Sunday, March 09, 2008

Deafness, IVF and cultural freedom

I don’t really write about either disability or human fertilisation much at all, so I’m very alert to the possibility of putting my foot in it here. Informed criticism will be even more welcome than usual.

The Observer carries a story today about two deaf parents with a deaf child. The mother is in her early 40s now, and so they may well need IVF to have another child.

Now the couple are hoping to have a second child, one they also wish to be deaf - and that desire has brought them into a sharp confrontation with Parliament. The government's Human Fertilisation and Embryology (HFE) bill, scheduled to go through the Commons this spring, will block any attempt by couples… to use modern medical techniques to ensure their children are deaf.

There is nothing even remotely wrong, or diminishing of personal worth, with being deaf. Infinitely better to live in a society in which deaf people love the way they are rather than being made to feel sub-standard (alas, there’s still far too much of the latter). As the father says:

Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in.

I agree that it makes no sense to be proud of “medical aspects” of one’s life: the hand you’re dealt counts far less than how you play it. I also don’t like the lazy, dismissive way that ‘disability’ is often understood – as mere bodily defect. A fully fleshed-out concept of disability has to be defined relative to a given aim, a method, a physical situation and a social context.

The question that brings this couple into conflict with the HFE bill is whether they should be allowed to stack the deck in favour of a new child’s deafness.

The father says:

It is a cornerstone of modern society and law that deaf and hearing people have equal rights. If hearing people were to have the right to throw away a deaf embryo, then we as deaf people should also have the right to throw away a hearing embryo.

I don’t think this contrast is properly set up, though. Hearing and deaf people, under this bill, would equally have the right to prefer hearing embryos to deaf ones; neither hearing nor deaf people would have the right to prefer deaf embryos to hearing ones. The people here have the same rights – unless, of course, you take the view that all embryos are people with human rights. But such a view would play havoc with most existing and proposed law in this area, and I presume it’s not being advanced here.

But there is a double standard in what any parents – hearing or deaf – can favour in IVF. Why? Once we accept that deafness doesn’t impair worth, why not allow parents to pick either way? (There’s another argument that parents shouldn’t be allowed to pick at all; I won’t address that here.)

Think back to the comment – which I think is representative of many deaf people’s opinion – about taking pride in “the language we use and the community we live in”. But why can a hearing child not grow up to become part of that linguistic community? Surely BSL-spoken English bilinguals don’t get cast out by their own parents?

That last remark is somewhat flippant and rhetorical, I confess. It is a very obvious practical fact that being hearing reduces one’s motive to learn sign language. If one has deaf parents, it can also introduce a tension to do with the forms of language available to learn, and how they might be taught. There’s significant scope for difficulty in communication within the family, which is no small concern.

So, while being born deaf presents a certain set of challenges, being born hearing to deaf parents presents another set: we shouldn’t presume the benefits are all on one side and the costs all on the other.

But. I still can’t conceive that the difficulties of growing up hearing with deaf parents match those of growing up deaf. However we shape society so that deaf people are empowered – which we must – there is a real disparity in the opportunities lost in these two situations. As I type, I’m listening to Renée Fleming sing Verdi. I’m certainly not proud that I can do so, but I am glad of it. Other people can’t do this, and that’s nothing to be held against them, but I don’t believe such a condition should be positively sought on someone else’s behalf.

Deaf culture is far richer than most hearing people appreciate, but surely its survival does not depend on the deliberate antenatal recruitment of members via selective IVF? And surely membership is not exclusive – being hearing doesn’t prevent you from enjoying, say, a play in BSL – nor even from writing or acting in one. As Amartya Sen puts it, none of us is ‘monocultural’; and:

The importance of cultural freedom, central to the dignity of all people, must be distinguished from the celebration and championing of every form of cultural inheritance, irrespective of whether the people involved would choose those particular practices given the opportunity of critical scrutiny, and given an adequate knowledge of other options and of the choices that actually exist in the society in which they live.

I’m very suspicious of a cultural group that maintains itself by conscription or by blocking the exit. I hope that such an attitude is in the minority among deaf people.

The Observer piece opens by noting that the deaf couple, of course, love their deaf daughter. Would they have loved her any less had she been hearing? I like to believe that they would not.


Matt M said...

Once we accept that deafness doesn’t impair worth, why not allow parents to pick either way?

I'm not sure it should be an issue of worth. I have equal worth to someone better at maths than I am, but the simple fact is that the person with better maths skills is better equipped to take advantage of opportunities in life. Deafness is no different - it's an undeniable limitation on someone's abilities. My gran was deaf (due to illness as a child), and while it didn't diminish her worth (whatever that means) in any way it did make things more difficult for her than if she'd been able to hear.

Unless someone can prove to me that the pros of inclusion in the "deaf community" outweigh the cons of not being able to hear I can't see what justification anyone could have for deliberately taking away a child's ability to hear.

Anonymous said...

Glad to see your opinion on this, it is a difficult topic. I know you weren’t going to address it, but I’ve found that people seem to be in favor of genetic screening when it’s done to save a life but not when it’s done in a case like this. (as opposed to just having a ‘let them decide’/‘you can’t let them decide’ debate)

I’m also happy you didn’t focus on the abortion crossovers; I find it leads people to be apathetic, as they already know where they stand.

As you’ve said, I’m sure they are good parents and I hope their family expands soon.