Telegraph on ‘deaf babies’ we are still failing to get the message across

This report appeared in the Daily Telegraph today.

It is a positive report in so many ways, as it demonstrates what we already know: pressure from activists (you see, pressure politics DOES work!!) has actually forced the Department of Health into a climbdown (though whether it will find its way to Parliament is a different matter).

I have met the two health officials involved in rewriting the explanatory notes, and they were genuinely concerned at the feeling amongst Deaf people on this clause, and relating it to deafness. They were open and willing to learn, and I think they deserve credit for being open to the case we at Stop Eugenics have been putting to them.

But the Telegraph heading is actually quite a disappointment as far as I am concerned. We are not out to create deaf babies, how many times do we have to make this clear before the message gets through? Maybe it probably never will, but it does show that, in spite of what the media write, it is still possible to influence change in spite of all the forces that seem to be ranged against you.

It does not stop here, however. It is only the explanatory note that refers to deafness that is subject to a suggested amendement; it won’t stop the clause proper.

There is still work to be done, particularly because Baroness Deech made that statement in the Lords that the clause 14/4/9 applies to deaf people. And the clause tries to legalise something that the state is best kept out of anyway cos there are far too many scenarios, possibilities, issues, that can’t be legislated for and are best made privately.

The wise young guy and the zombies

Its been one crazy week, with the media having gone barmy for the Deaf genetics story; it has probably been covered by nearly all newspapers, and loads more radio stations. Give it a few more days and the entire UK radio network will be complete! Oh, the irony, radio, the most inaccessible media of the lot! (All articles relating to the genetics story can now be found on http://stopeugenics.org)

Have nothing but complete admiration for Tomato Lichy and Paula Garfield (not forgetting Molly’s stunning appearance on Breakfast News!); you gotta hand it to those guys, being prepared to have their personal story conveyed into homes up and down the country, scaring some but winning support from many more and forcing people from all sides of the political spectrum to come off the fence.  Sadly, it seems most just.don’t.get.it. 

However, a friend texted me late last night to tell me that on the Politics Show, Michael Portillo and Robert Winston were discussing the HFE Bill, and here is what he told me, saying the “Bill and deaf people [are seen] as the real moral dilemma – the complexity obviously really struck him [Portillo]“. I can’t believe I’m sat here thinking that an arch right winger like Portillo wins my respect for at least been thinking about this with a bit of sense, compared with a once fervent socialist like David Blunkett, who is, unfortunately, more typical of the media reaction. I quote Portillo from the radio transcript: “It makes one wonder if the law is necessary at all,” before Professor Pembury suggests it is the clause (the now infamous 14/4/9) that isn’t necessary, not the Bill itself.

With all the media reporting, I was taken back to thinking when we first began the StopEugenics campaign; we worked hard at getting a press release together, making contact with Lords and MP’s, getting everything up in BSL, people chipping in with amazing graphics and that stunning ‘STOP’ video. True, it seemed to have worn a lot of us down, especially cos it happened before Xmas, plus we had to try and make sense of the Bill, the clause, the issues, etc etc.

We did get some response from MP’s, the dire Sunday Times article, and a few smatterings of publicity and things happening; but it has really been the story of Tomato and Paula in The Observer, and the radio interviews that have followed, that’s taken it all to a hyper-level.

That is always how it was probably going to break through though. Right?

Now, there is a dilemma, cos the story has hit the news, but it has also been completely twisted. Is it wise to push this story? The truth is, that ever since StopEugenics started up, there has been a request, by various news outlets, put out to try and find a Deaf couple who are going through or have been through IVF. Since none could be found, there has been a silence.

Now a couple have been found, who reflect intelligently on the legislation, because from their perspective, you can see where their desire for a deaf baby arises from, but the resultant risk is that it will bring a reaction from those who consider deafness as something to be avoided at all costs, as if a drop of it will set off some kind of monsters of a bad dream. The alternative is to shut up and stay silent in the hope that we can quietly convince MP’s and those with power, that we have a just cause (perhaps even waiting to try and get the whole media onside before going ahead with the story).

