I am all for parents freedom to choose and if technology can augment that choice, they are at liberty to use it in whatever way they choose. But might there be negative externalities here? The deaf are obviously entitled to a raft of benefits that hearing people are not. The question is, when all these things are factored in, do they tend to still be net contributors to the economy or are they, in fact, reliant on the hearing community’s resources in order to live in the lifestyle to which they are accustomed. If they tend to be, then their chosen lifestyle is internally unsupportable (rather like a lifestyle based on welfare dependency). This might very well not be the case but if it is, I think that would undermines the idea that parents can make this choice in a vacuum. They should not be able to make a choice to disable/dis-able their children and then demand that others support that choice financially.

I honestly don’t understand… A hearing person can still learn sign language, can’t they? So why is the putative child disadvantaged by maybe being able to hear?

Isn’t this article arguing from the wrong end of the stick? I understood the couple to be objecting to the proposed new law that would *require* the termination or de-selection of any embryos that tests showed would be deaf if carried to term. They are not trying to argue to be able to select a “designer” baby based on hearing ability, they are saying that they don’t want their deaf embryos destroyed, and for them to have a chance to become implanted as well as the hearing ones. Already having a (naturally-conceived i believe) deaf child, they are concerned as to how it would appear to her if the embryos that could lead to a deaf brother or sister for her were destroyed out of hand, simply because they would be born deaf. As far as i understand it they would be delighted with a hearing child, just as they would be delighted with a deaf child, but they do not want the knowledge that their deaf embryos weren’t given the same chance as their hearing ones, and they certainly don’t want automatic rejection of deaf embryos enshrined in law.

From the BBC article: “Now a deaf couple have turned this on its head: far from wanting a flawless child they actively want a baby which suffers the same hearing difficulties as they themselves.”

I agree it is actually complicated enough to pick apart the issue and exactly what the law will state, but I think the law intends to ban only deliberate selection of embryos with a disability, not natural or random selection of embryos with a disability.

We’ve got another stream of horrifically complex issues to navigate here…

Bender is essentially correct – the central problem here is the proposition that in selecting embryos for implantation during IVF there should be a blanket presumption against genetic ‘abnormality’.

(No wish to offend here, but terms like ‘defect’ and ‘abnormality’ are the norm in discussions of genetic screening)

For all that that raises some extremely complex ethical questions, for most people the general principle will sound reasonable because they will have a tendency to view this kind of screening through the lens of thinking about seriously debilitating, life limiting and degenerative disorders. A presumption against something like cystic fibrosis is unlikely to prove that controversial, but when it comes to deafness then it gets to be a much more difficult judgement call because there is a strong case and evidence to support their claim to be considered to be a linguistic minority with a distinct culture of its own.

(Science Bit – Much of the evidence, btw, relates to Central America – can’t recall off the top of my head exactly which country but I think it was Nicaragua or one of its’ neighbours. What happened, in a nutshell, is that social unrest in the country resulted in a total collapse in educational and other provision for deaf people for an extended period during which there was no teaching of a codified sign language like ASL or BSL at all. So what you ended up with was a complete generation of deaf people who, in the absence of external influences, ‘constructed’ their own system of sign language from scratch.

This has, naturally, got the linguists massively excited because of the uniqueness of the situation and the fact that this seems to support some of the theory surrounding the innateness of language, but it also impacts on notions of culture as well because the two are closely interrelated)

There is no easy solution to this, but perhaps the ‘best fit’ is to remove the absolute presumption, at least against deafness, but offer parents only a limited form of choice by giving them the option of taking a positive choice not to have a disabled child – or rather not to risk it as its not always so clear cut – or to leave things to random chance.

The right to choose to have deaf child is, maybe, a step to far for now, and I’ll freely admit to not having had time to think it through fully, but the right to decline to have embryos screened for possible deafness and simply take their chances the same as everyone else who has to rely on natural conception, is one that should be afforded and that we should be seeking to defend.

As Hefferman pointed out elsewhere, it isn’t so much a case of choosing to have a genetically ‘defected’ embryo over another, but rather a case of the state forcing you to reject the former. I don’t like that at all.

But I will ask people who bang on about how great it is to be disabled, and how bad it is that you won’t have a choice under the proposal, why do you not want to give the choice to your child? Why is it all about you?

Nick:

Yes, I’m wondering just how much of this is a matter of presentation issues as well – its being pitched in the MSM as parents wanting to choose to have a deaf child but I’m not at all sure that that’s what’s actually going on here,

> can’t recall off the top of my head exactly which country

It was indeed Nicaragua, at the turn of the Sandinista revolution in the late 70s/early 80s.

I’d just like to say a big thanks to everyone! First of course to Sunny for letting me guest post, and second to everyone who’s commented! I’m really enjoying reading your views.

As I’ve already said, I can see this from both sides, because they don’t see it as a disability. If they did, or if they specifically wanted a child who could hear, I would be the first person not to agree with them at all!

As Daniel Finkelstein wrote in the Times, there appears to be some confusion about what the Bill actually says (and I was one of those confused):

Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.

UKL:

The only problem is that what constitutes ‘serious’ is undefined and would only be sorted out by way of setting precedents through test cases, which is fine in law – in fact its one of the big plusses of the common law system – but leaves room for considerable confusion at the parliamentary stages

My father is a governor at a residential deaf school. He says that deaf children predominantly struggle to learn to read, because the written word is a codification of the spoken word, and if they cannot hear the spoken word and appreciate the similarities and differences between words that aids reading learning, then they are going to struggle to read.

So by deciding to have a deaf child over a hearing one, you are not just excluding them from the world of the spoken word, and music and so on, but you are likely to seriously damage their chances in the written world, too.

