By Alison Bryan | April 14th, 2008
Disability Now wrote a recent Editorial which can be seen here [PDF].
This compliments a recent article by Dr Steve Emery, in the same publication.
Details of other media coverage can be found here and here. An updated list will follow shortly.
Posted in Media Campaign | 2 Comments »
By Alison Bryan | March 17th, 2008
Following this post, here’s the second summary of coverage on this subject (from the past week):
Radio:
BBC Radio 5 Live: The Victoria Derbyshire Show, Transcript here, Discussion here and here
BBC Radio 4: The Moral Maze, transcript and online discussion
BBC World Service: Have Your Say, transcript, discussion, and transcript comment
BBC Radio 4: Today, Lord Winston & Professor Jones, transcript
Television:
BBC Breakfast: Interview with Tomato Lichy and Paula Garfield
BBC Breakfast: Interview with Jackie Ballard (link to follow)
Scottish Television: The Five Thirty Show, Transcript here
BBC News: Catholic pressure on fertility bill
ABC News: No to ‘Deaf’ Embryos
Newspapers:
The Guardian: Letter from Jackie Scully: Hearing Beethoven
The Herald: Emotional squeamishness over deaf baby
The Times: Deafness and disability: A wonderful response
Catholic News Agency: Deaf couple wants to use genetic selection to have a deaf child
The Peninsula (Qatar): Deliberately choosing a deaf child is criminal
The Herald: Let parents go ahead and have a deaf child
The Sun: David Blunkett - Wanting a deaf child is daft
Blogs:
Dr Steve Emery: The wise young guy and the zombies
Deaf DC Blog: Teresa Blankmeyer Burke, Motherhood, Guns, and Open Futures
bioethics.com: Choosing a Deaf Baby is Criminal
Mike Gulliver’s Blog: A plea to the press on Clause 14 (HFAE Bill)
BioEdge: British activists call for creation of deaf embryos
Paul Humphreys’s Weblog: Computus - the way we decide when Easter is..
Geek of All Trades: You’re deaf, not retarded.
At the Rim: The BBC Interview
The Coterie of the Zombies: The Right To Remain Silent
The Coterie of the Zombies: spunk whores get their come-uppance
The Gray Monk: The right to choose?
Ye Goblyn Queenne: Speak up please. You are deaf. We can’t hear you.
OlyBlog: Screening Embryos for Blindness / Deafness
Liberal Burblings: Deaf couple and IVF - angels on the head of a pin?
Media Dis&Dat: Controversial new British law challenged by deaf community
Bede’s Journal: Are Deaf People Disabled?
As in the days of Noah: CULTURE of DEATH:’Creating a deaf child IS immoral and no parent should be allowed to choose this for their child’
123 Creation: Props to John Humphries on the deaf issue
This side of the house: Deaf parents chosing deaf babies
Remembering the Ability in Disability: Are they deaf? or just DisAbled?
John Smeaton, SPUC Director: The moral maze created by IVF
The Deaf Blog: The Right to be Deaf
Erasmus28: Radio 4 - The Moral Maze - IVF
Centre Right: The disgraceful desire to inflict a disability on babies
Catholic News 24/7: Deaf couple wants to use genetic selection to have a deaf child
Vixen’s Diary: The Right to be Deaf?
Carlos Online: Deafness, Disability and IVF
Daily Grind: Choosing Child’s Genetic Makeup
Parent Dish: Should UK couple be allowed to choose a deaf embryo?
Mike Gulliver’s Blog: The lie of ‘of course deaf is wrong’
Berke Outspoken: Deaf IVF Embryos, Natural Deaf Babies, and Choices
Our Future Thoughts: Having a Deaf Child - On Purpose
Rob’s Blog Space: Is deafness a Dissability?
All The Young Dudes: Media Watch: Tidish Boom!
Mulier Fortis: Designer Babies …?
iblog so you don’t have to: Should deaf parents be able to choose deaf children?
disability: Should deaf parents be able to choose deaf children?
spEak You’re bRanes: Gingervitis
All The Young Dudes: Transcript: Out In The Middle Of Whoop, Whoop’s World Service, 6pm. March 12th 2008
Freemania: Deafness and the availability of options
Alejandro: Deafness is a Disablitiy
Liberal Conspiracy: Are they deaf? Or just DisAbled?
Defying Clarity: Deaf British Babies: Morally Repugnant?
Butterfly, Like Me…Deaf’s v/blog: Choosing a Deaf baby is criminal” wrote Daniel Finkelstein!!
All The Young Dudes: The Human Fertilisation and Embryology Bill: A Message From G.O.D
The Human Future: An Embryonic Disaster in the U.K.
Forums:
Games Radar: “Is it wrong to try and have a deaf child?”
Aspices for Freedom: Doctors want to screen out embryos with autism
Witte zwanen, zwarte zwanen: Playing God vs. de loterij
deafchurch.co.uk: New IVF bill causes moral debate
Please let us know in the comment box, if you know of any more.
Posted in Media Campaign | 9 Comments »
By Alison Bryan | March 12th, 2008
Tonight BBC World Service, Have Your Say’s broadcast touched on the subject of genetics and what this campaign has been about. It featured Dr. Anna Middleton.
A full transcript is below, and a massive thank you to Sam Taylor for transcribing this. To the BBC: shame on yourselves, your a multi million £ organisation, where’s the access for the very people you are talking about?
If you wish to participate in discussion, you may do so here.
World Have Your Say, BBC World Service, 6pm. March 12th 2008
Ros & Shymar are the two presenters; everyone else is a guest.
Ros Atkins: Do you see blind and deaf people as a minority in society and no more disabled than anyone else?
Shymar: Hi I’m Shymar from the World Have Your Say Team. Henry from Kenya says “being deaf or blind is not a disability it’s only the society which tends to put them down. We’ve seen many great things done by some of these people, for example Stevie Wonder”. Nick in the states says “Call me insensitive but of course being deaf or blind is a disability, people with these conditions lack the ability to see or hear thus it’s a disability.”
Ros: Anuki in Israel adds the gift of hearing the world around us is something we would never want our children to miss out on especially if we had the choice.
Shymar: You can post now at WorldHaveYourSay.com
Ros: Don’t we all have physical or psychological conditions of one type or another which may restrict what we can do? Some of you are saying not being able to see or hear should be seen in that context. So should we aspire to a world without blindness and deafness? Have a listen to the people who started this debate. Tomato Lichy and his partner Paula Garfield object to a clause in the UK’s human fertilisation and embryology bill which is passing through Parliament. It would prevent them from selecting an embryo with the deafness gene if another is found without that genetic abnormality. Well communicating through a sign language interpreter they spoke today to the BBC’s Victoria Derbyshire programme.
Interpreter for Tomato Lichy: What we’re saying is we want equal rights with hearing parents. So our… 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 saying 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, you know would that mean that we wouldn’t be able to go through IVF ourselves and 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 that we’re being attacked and that’s the issue we want to get across.
Interpreter: Paula is saying 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 the embryos that have the hearing gene sort of have more right to be born than those with the deafness gene.
Interpreter: Tomato’s saying this is almost eugenics in a way, the government is forcing people to select.
Interpreter: Paula is saying who has the right to decide that embryos that have the deafness gene aren’t worthy to be born, who has that right to decide that?
Victoria Derbyshire: You obviously both feel, Paula and Tomato, extremely positive about your deafness but is it right for you to be able to make that decision on behalf an unborn child?
Interpreter: I mean if these embryos are created by IVF they are already there they already have the genes in them Paula’s saying I want to be very clear we’re not designing a deaf baby at all not creating a deaf baby if we went to IVF and there was nothing with the deafness gene in it you know if all these embryos had the hearing gene then absolutely we’d 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 this week have accused us of being selfish or disgusting they don’t know us though they can’t speak for us you know we are good parents, we give a lot of love to our child, we take her out. Tomato wishes to say something now… There are a lot of deaf associations you know who are lead 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. If we talk about other minority communities the black community, the gay community, there would be absolute outrage if you were talking about getting rid of embryos that had those genes in them.
