The Right To Remain Silent

You may well have caught some of the press lately about whether or not Deaf people should have the right to decide to have a Deaf child over a hearing child. As always, the media just loves stories like this, running with the theme that the Deaf Community is a terrorist organisation set out to deny the entire world of the sounds of birdsong or Bach. Obviously, that much is true and the Deaf Community will be visiting a maternity ward near you with a set of Brittany 2.5 mm sock needles to ensure that the next generation of young Britons will never have to use a sign language interpreter to communicate with the majority of their peers, but there'll be a few elderly relics who still use those defunct bits of gristle on the side of their heads and the brutal medium or words that are vomited air, like a dog's yapping and not words that are sculpted from the imagination, beautifully crafted to linger in the light of the imagination.

Such is the dream of every Deaf terrorist.

Ok, so I'm kidding about the knitting needles bit - crochet hooks might be better suited to the job.

The whole eugenics thing has kinda kicked off a bit strangely from both sides - there've been Deaf people going around saying that the government is planning to have Deaf people sterilised to save on interpreter costs in 20 years time and there've been people saying that Deaf people routinely drown their own children if they cry when you shout in their ear.

Clearly both sides are exactly right. As you can see, this makes the issue terribly complicated, so let's put the facts to one side. Let's ignore that the Deaf couple on TV this morning were saying that they're in support of screening for serious disabilities that would diminish the quality of life of their baby, but they object to the idea that deafness is categorised as being a serious disability (personally, my experience of Deaf people is that it's quite a funny disability sometimes) and let's ignore that what the government is talking about is that if you have five embryos and two of them have an inherited disability they're saying you shouldn't be allowed to choose those embryos over "healthy" ones and instead let's focus on the crazy people inflicting Deafness on their tiny innocent babies.

I think Paula Garfield made a good point on BBC breakfast today, saying that she's not wanting to create or design a deaf baby but if a deaf gene is already present in the embryos available for use to impregnate her, then she wouldn't want doctors to be saying to her that the embryos who carry genes that may cause the child to be deaf to be rejected because if you're saying that a deaf embryo isn't good enough to be used for fertilisation, what message would that be giving to her first child who is deaf? That she has less right to life than her specially-selected younger new sibling?

A note on capitalisation: I'm using "deaf" to mean the condition of not being able to hear and "Deaf" to mean the condition of being someone who is a part of the Deaf community - likely to be using sign language as a preferred mode of communication, likely to go to Deaf events where it takes 4 hours to say goodbye and likely to want to murder anyone who mentions how tragic it would be not to be able to be woken in the morning by the sound of birds singing or a bus going past outside.

Clearly, I'm not likely to be going for fertility treatment any time soon - Jonatron and I are trying natural methods for getting him or me pregnant before we consider IVF, but I think there's a really odd cluster of thoughts here. First off, I'm confused when it became a right to be able to have a child in the first place - as a man in a couple unlikely to get pregnant anyway I find it baffling when I hear people talking as though it's the state's responsibility to provide them with a pregnancy when to me, it just seems like some people can't have kids and there's all kinds of kids who'd love to be adopted into a caring home.

That I can understand a little better, though, than saying that we should stop embryos from being used if they might (and it's only might) mean that the baby would at some point in their life have some kind of hearing loss. Deafness does cause a certain degree of risk to health, but not a great one - some deaf people have rubbish balance, but there's plenty of clumsy people generally and that's not enough to justify denying life to the less musical or the less dexterous. The main disadvantage is a social one - as with many disabilities, but perhaps especially with deafness, if the communication needs of deaf people were met, they really wouldn't need to be thought of as disabled at all. So the IVF people are against the selection of embryos that might suffer a disadvantage socially? Where would this lead? Discouraging parents from having a baby who might be black, gay or obsessed with Broadway musicals from the 1950s? The health authority are saying in the new bill that if all five embryos put forward for use carry such a gene, then they'll not deny the parents the choice to have a child and there's still the option to not screen at all, but then that means parents who don't mind a deaf baby are at higher risk of having a baby whose life is cut short or made painful because of a serious congenital condition.

Anyhoo - that's enough from me on this - I could go off on one about some interesting developments in the world of sign language interpreting but I think that alone would be enough for most parents to strange a deaf baby rather than have to get involved in the politics of it all.

Links: Grumpy Old Deafies