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: 46.8%)
- What the 42-years-deaf person said about her cochlear implant (1 September 2006; score: 45.87%)
- The deaf, the Deaf and the hearing (25 August 2006; score: 45.36%)
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March 12th, 2008 at 12:20 am
[…] Props to John Humphries on the deaf issue […]
March 12th, 2008 at 12:22 am
Actually no-one is choosing that an embryo should be deaf or not. The embryo is *already* deaf, but the government is trying to pass a law that says that *already* deaf embryo should never be allowed to survive. Since I was born deaf, the government is trying to make a statement I would never be allowed to live. (My quality of life is fine, thanks).
Deaf people are not generally advocating selection …. the government is. I don’t agree with genetic engineering either.
For the purposes of PGD 14(4)(9) says that only hearing embryos are allowed to survive, and deaf embryos must be discarded. It also bans deaf gene carriers in law from being donors. Here the government is:
- interfering with individual reproductive liberty
- making a statement who is permitted to reproduce
- which class of persons are permitted to survive
This is a form of eugenics, and cannot be described as anything else. Selection for the purposes of traits or gender is banned, yet the government is seeking to make deaf people a special case.
As someone who is legally trained, I can see a number of other flaws (unworkable) in this clause and its almost as if parliament is setting up persons against persons. What if one gene was diagnosed as deaf and the other with Alzheimer’s Disease; which is the worse condition and should take precedence in a right to live, etc? There is not one single person on this planet who has perfect genes, and many factors determine how these mutate.
March 12th, 2008 at 9:29 am
[…] Minister Gordon Brown’s grilling by senior MPs on the Commons liaison committee. (40 clicks) Props to John Humphries on the deaf issueDoing the Tech Weekly podcast is a lot of fun; in the lates… More March GiveawaysThis is a write up that Jennifer at Tree Hugging Family, and Offbeat Homes put […]
March 12th, 2008 at 10:30 am
Alison = if you were born via IVF, then yes, I guess the government *is* saying that you shouldn’t be here. Which I think we can agree is a scary and unwelcome thing to be told.
Looking again at the Today transcript, Humphries in his introduction says They may have to have IVF, but they don’t want to have to choose a hearing embryo over a deaf one.
That’s rather different from how it’s being presented up and down the country - which is that they’re *choosing* a deaf embryo over a hearing one. They seem, on this, to be saying “just implant one, we don’t mind which”. (If I’m wrong, please correct me.) That’s defensible.
Equally, the government position seems to be that IVF is such a hassle, you should choose an embryo which has the best possible chance of survival *and* that will be the least hassle to the state. That way, yes, lies eugenics (even in the sense of those cast aside in favour of others) and the world of Gattaca (which was a sort of post-partum genetic diagnosis - PPGD, if you like).
You’re right - there are legal implications that don’t make sense. The Alzheimer’s one is just the start. Give genomics a few years and it’ll be predicting all sorts. What if you had a child with a gene for sickle-cell anaemia? A single such gene is useful - it confers some protection against malaria (which might be a survival trait in a few decades, given global warming). Double helping, not useful.
What a mess.
March 12th, 2008 at 11:59 am
Surely it’s a common-sense issue? I heard this interview just after I’d been telling my kids not to wear ipods as they walk along the road - they’ll get run over! It’s morally wrong to deny another human being a sense and incredibly selfish to create someone in their own image. JH was pretty much arguing against a brick wall - the interviewee said that was right as deaf organisations supported him (we don’t know that they actually do). If they did, they’ve no more right than the RAC or AA to play God.
March 25th, 2008 at 2:18 am
Leaving aside the deaf child issue, I’m actually not as impressed with JH as you are. The times I’ve listened to the Today show (few and far between; it’s *early*) I’ve found him incredibly annoying. Yes, there’s value in tenaciously pushing people to answer the question you’re asking, but he interrupts and overrides his interviewees so often that I start wanting to scream at him to let them *speak* long enough to finish a sentence.
wg
April 21st, 2008 at 2:47 pm
May I ask what your employer’s policy is towards using behavioural Targeting software given that they have been using Audience Search from Revenue Science since 2005?
April 21st, 2008 at 4:33 pm
@bopper: I think you should ask my employer - they’re in the phone book. 020 7278 2332. Ask for a spokesman for Guardian News and Media.
If you’re trying to make this about Phorm, same answer - this is my blog, not the Guardian’s, and I don’t speak for them.
