What does ‘disabled’ look like with myasthenia gravis?
A columnist considers the diversity of those living with a disability
“That spot is saved for someone who really needs it, someone living with a disability.”
You can unclench your fists and stop gritting your teeth now. If, like me, you’re a young(er) person with myasthenia gravis (MG) and utilize accessible parking spots, you’ve likely heard the above quote, or something similar. At 39, I know I have.
I’ve also been the recipient of angry and accusatory stares when my husband, Justin, and I pull into an accessible spot. When Justin walks around to my side of the vehicle to either bring me my cane or help me into my wheelchair, those looks often morph into something akin to pity. I hate it.
I started using mobility aids in 2012. Over the years, as MG has progressed and I’ve tried various treatments, the type of mobility aid I require has changed frequently. Some days, it’s apparent that I’m disabled. Some days, it’s not.
At the moment, I’m juggling a lot:
- I write this column.
- I’m an ambassador for Trend Community, a digital health analytics company.
- I’m an ambassador for the Travis Mills Foundation.
- I run a website design business.
- I help my husband run the back end of his personal training business.
- I’m getting ready to open a new business: a coworking space and business center.
- I manage my MG and various other health issues.
When people learn that I do all of the above, they tend to look at me like I’ve got two heads. Add in all my medical appointments and required 10 hours of sleep a night, and there are times when I wonder how I do it all, as well.
I’ve often caught myself saying that I don’t “do disabled well,” given my busy schedule, but what does that mean? What does it look like to be disabled?
I don’t know that I have the answers to these questions, but I’m going to try to address them.
Perceptions of disability
When you picture a person with a disability, do you imagine someone with prosthetics, or an ileostomy bag? Someone in a wheelchair? Someone with a cognitive impairment? A child who lost their leg to cancer but continues to thrive and play outside?
While some disabilities are visible, others aren’t as apparent. “Disabled” could also look like the small business owner who appears healthy, but closes their store daily to take a much-needed nap due to a traumatic brain injury. It could be the quirky employee who won’t look you in the eye or shake your hand because they have autism. It could even be the neighbor with a gorgeous head of hair that’s actually a wig, which she wears due to alopecia.
With so many different diseases, illnesses, and injuries capable of causing disability, it’s impossible to define what disabled looks like. I see memes all over social media about the importance of accepting that there are many hidden chronic health conditions. Personally, I’d rather shift the narrative: Instead of thinking about disability in terms of visible or invisible, we should embrace the idea that there are as many examples of what disabled looks like as there are stars in the sky.
How does one ‘do disabled’?
Just as there are countless answers for what disabled looks like, so, too, are there infinite ways to live with a disability. To “do disabled” simply means to live one’s life. And because we all have unique skills and abilities, that’s going to look different for each of us.
That means it’s time to flip my own frame of mind. Rather than telling folks I don’t do disabled well, I’m going to tell them I don’t sit idle well — but I totally kick a** at this whole being disabled thing, because I’m doing what’s best for me.
Note: Myasthenia Gravis News 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Comments
Janice mcgee
My daughter has M.S. but you can’t tell by looking at her. She is legally blind since the age of 19 and is now 60. She retired from Verizon on years of work but hasn’t been able to drive and depended on others, it’s surprising what she can see and what she can’t. You cannot tell by looking at her. She handles it well.
Shawna Barnes
Thank you for your comment, Janice. I'm glad to see that your daughter has found ways to live her best life despite loss of eye sight! You may want to direct her to our sister page, where my friend Rob writes about losing his vision and muscular dystrophy. https://musculardystrophynews.com/working-through-the-process-robin-stemple/