But the media has always worked to its own logic when it follows news stories; the way they are covering Deaf issues is not unique. It is an uphill battle to get the media to focus on the issues as those involved in campaigns see them, it being often not so much on what is reported as what is not reported (cos those in charge of the media either don’t think it will make a good news story or it offends capitalist sensibilities and profits).

Most of the news has not been sympathetic and stuck on the broken record of Deaf people wanting to create a deaf baby (never mind the fact, as Tomato has pointed out, that the embryo is already deaf, it’s not a question of it being ‘created’ but chosen).

Now, I have never been comfortable with the question of ‘choice’ in this issue: better to leave things alone, cos really, there is nothing wrong with being deaf. But if the choice of a hearing embryo is going to be allowed, then so, too, should a deaf embryo: and this is where people get horrified, because they consider deafness to be something to be avoided, a disability, or an illness. Our society is not yet ready to think differently about deafness, but one day it definitely will be, and what we see here in our lifetimes is an embryo (no pun!) of the new thinking emerging around Deaf people that will be accepted discourse in future years to come.

Amidst all the scratchy media writing (my worst offender award goes to the Daily Mail, yes, imho beats even Blunkett!), however, some very inspiring stories and comments indeed are filtering through. The first I’ll mention, a 13 year old guy who, having listened to BBC Radio 4’s Moral Maze, the radio programme that I took part in, said to his father:

“It is easy: should be no choosing allowed pre-birth and all medical and social efforts and money put into resonding as fully as possible to whatever arises from birth onwards.”

Wise words indeed!

The article by Dominic Lawson is the very best journalism we’re likely to see. And what a fab write up by the Coterie of Zombies, that really cheered me up; the person who wrote that makes a great analogy, of Deaf being dressed up as baddie ‘terrorists’; and that, to me, is extremely apt. The media creates far bigger monsters than are really evident. You see, there are a lot of people out there who really do understand, from young people to zombies.

And that gives me hope.

Tiger

Eugenics in UK: the debate suddenly takes off and hots up!

Suddenly there’s a lot of news coverage over here in UK on issues relating to Deaf issues.

It began with this report in the Sunday’s (9/3/08) Observer, which had a general news focus on the HFE Bill. The article was centred on Tomato Lichy and Paula Garfield; in the printed version it shows a photograph of them and their daughter Molly. There is a link to the story on the front page of the Observer.

(Just for the record it is the Observer who refer to me as ‘an expert in sign language’; that’s the press for you!)

The debate really fired off today though, since following the article, Tomato and Paula were interviewed firstly at 7am in the morning by John Humphries on the Today programme; and then secondly by Jeremy Vine at lunch time.

For non UK viewers, these two interviewers are serious heavyweights for the BBC, and the Today programme in particular is listened to by a large number of people, so this is big time stuff.

Click on this link to see a transcript of the Today interview, kindly produced by TeamHaddo. And click here for the transcript of the interview with Jeremy Vine, again transcribed by TeamHaddo. (Isn’t it telling that the huge corporation that is the BBC with all it’s millions can’t produce immediate access to it’s Deaf licence payers to enable Deaf citizens to engage in the debate this has sparked off.)

BBC Health have carried a news item about the subject and it’s being debated on message boards already, particularly Women’s Hour at the BBC.

Apparently it will also be featured in the Daily Mail tomorrow (Tuesday). Again for non-UK viewers, the Mail is a newspaper that’s a cross between a broadsheet like The Observer or The Guardian, and a tabloid such as The Sun or the Daily Mirror; but the Daily Mail is openly to the right of the political spectrum and therefore I would expect less than favourable coverage.

So far…

Just reading through the debates and my view is that they are going right off the radar, but predictably.

Key thing: what’s being missed (apart from in the Observer):

1. HFE bill is why the issues have come up in the first place

2. Clause 14/4/9 means hearing embryos MUST be selected: its a reaction against that clause….

3. Complex testing process gives couples the right to create HEARING babies, but no deaf/disabled would be able to be chosen by IVF

4. Where is the debate about whether it is right and just for people to use genetic technology to create a HEARING baby – obssessive focus on tiny minority of deaf creating deaf babies;

But there are several places where there is potential breakthrough: many people are saying the technology should just be left alone and come along what may (so why discriminate in the first place, and actually this bill does discriminate, it favours hearing embryos and forces that selection)

And in the BBC health article at the end of the report Julian Savulescu, director of the Oxford Centre for Applied Ethics, makes the point that the numbers who will use this will be tiny (one in ten years) and they can therefore afford to be liberal about allowing a Deaf couple to select for deafness.