April 21st, 2008 at 5:33 pm
ooh touchy. Given that the blog mentions Phorm I was under the impression it was valid to ask a question regardng behavioural advertising. I’ll give your employer a call. I didn’t mention Phorm 1st. You did. Remember? “At the Guardian: Nuclear power! Phorm’s bad publicity, tiny speakers and another podcast.” Forgive me I thought that given that you have been such an outspoken commentator on Behavioural Targeting software then you may be able to comment. My mistake.
April 21st, 2008 at 9:01 pm
@Big Bopper - no, I’m telling you where to find out my employer’s policy. Clue: it’s not here.
And it might have helped if you’d made the comment on a post that was vaguely relevant.
Plus: you hinted at Phorm. “Behavioural targeting”, hmm, what does that sound like? Can’t be finance, can’t be cochlear implants, isn’t nuclear power - hang on, I’ve got it!
I haven’t been an outspoken commentator on behavioural targeting software. Show me a few links where I’ve been a commentator - as opposed to reporter - on it. Please. I think you owe us that, at least. (The difference: commentators say things are good or bad; reporters say that there’s disagreement about it.)
April 22nd, 2008 at 6:04 pm
What an arrogant and patronising reply! If you want to be pedantic about it then so be it.
Definition of Commentator: A broadcaster or writer who reports and analyzes events in the news. One who writes or delivers a commentary or commentaries.
Your reaction speaks volumes about your attitude. I asked a genuine question which you have over reacted to and refused to reply to. BTW I rang your telephone number and was put through to a voicemail. Yeah thanks for that. As for posting the question on the wrong thread I would be glad to if you would be so kind to point me to one. “Behavioural targeting” is a very big subject that doesn’t just mean Phorm as you seem to think. I specifically asked with regard to The Guardian’s relationship with Revenue Science. I made no mention of Phorm. You did. I only want to know what behavioural targeting activity is already going on with The Guardian. And given that you have “REPORTED” on the subject I thought you might be able to give me an insight into that. “Please. I think you owe us that, at least”.
April 22nd, 2008 at 11:16 pm
@Big Bopper: how appropriate that we’re in the comments to a post about John Humphrys. If you think it’s pedantic to want people to be accurate, then I’m pedantic. It comes with the territory. Or profession.
My attitude is that I’m not a spokesman for the Guardian, and they do things on the commercial side I’m completely unaware of. I’ve never heard of Revenue Science. If you want to ask them, go ahead. I can’t help it if they’re on voicemail. (Welcome to the world of journalism, where not everyone you want is on the end of a phone when you want.)
Notice you didn’t post the links like I suggested. So that would make me a reporter, not a commentator on this topic, I guess.
I didn’t say behavioural targeting is “only” about Phorm. You mentioned Revenue Science. I couldn’t see any connection to any other topic I’ve ever written about - but Phorm gets a lot of attention, so it seemed a reasonable conclusion on my part that you were commenting here for that reason. Or are you putting impatient comments on every Guardian person’s blog you can find?
Once again: I can’t tell you what behavioural targeting is being done by the commercial side at the Guardian, because I don’t know - in the same way that they don’t know what’s going to be in the paper, because I don’t tell them (and they don’t ask). Call it Chinese walls or whatever.
But please, I think it would make sense to stop asking me something that I’ve explained twice before I can’t supply.
April 23rd, 2008 at 4:30 pm
I thank you for your more concilitory tone in your reply. To clarify, I don’t think it is pedantic “to want people to be accurate” (I think it prudent to avoid the contradiction in terms of using “accuracy” and “profession” in the context of “journalism” as we could be here for evermore!) I think it is pedantic for someone to try and make a distinction between what is a “commentator” and what is a “reporter” when it was irrelevant to the question. I think this was made clear in my last posting by giving you the definiton of what a commentator is. I am genuinely worried about the creep of “big brother” and behavioural targeting is a big part of that creep. I thought you might be able to help. Finally in answer to your question “are you putting impatient comments on every Guardian person’s blog you can find?” no I am not. Only those who have actually written about “behavioural targeting”. As you wish I shall stop asking you to explain something that you have explained in your last posting (not twice as you suggest). I thank you for taking the time to reply to my enquiry and explain your authority on the subject.
April 23rd, 2008 at 8:19 pm
@13: “I think it prudent to avoid the contradiction in terms of using “accuracy” and “profession” in the context of “journalism” as we could be here for evermore!”
The audience awaits details of the six-sigma job you do. Can’t be software, can’t be banking, can’t be .. no, you’ll have to clue us in.
I told you in no.8 and 10 that you should ask the Guardian officially, not me here. That seems to me like explaining where you could find my employer’s policy, and it seems like answering it twice.
Fascinated now to know what this error-free line of work you’re in is. How do the deadlines compare with journalism? And the access to possibly reliable sources?