Paula - it’s of course natural for hearing people to fear if they have a deaf child because they’re 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 you know we know how to deal with it and we completely understand that fear.
Ros: Tomato Lichy and his partner Paula Garfield speaking to the BBC’s Victoria Derbyshire earlier today. What do you make of that, you can text us…. Were you persuaded by their arguments?
Shymar: Scott in Portland Oregon says “of course embryos with any disability should be screen out quite frankly it is selfishness on the part of deaf people that they would not want this.”
Rami in Nigeria says “well I stutter, it’s part of my identity but every I pray that my child will not have that disability
Chuweze from Malawi says “My friend Sakani hardly hears anything but he is a very very fast learner I personally do not consider deafness or blindness as a disability”
Ros: Before we go on I should just say that a self confessed anorak listener has just called us to remind us that the man taking over from Eliot Spitzer is blind. Melanie is on the telephone from the UK
Melanie: Hello
Ros: What did you make of the interview that we heard there with Tomato and Paula?
Melanie: Well it was a very interesting point of view but I have a different one. I have three grown up children in their late teens and early twenties, one who was born hearing and two who were born profoundly deaf, and Tomato and Paula says that they do not consider deafness to be a disability I think that whatever label you put upon it losing one of your major sense or being born without that sense makes life a struggle. I know that my eldest child who is hearing has had a far easier path through life because he can hear, than my deaf children have. They are part of the deaf community and they cochlear implants by their own choice in their middle teens but although they go to deaf clubs and have deaf friends they want a lot more out of life than that, they want to be able to join in the worldwide community. They have careers, they’re independent travellers, but all those things are more difficult for them. And I can’t quite understand where Tomato and Paula are coming from, in thinking that to have a child… surely you want to make that child’s life as pleasant without a struggle as possible, and that’s what that child if it’s born deaf will experience in life. You know, my daughter, I said to her today, about this debate, “how would you feel if I said to you, I chose for you to be deaf because I didn’t think that it was a disability? And she said ‘I would never forgive you, why would you want that for me when it’s so hard?’
Ros: And Melanie, bearing in mind that conversation if you had known that your two children who are deaf were not going to be able to hear, might you have chosen not to have them?
Melanie: Very difficult question because I can only look at it with hindsight… I agree with what Paula says, that a lot of people are frightened of disability, because they don’t know what’s involved, and I can understand that now, I felt like that at the time, and I would certainly say that deaf people are equal in every way to hearing people, it’s just the point is that their lives are more difficult and I want my children’s lives to be easier not harder. They’ve had some very adverse reactions from other people because they’re deaf and while those barriers are there because society’s put them there, and we should try to remove them, nevertheless it is a hearing world and that’s what they want to be part of, you know, in a wider sense. For instance, independent travel is fine, but you try listening to a public announcement, it’s difficult enough when you’re hearing, they’re frequently in this situation where they don’t know what’s going on. My daughter’s been at risk in an emergency medical situation because she can’t communicate with all the hearing staff in a hearing hospital and there was no interpreter.
Ros: We appreciate you sharing your experiences Melanie, you’re welcome to carry on listening and respond to the people who are joining us. We’ve got guests in Austria, also in Helsinki and Brussels and also in the States. Let’s speak to Calypso who subscribes to the World Have Your Say email and replied to it when it arrived a few hours ago with her thoughts on this. Hi Calypso!
Calypso: Hello
Ros: Good to speak to you. What do you make of this discussion?
Calypso: Yeah, I think we should admit that blindness or deafness or whatever of course it’s a disability, but that doesn’t mean we shouldn’t…. - for example, I mean I feel OK about my disability - I mean of course I admit, of course it’s a disability…
Ros: Do you mind telling us Calypso what your disability is?
Calypso: I’m blind… I don’t mind, of course I may not be able to see things but I feel ok about it it’s not that I feel so poor, or that my life is so difficult or something, I don’t feel like that, I’m ok with it, but of course I’m disabled, I mean…
Ros: And help us understand this - if you were to have children and you could guarantee through science helping you out that you didn’t have a deaf child and you didn’t have a blind child, so that over time there weren’t any deaf people or blind people in the world, would you choose for that to happen?
Calypso: I don’t know there will always be and there should always be blind people or deaf people in the world, it’s just the way it is I think, but of course I wouldn’t want to have a blind child, of course not! Of course I would want my child to, yeah, to not be disabled, no question.
Ros: We appreciate you sharing your experience as well, thank you Calypso. Calypso in Vienna.
Shymar: Well Bethany in Oregon says ‘what happens to our species when we make everyone perfect and then the world changes? While I don’t support suffering pain in particular I don’t understand why we are so afraid of differences and different cultures. If nothing else, the scientists’ ability to work with those who are different is providing us with ever better understanding of humans.’ Ginger in Portland says ‘my husband and I tried to have children for twelve years before we were blessed with our first through fertility treatment. Our child was not deaf however, but if she were I would have welcomed her gladly and learnt to help her integrate into the world.’
Ros: Lots of people are getting in touch with us today and asking how attitudes towards deaf people and blind people vary around the world, so wherever you are do tell us where you are and tell us your perception and your attitude towards deafness and blindness. If you want to text us…. Now let’s speak to Markku Jokinen who’s president of the World Federation of the Deaf, he’s deaf himself so he’s going to be speaking to us with the help of an interpreter, he’s in Helsinki. Markku we appreciate you coming onto the BBC’s World Have Your Say. Would you like to create a world where people are not deaf and where people are not blind?
Markku: I most certainly wouldn’t, I don’t wish for that to happen. I think the world would be a much much more boring place, a lot less creative and I feel that creativity will be lost without diversity so I’m all for diversity and respecting people’s differences and I think the more diverse the world is the better our society will be.
Ros: And when you use the word creative tell us how being deaf adds to the creativity of the world.
Markku: Well first of all the deaf culture is a very visual culture, that’s the basis of the culture and the communication of the deaf and also the way of learning and interacting socially, that’s what we do, we function visually, which also has developed the visual spatial skills in our brains and this has been through science and through research, so the way that we see movement and the way we build the space around us in a visual manner, this is very developed, and this is something that we can give to sort of ordinary normal people, so to speak, those who have hearing and sight. We can teach them a different way to experience the world and different views on arts, culture and on language, through our own art, our own language and culture. And the blind can do the same from their point of view, they have very many skills that are highly developed in regards to their hearing and their sense of touch. So if you think of the world where diversity wouldn’t be taught and where people wouldn’t teach each other from the point of diversity there would be no creativity and development the wouldn’t be able and civilisations wouldn’t be able to develop.
Ros: Markku we appreciate you answering those questions, please stay with us because we may want you to respond to some more points that are being made by people who are getting in touch. Let’s speak to Lars Bosselmann, policy officer for an organisation called CBN which is an international development organisation which works with people with disabilities. Hi Lars! Hello, Lars, can you hear me? No it doesn’t seem so, so while we sort that out, let’s speak to Cara who’s on the telephone from Alabama, in the states. Hi Cara!
Cara: Hi
Ros: You can hear me, that’s good news, tell me what’s your experience on this subject, do you think that blindness and deafness should be seen as disabilities which as humans we should aspire to getting rid of?
Cara: Well I can’t speak for deafness, I was born without normal depth perception, however I don’t consider myself to be disabled, it is a disadvantage I will be the first to admit that, I’m not sure that we should strive for a society without deafness or blindness, but… I don’t think that is necessarily a good goal. I do not understand however, parents specifically choosing a child with a disability or a disadvantage to overcome.
Ros: Well I don’t think the couple who started this whole discussion are suggesting that, they’re just saying that embryos with the deaf gene shouldn’t be screened out of the fertility process.
Cara: Well I think probably we just get into the issue of IVF itself, because IVF requires the parents to make a choice and perhaps that’s the real issue?
