Eugenics Too Close To Home: Tomato Lichy, U.K. Activist
When this eugenics bill at UK was first brought to our attention, they were greeted with moral outrage and concerns by Deaf Community along with other disability groups. Still fresh in their minds were the the horrific American and Nazi Eugenics performed over half a century ago with the involuntary sterilization of the ’physically defective” and “morally unfit” people. These procedures led massive exterminations of people with mental illness and developmental delays performed at the beginning in Nazi Germany. The programs eventually expanded into systematic eradications of undesirable minorities, including races, religions, and sexual orientation, not only in Nazi Germany, but also in other countries. At the end, approximately 10 million innocent people were slaughtered. Their sin? They didn’t fit the image of German’s perfect race.
This article hit it too close to home. Some of you may know Tomato Lichy, a well known U.K activist. I had the pleasure of corresponding with him several times during the heydays of the Gallaudet Protest. In this article Tomato shared his concerns about his partner possibly needing the services of I.V.F due to her age making it difficult to conceive naturally. They already bore a Deaf child. If they are able to get pregnant naturally, chances are high that the second child would be Deaf. Yet, if they seek IVF services just like any infertile couple, they are forced to have a hearing child against their will.
From the newspaper article:
“This Couple Want A Deaf Child. Should We Try To Stop Them?
“The trouble is that, according to clause 14/4/9 of the bill, the selection of a hearing child through IVF is permitted, but embryos found to have deafness genes will be automatically discarded. ‘This sends out a clear and direct message that the government thinks deaf people are better off not being born,’ says Steve Emery, a sign-language expert at Heriot-Watt University.” This couple want a deaf child. Should we try to stop them? | Science | The Observer”
I agree. There is no going around this. We are being devalued, unworthy to be humans simply because we are imperfect. We, the “disabled” are supposedly equal to our non-disabled peers, yet we do not have the right to exist. How does this feel, knowing that we are being deliberately eradicated?
Is it now permissible for other humans to play God and dictate to us what is acceptable and what is not acceptable? Where do we draw the line between acceptable and undesirables? This is an extremely dangerous slippery slope. History are doomed to be repeated if the lessons are not learned.
Addendum:
Transcript: The Right To be Deaf (BBC Radio Four)
TL – Again, we’re talking about different perspectives about what disability means. I don’t see myself as disability… er, as disabled. You’re not deaf, but you’re labelling me as disabled. I could say oh, well, black people are disabled. Deaf people have to struggle to achieve equal rights. And gay people could be regarded as being disabled. Let’s put them into hospitals and make sure that they’re cured; make sure they’re not born. But that’s not the case. We do accept that black people and gay people are equal. Why can’t you do the same with deaf people?
JH – But we do. I accept entirely that you are equal to me. But I would not presume, and I think many people who are listening to this programme would not presume to make a decision on behalf of somebody else. That’s the crucial aspect here, isn’t it? On behalf of somebody else – an unborn child – that they should have what I said was a disability, and I repeat that.
TL – But that seems to be somewhat contradictory, because you say that deaf people are equal, but then you say that it’s better not to be born deaf. That seems a contradictory statement. Really it’s up to us, as deaf people, to decide whether we’re disabled or not.
JH – Yes, it’s up to you to decide whether you’re disabled or not. It is not up to you to decide whether a child should be born disabled or not – that’s really my point.
TL – But it’s not just me, you know, it’s the British Deaf Association and it’s the World Federation of the Deaf. Organisations led by deaf people, they all agree that deafness is not a disability. http://stopeugenics.org/2008/03/10/transcript-the-right-to-be-deaf-bbc-radio-four/ Hat tip to Li-Li’s Mom .
