deaf

Letter to UK Border Agency re: Lawand Hamadamin, age 6

UK Border Agency

East Midlands Reporting Centre

10 South Street

Loughborough

LE11 3EY

 

Monday 2 January 2017

 

Dear Sir/Madam,

Re: Lawand Hamadamin

I am writing (in a personal capacity) against the deportation of 6-year-old Lawand Hamadamin and his family. They must leave the UK on or after 9th January 2017 or face deportation.

I am a UK born and raised citizen who became deaf at the age of 4 from meningitis. I have worked as a deaf advice worker and now work for Citizens Advice in project management. I am a qualified counsellor since 1998, and I obtained my PhD in Citizenship and the Deaf Community in 2007. Since then I have taught and researched at universities in the UK and the USA. I also have many peer reviewed publications. Thus I am in a position to understand and appreciate the impact the deportation will have on Lawand.

I oppose the deportation for several reasons:

  1. Just when he is beginning to develop a language, British Sign Language (BSL), Lawand will become unsettled. This will have an adverse psychological impact on him.
  1. There are no guarantees that the family’s application for asylum in Germany will succeed.
  1. There is no guarantee the family will find a place at a German school that will allow Lawand to develop Germany Sign Language (DGS) and a deaf identity.

Lawand has been attending the Royal School for the Deaf, in Derby. There has been a positive impact on his life and wellbeing. Lawand and his family have already had a nightmarish journey to get to the UK. They have suffered enough and deserve a chance at Derby where they have begun to settle.

I understand Lawand and his family were first registered in Greece and Germany. I also recognise that the intention is not to return him to a place of danger, i.e. Iraq. But recent tragic events in Germany show that safety there is not guaranteed.

If the UK Border Agency deports Lawand it will disrupt his development. Assuming he relocates at a deaf school, DGS is different to BSL. He then must learn two new languages, DGS and German. Allowing him to remain at Derby with the support of the school is vital for his development as a young deaf boy. I have worked with the school for a short time in the past and can testify to the high standard of quality and care. He has had a positive impact on everyone in that city, who have treated him with the utmost care and respect.

I appeal to you to reverse this harsh deportation and allow Lawand and his family to remain in the UK.

Yours faithfully

 

Dr Steven D. Emery (in a personal capacity)

c.c.

Ms Amber Rudd, MP, Home Secretary

2 Marsham Street

London

SW1P 4DF

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Discussion points: at the intersection

Our article was intended to provoke debate, so thanks to everyone who has contributed so far.

Putting aside access issues for the time being, I really feel the need to bring discussion to the article. Mainly also because some of the contributions are going into areas which I feel are not quite ‘getting it’, as Alison put it. It was also something that cropped up in the lifeinlincs debate a few months back, so I am going to take this opportunity to clarify, as briefly as I can, what we are trying to get at.

I’m also sure people will recognise that the issues we address in the article are as relevant to other fiends of work too.

First, our article isn’t intended as a contribution to the practicalities about how Deaf and hearing academics can work together, although there is a strong overlap. Nicola Nunn is currently doing her work in this field and will have far more to contribute than we do. Do please keep an eye for the presentations and work she’s doing in this field.

Second, as has become apparent, it’s a *reaction* piece. As Alison, Sarah, and others have pointed out, reading the original gives our article its crucial context. It reacts to an article by two authors.

Thirdly, while we do elaborate on how and why hearing academics are able to advance their careers in relation to Deaf academics, our key concern is the fact that this situation risks remaining unchanged in spite of a growing number of Deaf academics. [It greatly concerns us when some have written that they didn’t feel as supported as they could have been. I also know several had to withdraw academic studies through lack of support.]

To us, the original article can best be visualised as follows. Imagine a newly born dog, yapping and yelping and learning to live its life: the article was the equivalent of kicking the poor mite cos it is constantly barking at them. Of course, the authors in no way intended that, but that’s how it came across when we read it (the barking dog in question? ‘Deaf academic power’). Where do hearing academics stand in this new power development, they stated? We think there are problems with the questions, but you really have to read their article to form an opinion, I will not be doing those authors any justice by trying to sum it up here.

