the space in between: on hearing loss and cochlear implants

Originally published in the AFBC newsletter. Words by me, edited by Liv Woodward.

You think you know about cochlear implants. You’ve seen the videos of cute babies smiling as they hear their mother’s voice for the first time, or the young woman crying happy tears when she can finally hear again, and you think you know how cochlear implants work. You think they cure hearing loss and transform lives.

But what these videos don’t tell you is that, for people with cochlear implants, these videos are anything but inspiring. They’re inspiration porn at best — and harmful misinformation at worst. They widen the gap between d/Deaf people and hearing people, and they are — quite frankly — irritating.

I was born profoundly deaf. When I was 8 months old, I was diagnosed as such; and when I was 5, I was fitted with a cochlear implant (CI), having tried mainstream hearing aids before. I am one of the few people stuck in the gap between d/Deaf and hearing people.

For me, these Facebook videos are uncomfortable. For a start, most of them depict a false reality of children and adults with cochlear implants. They show children or adults in the audiologist’s office, reacting positively when they are ‘switched on’ and realise they can hear for the first time (or for the first time in a long time). Whilst it makes a nice video, however, this isn’t the case for most CI recipients.

It certainly wasn’t for me.

I don’t remember my first switch on, but my mother said that I was sat in silence and my eyes were watering. She took me to the toilets where I’d be more comfortable, and then I broke down in tears, claiming that I didn’t like it at all. It was pure sensory overload for me — but I didn’t say anything because I was afraid of disappointing people.

What these videos also don’t tell you is that CI recipients are not simply switched on immediately after surgery and suddenly granted the ability to hear. The switch on usually happens about 6 weeks after surgery, and while some people can hear and recognise sounds immediately, for others it can take weeks, months, or even years of hard work, rehab, and patience to be able to easily recognise sounds.

There’s a popular misconception that CIs fix hearing loss; that they’re a miracle cure. So much so that whenever someone meets a d/Deaf person, they usually ask if they’ve tried getting a cochlear implant, even though all they ‘know’ about CIs is that they ‘fix’ the ‘problem’.

To some extent, this misconception also extends to many d/Deaf people themselves. Many people in the d/Deaf community are against CIs, claiming that CIs are unnatural and an attack on d/Deaf culture — a culture where hearing loss or lack of hearing is viewed as something positive; something to base identities on and build communities out of. They criticise hearing and d/Deaf parents alike who make the decision to have their d/Deaf babies and children fitted with CIs, claiming that those parents are trying to rob their children of their identities and keep them from the d/Deaf community.

But this isn’t necessarily the case.

Many children with CIs, including myself, grew up with sign language and had access to d/Deaf culture — and that didn’t change when we had success with our CIs. My childhood was the best of both worlds, because while I loved being d/Deaf, signing, being friends with d/Deaf children, and being part of a wonderful community, I also loved learning to recognise and discover new sounds, improving my speech and written English, and being able to communicate with hearing children. I especially loved being able to take my external device off when I had a headache or at bedtime for a peaceful night’s sleep.

Sadly, it turned out that I was young and naive, because I grew up and started feeling like I didn’t belong — in either worlds.

When I started secondary school, I was ‘that deaf girl’, and my intelligence was completely underestimated. Children used to cover their mouths when speaking to mock me for being unable to lip-read, and they were only interested in learning how to swear in sign language.

Conversely, I started to stand out in the d/Deaf community because I prefer to be oral and only sign when necessary. I’ve seen d/Deaf people say ridiculous and hurtful things about CIs — things like how CIs are small machines inside our heads, or that we turn into robots when we have them fitted. I’ve been told that CIs were created to destroy d/Deaf culture as a form of eugenics. I’ve even seen people say they’d rather die than have CIs.

Between ignorance from hearing people and hurtful words about CIs from d/Deaf people, I often feel incredibly isolated. I don’t know where I belong. On the one hand, I’m too deaf for the hearing world; on the other, I’m not deaf enough for the d/Deaf world.

It’s time we started bridging this gap — and it’s time to support people like me who are stuck in the middle. I shouldn’t be shamed by d/Deaf people for wanting to hear; and I shouldn’t be presumed cured by hearing people because I have a CI.

So today, if you do just one thing, take the time to share this newsletter. Share my story and the stories of others like me. Educate yourself — no matter what side of the hearing divide you are on — and together, we can start to truly close the gap.

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