Ros: OK. Thank you very much indeed for sharing your experiences. We’re going to hear a couple of messages before speaking to Anna Middleton who’s at Cardiff University, and Gill Daley who’s a presenter on Insight Radio in Glasgow.
Shymar: Well Steve says ‘this is really just political correctness over a word. Are blind and deaf people disabled? Of course. But the word doesn’t imply that you are less of a person, it’s just a word.’ Douglas in Canada says ‘If nature and evolution have developed humans that can see and hear then these options must be considered advantages. Whilst I do not condone selective abortion, for humans to outguess creation is simply arrogance.’
Ros: Let’s speak to Dr Anna Middleton from the Institute of Medical Genetics at Cardiff University. Good to have you on the programme Anna.
Anna: Hi there
Ros: Now one thing you can help us with is understanding the attitudes of people who are deaf and people who are blind because you spend a great deal of time speaking to them about the idea of having a child who is deaf or one who isn’t.
Anna: Yes I have. So, I’m actually a genetic counsellor, so I work in the health service and I’ll see many families who come to ask about the chances of passing on inherited conditions in their families and deafness is one of things that we do see. I’m also running a research project gathering the attitudes of many deaf families towards genetics and genetic counselling, and through the research that I’ve done and the clinical work that I’ve done I’ve met many deaf families throughout my time and with such a variety of different views and perceptions of their deafness. So for some people deafness is quite a serious disability and one which they would not want to pass on but for many it isn’t and certainly those families with lots of genetic deafness - say, they may have five, seven generations of deafness, um and they all perhaps use sign language as their first language, for those people actually being deaf really isn’t a problem at all and they don’t mind passing on deafness and some of them actually would prefer to pass on deafness because it would mean that they could share the family culture and identity and pass that on to their children.
Ros: Gill Daley, you’re the presenter of Insight Radio based in Glasgow in Scotland which is for the blind and partially sighted, good to have you on the show.
Gill: Thank you
Ros: I understand that you’ve been blind since you were nineteen years old, is that right?
Gill: That’s right. I mean I had the benefit of nineteen years of perfect sight and to go from having perfect sight to having nothing at all, I know what it’s like to be on both sides of the tennis match. I’m quite shocked actually to some of the reactions tonight, you know, why you would want to bring a child that has that disadvantage into the world at all, I mean, I’m not saying that living with a disability is the end of the world, it’s not….
Ros: But Gill, they’re not saying they actively want their child to be blind or deaf, they’re just saying allow nature to take its course, some people, not very many, but some people will be blind and will be deaf, and that does bring something to human existence.
Gill: Well why would you want, if you had the choice, if there was a choice there, why would you want to bring a child into the world with that disadvantage straight away? You know, I deal with people every day who are losing their sight, or that have lost their sight, and mothers of children that are born blind or are losing their sight, and I know what it’s like myself to go through the trauma of not being able to see.
Ros: Gill, sorry to interrupt you, but what is it like?
Gill: What is it like? It’s horrendous, but at the same time, you learn to live with it, you learn to deal with it and cope with it, and there is life beyond disability, I’m not saying that it’s all negative, it’s certainly not, I lead a very very full life, but it is, you know, I’m at a clear disadvantage - I am disabled, and I’m not going to shy away from that, but I will do my best to make the best of my life and try and encourage other people but if I had a choice, I would much rather see. And I just feel that I deal with children who are involved in youth forums, they’re amazing kids, they’re blind completely and they’re fighting every day to be recognised, to have their place in society, to be heard, to have a voice… and I just think ‘you kids are wonderful,’ but, you know, isn’t that encroaching on their childhood? Childhood should be about being carefree and I know in an ideal world children would be carefree and there would be no problems, there are problems that, you know, go beyond disability, but if you had the choice, to, you know, screen out embryos that are going to be basically….
Ros: They’re going to be blind, aren’t they? They’ve got the blindness gene, and if they have that gene there is a chance that they could be blind. Gill I’m going to jump in there because we’re coming up to the news, we’ll speak to you again after it, as we will to Douglas who became blind after the 1998 US embassy bombing in Nairobi.
This is the BBC’s World Have You Say. Is being deaf or blind a disability, and do we aspire to a time when no one is deaf or blind? Laws in the UK will encourage embryos with possible hearing problems to be ignored in fertility treatment. Do you think that’s right, or do you think they have as much right to grow into human beings as the others? Email worldhaveyoursay@bbc.co.uk
[news]
Hello, I’m Ros Atkins, we’re talking about whether we aspire to a world where there are no deaf or blind people. Fred in Texas emailed “If being deaf or blind is not a disability, I wonder what we should call it? Please let’s call a spade a spade.” Mansour is listening in Monrovia in Liberia “being blind or deaf is not a disabiltiy they must be given the chance to live as we all are.”
Shymar: Harold in Uganda says “disability does not necessarily mean inability because there are millions of examples of deaf or blind people who have had a positive impact on the communities they live or work in.” Babugan in Nigeria says “disability cannot be equated with inability, disabled embryos should not be aborted expect on health grounds”.
Ros Atkins: Douglas Siddialo is in the BBC’s Nairobi Bureau, hello Douglas
Douglas: Hello
Ros: Very good to speak to you, thanks for coming onto today’s programme, we’re talking about blindness and deafness and whether it’s something which we would all like to remove from our societies. Tell us your experience and your attitude towards this.
Douglas: For 28 years I had sight, and for the last 10 years I have had a very exciting life as a blind person. When I lost my sight in the embassy bombing I was very much traumatised.
Ros Atkins: And this is the attack on the US embassy in Nairobi in 98?
Douglas: Correct. I was so much traumatised, but eventually realised that I could not be beaten and I accepted my blindness as a challenge. So I have been picking up the pieces and moving on with my life. I lead a very positive life as a blind person, very active in sports, I climb mountains, I’m the first blind to reach the top of mount kilimanjaro, and recently I cycled the length of Africa blind from Cape Town, so despite the fact that I am blind I lead a very positive life.
Ros: Douglas, it’s inspirational to hear you talk, and I don’t know if I’d be capable of feeling how you’re feeling after what’s happened to you, but tell me, if science could fix it that every child that was born could see and could hear, would you welcome that, or do you think that blindness and deafness does bring a diversity we should treasure, into our societies?
Douglas: I think we should let nature take its own course. If one is born blind, we should support that blind person to grow up with his blindness. There’s so much that someone can do despite blindness or deafness. What one needs is support and acceptance. And I also feel that the attitude of people towards persons with disability should be positive because if we are positive and support these people they can make a huge difference in life. So I don’t feel that science should be a factor to reverse someone being blind or deaf, I just feel we should let nature take its own course and let people be what god has given them to be.
Ros: So you say let nature take it’s own course, Markku Jokinen is the president of the World Federation of the Deaf and through the help of an interpreter is speaking to us on the telephone from Helsinki. Markku do you think that nature should take its course or do you hope that sometime in the future science may be able to find a way of ensuring that no child is born which is deaf or blind.
Markku: I would rather see nature take its course, and I also want to emphsise the human rights point of view on the issue, which means that everybody is to be respect for who they are and to live on an equal basis with others. I don’t feel that we should make ethical choices in this manner because I feel that if we respect people as they are and fully respect them that means that people won’t even start to make these choices because they will be respecting the people they have around them and the ones being born. But sometimes fear or prejudice can affect us and bring with it the fact that we start choosing and choosing away certain features, for instance things we don’t know about we’d rather get rid of. So often it’s just a question of ignorance.
Ros: Markku, you’ve been with us since the beginning of the programme, I know that you need to go now, so many thanks to you and your two interpreters who’ve helped you take part in today’s programme it was a pleasure, and I hope you’ll come back on World Have Your Say again.
Shymar: Hope in Nigeria says “no parent wants a disabled child. My nephew is deaf, I find him fascinating. His other senses are extremely strong, I believe god has a plan for every child. And Amuk in Kumpala in Uganda says “let’s accept it, deafness and blindess are disabilities, that does not take away their right to be born and to live”.
