I have had this diagnosis since 2003, actually this post was prompted by looking up the difference between a ENT specialist and a Neurotologist - I have been diagnosed on audiology (CNT for loud sounds, as well as word discrimination problems that are.. remarkable). The question I have is why hyperacusis is not listed as a disability/hearing impairment anywhere, in Canada and the US (and England) on Ministries of Health websites, and in point of fact, everyone diagnosed with it is excluded from all disability-related employment programs, let alone accommodation in the workplace. Although hyperacusis is listed by the World Health Organization as a "other hearing impairment" under Audiology (IDE10), it is usually the case that hyperacusis is treated as a psychiatric disorder in that the impact of living with a "physical" disability that no one acknowledges exists as a disability, certainly is depressing and anxiety-producing. Why isn't it listed?
I wanted to be made deaf - looked into it.. surgery isn't covered, and besides, they would never consider coverage for surgery - for a disability that they don't acknowledge exists. Also, from a medical ethics pov, in constellation with the fact that there is little or no education about it, many doctors don't know that it exists, for eg. Ninety-nine percent of people have never heard of it. Our education has never heard of it, with respect to children who have it. Personally, I think that it is very possible that children, within the school systems, are labelled ADHD or.. oppositional defiant, etc., because the school doesn't provide for a hearing test - again, for a hearing disability that they have not been educated to. Who knows? these children may very well be ADHD, for example, but.. everything should be ruled out before they are. I say this because the presentations are so similar - distractability, can't sit still, for a child with hyperacusis, this is simply because everything is too Loud, not because they are ADHD. Children who can be diagnosed as young as.. 5.. ish.. are so treatable. In any case, as it stands right now, unless one is actually looking for it (the word, or know about keyword searches, etc, even online, it's not available information on any medical site (government and otherwise) for children and adults. And I really do believe it should be. It's not right that it isn't.
ps.. what I meant to say about the medical ethics involved, as it stands.. to make someone deaf would be viewed as removing a faculty - like making someone blind - because there is little or no understanding of it - and there are various treatments available for it too - problem is none of them are covered. The prevailing decisions by.. Workmen's Compensation (this ignoring of neurotology and ENT specialists crosses many things..) type bodies.. say that the tests for hyperacusis are not objective tests. I don't know what that means, in truth.. because mine shows up on an audiology test - just a regular standard hearing test..They didn't even bring back for the second part of the test (loud sounds) because of pain response at soft sounds.. Anyway, aren't audiology tests considered objective tests? In terms of being made deaf (and there are times I have prayed for that..), the fact is that, with accommodation (quiet place to work, Cost $0.00, required: employer willingness to do so..), and people who understand its limitations without being pejorative - hyperacusis right now, is at about the same place that dyslexia was.. before it was understood. Before, children with dyslexia were labeled as.. stupid by many, many.. and put in.. opportunity classes for the not to bright. Same with Tourette's.. before it was known, children with it were simply labeled as children with filthy mouths that shouldn't be around other children. Well, there's a lot of research into hyperacusis, so much is known - just in the last 15 years.. and it doesn't take that much and it is not a question of cost - to accommodate .. People are excluded from government employment programs because this disability means that you can't attend classes and understand anything (literally), so.. disability employment programs, currently, exclude disabled people because of a disability and the varying bodies in government (who never communicate) and none of these programs are conducted online - and won't be.. None of this makes any sense to me at _all_ ..
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