The cloak of disability and the power of perception
How SMA affects the way people perceive and treat me
“Are we wearing a cloak of disability?” my mom asked as a vehicle pulled out in front of our wheelchair van. At least, that’s what I thought she said. It turns out that she actually said “cloak of invisibility,” which made more sense. Although our big, black van is far from invisible, the other driver didn’t seem to see it.
Despite having just been cut off in traffic, everyone got a good laugh out of the situation thanks to me mishearing my mom’s question. It got even funnier when we realized that it could be turned into a hilarious costume for me.
I don’t wear coats with sleeves because SMA makes it difficult and uncomfortable for me to reach behind my body or move in general. Instead, I favor lightweight cloaks that can be draped over me and my wheelchair. If we pinned a piece of paper with the words “cloak of disability” to the front, I’d have an amusing and easy costume in a pinch!
Magic or perception?
While on the surface, this exchange seems merely entertaining, thinking about it further leads me to consider the idea more seriously. Is the disability cloak just an imaginative joke or could it be a real concept we encounter throughout society?
If you’ll join me in the fictional wizarding world of “Harry Potter” for a moment, we’ll inspect Harry’s invisibility cloak to better understand how its real-world disability counterpart might function. In both the book series and the movies, the invisibility cloak magically does exactly as the name suggests and turns the wearer invisible. In other words, it alters the perception of the person who’s looking at Harry so that they don’t see him.
Disability can, at times, have a similar effect. In both positive and negative ways, it impacts how people relate to and interact with me and others living with SMA or other disabilities. It’s not magic, but it can cause apparent invisibility.
An assortment of spells
Despite SMA being a highly visible condition, I’m not always noticed in public as much as I’d expect to be. Family and friends frequently help me to navigate my power wheelchair through crowds that don’t part or to gently guide people aside when they stop in front of me, often blocking my view or path.
On the flip side, the disability cloak can also make me stand out. While some don’t see my wheelchair rolling by, it captures the interest of many others, especially children, whose curiosity I’m more than happy to indulge. Whenever people of any age take a genuine interest in my disability, it opens doors for connection, education, awareness, and maybe even friendship. But if the interaction is too brief to spark these deeper conversations, I still hope that when someone meets me and my family, it prompts kindness and compassion that lasts beyond our encounter.
Who do you think is older, Halsey Blocher, left, or her brother, Lucas Rosbrugh? How old do you think they are? (Courtesy of Halsey Blocher)
Speaking of age, this is another area where my disability influences how I’m perceived. Like many with SMA, my build is fairly small with dainty features nestled into a large wheelchair that exaggerates my tiny size and the illusion of childlikeness. Therefore, I’m often mistaken for being significantly younger than 27.
While it can be frustrating to be treated like a child or a teenager instead of a grown woman, it does lead to amusing moments. Lately, my mom has taken to asking strangers which of her children they think is older — me or my younger brother, who is 21. They usually catch on quickly that it’s a trick question but also admit that they would’ve thought my brother is the older sibling had we not brought it to their attention. It’s been a fun experiment.
Harnessing the power
Of course, there are much more serious ways in which perception impacts the disability community. We regularly face stigma and must combat false narratives. But perhaps these examples can serve as reminders for all to be mindful of what we perceive reality to be. Once we’re aware of how we’re perceived, perhaps we can use this power of perception for good, like Harry Potter uses his invisibility cloak to save his friends and school from evil.
I also find that people with disabilities are often perceived as motivational. While the word “inspirational” is highly controversial, it can’t be denied that a large percentage of the disability community has taken to using their circumstances and experiences to motivate others with whatever platforms or positions of influence we are granted.
We don’t have to be witches or wizards to change the way people see things. We could change the world someday. In the meantime, if wearing a disability cloak gives us the power to brighten one person’s day or motivates them in some way, I hope we’ll wear those cloaks with pride.
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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