Two things: one we do recognise there is a growing Deaf academic elite in the UK, but, like we say, it’s a yapping little dog right now. Nevertheless, we do have to think about how that might develop into a confident, assertive, self-reflective, transparent, forward-thinking, truly diverse, intersectional breed. We want to encourage Deaf academics to think about their relationship to academia and the community: these academics (yes, Dai and I included) get prestige and advantages from our positions and publications [more on that later].

Secondly, without in any way meaning to discredit or alienate people who are working hard in unity with Deaf and hearing academics, it’s painfully hard to ignore the fact that this discussion is taking place against a background where privileged hearing academics are able to gain prestige, experience and status through hard-to-fund research projects. When we see yet another project that either excludes Deaf academics, or sees them situated in a lesser status in relation to it, we feel it.

A more appropriate question is: what tools can be created to enable Deaf academics to lead Deaf-related research projects, departments, and funding? The balance of hearing-Deaf academic power is hopelessly outweighed in favour of the former; nobody will deny that, but the question is: are you willing to find ways of relinquishing power to enable us all to redress that imbalance?

Now, of course, we have been very careful to qualify that when we say ‘Deaf Power’ we don’t mean some oppressive ruling structure that simply replicates the one that already exists, to replace one with another. We also certainly don’t mean it excludes hearing people as we have been at pains to say. And Deaf academics have a huge responsibility too, because looking around at us, the majority are white, middle-class, and our research is barely accessible to those who are not English literate; men outnumber women, and there is a glaring lack of black women and men, disabled deaf people, and many others.

Crucially, also, what is the nature of most of the research, another question altogether, but an important one.

These brief but key points are the thrust of our article. Within these thrusts we can find space to address ‘on the ground’ issues such as hearing/deaf relationships in academia. Owning up to privilege is key for us all: not to push people into some guilt trip, but to seek ways in which we can all drive research into the direction which recognises and encourages Deaf community self-determination, at the intersection.

Culture and Active Citizenship

It was great to see Lillian Lawson and Brenda Hamlin give strong and meaningful presentations related to citizenship at the BDA conference last weekend.

Nope, I didn’t get to fly in to Derby from Barranquilla, nor watch it streamed live – I couldn’t manage a 4am wake up, so watched them later on and got bits of the AGM.

Active citizenship is the bedrock of civil society: a passive citizenship is indicative of an apathetic nation and enables governments to get away with social injustices. As Lillian showed, active citizenship can relate to a very broad range of activities.

My thoughts were on other matters.

A regular question was the lack of young people involved. I think only 4 or 5 of the 40 people were under 25. I’m sure I’m not the only person to be tired of facing this question: for something like 30 years it’s been an issue.

This makes little sense politically given the huge success of the FDP at getting young people involved in politics, and the impact of the Spit the Dummy group: there is no lack of politically minded young Deaf people, neither is the community in decline (as BDA figures showed). It’s just that they don’t see the BDA as the place to be politically, and find pubs and social networking more appealing than a trip to the local Deaf Centre.

I have the utmost respect for those like Brenda who are working tirelessly to address these issues. I was involved with Bristol Deaf Centre for a short while, where we faced terrible problems due to government cuts and previous Centre mismanagement – it was a thankless task trying to sort out the problems.

On Sunday, however I was left asking the painful question: is the BDA the future of the Deaf community? Should it try and pave the way for a newer (non-charitable?) group or organisation, maintaining links with EUD/WFD? Is it worth shutting down and starting all over from scratch under a different, modern, up to date guise?

I somehow doubt that will happen, but whatever the possible solutions, there was one word/sign on my mind: culture. I don’t think it was once mentioned, which, given how important it is to the language and community, is surprising and worrying. Do people take it for granted nowadays? ‘Yeah we got a culture we know that blah blah’, or not think it’s the most pressing issue?

If there is one question I would have liked to ask it would have been whether there are any serious attempts to develop discussions of Deaf culture throughout the UK, with young deaf people today? Is the notion of ‘identity’ more prominent? It’s more surprising culture isn’t addressed given the Deafhood notion was born in the UK.