E mail contact: mishkazena@aol.com
When this eugenics bill at UK was first brought to our attention, they were greeted with moral outrage and concerns by Deaf Community along with other disability groups. Still fresh in their minds were the the horrific American and Nazi Eugenics performed over half a century ago with the involuntary sterilization of the ’physically defective” and “morally unfit” people. These procedures led massive exterminations of people with mental illness and developmental delays performed at the beginning in Nazi Germany. The programs eventually expanded into systematic eradications of undesirable minorities, including races, religions, and sexual orientation, not only in Nazi Germany, but also in other countries. At the end, approximately 10 million innocent people were slaughtered. Their sin? They didn’t fit the image of German’s perfect race.
This article hit it too close to home. Some of you may know Tomato Lichy, a well known U.K activist. I had the pleasure of corresponding with him several times during the heydays of the Gallaudet Protest. In this article Tomato shared his concerns about his partner possibly needing the services of I.V.F due to her age making it difficult to conceive naturally. They already bore a Deaf child. If they are able to get pregnant naturally, chances are high that the second child would be Deaf. Yet, if they seek IVF services just like any infertile couple, they are forced to have a hearing child against their will.
From the newspaper article:
“This Couple Want A Deaf Child. Should We Try To Stop Them?
“The trouble is that, according to clause 14/4/9 of the bill, the selection of a hearing child through IVF is permitted, but embryos found to have deafness genes will be automatically discarded. ‘This sends out a clear and direct message that the government thinks deaf people are better off not being born,’ says Steve Emery, a sign-language expert at Heriot-Watt University.” This couple want a deaf child. Should we try to stop them? | Science | The Observer”
I agree. There is no going around this. We are being devalued, unworthy to be humans simply because we are imperfect. We, the “disabled” are supposedly equal to our non-disabled peers, yet we do not have the right to exist. How does this feel, knowing that we are being deliberately eradicated?
Is it now permissible for other humans to play God and dictate to us what is acceptable and what is not acceptable? Where do we draw the line between acceptable and undesirables? This is an extremely dangerous slippery slope. History are doomed to be repeated if the lessons are not learned.
Addendum:
Transcript: The Right To be Deaf (BBC Radio Four)
TL – Again, we’re talking about different perspectives about what disability means. I don’t see myself as disability… er, as disabled. You’re not deaf, but you’re labelling me as disabled. I could say oh, well, black people are disabled. Deaf people have to struggle to achieve equal rights. And gay people could be regarded as being disabled. Let’s put them into hospitals and make sure that they’re cured; make sure they’re not born. But that’s not the case. We do accept that black people and gay people are equal. Why can’t you do the same with deaf people?
JH – But we do. I accept entirely that you are equal to me. But I would not presume, and I think many people who are listening to this programme would not presume to make a decision on behalf of somebody else. That’s the crucial aspect here, isn’t it? On behalf of somebody else – an unborn child – that they should have what I said was a disability, and I repeat that.
TL – But that seems to be somewhat contradictory, because you say that deaf people are equal, but then you say that it’s better not to be born deaf. That seems a contradictory statement. Really it’s up to us, as deaf people, to decide whether we’re disabled or not.
JH – Yes, it’s up to you to decide whether you’re disabled or not. It is not up to you to decide whether a child should be born disabled or not – that’s really my point.
TL – But it’s not just me, you know, it’s the British Deaf Association and it’s the World Federation of the Deaf. Organisations led by deaf people, they all agree that deafness is not a disability. http://stopeugenics.org/2008/03/10/transcript-the-right-to-be-deaf-bbc-radio-four/ Hat tip to Li-Li’s Mom .
E mail contact: mishkazena@aol.com
March 10th, 2008 at 1:51 pm
I heard on the BBC’s discussion of this earlier today (which Jen Dodds has a transcript to: http://stopeugenics.org/2008/03/10/transcript-the-right-to-be-deaf-bbc-radio-four/ ) one of the strangest arguments FOR the screening of embryos for deafness (among other things) and the proposed ban on selecting a deaf child over a hearing child if multiple viable embryos exist.
The seemingly pro-bill commentator (John Humphrys) said: “It is not up to you to decide whether a child should be born disabled or not …”
The term ‘disabled’ aside, isn’t that exactly what the screening does? (Make that decision for the parents whether they agree to it or not)?