My reply to a request from the Observer…

Last week Robin McKie of the Sunday Observer sent me a list of questions, the answers that I gave are below. It’s a bit long I’m afraid, and they used just one sentence from it:

To answer the questions…

- What do deaf people think about the bill?

Clause 14/4/9 of the bill will allow the selection of a hearing child through IVF. That is what the clause is really about. A couple going for IVF will be able to test whether any embryo’s they create have a deaf gene. If they are found to have the deaf gene from the test, these embryos WILL AUTOMATICALLY be discarded. The very fact of this possibility affects the citizenship of living Deaf citizens. It sends out a clear and direct message that the government thinks Deaf people are better off not being born.

There are varying opinions about the whole HFEB bill. But there is a lot of unified anger and revulsion about clause 14/4/9 of the bill. Not just from UK but from the Deaf community worldwide. Nearly 200 (Deaf and hearing) people have signed their name to the Open Letter on the stopeugenics website. Several people have written to their MP’s, and there is even the possibility there will be a march against the clause. You only have to go on to the www.stopeugenics.org website to get an idea of the anger.

Why are Deaf people being singled out for attention by politicians and government departments in this clause? You have to understand the anger in the context of history. Deaf people are all too conscious of history’s attempts to ‘normalise’ them, seek cures for deafness, or even to eradicate it altogether. Indeed Deaf people have experienced the normalisation process first hand. Precisely because genetics offers the potential to remove deafness from a gene, or to identify it to stop a deaf child from being born, there are real fears that those who want to eliminate deafness from society will seek to do so via genetics. Therefore to see this clause being introduced and misinformed statements being made by politicians and government departments, those fears are raised.

- are there individual deaf couples who are seeking to have only deaf children and would therefore be victimised against the bill?

It’s important to understand the difference between the desire for a deaf baby and the actual genetic selection of one: this is getting mixed up in the debate. 90% of deaf children are born to hearing parents, and 90% of Deaf parents have hearing children. This means only between 5 to 10 percent of deaf children are born to deaf parents. It is a small minority; therefore a deaf child born to a Deaf couple is an unique event. It is a cause for celebration, and not despair.

It is a different matter altogether if a Deaf couple deliberately seek to have a deaf child. Most children born to Deaf couples are hearing children, and are loved and cherished just as much by their Deaf parents (just as if, for example, a couple might have a strong desire to have a baby boy, but love their baby if it is born a girl). The numbers of parents who actively seek to have a deaf child is unknown, but we know from research that this is very tiny; probably less than 3%, if that. And yet the way politicians, government departments and the media report on it, you would be forgiven for thinking it was 100%.

Deaf people simply understand the reasons why a Deaf couple might select a deaf child, and will reject any attempts to ban them from doing so. It’s important to understand that the campaign has not been set up to support demands for a deaf baby – such a demand has never existed!! – but to reject attempts to ban them from doing so. This might sound like the same thing but is very different. No legislation demanding the right to a deaf child has ever been thought up by deaf people; legislation is, however, being promoted that will enable a couple to select a hearing baby and stopeugenics is reacting to that.

- What sort of legislation should we have?

My personal belief is that shared by the UK Disabled People’s Council (UKDPC) which does not oppose any medical research that is for the alleviation of pain or treatment of illness (of which deafness is NOT one!):

http://www.bcodp.org.uk/about/genetics.shtml

However, Deaf people have their own language and culture and have for many years now been demanding recognition of this status; implementing the kind legislation that recognises this status would go a long way since it would have a knock on effect of how society views its Deaf citizens.

The government has already recognised British Sign Language as a language in its own right. That needs to be strengthened and a BSL Act introduced, which would be similar to the Welsh Language Act. It means recognising and accepting that Deaf people are a linguistic minority group, with their own language and culture. Once that becomes recognised, any genetic interference with deaf genes is actually an interference with a language minority group. Imagine any genetic intervention to make everyone speak English! It would cause a lot of uproar, and rightly so.

