Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Tuesday, April 24, 2007

Back by Popular Demand

Seems I'm becoming quite the public speaker. Today and yesterday, I spoke to first-year medical students at the University of Pennsylvania School of Medicine, as part of their "Doctoring" course. The picture to the right is of me outside my house, just before leaving for one of the classes. The goal of the sessions was to help the students learn about treating patients with disabilities.

Though I would have been happy to answer any medical questions, I was glad that the discussion focused on what my day-to-day life is like instead of on the specifics of my disease because, as I told the students, people like me don't exist in a vacuum. I talked about some of my bad experiences with doctors, and also my positive experiences, which far outweigh the negative ones. And fittingly enough, the topic of people being uncomfortable around those with disabilities came up, which I had just addressed in my previous blog entry. I told the students not to worry so much about saying the right thing. Certainly, it is important to make one's best effort to address patients with disabilities properly, but at the end of the day, I can forgive mistakes like that if the doctor demonstrates to me that he or she really cares.

It was with a heavy heart that I spoke to students today, having first attended the funeral of my friend Eric, who had Duchenne's. Although we had not been close for many years, he was my first friend with the disease. We were the same age and first met almost 20 years ago, when we were both just becoming wheelchair-dependent. I thought it was so cool to know someone else going through the same things that I was.

I used to be able to tell myself that it wasn't going to happen to me (even though I knew the reality), but after losing four people I have known to this disease, it's not so easy to convince myself of that any more. Even so, I'm still here and I owe it to the guys who aren't to do something constructive with whatever time I do have. My book is not just for me, but for them as well. And every time I shout obscenities at the TV when the Phillies are losing for a change, it's for them, too!

Saturday, April 14, 2007

A Word About Political Correctness

In the aftermath of Don Imus' firing over offensive comments made regarding the Rutgers University women's basketball team, I have heard a number of people decry the radio host's dismissal as an example of the overly heightened atmosphere of political correctness that exists in our society. While it has become fashionable to criticize the concept of political correctness, I think that's a bit extreme.

People should always consider how the way they describe others affects them. If you're one of those people who asks, "How am I supposed to know what is offensive?" use some common sense.

That said, when it comes to disability (a topic on which I am obviously qualified to speak), I must say that some of the conventions of political correctness are a bit overdone. Even I don't follow some of them, so I really don't care much if others don't follow them.

For example, you're not supposed to call someone a "disabled person," but a "person with a disability." The logic, which is certainly understandable, is that you should focus on the person first, not his or her disability. Trust me, people will adopt such language, but they will still have no idea how to act around a person like me. I'd much rather have people treat me well than merely use the right language when they refer to me. It is well known that people are uncomfortable interacting with people like me to begin with. If I sit there and get so particular about what words people use to describe me, how is that going to make them feel any more comfortable?

At the same time, it's understandable why it's not nice to refer to someone as "wheelchair-bound" ("in a wheelchair" is appropriate). It has recently come to my attention that I should be referring to my muscular dystrophy as a "disorder," not a "disease." I'm not sure how I feel about that one. The idea behind it is that muscular dystrophy is definitely not a "virus" that makes a person "sick," which is what the word, "disease" implies. But I don't particularly like the word, "disorder" either. In my own writing, when I use the word "disease," it has no meaning to me. I'm simply using it as a point of reference in conveying my thoughts. That argument obviously doesn't fly when it comes to describing a person's race, religion, etc., but I'm only talking about political correctness as it pertains to disability.

I'm sure that there is no shortage of opinions out there on this subject, so let's hear them...