Insight: Unpopular opinion – I’m not against gene therapy for deafness (BSL)

I saw the news – during deaf awareness week of all times – that a young girl had been treated with a particular gene therapy which cured her deafness and this piqued my attention.

I wasn’t born deaf but suffered sudden hearing loss at the ripe old age of 47. This took away my hearing but also my confidence and my identity.

For the last 8 years I have been adjusting to this new norm, grieving the loss of my hearing and also trying to adapt, accept and move on.

My attempts to get to know the deaf community has been difficult with most of the time me being shunned or ignored due to not knowing enough sign language or being too slow to pick things up.

I have become acquainted with others who are hard of hearing or deafened but fundamentally our experiences are all different and I’ve yet to meet someone like me who literally went from being hearing to completely deaf very suddenly.

As a result, I think the deaf community forgets about people like me. Those of you who were fortunate enough to grow up in a vibrant deaf proud community will never understand the imposter syndrome I have when in a group of deaf people – I’m the same as them but also completely different.

My ears are the same – as in that I can’t physically hear anymore. But my way of life, my identity – they’re so different as I’ve had years of living as a hearing person.

With the type of loss I’ve suffered, I’m not a candidate for a cochlear implant and I have very minimal input from a hearing aid. As such, I’m expected to adapt to this “noisy silence” for the rest of my adult life. A gene therapy of any kind would be the only thing that would give me any sense of sound again.

The first few years after I lost my hearing were horrendous. I felt lost, alone and I contemplated ending it all. Thankfully my family got me through all of those dark days, but I still do wonder what awaits me in the future.

Are there any other nasty surprises lurking out there for me? I never once thought I’d become deaf and it’s taken time to even utter the words “I’m deaf” to others too.

So please forgive me when I say that if I was offered the chance to take a therapy that would return my hearing to me, I would jump at the chance.

It doesn’t mean I wish to eradicate deaf culture, the sign language or deaf people once and for all. It simply means that – as hard as this is to admit to you all – I never expected to be deaf and I’m having a hard time being so.

I lived as a fully hearing person for 47 years and the 8 years I’ve spent being deaf have been the most challenging of all.

Yes, I now have complete understanding and empathy for the challenges and social/communication difficulties deaf people face and it’s opened my eyes to a whole new world.

But would I choose this? No, I wouldn’t.

Surely I can’t be the only person who thinks that deaf people – and particularly those who have become deaf suddenly or later in life – should have the option to restore their hearing if this is what they are used to.

I don’t think gene therapy should ever be forced on anyone but I do believe that perhaps the option should be there for those who desire it.

This blog has been written anonymously as part of the Insight series – where readers are invited to share their story or news about their interesting job with The Limping Chicken. If you have a story to share please email rebecca@rawithey.com

Image courtesy of i-stock photos.