Ros: Now we heard there from Markku in Helsinki, we heard from Douglas in Nairobi we heard from Pat in Kenya, and another text message saying “let nature take its course, god will decide what happens here”. Ahmad Oman is on the telephone now. Ahmad, do you share that, do you think nature should be allowed to take its course, or should we try and prevent children who are blind and deaf coming into the world?
Ahmad: Good evening. Well actually I don’t see any reason for why we should prevent the birth of this embryo because we cannot guarantee that this person will have a miserable life and will be dependent on others in the rest of his life. Actually, nobody knows, this person may achieve a great success in his life, and I am certain that people who are listening to us may have different views regarding this matter and other disability issues.
Ros: Well Ahmad you’re certainly right on that in that people do have very different views, but just quickly, tell us exactly what’s yours?
Ahmad: Well I believe disability is a socially constructed phenomenon and therefore society must be adjusted in order to enable disabled people to be integrated into society so the civil society plays an integral role in enabling us to be integrated, to be employed in mainstream, to be very well educated and so on.
Ros: OK, so you’re saying let nature take its course but society needs to do more to assist children and people who are blind and deaf. Billy’s joining us on the telephone from Liverpool. Billy would you let nature take its course, even if it meant children who are blind and children who are deaf continuing to be born for centuries to come?
Billy: No I would absolutely not let nature take its course. The idea that we should let nature take its course is completely ridiculous. If someone has a heart attack you can either rush them to intensive care and save their life or you can let nature take its course and let them die in the street. So letting nature take its course is ridiculous.
Ros: Douglas in Kenya, what would you say to Billy? He says we don’t let nature take its course when we use modern medicine all of the time so why shouldn’t we get involved here to try and prevent people experiencing being blind or being deaf?
Douglas: Well I feel that we should respect god’s creation, because blindness or deafness can be caused by other calamities. It could be through accidents, it could be through natural calamities, so even if we are advocating for science, but how would science stop an accident happening? So someone can become blind or deaf because of other natural calamities, therefore I’d just encourage that nature takes its own course.
Ros: You are right Douglas, but sadly nothing can be done if someone experiences something like yourself, where you’re caught up in a bomb attack, that of course, science can’t prevent you going blind, but if it can prevent blind children being born, isn’t that something you’d like to consider?
Douglas: Well I think it’s all about god’s creation, for us, or for me who believes in god as a christian, I feel that we should let God’s creation be, we can’t reverse it.
Ros: OK, Douglas says you can’t reverse it, let nature take its course.
Shymar: Deborah says “asking a deaf or blind person if they feel they are disabled is rather like asking a person without a sense of taste if they feel that food is bland to them. There is a need to give respect to those whose senses are challenged; lacking a sight, hearing, taste, touch or smell are respected as members of society with full rights and access. Of course, these people should have the full rights and respect.” And Jeff says “If being blind is a disability then so is being short. You can’t reach the same shelf that a tall person can. Yes this is about semantics, however, we interpret reality through language and so the disabled are only disabled by the linguistic reality we construct around them. Different is a more moral word for this application than disabled.”
Ros: Dr Anna Middleton’s been listening carefully from Cardiff University, she’s at the Institute of Medical Genetics. Anna, since I last spoke to you, the whole conversation has swayed onto whether science should get involved in this issue. You’re a scientist, do you think you should get involved?
Anna: I think it’s very very interesting isn’t it? And up until very recently it was only possible to test for life threatening serious conditions in this manner, so what we are talking about is pre-implantation diagnosis, so that’s testing, doing a genetic test on the embryo before it is implanted in the IVF process, and so in the past we could only test for serious conditions and it seemed to be quite clear cut that people wanted that, so, say, for families who had lost several children due to a serious genetic condition, several children had died already, this technology offered them a lifeline and a possibility and a chance to have healthy children. And most people generally agree that that’s a good thing. But now it’s possible to test for deafness and the question is really is it a step too far, is deafness a serious enough condition to be wanting to test for in this manner at that stage, and also, should the government really be getting involved in this? Is it up to the government to decide on whether people should have deaf or hearing children? And that’s a very sort of key issue in this. And if we’re to turn back to our speaker from Glasgow, Gill, she seemed to think that she would want to have a test for deafness and the she would only want to implant the hearing embryos, and I wonder whether if we do this for deafness then what else that is non-serious should we also do it for, and where do we draw the line and where does this end?
Ros: Gill, are you still listening?
Gill: I am indeed, and actually its a fair point, because I was just thinking myself if this couple were told that they were going to have, that there were embryos there that were blind children or Down’s Syndrome or something else, would they be as keen to, you know, keep those embryos as well? To be fair they know their disability, they know what to expect, but I just think it’s rather unfair to, you know, this child… this potential child has no choice in the matter. And you know, I’m not saying that disability should be…. it would be lovely if nobody had to suffer in any way at all, I just think life is just enough for people who are fully able bodied, and to put a child through an unnecessary struggle in their early years is just a shame, when it needn’t be the case.
Anna: I think that’s a very valid point, and I just wonder whether the decisions surrounding this should be left to individual parents, because no parent would ever go through any of this technology lightly, it’s not easy to have IVF and the pre-implantation genetic diagnosis doesn’t always work, you know, it’s very expensive and it’s very difficult to get. Nobody would go through this process lightly. And I wonder whether, given all the counselling and the support that the professionals can give whether it should be just up to the parents to decide what’s right for them, should the government be making these decisions? I think that’s a good question for us.
Gill: I understand what you’re saying, I have to say I lost my sight twelve years ago now and I have done the most amazing things since I lost my sight because I’ve been driven, because I’ve had to, you know, I’ve had to struggle, I’ve had to fight to prove people wrong, my first name became “Poor” when I lost my sight, everyone knew me as “Poor Gill” and if anything I’ve tried my best to be somebody that other blind people losing their site can maybe draw from my experience. See if I can help one person have a lesser struggle then I have, and help educated people about disability, then I know I am doing my job, and I love my job, and I love the people I deal with, don’t get me wrong.but I do think that it would be a lovely world… I had the benefit of nineteen years of perfect sight, and there are so many beautiful things that I miss, and for people that have never heard anything, ok, that’s a way of life for them, they don’t know anything different, but think of the beautiful music, the wonderful conversations, all the lovely sounds that their children could possibly hear.
Ros: Gill, do you, sorry to interrupt you, do you still miss it every day?
Gill: Oh gosh yes, you know I’ve come to terms with losing my sight and it’s something I know I will never get back and there’s no point in harbouring it and feeling down but you know every morning I wake up and there’s always that little bit of disappointment because you think…. you know it’d be lovely. Because I dream very visually, when I dream, it’s so visual, so waking up the morning, it’s almost like a disappointment. But you push that aside very quickly, and you get on with life, and you try your best to help others, and that’s what my job is all about, trying to inform and educate others and make their lives a little bit easier if possible.
Ros: Well, Gill in Glasgow, and Anna in Cardiff and Douglas in Nairobi, as we’ve been talking the screen, which I have in front of me which tells me those of you which are calling in and people which are joining the conversation, has filled up. We still have Billy in Liverpool, we now have Gertrude in Akhra, Justin in Arizona, and Lily in Singapore. We’re going to hear a couple of messages, and then I’ll come and speak to you all.
Shymar: Well Jonathan says “If blindness and deafness is a disability then what about other disabilities? I’m dyslexic and I have problems in life. Should I have been screened out?” Ellen from Brooklyn says “Eliot Spitzer is no longer governor of NY State, I guess the irony on that is that the successor is a blind black man. If a blind man can be governor maybe we should no longer go on to manipulate nature?”
Ros: What would be interesting would be if we could ask him to come on the programme, but I suspect he’s dealing with a few interview requests at the moment, so hat may be a little bit difficult. OK, let’s start with Lily in Singapore who’s just joined us. Lily, do you hope for a world in the future where no children are born blind or deaf?
