By Jen Dodds | March 14th, 2008
Broadcast on Wednesday at 9am, this programme featured interviews with Tomato Lichy and Paula Garfield, the RNID’s Jackie Ballard and David Blunkett, then a phone-in discussion, with quite a few phone calls from parents of deaf children and people who know Deaf people. Listen here. Discussions here and here. Big thanks to Claire from Team HaDo for transcribing it below!
Victoria Derbyshire – Also this morning an important and for some very worrying debate – should IVF treatment screen out embryos that are likely to develop disabilities? One deaf couple doesn’t think so. They want to try for a child using IVF, but say that a proposed law would force doctors to screen out some embryos likely to develop into deaf children. Tomato Lichy and his partner Paula spoke to me through a sign language interpreter about how they feel.
Tomato - What we’re saying is we want equal rights with hearing parents, so what we’re saying is either everybody has the right to choose or nobody has the right to choose – one or the other. The Government is proposing new legislation at the moment that if couples go through IVF and if they have testing and some of the embryos are found to be deaf then those embryos have to be discarded. We don’t want that. That makes us feel very emotional, thinking about that. Would that mean that we wouldn’t be able to go through IVF ourselves? It’s almost like the Government is treating deaf people as being inferior and almost not worthy of life or not worthy of being born. And we feel like we’re being attacked and that’s the issue we want to get across.
[cross talk]
Victoria Derbyshire – yes, carry on.
Paula – I’d like to add that deafness is not a life-threatening illness or disease. You can’t die from being deaf, so why is it that these embryos that have the deafness gene are being discarded? It’s almost like saying those embryos that have the hearing gene have more right to be born than those with the deafness gene.
Tomato – This is almost eugenics in a way. The Government is forcing people to select.
Paula – Who has the right to decide? To decide that embryos that have the deafness gene don’t have the right to be born? Who has the right to decide that?
Victoria Derbyshire – Don’t you have an obligation as parents to give the child the chance to hear?
Tomato - We have an obligation to make sure that our baby is healthy and we don’t see deafness as a disability. If we have IVF and if we refuse this genetic testing there’s an issue there for us in that there’s a family history of heart disease and cancer, so therefore if we refuse to have this genetic testing then these other issues are possibly going to come to the fore, so it’s almost like that’s punishing us really.
Paula – There are lots of horrible life threatening diseases like cancer and yet everyone seems to be focussing on deafness and getting rid of deafness. Why is it that we are seen as being worse than other horrible diseases like cancer or heart disease? Why is it that people are horrified? If our baby is born deaf, that’s fine with us.
Victoria Derbyshire – Why would you choose for a child to be deaf, over a child that could hear?
Paula – If we have IVF naturally, if some of the embryos have the deafness gene in them, then of course I would choose then because they would be the same as me and there would be a connection with that. For example I have a daughter, Molly, and she’s 3 and she’s deaf. How can I explain to her that she can’t have a deaf brother or sister because those embryos were discarded? She might think, “Well, what about me, should I have been discarded?” It’s almost like, you know, why does she have less right just because she can’t hear? We live active lives, you know. We travel on the tube, and everyone smiles at Molly, they think she’s so cute and adorable and they don’t see her as being disabled.
Victoria Derbyshire – But it is a fact that deafness is a disability.
Paula – To me, I don’t feel like I am disabled. I came here, with no problem, I can get a taxi, I can communicate with you no problem; we’ve done radio interviews; I’m a theatre director; my diary is full of life. I have a lot of activities, our weekends are busy, we go to parties, we go to the theatre, we go to museums, you know, we’ve been on the radio this week! If my life was full of suffering or full of pain then yes of course I wouldn’t pass that on to my child, but my life isn’t. My life is full.
Victoria Derbyshire – You obviously both feel, Paula and Tomato, you feel extremely positive about your deafness but is it right for you to be able to make that decision on behalf of an unborn child?
Paula – These embryos are created through IVF. They’re already there. They already have the gene in them. I want to make it very clear – we’re not designing a deaf baby at all, or creating a deaf baby. If we went to IVF and all of our embryos, there was nothing of the deafness gene in it, if all the embryos had the hearing gene, then absolutely we would go through with it and have a hearing child. Absolutely we would do that. It’s not about designing a deaf baby at all. People have accused us this week of being selfish or disgusting. They don’t know us though, they can’t speak for us. We are good parents. We give a lot of love to our child, you know. We take her out.
