…and so the genetics bandwagon looks like rolling into the Netherlands [and the 'designer baby' created free from hereditary cancer!]

Genetics ‘stuff’ might have died somewhat with the virtual unopposed passage of Clause 14/4/9 of the HFE Bill through UK Parliament and burn out on the part of those of us who have spent so much time and emotional energy trying to bring to public awareness the consequences of the Bill. But it looks like rearing its ugly head in the Netherlands; Stop Eugenics always warned that what becomes law in UK tends to be copied elsewhere, but I’m sure none of us will take any pleasure if those words are vindicated.

We could really have done without UK’s See Hear smashing and thrashing a lot of big thick nails into the coffin of what has been such a heartening and soul-fulfilling International campaign of which there is much to be inspired by; more on that later.

The HFE Bill is something that certainly should be treated seriously. I’m writing under the assumption that it appears as if 14/4/9 is about to pass through Parliament and become law, and unless there is some dramatic intervention, here is what it will mean.

As is well known most deaf babies are born to hearing parents. Deafness, rightly or wrongly, is still looked upon as something of a deficit in our society, the loss of a sense, a disability that a child should be prevented from having if at all possible, and in that context the vast majority of parents tend to feel grieved when they learn their child is deaf.

We also know that 50% of deafness is genetic, and therefore unknown. There is not a lot that can be done about that and therefore deaf babies are still going to be born (unless, of course, Tom Cruise comes to the rescue in a Minority Report kind of society where balls roll down a chute to warn the medical-police of a deaf baby potential so in swarm the cops to pry apart the couple from the act of copulation).

The hearing parent may want to know why their child was born deaf. If they are thinking of having another child, they may want to know the chances or possibilities of their future baby being born deaf. In the past such questions would be left to speculation, unpreventable, chance, wait and see, etc.

Genetic counselling, however, offers couples the opportunity to go for a chat and explore their questions and concerns. What is more; we will now have a situation where it is legally possible to create a ‘designer hearing baby’.

Ok, it isn’t a simple or cheap solution right now; the couple will have to go through the process of IVF, because that will enable embryo’s to be removed from the womb; and they will then be able to go through a process known as Pre-Implantation Genetic Diagnosis (PGD), which will enable a test to be undertaken to identify if an embryo is likely to be born deaf or hearing.

Currently it will only appeal to those rich enough to afford it, because this is expensive (they pay for IVF and also for PGD).

Sure, only the connexin 26 gene can be identified from this test, but it is would not surprise me if the test was expanded in future to identify the hundreds of other genes for deafness that are known (300 at the last count).

A couple may legally undergo PGD screening to see if they can identify the deaf/hearing status of the embryo. If it is found that there is a mix of deaf and hearing embryo’s, the next step is very simple. The hearing embryo(s) are the only ones that can legally be implanted [because deaf genes are highly likely to be regarded as 'abnormal' under the terms of the clause], and so therefore the female will have the hearing embryo put inside her and with it comes a high chance/near certainty that their child will be born hearing.

Of course, there is no guarantee: it could well be that all embryos are found to be deaf. Then the couple will have the choice of deciding whether it is better off having a deaf child or no child at all.

But when the first ‘hearing’ child is born from IVF via PGD I’ll hazard a guess the chances are high that this will hit the news, presenting an overjoyed couple with a hearing baby. Other couples in a similar situation may then want to look at the possibility of the same kind of service for themselves, encouraged no doubt by genetics industry spokespeople who consider deafness as an illness, a disease to be eliminated and eradicated, and a drain on taxpayers money. I can just picture them now, in their white coats, speaking calmly about the miracle of genetic technology, the joy it brings to parents, the lack of resources to make this more widely available, the high expense that prevents people affording it, and presenting themselves as entirely impartial service providers with no vested political interest.

And of course we will have the ‘baddies’ too: those ‘moronic’ and ‘sick’ Deaf people who see nothing wrong with being Deaf, taking great pride in language and culture, and who see the technology as yet another means of reducing if not eradicating Deaf people from society altogether. The media story will begin by highlighting a ‘frenzied’ group of Deaf people wanting to force hearing parents to have deaf babies, to deny them the choice of PGD; and in the process the media will whip up yet another anti-Deaf hysteria field day.

