Stigma and “disabled” words

Today we have a special guest blogger. Jothy Rosenberg is one of my favorite people on the planet. A few years ago, I edited his memoir, Who Says I Can’t, which is about his surviving and thriving after cancer caused his leg to be amputated. Jothy has since become a campaigner for people with disabilities and is now working on a documentary, called Who Says Roseann Can’t Run, which will show the journey of a woman, whose leg had to be amputated after the Boston bombing, as she learns to run again with her prosthetic leg.

Jothy has started a Kickstarter funding project for the film. Please consider supporting this film by donating here: http://www.kickstarter.com/projects/whosaysicant/who-says-roseann-cant-run-a-new-documentary

Take it away, Jothy.

I am guest posting here on Erin’s blog about grammar. Erin is about much more than grammar; grammar is just a hobby for her. She is all about telling a great story. That is why I keep wanting Erin to edit things I write. But she is right, grammar is a means to that end. In between grammar—the mechanical aspects of language and writing—and great storytelling is deeper, sometimes hidden, meaning in the words we use to tell a story.

I have been an amputee for forty years, and a lot has changed in how we express my “situation” in those many years. Back in the day, as they like to say now, here in this country, and unfortunately still today in many countries, having a difference about you physically or mentally meant being ostracized and shunned. Way, way back in early human civilization, this made some sense either because it meant you could not help the tribe obtain food and defend itself, or because it meant you had a genetic defect that should not be passed on to future generations. But we are supposed to be more evolved than either of these reasons now, so even forty years ago, it should have not been so difficult for a sixteen year old who’d lost his leg to get through a day of high school.

For many years, in spite of either being on crutches or walking on a pretty primitive prosthetic leg, I refused to get a handicapped car placard because I did not want to be associated with that word. I also would have nothing to do with “support groups” of others who had lost a limb because I did not want to be associated with “those people.” I wanted to be “normal.” Of course, that’s ludicrous. There is no normal and certainly not for someone who goes from having two legs to suddenly having one; a new normal slowly emerges that that person gets to—no, has to—shape.

I also had a lot of trouble with the word “disabled.” Think about that word. The prefix “dis-” means “not” or “negation” so “dis-abled” means “not abled.” That is pretty harsh. And if you knew me as the double-black-diamond skier, swimmer from Alcatraz, and century bike rider all with one leg and one lung, you would be hard-pressed to say I was “not abled.” I am not alone. Would you say Oscar Pistorius (murder allegations aside), who got admitted into the “able-bodied” Olympics, was not abled? We do know better now. And to strike back, in my view misguidedly, many who have a physical change to their bodies rebel vehemently against this word and instead make up new words like “differently-abled,” as if they are able to bend spoons like they are someone out of X-Men. I admit, it took me about twenty-five years to finally relax about all of this and stop caring about these semantics, so I understand those who are fresh and whose sensibilities are still quite raw do not want labels. But it’s important not to become like PETA either: no matter how great your cause, if you become too militant about anything, you alienate the rest of the world and lose the chance to further your cause.

I now have the pleasure of working with Roseann Sdoia, an amputee who became so when the second bomb at the Boston Marathon went off right next to her and so badly damaged her right leg that she had to have it amputated above the knee. She also got shrapnel damage to her left leg (which is still working okay) and both her eardrums were blown out. She was saved by a Boston fire fighter, who got her quickly into an ambulance and held her hand all the way to the hospital. It’s cool, and kind of cute, that they are now a very devoted couple. When someone recently called out when Roseann was going down the sidewalk, “Clear a path. A handicapped person is coming through,” her boyfriend, not even missing a beat, said, “She’s not handicapped, she’s hand-capable.” Because this is all very fresh with Roseann, and her self-esteem has taken as huge a beating as her body, this statement by her boyfriend was not just helpful, it was essential. She needs to hear that, and the rest of us need to be sensitive to her need to hear that. Perhaps in twenty-five years she, too, will relax about these semantics, but in the meantime, sensitivity should be something we can all learn in the words we use. After all, you two-leggers, we one-leggers just have to stick together.

If you would like to support a new documentary being filmed about Roseann’s journey from barely surviving last April’s horrific bombing at the Boston Marathon to running again, please consider supporting our Kickstarter campaign at: http://www.kickstarter.com/projects/whosaysicant/who-says-roseann-cant-run-a-new-documentary

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