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]
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