I have to admit that I have not paid this issue much attention in my work on citizenship, and it is only through privileged visits abroad, and my move to Colombia, that it has really hit me hard how important cultural workshops and discussions are. That could be a bridge to younger people becoming more political active: this should not be a strategy but a natural process.

When I am privileged to be part of these experiences, and I tune in to watch a national Deaf conference with so few people (young or mature) present, with little discussion on Deaf culture; I can’t help but feel that lack of in-depth, meaningful, cultural exploration is one of the most important missing links in the demise of active citizenship in the UK.

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.

 

A human ‘Iguana’ in Colombia, and why bridges are a good idea

“Iguana, Iguana, Iguana!” the little girl shouted, pointing to me. I laughed and bought a little bracelet off her for 1,000 pesos. I’m living amongst Mohawk-reptiles, bats, wild parrots, many other bird species, and ants. Zillions of them. They populate the dwellings of Cali, Barranquilla, and right here, invading kitchens and pouncing at anything sweet. Humans cook and eat the bigger ants [they taste like popcorn apparently], so they are obviously getting their revenge.

It’s so hot that walking out my front door every day is just like walking into an oven. It hadn’t rained for almost a year down this way, and yet in just three days it has poured down twice. It was tropical rain following thunderstorms, or a warm welcome for the Englishman, it’s hard to know. I’m a Deaf English guy living amongst hearing people in a small village and so far, after many socials, shopping and beach trips, all is going well and I have made some friends.

It only struck me when I was there, on the gorgeous, picturesque, sandy, Caribbean, virtually people-free beach of Mayapo, that these are places north Europeans would normally only head to for a holiday break. Here, for those of us fortunate enough, it was a ‘local’ beach visit. [Ok it did take a few hours’ drive to get there.] There was a hammock and after a dip in the warm ocean, I swung on that for a bit while reading Jack Kerouac’s ‘On the Road’. The visit reminded me of being a boy and within a stone’s throw of Brighton and Newhaven beaches; only it was less humid and often cooler. There were no hammocks there but they were good times nevertheless.

The drive to the beach [and to Rioacha, where we shopped and ate the weekend before last, and the one before that] is rocky driving for the first half hour. Thereafter the roads are kinder. You can stop by the roadside and buy sweet products for sale in tubs. Beats many chocolates I’ve tried in my lifetime. A lorry was overturned in the road, resting on its side, which was a reminder of the haphazard driving around these parts. Our driver often drove on the left because the right side was full of holes and bumps. It was all a breeze, though, compared to India. We passed a military tank on one of the streets last weekend, not sure why it was there. Far more common is the gasoline for sale in plastic containers or steel tanks, no doubt obtained from across the border in Venezuela. The people selling the petrol are always busy, unsurprising given this product is so cheap. [Fun fact: Venezuela petrol/gas is the cheapest in the world.]

Now when I write ‘hot’ it’s always over 30 degrees centigrade during the daytime – often it’s in the mid-30’s or above. Humidity is difficult to measure, but it’s pretty dense. Always. Respite outside comes at evening, where it drops to around the mid-20’s. Thankfully, we have air-conditioning; otherwise it would be a struggle to survive.

I run at 5am in the mornings, but last week managed a 5pm run, albeit for only 25 mins. Nearby, there’s a nice quiet road to run down, over a rail track and around a golf course. So one morning I passed over the track and turned left, and ran 1km beside said course, turned left again to run across the track, only it was blocked by a *very long cargo train* going *very slowly*, so I headed back to where I had originally crossed but when I got there the train was still struggling. The rear of the train was near, however, so I stopped and waited for it to pass. This experience is an example of why bridges and underpasses are such a good idea.

