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Struggling to not feel like a failure


Okay all of you 'struggling to stand' or 'not wanting to have to use a wheelchair' or others that look upon using a wheelchair as a symbol of failure, you're about to get punched.

Punched in the figurative sense.

I am about to go on my soap box and my Irish is up which means that I'm fairly peeved (though I've been mulling this over for awhile so I'm not as angry as I once was, which means there will be fewer expletives and a kinder tone).

If you've read this blog or know me at all, you know that I did not go easily into using a wheelchair as my primary mode of transport. I too, may have had a little bit of your attitude about the wheelchair being sign of failure or of having given up. My sister, Kerri, helped put it in a different light. She said, and I'm paraphrasing here, "It's actually an energy saver since walking is stressful and you're worried about falling - using a wheelchair will take away a lot of that stress. You will have more energy to do things since you won't have to expend so much energy getting to the thing you want to do."

Genius.

I did spend a lot of energy just NOT falling. I would focus so singularly on NOT falling or tripping. Like getting into the grocery store to grab onto a shopping cart that seemed at times like a lifeline, then pushing the cart through the store  then to the checkout then back to my car where I'd often be so weak that I would be shaking and sweating loading those into the car. It was, for me, a pride thing that kept me from using a motorized cart in the store, but that could have saved a whole lot of energy and time.

When I read this column {link below}in the MS Society publication, Momentum, by Richard Cohen (journalist and spouse of fellow journalist Meredith Viera), the memories of those struggle-to-stay-upright times came flooding back. I felt sad for Mr. Cohen and his stated struggle to stay standing.

  "I have no intention of going gentle in any passive posture," he wrote. "I believe in the fight. Many do not understand. Attitude is a player. Some see how difficult moving around — merely walking — can be for me."

I resent 'passive posture' and the allusion that by using the wheelchair on has given up the 'fight'. 

He is not alone. Many individuals with disabilities have echoed similar statements saying things like "At least I'm not using a wheelchair" or "I haven't given up yet, I am still walking"

I am not passive and my posture is definitely NOT passive either.

I haven't stopped fighting while I'm wheeling around. In fact, since I'm wheeling around I feel I am able to participate more fully in life since I am not fighting to stay upright. I feel I am able to fight for visibility and access because I have more energy to BE visible and see where access needs to be improved.

I think of our recent trip to the Dominican Republic where there is not ADA. If I hadn't been there in my wheelchair, the owner of the cam where we stayed would perhaps not known that the flagstone pathways were difficult to navigate in a wheelchair. Or the staff at the resort would not have understood that a room on the second floor, in buildings without elevators, were not accessible for a woman in a wheelchair. Or having an accessible bathroom is great, but the toilet in the bathroom needs to have a seat.

I think of various situations I have encountered where accessibility came into question, and the people that have observed and often said "I never knew". I couldn't have opened those eyes had I not had the energy enabled by the wheelchair I'm using. 

If you'd asked me five years ago to sing praises about using a wheelchair, I would have looked at you like you were crazy. I would still prefer to be walking and certainly not to have MS, but because I cannot and because I do, I am grateful to have Hot Wheels. 

https://momentummagazineonline.com/struggling-to-stay-standing/ 



#msadvocate #izzyswheels

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