Props to John Humphrys on the deaf issue
Doing the Tech Weekly podcast is a lot of fun; in the latest one I’ve gotten to be the interviewer of Kent Ertegrul, chief executive of Phorm, which is being hated (actively) up and down teh interwebs. So I pushed him as hard as I could on the facts of it. “Robust,” they called it in the studio.
Yet it’s still miles away from the live cut-and-thrust that John Humphrys manages seemingly so effortlessly, yet knife-sharp accurately, on the Today programme. He sees through the smokescreens.
Of course we’ve all been discussing the “choosing a deaf child” issue this week; to recap, the deaf parents of a deaf child are looking to IVF, and they want to choose to have a deaf child. The law, as it’s going to be (and already is? It’s not clear) says they can’t choose that; they can only “choose” a hearing child, or at least one which according to PIGD (pre-implantation genetic diagnosis) hasn’t got any major gene defects, which includes “genes for deafness”. (Would that be single or double? If they’re just a carrier like me, does that mean rejection? I can’t find a useful description of quite what PIGD tests for. It tooks weeks for our genetic test to come back. Do they wait that long with PIGD? How many genes do they test for?)
My wife has written rather more eloquently than I on this matter already on her blog:
I am loath to criticise them - especially given the hammering they have taken on the radio today already - but I suspect that the couple’s real resistance comes from fear; fear that they will not be able to communicate or bond with a hearing child as they have with their child who is “like them”.
However it’s only when you read the transcript with Humphries interviewing Mr Tomato Lichy (”that’s not a name, it’s a side dish” snarled someone on Comment Is Free) that you see how good Humphrys is at not getting thrown off the scent.
…JH – I don’t think anyone would say, no sensible person would say that deaf people are inferior to hearing people, but the fact is that they have a disability, a pretty serious disability – they cannot hear. Surely you have no right to impose, effectively to impose that disability on another child. The child does not belong to you. The child is a person in its own right.
TL – You say it’s a serious disability. I disagree with that. We have an interpreter here for you to be able to understand me. If I go to a deaf club or a deaf academic conference with thousands of deaf people, you would be lost; you would be the one with the disability because you can’t use sign language.
JH – Isn’t that a slightly perverse point? I, after all, don’t need somebody to sign for me. I can hear the music of Beethoven or listen to a play be Shakespeare or pop music or whatever it happens to be. You can’t, so therefore you have a disability. Surely that’s simply a fact?
TL – Well I feel sorry for you – you haven’t acquired sign language, you can’t appreciate deaf plays, you can’t appreciate deaf poetry, you can’t appreciate the joy of being part of the deaf community, the jokes that go on. I feel sorry for you.
JH – But I could learn sign language if I set myself to it. At least I assume that I could. You can’t learn to hear.
[Perfect riposte. And pause for a minute: could you have come up with that riposte, in real time, to that challenge? That’s what makes him so good.]
TL – Yes. But now it’s recognised that deaf people do have a culture, you know, a community of their own. You know, in the old days people used to say that, you know, deaf people were certainly inferior to hearing people, but recently Baroness Deech said, you know, in Parliament, “I hope that your Lordships will be pleased that the deliberate choice of an embryo that is, for example, likely to be deaf, will be prevented by clause 14.” So in saying that, the Government is saying quite clearly that deaf people are inferior to hearing people and that is should be that deaf people should never have been born. She’s basically saying that she want deaf people to be stopped from existing.
JH – Well, no, she isn’t saying that, is she? What she’s saying is that deaf people have the right to exist because they have been born. It would be utterly absurd to suggest otherwise. But there is a great difference between that and making a positive selection so that somebody is born who is not able to hear, as opposed to somebody who is able to hear.
..There’s more of it. The crux is that point of deciding for someone else that they won’t hear. That’s where it parts company with sense, in my view. It’s ever so slightly scary: a sort of eugenics gone bad.
Whether PIGD makes sense - ah, now, that’s a whole different ballgame. That takes us towards Gattaca, and that sort of strange, “choice” world. It happens already - post-partum, in countries which deem girls to be less valuable than boys, so that strangely fewer girls survive their early years than boys.
- These posts might be related (the database thinks..):
- Would you want your child to be born deaf? Some would (29 March 2006; score: 46.42%)
- What the 42-years-deaf person said about her cochlear implant (1 September 2006; score: 45.5%)
- The deaf, the Deaf and the hearing (25 August 2006; score: 45.18%)
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