IMHO being deaf is a lot more serious than most hearing people (and many in the deaf community) make out, and I personally find it utterly grotesque that these deaf parents would choose to condemn their child to a world without hearing. We would not allow parents to hack a limb or two off their own child, nor gouge their eyes out, but that is exactly what we are advocating if we allow deaf parents to choose to give birth to a deaf child rather than to a hearing child.

I appreciate with disabilities that there is a fine line pre-birth between what is a defect and what is not, but again IMO this is so far over the line that there is no question that these parents are behaving utterly irresponsibly.

And it does make perfect sense to me that if those who could hear learnt Sign Language, then not being able to hear wouldn’t be a problem at all.

Even when trying to cross the road? People do not just use their ears to communicate.

If Lichy, Garfield, Hefferman and others who speak Sign Language don’t see themselves as having a disability, then do they refuse disability benefits? If they are not disabled, they have no moral claim to them.

Good p;oint ad, I was thinking the same thing. It’s something to wonder and hope, isn’t it?!

I have lost much of my hearing with age but am not completely deaf and do not sign. I work with a guy who has been deaf from birth (who of course does sign).

Just a couple of slightly tangential points. Firstly, spend a little time watching deaf people communicate – it’s about a lot more than signing – it is very tactile (watch deaf adults with a child), there is much miming and use of facial expressions. Nearly always laughter and certainly always smiles in my experience. Now watch hearing people communicate and try to imagine how it looks to a deaf person – their communication is very stilted, very impersonal (little eye-contact) undemonstrative, they appear to dislike any kind of intimacy and deal with their children largely by frightening them with noise. Hearing people must look pretty scary and I could understand if this couple felt they didn’t want a child of theirs condemned to live like hearing people (though I understand that’s not their point). My work colleague is probably the happiest person I know. The label ‘disabled’ fits him (and me) no more than it fits short, left-handed, shy or overweight people.

As Unity says defining ‘serious’ is going to be controversial but I don’t think it’s the only issue. ALS is serious by anybody’s standards – so are we saying it would be better for him and/or for us if Stephen Hawking had been aborted? I don’t know of any quotes from him, but the impression I get is that he is very much glad to be alive despite everything.

Thanks for the post Sarah,

Pete

I think this is the thin end of a wedge. What are we to make of psychopaths that want to breed more pstchopaths? That they have an entitlement?

Stepping down from that, it is seems ridiculous to me that disabled folk would want to pass their disability on to others. If you can’t hear, for instance, you can’t know the benefit of being able to hear. Same with the deaf dumb and blind kid. Sure plays a mean pin-ball. But, is that it?

Sarah, there is also the Dis in Disability. I would not want a society based on the idea that the Ability should be restricted. Despite the case you try to make.

ALS is serious by anybody’s standards – so are we saying it would be better for him and/or for us if Stephen Hawking had been aborted? I don’t know of any quotes from him, but the impression I get is that he is very much glad to be alive despite everything.

With respect this is exactly the sort of argument I dislike. No-one reasonable is saying Stephen Hawking should have been aborted. But would Stephan Hawking prefer an embryo with ALS over an embryo without it? Indeed should he have the right to pick an embyro with ALS over one without?

As I’ve said, douglas clark, if they saw themselves as having a disability, I would agree with you totally. The point is that they don’t.

sarah,

Thanks for the reply. I’d be interested to know how keen folk who lost their hearing after say, adolesence, felt about it. I would have thought that there might be a difference to be drawn between people who had lost their hearing and those that never had it in the first place. It is all well and good to be militantly pro disabled people, it is a different matter to deliberately select for a disability. It is the child after all that would have to live with it. And, as things usually go, the child will outlive the parents. Will he or she consider that carrying that disability was worth it?

Of course, if all deaf people see it as a blessing, then something weird is going on here.

I’m sure those who lose their hearing later feel differently. They would be very strange if they didn’t.

It is all well and good to be militantly pro disabled people, it is a different matter to deliberately select for a disability. It is the child after all that would have to live with it.

Exactly, well put.

Why do they want to deprive the child of the opportunity to hear?

Because they don’t see it as a disability or a problem. They say that by not hearing, their child will be part of a community that swpeaks a language.

“I believe that Disability is simply the Ability NOT to do something” – say, not be able to hear?

exactly ukliberty!

Then it seems to me you are at odds with the parents in question.

Uklliberty,

The problem with this whole idea is, to me at least, not a cultural issue, it is an evolutionary issue. If hearing were not a survival trait, it would not have happened. It would have been suppressed in favour of some other sense, say a ‘spidey’ trait. Either the ‘spidey’ trait is impossible, or our entire history of hearing was a stupid diversion from developing other traits, or it was right for us

The militant assumption is that it is not right for us. If so, why did we spend millions of years developing it?

I cannot, frankly, get my head around their arguement.

I have never said I agree with them ukliberty- only that I can see this from both sides.

sarah,

Well, what is your point of view?

I have given you mine, what’s yours?

It is frankly not good enough to quote advocates for stupidity. For they are stupid.

My point of view, honestly, is that not being able to hear is a disability. But I am amazed and inspired by people who look at life the way Sign Language speakers do. And if I think about their point of view, then both sides of this make sense to me.

sarah,

Fair enough. Making the best of things is completely admirable. And respecting those who do is completely admirable too.

If deaf people seeking fertility treatment find it necessary or advisable to select for deafness when choosing which embryos to implant, what will happen when embryo testing can detect not only the embryo’s potential to hear but its potential level of brainpower? Will fertility-clinic customers of only average intelligence (or less than average intelligence) ask the clinic to implant only those embryos whom the clinic can guarantee never to out-think their parents?