By Alison Bryan | March 12th, 2008
Here’s a BSL/English Interpreted version of this morning’s BBC Breakfast interview with Tomato Lichy and Paula Garfield:
Hopefully the earlier interview with Jackie Ballard, CEO of RNID will be available online soon.
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By Jen Dodds | March 10th, 2008
BBC Radio 2 Jeremy Vine Show aired a programme on as a follow up to BBC Radio 4 Today this morning (see this blog post).
You can listen to this programme here, and a full transcript of the programme has kindly been provided by Claire, of Team Hado. Shame on the BBC for not providing immediate access!
Transcript begins:
Jeremy Vine (JV) - We’ll talk in a moment about deaf campaigners asking for the right to choose deaf children and why they say being deaf is not a disability…..
JV - Should deaf parents be allowed to choose to have a deaf child over one that has all its senses intact? This is the controversial debate prompted by a new bill going through Parliament which calls for embryos used in IVF treatment to be screened out if the child would be born deaf. Some deaf parents say this is quite wrong and they should have the right to have a deaf child. Tomato Lichy and his partner Paula are both profoundly deaf. They already have one deaf child and they want another – one they might require IVF treatment to achieve. They’re both in the studio here with me but first of all we thought you should hear an interview which Mr Lichy gave earlier to my colleague John Humphrys through an interpreter and you’ll hear him explaining why he wants to choose a deaf child over a hearing one.
[Some of the interview from Radio 4 repeated here]
JV – So that was recorded earlier and Mr Lichy and his wife Paula are both with me in the studio now here on Radio 2, as is their interpreter Susan Booth, whose voice you will hear. Welcome to you both and thanks for coming in.
Tomato Lichy (TL) and Paula Garfield (PG) – Hello.
JV – Can you just tell us first of all, Paula, about your child and how you felt when you discovered she was deaf?
PG – When I was pregnant I expected to give birth to a hearing child because my family are hearing and Tomato is the only deaf child in his family, though I have a twin deaf sister, so I assumed that my baby would be hearing. So I played the baby music every night, and when it was born and cried, I put the same music on hoping it would remember it from hearing it through my pregnancy. And there was no response. And I thought I’d wait a bit longer until she was 4 months old for a hearing test. And when she was diagnosed as deaf I thought that’s great, she’s part of me, we share the same culture. Now she’s 3. She’s a fantastic child. She knows so much vocabulary, she has such rich language, we communicate with each other in a fantastic way. When I was 3 I couldn’t say one word and I could only say at the age of 4, the word “aploo”, meaning apple. I couldn’t say I want an apple, an apple is smooth, I couldn’t say what colour the apple was. My daughter is 3 and she can say “I want an apple, I’m thirsty, I like apples”. Sign language is such an amazing language.
JV – Now this is about, in a way, your next child and whether it would be right for you to choose a deaf child.
PG – Well, I’m 40 years old. Hopefully I can conceive naturally, but I may need to pursue IVF and if there were 4 eggs for example and the doctor said one of those embryos is deaf, then naturally I would want to choose the deaf embryo. It’s the same as people who have religious beliefs maybe wanting to have their baby circumcised for example. It’s a choice they make because they want the baby to be part of their own culture. I would choose a deaf baby because of the history and the culture that I have and I would want that to pass it on.
JV – Ok, Tomato wants to come in?
TL – Some people have said why force a baby to be deaf, why create deaf people, but the embryo is already deaf, we’re not creating it to be deaf and we’re just asking for the opportunity to allow it to develop.
PG – I don’t want to design a baby and make it a certain way, it’s about the fact that one of those embryos and I would choose to have that one to give birth to.
JV – But now you’ve given the example of 4 embryos. Three will result in babies that can hear and one will result in a baby that is deaf. There will be lots of people listening who will say of course you choose one of the hearing embryos because they will have more ability to enjoy their life in the world.
PG – It’s very natural for someone with hearing to want to have a hearing baby and for a hearing mother and father to have a deaf baby to be concerned about that and not want to give birth to that, but for us, a deaf baby is like us. There’s nothing different about the child and us. We don’t see deafness as a disability.
