I have a good old fashioned essay that I have written in one impassioned plea. Today I ask the world to think more about accessibility because the onus of accessibility SHOULDN’T be on the consumer/user/customer/patient.
In this #MemoirMonday essay I give you a taste of one of the viewpoints that I have uncovered in my memoir: Laura the impassioned advocate!
In the last five years since my severe Traumatic Brain Injury (TBI) I have come to the unfortunate conclusion that far too much of the responsibility for accessibility falls on the consumer/user/customer/patient. That should never be the case but it far too often is. Specifically I am talking about hearing loss and captions because that is what my experience is in, however I am sure some of these same points could be made for other disabilities.
Far too often I have gone into an environment where I needed to use an app on my phone (Otter and Ava are my favorites) or technology on my computer (Google Chrome live captions and Web Captioner) in order to participate in activities or events. At live events ASL interpreters are common but live or open captions are not. As someone who needs to learn ASL, an interpreter shouldn’t be the only accommodation for those with hearing loss but it far too often is. The major impetus behind me wanting to become fluent in ASL is that I want to be able to use ASL interpreters when they are offered as an accommodation because far too often ASL is the only hearing loss related accommodation. During the pandemic as the world went more online that was both a good and bad thing for those with hearing loss or deafness. If captions were provided then video and video conferencing was a better option than live events. However that’s a big IF because I far too often have attended an online event that had no captions provided. Yes, in those situations I can use my apps or websites but I SHOULDN’T HAVE TO. (And I had do a lot research and troubleshooting to find the technology I use and it isn’t perfect. When I say I can provide my own captions with technology it isn’t nearly as good as if the venue or event provided CART [Communication Access Real-time Translation].) Not providing accommodation for hearing loss and therefore requiring the consumer/user/customer/patient to provide their own accommodation is equivalent to a public place requiring a physically disabled person to provide their own physical accommodations (like wheelchair ramps and handlebars). Requiring someone to provide their own wheelchair ramp sounds truly ludicrous and yet by not providing accommodations for those with hearing loss or deafness, facilities and events are doing exactly that. Was this an extreme and dramatic example? Perhaps. Does it get my point across? I hope so.
I can’t help but be fired up and frustrated by this frequent lack of accommodation. The reason is that far too often in this post-TBI/disabled world I live in I forget that I am any different than I was for 37 years (before the accident). When I do remember my disability I have a lot of hoops to jump through just to make it to an event (in person or online) that I usually am preoccupied with the logistics of getting somewhere (both physically or online) and often forget until the event is starting that I need accommodation. This experience of forgetting and being reminded of my disabilities is akin to Lucy pulling the football away from Charlie Brown when he goes to kick it. Each time Lucy does that to Charlie he is surprised to be foiled again and that he forgot that she does that. In my case, I am always disappointed in myself (almost as much as I am disappointed with the facility/organization) when a lack of accessibility occurs. Because at this point it’s happened so often that I shouldn’t be surprised.
Monthly Feature of The Week: An Essay: “The hills we climb”
Living with my parents now after my TBI they get an earful from me frequently about many areas that I feel passionate. A common theme in my little soapbox diatribes in the last five years is accessibility (as you may have guessed). I am constantly coming up with analogies to explain how I am feeling and various issues I come across living with my severe TBI and hearing loss. One such analogy I recently created is one I am calling “the hills of accessibility.” Since my disabilities have occurred as the result of an accident and injuries that happened when I was 37, I lived a bulk of my life without a disability. My Fibromyalgia and daily chronic migraines were omnipresent and controlling but as it was at the time of my accident they weren’t disabling. That may have (and probably would have) changed eventually as both conditions were getting worse. However, what this means is that I wasn’t disabled 5 years ago and now I am and over these last 5 years it’s been a rude awakening to realize that by and large the world ISN’T accessible. Because I was hearing and didn’t require accommodations for 37 years, I can sometimes forget that I need them now. It happens when I am excited to do something (go somewhere to see something or watch something online, etc.) and the excitement I feel for the activity makes me forget about TBI and hearing loss Laura. So I will go to the event or start to watch the thing online and realize “Oh shoot, I forgot that I need accessibility. Captions, etc.” And what should happen in those situations is that when I remember I need accessibility (or even before) it should be provided to me. Unfortunately 8 times out of 10 it’s not. The analogy I came up with is that often getting someplace (either physically or remotely) requires a fair bit of extra effort for someone with a disability. And when you fight through your physical and mental limitations only to be met with a lack of accessibility it truly feels like you climbed a big hill only to see a series of hills you still need to climb to get to your destination. It is truly heartbreaking to look forward to something only to realize your enjoyment of it will be stopped because you physically can’t hear or understand it. It saddens me on such a deep level that it isn’t an automatic to think about accessibility in this day and age.
#MemoirMonday Monthly Focus: Discussion of the Week- Outline
Note: If you’re new to my blog, I am working on writing a memoir about recovering from a severe Traumatic Brain Injury (TBI) and coma that I experienced in September 2016. Each Monday I focus on a different area of writing my memoir in a weekly blog post I call “#MemoirMonday.” You can read more about my memoir on my dedicated Memoir Monday page.
This past week I participated in two online writing groups (by the way, one had captions and one didn’t). However, I didn’t get to write during either of the groups (they weren’t “write-ins”). So I unfortunately haven’t gotten much more work done on my “outline/clean up prose” portion of my memoir writing plan. The group I am participating in this week is a write-in (so I hope to get things done). However, I did create another visual this week that I wanted to share. I took the points from the memoir writing planner and put them on a monthly calendar. The results make me very happy!