There is still a lot to do since moving to Colombia over two months ago. Write up the research articles that have been building up for years. Learn Spanish, especially. Get used to the culture of the ‘north coast’, as my partner calls it. Obtain my visa to enable me a long term stay. One of the highlights, so far, is the film nights; largely alternative, non-Hollywood. We went round to watch the remarkable film ‘Cloud Atlas’ a couple of weekends ago. It didn’t have English subtitles, but the guy’s son kindly downloaded them so I could enjoy the film amidst company. Cappuccino and a lovely Italian-style cake were served, one of many such nights one hopes. In between we can access the gem of a website watch32.com, which puts up subtitles of English language films.

Now I do miss Bristol and friends at home, as well as some of the English cuisine, especially baked beans in tomato sauce. But with the abundant delicious fruits one cannot really complain. On that note I squeezed 12 large oranges via a juice extractor which made 1.5 litres of fresh juice. Grapefruits are scarce, but the local shop was selling them so I eagerly made a purchase of a massive three. Half a litre.

Things have not been all hunky-dory; there have been numerous frustrations with bureaucrats, faulty shopping products and some utterly pointless security checks. And yucky ‘potable water’ that leaves dirt taste in the mouth. They will surely be taking up blog space in the coming months ahead. But with a gorgeous Novia, juicy fruits, ice cream, ‘jet’ chocolate, endless hot days, an easy-going pace of life, friendly people, and excellent fun football Friday’s, it’s been a great and happy start to my new life in a South American village so far.

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’.

Collective minority group rights: some considerations

In this post (which is a bit long I’m afraid. and unavoidably abstract in places), I write about collective minority group rights*.  This entry follows my viewing of the BDA/DCAL event [19th March 2013] to mark the 10-year anniversary of British Sign Language (BSL) ‘recognition’. As I wrote in my previous entry, the event has thrown up a grassroots Facebook campaign group, spit the dummy, calling for a BSL Act.

Introduction

I want to focus on something Paddy Ladd raised at this event, that any BSL Act should take into account that Deaf communities are collective in nature.  The way legislation is framed, the rights of the individual tend to take precedent, and the reasons for doing so date back to the end of the Second World War. Any campaign for a BSL (or any other language) Act therefore tends to focus on individual rights.

The question I pose here is: can a BSL Act incorporate any elements of collective minority group rights? If so, what might these be? The Grumpy Old Deafies blog has already fired off some excellent examples of which parts of legislation any Act or campaign could target. It is a sober and direct article that pulls no punches: the place to begin is the United Nations Convention on the Rights of Disabled People (UNCRPD), it states. What I will attempt to do here is look at things from a different angle, and hope that it will be of some use to activists, because I have been researching, writing and presenting on the subject for around 5 years now. It is written to outline what my research has found, and share my critical thinking from the process of conducting it.

Now I have nothing against individual rights but I don’t think they go far enough to protect collective communities.

As Bob Duncan kindly reminded me in my previous entry, we are at the tenth anniversary of the publication of Paddy Ladd’s seminal Deafhood publication. [1] Understanding the notion of Deafhood has been slow to take off in the UK, but it remains a powerful concept that has had a big impact in the USA, while the book has sold in numerous countries and several languages. At the March 19th event Paddy repeated what he had raised in that publication, that Deaf communities were collective in nature, but government’s individualist ethos did not take account of their needs. But what has been missing from discussion on recognition of Deaf communities collective rights is the detail of how they can be enacted, aside from seeking recognition from UNESCO[2].  An appeal to UNESCO is something I support, but at the present time the WFD are heavily focused on the UNCRPD.  I seek to address the issue of how group rights might work in practice, from a national level.

When considering group rights

There are three important considerations to bear in mind when looking at minority group rights:

1. It is important to distinguish between the right (of individuals) to form into and belong to a group, and the rights of peoples (collective) who belong to a group. There are hundreds of thousands of different groups set up that only totalitarian governments would deny: from political organizations to common interest groups (sports, social, and so on).  The British Deaf Association is one such example of a group that members belong to. An example of a cultural group right would be those of who, say, follow a religion which has established traditions: they may, for example, feel strongly about abstaining from working on a Sunday; engage in prayer five times a day; or eat kosher food.  These may be practiced by individuals but they are essentially about cultural group practices that these groups peoples’ undertake.

