After being diagnosed, I had to come to terms with the fact that I really couldn’t be in a band anymore, playing guitar and bass and programming drum machines, and writing songs. I just don’t have the hearing to do it anymore, plus there’s the risk of loud noises further damaging my hearing.
But what I can do is write. It doesn’t require any hearing. I just sit down and type, or hold a pen and scratch away at a notepad (and, quite often, end up with the pen leaking all over me).
I joined a group for disabled writers, as I’m a writer, and I’m disabled, but after reading about the experiences of other disabled writers, I really have been scratching my head. Can I call myself a disabled writer when my disability doesn’t get in the way of the act of writing?
A quick aside: if someone is born deaf, or goes deaf in early childhood before acquiring spoken language, then their first language is often sign. And that means that if they become a writer, they are writing in their second language. So in some respects, someone in that position could be considered a disabled writer, if they’re ok with the word “disabled.”
Someone who’s blind and needs to dictate their work, someone with mobility issues which make it hard to use a mouse and keyboard, someone with energy impairment who can’t write for long periods, or who can’t write comfortably for long periods due to joint issues, or who has ADHD so focus can be a problem, or who has depression and can’t write sometimes – these are people whose experience of getting the words down are impacted by disability. My disability doesn’t get in the way at all, so I’ve been rather… “beep beep, vehicle reversing” about seeing myself as a “disabled writer” at all.
I stupidly forgot about the other things that go on around being a writer. Because writers don’t just sit alone in a room (a cold, damp garret, banging away at a decrepit old typewriter…) “getting the words down.” We do actually speak to other people, we get invited to do talks, we go to conferences, we might go on the radio and TV. And this is where being deaf is (using the social model of disability) very disabling.
Discussing work with my co-writer can be very difficult as I have to keep saying “pardon?” – I’m just extremely fortunate that she is one of the most tolerant person I know when it comes to my hearing issues. Giving talks is very challenging – I gave one a few years ago at “Who Do You Think You Are? Live” and my hearing aid (back then, I only wore one) was picking up noise from all over the venue, which was jolting me from my flow. I’ve attended conferences held by writing associations, and I just can’t spend the time and money on them anymore because I can’t hear the speakers. I’ve had to sit down the front, on my own, away from my friends, trying to hear, then when there’s break out sessions and 200 people are talking at once in a small, echoey room, I just can’t hear a thing. Networking? Completely impossible. And when the rooms have assistive tech, often it just doesn’t work. Writing association meet-ups aren’t quite as bad, but they’re still very challenging for me. I did several appearances on radio when I still had one good ear, but now both my ears have conked out, I just can’t hear the presenter’s questions. There must be some sort of tech that can help deaf people to be radio show guests, but I’m scunnered if I know what it is. TV isn’t such a problem as it doesn’t require wearing headphones, or being interviewed over the phone, but it’s still nerve-wracking because until I’m in a situation, I can’t predict what potentially disabling issues there might be.
So, yeah… even if being deaf doesn’t stop me getting the words down, actually, I am a disabled writer.