genetics

Action on Hearing Loss (AoHL): supporting eugenics?

So the latest annual report of AoHL is out! This report, like many, may not excite people and I may risk coming across as something of a nerd to subject it to analysis, but I have my reasons.

 

A question I asked on reading it was: is AoHL strengthening its eugenics tendencies?

 

The reason for making a strong statement is due to their recent merger with Deafness Research UK, or DRUK. This group had many previous names, one being ‘Defeating Deafness’. Like AoHL, they’ve changed their name: RNID – Really Not Interested in the Deaf; Defeating Deafness, no explanation required, because of the negative connotations of the previous ones. And have now re-branded into a package that covers up some of their practices all the while implying that they exist for the common good of people with a hearing loss.

 

To quantify some of my accusations I refer to the words of the report, which make no attempt to hide the fact they are eager to support what they call the ‘hearing community’:

 

We award biomedical research grants to fund world-class research projects that will accelerate the development of medical treatments to prevent hearing loss, restore hearing and alleviate tinnitus. We also make grants to increase the numbers of trained research staff, build future research capacity and support small-scale activities that will strengthen the hearing research community. (p.21)

 

Small scale the activities they may be, but the report makes great play of the merger:

 

[DRUK’s] core purpose was the encouragement and support of hearing research, achieving this through the provision of grants for high-quality, UK based hearing research. We have a long-term commitment to funding hearing research as a part of our organisational strategy, and the merger will enable us to work together to invest more in hearing research. (p.25)

 

Hearing this, hearing that, hearing the other. Perhaps, when they feel confident enough to do so, they will rename and rebrand with a new name with the subtitle: ‘seeking a world completely free of deafness (and, by implication, deaf people)’. Hell they can go further and publicly welcome gene therapy, genetic engineering, and give support and encouragement to parents who want to select out for deafness (assuming the technology to do so ever become reality).

 

A look at the ways they back this up with hard cash is also very telling. In a note on the notes on ‘Grants payable’, £1,027,877 went towards ‘biomedical research’ with the intention to ‘fund future grants totalling £1,876,220’, almost double (p.43). The reader can discover where such funding went on page 42 of the report, for in spite of AoHL’s intention to fund ‘UK-based’ research they were generous in funding research in Australia, United States, Netherlands, New Zealand, and Germany.

 

Not all of the money went into genetics-related work, so what did AoHL fund that was? The report, again, gives us this information: ‘research into suppression of deafness due to a dominant mother gene’, ‘Biomedical research into the genetic components and underlying causes of Otitis Media’ [admittedly a painful condition], and its Biomedical research fund covers the following projects:

 

site specific gene transfer of neurotrophins in the cochlea for directing growth of regenerating neurons after deafness; RNA interference protects against hereditary hearing loss; and understanding suppression of deafness due to a dominant gene. (p55)

 

If, as a recent report by academics stated, we are on the cusp of a ‘second wave of eugenics’, AoHL’s work will be music to the ears of government (no puns intended).

 

I now subject the reader to some very dry bits of the report, for which I profusely apologize, but on the other hand, those who want further information of the results of the benefits of the merger with DRUK can find them here. I have so far written on the ideological aspects of the report: here I write about the economics behind the merger. Ideology and economics have knack of complimenting one another in politics.

 

For AoHL champion the financial benefits of their merger with DRUK. Without them, AoHL’s deficit would be far greater:

 

We delivered on our aims with an operating deficit of 0.9m in 2012/13. This includes the 1.3m income as a result of the merger with Deafness Research UK and, without this, we would have delivered an operating deficit of 2.2m (p.14)

 

To drive home the importance of DRUK, the report goes on to announce:

 

Our incoming resources of £37.4m are £0.1m lower than in 2011/12. £1.3m of this income is due to the Deafness Research UK merger and, without this, our total incoming resources would have been £1.4m less than in 2011/12, mainly because of reduced income from our voluntary fundraising income streams. This year, our legacy income was down on both budget and the previous year, which, again, is a sign of the prevailing challenges within the economy.

