Deaf people's rights and deaf community politics

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It’s right to celebrate a groundbreaking medical trial. But what many of us really want is more support for people with hearing loss.

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As someone who has been hard of hearing since I was a teenager, I read with great interest about the case of Opal Sandy – the 18-month-old British toddler who has recently had her hearing “restored” in a pioneering medical trial.

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Opal’s case is something to be celebrated. But it doesn’t have the profound ramifications for all deaf people that some hearing people might assume. It’s important to note that every case is different, and hers is very specific. This treatment is only applicable to a particular and rare type of deafness, meaning that its implications are not as widespread as some headlines might suggest.

But what might worry deaf people more is the discussion around Opal’s treatment. Prof Manohar Bance, the chief investigator for the trial, has used words such as “normal” and “cure”. There has been talk of deaf people being “given hope”. For some in the deaf community, words like these can be insulting. They suggest that people with hearing loss are hopelessly and aimlessly wandering through life, waiting for a magic wand that will cure them. Word choices like this make deaf people feel endangered. They don’t acknowledge that deafness is not a disease or that deaf people are not abnormal – we are most often happy, successful and thriving individuals, and make up a community with a language and culture we’re proud of. None of that needs to be “cured”.

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But the language used to discuss Opal’s case only echoes what we often find in the press and popular culture.

It’s important to be hopeful and to welcome medical advances. But what many deaf people really want is much simpler: it’s funding for BSL classes for parents; it’s a commitment from the government to allocate more resources to those with hearing loss, and it’s visibility in the media and correct representation in culture – and, my personal fantasy, mandatory BSL lessons in all schools. This would encourage a lot more people with hearing loss to engage with their own community, but above all, it would cultivate a greater and more nuanced understanding of hearing loss across the nation. If the hearing world is listening, you’ll find that many deaf people would rather have support than miracle cures.

The issue is one of personal choice.

Some people however want to impose their own demands on others which is wrong.

I've always been critical of those in the ND movement who wish to ban the idea of curing autism and the idea of treating autism.

Likewise claiming everyone with autism should want a cure is also wrong.

If people don't want curing or treating what are they doing getting involved with autism research putting their views in.

They love their autism, they don't want treatment or curing so why are they there?, what have they to offer?.

Their gain is another`s loss - its a zero sum game.

That seems rather inconsistent. If an effective cure is ever developed that that likely would mean that effectively every autistic person will have to deal with it or the consequences of what little support is available evaporating.

I just don't see how curing autism writ large isn't going to wind up becoming a must do, or at least destroy what little support there is for those with fewer support needs. This is as opposed to curing portions of it like not knowing when one is hungry, thirsty or in need of using the restroom. I can't see any particular benefit to any of those things and they don't seem to be particularly essential to the experience of being autistic either.

You have mostly brought up strawman positions in the reply.

There are many mildly effected autistic people on this site who are independent and are self sufficient, i.e work or live without help who probably don't want & could exist ok without a hypothetical cure.

However if people are severely disabled enough to need a lot of support but don't want to be cured of those issues (assuming safe treatment & no side effects here) then that brings up the question of what is it in their personality that they choose to avoid developing into maturity, independence and self sufficiency and the basic question of whether that is a positive thing or not, most people would answer no.

Its not just something that just effects some people with autism but many other types included some NTs

But such a life cannot exist forever anyway, when parents die its the hard reality of a group home or something worse where all sorts of abuses happen.

Its also a big assumption that parents are able and are still around to care for many autistic adults. Many have serious mental / physical health problems themselves, others long split with partners to start new lives not wanting the burden of caring for their adult child from a previous relationship, with others the new partners make it clear they don't want them around.

There is no world in which a cure for autism exists where the people being cured will have any say in the matter. A treatment powerful enough to cure autism is going to be incredibly traumatic for anybody that's old enough to consent to the treatment in the first place. It is highly unlikely that it would be substantively different from what we might colloquially refer to as a psychotic break