Multiple sclerosis, Struggles

Not disabled enough

I’ve never much noticed whether any quizzical, judgmental glances are thrown in my general direction when I break out my placard and park in a handicapped spot.

To the casual observer, I look to be in good shape besides needing to shed like 50 (OK, 75) pounds. Most days, I display no obvious symptoms. I haven’t used my cane in months. But I use my placard nearly all the time in the summer.

So I was thrown today when a couple driving by yelled at us as Nick pulled into the spot labeled with the big blue wheelchair.

They might not have seen the placard. They did see me as I got out of the car and walked 15 feet to the door.

“That’s a handicapped spot,” the man shouted from an SUV.

Shame bloomed across my face, my ears and cheeks flush with the humiliation of being singled out.

“I know. We have a placard,” Nick replied loudly.

The woman driver also chimed in. The man kept yelling.  So did Nick.

“My wife has MS. Fuck off.”

The next 10 minutes was a hot blur. Wracked by stabbing guilt, I sat down, my rubberized legs unable to stay steady.

I thought about perception. I thought about the “but you don’t look sick” phrase that gets tossed around so often. I thought about the “look at the placard, not the person” mantra I heard recently.

And then I thought — as I have many times before — that I’m just not disabled enough.

As if there was a sliding scale. For me, there kinda is. I don’t ever want to take a spot from someone who truly needs it more than me. But how do you rank need?

I need to conserve energy. I need to stay out of the heat. Do I need the shortest distance between Point A and Point B as I can possibly get? Debatable. I suppose I could get by with doing less, running fewer errands, going out to fewer places.

But really, that’s no quality of life. So perception needs to change.

How do you respond to people who think you don’t deserve a disabled spot? How do you show the invisible?




3 thoughts on “Not disabled enough”

  1. I feel the exact same way when I use my placard. But in this heat, I don’t feel like I have a choice. If I park further away and walk, I run the risk of spending days in bed because my fatigue will just take over. People really are jerks! I’m so sorry that someone treated you like that.

  2. People can really be nasty, soul-less creatures. Don’t feel like you have to explain/defend yourself to anyone! Only you know what you need, and those who choose to be unkind can stick it.

  3. i remember those days. Sometimes we just have to let ignorant people be ignorant. I expressed the same concerns to my MD when I could still walk and he said, “Nicole, if there’s anything positive he can get from this progressive debilitating disease…please take it” I then started using my placard like it was intended to be used and you know what it always helped me to conserve energy. When I felt a little more able-bodied, I took pride in not using it, then on those sweltering hot days I took pride in using it al well!

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