Research Project report: mental health needs of Deaf BME community in Glasgow

Last Tuesday I attended the launch of the report into the mental health needs of Deaf people from the Glasgow BME community. I gave a brief presentation of the research I undertook.

The project was a pilot to investigate if further research was necessary in this field.  You can see the full report here.

The work was undertaken last year while I was working at Heriot-Watt University and was in collaboration with Deaf Connections.  I worked closely with the Development Worker with the BME Deaf Community, and also the Asian Deaf Community in Glasgow during the research project.

The launch was under the name ‘Ishara’, a new word coined by the Asian Deaf Club , taken from the Urdu, Punjabi and Hindi languages, and means to make signs or gestures with the hands.

For more information about Ishara go here.

Celebrating Dot Miles at the BDA…some reflections on ‘the Vision’

Back fresh from the British Deaf Association (BDA) conference; my initial reaction is …. interesting!

Good to see a conference brimming with energy and enthusiasm, a full hall of people celebrating the memory of poet Dot Miles; and people getting involved in workshop discussions.

There is a new BDA Chair now, but I’d like to see some credit go to Francis Murphy (and all those involved in behind the scenes work) for keeping the ship going through rocky waters

Thanks are due to the BDA for allowing Deaf academics in the UK the use of a room to initiate a meeting: we are hoping to run a conference for Deaf academics as soon as we can secure funding for it.  In the meantime there is a new website that is accessible to the public and for the use of Deaf academics working within universities in the UK: www.deafacademicsintheuk.org.

Some things struck me from the BDA Membership workshops.

Far too many of the ideas coming out were focussed on short term work.  What happens short term can work well if it’s part of a long term vision or strategy.

Things people raised struck a chord and would be ideal for developing a longer term vision that could help focus short term work:

A. Building the bridges with the younger generation of Deaf people.

This came up repeatedly (and it wasn’t helped that there was a glaring lack of young presence) but short term solutions seemed hard to shake off.

Mainstreaming is now the norm, the cochlear implant generation will surely be entering citizenship in larger numbers in the coming years.  How can the BDA encourage and welcome a generation who have probably not been able to access sign language, or Deaf culture?  How can the BDA assist in developing Deafhood?

I have no easy answers to this issue, but suggest some kind of strategy is necessary to encourage whom Paddy Ladd called ‘Deaf street people’ to participate in keeping sign language and Deafhood alive for future generations.

Unfortunately there were not enough Deaf young people present to help take that debate forward so it might be time to think of how the BDA can actively go to where the young people are and learn from them in their own geographical spaces.

B. Networking politically.

A guy brought this up at the workshop session and that point he made was hugely valid.

I’m thinking particularly of the genetics campaign; sure, the clause that was campaigned against wasn’t overturned, but there were rich political networks that activists were able to tap into and have an effect and influence thanks to hearing political allies who shared the concerns of Deaf people over the HFE Bill.

The point isn’t necessarily winning the battles you fight; if it means losing a few to learn new skills to help to win a longer term war, those losses will have been worthwhile.  If you don’t fight you never have any chance of winning anyway.

A long term strategy to build up long term relationships in the field of politics, so that anything to do with Sign Language and Deaf education becomes a BDA issue, and not an RNID or UKCod one will take a few years.  You need a longer term vision in the first place though.

Central and crucial to this is political networking involving some kind of strategy for engaging with parents; which again I’m not an expert on, but some kind of debate needs to take place with how that might be achieved.

People are still getting up at these conferences and talking about the need for action; there were some complaints the BSL marches of the past were ‘too passive’.  It’s an important debate to have but political action takes active people doing active things; it involves risk taking, boldness and being prepared to confront.   I never remember the Wolvie Six telling people they needed to block the roads, they went out and did it!

The BDA is not a direct action political organisation though, it can’t be expected to do everything; and in any case historically any kind of activism has traditionally come from outside the ranks of the BDA.  That doesn’t mean the BDA members cannot lend support to action that does take place.  The BDA itself could run workshops on the issue, perhaps.

One final question related to the conference: why weren’t hearing people allowed into the Interpreting workshop?

Finally a real highlight of the weekend was the train journey home to Bristol.  The journey was such a brilliant communicative event that it hardly mattered how many times we had to change seats not knowing they were reserved, and never before was I so un-bothered by a crowded train.

Capitalism goes into a spin; but what does it mean to the Deaf world?

News just in has seen the vote for the $700bn ‘bail out’ plan fail in the US, and the markets dive yet again.  The only thing that surprises me about these events is that anybody was ever surprised about it at all.  As long ago as 2002 there were warnings that this is what would happen.  And everybody in the financial world has been bleating on for ages that a bubble is being created that is fit only to burst. Governments generally tended to believe that the market would eventually right itself if left unregulated and to its own devices.

I’m not going to pretend I understand the fine and technical details of what is happening: hedge funds, equity savings, and the impact of short term investments are beyond me; but anybody who takes a moment to look at what is happening will notice all is not well in the finance markets.