Lily: No I don’t. Because I feel that the world will be a better place and people will be more tolerant of one another. It’s like Singapore, we are a very asian culture, I’m a blind person living in Singapore and children ask their parents who do not know how to approach me, the children say “how come she’s like this” and the parents just don’t know how to answer their children, so I have to come and tell the children why have I been like that, and I think it is educating the children that the world is never perfect. So and also another thing is that if there are disabled people in this world, if somebody would be disabled due to natural calamities or what Gill had gone through, the person without disability can stand by his or her side to tell and encourage her and to say life is still interesting and you can still live your life to the full and there is nothing that can restrict you apart from the disability that you are having and you can still live your life to the full.
Ros: OK Lily, so before I go to Gertrude and Justin, let me go to Gill, because Lily is saying, contradicting what you’re saying “look, this does enrich the society we live in, it helps tolerance” are you not persuaded by that argument?
Gill: I’m just not, I’m afraid not because you know I’ve had to live with this for twelve years and yes, I mean blind people, disabled people, they add so much, but this is not what we’re talking about, we’re talking about the future, the future generations, and you know I look at stories every day of blind people being mugged, of deaf people being mugged, people taking advantage of people, of other people’s disabilities, now you can’t tell me that, you know, the world is a more tolerant place because of disabled people, it’s just not true. We hear every day of disabled people being attacked and mugged and taken advantage of, and, you know, I’ve been taken advantage of since I lost my sight in a few different ways, and I just think had I not been blind that woulnd’t have happaned. You know, I was attacked a few years ago, very very badly, and I ended up in hospital, and my two attackers, it was in broad daylight, they targeted me because they saw my guide dog, so you can’t tell me that people are going to be more tolerant for having disabled people in the world. It’s not about disabled people themselves, it’s about making life easier. And has anybody thought about the tax-payers? I’m a tax payer, I know a lot of my money goes into disability benefit.
Ros: OK, I’m going to jump in there Gill, because I think a lot of people today aren’t talking about the money, it’s more about the moral issue that’s at stake here, and as you were talking I’ve just been told by my colleague Rabia that we’ve got another guest who’s just arrived in Nairobi, and let’s speak to him. He’s deaf, he’s called Solomon, so we’re going to speak to him through an interpreter. Solomon how do feel like you’re treated and accepted in Kenyan society?
Solomon: OK, the deaf have been so much marginalised in Kenya, mainly because in Kenya we see that we don’t have a member of parliament who is our own. Even in the nomination we were not considered, and so we continue to suffer so much, both parties did not consider the deaf people. But in Uganda we’ve seen they have a deaf MP, and a blind MP, and a physically handicapped MP, but for persons with disabilities, we do not have a representative in Kenya. We have the disabilities act which started in 2003 but it is not implemented.
Ros: And Solomon, let me just interrupt you because we are coming to the end of the programme; help me understand this - do you wish if science could give it to you, that no children would be born blind or deaf?
Solomon: It is sometimes inevitable because of their situation and their societies, and so it is something that we cannot prevent, whether someone chooses to be deaf or disabled.
Ros: Just before we finish the programme, Justin is on the telephone from Phoenix. Justin, we haven’t got a great deal of time, I know you’re blind because you’ve been in touch with World Have Your Say for over two years- do you feel like you’ve got a disability? Do you want all blindness to be eradicated if that’s possible?
Justin: No, not at all, heavens, I certainly hope not. I we want that, we need to start praying to our gods, goats, whatever, for our version of paradise, at that point we can want that, but it certainly shouldn’t happen down here.
Ros: Good to speak to you Justin, thanks very much indeed, and thanks also to Gill in Glasgow, and Dr Anna Middleton from Cardiff University as well, it’s been fascinating listening to you both. Garfield Simon in Jamaica listening on FM says “some of the world’s most inspirational people have been disabled and the world wouldn’t be the same without their influence. And this is from Chris in LA “Isn’t it ironic that we’re debating deafness on the Radio?” well I don’t know that it is Chris, but thanks for your email.
Shymar: Steve in the USA says “I chuckled when I heard people talking about god and god’s creation, and let nature take its course. Some people are born psychopaths and become murderers; that’s god’s creation and nature taking its course too. Do we think that’s also good.” Jung-Mai says “this political correctness is all ridiculous, the reason we have eyes and ears is that we need to see and hear”.
[END OF PROGRAMME]
Posted in Media Campaign | 3 Comments »
By Alison Bryan | March 12th, 2008
Yesterday’s BBC Radio 4’s Today featured Lord Winston and Professor David Jones (note link will be inappropriate a week later, broadcast Tuesday 11 March 2008). Both discussed the Human Fertilisation and Embryology Bill, with specific reference to wanting deaf babies. Below is a transcript, with thanks to Neil Corry (shame on the BBC for not providing access, again):
John Humphries: As far as you’re concerned Lord Winston, your reaction to what that man said on this programme yesterday, accepting that there will be very few cases where this choice would have to be made.
LW: I think there was a misunderstanding there, because I think that no government, and certainly not this one, is intending to enforce screening on embryos for particular individuals. And the implication there was that this person would have the screening. I think that there really is another misunderstanding that the screening process is very complex, and quite invasive and may carry risks, and therefore would not be done for trivial purposes. And the idea of deliberately screening an embryo to ensure that you had a deaf child is not something in anybody’s mind –
JH: (interrupting) But you MIGHT screen an embryo so you DIDN’T have a deaf child…(CAPS, his emphasis)
LW: On request of the parents, on might
[talking together]
JH: Exactly.
LW: But parental autonomy would be very important there.
JH: And you, Professor [David] Jones, are opposed to the idea of screening, full stop.
DJ: I think one thing that I would welcome in the current bill is the decision not to have screening for sex selection. And I think that it’s interesting if we can compare that to the selection of a deaf child, or a hearing child. We say, er, we do, we’re in favour of, of parental choice and parental responsibility, but a parent shouldn’t say, “Because I want, er, a girl rather than a boy, or a boy rather than a girl, I have selection.” In the same way, I think, if we really think that a deaf child, once born, is equal as a citizen, we shouldn’t say, “I will select OUT a deaf child.” We shouldn’t say, “I will select FOR a deaf child.” We should say, “I will make the best provision for deaf or hearing children when they’re born.”
JH: Lord Winston?
LW: We live in a pluralistic society, and the issue surely must be that we should try to accommodate that society in the best way we can. And, therefore, the key thing must be the [unclear word] the people that suffer these diseases, and really, I think the argument is being diverted from the real issues. The real issues are that pre-implantation diagnosis should be used, in my view, for those diseases that kill children very early on, and that’s where they are being used. And, on the whole, nobody’s suggesting seriously, clinically, that we should start screening for deafness one way or the other. As far as I know that’s never been done, and indeed most causes of deafness wouldn’t be suitable because they’re not –
JH: (interrupting) But you are saying that screening before implantation to screen out, er, certain conditions.
LW: Only on request, and those requests come from parents who have already lost a child. What normally happens – and they’re pretty rare, there are about 6000 diseases but very few of them are very common – people have lost a child at the age of two, three, or four, they realise they have a genetic defect, they don’t want to go through that terrible trauma again, and they therefore request to have IVF with a view to have an embryo randomly selected but which does not have that specific gene defect.
JH: And are you happy with that Professor Jones?
DJ: Erm… I’m not happy with that. Clearly, people who have suffered in this way, they want to minimise their, their chances of the same thing happening again, and I completely understand why.
JH: They want to eliminate it, don’t they, if possible?
DJ: Yes, but the elimination of all risk is not something that is possible. But I think that the…, I don’t think it’s actually, er, I think that the [unclear] recently made a decision about also selecting for later onset conditions, and not only for conditions which are there at birth. I think there is an issue of looking towards, erm, the selection of children in general, and thinking of the child as something which, the characteristics of the child which is selected. I think there is an issue here and obviously these sort of cases of a child who died this early, this is, these are the cases which are, which cause us the most heartache, but we’re still on a continuum which is about exercising control over a child by selection, saying that there will be certain embryos that we will throw away, or that there are certain features we will throw away. That’s the problem I have.
