Cerebral Palsy / Getting support / internalized ableism / Multiple Sclerosis / Uncategorized

Internalised Ableism, Week 5: Not Disabled Enough

I have an issue with appearing weak.

This all started when I was born with spastic cerebral palsy. I was raised to believe that I would have to learn to do things for myself. I was raised not to be a quitter and to move forward, despite the pain that I might be in. It didn’t even matter how much pain I was in; I would do it, and I would get it done on my own.

That was how I always did things. I had my family and friends, but ultimately, I knew I would have to do everything on my own. I had to prove to them, and to myself, that I could take it, that I could do whatever was in my path no matter the pain it caused me.

When the multiple sclerosis hit at the end of 2012, it flipped my world upside down. I didn’t know which way was up or where I was going in my life. The pain had increased, I couldn’t walk, and I had no balance or coordination. I still didn’t want to ask people for help. I would do everything myself even if I fell over doing it. I had neighbours helping to take out my garbage, my mother helped to clean the cat litter, and all of it made me uncomfortable. I was grateful, yes, but receiving the help of others made me feel out of place. I had failed myself.

I even looked at my cane as a sign of weakness. Yes, I wanted to walk again, but I didn’t want to rely on using a mobility device. I saw it as part salvation and part weakness. I wasn’t walking again on my own terms, I had to do it with a cane. Thankfully, I got over my aversion to the cane, but even now when my husband tells me to take my cane out with me during rough weather, I flinch inwardly.

When my neurologist suggested that I get a parking pass, I turned it down.

“I’d rather that go to someone more deserving,” I said. “There are people out there who are far more disabled than I am. Let the pass go to one of them.”

“You have difficulty walking. What would happen if it was icy or there were other difficult walking conditions?” she said kindly. “This is for your safety.”

I nodded and accepted the parking pass, even though I felt it made me look weak. I wasn’t disabled enough to warrant a parking pass. I can walk. I didn’t need it, I told myself.

I felt guilty using the disabled parking spaces. With my MS and CP, I have good days and bad days. I still worry about someone approaching me and demanding to know why I have a disabled parking pass, as I don’t “look” disabled.

I have difficulty with kindness, with friends offering their arms for me to grab onto when we’re going down curbs and onto the street or they are helping me down a flight of stairs. I used to say, “No, it’s okay. If there is a railing I can grab onto, I’ll be okay.” I always had some excuse as to why I didn’t need their help.

Riding the bus is a whole other matter. When I get on the bus, sometimes people try to offer me their seat if I’m standing. In the past, I almost always turned them down. I didn’t think I was disabled enough to warrant a priority seat. At the same time, I wondered what there was about me that tipped people off that I might need one. There was a deep shame within me for appearing disabled and accepting the help of others, even if it was just a seat on the bus.

However, thankfully things change. I’ve recently started accepting the help and kindness from others. I feel no ill will about using a disabled parking space and have started accepting help on the bus, even sitting in the priority seating on occasion or accepting seats from other passengers that offer. A part of me, a miniscule part of me, still feels weak for not doing it all on my own as I had for so long.

I’ve come to realize that although I sometimes need help or assistance, it doesn’t make me weak. Instead, I’d like to think that it makes me stronger for admitting to myself when I do need help and accepting that help.

There is still a small part of me, a fraction of a piece, that feels guilty. However, that’s overwhelmed by the kindness of people. I spent too much of my life thinking that I had to do everything for myself and getting angry when things wouldn’t work out because of an issue or it was a difficult day.

Though I approach my life from a viewpoint of positivity, I’ve come to accept that not every day has to be a beacon of shining light. By the same token, I’ve come to accept that it’s okay to ask for help and that accepting it doesn’t make me weak at all.

I must also do away with the notion that I’m “not disabled enough.” It’s not a question of varying degrees of disability or who is more disabled and more deserving of kindness. We all deserve kindness, even me. 

It’s been a lifelong journey to get to this point in my life. I can only hope that things will get easier as I go along. Though I still have moments where I think I’m being weak, I must remind myself that its my choices to accept help that make me stronger.

Jamieson Wolf, author
Jameison Wolf

Jamieson Wolf is an award-winning, number one bestselling author of over sixty books and writer of Two Steps at a Timea blog about having multiple sclerosis and cerebral palsy. In 2019, he released his gripping memoir, Little Yellow Magnet, followed by Love and Lemonade (the third book in the Lemonade Series), and his short story, The Descent, appears in the Nothing Without Us anthology.

He is an accomplished artist who works in mixed media, charcoal, pastels, and oil paints. He is also something of an amateur photographer, a poet, a perfume designer, and a graphic designer.

Jamieson currently lives in Ottawa, Ontario with his husband Michael and their cat Anakin. You can read more about Jamieson on his website or his blog, and can connect with him on Facebook and Twitter.

5 thoughts on “Internalised Ableism, Week 5: Not Disabled Enough

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