TL – Deaf children would have access to our language and culture in the same way as hearing parents would be able to pass on their language and culture to their child.
? PG? – We’re from a hearing family, both of us, and we know that our parents, when we were born deaf, we lost – they didn’t know what to do, how to educate us, but as deaf parents we know how to educate our child in the language that is our language, about the world, about colours.
TL – Also, hearing parents of course would want to choose a hearing baby, but if the Government decided that hearing parents must choose a deaf baby there would be an uproar and that’s how we feel. We want that right to pick a deaf baby – we want an equal right.
JV – Ok, and just a final question to Tomato based on what we heard him saying earlier. The idea was put to Tomato that if you can’t hear Beethoven or if you can’t hear James Blunt or the Eagles you’re not living as full a life. Why is that so preposterous?
TL – Well everybody says pop music is crap anyway.
JV – Let’s leave James Blunt out of it.
? – I feel that we haven’t missed anything. Hearing people think we’ve missed out, but we can drive, we can go on foreign holidays, we can travel round the world, we can go to work, we can go to a restaurant, we can go to the cinema…
JV – Ok, what about…can I ask, about the hearing of other people’s conversations and being locked out of the kind of incidental conversation you can hear around you in a crowd maybe, or on the playground? What about that?
? I like the idea of going to a deaf club and seeing 200 people using sign language and gaining information from that. That’s the kind of incidental conversation that I want to be part of.
JV – Ok, let me pause there. Can I play some music? We’ll have some callers on the line very shortly. We’re talking to Tomato Lichy and Paula Garfield, a married couple. They have a deaf daughter and are deaf as well and they make it clear that they prefer their next child, if they have one, to be deaf as well, and we’re talking about the rights and wrongs of that.
[song]
JV – I’m with Paula Garfield and Tomato Lichy and…just remind us the name of your daughter you guys?
? – Molly
JV – Molly. And how old is Molly?
? – She’s three.
JV – Three. And if you were listening earlier you will know that Molly was born deaf to these two people who are also deaf but they’ve made it clear, and this is why it’s so interesting, that if they have another child, they would rather that child was deaf. The Government is discussing at the moment, politicians are discussing laws about the selection of embryos and what they’re saying is that they would like the right, if they have IVF, to select the embryo that would turn into a deaf child.
Joy ?? in Leeds says – “I am partially deaf and I believe it is bordering on abuse for deaf parents to want deaf children. Deafness is a horrible disability. I have missed out on so much in my life.” Would one of you like to respond to that?
PG – Yeah. Deafness isn’t an illness. You’re not going to die from deafness. It’s important to mix with people who understand your deafness and are willing to learn how to communicate with you, whether that’s via sign language or other ways. Some people might say, oh, you can’t hear, I don’t want to be with you. It’s important for you to think about improving the quality of your life.
TL – I’d also like to add that I felt similar from what I learned from my parents, who listened to everything that doctors said that it was all about being cured and being hearing. So I pretended to be hearing. I was a fake hearing person and I really struggled until I learned sign language and I met deaf people, and my self esteem and my confidence were transformed. I think that the medical profession give such a negative view of deafness and it’s important to think of it as a positive thing.
JV – Alright. Let’s take a call if we can. John Bowls is in Gosport. Ok John, you’re going to be talking and Susan the interpreter will hear you and she will sign what you say to Paula and Tomato. Carry on.
JB – Good afternoon Jeremy. Good afternoon Susan, Paula and Tomato. I’m sorry to say that I believe their choice of having a deaf child embryo implanted if they have IVF thoroughly repels me. The state of the world today is bad enough, so I would say you should give every child an opportunity to achieve in this world and to start a child off without one of its primary senses is, I’m afraid, to me it’s sick. If you have a child who is hearing that’s all well and good. You can teach it sign language. You can’t teach a deaf child to hear.
JV – Alright, let’s let them come back on that because they’re desperate to come back on that.
PG – I don’t know why being deaf is disgusting or sick. Are you saying that I, as a deaf person, is disgusting and sick?
JB – No, I’m not. I said it’s disgusting to want an embryo.
