Updates from the brainreels and a non-inspiring note

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This week, we’ve got just a little mini-cast available. Because there are a lot of folks who are just coming in to the blog and the “Stories from the brainreels podcast,” I took some time to put together a little update about what I do and why. The podcast is available down at the bottom of this post. And this post might be longer than the podcast itself!

One of the things I focus on in this mini-cast is about how lack of access and bad disability representations in the media are both signs of the fact that lots of non-disabled people are telling our stories for us without consulting us,  involving us, hiring us to tell the stories ourselves, or ensuring that we can even see or hear the media they create. I provide a lot of access in my media, and in this podcast I also let folks know that you can hire me to work with you on access. Closed Captions, subtitles, Audio Description, pacing, framing, transcription: all sorts of options are out there for increasing access. And I do a lot of them. Feel free to hire me at any point!

Here on this blog, I want to also give a nod to Meghan Daum, someone who recently wrote a lovely opinion piece for The New York Times that’s not about media but about our daily conversations and interactions. She points out the importance of letting us narrate our own stories and lives even if those stories come out sounding harsh, shallow, and devoid of anything useful. What’s important to Meghan–and to me–is that honesty be the heart of storytelling. And honesty doesn’t have to involve saying things to make other people feel better about your situation. Yet, so often, we tell our stories in ways that keep other people comfortable. Her piece is called “I Nearly Died. So What?

Just real quick: I am not posting this to challenge anyone’s narrative of their own experiences. I am not here to tell you that the ways that you understand your own experiences are incorrect. And I’m most certainly not saying that near-death experiences, comas, severe brain injuries, and intense experiences with disability are meaningless. No, not at all. It’s that I’m not a spiritual person. And perhaps for that reason, this opinion piece really rang true for me, because the author is pretty non-spiritual herself. But it’s not just that. It’s also that it’s Meghan Daum’s right to tell her own story in her own way and have that be accepted as her story. You can disagree with her or be disappointed in her lack of personal development through adversity all you want. But if you are not her (and nearly everyone or everyone reading this is not her), then you can also recognize that no matter what we want her to think, feel, or say about her near brush with death, it’s not our story. And what’s important to her is that she have the chance to tell it in ways that uplift her and her truth, not just make her listeners more comfortable. It seems that too often stories of disability and death are phrased so that everyone taking in the story is comfortable and satisfied. What about the storyteller?

Meghan had a severe infection that landed her in a coma. Now that she’s recovered, everyone is desperate to know what life lessons she’s gleaned from nearly dying, what perspective she’s gained, and what ways the experience has made her a better person. Her friends and family don’t seem to recognize that those are their values around her illness, not hers. She writes:

“[A]s friends came by with meals and groceries and showered me with well wishes and all manner of questions about my state of mind, the more it occurred to me that their hunger for stories of my cosmic transformation was rooted less in their concern for my soul than in their culturally ingrained need for capital-C ‘Closure.’ Because they wanted this chapter to end for me, because they wanted me to go back to being as healthy as I was when I was a whiny ingrate, they wanted to make sure I was sufficiently transformed so as to never whine or be ungrateful again. It was as if the only way any of us could be sure that my body was clear of infection was for me to officially become a better person.

Americans have always been suckers for stories of triumph over adversity. But increasingly, we’re obsessed not just with victory but with redemption.”

When it comes to brain injury and disability awareness campaigns, the emphasis is so often on the people who recovered from the harshest injuries and have returned to a state that is relatively close to “normal” or non-disabled. While these might be the most inspiring stories for others to take in, I have long argued that there are some stories missing. I’d like to see more keynote speakers and presenters who have not had strong recoveries and who may require enormous assistance or accommodations to tell their stories. I want way, way, way more people of color, people who live in poverty, and people who are pissed off and feeling dumped by the system and their personal connections to also tell their stories of brain injury and recovery (or lack thereof) at brain injury events and conferences. And now that I’ve read Meghan, I’m totally interested in hearing stories from other people who nearly died and kind of don’t really care because they’re ready to get back to the daily grind. After all, it’s just as valid an experience as any other. And validity should not be tied to how many people will cry out of sympathy, empathy, pity, or the joy of redemption when they hear your story. Everybody should have a place at the storytelling table.

Click here to get an accessible transcript of podcast episode #027.