I think if we are headed into a time and place where we can pick and choose genetic characteristics — which is extremely frightening and loaded with ethical questions in itself — that authority to weigh what’s a positive and what’s a negative ought to be — IF IN ANYONE’S HANDS — up to the parents who will be raising that child and certainly not up to the judgment of our government. But really, if we’re looking at something such as deafness that is obviously controversial and is not universally considered to be ‘harmful’ to the child, I can’t see why the government is including it in this decision at all.
My child was taken from her birth parents as a direct result of governmental bureaucracy (one child law) because she was born female in a chillingly poor and remote region of China without medical care. If they had access to ultrasound technology, she likely wouldn’t have been born at all once her gender was determined. We tend to look at leaving newborn girls in baskets by train stations and outside office buildings as somewhat cruel and barbaric. How scary to think that if she was the product of IVF in some wealthy suburb of London with top of the line medical facilities, this brilliant, healthy, happy child might have never come into being at all.
March 10th, 2008 at 1:52 pm
Who wrote which paragraph? Names, please, so I
could cite properly for references.
March 10th, 2008 at 1:56 pm
Li-Li Mom, oh my god. This is way too close for you. Yes, I agree. China has a rather callous attitude toward newborns and perform compulsory abortions, no matter how advanced the fetus is. After all, they execute prisoners and use their organs for transplants without their permission. Thank goodness Li-Li- is alive and now has a good home in America where she is already treated well and loved very much.
Jean, I put quote marks on the newspaper article. It is located in the middle. Does that help? If not, can you tell me how I can make i clearer? Because I need to comment to the quote statement afterwards. Thanks
March 10th, 2008 at 2:32 pm
Oh the humanity with this “holier than thou” mindthink! Certain individuals today are not God! Disgusted.
March 10th, 2008 at 2:32 pm
I believe that the Deaf groups were the only disability group to raise ruckus over this… I am not aware of any others so please tell me what other disability groups.
Also, it’s pretty farfetched for you to link the Holocaust and involuntary sterliziation with genetic screening. Makes it hard for me to take you seriously!
March 10th, 2008 at 2:54 pm
Anon, please do feel free to google it if you doubt my words. By the way, that is the sentiments of many UK and USA disabled activitsts, too, not just the Deaf people.
Anytime one starts to attempt regulating the natural breeding of certain people, it is the start of a slippery slope.
When they started the involuntary insterilization practice in America, yes, the father of the eugenic programs, Hilter was impressed with the concept and the rest is history. It is well documented.
March 10th, 2008 at 3:01 pm
Curious what doing on DPN 20 was great events? Hope get on issuse topic later. Will you MZ post it?
March 10th, 2008 at 3:22 pm
What does the HOLOCAUST, the senseless murders of over 10,000,000 individuals, have to do with genetic screening?
For you to get sanctimonious here is ridiculous and farfetched. After all, we do genetic screening for various reasons nowadays and for you to tell me and the rest of us that they are all participating in Holocaust-like activities is pretty shameful. Call a spade a spade, but don’t go overboard with your hysterics.
Pretty well documented?
http://www.google.com/search?hl=en&q=genetic+screening+bill+united+kingdom+disabled+embyro+fertilisation
Can’t find much about other disability groups, other than Deaf people.
Please help me out.
March 10th, 2008 at 3:44 pm
From this article alone:
Human Fertilisation and Embryology…: 19 Nov 2007: House of Lords debates (TheyWorkForYou.com) http://www.theyworkforyou.com/lords/?id=2007-11-19b.704.4
“Muscular Dystrophy Campaign.”