JH: But why should there not be that selection, if the result of it is a child that is not born with some dreadful disease? Isn’t the future wellbeing of the potential child what is paramount here?
DJ: I think there is a difference between if you HAVE an individual, how to best make the future for that individual, how to improve the health of that individual or treat the individual. I think that’s one sort of thing, and I think it’s a different thing for –
JH: In other words, if the child has already been born, then you –
DJ: I would say ‘already conceived’, because there is, er, and here obviously, there is a plurality of opinion about this, about how early we will push it, and for some people, er, it’s when the child is born. Some people would say, if it’s going to be disabled then we shouldn’t treat very new infants who are very seriously handicapped. We’re not there in society and I am very happy about that. Some people would say, as a foetus, you can have, erm, abortion for reason of disability and we have that much later for other abortions, I think that, myself, is scandalous. But I think that for all these technologies, even for PGD, sorry, even for screening embryos, we are talking about, saying this embryo has a flaw, we will throw it away. I think that’s the problem that I have. It’s the, it’s the notion of selection and de-selection, it’s the destroying, not that you want to make the best for the ones you’ve implanted, it’s the attitude towards what is able to be cast aside.
JH: Lord Winston, throwing away an embryo…
LW: Well this is Professor Jones’ assertion.
JH: Well, it happens!
LW: Well I do sympathise with his view because, of course, the Catholic church actually doesn’t approve of IVF at all, and so he has a problem here, as he doesn’t even approve of contraception. These are both methods of, both technologies that are widely used in our general population, and broadly accepted by people.
JH: There is a difference between contraception and throwing away – to use –
LW: (interrupting) No, because IVF wastes embryos all the time, as does nature. About 18% of embryos normally implant, and that’s what happens in in-vitro fertilisation, too. And another point that Professor Jones has omitted to mention is that nature herself, screens for these so-called defective embryos…
JH: Yes, but that’s nature doing it.
LW: Well, the difference about nature helping, being helped by medicine seems to be appropriate. What happens with many of these genetic disorders, if not all of them, is that most of these embryos do not survive implantation. What pre-implantation diagnosis does is to help that process more effectively –
JH: So you’re aiding life, Professor Jones, rather than discarding life.
DJ: What [sighs heavily]… It is true that nature can be very cruel, and it’s true that the, the, basically the earlier you go in life, the more vulnerable life is. Obviously newborn children are very vulnerable, are [couldn’t hear] are very vulnerable, obviously the embryos are at the most vulnerable stage, and many of them will not survive. I don’t think that’s an argument for saying, “Because many wouldn’t survive, WE will decide who survives. WE will decide what doesn’t survive, on the basis of certain conditions where it’s better not to be born with.”
JH: A very quick final though, Lord Winstone. We’ve run out of time. Is it a slippery slope?
[TALKING OVER ONE ANOTHER, VERY BRIEFLY]
LW: It’s a slippery slope, but with speed limits. You know, you have arbitrary decisions and, of course, you have regulations. But I think that there’s a nonsense here, there’s a notion here that people like myself don’t want to see society properly caring for people who have diseases which are produced genetically. That’s not true. But, unfortunately, Professor Jones has not seen the stress and severe these families suffer. And once you’ve seen that, you understand that they have a decision that is difficult to make, which they’re taking, largely, for ethical reasons. That’s the commonest reason people have PGD [?], pre-implantation diagnosis.
JH: Lord Winston, Professor Jones, thank you very much.
JH = JOHN HUMPHRIES, LW = LORD WINSTON, DJ = PROFESSOR DAVID JONES
Posted in Media Campaign | 4 Comments »
By Alison Bryan | March 11th, 2008
Firstly, for those of you in the UK, tomorrow BBC Breakfast will air an interview with the RNID (7.10am) and also Tomato Lichy plus Paula Garfield (8.10am). Dr. Steve Emery will be appearing on BBC Radio 4, The Moral Maze (8.00-8.45pm). Irrespective of where you are located, you should be able to participate in debate online afterwards and we would actively encourage you to do so. We will try and make available media on this blog.
Things have taken a faster pace in the UK, and within the last two days here’s media covering this issue (in response to Clause 14(4)(9), which this campaign is about).
Radio:
BBC Radio 4: Today
BBC Radio 2: The Jeremy Vine Show
BBC Radio 4: Women’s Hour
BBC Online Discussion:
BBC Radio 4: Women’s Hour
BBC Radio 4: Today
BBC Radio 2: The Jeremy Vine Show
BBC Radio 4: The Moral Maze
UK Broadsheet Newspapers:
The Observer: This couple want a deaf child. Should we try to stop them?
The Independent: Dominic Lawson: Of course a deaf couple want a deaf child
The Telegraph: Couple who want deaf child angry at IVF ban
The Guardian: Rebecca Atkinson: My baby, right or wrong
The Times: Choosing a deaf baby is criminal
The Daily Mail: ‘Creating a deaf child IS immoral and no parent should be allowed to choose this for their child’
Newspaper / Media Blogs:
Guardian: Cathy Heffernan, The hearing’s difficulties
The Times: India Knight, “Where pro-choice feminism collides with disability rights”
Times Online: India Knight, More on ‘the right to be deaf’
BBC Ouch: Rebecca Atkinson: When disability becomes illegal: “We can screen abnormalities out before birth, but should we?”
Blogs:
Dr Steve Emery: Eugenics in UK: the debate suddenly takes off and hots up!
Grumpy Old Deafies: Genetics: BBC Radio Transcript Links & BBC lack of impartiality
All The Young Dudes: MEDIA WATCH: A Cacophonous Din of Ignorance & A Sane Voice [More Linx]
All The Young Dudes: Media Watch: A Sane Voice Amidst A Cacophony of Ignorance
All The Young Dudes: Media Watch: Hearing People Still Don’t Get It! No They Don’t!
All The Young Dudes: Media Watch: Hearing People Don’t Get It! Or Do They?
Nothing To Do With Arbroath: This couple want a deaf child. Should we try to stop them?
JivinJehoshaphat: Life Links 3/10/08
Secondhand Smoke: At the Crossroads of Eugenics and Solipsism: Engineering a Culture of Death
Dr Rant: Deafness is a disablity, fuckwit
bioethics.com: This couple want a deaf child. Should we try to stop them?
Earthquake Cove: Should parents be able to choose a deaf baby?
The Human Future: Wanted Another deaf child
The Human Future: Artificial Sperm to be Allowed for Babymaking
19th Floor: Not Worthy
Steve Shickles: This couple want a deaf child. Should we try to stop them?
Futurismic: Ethics and embryology - should deaf parents be allowed to choose a deaf child?
Curiouser and Curiouser: Selecting for deaf children seems crazy to me
Rot Watch: Deaf Babies
Peter Bracken: Is deafness a disability?
Bionic Ear: UK IVF Couple Wants Deaf Child
Mishka Zena: Eugenics Too Close To Home: Tomato Lichy, U.K. Activist
Mishka Zena: Should Deaf Parents Have a Deaf Child?
The Not-Quite-So-Friendly Humanist: Reverse Eugenics
JoJo Moyes: A deaf child - not your right to choose
Mike Gulliver’s Blog: Response to John Humphries
Unenlightened Commentary: Designing Disability
Tory Radio: blind to common sense
Disability Nation: Controversy in the UK
Charles On …. Anything That Comes Along: Props to John Humphries on the deaf issue
Current Awareness: Couple who want deaf child angry at IVF ban - Daily Telegraph
Posted in Uncategorized | 12 Comments »
By Alison Bryan | January 10th, 2008
If so could you please contact BBC See Hear team by e mailing:
david (dot) street (at) bbc (dot) co (dot) uk
(make obvious changes to the e mail address).
Its in relation to a programme on the Human Fertilisation and Embryology Bill. Thanks.
Posted in Media Campaign | 1 Comment »
By Dr. Steve Emery | December 22nd, 2007
This blog post relates to this article in the Sunday Times.
