Thursday, March 13, 2008

Deafness and the availability of options

I’ve been thinking more during the week about the deaf couple who want to use IVF to select a deaf baby (they have already had one naturally). The father, Tomato Lichy, was interviewed by John Humphrys on Monday. Here’s a chunk of it:

JH: I don't think anybody 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 effectively impose that disability on another child? The child doesn't 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're 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 by 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, because 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.
TL: Yes, but now it's recognised that deaf people do have a culture, a community of their own. You know, in the old days people used to say that deaf people were certainly inferior to hearing people, but recently Baroness Deech said 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 it should be that deaf people should never have been born. She's basically saying that she wants 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.
TL: Again, we're talking about different perspectives about what disability means. I don't see myself as disabled. You're not deaf, but you're labelling me as disabled. I could say "Oh, well, black people are disabled. Deaf people have to struggle to achieve equal rights, and gay people could be regarded as being disabled - let's put them into hospitals and make sure that they're cured, make sure they're not born". That's not the case - we do accept that black people and gay people are equal. Why can't you do the same with deaf people?
JH: But we do. I accept entirely that you are equal to me, but I would not presume - and many people I think listening to this programme would not presume - to make a decision on behalf of somebody else. That's the crucial aspect here, isn't it? On behalf of somebody else, an unborn child, that they should have what I said was a disability, and I repeat that.
TL: But that seems to be somewhat contradictory, because you say that deaf people are equal, but then you say, well, it's better not to be born deaf. That seems a contradictory statement. Really, it's up to us as deaf people to decide whether we're disabled or not.

Two things strike me from this: first, the words ‘disabled’ and ‘disability’ are of absolutely no use here; they are loaded and contentious, generating more heat than light. Second, Mr Lichy has some fair points but his argument evaporates round about the words “yes, but” in his third reply here. Pretty much everything that follows is irrelevant to his case.

His remark that “you say that deaf people are equal, but then you say, well, it's better not to be born deaf” is contradictory illustrates the key failure of logic.

It seems that in fighting the prejudice ‘deaf people cannot do certain things, so they are inferior human beings’, there’s been more focus on rejecting the premise than on rejecting the implication. The premise has certainly been exaggerated, but the implication is the really nasty bit: ability does not determine personal worth. Nor does misfortune.

It’s better not to be born with sickle-cell anaemia. It’s better not to lose your leg in an accident. It’s better not to develop arthritis. But being in these situations – or being born deaf – does not mean that you have less than equal worth as a human being.

It does, though, restrict your options.

It’s useful to be able to speak Spanish. This is a skill that will reduce your chances of finding yourself in a situation where you can’t communicate. But if you can’t speak Spanish, that needn’t reflect badly on you: maybe you’ve not had the chance to learn. Or maybe you think the benefits aren’t worth the effort and expense; fair enough, that’s your call.

If you can’t speak Spanish, it’s still useful to be able to learn – even if you currently don’t want to. Facing a closed door is better than facing a locked door. But if you can’t learn Spanish, that needn’t reflect badly on you either: maybe you’re just no good at languages. That’s unfortunate, but you shouldn’t be blamed nor sneered at for that.

So, by analogy: it’s useful to be able to use sign language. This is a skill that will reduce your chances of finding yourself in a situation whereyou can’t communicate. And if you don’t know sign language, it’s useful to be able to learn it – although if you can’t get you head round it, that’s unfortunate – but you shouldn’t be blamed nor sneered at for it.

It’s also useful to be able to hear. This is a skill that will reduce your chances of finding yourself in a situation where you can’t communicate (among other things). And if you can’t hear… well, the category of people who can’t hear but can develop the ability to is limited to cases of temporary deafness (a far more trivial issue) and deaf people who may choose to have cochlear implants – although these are of variable efficacy and not risk-free. So if you permanently can’t hear, that doesn’t reflect badly on you: you shouldn’t be blamed nor sneered at for it.

Being able to hear doesn’t render you unable to use or learn sign language; but being permanently deaf does of necessity restrict your options for communicating. The asymmetry is undeniable. No amount of well-designed infrastructure or accommodating social attitudes will eliminate situations in which being able to hear would be useful.

Deliberately intending that your child should lack certain communicative options can’t be a good idea. Acknowledging that should pose no threat to your cultural identity and self-confidence.


Cassilis said...

Danny F in the Times on Wednesday addressed the same issues and the alarming fact that this 'denial of disability' angle is official policy of some big disability groups:

"the mission statement of the Royal Association for Deaf People (patron, the Queen; president, the Archbishop of Canterbury) states: “Deaf people are only ‘disabled' by the effects of discrimination and exclusion.” Meanwhile, the British Deaf Association and the Royal National Institute for Deaf and Hard of Hearing People strongly support the right of deaf people deliberately to select a deaf child"

...and also your point around the distinction between temporary and permanent disability:

"Mr Lichy has confused a serious long-term physical disability with a temporary inability. Mr Humphrys can learn sign language, should he wish, while Mr Lichy cannot, sadly, learn hearing"

m said...

