Wednesday, May 30, 2012

Labels (not the kind on soup cans)

imagesLabels- short phrases that summarize the characteristics of a person or group- get a bad rap. I'm here to defend them.

"Don't put a label on me" is a common appeal. I get that. Yet, wouldn't communication become excessively cumbersome if we didn't employ these linguistic shortcuts? To bastardize a phrase used by the National Rifle Association- “Labels don't stereotype people. People stereotype people.”

We need labels; we just need to use them responsibly.

Some labels are spot on. Here’s an example from my life. Lots of people with MS are frustrated by the various labels such as Relapsing Remitting MS (RRMS), Primary Progressive MS (PPMS), and Secondary Progressive MS (SPMS). Some patients, like my friend the Wheelchair Kamikaze, even wonder if the MS label applies to them at all. Many people have several characteristics of one or more category, and therefore don't have a good answer to the question, "What type of MS do you have?" This can be an important distinction, as it affects treatment options and insurance coverage. But in my case, I couldn't be a more classic PPMS than I am. I am male. My lesion load is primarily in my cervical spine. My disease initially presented with weakness in my legs. I've never experienced anything resembling a relapse or a remission. There's no question in my mind that I have MS, and that I have PPMS. Good label.

In contrast, it's almost impossible to label my politics. I'm not a registered Democrat or Republican. I'm a fiscal conservative, like a Republican. But I am a social liberal, like a Democrat. I believe in broad individual rights, like a Libertarian. You just can't stick an accurate label on me.

In the wheelchair world, there exists a set of common labels. Many people are in wheelchairs because of spinal cord injuries. They are referred to either as paraplegics, with full or partial paralysis in their legs, or quadriplegics, with full or partial paralysis in all four limbs.

I didn't suffer a spinal cord injury, but I have a disease that mimics one. Therefore, I think it's appropriate to label me as either a paraplegic or quadriplegic. For the first six or seven years of my disease, I think I was clearly a paraplegic, at worse. Only my legs were affected. Somewhere along the line, though, I started to develop disability in my hands and arms. I don't think it was appropriate to classify myself as a quadriplegic the first time I had difficulty shuffling a deck of cards. However, I feel like it's appropriate now.

But, do I legitimately qualify for the quadriplegic label, which is usually reserved for people with spinal cord injuries? I think so. Therefore, if the spinal cord injury population has no objection, I'd like to use that label to economize on the number of words I have to employ in order to describe the extent of my disability.

Having made this point, however, I think my response to the question "Why are you in a wheelchair?" will remain "Because I have MS." But if I am ever asked the question "Are you a paraplegic or a quadriplegic?" I think I'll respond. “I’m a quad, thanks for asking.”

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