Not quite with the Times …

By Dr. Steve Emery | December 22nd, 2007 | Posted in Media Campaign |

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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.