I am curious if this means that the government is respecting the rights of IVF children over other children brought into this world? Or do the choices available through IVF merely override that?

I’ve been part of discussions about the Katie Trebing story, and a lot of the ethical decisions based on that choice revolved around saving Katie’s life and also that it was okay to pick the perfect match above the healthiest embryo, because one had to consider what was best for the entire family. In this case, a deaf couple with a deaf child, is that not to be considered? Related to that, it’s been said that families who actively screen out genetic disabilities have that right because they’ve lived with them and realize how difficult they can be, should that not be factored in here?

(Last sentence above concerns the information found here; it also is a link to further Katie Trebing information)

Personally, I really like the link above as it addresses some things I struggle with myself when these cases make it into the public domain. (Am I just participating in fear-mongering by trying to think of the future and where it could go wrong, etc.)

I realize that the majority of readers are probably in the UK and have the regulatory board, but it may still be an interesting read to some (no promises). I am happy with the government’s stance on this case and also appreciated the article Cassilis posted.

m said...

Sorry, I should point out my thinking was off on a tangent, not just related to the HFE bill. I was so distracted by the reference of Steven Pinker without a glorious photo of his hair (I thought there was a bill about this?).

Tom Freeman said...

I like Danny F’s piece. Also via him is Clodagh Corbet’s perspective (which ties in with a bit of what you were saying, M).

The Katie Trebing ‘saviour sibling’ sort of case is interesting: “it was okay to pick the perfect match above the healthiest embryo, because one had to consider what was best for the entire family”.

I guess here the ‘wider’ benefit here is still a health benefit rather than making the family feel more of a homogenous unit. And I’d imagine that selecting the non-healthiest embryos wouldn’t go so far as selecting one with predisposition to some serious condition?

Tom Freeman said...

Here’s an idle thought-experiment to kick around: some sci-fi scenario, probably involving radiation but never mind the details, leads to 99% of people being born profoundly deaf; the remaining 1% have normal (or what used to be normal) hearing. While there’s a genetic link, potentially two deaf parents could have a hearing child and vice versa.

What would society look like after a couple of generations, once this state of affairs had become accepted as the norm? How would the minority and the majority deal with their respective social positions? How culturally cohesive would either group be? How would each view the condition of the other, and their own condition?

(I imagine there’s probably some short story somewhere that’s already done this...)

m said...

Yes, it still is a health benefit, I think the problem I tend to have with all of these situations is that I’m looking at it more psychologically. I don’t think that perspective is entirely unfounded here, especially with this particular disability. And with the Trebing case, it still is a health benefit only if one is to consider the health of others and not just the actual child’s/embryo’s (which I am fine with, just elaborating on my shoddy thinking).

I don’t really know how far choosing embryos would go, typically I assume the best but consider the worst. I didn’t realize how extensive some of the screening is or that this has already been done in America , a deaf couple actively creating a deaf child. I’d admit to sheer ignorance but I either have Alzheimer's or I was a kid back then?

Concerning the thought experiment…I imagine it would eventually be as culturally cohesive as the situation now, with a separate ‘hearing culture’ and so on?

If it involves radiation and the impact on future generations, deformities could limit sign language. Does anyone remember the film ‘Threads’ where the spoken language ended up being really broken down? I suppose both groups may have to redefine their communication skills?

(Sorry, were we to assume that the only thing the radiation caused was deafness?)

Anonymous said...

You miss one crucial point. Being able to speak Spanish means more if you live in Spain rather than somewhere else. Belonging to Deaf culture is no different. Sure, having a hearing impairment is not necessary for a child to learn Sign Language - but you can imagine the Deaf parents seeing it as a guarantee that at least society would support that happening.

m said...

I don't know (anything really) but I would think having the chance to be bilingual would be a greater asset, especially where the deaf culture is not really 'closed off', but interacts with others (happily); I believe Tom is saying that as well. Plus, the child sponge is meant to pick up a new language far more easily. The affinity with the parents and community during the child’s first years may very well stay with that child for life and I imagine the community would embrace any child (their infantile characteristics ensure that, right?).

This topic is so complex that I really don’t see how we can reach a concise, succinct answer. I suppose I’m caught up in it because I’m wondering if, in the future, will I be cheating my child by not using IVF and genetic screening? I'm quite wary of it, but I realize I haven't been in the position of these parents. With that, my vicious circle of incoherent responses must stop.

Hopefully the couple will add a 4th to their family soon. They still have options, to some degree, if they are that determined. In any case, I wish them the best.

Tom Freeman said...


Your point's right, but I was aware of it - I made it more explicitly in my earlier post (link at the start of this one).

I confess I have no idea whether there are fewer public resources available for hearing children of deaf parents (as opposed to deaf children) to learn BSL. I would hope not: being able to communicate with your family is such an essential part of life.

Indeed, maybe the question should also be about what support there is for such children to learn spoken English if they can't learn it from their parents, as most children do. Communicating to a broader audience is pretty important too.

I guess there's a (limited) analogy with the children of immigrant parents, where it's good for the children to have the chance to learn both the language of their family/cultural background, and that of the wider society around them.