A symbol of a person in a wheelchair on a handicap parking sign shows a nervous expression as glaring eyes stare and floating fingers point at them.

Why I Am Scared to Own a Handicap Parking Sticker

Editor's Note: This article was written by Janeil Whitworth, a Health Leader living with cystic fibrosis. Read more of Janeil's articles at Cystic-Fibrosis.com.

Disability is not always visible. Disability can come in many different forms, and it looks different depending on who is carrying it. It's not a one-size-fits-all situation.

I feel like most people know this – but not everyone does. People continue to make assumptions about others' capabilities or accommodations and then decide to cast judgment when they don't fit into their idea of what someone with a disability looks like.

Unfortunately, it happens all the time. I know because the fear of disability judgment keeps me from using a handicap parking permit.

When disability is not visible

Just the other day, another woman with cystic fibrosis (CF) in my area posted a photo of a letter left on her windshield from a stranger shaming her for using her handicap sticker.

The letter said she needed to try to think of others first since she obviously wasn't handicapped. The word try was patronizingly underlined 3 times. The author continued to say she knows the sticker is not hers because she is "young and moves swiftly." She said she wished she could move as swiftly as the driver. Lastly, she recommended looking up the laws about using someone else's handicap sticker when they aren't in the vehicle.

In reality, it was the driver's handicap sticker that she rightfully received through her doctor in accordance with the law because she has CF. I know she felt angry and upset about the letter. Rightfully so. Looks can be deceiving, can't they?

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I consider my rare disease...

I am not as healthy as I seem

On the outside, I don't look ill. To an untrained eye, I look quite the opposite. I have 2 small children; I am young and slender. It's not until you get to know me that you slowly realize, in comparison, I am not as healthy as I seem.

In addition, I work very hard to function at a normal level, but it's a complete facade. It's an illusion of medications, pain relievers, airway clearance, genetic modulators, and years of figuring out how to use the least amount of energy to accomplish something. It's a completely made-up dance that I have perfected to the very last detail.

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I'm scared to use a handicap sticker

It's also the reason I refuse to get a handicap sticker. Would a handicap sticker be beneficial to me? Probably. Even so, the thought of using a handicap sticker terrifies me and fills me with anxiety.

There are many times I circle the parking lot, knowing that settling on a spot far away will be difficult for me, especially with small children and a shopping cart. However, I suffer through the task.

Unfortunately, it seems I am more afraid of being wrongly approached about my disability than I am of being short of breath and coughing.

Disability judgment is hurtful

I know that many people reading this article will think you shouldn't care about what others say or think about you. If only it were that simple. It's difficult to be blissfully oblivious to the opinions of others when behind closed doors, because you know the sacrifice it takes to appear normal.

How hurtful it is to turn around and be shamed for taking a small step to make your life easier or improve your quality of life. And to be judged by a stranger who has no idea about your life! (ANGER!) These types of actions and opinions by people belittle someone living with a chronic illness or disability. You might as well scream, "Try harder to be normal, or you should be sicker. You cannot be both!"

The narrative of acceptance

My word of advice, if you are ever in a situation where you see someone acting as if they aren't sick enough according to your standards, just stop.

Don't say a word. Don't leave that note. Don't highlight how they should be acting according to your ambiguous criteria, etc. Frankly, unless you are that person, you have very little understanding of what happens under their skin.

Instead, take a step back and rewrite the narrative of acceptance. Understanding disability is often a spectrum of the unseen and everyone is just doing their best.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RareDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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