I experienced a feeling today that I didn’t have a word or phrase for, so I began looking on the web to see if I could find something that would explain this feeling I was having. I found the perfect term/phrase for this feeling in a podcast episode, but the feeling itself is more important.
Even though the below was just an online situation, I’ve experienced this feeling offline too but this morning, it started online.
It was early in the morning, and I was checking my email. I got an email from someone that wanted me to consider writing about their disabled business or whatever it was. They weren’t important, so I was just about to dismiss it, but something got the better of me and I opened the email and skimmed the first line out of curiosity.
The first thing I heard was,
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I immediately reeled back like I’ve just been slapped across the face. I skimmed the email some more. They wanted me to look at their website. Links were displayed all throughout the email, insisting I check out this page or that page or this other page.
I had no drive to click on any of them, at all, thanks to the unlabeled image at the top of the email. If they couldn’t be bothered to make sure an image was labeled, I didn’t want to experience their attempt at an accessible website.
I deleted the email. The next email was an email from a friend. It contained an attachment to their book they wanted me to read and enjoy, but I didn’t know what format the book was going to be in because they didn’t ask me, so I sat there, pondering the gravity of converting a, most likely, untagged PDF into something I could easier navigate through with my Braille display and screen reader. How much work was it going to be to convert this PDF? I navigated to the attachments section in question and opened it. Sure enough, it was a PDF. Reacting before opening it, because I didn’t want to be disappointed, I just immediately wrote back to the friend and said,
Can you send this to me in Microsoft Word format or plain text?
I then sat there, after sending the reply, wondering if I should even try to convert this or not. I went to the next email.
It was an email from my publisher, sending me my royalty statement. This was a PDF, but, at once, flashes plagued my mind of trying to convert the previous inaccessible PDF into something that could be easily navigated. I was terrified. I didn’t want to go through that again!
I didn’t even want to deal with this now, even the sending of the inevitable reply and telling the publisher, again, that I was blind and used a Braille display and screen reader so could they send it in a different format? I knew I was retreating, and retreating fast, and the day hadn’t even started yet. As I was navigating through my other emails, I just kept having visions of a few days ago wherein I was trying to convert an untagged royalty statement holding tables and untagged charts and no headings into something readable. That one task took me the whole day and I didn’t want to go through that again. I didn’t want to spend my whole morning trying a method that previously worked in order for the conversion attempt to fail, leaving me to send it to a friend and schedule a Zoom meeting just so my royalty statement could be read. I didn’t have anybody that lived with me that could read this, and I didn’t want to schedule a video call just yet with someone, so I just tried to focus on other emails.
As I skimmed the subject lines of emails, one singular thought kept percolating, like a restaurant that always serves burnt toast for some reason. I don’t want to open these because I don’t want to deal with the inaccessibility of the content today.
The email subjects soon became a repeating question. What access hell would I need to endure in order to read this email? Is it worth opening just to be confronted with an inaccessible email? Probably not, so why should I even bother with this one when I already experienced three inaccessible emails today?
Thankfully, my phone rings, shaking me out of my recrimination. it’s an offline friend, and he wants to know if I’d like to go to an open mic tonight. I would, but how loud would the venue be? Would there be a lot of chairs? Was the venue going to be so small that I’d end up knocking things over like last time? I didn’t want to experience that again. So, retreating into safety, into a world where I knew things were going to be accessible because I was going to make it so, even if I was going to be at home, alone, I said, not tonight.
I was retreating into access, and he knew it because he suggested we could watch an audio described movie at his place instead of going to another unfamiliar place. I knew the layout of his house, I wouldn’t need to plan ahead, or to try to save up energy for tonight. I knew I’d be in a supportive environment with the movie and dinner at his place. I knew what access I was going to encounter and the limitations of the environment. I knew the access I was going to get, and this made things far easier for me to agree to. As I said yes, though, I was trying to pinpoint my visceral refusal of the open mic earlier. What feeling was that? Why did I have such a visceral reaction when I unequivocally love open mics and open mic style events?