2. How could group rights be enacted in practice? There is no denying that this would not be an easy accomplishment given that in the West individual rights trump collective rights in almost all cases, but it is not impossible. To give two examples of how this happens in Europe and the USA. In Romania, because they have so many language minority and cultural groups, their democracy is constructed so that parliamentary seats are allocated proportionate to the size of each group. In the USA, after the passing of the Civil Rights Act of 1964, some states approved ‘minority-majority’ voting districts, to ensure that voters had the chance to elect African-Americans, Native Americans, and Latin@** people to the Senate.

Outside of Europe, group rights are more acceptable: in South America, for example, indigenous groups in Bolivia and Colombia are allocated seats in their respective parliaments. In India, the tiny Farsi religion has its cultural rights protected. Africa, however, is one of the foremost examples: the African Commission on Human and Peoples’ Rights fully recognizes group rights – but has only recently done so, which is an indication that the African nations could no longer deny their countries are made up of multiple cultural groups that are in need of protection and recognition.

3. So what forms of group rights are there? Now of course, context is critical and an important aspect of minority group rights is that it is quite broad and can be flexible. The theorist I draw on here is Will Kymlicka, who incidentally has pondered whether Deaf communities should be given group rights (he said no, but only on the basis that it could lead to a multiplicity of claims from wider disabled groups [and what is wrong with allowing disabled people to have group rights, since they are also under threat from genetic developments?]).  In Kymlicka’s view, group rights is not incompatible with liberalism, and that is a contentious point. According to Kymlicka there are, broadly, three types of minority rights:

i) self-government rights

ii) polyethnic rights

iii) special group representation rights

With self-government rights: this is where a minority either seeks to secede from the State, or have some kind of control within it. This will have a familiar feel to UKers right now because of the example of Scotland, where there is to be a referendum on independence from the UK in 2014.  Quebec is another example: French speakers have long been campaigning for a separate State, as have the people of the Basque region, who want independence from Spain. There are many other examples, including in India where there are several State demands to secede from the Indian State.

In the mid 19th century consideration was given to the notion of setting up a separate Deaf ‘Commonwealth’.  This didn’t gain credibility amongst Deaf people at that time.  Most recently, in 2004, some people tried to set up a ‘Deaf town’ called Laurent, it failed to gain planning permission and eventually collapsed.  However, by and large we don’t see Deaf communities demanding a separate homeland – they want to access mainstream society. Spit the dummy testifies to that aspiration.

Self-government rights, therefore, generally relate to enabling a minority some form of control regarding the protection and preservation of a peoples language, cultural and national practices. In the UK the Welsh, Scottish and Northern Ireland assemblies are examples.

Polyethnic rights are, generally, those of cultural groups who come to a nation state voluntarily, or are forced out of their state through persecution or war; for example, immigrants and refugees. They are expected to integrate into society by, for example, speaking the language of the nation, respecting its laws and customs. However, even so, these groups still require rights to protect their cultural practices; in the UK we are familiar with multiple minorities being provided with Interpreters, for example; but they bring their culture with them too, and the State is benign as long as the individual’s rights are not violated…for example, arranged marriages are ok when they are consensual, forced marriages aren’t. Exemptions are often granted to respect cultural practices: for example, Sikh’s are exempt from wearing motorcycle helmets, others include the right to wear the veil, and time off to take part in religious festivities.

Finally, special group representation rights are probably the type of rights that Liberal governments find easier to grant. A bolder form of such rights would be to reserve spaces in the Houses of Parliament for Deaf representatives. In South Africa this idea has been discussed, mainly because there is already a form of group representation rights in the South African parliament. It is suggested that seats be reserved for Deaf and disabled community representatives. But these could just as well apply to any level of government – e.g. within government departments such as education, within local councils, etc.

Internal restrictions or external protections?

