The "C" Word

by Dean Kramer
January, 2007

There was a wonderful Southpark episode in which two disabled boys, tired of being picked on and mocked, think their problems are solved when they discover there’s a gang called The Crips. They determine to join up and empower themselves.

I recently consulted a publishing professional who told me I’d be more successful as a writer but for the title of my book (and, I suppose, my column). It was suggested that I might contact potential publishers and, in effect, apologize for using the word cripple. It was further suggested that I might even stop using it or at least admit that it was a poor choice to begin with. I was told that if I did those things perhaps I’d have more opportunity to share my work because, after all, I have such a wonderful way of using humor to cope with MS.

“B-b-b-b-but…” I sputtered inside, “The title is INDICATIVE of that wonderful sense of humor.” And what about the adage: you can’t judge a book by its cover?  What about the fact that many people with MS do become disabled after 20 years or so?

Following that conversation, I actually considered the suggestions offered. I tried to picture myself writing apologetic letters or hanging my head in shame as I spoke with some magazine editor or other about my foolishly mistaken book title. But I finally came to my senses. I may have differently-abled my chances for success, but I gotta be me.

For many African Americans the  “N” word, used among friends, is a non-offensive term of endearment.  Many gay women have embraced the  “L” word and use it proudly. Among the physically disabled, the words crip and gimp are used both affectionately and with matter-of-fact pride. People can empower themselves with language or allow it to frighten and disempower them.

In the days before current advances in treatment, adaptive technology, and the acceptance of diversity, disabled (or, to use a more archaic word, crippled) people were often excluded from participation in everyday life. Since the passage of the Americans with Disabilities Act we are more of a presence in our communities.

MS is not a disability. It’s a disease that can result in disability. The current press on MS is that, with the therapies available today, disability need not happen. For many of us, though, it still occurs. While people with MS, like others with disabilities, are welcomed out of the closet, or attic, into full participation, there is a subtle expectation to do everything necessary, at all times, to protect both ourselves and others from the possibility that our disease will progress and disable (or, synonymously, cripple) us.

Unlike those with a static disability who are what they are, pressure is put on people with MS to be well. At the most superficial, in the early, relapsing/remitting years, we’re reminded that since we don’t look sick we mustn’t have anything seriously wrong with us. We’re offered expensive therapies whose manufacturers provide spokespersons with no visible signs of a serious disease. Once we begin experiencing disability, as many of us eventually do, we are cautioned against feeling sorry for ourselves or allowing diminished abilities to become a central fact of our lives. We’re hustled quickly past that realization, told to focus on all we have left, jollied out of any grief we may feel, yet warned to take the disease seriously.

I do all I can to keep myself as well as possible. I don’t know anyone with MS who doesn’t. I’ve written about my pursuit of well being through exercise, diet, supplements, yoga and meditation. I take medication specifically for MS. And even with all that, after 23 years the disease has disabled (or, if you will, crippled) me.

I’ve had to become self-accepting enough to admit I need adaptive technology. It allows me to participate fully in everyday life so that MS doesn’t stop me from doing things I really want to do. I’d rather go places using a wheelchair than go without one and have less fun, be less fun to be with or, worse, stay home. But I learned about adapting and compensating from others like myself. I learned from other cripples, not from the agencies and corporations surrounding the MS community. I’ve had to work at valuing myself exactly as I am rather than feel diminished because I haven’t lived up to a pharmaceutical company’s fondest dream.

And I’m not afraid of the “C” word.

The “C” word puts me in direct contact with a community of people who walk exactly like I don’t anymore. Among those people I can grieve, joke, and find inspiration and support. Together, recognizing a mutual reality, we can help bring about the changes that allow us fuller participation in the world. In an odd way (bear with me here) though originally used to defuse stigma, the word “disabled” has become the word The Man uses to describe us. It’s an institutional word and, to some extent, an outsider’s word. The “C” word is one of our words—a word reclaimed and rehabilitated. It’s an insider’s word used with affection and pride.

Of course, not everyone with MS will become disabled. No one chooses disability. But sometimes disability chooses us. And if it happens to you, as it has to me, you will first have to acknowledge it. Then, you’ll likely be sad and angry for a while. Take the time needed to grieve. But don’t be afraid or (if you have a computer) alone. You can learn from a community of caring, active people rolling the road of happy destiny. We’re there if you need us. Life on Disabled Creek— I don’t think so!