As I smiled to a grateful exclamation of my company tonight, filled with an audio described movie and a place where food would be cut up for me so I wouldn’t have to worry about taking to long or holding others up, I examined this feeling I was having all morning. I couldn’t quite pinpoint it, but I could describe it.
A visceral reaction to a hostile environment. Knowingly or unknowingly.
Flashbacks of a previously inaccessible experience, putting me back into that feeling of ache and emotional pain.
Assessing an environment long before even dipping my toe into the environment based off earlier harm with the intent of avoiding a hostile environment.
I wrestled with this feeling all morning before finally going to a search engine and typing in something I’d thought I’d never type. What are the symptoms of PTSD?
PTSD came to mind because previous encounters were shaping my current feelings. While I didn’t experience all of the symptoms or causes, still, some jumped out at me starkly.
Re-experiencing
Avoidance and emotional numbing.
Hyperarousal (feeling "on edge")
These described what I was going through, but nothing tied it to being disabled in a world that was never designed for me. Some academic papers, like this one, identified this exclusion but didn’t put a succinct word or phrase onto this. On some days, I was willing to tolerate it, to even push past it, but today, I just wasn’t having it. While spoon theory didn’t quite match up with my feeling, it was tangential. I had absolutely no more energy to fight with an inaccessible world.
At that moment, I was extremely grateful for my offline friend that immediately suggested a safe space. I guess he could hear the utter exhaustion and frustration in my voice so wanted to do his part. I wished more of my friends did that.
I then began looking up something strictly related to accessibility. Accessibility trauma. Disability related PTSD? Spoon exhaustion. I didn’t have a good word for this feeling, and none seemed to exist, but then I found this episode of the Access Fuckery Podcast. The transcript with Thomas told me I wasn’t alone in this feeling.
Thomas Reid used the term access Trauma to describe the feeling I just had. In truth, I think it fits perfectly. While I have a different kind of access trauma than, say, my Deaf friends, I think we can all appreciate and understand the feeling of the world constantly reminding us that the world we’re forced to participate in wasn’t designed for us.
Others would say I should get over my access trauma. Thank you for coining the term, Thomas, by the way! It perfectly puts defining words into feelings and experiences. The thing about access trauma though, is that it isn’t a thing I can leap over, because it will creep up again, or ram smack dab into me again when I least expect it. It will be relentless, unforgiving, and not at all surprising. Throughout my whole life, I’ll be forced to confront access trauma daily, even with friends that are temporarily abled. Access trauma, or accessibility PTSD, or whatever term ends up defining this feeling, isn’t something we’ll be able to just brush off like a pernicious crumb. It’s going to remind me, over and over again, that I’m adapting to a world that isn’t designed for me and it’s going to remind me that my tricks for skirting around barriers won’t always work the next time I try a trick to get around an inaccessible world and it fails.
I don’t have a solution other than to surround myself with people that understand inadequate access and who just understand that community care can help ease the pain. Will it be perfect? Of course not! Nothing is perfect. At least, though, with community care, and interdependence care, we’re building off other’s knowledge and resources and skills. Temporarily abled people can help strengthen community and interdependence care. In fact, I wish more would, even if they’re not perfect at it. Even if they mess up the first time, they’ve got my support even if they don’t always get it right.
I haven’t figured out a good way to combat access trauma, or accessibility PTSD, because it’s embedded into society, and I know there will be days where I don’t have the spoons to leap over the inadequate and inaccessible society, I must battle every day. As of right now, I’m taking small steps that will cultivate spaces where I don’t have to battle access trauma. I don’t expect everybody to understand my hesitation when they invite me to an unfamiliar location, but I am making them listen and pay attention.
I think, when it comes right down to it, that’s the best way I can think of to really combat access trauma. Professional, personal, or hell, even sexual. While I can’t battle every inequity that comes my way, I can stop and make people understand why I’m refusing to experience access trauma again. I think that’s a form of self-care we all should take. My true friends will listen and act. I don’t know what I’ll do with the friends that refuse to hear or listen to my pain.