 

Nevertheless, AoHL received £3.3m from legacies alone, and a generous amount from various fundraising streams. In commenting on their overall balance sheet: ‘Current assets as at 31 March 2013 were £7.3m and, without the DRUK merger, they would have been £6.0m’ but there is a downside: ‘Current liabilities were £3.3m as at 31 March 2013 which would have been £2.8m without the DRUK merger.’ (p.16)

 

It’s easy to conclude that fears of posting a big loss is why DRUK have been welcomed on-board: i.e. it’s about economic reality rather than any overarching ideology. Nevertheless, the merger means that while AoHL are primarily involved in research into informing the public of hearing loss and in negating its effects, and the sums of money spent on eugenics-orientated research is fairly small in comparison to the income AoHL receives and spends elsewhere – e.g. total expenditure is £38.3m (p.14) – they have moved into the field of supporting biomedical, genetics-related studies that reeks of eugenics.

 

What all of this implies is that AoHL is, albeit tentatively and gradually, moving into the field of biomedical research aimed at eliminating deafness, but without any consideration of the wider ethical implications that ethicists and philosophers are warning about. Have AoHL’s shareholders and Board discussed the political implications of supporting the type of research DRUK was involved with, and which AoHL has now taken on board?

 

There is a risk of drifting into research that seeks to ensure hearing babies are born (not deaf ones), and that deaf babies will be prevented from doing so, or ‘cured’ of their deafness.  [Now where have we read that before?]

 

So, not only do Deaf people require legal protections from governments, but against organisations within their mist that brand themselves as being champions of those with hearing loss. I forward a hypothesis that by becoming pregnant with DRUK(s), AoHL have formed an embryo that seeks to be born without deafness, i.e. hearing.  In the process they have set in motion the negation of a negation: i.e. they sow the seeds of their own destruction but seek to evolve into a body that champion’s eugenics in relation to deafness. Only time will tell.

 

Maybe that’s not such a bad thing from AoHL’s point of view, but it also indicates that AoHL are politically active in research and policy that affects the future of Deaf people and the Deaf community.

 

Side note

The salary of AoHL’s CEO is listed as £101,353 per annum. To be fair, this represents a cut from the previous year salary of £125,454 but is pretty much a typical wage for the CEO of a charity, and remains well above the wage of which many can only dream. Such earnings have come under attack recently from a report by Mike Oliver in Disability Now.

 

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Genetic nightmares: is the battle being lost?

Because my reply to a Facebook friend’s post was too long, it has been turned into a blog entry.

To try to paraphrase the original message: the near future is looking like this:

Genetic testing isn’t going to focus on single genes any more, but to test all 20 or so thousand genes in our body. It’s simply cheaper and more cost effective, and enables patients to choose what they want to know about their DNA.

The testing of a deafness gene can therefore be offered as part of this ‘package testing’ – done through a process called sequencing. Deafness could be in there as part of a ‘medical conditions’ test.

All this appears to be being pushed through with very little consultation with the Deaf community (nor, indeed, any community); nor do they take into account whether such a practice is ethical.

“I get a sense the battle is over,” reports the individual, whose account should be respected given they appear to be a leading figure in the field of genetics where the deaf gene is concerned.

Here’s my response:

Many thanks for this, very valuable indeed, and full respect to the person who shared their thoughts with you 🙂

Here’s what I think. Knowing you are predisposed and doing something about it need to be separated. Do people want to know their entire genetic information, or even selections of it? Ok, I get there’s a big survey being done about it in the UK. But I can bet that if things speed up there would be all kinds of pressures on people to believe that it’s the liberal thing to want to know – you know the script.

Genomics could be highly useful in some cases – for example, if you go to the doctor complaining about an ailment, or if a child is born with a serious condition that affects, say, their health and growth, the genomics approach can identify the problem very quickly, and provide appropriate treatment. I’d love to see some advances on destroying cancer, in particular, for good, and if genomics can do that, great.  I highly recommend watching this lecture (it’s fully, non-automatically, captioned), as the speaker balances the issues – and highlights the role of economics and the military (this is not scaremongering in any way, it’s real stuff, Gregor Wolbring may shed better light than I can).

But to try and do something about a ‘condition’ such as deafness, a woman still has to go through an emotional process of Pre-Implantation Genetic Diagnosis, after going through IVF, to weed out embryo’s where there’s a significant chance of a baby being born deaf. Even then it’s not 100% that they will produce a child free of deafness. The alternative is they don’t have children, or find a partner where there’s less chance of producing a deaf offspring. A great bundle of fun that’d be.