But two things are being forgotten that I think are worth considering.  Firstly, those interested in making profit from capital will not be the main ones to suffer: it will be those already struggling to make ends meet as banks and services start to tighten up lending and increase prices to make sure they retain their profit margins.  I can’t be the only person on the planet to notice that even though the price of a barrel of oil has actually been falling in recent weeks, petrol and energy prices have stayed rooted upwards. While it is working people who will be expected to bear the brunt of the crisis, the panic will surely be the middle-classes.

What does all this have to do with Deaf people one might wonder? Socio-economically, I’ll suggest that Deaf organisations will be at risk of seeing ‘progress’ being reversed, as programs that rely on funding are scaled back: we’ll find ourselves looking at the similarities we have with other groups, the need for solidarity with those who are also affected, and the class-based nature of our society will become ever more exposed.  These issues may end up cutting through Deaf/hearing lines, and giving rise to differences within Deaf studies on the nature of our society.  As I have written elsewhere, often the nature of the ‘hearing society’ in which we live is contested, but is often never made explicit on the basis it is considered ‘not a Deaf issue’.  Deaf studies can, of course, be a separate area and sphere of study, but I’d suggest when we get events like this happening, it can have its limits unless tied into a relationship with wider epistemologies.

Secondly, although the news is looking dire, this will not frighten those whose job it is to make profits; this will be considered an ‘opportunity’ – to make money and profits from declining stocks, perhaps for longer term profits.   That also shouldn’t come as a surprise because our entire system is underwritten by this very factor: i.e. competition for money, resources, stocks, etc; and those involved are trained to see it in fiscal rather than human terms.  This is in no way to de-humanize those involved in buying, selling and profit-making, but to simply underline that the world has suddenly become obssessed by what happens to cash.  And as the old punk saying goes: some will be out to make cash from chaos.

Our modern day politicians are too used to the idea that the market can solve the problems; indeed their careers have recently been spent fine-tuning arguments to favour a form of the market, even if it might be called ‘market-socialism’ (an oxymoron if there ever was one).  Now it is cracking or creaking or whatever they have no alternatives; they look to the ill-patient to get them out of the rut.

I’m not one of those who takes great joy in the problems experienced by capitalism, much as Ive never been a great supporter of the system, and that’s because every crisis creates misery and makes it much harder for people to enjoy a good quality of life.  Some even struggle to survive.  Protest or even revolts are not inevitable, in spite of how people might like to think of a misinterpreted marx, but the chances of them happening rise because people may see they are being made to pay for a crisis not of their own making.  Deaf people may find themselves faced with the question of whether to get involved in these movements, and they will be faced with what to do to ensure they can take part.

I am interested to see what Deaf people are making of this situation; not only with regards to their personal point of view, or with its affect on Deaf communities; but in terms of how this affects Deaf people in relation to the system as a whole.  One of the questions I would ask is whether these events are considered a separate political/economic issue to what goes on in the Deaf world; but more importantly, if they are connected, in what ways might that be so?

Moving on and apologies

My many apologies for not keeping up to date with this blog So I am just writing a brief summary here for now.

But…a lot has been happening, I’ve not been away on holiday.

Firstly, I am moving to University of Bristol from the beginning of October.  To my delight I was awarded an early careers fellowship from Leverhulme Trust.  This is a two year fellowship and will enable me to continue working in an academic environment.   I’m particularly pleased given that I’ve spent the last two years on short term contracts; valuable as that experience has been it’s stressful working on contracts that last less than a year.  The piece of research I will be undertaking will be exploring the concept of group rights in education, with deaf children as the case study.  This follows on very nicely from my PhD in citizenship, where Deaf people expressed serious concerns for the education of deaf children, and this fellowship will enable me to investigate this further.

But first of all, there is work to complete and I have been keeping busy with analysis of research that has been undertaken on Deaf people’s attitudes and beliefs on genetics.  We have our workshop at Cardiff on 18th September to disseminate the findings.  I’m also giving a paper on the subject at a conference in Amsterdam on 25/26 September, and will be at the Centre for Deaf Studies 30 year celebrations in Bristol on 27th September.

My small-scale but important piece of research on mental health in the Glasgow Black Minority Ethnic Community has been complete; I’ve written up the report and that is due for launch and publication in November.

I’m particularly pleased that a 7,000 word peer-reviewed article I wrote on citizenship is due to be published in Citizenship Studies; it’s a good summary, I think, of what my PhD is all about.

On a lighter note, I managed to catch some of the Edinburgh Festival amidst all the work, seeing two signed comedies and watched three mime-comedies as well as some street theatre and a fab exhibition.   And I treated myself by buying a replica Brighton and Hove Albion away strip that arrived today, but my excitement was dampened cos they lost today for the first time this season 4-1   Oh well, the players are probably all excited about facing Man City (and Robhino?) in the Carling cup…

…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]

—–

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.

—–

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