Tomato – There are lots of deaf associations you know that are led by deaf people – the British Deaf Association, the World Federation of the Deaf – they don’t see deafness as being a disability. Really, it seems to be society’s view that disables us. You know, if we talk about other minority communities, the black community, the gay community, there would be absolute outrage if we were getting rid of embryos that had those genes
Paula – It is of course natural for hearing people to fear if they have a deaf child because they are not deaf themselves, perhaps they’ve never met a deaf person before – they don’t know how to deal with it. But we are deaf; we know how to deal with it. We completely understand that fear.
Victoria Derbyshire – Tomato Lichy and his partner, Paula, speaking to me through a sign language interpreter. Let’s hear what you think – call 0500 909 693. Should this couple have the right to have a deaf child?
Let’s talk to Jackie Ballard who is the chief executive of the Royal National Institute for Deaf People. Hello.
Jackie Ballard – Hello, good morning.
Victoria Derbyshire – Should they have the right?
Jackie Ballard – Can I explain what the legislation is about? [laughs] That might be a sensible starting place, because clearly it’s a really emotive subject, especially for people like Tomato and his partner, and there’s probably a lot of people listening who don’t quite understand what the issue is about. This is putting into legislation something that is already practised. The Government is taking a number of already existing practises and putting them into one piece of law. And specifically what is says is if a couple are having IVF they can choose to have the subsequent embryos screened for various disabilities or serious illnesses before one embryo is implanted in the womb to turn into a baby. So, with IVF you have a number of embryos and a choice has to be made as to which ones are “discarded” and which ones are put into the womb, because you wouldn’t implant all of them. Now, the choice could be made just on a purely random basis, without any screening – that is up to the couple. But, if they fear that there may be some serious disability in the family and they don’t want it passed on, they can choose to have screening. If, during the screening, some of the embryos are found to be carrying a gene that can be identified as causing deafness, for example, and there’s a big question about whether you can clearly identify a gene for deafness or not, but if that could be done, and other embryos are not carrying the deafness gene, then the clinician would only implant those that did not carry the deafness gene.
Victoria Derbyshire – They would make that decision for you?
Jackie Ballard – They would, yes, and that’s what the law would say. However, so to go back a bit, the couple don’t have to have the screening, so they can have random selection and just let nature take its course so to speak. If all of those embryos have a deaf gene, they can choose to have one of those embryos implanted.
Victoria Derbyshire – So, the solution to what they’re saying is a problem and discrimination, is not to have the genetic screening in the first place?
Jackie Ballard – Exactly. And that is not compulsory.
Victoria Derbyshire – Fine. But do you agree with the principle that once screening has been gone through, that the doctors decide which embryos are discarded?
Jackie Ballard – Well, that’s the nature of IVF – that some embryos will be discarded. There’s a much bigger philosophical question about that…
Victoria Derbyshire – [interrupts] – sure, yes…
Jackie Ballard – [interrupts] …about the rights and wrongs of that.
Victoria Derbyshire – But I’m referring specifically to any embryos with any genetic defects, if I can put it like that.
Jackie Ballard – Well, we believe that – and this is where the disagreement if you like is – that this couple, and some other people who have been born deaf and who use British Sign Language as their first language, believe that deafness is not any kind of disability and they believe that it is a cultural identity.
Victoria Derbyshire – And what do you believe?
Jackie Ballard – Well certainly there is a cultural identity that has grown around deafness and they have their own language, they share a community of interests with other profoundly deaf people, but we would argue that there is still a disability of being not able to hear. So, by definition, if you are not able to hear, you have a disability and arrangements have to be made to enable you to play a full part – so, you had to have an interpreter to do that interview.
Victoria Derbyshire – Mmm. Billy’s in Liverpool and texted us about this, and Melanie is in Leicestershire. She got in touch as well. Hello both of you.
Melanie – Hello.
Billy – Hello, how are you?
Victoria Derbyshire – I’m very well, thank you. What do you think Melanie?