Gene therapy is still not as productive or ‘advanced’ as scientists would like us to believe. Only last week there were reports about the lack of movement on stem cell research; i.e. it’s not coming to be the miraculous salvation the public has been led to believe, yet. We were told deafness was about to be eradicated in the late 1990’s, thanks to genetic and stem cell developments on furry little mice. Funny then to read a similar report recently stating almost exactly the same thing, 15 years later, leaving one to wonder what these people have been up to in their labs all these years. Refining the art of making over-claims in order to bag big research funding grants would be my guess. I would highly recommend reading Hilary and Steven Rose’s excellent book, ‘Genes, Cells and Brains’, which highlights why people should be skeptical…for the near and immediate future anyway.

Graham Turner and I, along with others, did some valuable research on the subject of Deaf people’s views about genetic counselling; Paddy Ladd and I have taken up the baton through our Leverhulme funded project, and are currently working on a monograph that puts things into perspective, charts a balance between sci-fi and reality. We found, through our research, that is the way it is.

Yes, things are happening. Fast. Scary. Depressing. Try Transhumanism for a laugh/cry. Gene therapy, especially, has started to flicker some lights, and there are serious people working on this stuff.

But I would suggest they are not ‘there’ yet; they want us to believe there are ‘breakthroughs’ around the corner. It makes sense for them to big it up because they need the money. It makes news, so the media are complicit. But there are reports of admissions that there are still 10-20 years to go to put things into practice on humans. Ironic that, since they said the same things 10-20 years ago.

Nevertheless, I take them seriously, but suggest they are posturing and positioning themselves to justify the need for new technology and systems once they breakthrough and find ways of driving society towards a Gattaca nightmare, all on the backs of Liberal ideology.  Action on Hearing Loss bringing on board ‘Deafness Research UK’ (an organisational euphemism for ‘let’s wipe out deafness for good and forever and be proud of it’) are obviously jumping on this bandwagon, in anticipation.

Social attitudes towards disabled people can shift though, thanks to high profile things like the Paralympics. Technologists and scientists are careful to ensure they talk about disease and disability in isolation, giving a glossy common sense feel that these things are bad, like putting an arm on the shoulder of the vulnerable and saying/signing: ‘you know it’s right, get tested, get rid of it’ all the while seeing pound/dollar/peso signs in their heads.  It’s up to concerned citizens to make the links and throw the discourse broader than genetics would like us to go; I guess academics would call it ‘being interdisciplinary’.

Now comes the positives, the good news. In the research Paddy and I have completed, our (albeit small scale) study shows, through focus groups, that people do shift their attitudes when presented with positive information about Deaf people’s language and culture.

The focus groups, by the way, were led by a hearing person, who was bought into run the groups, so people were not faced with a Deaf person where they might have felt obliged to change their minds. Probably just as well because seeing me, a Deaf punk, they may have changed their minds the other way.

We’d love to replicate that on a larger scale <hint hint>. When I taught on the ‘Enforcing Normalcy’ course at Gallaudet, students came up with creative projects to counter pessimistic and negative ways of viewing ‘normalcy’ and erratic scientific discourse. I was hugely inspired. These people are the future.

Our great battle with the clause in the HFEA wasn’t the only challenge to legal attempts to push through potentially eugenic practices: Deaf people challenged a eugenic proposal in California and got it thrown off the books. Positives can be found if you look for them.

Those who want to eliminate diversity would like nothing better than to make the lay public feel it’s all over, and while some things do come to an end, this is most definitely not it. There are some dark forces behind these ‘bright new future’ moves, who have the front to suggest that what they are doing is liberal. But they are effectively undemocratic and unethical, and don’t care.

Oops, that was a bit long, but in short: it is NOT too late. And as they say at the end of every episode of Crimewatch, after the viewer has watched several examples of people hurting other people, and making you feel the fear…’don’t have nightmares’.

The show goes on: Deafhood and Genetics – Part 1

After a successful conference on Saturday 10th November, ‘Sleepwalking into Eugenics?’ and the end of our Deafhood and Genetics project, the time feels right to try and pull a few things together.[1] [3] There have been two reports recently in the news regarding genetic experiments on mice and gerbils, both of which have been discussed in the Deaf community and via the news blog The Limping Chicken.

