The Incredible Lightness of Change

I was a disability advocate for six years, operating under the Independent Living Philosophy. The Independent Living Philosophy is the belief that people with disabilities are the experts in their own lives and learn best through the peer model. Nonprofits that operate exclusively under this philosophy must have at least 51% of their staff identifying as having a disability. I thrived in this environment. I found community and learned how impressive we were as a people group.

The reality was that I had gotten to a place where I had truly overcome my disability. Yes, the ignorance of people could dampen my day but for the most part, I was a rock star of my own making.

I was told routinely that I was impressive in my ability to adapt. I was a role model for other people with disabilities. I gave presentations on disability awareness and adjusting to a disability. Because I was a pro. I had adjusted.

***

It happened so quickly, the degeneration of my ability to walk. My nerves had spasms I couldn’t ignore. My hips would pop out of place. The disks in my back shifted with every other step. At one point, the walk from my driveway to the front was so daunting that I had to get on all fours and crawl to the door.

Could I still walk? Yes. Was I capable of walking further than from my bedroom to the kitchen? Barely.

I sobbed my way through the decision to get a wheelchair but I knew it was the best option. wheelchair 2

Because I had a secret of sorts. The doctors I had seen in high school and in my early twenties had told me that a wheelchair would be in my future by age 30.

I’m 29 now.

I struggled with how to reconcile the life I had had with the life I saw unfolding before my eyes. I had flashbacks of how strong I had been, walking well over a mile in the heat while carrying grocery bags. Maybe that’s nothing to you but for a young woman with a disability, I was immensely proud of my body.

Even as I went through the lengthy process to get the wheelchair, I did it through hidden tears and anxiety.

I was ashamed to tell anyone. I had so much disability pride. How could I be so sad?

I began to realize that even within myself, there was a hint of ableism that said I have a disability but at least I can walk.

Acknowledging that mentality I had was utterly convicting and ultimately humbling.

***

It’s been a week in my wheelchair and I have already fallen in love with it. The chair is like another skin, another part of me. My arm is sore from pushing the chair, especially since I use a one arm drive, but it’s worth the work out.

I’m still learning how to get up curbs and navigate carpets. I move awkwardly but I have friends who are wheelchair users who give me advice and cheer me on.

It’s been a blessing. A tough, awkward, light blessing.wheelchair

 

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