Melanie – Well, I can see both sides of the coin really. I have 3 grown up children all in the 19-20 age group and the eldest one was born hearing and the two youngest ones were born profoundly deaf, though we have no history of deafness. And I just have to disagree with Tomato and Paula’s opinion that deafness isn’t a disability. It limits their lives in certain ways. They’re independent, they travel around, they have good jobs, but nevertheless they cannot partake in the worldwide community in the same way that a hearing person does. Yes, they can go to deaf clubs, yes they can join deaf associations but they want more than that.
Victoria Derbyshire – But their view is that actually, we’re the ones losing out, because we can’t participate in deaf clubs and we can’t tune in, if I can put it like that, to cultural programmes for deaf people, or the deaf community broadly.
Melanie – Well, they do have a point there, but we’re looking at it from both sides of the coin and I have seem at close hand three young people grow up and I can only say that my eldest child, who is hearing, has had a much easier pass through life than my younger children. And we have done everything to make sure that the deaf children partake in the deaf community and the non-deaf community. They sign, they have had cochlear implants, which was their own choice as teenagers and they have friends on both sides of the camp, if you like. But nevertheless, they couldn’t listen to this radio programme. No matter how much a part of the deaf community, they couldn’t hear it live. It’s those sorts of things. You know, if they go to a party they can, if they only signed, they could only sign with other deaf people; if they wanted to go and chat with hearing people they’d find that very difficult.
Victoria Derbyshire – Let’s talk to David Blunkett for the next couple of minutes. Hello Mr Blunkett.
David Blunkett - Good morning Victoria.
Victoria Derbyshire – Do you comprehend where this couple is coming from?
David Blunkett – Well, I understand where they are coming from but I disagree profoundly with them. They’re coming from a particular angle which is growing within what they call “the deaf community”. I don’t accept that there is a blind, or a deaf community, we all live in the same society. But they would say amongst deaf people, which is, as has already been described, almost cultural – it’s to say we are separate; in some ways we have something you don’t have and this is a positively good thing and we are therefore promoting the idea that deafness is somehow superior. Now I don’t accept that for a moment. I don’t accept that not being able to see has some sort of profound benefits that you’re losing out on. The fact that you can’t read Braille is not a disadvantage to you. The fact that I have to is a disadvantage to me.
Victoria Derbyshire – I don’t think they were saying that they felt superior. Actually, they felt equal to people who could hear.
David Blunkett – Well, they said that, but there is a movement within those who are sort of very evangelical, almost proselytizing, as part of those who are deaf, about the refusal to have implants. You’ve just been talking to a mother whose children had implants and I think that’s a very sensible thing to do, but it is a choice by individuals, but there are people who don’t want implants, who believe that they’ve got a separate language and that that language is some sort of cultural development and I just don’t get this at all. I mean I don’t feel disabled, but I accept that being blind is a disability.
Victoria Derbyshire – Sure, but it has not stopped you from leading a fulfilled and fulfilling life.
David Blunkett – No, absolutely and I would never want a foetus to be aborted because someone felt that this unborn child might not be able to see or might be deaf, but if you have the choice. Say, in the past, that I had had to have IVF with my former wife and we’d been given an option to have screening so that we could be assured that our child would not be blind, I would have gone for it. And I think most of the people that I grew up with who had, for instance, Retinitis Pigmentosa, which is genetically passed on, would choose to have a seeing child.
Victoria Derbyshire – But they don’t want to “go for it”, using your words, so why aren’t we giving them that right?
David Blunkett – Well, we are giving them the right to go for IVF and we’re giving them the right not to have the screening. But if the screening takes place, you’re not actually saying we’re screening out a deaf child of the future, you’re screening in a child that does not have a disability – that’s what you’re doing. You’re saying do you really, seriously want to make the choice to have a deaf child over and above a child that can actually hear because, as I heard someone saying two days ago on Radio 4, that actually it would be awkward for the child, it would be unfair on the child to be able to hear in a family that was deaf? Well, I find that absolutely bizarre.
Victoria Derbyshire – Thank you for your time Mr David Blunkett, former Home Secretary. We’ll talk to more of you in a moment. Melanie, thanks for your time. Jackie Ballard, if you could stay for a few more moments that would be good, thank you. Here’s the travel –
[break for travel news]
Victoria Derbyshire – Let’s talk to Denise who is in Yorkshire, and David in Salford and Billy in Liverpool. Billy, you’ve been patient, good morning, what do you think?