One of the struggles we have faced these last two years is how to share information that is coming at us like one tidal wave after another, and just as I’m about to type out something, it becomes dated.

A good example is when the project began, we learn (thanks to Anna Middleton) that a test had been developed to screen for 437 genes responsible for 448 childhood diseases. Several deafness conditions were amongst those screened, including connexin 26 and pendred syndrome. Tests to screen for several conditions would be publicly available by early 2011.  Soon after, hundreds of thousands of dollars were being pumped into a test to screen for 595 conditions, and in October 2012 scientists are reported to be confident that in the year 2013 it will be possible to test for 3,500: that is based on a test carried out on just four babies (three tests were successful). The current cost of the test at the time of writing is $13,500 taking 50 hours to process each test, but there are efforts to try to get these costs and time turn-around reduced.

There are now available, online, tests for 100 conditions by Counsyl, 160 by GenPath, and no doubt several more. There were reports that a test is being developed to screen for 66 deafness related genes using ‘next generation sequencing‘, which it is claimed can test these for less than $500 per sample (as opposed to costing $75,000 using Sanger sequencing). Finally, this very week, December 3rd 2012, there is a further test being developed for the market next year, a test which enables a person to find out exactly what gene made them deaf.

Let’s take a wider look at some of the tests. In one such test, for example, for $549 you can do a test for conditions such as: the tendency to develop freckles, earwax type, the secret of Viagra, restless leg syndrome, and eye colour. Tests are already available for depression, dyslexia, and bipolar disorder, along with far more severe conditions. It is hard to imagine a world of people without these and other ‘disabling’ conditions, and all the well-known and renown people with these who have made such invaluable contributions to society.

A report in New Scientist in 2006 found that 40% of fertility clinics in the USA were allowing parents to choose the sex of their child using Pre-implantation Genetic Diagnosis (PGD), but the rules are stricter in the UK, where sex-selection is banned (unless the birth of a child with a certain gender would lead to a serious illness). To carry out screenings in the UK requires a license sanctioned by the Human Fertilisation Embryology Authority (not to be confused with the Act of the same initials). The controls are a bit stricter, but over 200 conditions are already allowed for, with further ones pending.

When I scoured the HFEA website, initially I didn’t notice any deafness related conditions that could be tested.  But as Alison Bryan helpfully pointed out, the HFEA does allow this. There are two on that list I had somehow missed, the first is ‘Autosomal Recessive Severe Combined Immunodeficiency with Bilateral Sensorineural Deafness’. Well, I’d like to hope I’d be forgiven for missing that one – having looked it up though, I realised that the deafness aspect is combined with something a bit more serious, that sometimes results in a short death of a baby or child. The next one is less severe and is called ‘Sensorineural deafness – autosomal recessive non-syndromic’, and is one I was made aware of a couple of years ago by Alison.

However, it does not detract from the key point I was making in my presentation.  These licenses have to be applied for, and genetic scientists and clinics who propose these and try to get these approved play politics to do so.  This politics entails a public relations drive to try to obtain large sums of research funding. For example, Deafness Research UK, while not receiving government funding, has paid out £10m since 1985 to research on deafness, and has reported to be ‘excited’ about genetic developments. Action on Hearing Loss is similarly excited, and have their own biomedical section that fund researchers worldwide.  A cursory glance at AoHL’s documents, for example, elaborates on the problems deaf people face to try to justify why it needs a large input  of research funding. Here is an example of political posturing of a very public and overt kind:

“Hearing loss is a significant social burden: Hearing loss makes communication with friends and family difficult, often leading to social exclusion, loneliness and depression, and reduced physical well-being… Children are also affected by deafness. In the UK, about 840 children are born every year with a hearing loss. Communication difficulties can adversely affect education and future employment.” [2]

Statements of this kind may not be defined as political, but as the quest of science to find and discover cures and treatments.  This ignores the argument that science itself is not a neutral or value-free practice: some argue that scientific knowledge is social and culturally constructed (which requires a separate article).  The people who carry the political label are the ‘Culturally Deaf’ ‘demanding’ ‘Deaf babies’, a ‘sick’ practice, ‘immoral’, ‘daft’, and akin to ‘child abuse’.  Not my words, but those of journalists and politicians, which can be found on my powerpoint presentation at the Sleepwalking Conference.

