Wow, where did an entire month go? I’m working on some personal things, and I’m hoping things start to pick up in my planned search for work. I have begun working with the Bureau of Rehabilitation Services (BRS) in my state and developing a plan of employment. I’ve been doing some occupational research to get an idea of precisely what specific jobs entail. Working when you have a disability can be a pretty big challenge but I’m excited to see where it leads. But, I’m still here, more to come!
This is the question almost everyone has on their mind when they meet someone like me for the first time. It’s almost a taboo to wonder how someone ended up with a particular disability, but it’s an obvious and natural thing to be curious about. I only speak for myself when I say that most of the time I don’t mind the question. More often than not when that question, or one like it grates on me it has nothing to do with the question itself but rather how the person has gone about asking.
I personally like when people are curious and are willing to politely try to find out a bit more of what my life is all about. Sometimes I see children who are interested in the fact that I use a wheelchair to get around, and I see their parents react in horror telling their kids not to stare or that it’s rude. I think this is where the fears many people have about disability get started. Obviously I know I have a disability, so people who are curious don’t in some way remind me that I’m disabled (as if I could forget). If someone asks me nicely and I’m not clearly busy or on my way somewhere, I’ll usually share a bit. Anything I can do to show people that I’m just like them aside from my physical issues helps increase overall awareness and maybe lessens some of that awkwardness some have around people with disabilities.
So what did happen to me?
I have a genetic condition that is somewhat known due to highly public fundraising efforts. I have muscular dystrophy, those who are more familiar with it often ask me what type. There are dozens of muscle diseases, nine of which are considered muscular dystrophies, but two types of muscular dystrophy are caused by a similar genetic defect. Those two types are Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD). Both conditions result in progressive weakness of skeletal and other muscles beginning from mid-childhood. The mechanism of disease is either a deficiency in the body’s production of the dystrophin protein, or a complete lack of that protein’s production. Dystrophin is a protein that helps maintain the strength of muscle fibers and protect them against damage. I’ve been diagnosed with both of them at varying points of my life. DMD and BMD are similar but BMD typically has a slower and less predictable progression. My personal experience with muscular dystrophy has led me to believe I’m in a slower progression but the ultimate effect is that I am now completely reliant on a power wheelchair.
The follow-up question that many people ask me is “how do you deal with it?” That’s something I hope to answer as I expand upon and share more of my experiences publicly. I also plan to write about some of the amazing medical research that has been going on for the last few decades. Scientists are tantalizingly close to some world changing advances that will directly affect people like me. Stay tuned, there’s plenty to learn!
It’s finally time to provide some context for this blog. “The world as seen on wheels” is a fun little tagline for my website, but it’s much more to me than a simple turn of phrase.
Wheels represent the reality of my day-to-day life in a way that the average automobile commuter or bicyclist could never understand. I say this not to put me apart from everyone else but to illustrate the radically different and somewhat unique perspective my situation imposes on me.
I am one of the roughly 1.6 million Americans not residing in health care facilities who rely on a wheelchair for daily mobility. Furthermore I’m in an electric wheelchair, which as of 2002 was an exclusive group consisting of less than 200,000 people, according to the Disability Statistics Center at the University of California San Francisco.
Among the perks of being in this group are a high level of visibility as a person with a disability, high level of functional limitations because of the size and weight of the wheelchair plus the more substantial disability that usually necessitates a power chair, and the lowest level of employment among persons with disabilities.
Now those sound like pretty bleak statistics, but I believe we all have value to society. We all have something to give if we can just find the means to do so. Although I’m currently not employed, I have worked on a full-time basis in the past and I expect to do so again in the near future.
So as you read and follow along with my updates, I hope to highlight the issues and challenges I and people like me face on a daily basis. I’m looking forward to sharing my continuing journey and showing that people with disabilities truly can achieve their dreams.
This is the third time (at least) I have resurrected this blog. In the past I have attempted to define a specific mission or specific subject to focus on. My interests are in politics, science, music, art, culture philosophy etc. etc. I thought focusing on one of those would be a good way to keep it going, but it turns out that restricting yourself to a single topic or area of discussion actually makes it nearly impossible to feel free enough to tackle other subjects.
So here I am once again, more than a year after the previous attempt, giving it another go. It hopefully will turn out better this time but I make no promises to myself or to the world at large. I simply need a platform to talk about what’s on my mind. I have no idea what the goal of any of this is, I would be hesitant to even say there is a goal. So in this space I will write what I feel like writing. If anyone out there likes what I have to say, feel free to contact me or even to join the site and comment.