Billy – Well I think it’s bizarre really. I think deafness is a disability, blindness is a disability, I’ve got multiple sclerosis, that is a disability and to say that these things are not disabilities is just very, very strange indeed. I did actually listen to the couple after I sent the text in and I did hear what they were saying about the way that their daughter is treated on the tube and everything and I do understand in some ways where they are coming from, but to choose to have a disabled child instead of a non-disabled child is just bizarre. It’s just very, very strange indeed. I mean, I’ve got a variable disability and I try to make the most of things, but if I was given a choice between having a child that was going to have that disability and having a child that was not going to have that disability, I would choose a non-disabled child straight away because I have had many problems with having multiple sclerosis and if it was a child who had MS and a child that didn’t, well the implications for that child, and for me as a parent would be enormous. And I really do think that it’s cloud cuckoo land, let’s face it, I would frankly say, and I don’t really know what you would say to the parents really. In a way, I do understand what they’re saying when they say that they’re deaf and there’s nothing wrong with being deaf, but it is a disability, because they couldn’t hear us now.
Victoria Derbyshire – Denise, you think they’re being selfish this couple?
Denise – I do yes. I think to knowingly deprive a child of one of their major senses and to purposefully cause them to miss out on a wealth of experience and opportunity that is available to people that can hear is, like the man said, bizarre. I hate the work “community”, but what they’re wanting to do is purposefully cut them off from the hearing community.
Victoria Derbyshire – They don’t feel cut off at all. Yes, they use and interpreter, a sign language interpreter. They don’t feel cut off though.
Denise – Well they are in a way. They have to be, because they can’t hear.
Victoria Derbyshire – That’s your perception. They don’t feel cut off at all.
Denise – I think the perception is… yes, it’s perception only, but people who hear, hear everything around them; people who can’t hear, can’t hear everything around them. And they are cut off from the hearing community if they can’t hear what’s going on unless they have special measures to cope with that. What they’re saying is, “We’re fine coping with that” and yes they are, they’re doing very well and that’s great, but to knowingly impose that on a child is irresponsible in the extreme. And I have a bit of a problem with IVF anyway and I don’t pretend to have any answers, but I think a lot of caution is needed in this. And surely every parent would wish that their child is as perfect as possible; “perfect” in inverted commas. To wish them to have a disability just so that they can be part of the deaf community is… They say they don’t consider themselves separate, but why do they call themselves the deaf community then? I think they see being deaf as the major part of their persona and it’s a disability, however they like to dress it up. It is a disability and to wish that on anybody is cruel.
Victoria Derbyshire – David, do you think it’s “cruel”; “selfish” – words that Denise has used?
David (from Salford) – Absolutely. I mean, I’m a totally blind person. I’ve not been blind since birth, but I’ve had an eye complaint and now I’m totally blind. And there’s no way on this earth… ok, I get by in life, but believe you me, it ain’t easy. You know, at times. There’s obvious things that go along with blindness that make life harder, like getting jobs and so on, and that’s just the thin end of the wedge. What choice are they giving the child? They’re just saying well, you’re going to be born deaf whether you like it or not. They’re not saying well have your hearing first and decide later on if you want to go deaf. If an operation came out tomorrow that could restore my sight, and give me total, full sight, I’d take it and I’m sure most right-thinking disabled people would as well. Do you know what I mean? I just think it’s selfish, it really is. And there isn’t a deaf community…
Victoria Derbyshire – Jackie, do you want…?
Jackie Ballard – Yes, if I could maybe try and explain where I think this couple are coming from. And I think the gentleman who is blind might agree that society discriminates against people who have disabilities – as he said, it’s more difficult to get a job if you’re blind or you’re deaf or you have some other disability. And if you belong to a group of people who are discriminated against by society, you start to wonder whether society really values you on an equal basis, and I think that this couple are interpreting the law that says given a choice between hearing and non-hearing embryos, you can only implant the hearing ones – that to them feels like they’re not being valued as a full member of the wider community. But in fact, I think what we’re saying is, of course, once you are in existence you are valued as a full member of the community and you should have every right and opportunity afforded to you, but if, during the course of IVF, there is a way of ensuring that children are born without that disadvantage in life, then we should take it.
Victoria Derbyshire – David, did you want to just come back in?
