There is a Human Fertilisation and Embryology Bill going through Parliament at the moment which, among other things, has a clause which forbids couples undergoing IVF from ensuring that their children have the same disability that they do. Actually, the bill does a great deal more and is frankly, a bit of a mess. Other than the deafness question, it hasn’t much made the news although you can read a wildly biased account of what it contains here. The Catholic Church is trying to get MPs a free vote on the most contentious matters.
In a radio interview on the BBC, a deaf person who wanted a deaf child flatly denied to the incredulous presenter that deafness was a disability. The interviewer pointed out that not being able to listen to Beethoven is surely a disadvantage but the deaf person, who had been born with no hearing, denied this too. How could he miss something he had never experienced? There is a distinction to be made between people born deaf and those, like Beethoven, who lost their hearing later it their lives. The later is probably more of a disability than the former, partly because you know what you are missing and partly because you never quite learn to cope. Among deafened people, it is the loss of an ability to hear music that hurts the most. One person I know dreams music and can be quite upset that he cannot continue to listen when he awakes. As the memory of the Sanctus in Mozart’s Great Mass in C Minor fades, he knows he has lost something valuable (although perhaps it is better to have loved and lost then to have never loved at all).
So, for many of us, deliberately engineering that your child is deaf sounds horrendous. I should say that very few deaf people would want to do this, but there is a small militant minority that insist that deafness is simply a facet of who they are, like race or nationality. Deaf people use sign language which is not just a kind of miming but a fully expressive language with the complete set of tenses, parts of speech and other verbal equipment that you find in spoken English. Nor is it just a signed version of spoken language, but as different from them as, say, German from French. With the language comes culture and this is what the deaf militants want to share with their children. I think they are being selfish and putting their own interests ahead of those of their offspring.
However, just if it is wrong to reject an embryo on the grounds that it will grow into a child who can hear, it is also wrong to reject an embryo just because the resulting child is likely to be deaf. Some commentators have missed this point. Would a child thank its parents for choosing that she be deaf, they ask? Probably not, but the choice is a false one. It is not a question of the child being able to hear, but of never existing in the first place with another child with functioning ears in her place. Deafness sucks but it beats death any day.
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