“OBVIOUSLY!” you may reply, shaking your head in disbelief that anyone would even ask that question. And yet…
My first experience of using the term disabled, and thinking about the ways the word works, came about when, in the early 1990s, my youngest brother was born with Down’s Syndrome (or Down Syndrome as it’s now called, for reasons which I won’t go into here). There is a term used for his condition which isn’t used anymore. So, content warning for outdated term: Mongoloid. Someone who was very well meaning, but whose vocabulary was clearly old-hat, asked me “And how is your Mongoloid brother?” Perhaps asking “And how is Duncan?” might’ve been better, but at least they cared enough to ask how he was getting on. We don’t say “Mongoloid” anymore because, strangely enough, the people of Mongolia thought it was just slightly racist and petitioned the World Health Organisation to change it. So they did.
But it also flags up the way language defines someone. We always referred to my brother as “having” Down Syndrome, because we didn’t want him to be defined by his condition. He “has” a disability, rather than us saying “he is disabled”. This was a change in language use, to what (I later discovered) is called “person-first”. The person comes first, not the disability.
And so for years – and years and years and years – I used person-first definitions of disability, even redrafting some documents at work to be person-first. And I kept this up, until I found out the other way of describing disability – a way which at first was uncomfortable because it challenged the person-first definitions I was used to. But… actually make a lot of sense.
The social model of disability says that people aren’t “disabled” but that environments are disabling. And this is true, as anyone who’s disabled will tell you. If I want to watch something on TV and it doesn’t have subtitles, I can’t watch it – and that’s disabling. If it does have subtitles, then I enjoy the show and I don’t think about the fact that I’m deaf. If someone uses a wheelchair and can’t get on the bus because there’s no ramp and no wheelchair spaces, so they can’t get to work, or to the shops, or to see their friends, then they’re disabled. If they can get on the bus like everyone else can, then they’re not disabled.
I find myself interchangably using “disabled” and “with a disability” or “has a disability”, except when I want to make a point about something being disabling. Otherwise, I use whichever fits the sentence best as I’m using the terms. I found it empowering to refer to myself as disabled, which no doubt seems bizarre to most people. But when I started to refer to myself as disabled, I took a leap forwards in my acceptance of my hearing loss.
This way of talking about disability is really helpful for activism, and it does reflect the lived experience of disabled people. Paralympian skier Millie Knight spoke at a conference I went to about online accessibility, and she said that she only thinks of herself as blind when she walks into something. I could completely identify with that, although obviously the deaf version. I don’t sit about all day thinking to myself “Hey, I’m deaf!” When I’m digging the garden, or writing, or cooking the dinner, my hearing loss doesn’t come into it. I’m not disabled at that point. But when, in the middle of that, someone rings my phone and I can’t decipher a thing they’re saying, I’m disabled. Or if a band I used to listen to announces a new album, and I know I won’t be able to hear their new songs, I’m disabled (and, obviously, bloody miserable for half an hour).
But are deaf people disabled?
Using the social model of disability, then we could say, yes, obviously, they are disabled depending on the environment: for instance, whenever a service provider’s contact is purely on the phone and not by email or live online chat (EE, I’m talking about you). But there are some people who are deaf – who are “culturally deaf” (or, some might say, Deaf – see my earlier blog) – who view being deaf as their cultural identity, and therefore not a disability. It must be nice to live in a community like the one in Sound of Metal.
I’m always willing to accept that people will define themselves in different ways. And I can read the paragraph I’ve just written and nod and say, “Yup, I can understand why.” But… I was reading an interview with someone about accessibility and the phrase “deaf, disabled and neurodivergent” kept coming up. I absolutely understand why someone who has autism (is autistic?) wouldn’t describe themselves as “disabled”, even if neurotypical people would, but seeing that phrase over and over again in the same interview, where deaf was being defined as outside disability, made me feel uncomfortable.
I mention this here because… well, this blog is about my lived experience as a deaf person, as a disabled person. For me, the two things are part of who I am. I’ve had to come to terms with being deaf, and the disabling problems it causes me – and let me tell you, it’s been bloody painful at times. But allowing myself (and feeling allowed) to say “I’m disabled” was so empowering.
And so, because I think it’s important to examine and understand why something makes us uncomfortable, I realised that “deaf, disabled and neurodivergent” felt as if it was negating my experience, as if someone was telling me that I’m not allowed to call myself disabled, or I’m not allowed to call myself deaf, or both. Or something. That it was taking away my empowerment from me.
But, instead resisting a phrase like “deaf, disabled and neurodivergent”, I need to accept it, and see myself in that phrase somewhere. Even though it’s difficult when, based on my own experience, inclusive language can come across as excluding. I can view my deafness as a disability, even if other people don’t view their deafness that way. Pick and choose. It’s a definition buffet, and you get to put as many words on your plate as you like, or none at all.