“UNICEF ”
“been submerged beneath a huge pile of letters from many members of the public asking us not to legislate to allow hybrid embryos and, in some cases, comparing this scientific technique to Nazi Germany. As the child of a refugee from Nazi Germany and the relative of many others who perished, I find that comparison particularly odious. Be that as it may, I believe that it is right that we take this strongly expressed view very seriously even if it comes from an organised lobby, as the identical nature of the letters suggests that it does.”The Government’s own disability rights watchdog, the Disability Rights Commission, as it formerly was, is opposed to abortion on the grounds of disability. In 2001, the DRC stated that the section of the Abortion Act which permits abortion on the grounds of disability is, “offensive to many people; it reinforces negative stereotypes of disability and there is substantial support for the view that to permit terminations at any point during a pregnancy on the ground of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equally”.
The commission continued:
“In common with a wide range of disability and other organisations, the DRC believes the context in which parents choose whether to have a child should be one in which disability and non-disability are valued equally”.
The Disability Rights Commission has an official policy opposing abortion on the grounds of disability which it regards as the worst form of discrimination against disabled people. They are completely supported by the Royal Association for Disability and Rehabilitation which, as the leading network of disabled groups, takes an absolute stand against abortion on the grounds of disability.
One of the most difficult things for people with disability to contend with is the attitude of the able bodied, who obviously think it is better to be dead than disabled. Disabled people should be accommodated, treated where possible, and, above all, valued. It is clear that the current law and the provisions contained within this Bill do not value disabled people. It instead allows them to be got rid of, in the case of the 1967 Act, right up until birth. This is why in Committee, I intend to move amendments at least to stop abortion taking place on the grounds of rectifiable disability in the hope of wider debate about the routine use of eugenics. I hope your Lordships will consider supporting this in respect of equal opportunities to life.”
Keep in mind that these embryos are already created and alive. I’ll collect the other data.
March 10th, 2008 at 4:00 pm
Please support the demonstration march on April 12 for removing deaf genes from the Bill. Many deaf people are supporting us, please come and support!
March 10th, 2008 at 4:07 pm
Anon, stop being snotty and narrow-minded. You know what she’s implying. Ethnic cleansing or eradication? Their goal is the same with eugenics. Deaf people are not passive unlike other people you know. We are OK with our beings and have a right to exist on this planet like everyone else. Certain people do not have the right to dictate that reality, the friggin’ nerve!
March 10th, 2008 at 5:09 pm
“…principally driven by profit making motives and embodying eugenic ideologies,” NeMe: Stolen Rhetoric: The Appropriation of Choice by ART Industries by Faith Wilding http://neme.org/main/409/stolen-rhetoric
BBC News: Eugenics Outcry Over New DNA Test: “But a spokesman for the Society for the Unborn Child called the test “a fatal form of discrimination against the disabled”…… “It is being hailed as a breakthrough, but it is very retrograde. A lot of progress is being made against discrimination against the disabled. Paradoxically, medical science is becoming more firmly entrenching discrimination against them.” http://news.bbc.co.uk/1/hi/health/225156.stm
Why is Royal Society hosting pro-eugenics conference? Topics include Why we are morally obliged to genetically enhance our children, Preventing the existence of people with disabilities, Eugenics some lessons from the past http://www.gmwatch.org/archive2.asp?arcid=4465
“Recent rapid development in PGD indicate that we are stumbling down a slippery slope toward this future rendering a policy response an urgent matter….This policy failure must be corrected if we are to prevent a new eugenics in the US and aboard.” http://www.icta.org/doc/kimbrell%20testimony2.pdf
“Before a clinic can provide a patient with IVF, it is obliged first to consider the welfare of any children that may be born as a result. …… The provision enshrines a concept in law that was last popular in the heyday of eugenics: that the State has a right to decide who should and should not become parents. Civilised societies no longer forcibly sterilise the mentally ill or disabled, and constrain the reproductive rights of convicted criminals only for as long as they are locked up. We do not vet fertile men and women before allowing them to have sex, even when they have a history of violence or drug abuse. Expectant mothers are free to smoke and drink during pregnancy, regardless of the risk to the foetus. Yet as soon as people need medical help to conceive, an entirely different standard is applied. ” We should all boo that weaselly phrase ‘the welfare of the child’ | Mark Henderson - Times Online http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article700588.ece
Want more? I can get them easily
March 10th, 2008 at 9:59 pm
The supporters of the British act are woefully ignorant. It is not possible to identify every type of deaf gene in an embryo, so a great many will escape the process.
