Thoughts on the powerful essay Against Access essay by John Lee Clark

I just finished reading a wonder piece titled, Against Access by John Lee Clark. It is a fabulous essay on the trials of “accessibility” and how it fails deaf, blind, and DeafBlind people.

I can pull a hundred quotes from this essay, but you should read it yourself.

I do have some thoughts that are too many for Mastodon, so I want to share them here.

How our world changes

I am hearing disabled and it is progressive. Every year more of my previous world slips away and I have had to move on from some that used to be important to me. One of them is music.

John Lee Clark speaks to their love of sports in the beginning of the essay. This quote is what I want to speak to:

“At first, what I read or listened to live through an interpreter teemed with players I had worshipped with my own eyes. I knew their faces, their tics, the way they licked their upper lips or groaned or stared or gasped in horror or with joy. As they faded into retirement, there was less and less poetry in what I gathered, replaced by new and strange and meaningless names. Direct experience goes a long way. It meant that sports did resonate with me for years after my last eloquent encounter. But without direct experience, I learned I couldn’t access the same life.”

I have a similar experience with music. A younger version of myself loved music and, in particular, live music. As my hearing loss progressed, music has become just a jumbled mess of sounds I can no longer associate with a melody. Instead it is more akin to chaotic noise that causes my anxiety to boil over.

For years this only applied to new music. I could still appreciate old music, from my younger days, because I had memorized the songs. I knew the melody without hearing it. I already know the lyrics. I don’t need to hear everything in the song, I can hear it in my head and just need the pacing from the sounds I can hear.

However, it is not the same. I am experiencing a relic. In fact, what I hear in my head no longer matches what I hear with my ears. In many ways, the songs are different in my head. Guitar riffs more grinding, backing vocals more emotional, drums more pounding. A better version of the song.

So, I stopped listening to music altogether. I can’t access the same life any longer. I have created something new, and for me, better. I don’t need help with “hearing music” or more ways to read lyrics, and I don’t miss music. I have created something better and it is unique to me.

On inclusion

Hearing folks desperately want me to experience the world as they experience it and not once consider they should experience the world how I experience it. This is something I could not articulate until reading this essay. Again, a quote:

“Why is it always about them? Why is it about their including or not including us? Why is it never about us and whether or not we include them?”

I wish I could personally tell everyone in my life that my hearing aids aren’t for me. They are for a world that doesn’t come to me, I have to go to them. My hearing aids make it so the hearing world doesn’t have to change they way they operate or function in the world the way I do. I personally don’t care for my hearing aids. The world makes so much unnecessary noise. I like my quiet life. I like having better conversations because we only speak when we have something to say.

Supplemental information

I have a love/hate relationship with captions and subtitles. But, they are supplemental to what I am watching. In some cases I don’t get captions, but a transcript at the end of an event. I don’t hear the music, I get pointed to a site with the lyrics.

A quote:

“This isn’t complementary access. It’s a replica, divorced entirely from the original. This is how we frequently find accessibility features—as sorry excuses for what occasioned them in the first place. Access itself is too often all we have, a dead end, leading nowhere: captions without images, lyrics without music, raised lines without color, labels without objects, descriptions without anchors.”

Captions skip a lot of information and in some cases, miss the point completely. Captions don’t indicate inflection on a word or the tone of a comment. Lost is the emotion behind the words.

Lyrics don’t convey the emotion of the music. One of my favorite songs is “Time” by Pink Floyd. The lyrics are key to understanding Roger Waters message of aging. However, the most important aspect of the song is the David Gilmore guitar. The sadness he conveys through his instrument is overwhelming. The highs and lows of life and the weight of expectations pour from his guitar.

Simply stating the lyrics will never give me that experience.

Interpreters and Supporters

At the moment I don’t need an interpreter. However, I do often need a person with me for support. I will be in situations where I know I will need a hearing-abled person with me to help translate what is happening and what someone is saying to me.

The trouble is that the only information I get is when someone is speaking directly to me. I still don’t get the context of the things happening around me.

Quote:

“There’s usually a power imbalance, such as between a hearing teacher and a Deaf student, a hearing doctor and a Deaf patient, or a hearing boss and a Deaf employee. With this power imbalance in mind, we can understand why ASL interpreters often “belong” to the hearing party more than to the Deaf party.”

I can walk into a room and get a read on what’s happening. I can fill in the gaps of my quiet world with careful observation. But it doesn’t fill in all the gaps. I can walk into a room and tell people are tense and then take me 5 minutes of observing to figure it out.

A better way would be to have my supporter tell me, “There are two people in the corner having an argument.” Now it makes more sense. The room is tense because people can hear an argument and know what it is about. The next step of my supporter is to ask, “Would you like to know what they are arguing about?” Now I can feel like I’m in the room and not just a piece of furniture.

“The question in working with an interpreter for us then becomes: What do we want to get out of it? What we want is never what hearing and sighted people plan or propose to do, because they never ask us, ‘What shall we do together? How do you want to do this?’ They merely wish to include us.”

Final thoughts

There is much, much more to this essay. I have only pulled out a couple of moments that stood out to me. I have not covered the many points for blind and DeafBlind people as I don’t have direct experience.

However, I absorbed this essay. I feel it moving around my brain like a salamander on a wet rock, its suction-like feet sticking to wrinkles on my brain.

I wish you to do the same.

The Audio Issue: Against Access by John Lee Clark

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