We have already seen a dry run of that in the press with the furore over the HFE Bill, which See Hear, to its shame, has tried to minimise with a narrative that treats the whole things as a silly little fuss over nothing.*[See End Note]

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I was fascinated to read how the press has treated the story of the yet to be born baby that has been through IVF and PGD to ensure he/she will be born without carrying hereditary breast cancer. A couple had decided to undergo this process due to the high incidence of cancer in their family. The thisislondon report was typical of many I read, headlining the process as the creation of a ‘designer baby’; I am fascinated by the media depiction since one might assume the elimination (or at least the reduction of) the potential for a baby to develop cancer as an adult would be hailed as universally positive: and yet here they are calling the process the creation of a ‘designer baby’.

Yet there was hardly any mention in the media that the screening out of deafness, which the media widely regard as being a bad thing, would equate to the creation of a ‘designer hearing baby’.

Interestingly, the reports highlight something else that is quite crucial: this screening process does not guarantee the baby will not develop cancer; it reduces the risk (albeit considerably they report).

I don’t personally think that particular practice is necessarily a bad thing to do, to harness and use genetic technology for screening out something like cancer. Nobody that I know of celebrates breast cancer; in Edinburgh they have an annual ‘through the night’ walk to raise money to go into research to seek cures for such cancer (called the MoonWalk) but with the Deaf community we have a group that celebrates sign language and Deaf culture.

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If our energy is waning and the baton looks like being passed on elsewhere, I wanted to take this opportunity to celebrate the positives from what’s come out of the opposition to Clause 14/4/9: Stop Eugenics may not achieve its aim of getting the Clause scrapped, but it did give the world a glimpse of what’s possible. Via cyberspace, a true campaigning network force was created (which incidentally I read elsewhere is becoming quite a common means of organising protest in the 21st century). The established charitable organisations were largely on the fringe (though the National Deaf Children’s Society did early on release a statement opposing the Clause); links were made with International organisations that represent the interests of Sign Language People (such as the World Federation of the Deaf); the odd media article was truly insightful, the blogosphere rocked with some stunning pieces of writing, while many within the genetic and medical community recognised the injustices of the clause and said it could easily be scrapped; the radio proved probably the most surprising outlet of them all for dissemination of the view of those opposed to this Clause. The British Deaf Association delved in early on, quickly recognising the implications of the Bill. There was a march organised by people unconnected to Stop Eugenics, which was made up largely of young Deaf people. Disability organisations and writers even got involved adding their words and voices in opposition; there have been many positives too long to mention: the setting up and maintaining of the website; creative posters and pictures opposing the Clause; that incredibly powerful ‘Stop’ video; translation of all kinds of material into BSL (done entirely voluntarily); transcripts of radio interviews into English by the superb Team HaDo (again largely voluntary); Tomato and Paula’s hectic international interviewing schedule; meetings with the Department of Health and at Wales Gene Park, and so on.

This was all achieved in the space of less than 6 months, when fully-paid up politicians, government departments, civil servants, and all kinds of other organisations, have had years to prepare their arguments.

If there are any group of people or scientists who are working on something for which others hold a totally opposite view, consultation and open discussion and debate is essential before any kind of policy making is made for legal consideration; but in this case that has not happened…Oh, I forgot, the UK government does actually legally require a consultation process with affected parties to take place…only it appears to have been brushed aside in this case.

This is far from the end; it feels to me just as if the ignition has been turned on to fire up and start a brand new car.

—–

[* Note: As a comparative example, look at all the mighty fuss kicked up in the UK over the 42 day terrorism detention extension…critics are universally agreed that hardly anybody will be locked up for so long (though legally they can be), but they also know that is far from the point, it’s arguably a blatant attack on civil liberties generally. Bit by bit those days have extended by the UK government over the last few years…there is a mighty argument about it, some are solid in their support, others solidly against and a lot of people in the middle. It comes on top of the growing number of CCTV cameras, surveillance in general, increasing, more police powers to stop and search people on the streets they suspect of possession of weapons, substances, or whatever, possibility of ID cards on the way, etc. That doesn’t make people stupid because they have different views on these issues, or sometimes are not always entirely clear of the arguments; but they do have some sense of feeling threatened by these laws and articulate that in different ways.]

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.

That Inspiring Debate on Genetics in UK on 9th April…with a caveat

This post is coming somewhat a few days after the event of 9^th April, but better late than never I hope!

I have taken a jolt from the events surrounding the fact that one person at the event was attacked by a couple of others (more on that later): that is not a nice feeling when it happens to a friend, but I tried to support the person as much as was possible, while also having to grapple with the nerves of having to take part in the debate, and I had also had intense (but useful) genetics meetings earlier on Wednesday and also on Thursday.

It risks taking the focus away from what was, for me, one of the best events I have seen that involves Deaf people concerning a political issue for years. So while I do not in any way want to belittle, undermine, or ignore what happened with the attack, I do want to try and firstly write something of the spirit I felt being there.