David – Yeah, just that the lady was saying there about where I might agree – with discrimination and that, well, discrimination but… I see myself as a person who can’t see, if you know what I mean? Who has eyesight problems. And I really… ok, things get on my nerves about discrimination, but I honestly don’t go through my life thinking, “woe is me” kind of thing…
Victoria Derbyshire [interrupts] – Yeah, pitying yourself, yeah.
David – I’m so discriminated against by the sighted world. You know what I mean? Ok, things get on your… well I can’t say the word, but you know, you just get on with it. But I certainly wouldn’t purposefully choose a child to come, knowing the difficulties I have had, having a disability when I was growing up – I had to go away to school, and not be a part of my own normal, sighted community.
Victoria Derbyshire – I don’t think, I think Jackie I hope you’ll agree this is correct – I don’t think that Tomato Lichy and Paula say is we absolutely want a deaf child. What they’re objecting to is the fact that the deaf genes, the deaf embryos if I can put it like that, will be discarded and they think that’s discrimination because it sends out a signal that people who are deaf are somehow inferior.
Jackie Ballard – I think that’s what they’re saying. And I think the onus is on us, the rest of society to say very strongly that deaf people are not inferior and that deaf people achieve all sorts of things that hearing people can achieve, but that given a choice between a child that has those set backs in life and a child who doesn’t, in those extreme circumstances of IVF and genetic screening, then we should choose the one that isn’t going to have those set backs.
Victoria Derbyshire – So they’re not saying, “We want a deaf child”, but “We want the RIGHT to have a deaf child” and not have to discard those particular embryos. I think that’s a fair summary. David, thank you very much. Billy, thank you. And Denise, thank you very much for coming on the programme. Jackie Ballard, thanks for your time, from the Royal national Institute for Deaf People. We’ll talk to more of you after the news and sport. Should IVF treatment screen out embryos that are likely to develop disability? That’s what new legislation will do. In fact, as Jackie says, it’s already happening in practice but it will be formally put together, if you like, in proposed new legislation.
[break for news and sport]
Victoria Derbyshire – Our debate this morning is about a couple called Tomato Lichy and Paula. They are both deaf. They want to have a child by IVF and they say a proposed law would force doctors to screen out some embryos likely to develop disabilities, including deafness, and they say that is discrimination. They say deaf people are not inferior to people who can hear, so why should those embryos be screened out? Let’s hear from Chris in Nottingham, Carol in Leeds, Ken in Winscombe and Richard in Bolton, thanks for joining us and thanks for your patience. Chris, why don’t you kick off and then everybody join in, so we actually have a conversation rather than a series of speeches if I can put it like that. Hi Chris.
Chris – Morning Victoria. I’m not… I haven’t got a huge amount of opinion personally on the issue that you’re talking about, but I am very angry about how it’s being reported. To me, it’s quite ironic really because most of the contributors, well, I assume all of the contributors to your programme have got hearing, but they don’t seem to be using it.
Victoria Derbyshire – Go on.
Chris – It’s being reported as if they want to create a deaf child, well, when I listened to the couple, I never heard them say that. I heard them say that they wouldn’t want a child to be discarded because of deafness.
Victoria Derbyshire – Yes. I don’t think I’ve said that they want to create a deaf child. I hope I haven’t. I don’t think I have.
Chris – I heard at the start of the show, “they shouldn’t be stopped from creating a deaf child”. And people are presuming that these people want a deaf child. They never said that and people aren’t using the ears that they do have.
Victoria Derbyshire – Yeah, fair enough. It’s whether they should have the right to have a deaf child. They don’t want necessarily a deaf child, but they just don’t want those embryos that might have a deaf…
Ken – Can I butt in there?
Victoria Derbyshire – Yeah, of course. Who’s that?
Ken – It’s Ken from Winscombe.
Victoria Derbyshire – Go on Ken.
Ken – You say they’re asking for the right to have a deaf child rather than have it screened out. We’re in a bit of a Monty Python area here, aren’t we? With the cat sat on the bench saying I don’t want to have a baby, I want the right to have a baby. From a personal point of view, having worked with a profoundly deaf person and a partially deaf person, the frustration I see on those people’s faces when they can’t communicate with you. I can’t see why anybody would even wish to have the right to have a deaf child.
Victoria Derbyshire – Well, but that’s what they want. And they were certainly not frustrated in communicating with me when we did the pre-recorded interview.
