Let’s end the infantilization of people with disabilities
An important reminder that SMA adults aren’t toddlers
“Hey, buddy, don’t get a speeding ticket!”
“When was his last X-ray?”
“Oh, wow, you work!”
For whatever reason, society loves to infantilize disabled people. It’s practically a hobby for some people, be they medical professionals or middle-aged pedestrians looking to test their comedy skills when they see a wheelchair user cross the street. All of the above quotes are things people have said to me countless times throughout my life.
Infantilizing can mean talking to me as if I were a literal toddler. Forget the beard on my face. They scrunch their faces into cringeworthy smiles and adjust the tone of their voices.
Then there are medical personnel who try to address my parents or caregivers while I’m in the same room. The latter happened to me about a week ago, even after I communicated with this person just moments before.
In some ways, I’ve become so accustomed to this brand of ableism that I often brush aside these comments. Like anything else about living with SMA, it’s part of the package. Plus, I enjoy poking fun at each of these scenarios and imagining all of the other awkward things these people say to others.
On other days, these remarks infuriate me. I leave these encounters feeling dehumanized and humiliated. My physical fatigue is exacerbated. I wonder if the people who utter these remarks will ever realize the level of harm they’re doing. They think they’re being nice or even funny when in reality they’re making it clear that they think we should be viewed differently than a nondisabled person.
Ignorance is not OK
Every comment and unwarranted pat on the back are symptomatic of people’s willful ignorance, and they remind me of the rampant ableism that people like me face daily. When we already have to deal with insurance obstacles, treatment delays, and income limitations, the least that people could do is see our humanity.
As someone who’s terrible at guessing people’s ages, I avoid doing so whenever possible. Instead I ask questions about what they do and let them talk about their lives. When people infantilize us, they assume we’re either younger than we are or unable to communicate simply because we’re physically disabled.
Since it’s SMA Awareness Month, many people in the community are posting on social media and other outlets to share information and stories with the general public. There are posts explaining what SMA is and the genetic factors associated with it, and others that provide glimpses into what living with SMA is like.
As important as it is to educate others about the scientific aspects of my disability, what I hope for is to change societal attitudes. Disabled adults are capable of so much more than what’s expected of us. We can work, have social lives, advocate for ourselves, and make our own medical decisions.
It’s time for people to stop addressing us like we can’t.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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Comments
Mike Huddleston
Hey Kevin -
Great article. Within the DEI space, these are referred to as microaggressions or other terms used are subtle acts of exclusion and exclusionary behaviors. Most are not based on harmful intentions, but these folks are often so uncomfortable that they struggle with conversing with those of us within the community, so awkward - and sometimes hurtful - comments are made. The examples you gave about surprised that I work and someone (not just in the medical field) talking to someone with me rather than me when it's a question or comment directed to me are just annoying. Often an opportunity to gently educate, but that should not be necessary within the medical field. Hey, might I suggest that we extend the doctor's rating of "bedside manner" to now include "wheelchair (side) manner"? Have I perhaps coined a new thing here??!!