Finding the Right Words

Like many college students, I struggled to decide what occupation or course of study to pursue. After a few months, I decided I wanted to become a speech-language pathologist. One of my professors, Dr. Mark Ylvisaker, taught me a definition of language I still use in my own presentations and writing. According to Dr. Ylvisaker, language is a shared symbolic code used by members of a group to express shared beliefs, ideas and values.

You can learn a great deal about a group by observing language. This week I was reminded how many people use negative language about disability rather than just saying the word “disabled.” Negative language just proves what we disabled people already know – nondisabled people don’t have a positive view of disability. (Side note, if you haven’t heard of the #SayTheWord campaign started by Lawrence Carter-Long, go do your research after you finish this post.)

What do I mean by negative language? I mean the back-handed compliment someone tried to give me by saying, “You’re so much more advanced than others who are dealing with your affliction.” It’s the stranger at the pharmacy who watched me wheel past a display and said, “Look at you handling that so well!” Or the person on Zoom who said, “You don’t even look handicapped Denise!” While all three of these caused my teeth to grind, I’d like to focus on that first example for this post.

That first sentence was said during a phone call with someone, whom I’ll call Helen, I had considered as a potential health provider. In the moment of conversation, I knew I would have to do some education if I were to continue with Helen. I have no problem educating others about disability positive language. I routinely perform this education when I go see my neurologist, who is based at a teaching hospital and has students accompanying him. However, when I am seeking help for myself, I don’t want to have to be the educator for the person I am looking to for assistance. I needed Helen to see my life as valuable, and her stating I had an affliction, which is defined as something that causes pain or suffering, did not set the right tone for me.

If I’m being honest, my disability has given me some privileges in life. Thanks to my disability, and the state of New York, I am eligible for both Medicaid and employer-sponsored health insurance. This means I have not paid out of pocket for hospital stays or medical appointments since 2008. Three surgeries, four hospitalizations, a two week stay at a rehabilitation hospital and countless doctor visits – plus a new wheelchair – at no out of pocket cost to me.

My disability has also provided privilege at other points in my life. I have been able to skip lines at tourist attractions thanks to my wheelchair. I have also been able to bring a companion for free or at a reduced cost sometimes. And who can forget the parking?!

I think most people who use language that may cause me to grind my teeth are just trying to find a common ground. They are afraid to say the wrong thing, at least that is what I tell myself as I try to be patient with myself and with them. After all, I am well-known for opening my own mouth and shoving my foot down my throat.

This is why I am a firm follower of the “oops and ouch” technique. Whenever I say something that doesn’t come out the way I intended, I say, “oops” and explain my intended message. And if I hear something that doesn’t sit well with me or offends me, I say “ouch” and explain why I am having a reaction. This exercise has helped me communicate more effectively with friends, work colleagues and during group presentations. The trick is staying present in the conversation, to apply it when the “oops/ouch” occurs.

I failed to respond immediately to Helen this week when faced with unexpected negative language but I still learned about communicating nonetheless. So, the next time I speak with Helen, or someone who uses language like she did, I can be more prepared to have a meaningful conversation.