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RNID and Medical Research

Yesterday we received an e mail, around deaf organisatons. The e mail raised two main issues, so we'll split this up into two blog posts. Instead of me rephrasing (which no-one needs), with permission I've copied (part) of the e mail:

I have been a follower of GOD for a few months and just wanted to share my revulsion at the new RNID website.

Right in the middle of the website is a feature about medical research on deaf people. To quote:

“RNID’s biomedical research programme aims to speed up the discovery and development of new drugs and treatments that will benefit people who are deaf, hard of hearing or have tinnitus. So far, we’ve committed more than £6.5 million to hearing research, making us one of the world’s leading medical research charities tackling hearing loss, deafness and tinnitus.
Research proposals are now invited for the following funding schemes:

  • International research grants to support world-class research projects
  • Flexi grant to strengthen the hearing research field through small-scale activities
  • Summer studentships to encourage undergraduate students to enter a career in hearing research"

So... RNID are spending £6.5 million on developing drugs to feed deaf people? Since when are deaf people ill?

Rather than change society attitudes, RNID would prefer to spend money on encouraging more science students to develop careers in developing drugs to feed deaf people. It makes you wonder if RNID are trying to compete with GlaxoSmithKline in new drug development!

But haven’t the RNID missed the point? Feeding deaf people drugs is not a solution to social exclusion or communication. The only way to improve deaf people involvement in society is to empower them to access services and employment in the mainstream.

Ask the Readers:
I've got my own views on this, but I don't want to get in the way of the above comment. What do you as a reader think of the above? Do you agree or disagree? Please use the comment box below.

The Regency: A Deaf Person's View of the RNID
Charity Commission: RNID Income in 2008 (£49,836,000)

Comments (5)

I'm afraid that this is what happens when people who think that they know deafness better than deaf people project their view onto the world - we end up with something that is more medical model than social model.

Imagine that I told women that their view of what it is to be a woman is wrong and I replaced that view with my own version. Then, on top of that, my version was a little insulting.

Well. that's what we have before us here.

I have been lobbying RNID for years asking for a system of consultation so that deaf people can at least have their say, but RNID have resisted even that.

It's all about putting this 'terrible tragedy' picture of deafness about in order to make money. RNID don't care what deaf people think.

It misses the point to say that RNID miss the point.

I don't think they are missing anything, they know damn well what they are doing, and they are impervious to our criticisms. That's the problem.

We need to be taking them to task over what they are doing, and pointing out that they what they are doing.

By saying things like, missing the point, is deflecting legitimate criticism, as it paints the organisations as "ignorant", or operating with the best of intentions, where they are anything but.

I have written a response on my blog, Deaf Organisations & Deaf Empowerment:


Not everyone who is deaf or has lost thier hearing shares your viewpoints. There is nothing wrong in research to find ways to help people get thier hearing back. Millions of people in this country will go deaf and would rather not.

We have to support research, it is the RNID approach and hype that is so damaging, where it denigrates people who are deaf, and then disempowers them, when they should be doing the opposite. They are determined to put no positive spin at all on deaf people's ability, or how they overcome obstacles, even coping with a traumatic hearing loss, is being hyped as something very negative in case this suggests to mainstream we don't want any cures at all or alleviations, then the cash dries up.

Most of us are realistic, we know miracles are a long way off, most do not expect any sort of global 'cure' for deafness. In holding out hope, this drives research onwards, the RNID is just negativity after negativity, and warning the planet "Take care, you will end up like them...." I can only think of one worst thing than that, "Take care you could end up with the RNID view..." It is important to note, the RNID does NO real research, it donates to those that do, then hopes to take the credit for other people's endevour after. The continuing online and media BLITZ by the RNID is a direct threat to deaf people's Independence. Only by maintaining our dependency on the RNID can THEY survive, so it's not in their interests to empower.

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