Ken – Well they didn’t, but that’s another one of my points – I think your pre-recorded interview was perfect evidence as to why, why would you want the right to have a deaf child? I’m not saying they’re going to have a deaf child, but surely to be able to screen the disability out in the embryo stage – surely that’s a better way to go forward, isn’t it?
Victoria Derbyshire – Well, they have very positive experiences of being deaf.
Ken – Yes, I know, but they then say that they’re no different to the rest of the community and of course they are, cos they’re deaf! They can only communicate with people that can either sign or can lip-read. It’s… [exasperated sigh]
Victoria Derbyshire – They can…
Ken [interrupts] – Now I’m as frustrated as the deaf chap I used to work with! I mean it got to the point with him that he tried to commit suicide because he couldn’t communicate with the outside world. Why would somebody with that on somebody? Why would somebody wish for them to have the right to have a deaf child?
Victoria Derbyshire – Carol, what do you think?
Carol – Well, at the point where he said, where he questioned whether it was unfair or not to have a hearing child in a deaf family, and I’m a speech and language therapist and I do have some experience of working with hearing children from deaf families and it is really hard for those children. Current policy in the area I work with is that if a child is born deaf then that child is assigned, almost from birth, a social worker, a teacher of the deaf, you know everything that we’ve got to help that child communicate in whichever way that is going to be right for them. If that child is born hearing then there’s nothing for them. And if that family is non-speaking and deaf and if they are a part of the deaf community then a lot of their friends will be non-speaking and deaf, so this baby will not receive adequate spoken language in order to develop functional speech and…
Victoria Derbyshire – Sorry, you mean if they have a hearing child?
Carol – Yes, if that family have a hearing child. Often those children aren’t picked up until they get to nursery and they don’t understand what’s going on, there’s no expressive language and they end up seeing me. And I’ve got recent experience of quite a few of those children. And that’s the way that current Government funding for disability works. So, regardless of the general point I think there does need to be some consideration for the difficulties that a deaf family would face having a hearing child.
Victoria Derbyshire – Richard, you’re interesting. Tell us about your children.
Richard – Yes, hello there. Yeah, I’ve got two lads; fantastic lads – Harry and James. Harry’s got no problems hearing and James has, he was born deaf in one ear and he’s got partial hearing in his other. And with his hearing aids he’s starting to make some good progress hearing-wise. I’d just like to phone in and defend the deaf rights couple, er, the deaf couple’s right really here. I’m opposed really to the meddling by the doctors. During our journey with James we’ve had an opportunity to meet with loads of deaf people, deaf couples and in fact I ended up working with a couple trying to help them market their own deaf awareness business and they would categorically not consider themselves to be particularly disabled. Now that’s remarkable for hearing people to hear, but I would totally concur with that – they’re very happy, engaging in every aspect of life. Obviously debates in groups would be difficult, but they feel some of the issues that people have with deaf people are very offensive really. And I, in my own mind, have no doubts that if that couple had a choice of what child they would have, they’d probably prefer to have a deaf child.
Victoria Derbyshire – For the reasons that perhaps Carol has just identified?
Richard – Well probably because they could parent it better. I mean the most important influence for that child is the parents by far and I’ve met with couples who want to have their deaf children speaking and hearing and they go down that route and that’s a brilliant route for them; others decide that the signing route is the better route for them. It’s very, very complicated and very difficult for you to choose, but if you’re equipped with a fantastic way of getting around the world with sign, with lip-reading, with lots of other skills, you can achieve immense things. The other thing I’d…
Victoria Derbyshire – I don’t think anybody… Nobody doubts that. And they are examples of people who have achieved immense things.
Richard – Yes. And my point there is that as parents, they’d be thinking, “We’d be able to pass on this wealth of skills, this wealth of knowledge to our child in a much better way than we might be able to, because we don’t have the skills to pass that on verbally.
Victoria Derbyshire – Fair enough, and then you go out into…
Richard [interrupting] – It would equip that child in such a great way to go out and achieve as well.
Victoria Derbyshire – Sure, but then you go out into the big, wide world and there isn’t always a sign language interpreter available.
