Listen to this post: 
Artist and activist Carole Zoom donated to our recent Kickstarter campaign and won what I thought was a very cool perk! Her perk was this: “Cheryl will write an original post about you or publish a post that you write on WhoAmIToStopIt.com.” True to form, Carole redeemed her perk by telling me that the post she wanted to see was my reflection. She wanted to know what I’ve been learning through this filmmaking process. I balked.

No, Carole, I want to write a post about you. I want to advertise the great things you do, like your social justice work with McKenzie River Gathering Foundation or your artistic activism staging stories of how inaccessible so many hotels are in “No One Wants To See the Wires” with Impetus Arts. What about your accessible space that I’ve rented many times for events called Zoomtopia?

I realize now that a reflection on what I’ve learned is still a post about Carole. I recall sitting in her home years ago, and she asked me why. “Why disability? Why are you here? Why are you involved? Why did you pick this group for your activism?” (At the time, I was non-disabled. So the questions make sense.)

I can’t remember what treacly blather I spouted off at the time. So let me now honor her request to reflect on what I’ve learned through this current process. This filmmaking process where I no longer consider myself non-disabled. Or the kinda-disabled status I felt I had when I had a severe voice disorder. It was disabling but not something that I felt granted me the right to say I was in the disability community. That’s a weird opinion to me now.

1. You don’t have to have a disability to be part of the disability community. You don’t have to wring your hands at night fretting over whether your kinda-disability makes you disabled enough to be involved in disability justice. You don’t have to ignore disability issues because they don’t pertain to you. Everyone is needed for disability justice. Just like you can be white and fight to unlearn racism and white supremacy like I’m working on, you can be non-disabled and fight to unlearn ableism like I’m working on.

2. Protests, rallies, petitions, legislation, art-making, debates, where you shop and don’t shop, donating, providing one-on-one supports, storytelling:  these are all possibilities for getting involved. Different people are called to participate in different ways. And access issues are sometimes at the heart of why some people don’t show up to certain things.

3. There is absolutely nothing OK about the way that white people continue to dominate the disability rights and justice movements as well as claiming that we’re the ones whose contributions should be documented for history. It’s so completely not OK that when I do an online search for “Black + brain injury” or “African-American + brain injury” I find statistics. I don’t find blogs, films, podcasts, TV shows, books. I find statistics. I find medical facts on prevalence. Search for “brain injury” without a race or ethnicity, and bazillions of hits come up that include these cultural pieces, plus self-advocacy work, peer support opportunities, state organizations and on and on. This is just one example.

I wrote to the National Black Disability Coalition in my typically over-confident way when I first started working on the film. I asked them to advertise that I have this super great community disability arts blog here. (The one you’re reading right now!) If any of your readers want to showcase their art on my blog, I’m open to it! Tell them to send their art my way!

They wrote back and asked what I plan to do for them. What, exactly, do we get out of sharing our art on your blog? What, exactly, are you going to do to promote the artwork and activism of our community while you’re off gathering more hits for your website? Why, exactly, should we continue to be available to white researchers, artists, documentarians, anthropologists, and more, who’ll share our work and get credit for finding and sharing our work?

I paraphrased just there. These aren’t the exact words Jane Dunhamn used. But this the message I humbly and graciously received. With my head down. With my tail between my legs. I rewrote my post and resubmitted it to her. I offered that anyone who reads my post can contact me for free support in setting up your own blog or streaming radio show if you don’t know how to do that already. Once you get it running, I’ll link to your work on my blog to signal boost you. She posted that one.

4. “Who Am I To Stop It” is not a film about raising awareness about brain injury. It is not a film about “these people don’t let disability stop them from reaching their highest potential!” It is not educational. It is not inspirational.

You might have your awareness raised, feel educated, and feel inspired by the film and the people in it. That’s a wonderful thing if any of that happens. But make no mistake, the impetus behind this documentary film doesn’t include those goals. The deeper I’ve gotten into making the film and keeping up the blog, Carole, the more involved I’ve become with other politically-motivated, justice-oriented groups and people. And the less time I’m available to spend with groups that are apolitical or that focus on the individual’s rehabilitation and re-normalization more than on acting on societal barriers to inclusion and equity. The less time I’m available to spend with groups that refuse to look at disability as a social justice issue, deeply intertwined with other identities that either land you privilege or land you oppression.

Step by step, I’m re-aligning with different people and groups. In 2015, you’ll hear about more of them on the Stories from the brainreels podcast and this blog.

I hugely support the many groups, forums, blogs, and sites out there that share the personal stories of people with brain injury. I love how straightforward it can be nowadays to find engaging and enriching narratives about people’s lives, injuries, recoveries, struggles, and triumphs. I don’t want any of those places to ever go away. I think I’ll even put together one blog post that helps you navigate to some great places to read and share in personal narratives around brain injury experiences. In the meantime, this film and the blog will continue to be a place that amplifies the more politicized areas of disability discussions because I feel this is not yet well represented in the brain injury community the way that personal narratives are. And besides, I’m really motivated by writing about it. And who am I to stop it?