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The Right to be Deaf

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

[interview transcribed by Claire from Team HaDo]

John Humphrys (JH) – You would think that if deaf people had children they would hope that their hearing would be normal. You might be wrong. There is an important, and to many people, deeply disturbing, debate at the moment over whether they should be able to choose, effectively whether 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; that they should have the right to have a deaf child. Tomato Lichy and his partner are both deaf and 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 (TL) – 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.

JH – 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?

TL – 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 about the history of deaf people and I’m very involved in the deaf community. 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?

JH – You may feel very positive about your deafness and you are absolutely, of course, entitled to feel that, but surely you are not entitled to make that decision on behalf of an unborn child?

TL – I’m not religious myself, but people say to me that 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 are 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.

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.

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.

TL – Again, we’re talking about different perspectives about what disability means. I don’t see myself as disability… er, 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. But 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 I think many people who are 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 that 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.

JH – Yes, it’s up to you to decide whether you’re 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.

TL – But it’s not just me, you know, it’s the British Deaf Association and it’s the World Federation of the Deaf. Organisations led by deaf people, they all agree that deafness is not a disability.

JH – Mr Lichy, many thanks.

The English text of this letter can be found here. Note: this is currently a working document. We are currently collecting signatories, if you would like to add your name (including titles and organisation where possible), please see this page on how to do this.