Scientific developments do get reported by the media, but the news is selective, sensationalised and overplays their importance…at least for the time being anyway. A key part of the research project was to analyse the media and how it reported on clause 14.4.9 of the 2008 Act (now entitled s.14.4.9). When we achieved our funding from the Leverhulme Trust, we had a very strong desire to take this path, for not only was the subject still quite raw, but in-depth analysis of the media in relation to Deaf issues is rare in Deaf studies.  Given the depth of feeling within the community with regards to how the media reports on Deaf research and Deaf Culture, the media reporting on opposition to s.14.4.9 seemed like an ideal opportunity to analyse.  The media is very much a part of a system that manufactures a dominant perspective about ‘deafness’. I am not suggesting they do so deliberately, but it is a two way process. Science, generally, NEEDS the media (to legitimise it’s practices and justify the large sums of funding it receives annually) and the media needs science to have media stories to sell it’s newspapers.

We did a lot of research.  But at the ‘Sleepwalking’ conference we deliberately selected (sic) to report on:

a. what the future could see (presented by Gregor Wolbring)

b. the media’s role in pursing such a future (a presentation given by me)

c. what laypeople have to say about these issues (presented by Paddy Ladd, me, and Sarah Hirons).

We collected valuable information from: a. two open debates involving mostly Deaf people; b. eight one-to-one interviews conducted face to face or online; and c. interviews with two journalists, a representative from the department of health, and an academic.

We also set up a website. We started out with the philosophy that this had to be a bilingual website, from the word go.  Alas, that proved to be far more difficult than any of us anticipated, most especially setting up a bilingual forum, and in any case, the technology to do so (direct webcapture) wasn’t available until just a few months ago. [I have since learned that it would be technically complex to embed into our website, so we require more funding to develop it.]

Finally, but certainly not least of all, we set up an Advisory Group to advise us throughout the project. We held three meetings, including the final one on Sunday 11th November; this was also intended to be part of our data collection.

What I don’t want to do is ignore that data collection, but in two years it was a lot to gather and our analysing will be ongoing, way beyond the project, which was funded until the end of September, 2012.

Fact and Fiction

One of the key points I was making at the conference is that it is important to distinguish between ‘facts’ and ‘fiction’.

It’s a hard balancing act because developments in genetic science do raise very serious concerns as to the future existence of Deaf and disabled people. Rapid advances are taking place in screening for conditions and in the field of genomics.  I have already explained the testing for conditions; what is happening in genomics is that it is fast becoming possible to map an individual’s entire genetic code, at a shorter space of time and at a cheaper cost.  It is now predicted that GP’s could have every patients entire DNA on their computer; and it would be more cost effective and cheaper.  It would mean that if you go to your GP complaining of an ailment, they would be able to look through your DNA and identify what the problem may be, and prescribe a course of treatment based on that reading.

A key ethical consideration is: what happens if the GP notices something that you may otherwise not know about – for example, the percentage chance that you could or are developing a type of cancer.  Or, indeed, deafness.  There is a but…firstly, these are by no means definitely predictive; what they do is give the percentage chance of a condition developing, not its certainty.  Secondly, they do not prevent the condition, only identify it.

Since most conditions are not possible to identify until after birth (or until in later life), it requires post-natal genetic technology to treat or ‘cure’ these conditions. That has already been happening for some years now, particularly in the USA, where a blood sample is taken from all newborns (a prick on their heel to get the sample, just like in the film Gattaca!), and tests are made for some serious illnesses or conditions.  This allows doctors to provide treatments from an early age.

However, that’s very different from completely curing diseases, illnesses or conditions that have already developed; or, indeed,  ‘designing’ a baby: the field of genetic therapy and genetic engineering [or enhancements].  There have been experiments on mice and gerbils that have indicated these possibilities are getting closer, but there has been very little experimenting on humans. If we take a look at two news reports from the BBC, for example, the first in 1998 and the second in 2012, they are virtually identical. They report on ‘advances’ in research into the deafness of mice, and reflect on how this might restore hearing in humans in the future.