There is one important issue: do those who demand such rights want them for ‘external protection’ or ‘internal restriction’? We can say with confidence in the case of Deaf communities that they are the former – protection of the language and culture; protection from harmful medical practices, and so on.  In this case they are more likely to be granted, since internal restrictions are considered to be ‘illiberal’. Some might suggest that there are internal restrictions in the form of suppressing speech, but the practice of sign bilingualism does not entail restricting or stopping speech, contrary to what many in the medical profession fear. Far more alarming are the developments taking place around genetics, which pose real threats to the community, and reinforces the urgent need for protection.

Putting group rights into practice: some thoughts and suggestions

Having given a brief outline, what might group rights be able to bring to the debate in the case of a BSL Act? I offer no clear cut blueprint, but I do offer some suggestions as to where discussion might start:

i) The Act is not only about enabling the language to thrive, it is to protect it.  In order to protect it, however, it requires putting into place elements essential to the group (and not only the individual). In a research project I undertook, what these group rights entailed was not easy to define, so, far more work involving the community is required. But as a starting suggestion, some or all of the following would flow naturally when there is a focus on what cultural practices are important for the group. The main focus was on protecting deaf children, which is understandable because they are the future community. The spit the dummy campaign incorporates a wide range of sphere’s where inequality and second class citizenship is rife, but here’s a starting summary[3]:

Sign language requires deaf children to be educated together. Deaf teachers and assistants are essential as role models. Time and space is needed to ensure the group has space to develop its cultural mores: Deafhood development, poetry, drama, story-telling, Deaf space in the form of  local Deaf centres, television channels, a Deaf studies curriculum, expression of minority groups within the Deaf community (such as Black deaf culture, Asian Deaf culture, issues affecting Deaf disabled people, Lesbian, Gay, Bisexual and Transgendered Deaf people). Finally, and certainly not lastly: Sign language development is critically vital, and that requires language planning.  In all of these factors, deaf children are not the only individuals being protected, such protection and development requires a more concerted input from adult Deaf people: as teachers, elders, producers of culture, role models, sign language tutors, and so on. It would require a long process of community repair.

ii) These could be enacted as part of a process of natural justice, as opposed to, say, freedom of choice.  That is really critical: Deaf communities, and that includes some of the most radical activists, tend to pursue an agenda for ‘informed choice’.  A language Act that misses out the group nature of the Deaf community, one which tries to insist purely on individual rights, and which pushes for informed parental choice, is ridden with contradictions. If there is free choice, then hearing parents who wish to pursue a path of oralism have every right as those who wish to pursue sign language. And this is precisely what Deaf communities argue is unjust…and yet there is a continued pushing for individual rights: that needs to be reviewed. Free choice is damaging and suits those who see deaf children and adults as having a medical condition.

The medical profession intervenes in the life of individual deaf children; it is a culturally embedded practice within the health system; and it is therefore a political force. The methods these professions pursue are not ones of free choice. They thrive partly because they have become historically embedded, but also because they possess far more cultural and social capital with which to pursue a normalizing agenda. My reference for this argument is the excellent research undertaken my Laura Mauldin [4], who spent an extensive period of time interviewing professionals and parents in the process of cochlear implantation.  At the risk of generalizing, the entire system is structured around medical practices, from the day of the birth of the deaf child, and they actively seek to persuade parents to try out normalizing procedures.

Deaf activists can therefore justly suggest that what a BSL Act requires is a kind of intervention, one that will not reject the need for an audiological input, but which is centred around ensuring the child has access to their natural visual environment, and they are able to develop and express themselves through this visual language. That would be their cultural group right.

My suggestion is that the very reason why Acts around the world have so far been ineffective is precisely because they do not have a strong cultural underpinning. It is supremely critical to get this right, as it can be a basis from which to build support amongst the wider population, such as parents, other minority groups, the trade union movement, community groups, hearing allies, and so on.

What group rights might a BSL Act incorporate?

So, what form of group rights might a BSL Act try to incorporate? The case of Deaf people is interesting because it may require bits of several to work effectively. It also allows leeway for compromise.

