The Right to be Deaf?

A new bill going through Parliament could mean that embryos used in IVF treatment would have to be 'screened out' if it the child would be born deaf.

On the morning of Monday 10 March 2008, deaf activist and parent Tomato Lichy appeared on BBC Radio 4's Today programme to discuss this controversial subject with the programme's presenter, John Humphrys. The transcript of their debate is reproduced below,

John Humphrys: You would think that if deaf people have children, they would hope their hearing would be normal. You might well be wrong. There is an important - and for many people deeply disturbing - debate at the moment over whether they should be allowed to choose, effectively, that their child should be deaf.

A new bill going through Parliament would mean embryos used in IVF treatment would have to be 'screened out' if the child would be born deaf. Some deaf people say that is wrong: they should have the right to have a deaf child.

Tomato Lichy and his partner are both deaf - they have one deaf child already, they want another. They may have to have IVF, but they don't want to have to choose a hearing embryo over a deaf one. I spoke to Mr Lichy through a signer, whose voice you will hear.

Tomato Lichy: Yes, that's correct. I couldn't participate in any procedure which forced me to reject a deaf embryo and accept a hearing embryo. That's our family view.

John Humphrys: Do you not have an obligation to the child that may be born that that child should be able to hear, if at all possible?

Tomato Lichy: If you see deafness as a disability, yes. But I don't view deafness as a disability. I feel very positive about the language, about the culture and the history of deaf people, and I'm very involved in the deaf community. And also we already have one deaf child. Now if we say to her, at some point in the future, \"We had a deaf embryo, but the government told us we couldn't have that one\", how would she feel about it as a deaf person herself, if the government had forced us to do that?

John Humphrys: You may feel very positive about your deafness - and you are absolutely, of course, entitled to feel that - but surely you're not entitled to make that decision on behalf of an unborn child?

Tomato Lichy: I'm not religious myself, but people say to me: \"God created me as a deaf person. Why would you oppose God?\" These children are created, these embryos are created, they should have equal chances in life. I mean really, for me, the core issue is that the government is saying that deaf people are not equal to hearing people - you know, despite the fact that over time we've had more and more rights for disabled people, now they're seeking to establish a legal principle that deaf people are inferior to hearing people, and there may be more laws once this gap opens. I think we have to stop that principle being established that deaf people are inferior to hearing people.

John Humphrys: 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.

Tomato Lichy: 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.

John Humphrys: 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?

Tomato Lichy: 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.

John Humphrys: 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.

Tomato Lichy: 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.

John Humphrys: 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.

Tomato Lichy: 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?

John Humphrys: 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.

Tomato Lichy: 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.

John Humphrys: Yes, it's up to you to decide whether you are disabled or not. It is not up to you to decide whether a child should be born disabled or not - that's really my point.

Tomato Lichy: But it's not just me. It's the British Deaf Association; it's the World Federation of the Deaf; organisations led by deaf people. All agree that deafness is not a disability.

John Humphrys: Mr Lichy, many thanks.