So I’ve spent some of today reading up the various blogs on the story of the deaf couple below – not least because I’ve had some trackbacks from my own blog – and I wanted to add one point to my comments of yesterday.
I still don’t agree with the notion of “choosing” a deaf child, especially not for the reasons Tomato Lichy and his partner gave in the two interviews I heard. But I do back emphatically their stance on the HFE bill which would effectively not allow implantation of a deaf embryo.
I don’t believe my position is contradictory; I still believe deafness is a disability, in so much as it is the loss, or lack, of a primary sense. But for anyone to argue that my son should not have had a life because his ears don’t work like everyone else’s is frankly terrifying. (Hah! Reminds me of the old bat who once told me I would be “irresponsible” to have any more children. This from a woman who had never held a job her whole life.)
It is entirely possible that our children will have deaf children (connexin 26 is in our family’s genes); if embryos with deafness genes “will be automatically discarded“, well, that just about does for most of us. But living with deafness (our son is still profoundly deaf when he is not wearing his implant) has shown our family and friends that deafness is not a disaster – it’s not even the most interesting thing about him.
He is what he is – a marvellous mixture of deaf and hearing, a bright, impetuous, funny, happy member of our hearing family. As far more sophisticated commentators than I have argued, our increased reproductive technologies have created a moral mess, and here it is more visible than most: IVF embryo selection by its very nature means that some embryos will not be given the chance to live.
If this debate has shown nothing else, it has hopefully highlighted that deafness, or indeed the ability to hear – should not be the grounds on which that life or death decision should be made. I’m not sure I could ever play God enough to decide what grounds would be suitable – I have friends with children with CF, cerebal palsy – would our lives really be so much better without them? The very idea is offensive.
Frankly, if we have to make a choice, I’d be more in favour of pinning the tail on the petri dish – surely that would be closer to nature?