1. There could be a request for exemptions. For example, while ‘integration’ is a sought after policy for disabled children, deaf children could be made exempt from this within disability legislation. That, however, would only be a start, for where does that entail children being educated?  That is where sign bilingualism comes into force, since not only does it focus on a child’s individual ability, it requires them spending time together collectively. [As an aside, it doesn’t exclude hearing children, especially those whose parents want them to be bilingual in signing and spoken language.]  But the whole point of this exemption is what it leads to: a preservation, protection and development of the language and culture.

2. Special group representation rights have already been addressed, but these rights do not only refer to having seats in parliament: they may work at a local or departmental level.  Education is again a good example, or within local councils.

3. However, the most crucial form of minority group right would surely be a form of self-government.  I will now spend some time on this part.

Paddy Ladd made the point that Deaf communities need effective and appropriate representation when negotiating with government. This is a case that Grumpy Old Deafies also addresses, where the author cautions that precisely because so many organizations were involved in the BSL recognition process, it harmed the movement the last time round. Different NGO’s and other groups strengthen the case for a BSL Act when they criticize governments for not doing enough to protect sign language, but one would hope that they will not become embroiled in the negotiation process for an Act.  In a sense, therefore, what I write here is an appeal for organizations to step back from being engaged in the nuts and bolts of putting an Act into force.

Organizations: the pitfalls, organizational power, and responsibility

There are two points to be made here about organizations’ involvement in the creation of a BSL Act.  Firstly, many have and will suggest that different Deaf/deaf organizations unite to push and persuade governments to put into effect a BSL Act. There are some attractions to doing so, that is not being denied. Governments, by and large, will find it hard to ignore a strong lobbying group.  Bringing all of these groups together, united over a common cause, strengthens their position. Indeed, Scotland could be held up as an example, where a united group of different organizations, the Cross Party Group on Deafness, have built up a very effective lobbying group, and have successfully managed to persuade Scottish MP’s to bring a BSL Act before the Scottish Parliament.

When I first saw the Act on paper, it seemed pretty strong in many respects, except for the lack of mention of Deaf culture: however, at the time it was disseminated (2010) the wording wasn’t the problem, it was who was pursuing it that was the major contention. As  Maartje Meulder explained at the DCAL/BDA meeting, that Act was already being watered down.  Therefore the same old mistakes are being repeated all over again, and the risk is that it will be largely symbolic and piecemeal in practice, and grassroots activists will, like in 2003, feel betrayed.

The process is highly likely to be repeated if the same process of ‘let’s get all the organizations on board’ is pursued in the UK. There are more powerful charitable organizations when you put the UK together, and a particularly strong parliamentary group through which UKCod is the leading link. Because these organizations have such diverse policies and also represent several different interests, they can have conflicting agendas. To have these organizations involved in negotiations over a BSL Act is therefore dangerous, because those with more cultural capital, and effective networking with politicians, are far more likely to hold the power in the case of putting through a BSL Act. They are also far more willing to allow any Act to be watered down and lacking in a cultural aspect.  [The Scottish Act, incidentally, has zero reference to culture.] And these groups are not all strong supporters of BSL. For example, sign bilingualism, is not universally pursued by the two main organizations that have good access to politicians: the NDCS and AoHL. One group, Deafness Research UK, is committed to eradicating deafness altogether and the myriad conflicting policies of UKCod needs no introduction.[5]

Secondly, comes the question of responsibility. This is directly related to the question: if Deaf organizations are not the ones who should be representatives for a BSL Act, who should? Language minorities such as the Gaelic Board in Scotland, have a group that takes responsibility for putting into practice language and cultural planning. Why not make contact with this group and seek to learn from them?

I will suggest that in the case of the Deaf community this entails establishing a completely new group, what I will term a ‘Sign Language Board’ (SLB), for want of a better term, that is free of party politics, and completely committed to a core set of principles about what a BSL Act would entail. It could have one of two options. The first, most ambitious, would be to aim to take power for itself. The second, would be to bring a diverse range of people together to draw up an Act, and decide which people to recommend to be on any Board to put this into action.