PG – You can’t create the world as a perfect world. The world is full of war. The world is full of crime. We’re not creating that. The crime comes from elsewhere. Deaf people, for example, myself, I set up a company and I have hearing people working with me. We create work for interpreters like Susan Booth, who is here today and a high percentage of interpreters who work for deaf people, they come from deaf families themselves – some may have deaf parents or deaf siblings and they realise the rich culture and community that the deaf community is and they want to work with us and be part of this.
JV – Alright, let me let John come back on that. John?
JB – I’m sorry, no. What they are trying to do is twist everything into their favour. The world is sick, but I’m not saying they start every war, I’m not saying they’re responsible for certain aspects of what’s going on. Of course they’re not. They’re not the Government of any country. They’re two people who happen to be afflicted with deafness. Just one instance Jeremy – Imagine they have a child who is deaf; it’s walking across a road and there’s a car coming. They can’t see it. They can’t hear it. Somebody shouts a warning, but no warning could be heard by them. The child dies. Where do they stand on that issue?
JV – Ok, let’s just have that one. On that question.
PG – Well I’m 40 years old and I’m still alive. I cross the road and have done thousands of times. I’ve been brought up in the middle of London and can anyone hear people shout in the middle of London? I thank God I can’t hear the traffic.
JV – Right, let me read some more comments to you and we’ll do one more call and then some more music. Stuart emails and says, “I’m deaf in both ears not from birth but by an infection I got in Africa. I wouldn’t like my child to suffer the same disadvantages as me, but who am I to interfere with nature? Just because we have the means to prevent, it does not give us the right to interfere with nature. Isn’t this similar to the masses of abortions of female foetuses in India because they want male babies? We start with eliminating the deaf and then the blind and the less able bodies. This all starts to sound horribly familiar.”
Chris Doria in Worthing says, “My daughter who is now 36 was born deaf. I do understand what this family is feeling, but I think it’s born out of fear. They are afraid, as we were, but for opposite reasons, that if their child hears they will not be able to communicate with them.”
Dominic Duckworth says, “I feel the deaf person has a huge chip on his shoulder,” well there you are, you can answer this. I’m waiting for that to be signed. Oh it’s signed exactly as I’d imagined. Also, “What a selfish man to take away the choice for that child. I’m sorry to say that he and his wife need to grow up.” Well, there we are. No one ever spares anyone’s feelings here. Can you answer that?
PG? – Hmm. I think people have their own views and it’s important that we accept different views. Like, you’re not allowed to criticise the gay community or disabled people and the law states that deaf people are equivalent in status to hearing people, but the Bill that’s being discussed means that they’re not being treated as equal. And the choice that we have, to want to have a deaf baby, is about us wanting to continue our culture and our community. Think of the example of the black community who have suffered for years from slavery to become equal in status and I think that deaf people need to continue fighting. I can’t expect you to understand from this brief moment about how we feel. You need to meet us, you need to discuss with us, ask us how we feel. When AIDS first emerged people said oh, the gay community, they’re disgusting etc. It’s the first reaction and I think that’s what people are doing today. It’s their first reaction. They’re thinking oh no, deaf people are going to control babies. We are lovely people.
JV – Ok, let me bring in Sandy Pritchard, another caller. Sandy, you’re through to the interpreter Susan. You’re in Hazelmere, do go ahead.
SP – Yes, good afternoon Jeremy. We’re a hearing family and my son, Oliver, who is 11, is profoundly deaf. Coming from a very different situation than the previous speakers, we were very worried about another child coming into the world and society accepting that child. Unfortunately society judges you on your ability to communicate, and when you’re in a hearing world and you are a deaf child it is very, very difficult, particularly at school. The whole legal situation pretty much forces you to place that child in hearing schools and the child becomes very socially excluded and unable. We are now very fortunate in that we’ve been through tribunal processes and our son is now in a deaf school, so he has the best of both worlds. We went through a screening process when he was 6 years old, when I wanted to have another child, and that child was not found to be deaf and was born and is now 5 years old and beautiful. A hearing child. But saying that, had we found out that child was deaf at 12 weeks as an embryo, I don’t know what I would have done. But I do think that at least having the choice was very critical to us.
