve done so many things because my disability may be a part of me but it does not DEFINE ME. It does not DICTATE what I want to do, what I can do, or what I should do.
Tomorrow it may be you, wanting me to help you navigate through a new, strange, world of disability, but today I am alone, surviving on my own. I will survive, I will thrive, and when you need me, I may not be there to guide you. So maybe you need to reach out today, while the anchor is there, allowing you to step into my world, a world that could one day become your own.