Next Time, Ask Me Why I Need an Accessible Parking Placard

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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Heat Sensitivity in MS | Main graphic for column titled

To the person who left the note on my windshield:

I wish you would have asked. I would have told you that I have secondary progressive multiple sclerosis, a neurological disease that impairs my ability to walk. My MS has worsened over time and will continue to progress. I can’t predict where I will be in a year, and I may need a wheelchair. This placard allows me to park my car near the entrance to the grocery store.

I wish you would have asked. I would have told you that hot weather makes me sick, as the heat magnifies my symptoms. I slur my words, shuffle my feet, become confused and disoriented, and ultimately succumb to heat exhaustion. This placard allows me to park in the shade.

I wish you would have asked. I would have told you about the chronic pain, which never stops, and often brings me to my knees. I’d tell you about the deep bone ache, the musculoskeletal pain, the incessant spasticity, and the peripheral neuropathy. I would have noted that the only time I am not in pain is when I am sleeping, and that each step I take is difficult. This placard allows me to park near the entrance to the store.

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I wish you would have asked. I would have told you about the fatigue. I would have told you how difficult it is to live. How the exhaustion never improves. And how malaise and lethargy are constants. This placard allows me to park in the first few spaces.

You did not ask. Instead, you left a note. You wrote that I was lazy. You wrote that I stole the space from another person who needed it more. You called me names.

I would give up the placard for life without multiple sclerosis. But I cannot change what is. I make the best of every day, one day at a time. I will not let ignorance change my heart. I will work harder to erase the stigma and elevate the need for acceptance.

Now let me ask you a question. Next time will you ask?

***

Note:Ā Multiple Sclerosis News TodayĀ is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those ofĀ Multiple Sclerosis News TodayĀ or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Karen Leach avatar

Karen Leach

I so sympathise with Jennifer I to have RRMS and hate how people look at me when parked near any store .

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Ben Hofmeister avatar

Ben Hofmeister

Ah the burden of the invisible and often misunderstood disease.

"Do you really need that spot? You seem to be walking fine to me."

"And I'm probably using up all my alloted steps for the day doing it. 30 minutes from now I might come out of the store, desperately hanging on to the grocery cart like it's my (somewhat inconvenient) rollator. If we had the time and you seemed open to the concept, I'd try to explain predictably unpredictable to you."

I'm in a wheelchair now, so I don't have the invisible stigma anymore. Just the misunderstood part that often seems to lead to misplaced positivity.

"Wow, I wish I could park close to the store and didn't have to walk in."

"I know you're trying to "help" me find the silver lining here, but please stop because you suck at it."

I never actually say these things. I just grit out a smile and think them in my grumpy, cynical mind. I imagine you do too. Our true feelings are as invisible as our disease.

Ben
18disabled.com

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Paulette Brown avatar

Paulette Brown

Your comment about trying to help reminds me of my favourite poster..."You dont look sick" reply "you dont look stupid"

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Christopher avatar

Christopher

Hello Jennifer.

Itā€™s a weird concept to leave a note on someoneā€™s car in a disabled parking space, that also has a placardā€”itā€™s like the confrontation version of hit-and-run. I donā€™t understand the animosity, or sometimes the jealousy, towards people who park in disabled spaces when the disability isnā€™t apparent. I used to park in a regular space to leave the disabled spots for people who might be worse off, and because not enough pushing myself could lead to more disability. At least until my neurologist started scolding me for pushing too hard. Sorry to hear about your experience, even though itā€™s fairly common and especially in OCā€”used to work in Newport Beach by Fashion Island, and rude comments were/are de rigueur. I actually liked it when people approached me, because I got the chance to explain MS to someone new who might not be familiar with it, plus I tend to talk a lot. On the obverse, I would approach people people I thought were abusing the spots and gently tell them not to forget their placard because itā€™s a big fine. Or let them know there are a lot of people in the area who really need the spots and this just makes it more difficult for them (those were the people that would say theyā€™re only going in the store/bldg/etc really quick). Nowadays itā€™s even more pervasive and flammable with everyone so on edge with the Covid epidemic.

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Annie G avatar

Annie G

Haha ? love it. If you could read my mind!!!

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Maria Mead avatar

Maria Mead

Well said! I can't even imagine going to the trouble of imagining that someone really isn't disabled and then writing a note to them. Obviously, they have too much time on their hands and must have their own personal issues if they spend so much time focusing on their alleged lack of privilege.

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tina marie Carvelli avatar

tina marie Carvelli

tHANK YOU FOR THAT "you don't look stupid" RESPONSE. I've never come up with anything quick to say at the time, but I will remember this.

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KARIN AUBREY avatar

KARIN AUBREY

I have run into this so many times. I no longer drive now, but i still have a placard so that who ever is driving me can park close and we still get looks and stares even tho I am on either crutches or a rollator getting out of the car. I say screw them.. if they want to be like that. I had one person actually take the last spot designated for handicapped people at a grocery store and they did not have a placard, palte or sticker and then had the nerve to tell me they didn't think i needed it either.. i didnt look "handicapped enough" and they actually raced me to get to it first. People are so odd anymore...

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Helen Polydoropoulos avatar

Helen Polydoropoulos

I had a lady recently not want to sell me a property in Tasmania, Australia... Why?? Well this extremely knowledgeable person did this because her sister has been living in a warmer part of the country and in wheelchair because of her MS ..
The seller believed she was very well educated in Multiple Sclerosis, well educated enough to tell me what suits my body and what helps MY Multiple Sclerosis ..
There have never been or ever will be two exact same cases of MS... Never, we are all different. We all have daily struggles and pains.... But nothing hurts more than when an uneducated individual tells you how to live with your illness based on experiences they have seen with others....
NOT their own... But others...
It facinates me... It really does...
I ended up getting another property in Tasmania and have been here for a few months and am feeling great... Not perfect, but definitely positive and smiling... Ignorance makes me very very angry, like the previous lady wrote of her experience with parking...
If you are unsure, pls ask before judging... It takes two sec to think before blurting out words that may not mean much to them... For us, this is our life....

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Fiona Black avatar

Fiona Black

According to the WHO nigh on 80% of people with disabilities have no visible signs of their disability.
I imagine it would help if knowledge and understanding of disabilities was included in childrenā€™s education and here in the UK, for example, if signs for the disabled didnā€™t solely include images of those using wheelchairs or walking sticks.
Personally Iā€™d like to see an internationally recognised symbol that could be attached to the car windscreen or say to a bag youā€™re carrying, that alerts anyone looking that youā€™ve an invisible disability and this is why youā€™re using the disabled parking bays or toilets.

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Teresa Melendez avatar

Teresa Melendez

I also have had a few of these "encounters" and did respond verbally and politely as to why I parked in the handicap space! I had all the same thoughts as everyone else. It still surprises me, too, that people would even question where we park in light of seeing our canes, etc! Just one other thing to handle!

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