Telling Me I ‘Don’t Look Handicapped’ is Troubling For Many Reasons
By Paula Schuck
Photo © TonyTheTigersSon/Twenty20
Feb 17, 2021
“Hey, you don’t look handicapped!”
A few weeks ago, I was running errands when I heard it.
I had stopped into a local dollar store on the way home to get some things my family needed. I returned to my van with my bag in hand, put it in the back and I was getting into the driver’s seat when I heard a random person yelling at me.
First of all, it has been a while since I heard the word handicapped — it's 2021 — so that might have been the trigger than got my back up.
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But also: how does someone with a disability look? That’s what I wanted to yell at the stranger, a man travelling with another family member in the passenger seat.
Instead, I held up my accessible parking pass, renewed just last year. It had been clearly displayed in the window of the van where it was supposed to be.
“Not everyone with a disability looks the same,” I said. “A huge number of people have invisible disabilities. Many days you might not even know they have a disability or why they have an accessible parking pass.”
The man apologized sort of sheepishly and blurted something about how he was just looking out for the disabled community, which was ironic because he didn’t appear to have the slightest clue and his ableism was showing.
"I didn’t make the choice to get an accessible parking pass lightly. In fact, I agonized over it."
Let’s be clear: someone with an accessible parking pass owes you NO explanation of their disability or why they are using the pass and the parking spot. I didn’t owe that other driver any explanation. I spoke up anyways because he would likely do the same thing to someone else in the future. While there are visual signals for some disabilities, such as canes, scooters, wheelchairs and service dogs, there are also invisible disabilities.
Roughly 11 years ago, I started looking into getting an accessible parking pass.
I didn’t make the choice to get an accessible parking pass lightly. In fact, I agonized over it.
When I was growing up the word disability was spoken about in hushed terms and always as if it was a personal failure. What’s worse is that it always carried a hint of skepticism. “He’s on disability,” implied taking advantage of the system.
Mothering a child with an invisible disability means having to learn a lot on the job. Here are some things Paula Schuck has learned.
I have a child with FASD (fetal alcohol spectrum disorder), and I have Crohn’s disease, an inflammatory bowel disease. When my daughter was small, she was a runner. She was easily overwhelmed, had no impulse control and often had huge meltdowns on transitions, such as leaving preschool, or going in and out of school.
Numerous sensory triggers would send her into a fight or flight response, so she ran, hit or kicked. I often had to physically pick her up while also supervising my oldest girl through the parking lot.
There was easily a decade where she ran away whenever overwhelmed. That could look like her running in front of cars, or into dangerous situations.
She has worked on developing strategies to handle a lot of that and has only in the last couple of years pretty much outgrown running. She still has FASD, because a prenatal brain injury doesn’t go away. It comes with memory impairments and brain fatigue and a host of other symptoms.
"When my daughter was small, she was a runner."
There are days I barely think about my Crohn’s Disease and then other days when it is limiting. Today, for instance, I am having constant side pain. My energy is low, and I am trying to work, editing a magazine. If I had to drive anywhere today, it would tip the scale.
Some people in the disability space talk about The Spoon Theory. Christine Miserandino, a woman with lupus, coined the phrase to describe life with a chronic illness.
A healthy person starts the day with endless possibilities and energy to complete tasks. People with chronic illness start each day with a limited amount of energy, something Miserandino measured in terms of spoons. Getting up out of bed can take a spoon, while getting your medicine and pausing for breakfast would also take a spoon. We make choices every day on how to best allocate those spoons and we often run out of them early. Some days my spoons are gone by 2 p.m..
When pain and chronic illness are consistent companions, and you have kids, life can be challenging. I struggled and needed a way to be able to keep my kids safe while getting them to and from school and their appointments. So, after a ton of thought and handwringing, after asking support teachers at her school if they could help, and being told no, I printed out the forms and asked our family doctor if he’d sign it for an accessible parking pass. The doctor vetted the form and agreed it made sense.
Paula Schuck is witness to a lot of eye-rolling, and it has a lot to do with her daughter's FASD. She wants the eye-rolling to stop.
I began using it when I picked Ainsley up from school. It gave me access to a spot closer to the door at pick-up and drop-off time. I didn’t have to walk as far with a kicking, thrashing child in full sensory overload in my arms. On days when pickup was at 3:30 p.m. and I was running on empty, I could make it work.
Every single time I use the accessible parking pass, I still weigh the situation and evaluate how many spots there are and if we really need it. Are we having a good day or a bad day? If there are only two spots and I know someone with a wheelchair or scooter is coming to the venue, I won’t take it, ever, no matter how I am feeling. If my husband is driving, he drops us off at the door typically and then parks the van or car in a regular space.
For years, I have been asked why I have an accessible parking permit. This is why. My daughter and I both have invisible disabilities. The world often treats people with disabilities in horrible ways. They exclude and throw barriers into your path every day.
If you see someone out using an accessible parking spot, don’t assume they are trying to scam the system. That kind of attitude screams of ableism and it keeps people with disabilities in the margins of society. Don’t confront someone while hollering as this guy did.
Give them the benefit of the doubt, stop making assumptions and above all: be kind.
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