After four weeks in which a group of us have carefully investigated and analysed Clause 14 (4) (9) of the Human Fertilisation and Embryology Bill, the Sunday Times covers the story in typically ‘sensational’ fashion.
The most unforeseen aspect of the article for those of us painstakingly trying to build a campaign against the Clause 14(4)(9) is that it is the RNID who are at the centre of the story, even thought they have not been involved in the campaign. It makes sense though from a media perspective: Jackie Ballard, the CEO of the RNID, is also an ex-Liberal Democrat MP, and therefore it makes better ‘news value’ to focus the story on an individual who has some kind of status in the world of politics and business (the business being a charity in this case).
The article is very much to be expected:
* the story is being spun as a demand of Deaf people to create designer children – i.e. a sensational angle for an almost entirely hearing readership;
* misinformation with regards to the US case (it has happened there and they want it to happen here);
* the campaign being centred on a demand for ‘rights’ to choose the make up of a child pre-birth.
The RNID comes across as contradictory in the article; Jackie Ballard is quoted as saying the RNID believes parents should not be prevented from children being born deaf, but later on the RNID spokesperson states that they would not actively encourage the choosing of a deaf embryo over a hearing one!
The campaign that is being launched to stop Clause 14(4)(9) has already been seriously misrepresented by a high ranking newspaper such as the Times. If this is the news being reported from a supposedly respected broadsheet, one dreads to think what the tabloids will make of it.
The Sunday Times seems to have missed the simple fact that this particular Clause is only applying to those seeking IVF treatment.
It also ignores the fact that the campaign that is being launched is not one that has been set up to ‘demand’ the ‘choice’ of ‘genetic abnormality’.
Therein lies an irony; Clause 14(4)(9) is specifically aimed to ensure the creation of a hearing/non-disabled child. Yes, there is a ‘designer baby ’issue here, but the Clause is aimed to ensure the baby is hearing or non-disabled.
The key word in the Clause 14(4)(9) is the word ‘preferred’. IF a couple decide to have a test at IVF stage and IF there are found to deaf and hearing embryos; a hearing embryo MUST be used. Individuals who WANT to have a deaf embryo will simply not take the test, because they know that they won’t have the choice; but individuals who WANT to have a hearing embryo WILL be able to take the test, because it gives them the ability to have the hearing embryo implanted, and to have the deaf ones discarded.
Those who want a deaf embryo, therefore, are being BANNED from doing so; those who want a hearing embryo, aren’t. Discrimination, pure and simple.
Deaf people have reacted to this, because it means that if it becomes law, Clause 14(4)(9) bans a parent from choosing a deaf embryo at the IVF stage, IF they so desire to do so. I make heavy use of the word IF for a reason – only a tiny percentage of people will actually want to do this, but while this is so, it is when clauses like this become law that it becomes not only harder to get them changed, but also easier to develop them in other ways.
You only have to read Professor Gedis Grudzinskas quote in the article to see how this might develop. Deafness, he says, is not the ‘normal’ state. Gay and lesbian people, Black and ethnic minority people (in the UK), also are not ‘normal’ in our society (i.e. they are a minority in majority), so should they also be banned from using technology, if the gay gene or the black gene be identified?
Deafness is being defined as a ‘disability’; which of course ignores the fact that being Deaf is about having a unique language and culture, one that has existed for as long as humans have been on planet earth. Deaf people have been striving for 30 years to bring to awareness to the public of Deaf people’s linguistic minority status, with some success.
The UK government actually recognised BSL as a language in its own right, on 18th March 2003 to be exact. There has been a huge explosion in sign language classes in the last 20 years, with something like 400,000 hearing people learning sign language, having been taught mainly by Deaf people proficient in the language. And the value of sign language is confirmed by another explosion: hearing people with hearing babies are teaching their children to sign before they speak…because it is easier to communicate with their children earlier in their life by using gestures and signs.
Deaf people are recognised as possessing a real, true language, no different from any spoken language other than it being of a different modality. This is also evidence of the value that Deaf people and their language and culture bring to society.
Deaf people being of a language minority: so does that mean that those who are also of a language minority – Welsh, Gaelic, Cornish etc – should be banned from using technology if somehow a ‘language gene’ was identified? After all, these languages are not ‘normal’ in our society, and are spoken by a minority.
The majority of citizens would object to denying black people, gay people, linguistic minority groups, or any other group that is a minority, to choose an embryo that closely resembled themselves, but the argument persists that deaf people and disabled people are somehow not ‘normal’; the article refers to hearing embryos as ‘healthy’; which in turn implies the deaf ones are ‘unhealthy’. The hearing gene being ‘healthy’ therefore justifies enforcing individuals to choose (or ‘prefer’) such an embryo, if they have a test that identifies such genes in embryos created from IVF.
The campaign is not one that is being launched specifically to try to give people the right to create a deaf baby; it is one that has been launched as a reaction to Clause 14(4)(9). As Francis Murphy put it in the article, if embryo’s are allowed to be chosen on the basis they are hearing, the same choice should be allowed for those who are deaf.
But the whole article misses a far more fundamental point: our entire society is built on diversity, and deaf people and disabled people have always been part of that diversity. Once you start passing laws to ensure that some of the people who have been part of a diverse society shouldn’t be ‘preferred’ over others, you begin to ‘play god’ with humanity. Deaf people have brought something to societies and to our understanding of what it means to be human; sign language and Deaf culture are not ‘abnormalities’, Deaf and disabled people are not ill or unhealthy; they are artists, lawyers, workers of all trades and skills, abilities, professions…this author and many other Deaf people around the world hold a PhD, and those like Stephen Hawking have made invaluable contributions to science and knowledge.
The Sunday Times is meant to be a broadsheet newspaper that explores issues with thought and depth. But in this article, it has seriously failed in that respect, and leaves us with far more questions than there are answers.
In the New Year, a group of concerned citizens who have coalesced around the www.stopeugenics.org website, will launch a Press Release calling for Clause 14(4)(9) to be discarded.
The simple outcome of the scrapping of the clause is that individuals will not then have to ‘prefer’ a deaf or hearing embryo. For us in the campaign, there should be no ‘preference’ of an embryo; they should be treated as equals.
We do not seek to remove the entire Clause, just the specific part of it that would enforce a couple to ‘prefer’ a hearing embryo over a deaf one. It is discriminatory and tries to ban deaf (and disabled people) from doing something that would be freely available to others. But more seriously of all, it is a step towards eugenics, since it will mean that couples going for IVF can design a baby, in this case, they can ensure it is a hearing one. And if it can be available to ensure the baby is hearing, the next step could be: why not ensure it can also be blue eyed, blonde, straight, etc.
As many people as possible are needed to come forward and sign the press release before it is sent out to the general press in the New Year, and to get involved with the campaign in whatever way you can.
This part of the Clause simply must be stopped and misleading and misinformed reports like those in the Sunday Times today must be urgently countered as part of that campaign.
Posted in Media Campaign | 12 Comments »
By Alison Bryan | December 22nd, 2007
Today the Sunday Times is carrying an article on “Deaf demand the right to designer deaf children“, which is supposed to be an article on this campaign. Except it totally misrepresents what this campaign is about! We were predicting sensationalism, and misrepresentation in order to making hearing people choke on their cornflakes over breakfast, but there’s nothing like seeing this in print. In the interests of transparency, these are the e mails that I sent to Sarah-Kate
21 December 2007
Hi Sarah-Kate
You contacted Francis Murphy at the BDA regarding the Stop Eugenics campaign. Further information is available on our website here: stopeugenics.orgThe campaign originally came about from a post (written by me) on Grumpy Old Deafies, and there was a lot of anger from Deaf people over this issue (see ome of the comments as an example). Consequently we set up the Stop Eugenics movement, to respond to this Bill.
Subsequently the BDA lent its support to the campaign, acting as a espondent agent on behalf of the UK Deaf community. A copy of the BDA’s letter can be found here.
The NDCS then responded with its Press Release.
[Side note to readers: neither organisation is behind this campaign, and this campaign is independent].
