National People With Brain Injury Acceptance and Appreciation Month by Cheryl Green

It’s About People, not Brains

Cheryl GreenThis year, I got to present at some events for national Brain Injury Awareness Month. I ran around calling them National People With Brain Injury Acceptance and Appreciation Month events! We need these events to focus and share crucial information about injuries, the impact they have on people, and new diagnosis and treatment protocols. But to me, when the emphasis on brain injury overshadows discussion of the people who actually have the brain injury, I get a little nervous!

A Person is More than a Brain

I didn’t used to get nervous. When I trained to become a speech-language pathologist, I didn’t worry about events where only professional experts spoke about people with disabilities. When my own brain injury took me off the career track and turned me into a patient, I started to feel the burden of how often other people spoke for us and about us and around us. Again, we need professionals to share their training, knowledge and strategies. I just think we have to stay aware that a brain injury doesn’t happen to an isolated brain. It happens to a brain inside a person. That person is inside a community.

At our annual regional brain injury conference this year, several of us peers with brain injury got to present in our own full sessions. It was utterly delightful. I wish I could have gone to see all the peers speak, but when I wasn’t presenting, I was at home napping.

Strive for Excellence and Speak Your Truth

One speaker I did see was painter Kris Haas. I see her a lot. After all, she’s in the documentary film I’m making about artists with brain injury. We film her, and I go home and watch the footage. So I always hear her stories twice. What was great this day was that no one was filming. I was not there to see how this would fit in as a scene in my film. For once, I got to just sit and listen the same as everyone else and really hear her.

I could not catch my breath for the whole presentation. No one in the room could. Kris poured out her heart and soul, shared her art, and gave attendees their own hardcover blank books to take home so they could begin to create. She told us to not worry about what we put into the books because we never have to share them with anyone who might judge. She also asked us to not judge our work. Just create. Just put something into that book and then proudly say this:  “That’s my creation. I did that. I own that.”

Getting to share in Kris’s journey at the conference was a breath of fresh air. She talked about her personhood and her striving for excellence in new ways. To see her up there with her PowerPoint clicker and lapel microphone, taking the stage that’s usually reserved for the experts who might like to examine her and make some medical recommendations? It was great. She has been someone who doesn’t get out much since her brain injury nine years ago. Being in my documentary film is wonderful for her because it’s a chance for her to connect with people and advocate for herself. But it’s my film, and so I’m still somewhat speaking for her through how the film is directed and edited. Not today. Not this time. This time, Kris did what so many of us hold as an ultimate goal: to speak our own truth in our own words and truly be accepted and appreciated.

2 Responses to “National People With Brain Injury Acceptance and Appreciation Month by Cheryl Green”

  1. Cheryl Green says:

    Marih, as always you are an innovative thinker, and you express the tension so well! The autism community went through this years ago and banded together to create their own conferences where no medical professionals could speak–unless they were autistic, of course. I know this is why you co-founded BIRRDsong several years ago. It’s to address all these obstacles openly and to give the place for peers with brain injury to shine and recognize that we are experts in our own lives and have a lot to say about ourselves. I feel like what you wrote here about Kris and me reflects totally on you as well. If I’m doing these things, you were one of my greatest teachers in how to do them and why.

  2. Marih Alyn-Claire says:

    Hi Cheryl, yes I agree with you. It is all about “the person” not the brain nor the injury. The power of person is greater than either one. Attempting to reboot our life following such devastating shifts in lifestyle, personal abilities, earning power, relationships, one’s future and overall life condition is our daily challenge. Both Chris and yourself are excellent examples of how the human spirit can excel in spite of tremendous physical, emotional and social stigma and ignorance. The brain’s essential role in our human experience is fairly new to the scientific, medical and therapeutic community. What we’ve come to know is experiential and is not in a text book. This is why we need to create our own brain recovery conferences. We are the ones doing the recovering–not the “professionals”. Therefore we have totally different points of focus. Of course the conference is offered from the “treatment” Vs the “management” perspective. As persons living with the daily challenges of brain injury, we are the experts on management. Of course they can’t provide adequate insight, leadership and training in an area they have little or no experience with—that’s our job.

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