Worlds Apart?

On Tuesday night, I watched a programme with my Mum and Sister about a celebrity trying to find out how to bring up her deaf daughter and what would be the best way to do so (Rita Simons: My daughter, deafness and me). In many ways, I felt that this could be a good way to show the issues that parents of deaf children face when they first discover their child is deaf, and what support is available for deaf children. I settled down expecting to find a programme that resonated with me and my experiences as a deaf child of hearing parents.

The first few moments of the programme were interesting – we found out that Rita’s daughter had a progressive hearing loss, which is what my sister and I have – it may or may not worsen over time. I understood that the parents would be concerned about this, and what this would mean for their daughter, Maiya. Our Mum has always said that finding out that Sarah and I were deaf was devastating for her and my Dad, especially as she was confused and didn’t know what this would mean for us or how things would progress from there. Luckily, they discovered the support of the NLDCS (North London Deaf Children’s Society), the NDCS (National Deaf Children’s Society) and other parents of deaf children.

It made a huge difference too that our doctors at our hospital were fantastic – when my Mum wanted to find out about cochlear implantation, the doctor gave her the facts – it would mean I would lose all my residual hearing, which at the time was far better than I have now – and would still be deaf because obviously you can’t have the implant on all the time, like in the night or when you have a shower or when you go swimming, etc. Most importantly, he said that it would only be an option if I was seriously struggling even with support.

With Maiya, I didn’t really see any signs of that support at the school she was at – maybe it just wasn’t mentioned, but it seemed that she was, for all intents and purposes, not getting any extra support. Although I hated it when I was young, I did have support out of primary school classes from a teacher of the deaf. They went through things with me to make sure I was progressing in my education and that I wasn’t getting left behind. I went to a mainstream primary school – although maybe not ideal as I did struggle a lot – but the classes were small and I stayed with the same people all the way up to Year 6. Maybe here I should mention that I read a lot. And I do mean a lot.

There were things that I hated about school – but then all kids do. Obviously the playground politics with girls (best friend politics, bullying etc), and not always being able to understand what was going on. For the most part though, I got through it. It didn’t feel like I was missing out at all – outside school I had deaf friends and a deaf sister, people I could relate to experience wise at NLDCS parties and outings. I had Chickenshed, an inclusive theatre company, which I joined when I was 7 years old, and stayed with until I was 18.

I grew up with the understanding that deafness doesn’t make you lack anything. It isn’t something to be sorry about. It has given me a completely different outlook on life than if I were hearing. Everyone sees the world differently, and I understand that because I’m deaf, and have been part of inclusive practice at Chickenshed. Most of all, I grew up with the feeling that I didn’t need ‘fixing’, as my sister has so aptly put it in her blog post. Deaf people don’t need fixing because there is nothing wrong with us. I don’t see myself as having a medicalized condition that means I’m broken.

I am a whole person – imperfect but proud of all that I’ve been through. I use my other senses to access the world. I use my sight, smell and touch. I can hear things with my hearing aids – not as much as some, perhaps, but enough so that I can hear music and a spectrum of sounds (not very high or low frequencies though). I’m eligible for a cochlear implant but I’m not going to take that opportunity because I’d rather wait until the medical establishment come up with something way better – hairs that can be implanted into the actual cochlea, for example. The programme was essentially an advert for cochlear implants – as if they are the only right solution for a deaf child. As if there is no other way of bringing up a deaf child, apart from cochlear implants or the Deaf community.

The point is, the programme threw up a lot of things that made me really angry. I felt that it was the same old cliché of pitting cochlea implantation against the Deaf community all over again. It is tired and boring and doesn’t show it how it really is. It didn’t show deaf role models who are oral but know sign language, and aren’t as active in the Deaf community. It didn’t show that there are deaf people who have more nuanced views about cochlear implantation. For example, what about people with implants who use BSL? I found it problematic that Rita felt so put off by the Deaf community, by signing and by allowing her daughter to mix with other deaf kids. I think what a lot of hearing parents don’t initially understand is that there needs to be a balance – they want the best for their child but sometimes it is important for deaf kids to mix with other deaf kids because its about relating to others, about getting a chance to relax and not have to struggle all the time. Every deaf child has different needs.

What I really hated about this programme was that you could see Rita recoiling from the Deaf people she met due to some extreme views some of them held. One of the people there was trying to explain her own views of cochlear implantation, and said that implanting a young child with a cochlear implant was ‘abuse’. I think that was the moment she backtracked and completely went off the idea of introducing her child to BSL and deaf culture and identity (understandable, it was a very extreme view). I thought that was a great shame because that was just one person’s view of cochlear implants, and doesn’t reflect the views of the entire Deaf community!

In recent years, my own identity as a deaf person has strengthened and its because I’ve learnt BSL Stage 2 and was taught by a strong Deaf woman who made me feel proud to be deaf. That pride comes from having been through so much, from learning such an interesting language, from that recognition you feel when you connect with another deaf person. Its hard to explain, its a bit like meeting a very good friend you haven’t met for a long time and you find you have so much to tell each other you don’t know where to begin! Its like when someone you’ve never met before shares an unique experience with you that you just happen to share.

The thing is, like my sister, I’m part of both worlds. I appreciate the hearing world, even though a lot of the time, it doesn’t include me. I appreciate the Deaf world – sign song, sign theatre, culture and BSL. It isn’t as though I’m shut off from things – I just access them in different ways. Programmes like this just make it harder for hearing people to understand this. It makes people think that you have to be sorry for deaf people, that they all need to be ‘cured’ so that their ‘lives will be better’. My life is pretty damn good right now, thank you very much. By anyone’s standards, myself and the other deaf people I know have achieved many things and haven’t been deprived from all the beautiful things life has to offer.

It speaks volumes that I even have to say this. It speaks volumes that in the 21st Century, we are still dealing with ignorance around so many different things. That I still have to explain to people that they don’t need to feel sorry for me, or that being deaf doesn’t mean I’m dumb, or that I can’t hear a thing. It’s enough to drive a person crazy! My deafness is as much a part of me as anything else. It just is. I wouldn’t be here today, writing for the Hearing Times, I wouldn’t have met so many interesting people, I wouldn’t have met my partner or had so many incredible experiences. I know it’s a cliché, but it’s not something I regret or would take back. It’s just different.

When it comes to languages, there can be no ghettos, no ostracism: all languages are valid in the pursuit of life. – Emmanuelle Laborit, The Cry of the Gull.

Image © Sarah Ward (using my Camera…)