Also, selecting an embryo that is apparently free of defect is no guarantee that a yet undetected defect will not appear. Only a few dozen of thousands of known genetic problems can be diagnosed.
It is possible that a healthy deaf embryo could be discarded in favor of an unknown but fatally flawed hearing embryo which would cause immense heartache and expense when born.
The concept that it is morally wrong to interfere with natural selection needs to be drummed into those lawmakers’ heads.
March 11th, 2008 at 2:53 am
I guess if the hearing, non-disabled people keep oppressing the disabled, the world will soon be like what you see in the movie, “Gattica!”
If you have not seen it, rent it.
http://en.wikipedia.org/wiki/Gattaca
http://www.imdb.com/title/tt0119177/
March 11th, 2008 at 3:37 am
Opps, a typo! I meant to say “Gattaca” but the point remains the same.
March 11th, 2008 at 5:02 am
I support deaf and HI rights now, and do what I can when I can, I don’t however feel obliged to support the right to deaf children, or maintaining the ’supply’ of more deaf people, IF, a viable choice option exists.
I would be the same if they ID’d a gene that caused terminal illness, or a life of pain and suffering, and my ‘choice’ of child would be one that didn’t have those genes, it’s because I would want the child to have the best start in life, not because I think deaf people are a waste of space, or unworthy of life.
As deaf people few if any of us had any real choices as to how deaf we are or become, our parents didn’t. The natural selection point isn’t really valid either because deaf people too, take things to offset a disabled foetus too.
If choices are soon to exist, then we have to accept the fact, and appreciate whatever choices the parents then make. I think it is factual that deaf people carrying the deaf gene, producing deaf children, will not be sufficient, to save deaf culture, because there are so few of them. (I think around 2% ?).
Obviously this is all based on the point IF a real choice is given. In that respect I think few hearing parents would go for a deaf or a disabled child, they don’t need a ban by the state, just the choice. Are we to oppose that choice ? what right do we have ?
Once again emotion has taken the question away from the uncomfortable reality we could choose no to a deaf child too…. It would be a choice certainly with those who have had bad experience being deaf, and for those who were never within the ‘Deaf’ community in the first place..
March 11th, 2008 at 11:56 am
MM, since you are not Culturally Deaf, it’s understandable that you don’t share the same views. However, the Culturally Deaf, especially those from Deaf families see deafness deeply integrated in their lives and community. I was referring to those people and yes, they do have the right to propagate their people, just like Hearing people, do, African Americans, and Native Indians. We’ve seen the problems of these minorities being integrated completely to the mainstream, only due the prejudices and stereotypes of the Dominant majority, yet we don’t see any active eradications of these minority. Yet disabled groups are deemed valuable contributors to the society.
One thing many people fail to understand is that Culturally Deaf people are so adaptive with a language and culture that they do not feel handicapped at all. Their deafness isn’t a life-threatening condition. Yet their viable embryos are not permitted to survive at all. In this bill, these embryos are deliberately identified and removed, even though the Deaf couple may not ask them to run DNA tests. The Deaf couple may not want to make any choice in selecting any embryo, yet the state is running active interference
March 11th, 2008 at 4:44 pm
[…] Eugenics Too Close To Home: Tomato Lichy, U.K. Activist […]
March 11th, 2008 at 4:48 pm
[…] 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 […]
March 12th, 2008 at 1:31 pm
Your topic shows “Livy” as Tomato’s surname.
There was a Tomato Lichy who used to email me in the past. Two different men?
March 12th, 2008 at 1:36 pm
The topic should shows Lichy, not Livy.
It is the same person. It is very different when we know that person, doesn’t it? : /
April 15th, 2008 at 4:36 am
Interesting. Have linked to your post. Just how many deaf couples are involved in IVF?
September 26th, 2008 at 2:59 pm
“there but for the grace of God, go I”