Richard – Well, there’s plenty now. It’s a growth area. It has its own rights as a language in its own right. You know, you could say that if you only spoke Welsh you’d still get by – there’s lots of provision for Welsh speakers…
Victoria Derbyshire [interrupts] – Well let me read you this email…
Richard [interrupts] – If you work in various public bodies now they translate things into millions of languages for people.
Victoria Derbyshire – Sorry, Ken? Is that Ken or Chris? I can’t…
Ken – It’s Ken. The only reason all these things are there is that we’re lucky enough to live in a society that can supply all these things
Richard – Absolutely. That’s great. That’s what we should be doing.
Ken – But once you step out of that society, it’s not there, is it?
Richard – I know, but you don’t because it’s in society – you don’t step out of it; it’s here in our society and our society is getting better …
Ken [interrupts] – Well you’ve just been talking about doing worldwide things. If you’re gonna go on a worldwide trip for example and you’re deaf and you go to the depths of Africa on safari, what’s the chances of their being a sign language interpreter if you get bitten by a spider or whatever? You’re trying to sign to somebody to say you’ve been bitten by a spider and they’re looking at you like you’re some kind of fool.
Richard – You don’t know what you’re talking about. My two friends who are completely deaf have just returned back from a worldwide trip, ending up for a year in New Zealand. You’ve no experience of it so really you should just butt out.
Ken – I have experience. I’ve worked with deaf people and they both got really frustrated because he couldn’t hack it. I didn’t get frustrated; I was fine with it. The frustration was what the deaf people were suffering because they couldn’t communicate. We tried as much as we could to communicate with them but there comes a point where…
Richard – You don’t have the skills, you haven’t been on the training, you probably didn’t know what you were doing.
Ken [shouting] – Why would I…
Victoria Derbyshire – Richard, can I put this email to you?
Ken – Why would I want to… Why would I go and learn sign language and learn to lip-read, just because I can? I’ve got other things to do in life. I’ve got children to bring up, I’ve got work to do, I don’t have time to do these things.
Richard – Then move on and let somebody else do it. Plenty of people would be quite happy to spend some wonderful time talking, guiding deaf people who have no real problem communicating whether they can hear or not. You haven’t had any experience of that.
Victoria Derbyshire – Richard, let me read you this email. Richard, I’d like to read you this email from Brian and you may say it’s naive but I think a number of people would agree with it. “Surely it’s best for society and for the child itself to have the ability to hear? From hearing fire alarms and walking across the road safely, to appreciating the music of Beethoven and Mozart, it’s better to be able to hear.
Richard – Right, ok, Beethoven went deaf and created some fantastic music; to cross the road, you use your eyes and a smoke alarm, you put lights on and they flash. Next question.
Ken – You said Beethoven went deaf and he created music; he already understood the rules of music before he went deaf though, didn’t he?
Richard – Well, deaf people can understand music from vibrations.
Victoria Derbyshire – Sure. Richard, is it better to be able to hear?
Richard – Well, obviously you’d want your full faculties but it’s no big deal if you haven’t got your full faculties. You can get by.
Victoria Derbyshire – Thank you very much Richard and Ken. Go on Carol.
Carol – As Richard said, yes, it clearly is better to be able to hear, but, as I said before, there does need to be support for children who are able to hear but who are in a deaf world and they’ve got the reverse of that difficulty.
Victoria Derbyshire – Yeah, ok.
Carol – and you know, our society has no support for these children.
Victoria Derbyshire – Thank you very much Carol and Ken and Richard and Chris. Here’s the travel.
[travel news]
Victoria Derbyshire – One emailer says, “I have a deaf couple living next door to me; they had twins – the girl was deaf, the boy had slightly impaired hearing. When the twins were teenagers they had major problems with the boy because he resented bitterly being surrounded by the deaf community. As a result he went off the rails and only just missed out on going to prison. I know that they resented having a hearing child and wish that he had been deaf as well.”
John in Bristol says, “Since the birth of our profoundly deaf granddaughter nearly 4 years ago, we’ve experienced at first hand an almost tribal-like mentality amongst a significant proportion of the deaf community. Digital hearing aids and cochlear implants are eschewed as unnatural interference and those that use the advances that medical research has to offer are regarded as somehow impure. By all means celebrate individual differences but not to the extent that it breeds an arrogance and a contempt for those deaf people who choose gratefully to accept technological means of leading a more integrated role in society.”
Here’s Nick in Milton Keynes. Hello.
