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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2 comments

  1. I personally thought that this was incredibly interesting! (That may make me a bit of a nerd too :)) That would be amazing if they could find a way to suppress deafness that is connected with mother genes!

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