As Gregor Wolbring stated in his presentation, genetic enhancement (or engineering), is being developed, so it doesn’t mean nothing is happening because it is, but it is believed to be the future. Genetic therapy is being made more available; for example, genetic therapy has been approved in Europe to treat  lipoprotein lipase (LPL) deficiency,  but the scientific community is cautious due to some patients contacting leukemia and one teenager in the USA dying during a clinical trial.  That hasn’t deterred scientists (it’s just slowed them down), as the approval for LPL demonstrates. China is more relaxed about controls.

The massive media interest in these stories is tempered by the fact that to actually prevent a baby being born with a condition remains problematic. Screening identifies the percentage chances of a condition developing or becoming possible. Genetic counsellors can help to work out the chances parents have of passing on a disabling condition by examining family history and taking blood samples, while companies such as Counsyl and GenPath require saliva samples to work out the possibilities.  But the way to actually prevent the condition is still through the emotional, difficult and inexact science of, for example, taking blood samples of a mother who is pregnant, amniocentesis, taking blood samples of a fetus, screening of embryo’s through pre-implantation genetic diagnosis (PGD), etc.

Therefore, PGD could help parents select an embryo to increase their chances of having a hearing baby; however, they firstly need IVF treatment, which itself does not have a high success rate and generally leads to less healthy offspring.  There has been one example of a couple who tried this process to select for a hearing baby, but were not successful; and then tried the other embryo’s, but none led to a pregnancy.

The other way is to test the fetus and, if it is discovered it will be born with Downs, or any other condition such as tay-sachs or cystic fibrosis (and, indeed deafness), the only option would be to carry out an abortion.

Therefore, much of what is reported in the media remains over-hyped. That means the Deaf and disabled community have time to influence and affect science, society and prospective parents. This news is positive for those who argue that being Deaf or disabled does not equate to a lower quality of life.  The 3-4 genetic ‘abnormalities’ we ALL carry do not necessarily determine who or what we will become; there are also environmental factors. 

For these reasons, the potential for a Gattaca-type society, or the scenario as depicted in ‘The End’, is currently in the realm of hype. But that does not mean that if the science suddenly finds a ‘breakthrough’ that enables gene therapy or engineering to become cheap, painless and easily available, we will not see the emergence of ‘positive eugenics’, which is surely an oxymoron.

There is a movement to promote these developments, by scientists, writers, philosophers, journalists and many others. And it goes by the name of liberal eugenics.

[1] This project would not have been possible without funding from The Leverhulme Trust and the voluntary work of the following three people: Dr Paddy Ladd (as Principle Investigator of the project) at the Centre for Deaf Studies, University of Bristol; Sarah Hirons (who kept the media collection from 2007-2008); and Alison Bryan (who had also kept a collection of media reporting and other documents, and had painstakingly restored some important parts of the original ‘Stop Eugenics’ website that had been hacked and nearly destroyed).

[2] See AoHL‘s Biomedical Strategy 2011-2013

[3] I have put up all the powerpoints that were used at our conference, and they can be found on the deafhoodgenetics website through this highlighted link.

After birth abortions, my first half marathon and more!

Amidst the hectic life am trying to make some regular inputs into the blog on happenings in the ivory towers and outside of it – particularly Bristol life and all else. If you want to avoid the work and politics just go to the end headed ‘fun stuff’!

Genetics Work

On the work front life continues to be hectic, with all our interview data collected for our genetics and Deafhood project, we are now at the stage where we’re able to analyse data and the website, in BSL by Clive Mason, is up and running – hope people will contribute to the discussion forums to help with data collection on genetics issues 🙂

There’s only just over 6 months of the project left! Sociological research on genetics and Deafhood were put into perspective by the news that two geneticists who specialise in genetics and deafness won a prestigious ‘brainprize’ award of one million euros. [Thanks to Alison for this information.] Eh?? They will receive their award from none other than our Liz, the monarch. Their work includes the use of mice to carry out research experiments. It would be interesting to see what the one million will be spend on and a video has been released of the details of the award – a sign language version of this should be available soon.

I attended an interesting conference on the development of attempts to protect the use of genetic information via the use of anti-discrimination legislation at the European Level, which was held in Brussels. The key lead has been taken from the USA where they have already a law in place called the Genetic Information Non-Discrimination Act (GINA). There was a lot of overlapping with Disability Human Rights legislation and I found it striking that the lawyers and academics were looking to laws that have been developed thanks to the disabled people’s civil rights movement, and this includes Deaf activists.The law is chiefly to prevent discrimination against people in employment and insurance.

