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Comments and Jokes About SMA: How I Handle It

Written by Bryce Parks
Posted on December 16, 2021

Sometimes the words people choose can make a difference in the overall impact of a conversation. Using terminology about people with disabilities is often seen as treading on thin ice, but context clues and “reading the room” are key ways to judge success of the phrasing.

Jokes Are Jokes

As someone who is living with spinal muscular atrophy (SMA), I recognize some people in the disabled community are thick-skinned and others are more sensitive. Regardless of where they fall on that spectrum, there always comes a point when their disability comes up in a conversation. Sometimes it's a clearly well-intentioned question or innocent comment and sometimes it's in the form of a joke that’s more difficult to read. In my experience, the aftertaste of the speaker’s word choice and the context are crucial to understanding their intention.

Generally speaking, anyone willing to joke with you is someone who feels comfortable and confident enough to take a chance. Viewed through an optimistic lens, a person attempting a joke or humorous comment shows they feel a level of friendship with you.

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Even in scenarios where the joke just misses all together, I never feel a need to make a scene about it. Why would I cause a ruckus if a joke happens to apply to me? Most jokes apply to someone either in an abstract way or directly, and I see no reason to dwell on it.

Exposure Helps All Around

Some people naturally take offense to certain situations because of uncomfortable circumstances. Being jokingly called “the guy in a wheelchair” may upset someone unaccustomed to such direct language about themselves. This unfamiliarity may lead them to interpret that joke as offensive.

Everyone is different, though. I learned that it would be repetitive to tell every person in my life that I feel a certain way about comments related to disability over the years. At some point, talking about disabilities becomes integrated into everyday conversation without even a thought. On top of it all, freedom of speech exists, and I have no grounds for telling people how to speak.

Of course, sensitive subjects deserve a mention, but how often do people touch those topics? Especially friends who know and understand what affects you the most in life. From high school through college, I’ve found that being able to adapt to different people makes these occasionally awkward conversations a bit easier.

Moreover, reading about disabilities online or watching some videos has helped get me more accustomed to just hearing words that might normally be a little off. There are millions of YouTube creators, podcasters, and livestreamers who include discussions about disabilities in their content. Finding a creator that you enjoy is a good step toward developing a tree of connections worth paying attention to.

It’s OK To Escape

Sometimes people make offensive comments, and those have to be dealt with properly. Some people just need a simple nudge in the right direction, but others are unable to understand how much of an impact their words have. If that is the case, changing the subject always provides an easy escape from an uncomfortable moment in a conversation.

As funny as it may sound, the sooner one can accept that people are naturally going to joke or comment about disabilities, the easier it will be. As I see it, at the end of the day, you shouldn’t worry too much about the specific terms people use. Being logical and fair, yet grounded and ready to stand up for myself, makes these situations much less of a concern in my daily life.

Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.

Posted on December 16, 2021
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Bryce Parks has SMA type 2. He hopes to make a difference to people through a variety of creative forms. Learn more about him here.

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