A ‘gentle’ form of power, and being inclusive from inception

I want to be clear here that I do not refer to an oppressive form of ‘power’.  The process of devising or developing the Board should be built on enlightened and democratic principles, one that is not controlling or oppressive, but which is fully inclusive.  Paddy Ladd made the point that there needs to be a vision. Hence it can include input, representation and involvement of hearing parents of deaf children, hearing allies with a positive attitude towards sign language. It should most definitely ensure all sections of the community are included in constructing such a body: Black deaf people, disabled Deaf people, Deaf people with usher, lesbian/gay/bisexual/transgender groups, and ensure there is equal representation of women. This should not be tokenism, but built in from the start, because Deaf communities are not immune from bias.

It could be a ‘gentle’ kind of power, one that is very firm about the centrality of sign language and Deaf culture but also open to learning from one another as it seeks to develop. Such a group can begin planning who they think that Board should consist of now. There is nothing stopping it.  The UK government, just as it funds Wales, Northern Ireland and Scotland, could fund a Sign Language Board, and free up funding for what is necessary to begin a process of community repair and reconstruction.  Deaf people pay their taxes, so this could be a just entitlement.

The biggest obstacles are likely to be (a) securing funding; (b) risk of backlash from other groups who may seek to demand similar rights; (c) the very real risk of a opposition from the powerful, influential and wealthy medical profession; and (d) current organizations working in deaf communities seeking to gatecrash onto the Board via its government networking. [For what it’s worth, I think (a) and (c) and (d) can be rebuffed by strong concerted action from the new group members, while for (b) it may be worth considering a broad based alliance to bring about group rights for different minority groups.]

If the D/deaf organizations are really serious about supporting a BSL Act they will happily and willingly refrain from engagement and allow this development to take place, and positively and openly urge the government (lobby them in fact), to support this Board and the campaign for a BSL Act led by Deaf people and their elected hearing allies. The 2003 recognition campaign showed that NGO’s were happy to put throw themselves into negotiating positions by, for example, attending parliamentary events and putting themselves forward as ‘representatives’; the current generation can learn from the past by putting forward an action plan for self-government.

Summary

Therefore in summary: first, in discussing the practical ways an Act could be developed, collective minority group rights could be a very fruitful part of that discussion. Second, what is being suggested here is not a blueprint, but a basis for discussion of how group rights might be enacted in practice. Third, in considering the politics of this new movement, it should be emphasized that the current set up may not be dismantled overnight, but it should be pointed out that what the Act requires is an intervention – and that what the BSL Act is looking for is a very different kind of intervention, one that is based on natural justice, not ‘free choice’. It consists of a strong confident Board that is not afraid of power and responsibility, but eagerly seeks it.

So there you have it: a reasoning of how a BSL Act could begin to include discussions on a form of collective, cultural group rights. I have suggested a strong form of self-government is key: in fact it has already begun, and takes the form of spit the dummy.

Finally, if the current system cannot, or will not, enable some form of minority cultural group rights, then one has to question whether the system is the problem: after all it is not benign, for it is already propping up an institution that has a normalizing agenda, and is not protecting the community from genetic experimentation.  These interest groups are committed to eradicating deafness [and by implication Deaf people] for good. That cannot be allowed to happen.

*This blog entry is based on research I carried out from October 2008 to October 2010, and is yet unpublished. A draft has been written, but is currently in the process of being re-drafted.

**Originally I used the term ‘Hispanic’ but as members of one of my classes pointed out, the correct term is Latin@

[1] Ladd, P. (2003) Understanding Deaf Culture: In Search of Deafhood, Multilingual Matters: Cleveland.

[2] Click here for the powerpoint presentation Dr Paddy Ladd gave at the WFD Conference in Madrid 2007 [given by kind permission of Paddy]

[3] Thanks are due to the 12 Deaf people who took part in the research project focused on collective group rights (2008-2010); this paragraph is an outline summary of what collective rights might be held in common by Deaf communities.

[4] Mauldin, L. (2011) ‘Parents of deaf children with cochlear implants: a study of technology and community’, in Sociology of Health & Illness Vol XX No. X 2011 ISSN 0141-9889, pp. 1-5

[5] With thanks for Maartje Meulder for information contained here [but do note: I take responsibility for views expressed]