by In Wales
Wed Oct 6th, 2010 at 06:02:06 AM EST
I attended a meeting yesterday where a presentation was given on the latest research to cure deafness. This is a topic that is obviously very hard for me to be objective about but I immediately have two problems with the way this is framed;
first, it is misleading - all types of deafness can't be 'cured' and secondly, it presents deafness as something that is undesirable, 'diseased' and needing rid of.
Being realistic, I've benefited from biomedical research into deafness. Genetic research identified the cause of my inherited deafness, which isn't just of vague interest or useful at gatherings to waffle about chromosome 8 and how it controls the development of the ears and the kidneys, but it gave me some sort of prognosis. It meant that from 14 years old I was able to grow used to the fact that my hearing was likely to deteriorate significantly (it has) and that I may end up needing a kidney transplant (so far no problems).
Also being realistic, the more we know about how to prevent hearing loss and tinnitus, the more we can do to prevent deafness caused by noise damage and age. I have less of an issue with that, because people who acquire hearing loss with age often find it very hard to adapt to, and become extremely isolated and depressed. It damages quality of life.
Stats tell us one in seven people have hearing loss and this can be as high as 1 in 2 over the age of 60. Given the prevalence, it is true that biomedical research in this area is seriously underfunded.
Unfortunately to seek funding, the 'market value' and moneyspinning ability needs to be sold to the big pharmaceutical companies who have the cash to fund the research. In one sense, this needs to be done in order to gain a position in the scrum for research funding, but it also leads ultimately to the exploitation of vulnerable people who are struggling with hearing loss and willing to pay stupid sums of money for what is being sold as a 'cure'. Many NHS audiology clinics are semi-privatised but frequently people go to wholly private hearing aid providers. Until recently they've been regulated by the Hearing Aid Council but:
The Hearing Aid Council
The Hearing Aid Council is no longer the regulator of the private hearing aid market. The Hearing Aid Council was abolished on 31 July 2010. The register of hearing aid dispensers is now held by the Health Professions Council.
The Health Professions Council is not dedicated to regulating hearing aid providers and given the great raft of cuts coming through there will be much higher priority issues on their agenda. Leading to further exploitation of vulnerable people who are isolated, depressed, not receiving the level of rehabilitation they need through the NHS and living with a condition that is heavily stigmatised...
House of Commons - Health - Written Evidence
The announcement by the Government of its intention to abolish the Hearing Aid Council and the acceptance by Ministers of the need for statutory regulation of clinical physiologists are an opportunity to ensure that all hearing aid audiologists are regulated on a statutory and single basis. Without such change, any re-structuring or re-balancing of the education and training of hearing aid audiologists practicing in the private sector, or any move to increase the provision of audiology services through the private sector (either as private healthcare or NHS care delivered by private providers) will create significant regulatory risk to hearing aid users.
The HAC report on their website outlines how they believe the merger of their functions with other public bodies represents a successful move towards efficiency savings that will also bring about higher quality of service. We'll see.
When we talk about curing deafness, we are working from the medical model of disability - the individual has an impairment and we must seek to fix this problem and make them normal again. Make them fit in with the rest of society.
Deafness continues to be framed as abnormal, diseased, unwanted - a horrible tragic condition afflicting people's lives. People who become deafened can only see themselves within this framing, because everything they come into contact with will be talking about cures and promising a world of happiness and hearing.
The social model of disability seeks solutions that create a more accessible society. But for obvious reasons, the money from big pharma goes into medical research that ultimately aims to fix the 'problem' of the damaged individual.
There are some interesting developments that have identified ways that the hair cells in the cochlear, or neural cells in the auditory nerves become damaged and can potentially be regenerated.
But this whole raft of research and commentary ignores a whole section of society who have been born deaf, and are happy with that as part of their cultural and personal identity. The fact that deaf children are 30% more likely to underachieve in school isn't because they are deaf but because they aren't being taught accessibly. The fact that underemployment is a huge issue for deaf people is again due to poor attitudes, discrimination and lack of accessibility.
But nobody wants to pour millions into creating a more inclusive, fairer society - which ultimately would do far more good for far more people. More money into supporting people to develop the life skills they need to adapt to hearing loss is desperately needed. Deafness instead is stigmatised and framed as problem and money is poured into eradicating it. Like cancer. For me to agree with that kind of framing would be to invalidate my entire existence and all the contributions I've made to society during my life.