I can’t remember the last time being part of an atmosphere such as was the case on Wednesday: utterly electrifying, and probably not felt since the march/event meetings on BSL recognition. In many ways I felt a lot more could be taken from this occasion, simply on the basis of who was present at the debate, the atmosphere created, and just the sense that everybody present had so much to contribute.

The incredible thing of all were the mix: medical people, geneticists, and department of heath officials, genetics interests groups, mixing with local Deaf people, Deaf academics, and representatives from Deaf organisations, including the campaign group Stop Eugenics and the BDA.

The way the seating was arranged (it is hard for me to explain this) meant that people felt so close to you when you stood up to speak/sign; it wasn’t like a flat classroom or a huge lecture type all. It was really a dynamic setting.

This also wasn’t one of those conferences that you pay ridiculously huge amounts of money to attend and so in the process exclude those on lower wages and are more likely to get a balance of professional heavies who can afford to go because their work pays for it. That was, of course, thanks to the Progress Educational Trust, who made no charges, and who, incidentally, appear to favour dropping/amending the clause. But the thing is, ‘professional’ (Deaf and hearing) people turned up anyway, out of genuine interest, and not cos their job demanded it.

Neither was it a show for men/women in suits telling you how it is and then giving the ‘proles’ from the audience a chance to have their say: in fact after the three speakers had given their 10 mins view, and apart from having had one or two times each to respond, this was an occasion for as many people to come forward and have an opportunity to put their point of view: professors, government reps, Stop Eugenics activists, BDA (National and Wales), IDC, NDCS, and so on. The event did not end with any so-called experts telling you what the answers were, because the truth is there aren’t any simple ones (other than, of course, dropping the clause!).

And the guy who was the speaker at the debate other than myself and Anna Middleton; Colin Gavaghan; I am linking to his website: go see what this guy has to say; he has written on this issue and there is a link on the right hand column of his page: I may not agree with all his finer points, but his approach towards the issue is very refreshing and if you are an activist I’d count him amongst your allies.

Everyone I spoke to after the event had nothing but positive things to say about the event and what was said/signed; other than the attack on the friend, the vibes were buzzing, people wanted more such debates, they wanted to know ‘what next’.

The event was ticket (free) only because they can only cram 100 people into this hall (and when I agreed to be a speaker I wouldn’t have thought we’d get more than 40 or so, cynical me); it was sold out and there was a long waiting list, plus I understand some people who had driven all the way from Bristol had to be turned away due to the event having started and being packed out completely.

Where-ever else do we see this happening? It proves very clearly without doubt that Deaf people ARE political people; this specific IVF issue will hardly affect anybody, but the interest does not come as a surprise because it will affect ‘the Deaf community’. Just in the same way that issues regarding education do, this is another that Deaf people involve themselves deeply in, because they know what it can lead to.

It was with great sadness that my friend was attacked; this spoilt the event in a big way, however, my friend showed great bravery and dignity to stand up to this attack, ignore the demands of one other, to come into the meeting, sit through it, join us all afterwards for drinks and chats, and then pen a fantastic summary of the event itself. And she has continued to engage with the issues ever since: I, in contrast, have found it hard to deal with, needing to take a few days ‘off scene’.

My hope is that people will not allow that event to overshadow what was, in effect, a very interesting debate. I hope that people will take inspiration from it.

Our international allies will surely be assured that we UK activists are fighting this every inch of the way!

‘Isn’t that all a bit Adolf Hitler?’ the taxi driver said.

Text message from a friend today:

“Today my taxi driver asked me about my work, so I told him about the Bill, and his immediate response was, without me declaring my position on it all was ‘Isn’t that all a bit Adolf Hitler?’ and we went on from there.  If it is so obvious to ‘the man [sic] in the street’, what is the problem with our elected representatives? Maybe we could do more somehow to stir up the general population to support us. Sigh.”

And that is in addition to the ‘lass’ he’d spoken to about it only the day before, a waitress, who was so horrified she started off discussing it with her working colleagues…who also agree the clause was out of order.

Tiger

Five years after BSL is acknowledged: was it worth it?

Today is five years to the day that BSL was finally acknowledged (although it’s down as being ‘recognised’ in the official statement I don’t buy it) by the UK governement. 

Let me be clear.  Deaf people should celebrate because it wouldn’t have happened without the action of people up and down the country: the marches, the demos, the direct action especially.  Without that we’d have nothing to refer to, nothing to show for it. But sometimes I wonder if it would have been better to have publicly rejected the statement, and fought on, since let’s face it, it’s hardly done much to change anything?  Plus we were still quite fired up into taking action, and this statement seems to have killed that off. 