A Press Release is due to be released by Stop Eugenics, and we are currently collecting signatories (this was only sent out today). You can find a PDF of this here.
For background reading, you might also be interested in reading this.
In terms of your specific questions:
[Sunday Times comment] We understand there are some deaf people who are opposed to this clause because they believe the parents should be allowed to choose a deaf embryo instead of a hearing one if that is their choice.
This is not just about deaf people opposing the clause, but others are against it too. It has much wider implications than deaf people. Not just disabled people either, but statements from the government who is permitted to exist and who is not, and moreover who is or is not permitted to reproduce.
We are seeking reproductive liberty, and the right to choose since screening will be legal in these circumstances. General reproductive liberty in the UK is not absolute, since for example the Bill bans sex selection, or selection on the basis of traits; and eugenics is cited as a reason behind this, and also population demographics.
However, the Bill seeks to make “serious disease” a special case, and allows for selection on the basis of “abnormalities”. Screening is already in place, however, the Bill seeks to go one step further and curtails basic reproductive freedoms within the framework of selection. Defining who is permitted to reproduce, and which class of human embryo are permitted to be developed. For a government to make statements around this, we regard as a move towards eugenics.
The clause makes a very clear statement around the one way nature of selection. i.e. you are allowed to select (what some medic defines) as “healthy”, in favour of a “diseased” embryo. Yet it does not work the other way. There is no equal choice, and whether e.g. deaf person wants to pick a deaf embryo or not is immaterial, as on a policy level there is a clear statement around interference over a right of reproduction and existence. Any move to discriminate against certain classes of embryos from being developed is a move towards eugenics.
The wording of clause 14(4)(9) also refers to “persons”, in other words gamete egg or sperm donors. The current wording would likely prevent those who carry deaf genes (amongst others) from being egg or sperm donors. This already exists within guidance (see HFEA Making Babies document), but parliament is pushing this further and seeks to make this law.
Current guidance also prohibits those with severe refractive errors from being donors, would the population who wears glasses be happy with this?
[Sunday Times comment] We understand that most deaf people would choose to put back a hearing embryo instead of a deaf embryo but believe some people in the disability movement believe the choice should be left with the parents.
Very few people would not undergo screening in the first place, and relatively few go down this route, deaf people included. In terms of deafness, only one gene can currently be tested for, Connexin 26, and this could change in future (it is thought there’s over 100 hereditary genes in relation to deafness).
Since parliament is allowing for selection in these circumstances, then choice should be allowed in that it should not be permitted to discriminate against certain classes of embryos.
When it comes to IVF guidance already states that there must be a match the physical traits of the parents (or mother if not part of a couple, and undertaking IVF alone). Who said deafness is not a trait, and who has the right to define us as diseased? Where does traits being and end, and who has the right to define this?
For example, skin colour is a trait. A black person might encounter many barriers in their lifetime, but public policy or parliament would not seek to label to label them as defective because of society barriers or attitude, or issue statements that they do not have the right to life. That argument is absurd, and would be a statement of prevention of certain births within a group, yet is readily applied to deaf people.
Another example, I’m also Welsh and come from a family that uses a minority language (Welsh). Welsh people can cost the taxpayer a lot of money, yet no-one would contemplate trying to send a Bill through parliament telling Welsh people they could not become donors, or set up measures with the view of curtailing the reproductive freedoms of Welsh people. On a policy reasoning level, such a group of people could be classed as expensive to society, thus lets curtail their right to life. Yet it would not happen, because it does not fall within a medical definition. Who has the right to give us that label?
The UN Convention on the Prevention and Punishment of the Crime of Genocide states:
“Article 2
In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:
…………..
(d) Imposing measures intended to prevent births within the group;”
Whilst legally deaf people might not fit within the definition of ethnicity, deaf people will identify as such and display the characteristics of an ethnic group. Parliament is seeking to impose measures through a) non selection of certain embryos from existing and b) gamete donors, and thus perceived as an act of genocide.
What if someone wanted their deaf friend to assist with IVF via a clinic? Under this clause they would not be allowed to do it. The government is seeking to curb this, by making statements that a) we shouldn’t be here / we are second class citizens and b) curb our basic reproductive freedoms, and prevention of births with in certain group. This goes against statements of inclusive policy.
The government (Department of Health, parliament) to date as far as we are aware has not consulted with us, despite its claimed “wide spread” consultation. The Disability Equality Duty places an obligation on public services for “public authorities [including the DoH] take responsibility for tackling institutional disability-related discrimination”, and to undertake measures to include us. However, I’ve yet to see ANY evidence of us being consulted about issues that have a direct impact on us (and it is deaf people that has been specifically referred to in policy reasoning).
During parliamentary consultation of this Bill, and in the government’s report (2007):
“Andrea Minichiello Williams, Public Policy Director, Lawyers Christian Fellowship, expressed the wish that a disability group wasrepresented.” Page 100
So why wasn’t this followed up, furthermore is the government breaking its own law?
Since there has been no consultation that we are aware of, how much do these people know about us? For example, during this debate on this Bill a peer in the House of Lords seemed to think that deafness was a “life threatening” and a “fatal” condition. A person with this kind of ignorance that gets a say in whether we have the right to exist, over and above asking deaf people themselves?
Should you have any other questions, please do not hesitate to contact us.
Many thanks, Alison
______________________________
21 December 2007
Alison,
Thank you very much for all this very helpful information.
I have spoken to Rachel Hirst who said she had signed your press release. Can you please email me a list of organisations who have signed up to your campaign to allow parents to be able to choose to implant an embryo with an abnormality if that is their choice?
Kind regards
Sarah-Kate Templeton
21 December 2007
Sarah-KateThis is the letter, and currently a working document. We only started collecting names yesterday, and far from complete etc. We were aiming to pull this together by January 2008 (PR dated for then), but as you may appreciate its Christmas and many people are unavailable.Please note the wording of the letter, which is trying to drive home reproductive liberty rests in the hands of parents since selection is being allowed in this instance, and non discrimination or rather how deaf people amongst others are perceived in law /policy. This might not be the same sensational angle you might be hoping to paint deaf people amongst others in.
21 December 2007
Thank you Alison for this additional information.
Kind regards, Sarah-Kate Templeton
21 December 2007
Sarah-Kate
One other thing, and something I noticed earlier but wanted to pick up on:
“I have spoken to Rachel Hirst who said she had signed your press release. Can you please email me a list of organisations who have signed up to your campaign to allow parents to be able to choose to implant an embryo with an abnormality if that is their choice?”
What’s abnormal? Who decides we are abnormal? Who has the right to label us as that including medicine?
Are black people abnormal too, because they don’t come up to some wider ideal, fit within traditional society structures and encounter discrimination on a daily basis through bad attitude and media stereotypes? This is not about abnormality but diversity, and bottom line is we are all people with the same right to exist and reproduce.
Do you have the right to label deaf people including me (or other groups) with an abnormality? Why is deaf people to hearing, any different from say Black to white people?
On an entirely *personal* note, *to me* a deaf or hearing embryo is no different from a boy or a girl. One is not better over the other. However, when parliament seeks to go down the path of telling individuals stating that one must be preferred over another Parliament would not seek to attempt to pass a law to say if you are going for selection on the basis of gender, you are only allow to choose boys, but you are never allowed to pick a girl. How would females (including you) feel about that? Whilst most people would not go for gender selection (in the same way as most people would not go for deaf/hearing selection), the imbalance in policy (because selection is being treated as a unique case in these circumstances) is still there. Swap gender for deaf / hearing, and you might have an inkling of what I feel about this issue.
Alison
Now can someone please tell me how the above comments transpired into this article, including what we stand for? Including statements such as, “Deaf demand right to designer deaf children”? The media likes to paint Deaf people in a particular light, and is totally ignoring the eugenics issues around wider policy and how we are having to respond to it. More about my thoughts on the RNID later.
Posted in Media Campaign | 13 Comments »
By Philippa Merricks | December 20th, 2007
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.
Posted in Media Campaign, eugenics | 1 Comment »
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