What’s in a name?

Deaf. D/deaf. Hearing loss. Hearing impaired. Hard of hearing.

We’ve all heard (or read) some or all of these terms, but what do they actually mean?

You might think it’s fairly obvious – that each term means someone who doesn’t have the full range of “normal” hearing – but I’ve found it very difficult, since my diagnosis, getting my head around what each means. There’s a range of hearing loss implied in each term, but since my diagnosis, I’ve described myself as deaf, because it’s easiest to understand. It’s just one word, one syllable. Nice and short and sweet. Guys, I really cannot cope with hearing things like a “normal” person, so “deaf” should flag up the fact that hearing isn’t a strong point for me.

Once I was diagnosed, was coming to terms with my disability and the fact it’s (at the moment) unfixable. It’s painful to adjust to a disability, and it was hurtful when other people, who don’t have any personal, lived experience of hearing issues themselves, corrected me when I referred to myself as “deaf”.

“No, you’re not deaf, you have hearing loss.”

When someone at work said this (I won’t go into the details of where and when this happened, as it would identify them), I mentioned it to the guy who was doing tinnitus counselling with me. He was shocked, and he brought up my audiogram on the screen and pointed at the big chunk showing the dive in my hearing ability in the mid-range.

“Look at that! You’re deaf!”

And so, quite frankly, if an audiologist is shocked at someone saying I can’t call myself deaf, then I shall continue to call myself deaf.

But it’s not as simple as that. There are different kinds of deafness or hearing loss. There’s people who were born deaf, or became deaf in childhood, so that their first language is a sign language. There’s people who become deaf as a young(ish) adult, like me. Then there’s people who have geriatric hearing loss – the kind hearing people might be most familiar with. But then there’s different amounts of hearing loss, and there’s the kind of education people who are born deaf or become deaf in childhood have – do they attend mainstream school with a deaf unit, do they go to a special school? When I was growing up, we had a family friend who was born profoundly deaf, and he went a deaf boarding school, but his first language wasn’t sign – his mum insisted he learn to lipread. So you can already see that these definitions, “if you’re born deaf, your first language is sign,” vary from person to person.

My partner and I decided to teach ourselves sign, using the book British Sign Language for Dummies. I should point out immediately that “For Dummies” is a series title, and not an ablist slur! The book sets out who the different groups of deaf people are:

  • “deaf” means someone who has hearing loss, for any reason, at whatever level of loss.
  • “Deaf” with a capital D rather than a small “d” means “Deaf” is an identity, like British or Australian, and is a shared culture – with sign, and Deaf history, Deaf Olympics. If you don’t sign, then you don’t use the D.
  • Hard of hearing: someone with mild or moderate hearing loss, and possibly relies on hearing aids to make use of their residual hearing, as well as some lip-reading (I refer you to my previous post, and the utter impossibility of understanding anything someone’s saying while wearing a mask). And this is someone who has acquired spoken language before going deaf.
  • Hearing impaired: “a generally acceptable term used to describe someone who has a hearing loss” – either born deaf, or becoming deaf later in life. But – if someone refers to themselves as Deaf, they don’t see themselves as impaired and so won’t use the term.
  • Deafened: sudden, profound loss of hearing in later life.
  • Deafblind: someone with dual sensory loss.

This wasn’t the first time I’d come across Deaf. I was putting together a training session on online accessibility and in the course of some energetic googling, found D/deaf mentioned on a university’s accessibility page. As much as I find “D/deaf” rather awkward to read, and to be honest, how do we pronounce it?, if that’s what the majority of people are comfortable with, then ok, let’s go with it.

But! I am in a group for disabled writers, and during a conversation in the Facebook group, someone said that Deaf or D/deaf isn’t actually used by… well, the people the capital D is intended for. The person saying this wasn’t deaf themselves, and said that in putting together accessibility guidance for a project they were working on, they’d spoken to various deaf groups and were told by the deaf people in the groups that Deaf isn’t used. And in fact, that Deaf was imposed by people who weren’t deaf. Or Deaf.

I’m so flipping confused. Maybe some groups of deaf people, or deaf individuals, refer to themselves as Deaf? Maybe it’s a regional thing, so that in certain countries, people born deaf who sign refer to themselves as culturally Deaf, and in other countries people sharing those same characteristics don’t. I would’ve thought that the authors of a book on sign language would know plenty of people who were born deaf and use sign as their first language, and so would use Deaf. Or maybe the person in the Facebook group meant that people do use Deaf and deaf, but not D/deaf?

But then this is the “fun” thing about disability (but are deaf people actually disabled? See a forthcoming blog….). When you’re diagnosed, you’re not handed a cheat-sheet giving you the terminology. It’s something you have to find out for yourself. And it’s difficult when you’re trying to accept a diagnosis and there’s a war of words (which I would struggle to hear if it was spoken aloud) about how you are to define yourself.

So, like a lot of things in life, there really isn’t a cosy, simple conclusion here. Words can define us, or exclude us, offend us, identify us, enrage us, confuse us: and sometimes, empower us.