There is nothing wrong with being Deaf, just like there is nothing inferior about sign language; being deaf is not an illness or a life-threatening disease. Deaf people have been part of human society since its inception, and have had varying degrees of social status in that time. In modern society, linguists accept that sign language is a visual-gestural language. A BSL Act would be a first step to changing societies attitudes and offering Deaf people linguistic recognition, protection and respect, not to mention development.

TigerDeafie

Genetics and the mitochondria 3-parent news story

Taking a break from research in the national library in Edinburgh, I was reading a copy of the Scottish Daily Mail (as you do) over a cappuccino in a nearby café. (Please note, I do not *buy* the Mail, it was already in the café.) Skimming the pages and looking for interesting headlines, I came across a story that has also been featured in at least three other sources (Guardian, Evening Standard and BBC News online). It refers to the creation of a human embryo free from diseases of the mitochondria. These embryo’s can be created and placed in women at IVF stage. For an outline of how the story has been covered, see this link BBC News. A paragraph in the Mail, however, stood out:

“An update of the fertility laws which is now before Parliament also bans [damaged/diseased] embryos from being used in IVF treatment. However, the ban could still be lifted before the Bill becomes law.”

Once again in news reporting deafness is mentioned as one of those ‘diseases’ (though not in the Mail article). My immediate reaction to this news was a further belief in the vindication of the StopEugenics campaign, but via email correspondence with an informed researcher I have learnt that with this particular issue it is not so simple. The mitochondria is a ‘mini-organelle’ found within individual cells; the function of the mitochondria is to generate energy, and when they are faulty they can lead to, for example, liver failure, stroke episodes, muscular dystrophy. It can bring about multiple diseases in the person, and so deafness is likely to come along with these. Deafness can’t (yet) be isolated within mitochondria. Therefore the creation of ‘disease-free mitochondria embryo’s’ is being done to try and stop ALL traits developing; it can’t be engineered to only stop some and not others. There is no way of knowing how it will develop in each individual, although it can develop as early as childhood.

Before continuing I do understand that when a person is affected by multiple diseases due to faulty mitochondria it can be quite distressing for carers and those who live with with the person who suffers, not to mention the effect on the person; I do not want to downplay that. My attention is drawn to it due to the links with the StopEugenics campaign. What is interesting is the fact that the Mail are reporting that a ban on using these embryo’s might *not* go ahead: that seems to be a direct reference to Clause 14/4/9, and if so, it’s the first I have seen the media report in this way (though perhaps they are also taking into account the general opposition to the Bill from the ‘right-to-life’ lobby).

This news story reminds me of a couple of things. Firstly, that the media and politicians continue to refer to deafness as if it is a serious or life-threatening disease when it is anything but. Such use of the example of deafness may appear subtle to the unobservant reader, but it nevertheless assumes deafness is something to be ‘cured’ or ‘rectified’. Secondly, and as we have found in the StopEugenics campaign, this really is a very complex issue that the Bill is trying to push through to make law. It reminds me of the need for clear background information on all aspects of genetic research, but that is not always forthcoming or obvious.

On a different note, a detailed and informative journal article on the HFEB Bill, this time in BioNews: http://www.bionews.org.uk/commentary.lasso?storyid=3721

 

 

Genetics HFEB – links to articles in t.v., media, online, etc.

Here are some further links on HFEB Bill you might like to see:
http://breeze01.uclan.ac.uk/eugenics/ ‘See Hear’ on the Bill, for our international friends! with big big thanks to Clark

http://www.bionews.org.uk/commentary.lasso?storyid=3697 Supportive article written by Heather Bradshaw, who is based at University of Bristol; thanks to Anna for bringing to my attention.

http://www.gsdnet.org.uk/content/events/ The ‘Group for Solicitors with Disabilities’ have highlighted the StopEugenics campaign here; thanks to Alison for the link.

There are at least three more related that I know of to follow, and one other TV production will cover the issue, all links will be posted here

Cathy Heffernan on the advantages of being a Deaf traveller :-)

There is this brilliant article in the Guardian today by Cathy Heffernan entitled Being deaf has one big advantage when you’re travelling abroad – it breaks down all the barriers. Her experience certainly mirrors mine re: travelling to places like South America and the Far East.

Go read!