However, I am still trying to get over the concept of ‘after-birth abortion’: a euphemism for killing a newborn baby that was published in a peer-reviewed academic journal and received a strong reaction in defence of the original article. As the journal editors explain, this is not a new concept, but has been addressed by philosophers such as Peter Singer. This issue is a hard one to stomach coming as it does from self-confessed liberals.

Bristol Deaf Centre Issues

It’s good to be able to write positively (for now) following a meeting at Bristol Deaf Centre by Bristol City Council’s Health and Social Care department, last Wednesday 7th March. It was a cordial and frank exchange of views on the future of the departments services to the local Deaf people.

My summary of the meeting is that the Council recognise their actions could lead to the closure of the Deaf Centre that would leave Bristol Deaf people in a crisis situation (by the sudden withdrawal of funding that should have happened last November, plus the departure of staff who are under Avon Pension fund). So there will be the appointment of a Development Worker (over a period of 9 months) that represents, to me, a ‘stay of execution’.

Hopefully the local Bristol Deaf community will combine and communicate to spend that time with the new Development worker, developing a vision and future for the Bristol Deaf community – whether it means retaining the Deaf Centre or a different vision.

A lot of people have been working really hard to bring about this situation, including those who work at the Deaf centre as well as the Interim Working Group, legal advisors, and many unnamed individuals. There remains a lot to do, but there is a bit of time to sort things out. The Board of Directors, in particular, needs urgent support, which may become apparent in the next few weeks and months.

This news follows on from the news that hard campaigning has helped to save Elmfield Deaf School – so campaigning does work and massive waves of hands for those who worked hard to save the school!

Lighter stuff! running, football and rodolfo

I completed my first half marathon in Bath in the time of 1.59.21!! I’m well pleased. It was, unexpectedly, hot! Making for a tougher challenge, but fun and enjoyable, especially taking part with friends Pascale, Alison and John (cheered on by Naomi!), and taking in the Bath scenery.

£145 was raised for Bristol Deaf Football club, who are doing extremely well and have decided to enter a hearing league from September 2012! Then BDFC can show the world what they are really made of!

Rodolfo, from Mexico, had been on a visit to the Centre for Deaf Studies for two months and we had a leaving do for him last Friday – first a meal at Browns and then a drink-up at Woods. It’s been super having him with us and hope to make a visit to Mexico one day!

I’m back in the swimming pool, continuing my efforts to learn to swim – trying to get to grips with the breaststroke at the mo.

Future events upcoming

BSL debates at Bristol Deaf Centre are all set for this Thursday 15th March, and the BSL Symposium on Monday 19th March that I’m attending – there’s a banquet too on 18th March but cannot make that one.

Finally…

The brand new blog the limping chicken is looking good so far! Would be good to see more entries in BSL…which reminds me…!

TD

a personal perspective on paddy’s deafhood class on genetics

Before heading to the SIGN4 conference in India I took part in Paddy Ladd’s Deafhood class, where the topic was on genetics.  The key of the lecture was to explore the discourses around genetics and Deaf people with the events over the HFE Bill still quite recent.

The discussion ranged from how the discourse of genetics is generated and formulated by the media and the ways in which agencies and politicians percieve and construct Deaf people in relation to genetics issues.  The influences of past discourse is also evident, for example in the case of the couple in the USA who sought a Deaf donor to improve their chances of conceiving a deaf baby. Their impact on lay people was also explored. Critically, any discourse that challenges or contradicts the dominant was sought and found. Such discourse is a minority view, but nevertheless these represent critical evidence of how the hegemonic view is challenged. Where does that arise from, or how does it come about? There is particular interest in the way it happens and how it is communicated and to what audience.

Discussion moved on to the genetics campaign itself – specifically stop eugenics – the people involved, their political campaign, the approach they took and whether it had any impact or success. The impact was massive: the media coverage by radio, newspapers, journals, television, is probably the most widepsread coverage of any ‘Deaf issue’ in the UK.

