I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks.
Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick enough. I don’t look disabled enough. I’m too young.
If I get these comments when using medical aids, imagine what happens on the rare occurrence that I don’t use my aids and park in a disabled space, which I’m legally entitled to use. You got it. All hell breaks loose.
Just because I don’t fit society’s view of “disability” or conform to how a sick person should look and act. The much-used universal symbol for disability — the wheelchair — doesn’t always reflect reality. The definition of disability is often pigeonholed as someone requiring a wheelchair, or, at the bare minimum, crutches.
It’s so much more than that.
Painful, invisible conditions exist that entitle a person to a disability parking permit. Unfortunately, as has been demonstrated all too often of late, these invisible conditions are often assumed illegitimate by strangers. We are branded as fakers and con artists. Told over and over that we don’t look disabled enough to be entitled to a disability parking permit.
Take the recent story of Justine Van Den Borne. When Justine, who was diagnosed with multiple sclerosis at 35, parked her car in a disabled space at a shopping center in Melbourne, Australia, she had no idea she would return to see a nasty, anonymous note stuck on her windshield that read, “Did you forget your wheelchair?” It was placed directly above her disability parking permit on the dashboard.
How could this be? Simple: Justine walked into the shopping center.
Our opinions and conclusions are greatly influenced by what we see. If someone looks healthy, they obviously can’t be too sick, right? Too often these judgments are completely wrong. I ask you this: Would you like to stop breathing on the idea that air, being mostly invisible to the naked eye, isn’t a real thing? No, I didn’t think so!
Invisible illness, ghost illness or whatever terminology you want to use, manifests internally, affecting the body from within. Many don’t understand what an invisible disability is really like for a person. Extreme fatigue, chronic pain, disorientation, dizziness, vision impairment, difficulty with mobility, cognitive issues, neuralgia…the list goes on and on.
We smile, we laugh and we get on with things, trying to live each day to the best of our abilities and be happy. Know this though: Despite my apparent healthy appearance and sunny disposition, I am legally disabled. I am battling a daily struggle. I am restricted by chronic pain, fatigue and neurological dysfunction, including numbness, weakness and intermittent spasticity in my limbs.
As I recently described in a conversation to my doctor: “My right leg has been numb from thigh to ankle for the past three weeks; my hands are tingling and short-circuiting like a failing strobe light; fatigue has knocked the wind out of my sails; pain is having a party at my expense; the nerve burn is kicking into overdrive in my arms…you want me to keep going?!”
These symptoms aren’t always obvious to the untrained observer, so even though my life is far from normal, I’m often mistaken for having a perfectly functioning body.
And I’m persecuted for it.
We need to start assuming the best of people instead of the worst. Don’t jump on a person with a disabled parking permit just because the driver or passenger isn’t in a wheelchair.
As Justine, who took the note as an opportunity to raise awareness for invisible illness, posted on Facebook: “I am sick of people like yourself abusing me on my good days for using a facility I am entitled to.”
If you see a disability parking permit but don’t see a wheelchair, don’t adopt the negative stance and assume the person has stolen it.
Yes, I understand that faking disabilities can and does occur, but I choose to believe that the number of instances is relatively low.
We need to advocate for the rights of the disabled community, but abusing people over a parking permit they are legally entitled to use is not the way to go about it.
Reporting the Ferrari double-parked across two disabled spaces without a disability parking permit might be a better place to start.
A version of this post originally appeared on Starbrite Warrior.
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