Thursday 22 March 2012

Watching My daughter, her deafness and me

Last night I sat down and watched the Rita Simons documentary that was shown on Tuesday evening.

I couldn't bring myself to watch it on the actual night, and I don't really know why that was to be honest. Perhaps because I was afraid how it would make me feel.

I had been in talks with several people connected to this programme about possibly appearing in it to give Rita an insight into what my life is like, and although I didn't really want to be on television, I do wish I could have shown Rita how amazing my life is.

And the programme? Well, it reminded me a lot of my childhood. Of my parents struggling to work out what might be best for me, what the next step was, what my future was going to be like. The constant struggle going on pretty much without my knowledge.

My parents would do amazing things to try and show me they cared about my deafness. They'd take me to deaf days where I could see the technology available to me - not quite so fancy in the 90s - and they even fought to get me on a waiting list to see a geneticist to find out more about my hearing loss.

At the former, I behaved atrociously. I didn't want to interact or find out more about any of it. I just wanted to be me. And the latter? Well the day of my appointment took so long to come around that by that time I could drive. I actively chose to miss my appointment. I went to school instead. I sat there all day and pondered at what was motivating me to act in such a defiant way when all my parents were doing was trying to help.

To this day I still don't know.

And was there a turning point?

Not really. I think I just grew up. You see, it's natural to be defiant as a kid, to do the opposite of what your parents want you to do. But I think because a lot of my defiance centred around something different - my deafness - it seemed like I was acting up about my deafness not just because I was a kid. If anything my deafness saved me from being defiant about other stuff because I was far to busy being defiant about it.

The emotion that I felt while watching the TV programme last night was raw and stemmed from far back in my childhood. The body language of Maiya at her hearing test, the look on Rita's face when she was trying to be upbeat about it - it gave me so many flashbacks.

But what I wasn't expecting was for the panic about cochlear implants to return.

Regular readers will know I had a bit of a wobble about whether I should even consider having one last year and in the end I decided it wasn't for me.

And this programme cemented that further when it was demonstrated how music sounded with one.

You see, the only reason I'd have a cochlear implant is so that I could hear music again. So I could play my violin. And if I don't get that back and actually it sounds completely different, then it removes all point of me having it.

But that's just me.

And that's what I said to the researcher of the programme when he asked me a generic question about deaf people. I felt it was incredibly important that he didn't see me as a spokesperson for anyone other than Deafinitely Girly. I am me, my experience of deafness is mine and my experience of hearing is mine.

I like my world while others might hate it and that's OK.

Rita finished last night by saying that she didn't understand why if given the option to hear, you wouldn't take it... and while I can see her point, I can't agree with it. It's so much bigger than just hearing the raw sound. It's about the quality and the quantity that you get. I'd rather not have any chocolate than a shitty bar of fake sugary chocolate that coated my teeth and tasted of nothing. And in the same way, I'd rather stick with things the way they are right now than risk creating a world that sounded so alien and so tuneless that I was stuck in an irreversible world of panic.

I'd rather keep my world, even if it's going to get quieter, even if I hear a little bit less of my flute every time I pick it up. But it's my world, no one else has to live in it. And that's why I'd never ever tell Rita Simons what I think is best for her child, because if Maiya is anything like me, then she'll probably do that herself.


Tea cosy said...

My aids have just been turned down because in order to hear children they wre making the rest of the sounds unbearable! As you say some things may go but that is simply the price for a reasonable quality of life in other areas. Little people are now pretty much gobbledygook but my lip reading is improving and my friends translate! Glad your world is good. X

A said...

Great blog post, thanks for sharing. Pretty much sums up how I feel about CIs, for people with our sort of level of hearing loss anyway. It's a difficult one though, and one that the deaf community seem to have difficulty talking about openly and honestly...

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