In respect of the sense it obtained such coverage, success is probably not the correct word because it didn’t lead the scrapping of the clause although the explanatory clause was changed to remove references to deaf donors, but impact would appear a more appropriate one. It momentarily entered the consciousness of a wide range of laypeople who, had they read or heard the debates on radio, considered their own emotions and beliefs as well as those of Deaf people.

One of the most important debates from my point of view was the political nature of the campaign itself.  Stop Eugenics was meant to be non-hieracrhical; although a small group of people took the initiative in starting up the website, the media and political campaign, there was no formal committee as such, the activists did not seek to create a committee or organisation, but was very much a ‘do it yourself’ group.  People were constantly encouraged to become involved in ways that catered for what they could contribute to such a campaign: creative video’s, posters, taking part in media interviews. A separate group set up a march. Stop Eugenics wasn’t a formal organisation, but it was set up to campaign for the scrapping of Clause 14/4/9.

Yes, it could have become a formal organisation, but did not crystalise into one for a various number of reasons: that is a shame, but the ‘do it yourself’ nature of the organisation didn’t, nevertheless, stop identified individuals becoming identified with the campaign as it’s spokespeople. 

In single issues campaigns such as that of Stop Eugenics where a small number of people are active, a momentum is created, and if they use intense energy and effort to sustain they will eventually burn out. Some did suggest it became an organisational type of movement so it could have become, for example, a kind of FDP; however, there were some very positive things that did come from it, such as the national and international attention and cyber-gathering.

Here is where Deafhood could explore wider political activist movements, since it will find that all radical political movements that react and are formed largely in defence are ultimately limited: i.e. it isn’t unique to Deaf activism. All active campaigns rely on small cadres to keep the momentum going.

If you have a much larger number of active people (I mean thousands, not scores as in, for example, the FDP) what you will get is not reform, but revolution.  People are freed up to be active on a wide range of front’s that will test the established order to breaking point. You can see the parallels with so many different movements.

It was an extremely interesting class, and the debate continues. In a small way, I thought the Stop Eugenics movement brought to life Deafhood in very real sense: i.e. that Deaf people are not going to be guinea pigs in any legislation that wishes to bring small steps to their eradication. Politicians and the media may well have assumed they had quite a straightforward argument, but Deaf people who became involved indicated that isn’t quite the case. There are a large group of Deaf citizens who are happy to be Deaf and not dead.

The message made was that it is positive to be Deaf; Deaf people have much to offer and contribute to humanity; and the future of the Deaf world through sign language and Deaf culture has positive benefits to bring to humankind.

More Deafhood classes please! 🙂

Update: education, diaspora, genetics and group rights

An incredibly hectic period! It’s always busy, but these last three months have been a workload tsunami to beat all workload tsunamis!

Here’s an update.

Struggling with swine flu back in August, I wrote up an ‘Expression of Interest’ for a Centre for Deaf Studies project to evaluate the work being undertaken by the I-Sign Consortium. The consortium received £800,000 from the Department of Children, Schools and Families to undertake a pilot project into increasing BSL in education and within families. We are evaluating that project. Just beat the deadline by 4 minutes. CDS will soon begin the process of evaluation, using Theory of Change and Distance Travelled methods.

It promises to be a challenge, and we wait with interest to see how the project itself progresses in the next 15-18 months.

Secondly, I’ve been working with colleagues to look at the possibility of undertaking research on the concept of Sign Language Peoples Diaspora.  A lot of ground covered, but hope to have something published soon on our thinking around the concept of Diaspora. It’s totally early days for that.

Finally, the group rights research is slowly progressing. This coming Saturday I fly out to India to the SIGN4 Conference, where I am giving a paper on group rights. It’s entitled ‘Putting the World to Rights: Group Rights and Deaf Communities’.

In addition to having been internal assessor of a PhD for the second time, chaired and hosted a UK Deaf Academics meeting at Bristol, and undertaken some teaching on ‘Learning Skills’ on the MSc Deafhood course and other typical university-type work stuff.

Research I was involved with around genetics: Anna Middleton has published the work we did, including a DVD from the workshop in Cardiff last year.  There are two published articles in ‘Sign Language Studies’ forthcoming, all joint-authored, one of which includes a summary of media reporting of the movement opposing the HFE Bill. That is in the next issue of SLS.

No rest for the wicked!

Enjoy the festive break.

…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.

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[* 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.]