How We Feel About Disability and What We Say About It

How We Feel About Disability and What We Say About It

Words matter, particularly when you’re talking about yourself.

How We Feel About Disability and What We Say About It
Andrey Popov/iStock

As those who read Life With Multiple Sclerosis regularly know, I’ve been rehabbing from a series of falls that occurred over the Christmas holidays. I’m on a good trajectory for recovery, but my change in mobility devices has brought new attention to my disabilities.

To take some strain off my injuries, my physiotherapist prescribed using a forearm crutch on my left (most affected) side. I usually support that side by using a stick or cane in my right hand. Using a crutch on the weak side, to relieve the injury, then leaves my “MS side” compromised.

That means two crutches for me for a few weeks. No hiding my disability with a fashionable cane for now. …

‘I Fell’ vs. ‘I Had a Fall’

This change in appearance has been cause for both questions and comments. People in our town — even friends — don’t see me out and about much unless I’m having a relatively good day. With my crutches, I look a bit like a Star Wars AT-AT Walker.

In one conversation, I mentioned that I had had a series of falls to someone. Well, the reply I got!

“You didn’t have a fall. You fell,” she insisted. “Falls are what happen to old people.”

I responded that “falls” also happen to people with disabilities like mine, and I more than just “fell.”

A friendly (on my side) yet heated (on hers) conversation ensued. What I came to understand was that she had fallen, or tripped, or stumbled a few times in the past year and quite emphatically did not want to be considered old enough to “have falls.” Her insistence had nothing to do with my condition. This was a battle with her own situation, not mine.

And isn’t it so often the case?

Other People’s Fears Get Projected Onto Us

Beyond the “Oh, I get tired too” comments, I find that people engage their own fears of being “less than” when they talk about my condition. I suspect that, if you review any particularly pointed conversations you’ve had with others about your MS, you may find the same.

While some of it is genuine encouragement, more often it can be a proxy battle of the soul.

Whether I say I “fell” or “had a fall” is of no real consequence to my friend. That she had her tumbles described to her in a manner that she associated with age and disability was the crux of that chat.

A similar thing could be said when we hear, “Oh, you’ll be grand,” “Sure, come to the party and see how you feel later,” and “I think it’s all in their head.” There is a genuine fear that what has happened to us might just happen to them.

I Live My Own Truth, Whether You Like It or Not

Well, I’m not an emotional support animal for people who aren’t comfortable with my condition because they’re not comfortable in their own skin.

I own the facts, the consequences, and it would seem, the language of my disease. By speaking my truth in words that reflect my experience, I take ownership of the bad parts, which allows me to embrace the good as well. I’ve been through those fights with myself; I don’t need to revisit them again for the benefit of someone who isn’t on my side of these battle lines.

My name is Trevis, and I live with multiple sclerosis. I have good days and bad days. I have abilities, and I have disabilities. And sometimes, no matter how uncomfortable others may find it, I have a fall.

Wishing you and your family the best of health.

Cheers,

Trevis

Important: The views and opinions expressed in this article are those of the author and not Everyday Health.

Trevis Gleason

Author

Trevis L. Gleason is an award-winning chef, writer, consultant, and instructor who was diagnosed with secondary progressive multiple sclerosis in 2001. He is an active volunteer and ambassador for the National Multiple Sclerosis Society and speaks to groups, both large and small, about living life fully with or without a chronic illness. He writes for a number of MS organizations, like The Multiple Sclerosis Society of Ireland, and has been published in The Irish Times, Irish Examiner, Irish Independent, The Lancet, and The New England Journal of Medicine.

His memoir, Chef Interrupted, won the Prestige Award of the International Jury at the Gourmand International World Cookbook Awards, and his book, Dingle Dinners, represented Ireland in the 2018 World Cookbook Awards. Apart from being an ambassador MS Ireland and the Blas na hÉireann Irish Food Awards, Gleason is a former U.S. Coast Guard navigator. Gleason lives in Seattle, Washington and County Kerry, Ireland with his wife, Caryn, and their two wheaten terriers, Sadie and Maggie.