Nick – Hi Victoria.
Victoria Derbyshire – Hi. And Erica in Abergavenny and Andy in Wigan. Now, I’m looking at the time. I may not be able to get you all in before ten, but if we don’t, we’ll do it after 10 as well. Right – go on Nick.
Nick – My point is that I have 2 hearing children and 2 deaf children. The deaf children are aged 5 and 7. I don’t think people should underestimate the challenge that these kids have. Mine have a condition called Auditory Neuropathy which is caused by genetics and they hear sounds but the sounds are scrambled between the cochlear and the brain, so you can imagine how difficult that life is for them. Hearing aids don’t help. All the sounds that they hear around them are just scrambled.
Victoria Derbyshire – Yeah. So do you think IVF treatment should screen out embryos that are likely top develop disabilities, including deafness?
Nick – I do and I think that, you know, we know so little about genetics at the moment, but if you could screen out conditions like this I think it would be worthwhile.
Victoria Derbyshire – Yeah. Erica, do you agree?
Erica – I find it really hard. I’m listening away and thinking where do I stand on this, because my daughter’s deaf and she had a cochlear implant at 2 years old - she was deafened at 5 months by meningitis and I chose to give her an implant because I wanted to give her access to the hearing world. I guess what I wanted was for her to be like me, just as this couple want their child to be like them. So I really, really feel for them. I read the article in the Observer on Sunday and started off feeling angry then thought no, actually I completely agree with them. If things had been different, if my daughter had been born deaf and if some miraculous thing had told me this embryo I had inside me was deaf, the idea that I would have got rid of her is just awful. She’s…
Victoria Derbyshire – Yeah, but an embryo in a petri dish is different to a foetus that is developing in your womb.
Erica – Yes I know. I just feel they have a right to have a child that is like them. I really do.
Victoria Derbyshire – Ok, that’s interesting. Thank you Erica, thanks Nick. Hi Andy. Thanks for your patience. What did you want to say?
Andy [poor quality sound link] – No problem at all. If you could just give me a couple of minutes just so I can get all of my points across. Number one, I’m sure I heard one of your texters say I wouldn’t want to choose, how would anyone choose to be disabled? Well it’s not like going in your local Wetherspoon’s where on the left hand side of the menu it’s blind and on the right hand side it’s deaf – some of us are born with it, yeah? And we ensure to ourselves and we find the best way to go about it and we surround ourselves with the people we trust and we get into environments. It doesn’t stop me placing bets, it doesn’t stop me going to rugby games cos I take me radio and I’ve got sighted assistants and things like that. I’m not bad. And I’ll just say, cos I know the news is coming up, all of our other sensory aids are enhanced. Like Richard said in Bolton, when a deaf person wants to try and cross the road they can see instead of using their ears. That’s if they’re deaf of course. And for blind people we have other assistance, we have these crossings, we have audio description on the telly and deaf people have, you know, what are they called? Subtitles. So yeah, everything’s there if you want it and if you want to use it. But if you want to feel sorry for yourself, which admittedly not everybody does, then that’s up to you. It kind of sounds a bit harsh, but…
Victoria Derbyshire – And you just get on with it do you Andy?
Andy – Well, there are difficulties of course. You guys driving in the fog – you know what it’s like, don’t you? Can you imagine doing that for, like, the whole of your life? But then your sat nav would help you, wouldn’t it? The people we trust are our sat navs, if you like, when we’re getting from A to B and things like that. And you know, we manage. It’s not impossible you know. It’s not as difficult a world as everybody is making out. As I said, I was born with it and I’ve been lucky because I’ve surrounded myself with the right people and I’ve got into a good working job which is fine and just to let everybody know, it’s not impossible.
Victoria Derbyshire – Ok, thank you very much Andy, I appreciate that.
[news]
Newsreader – A deaf couple who want to try for a baby through IVF say a proposed law would force doctors to screen out some embryos likely to develop into deaf children. Through a sign language interpreter, Tomato Lichy and Paula told us they wanted the same rights as hearing parents and the new law was wrong.
[cut to Tomato] – That makes us feel very emotional, thinking about that. Would that mean that we wouldn’t be able to go through IVF ourselves? It’s almost like the Government is treating deaf people as being inferior and almost not worthy of life or not worthy of being born.
[end of deaf-related content]
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