The other thing is, that the very next day this statement was announced, the UK joined the USA in it’s illegal invasion of Iraq.  I recall watching the nightly news bulletins of ’shock and awe’ bombs raining down on the beautiful and historical city of Baghdad. In that context it was very hard to celebrate the statement effectively, knowing people were being mercilessly killed in Iraq.

However, people did begin a mass movement to oppose the war and I attended demo’s in the UK calling to ‘Stop the War’; if we had rejected the statement we could have continued with the demoing, but it’s too late to reflect on ‘what if’s…’ now.  Hopefully this will be a learning process; I certainly learnt a lot from it.

And here we are, five years on, yet another meeting has recently been held with government and organisations, which incidentally we still don’t know anything about, what happened at this meeting of the suits and our PM Gordon Brown??  All I have seen is the photograph of those who attended the meeting, and a brief outline of what was agreed.  And also this is all taking place in the context of the HFE Bill, clause 14/4/9.

Is this the setting for a BSL Act finally being seriously considered?  It would not be perfect, but would nevertheless be a step in the right direction.  And if that does come to fruition, all fine and well, but I still feel that at some stage, the marching boots will be out again!

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 (9/3/0 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

To march or not to march (against Eugenics)…is that the question?

For some time now it has been known that Islington Deaf Campaign (IDC) are organising a march through the centre of London ‘to stop remove deaf gene’. From their website it is clear that their campaign has arisen as a result of the HFEB bill.

They are to be congratulated on that.  A march will put further pressure on MPs and the government to drop or amend the clause. A march will receive media attention linking the government with Eugenics and that is something they will not want. It has also become particularly urgent in light of the fact that the Lords have completely ignored the StopEugenics campaign, and therefore the HFEB Bill and the clause is now set to be processed through Parliament…unless it can be stopped.

However, there is some confusion with the aims of the march: are IDC organising against the entire Bill or just the clause?

StopEugenics has sought clarification on this but are still awaiting a reply. StopEugenics was not set up to oppose the entire Bill, only the clause (see here for some of the reasons why the whole Bill is not being opposed). Individuals might be against the Bill in principle and that is up to the individual if they want to oppose the whole thing, but not necessarily everyone in StopEugenics does so, and therefore StopEugenics is not in a position to support a march which opposes the entire Bill.

But there is a more fundamental problem. Nowhere in the Bill is there anything that will lead to the compulsory removal of the deaf gene. It is clause 14/4/9 that is the problem. If it becomes law it will mean a form of eugenics where parents can choose hearing genes over deaf ones, BUT only during the IVF process and then only if they decide to have the test for the deaf gene. If the clause is removed, however, it removes allowing parents the (eugenics) opportunity to create a hearing baby.

IF the march, however, is being planned as a general, broader attempt to ’stop remove the deaf gene’, of which the clause in the HFEB Bill is just one example, then that would be a different matter and would undoubtedly be supported by a lot of those involved in the StopEugenics campaign.  There does, however, need to be some clarity of the various ways in which the deaf gene is under threat other than from this clause; otherwise I am left wondering for what reason the march is taking place other than it being linked specifically to the HFEB Bill.

Two other projects to mention…and an update on the genetics research project

In addition to research on attitudes to genetics there are two other projects currently being worked on at Heriot Watt.

The first is subtitling; there has been very little done into how deaf and hard of hearing people read subtitles, what they think of it, and what styles and types they prefer.  A guy at Heriot-Watt, Pablo Romero, is doing his PhD on this subject; they are collecting views of Deaf and hard of hearing people in three different European countries, and I’m working with him advising and assisting with setting up groups etc.  It is hoped that the findings of the project will help in the running of courses for translators who want to work in subtitling, so it does have a practical application.

The second is research on the mental health needs of Deaf Black and Minority Ethnic (BME) people in Glasgow.  This is a pilot research project spread over 5 months and involves me working with the Deaf BME Officer in the Glasgow Deaf community to evidence whether there is any need for a larger project (or what might be necessary that would support the community there in Glasgow).

Two very different projects, therefore, and along with the genetics research are keeping me busy!

Incidentally the collection of data in the Deaf community for the genetics project is now complete and I will begin working on analysis of the data.  Information from hard of hearing people has yet to be collected but will start very shortly.  Results of the findings will be published in journals and presentations given to conferences in the future.

Apologies if that is a very dry rendering of where my life is with work in progress; but I just wanted to give a brief information update for now

Steve

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