Read to me!
How are you doing today?
You don’t deserve to suffer
People worldwide don’t deserve to suffer
Yet if there’s anything this pandemic has blatantly shown us
It’s that many people unjustly do
How have your symptoms been? For me the early part of this pandemic changed very little of my day-to-day, already having “practiced” self-isolation for so long. But I know for some Traumatic Brain Injury (TBI) survivors, the extra layer of self-isolation along with added bodies, voices, and stimulation stuck at home has been tough. In the beginning I saw comments in support groups about how the news was fearful of this virus. And with a low energy brain trying to make sense of it all, things like anxiety may have surfaced.
And now, something else very important has bubbled to the top as the calls for social justice have gained more momentum with the Black Lives Matter (BLM) movement.
I am a white person writing this, sharing reflections on my role in fighting oppression, while still living with a mild TBI. These may be reflections other white TBI survivors have had, but not known where or how to open the conversation.
So I write this to my fellow white TBI survivors — I’m offering up this space as a call-in for you & I to have that conversation.
I know for some white TBI survivors, engaging in the news around BLM and systemic racism has been hard. I’ve seen people comment on how they wish they could do more, but trying to process all the information has been aggravating symptoms to near incapacity. Others have felt the need to pull away because the violent depictions in the media can be triggering to those whose brain injuries came from assault.
For myself, unlearning and relearning has indeed been a challenge on my brain. But even so, I still have heaps of privilege. I am afforded the liberty to educate myself on systemic racism as an abstract concept (at leisure), whereas those who are affected by it don’t have any other choice but to live every day the harms of oppression. And many may have to do this even while they suffer from their own TBI…
I don’t want my TBI to be an excuse to not show up for BIPOC rights. It may be hard, but I do believe that working through my role in taking down systemic racism needs to take some precedence, and that there is a way to do this alongside my own TBI recovery.
As someone who is white with easy access to food, shelter, and healthcare, experiencing life post TBI I may have truly felt for the first time just a little bit of what it’s like to be ignored, stigmatized, and discriminated against. Have you had a similar experience? Post TBI I’ve been disregarded by healthcare professionals, talked down to by my peers, had people speak for me when I didn’t give them permission, and I was discriminated against at my very own workplace by the director.
And yet, through all that, when I had to seek social assistance because the injury prevented me from working, I’m positive I received better treatment because I am white. I was brought up and educated in the same way and language of this broken social system, whose rules oppress the very people this system is supposed to support. I am grateful for the support I have been afforded. But at times it felt like a “white supremacy club.” Case workers would comment on how I brought all the right forms and filled them out correctly, sarcastically noting how many other people seeking social assistance fail to do so… Why did they feel the need to tell me this? I pointed out how their English automated phone system that listed all the forms to bring was hard to understand — even though English is my first language, I had to replay the message several times, each time the computerized voice drilled my already hurting head, leaving me dizzy. But did the case workers’ comments reflect just a barrier in language, or was there something deeper? It all felt off to me.
I’m not here to speak for all people who live with a TBI. Living with a TBI does NOT grant me yours nor anyone else’s knowledge and experiences.
And I’m certainly not here to speak for BIPOC folks. I simply cannot truly know that suffering.
I can only speak to my own experiences in my TBI community. And hopefully, for my fellow privileged white TBI survivors out there who might be overwhelmed with all these thoughts and emotions, hopefully this space can help you work with that so that you and I can progress as allies.
And to do so means we have to consider the oppression and systematic racism that exist in our TBI communities.
Have you noticed how most of the other TBI survivors you follow on social media or see in support groups are mostly white? I’ve noticed this. Why is it that our TBI community is mostly white? It can’t be that TBI & concussions only affect white people… There are so many blogs and podcasts from survivors, resoundingly from a white perspective. Don’t get me wrong— your story and everyone’s story is important! I too have a personal blog about my own adventures in post concussion syndrome (PCS). But when I actively look for BIPOC representation, I can count on one of my hands the number I find. How is it that TBI stories from a BIPOC perspective are overlooked? Or are they missing?
Concussion Be Gone
The Root article: Beyond Survival: Traumatic Brain Injury Is the Aspect of Domestic Violence We Need to Discuss
The Body Is Not An Apology articles:
1) The Intersection of White Privilege and Disability
2) 4 Ways Sick and Disabled White Folks Can show Up for Anti-Racism
It took me a long time to post this article, wanting to get it “perfect.” I even had some friends who advocate in similar fields take a look and critique my writing (great feedback, btw). But at the end of the day I’m sure I messed up somewhere. Because I’m going to mess up and you’re going to mess up. Giving into perfectionism doesn’t help the cause either — it just keeps us silent & stagnant. More on that here if you like:
Medium Article: How Perfectionism and White Supremacy Culture Are Connected
Thank you for taking the time to have this conversation with me.
And we absolutely can do it.
p.s. Part 2 coming soon