I spent the first ten years of my life trying not to die, then the next ten years trying to want to live; in the last three, my life has just begun. For the good, and the bad, my life has been filled with unique experiences which few could begin to understand. You see, I was born with a unique trait: Arthrogryposis, Muscular Dystrophy.
Muscular Dystrophy, or MD, is an umbrella term for a group of genetic diseases which can cause any number of lifelong struggles: muscle weakness and learning disabilities to name a few. In a strange, convoluted sort of way, I was blessed to only have the first on that list. Despite living in constant pain and with the looming dread of one final pneumonia, I have been given a special opportunity to provide the world with a new perspective- a cunning cripple who won’t take “no” for an answer.
HANDICAPPED PEOPLE ARE HERE TO STAY, AND WE’RE SICK OF BEING PITIED.
In the last three years, I’ve taken my life seriously. I’m engaged to the love of my life, doing well in school, have a career path, and a life goal. My role on this earth is to enact change, and to affect as many people as possible with my message. The message is simple, “Handicapped people are here to stay, and we’re sick of being pitied.” Now, while a vision is all well and good, it’s nothing if you can’t get it out there.
I could tell you a harrowing tale about my participation in the NCC speech contest, and how it was a life-changing adventure that touched hearts and minds, and how it helped me overcome my stage fright. In truth, my professor told the class that if we made it to the finals, we would be given an automatic “A” on our final exam. Winning the contest was just the cherry on top of it all. During my final revisions of the speech, though, a single phrase found its way into my conclusion; it’s also the title of this piece.
‘Ask, don’t assume,’ is the neatly-wrapped version of my long-winded speech. For too long, handicapped people have been a cohort viewed as economically worthless, pitiful, and only useful for ‘inspiration porn’ to help normal people feel like they do enough to help. Realistically, things on our end are in dire need of change. We are passed over for jobs while well qualified, we aren’t spoken to in restaurants or stores, and our benefits hold us back from making lives for ourselves. The first step in changing this is to break the barrier between you and I. So, I encourage you all to ask questions, be curious, and never be complacent.
QUESTIONS I’M ALWAYS ASKED
Q: What do you have?
A: I have a form of Muscular Dystrophy (MD) called Arthrogryposis, which primarily causes muscle weakness and joint stiffness.
Q: Do you mind answering questions about your disability?
A: Not at all! I would even take the risk to represent most handicapped people in saying that we would much rather you ask.
Q: How long will you live for?
A: Thankfully, my disability is not degenerative and so my lifespan is not heavily affected. However, I’m more susceptible to threatening diseases.
Q: Do you have any learning disabilities?
A: Nope! While those with MD are more likely to have ADD, ADHD, and other neurological problems, I do not.
Q: What has been your biggest challenge?
A: Physically, my breathing has gotten worse over time as a history of pneumonias can create scar tissue in the lungs.
A: Socially, I have not been taken seriously for most of my life. Normal folks treat me in one, or all, of three ways: pity, fully ignoring, or as an inspiration.
Q: Isn’t it good to be inspiring?
A: Well, of course! But, most times when we inspire people, nothing becomes of it. If everyone who has ever been inspired did an hour of community service a month, the world would be a very different place.
Q: What can I do to help you?
A: The easiest thing to do is to treat people like me exactly as you would treat anyone else, while keeping our disabilities in mind. Make friends, dispel rumors, and volunteer at the MDA.
Q: Do you have Turbo/spinners on that thing?
A: No, I don’t. And please don’t ever ask anyone this. We have heard it before and most of us consider it infantilizing to our disability. It is not a good way to make light of a problem.