Are you ever seen as more or less disabled than you actually are?
My name is Jo and I’m a Graphic Designer for VIP World Services.
A part of having an invisible illness is fighting to be respected as an unwell person.
I am in the process of being diagnosed with an autoimmune condition and often suffer from various symptoms but I mostly experience low energy and brain fog. Aside from the constant feeling of not being taken seriously by healthcare professionals, people in my life have repeatedly made me feel guilty or bad for having genuine health issues.
Being told things like ‘everyone feels tired sometimes’ never gets any easier to hear, and people suggesting that your issues are invalid starts to infiltrate your psyche - what if you’re making it all up? What if you’re attention-seeking? Maybe you’re just weak and pathetic?
I’m not the only one who feels this - my friend Aislinn has Ulcerative Colitis, an autoimmune condition that causes inflammation and ulcers in the bowel. On the outside, she may seem fine, but in a flare-up she may be fatigued, in pain and literally internally bleeding, all while people are assuming she’s lazy for resting or trying to insinuate they understand her unique struggle.
Additionally, another friend of mine has Autism. People often hold her to the standards of someone who is neurotypical. She says,
“They’ll say my autism makes me different or quirky, but the second it actually causes them any inconvenience they don’t want to acknowledge it”.
When I think about this issue but extend it to Visually Impaired People (VIP) who use canes and may wear sunglasses and therefore have a disability that is visible, it makes me wonder if they may have the inverse problem - are they seen as their disabilities before they are seen as themselves? When a VIP meets a new person, how are they treated and spoken to? Are they assumed to be less capable than others?
I asked about this in some online communities and many responses were exactly what I had guessed; their disability, when visible, was seen, and oftentimes led to incorrect assumptions made about their capabilities.
One of the first responses I received was from someone who has been totally blind since birth. They said,
“People assume I had a child to be my eyes, that I am only with my wife because we are both blind, and that I must be so happy to have family nearby to help me. It's ridiculous.”
Another person commented,
“A guy at a concert that I attended with my mother told me that it was so nice of her to take me so I could get out of the house. I had never met the dude and he was obviously unaware that I‘ve done several international (across Europe + Canada) train and plane journeys on my own and commute to Uni multiple days a week equally by myself.”
Not all assumptions are met with some good intentions. A response read,
“On my first day of college, I had to let the instructor of my first art class know about my disability and that if I needed any help I'd let her know. Her response - "So why are you here?"”
I didn’t expect there to be many if any, responses about visual impairment being treated as an invisible disability. It was a lot more common than I thought it would be.
One person explained it as “the conflict of being treated like everyone else and being treated with a bit of extra attention due to my blindness”.
Others were entirely treated as non-disabled when they needed accommodations. A newly blind person said,
“I've been noticing how a lot of people are unforgiving towards me as I'm attempting to manoeuvre sidewalks and stores in general.”
Another VIP similarly added,
“Others assume I can see or I'm faking my blindness. If I don't have my cane out when I walk through a crowd I'll bump into people (I'm sorry old lady!) and get some dirty stares. If I'm walking around my apartment or down an empty sidewalk I don't need the cane. I just use it to let others know I can't see them.”
Surprisingly, some people try to dilute the struggles of VIP - in the same way, that I’m told by people that “I get tired too”, a reply says,
“When I try to explain I have a visual impairment, I'm usually met with something along the lines of "Oh I totally get it, I couldn't even get a driver's license without my glasses." Maybe it's because I also wear glasses? Or do I do enough "normal" stuff in the meantime that folks don't understand that this impedes on a lot of things I try to do?”
I don't think there's a solid solution for this problem in society, but compassion and listening can bring us a long way. To assume as little as possible about someone’s disability would be best; make an effort to speak to those around you and understand how you can best support the disabled folk in your life, rather than assume what might be best for them.