Finding my focus in the face of disability #MemoirMoment

It was the year 2015 and I decided I wanted to start a blog only I wasn’t sure what to write about. So I didn’t pursue writing a blog at that time. Then life intervened and I was in a near fatal car accident in 2016 that gave me a severe Traumatic Brain Injury (TBI) amongst other injuries. After the grueling months of recovery and rehabilitation to learn how to walk, talk and hear again (although my hearing will most likely be greatly changed, distorted and diminished for the rest of my life), I decided that I wanted to get into writing again and I decided starting a blog was the perfect way to do that. And unlike in 2015 now I felt like I had a focus.

What was my NEW focus? In a way it was disability but it really became finding my abilities within my changed self. Nearly 7 years after the accident and I am still struggling at times (as I always will) to find out how to successfully manage my abilities WITHIN the changed parameters of disability. Yet, when I think about it disability and brain injury really gave me a focus…

March means brain injury awareness month (so I am just squeaking in this post in March). And while I flirted with disability before the Traumatic Brain Injury (TBI) with chronic daily migraines and Fibromyalgia, the accident and TBI really made me disabled and so it’s only appropriate that I write about disability during brain injury awareness month.

Recently I began participating in a collaborative community performance for a diverse cross-section of people. It’s part of a larger project and performance that will involve a total of 12 diverse neighborhoods within the metropolitan area all performing together at a local Minneapolis theatre. The “neighborhood” I am performing with is not my actual neighborhood but instead people within the metro who identify as disabled.

Honestly it’s a little conflicting calling myself disabled even though I very definitely am. Getting involved in something like this performance is good for me. It gives me ownership of my disabilities and in turn gives me focus. I think I take issue with the old school definition of disability (see below for the current Merriam-Webster definition of disability.

Disability: a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.

Merriam-Webster

As I have gotten involved with groups that focus on supporting and educating those with the particular conditions that I now have (hearing loss and brain injury) I have learned to be weary of the words “impaired” or “impairment.” So I would like to reword Merriam-Webster’s disability definition with that in mind. Here’s my reworked definition:

Disability: a physical, mental, cognitive, or developmental condition that affects a person’s ability to engage in certain tasks or actions.

My revised definition of disability

My changes to the definition were to take out “impairs” , “interferes”, “limits”, and “typical daily activities and interactions.” As I said, “impairs” is a word that a lot of people in the disability community take issue with because it “describes disabilities as a deficiency and imply that people with disabilities are damaged.” (From National Center on Disability and Journalism Style Guide.) I also deleted “interferes and limits” for the same reasons. And I deleted “typical daily activities and interactions” for similar reasons. I’m honestly surprised the word “typical” is still in the definition because any time you set up an expectation for what is “typical” or “normal” you set parameters to something that aren’t attainable for all.

So, why am I participating in this performance since I identify myself as a writer and not a performer? Simply put, I wanted to get better at telling my story and talking about disability so that I get better at writing about it (for my memoir).

Even though disability has taken a lot from me (independence, usable Hearing, emotions, music, etc.) through this experience of talking about my disabilities I realize that it has also GIVEN me something: a focus.

#Doodle / #AmCreating

I came up with this thought when thinking about disability: “A body that is battling itself is fighting the battle twice.” I decided to depict myself as a knight in shining armor.
This is my silly spring art featuring my cocker spaniel (not a springer) Selby.

A Selby Sweetie Conclusion

Before her haircut!

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