JV – Ok, thank you very much Sandy. Lots more comments coming in. Email vine@bbc.co.uk . I think we’ll just play some more music and then speak some more to Paula and Tomato through Susan, about their child and the child they hope to have. This is about the choices we can make now before a child is even born.
[song]
JV – We have with us Paula Garfield and Tomato Lichy who are both profoundly deaf. There daughter Molly is as well. They’re concerned about a Bill going through Parliament which they say will make it a doctor’s duty, in IVF, to remove deaf embryos and they have said they’d rather have a deaf child next if at all they can, so they want to do it in reverse. They would, if they had the choice, choose the deaf embryo. And this has caused a great split in the listeners this afternoon. Miles from Clapham says, “Why can’t we let these thoughtful and caring people make their own decision? They will raise their deaf children to be better people and to live a fuller life than many so called able people.”
Tina Calderhouse has just emailed as well and says, “I’m the hearing parent of a deaf 7 ½ year old son. It’s not his deafness that holds him back, it’s hearing people’s attitude towards him that gives him a disadvantage.” Both our guests are nodding here. “We now have a deaf mentor for him, that we pay for privately, because we can’t get any help for him via school because he’s too good at speaking and he’s doing too well academically. He’s a success story because we never treated him as disabled, even though the world looks at him through distorted eyes. And it breaks my heart to hear people speaking about deaf people in this way.” Paula, you have a word of advice for that mum, Tina?
PG – That’s fantastic. Your child is so lucky to have such fantastic parents with the attitude you have. And I agree, you should never treat a deaf child as if it is disabled and start putting barriers in its way such as it can’t drive, it can’t cope independently. Sadly you will have this long battle with society’s attitude towards your son, but keep going.
JV – Because you don’t see being deaf as a disability? Right?
PG – Not for me, no. I’m the artistic director of Deafinitely Theatre and I have a team of actors and a technical team and I feel that regardless of whether we’re deaf or hearing in that team we’re all equal and we’re all on the same level.
TL? – I think in the past that the way doctors have treated me has make me feel like I am disabled but once I started to mix in the deaf community I realised that was not the case.
JV – Ok, just some more comments for you. Ann in Cheshire says, “I can’t believe these people, how selfish they are, to intentionally want to deny their child the joy of hearing. They do not deserve another child.”
Phil in Leeds says, “Since I was born I’ve been totally deaf in one ear. The other ear has got worse as the years have gone by and I’ve just had an operation to restore the hearing in it. Hearing loss forces you to become a recluse. I can now join in conversations because I can hear better and I’m so much happier. I do not know why anybody would choose to inflict a disability on a child. It’s like choosing to have a baby without arms or legs.”
Anne in Manchester says, “This whole thing really upsets me. I have a partially deaf child.”
And Eve in Hazelmere, good afternoon to you.
E – Good afternoon.
JV – What do you say to this lovely couple?
E – I think they’ve got all the right to choose to a deaf child and I can fully understand why they would want to have a deaf child as opposed to a hearing child. I don’t see there’s any difference from, a “normal” in quotation makes, family choosing to have a non-disabled child.
JV – Would it not be worth asking what the child would want?
E – I don’t think the child cares one way or the other really. I have a deaf son who I know for a fact would have been a much more confident child had he been brought up in a deaf family rather than a hearing family.
JV – Right. Paula, if you project forward 10 years and you have a 10 year old son and he is deaf, as you wish, if you gave him the choice, surely he’d want to hear, wouldn’t he?
PG – I wouldn’t ask him that question I wouldn’t say would you have preferred to be hearing. Why would I do that? I don’t know why it’s so important to people that we have to be able to hear music. There are people who become deafened later in life. Are you expecting to get rid of those as well? It’s this elimination of people who aren’t perfect. Well the world isn’t perfect and if it was, we’d never learn from one another.
JV – Thank you very much indeed for joining us and spending your time with us here today. Paula Garfield, who’s married to Tomato Lichy and their daughter is Molly…
PG – We’re not married.
JV – Not married? Ok, they’re partners. Ok, fine! And interpreter Susan Booth, as well, thank you for coming in. Great to see you.
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