The Forgotten People

scketch
Picture is a pencil drawing of man looking worried with hand on head in deep thought.

What is the biggest barrier of deafness? Many people will say it is not being able to hear. You ask the average hearing person and I am betting most will tell you that it’s about not hearing the music, the birds, the lapping of the waves at the beach and so on. The paradox is that missing out on these things is really a minor irritant in the big scheme of things. What deafness does is isolate.

I was reminded of this last week a Let’s Talk About It – Deaf People and Mental Health Conference. The wonderfully articulate keynote speaker, Dr Brendan Monteiro, recounted the experience of his friend who had lost his hearing later in life. His friend was a keen rugby player and quite talented. After losing his hearing he gave up the sport. Obviously Dr Monteiro’s friend did not lose his talent for rugby but once he lost his hearing he no longer enjoyed playing as part of a team. The enjoyment was lost because his friend could no longer enjoy the camaraderie and banter of his team mates. The game of rugby was but a small part of the enjoyment factor – The socialisation was the major part.

This year I have been thinking a lot about people who are later deafened , particularly since a conversation with my wife. My wife and I had been discussing theatre access. She is a keen theatre goer and loves attending interpreted theatre. She also acts as a consultant for Auslan Stage Left to help translate scripts to Auslan. One of the highlights of her life was to be involved with translating Les Miserables to Auslan for the stage.

I asked my wife why they did not provide Auslan and also captions for theatre performances. I reasoned, given that most people with a hearing loss are later deafened people, captions would actually provide access to more people. She told me that production companies only have a budget for one or another and mostly chose Auslan interpreted performances.

I have no wish to discredit interpreted theatre. It provides great enjoyment for many people who use and prefer Auslan. Arguably more people could get access, including members of the Deaf community who use Auslan, if captioning was the main means of access. Sure there would be some members of the Deaf community for whom captioned English would diminish their access but many are proficient in English and would still get great enjoyment through captioning.

In a prefect world we would provide both interpreted theatre plus captioned theatre but it is not a perfect world. Production companies have limited budgets so they must chose one or the other. I find it strange that they chose Auslan mainly, thus rendering their productions inaccessible to the MAJORITY of people with a hearing loss.

It seems to me that later deafened people are almost the forgotten people. Indeed I think we are at a point where MOST deaf people today are more proficient in English and can get better access with captioning. Most kids today who are coming into the Deaf community have cochlear implants. Many of these kids do not get access to sign language until they are in their late teens. Even though many of these kids with cochlear implants find themselves very isolated in the hearing community, they have better English skills than kids in the 70s, 80s and 90s who predominantly used hearing aids. In my view this has been one of the great successes of implants. Yet still there is little focus on how captioning can provide access to society, particularly medical situations.

I would much prefer that all kids with a cochlear implant get access to Auslan, but sadly this is not happening. We know that many of these young kids seek out the Deaf community later in life because socialising in the hearing community is still very isolating. Nevertheless, their first language is English but they are still getting minimal access to captioning.

Even at the Deaf People and Mental Health Conference the bulk of discussions centered on the provision of sign language interpreting and culturally appropriate environments for Deaf people trying to access the mental health system. Who is advocating for people who are deaf whose primary language is English. Who is advocating for those that can hear OK only in places where the background is quiet, which certainly is not a busy hospital. Who is advocating for those people with a hearing loss who don’t and will never sign and need emergency medical and mental health intervention?

Yet later deafened people, and even young people with cochlear implants who do not sign, have mental health issues. Consider these quotes:

a study of 2,300 hearing impaired adults age 50 and older found that those with untreated hearing loss were more likely to report depression, anxiety, and paranoia and were less likely to participate in organized social activities … Source – http://www.audiology.org/publications-resources/document-library/untreated-hearing-loss-linked-depression-social-isolation

This sense of isolation can lead to depression, poor self-esteem, self-pity, feeling disconnected from or the actual loss of relationships, and loss of love….  Source: http://www.hearingloss.org/sites/default/files/docs/Kooser_Connection_or_Isolation.pdf

The person decides to withdraw from social events, or if they do attend, they withdraw from conversations or interactions. When the latter happens, the person with the hearing loss is seen as not interested or may seem depressed because of their lack of communication ….. Source: http://www.soundworldsolutions.com/blog/social-isolation-due-to-hearing-loss 

Difficulties of young CI users to understand people in noisy environments, such as schools, may induce social isolation and mental health problems, particularly peer problems, in the long term….. Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4502340/

Very clearly the social isolation caused by hearing loss can lead to significant mental health issues. YET, particularly in Australia, most focus on the provision of support and access to medical or mental health support has a focus on people who are deaf who use Auslan as their preferred language.

I have no wish for the emphasis on Auslan and support through Auslan to decrease, in fact it must continue to increase. BUT – there are clearly a significant number, a majority of people, in our society who have a hearing loss and who are at risk in medical and mental health scenarios who do not sign. Who is looking out for them? Live captioning for counselling and medical emergencies – has it been suggested? Is it being trialed? Or are hearing aids, cochlear implants and assistive listening devices expected to solve the issue?

So what are we doing? – Are these the forgotten people?

For more on this issue read:

https://therebuttal2.com/2015/04/22/where-is-the-voice-for-captioning-and-not-just-the-movies/

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One thought on “The Forgotten People

  1. Gary, I found this enlightening. Thanks.

    It may sound trivial to some, but I’ve been having a challenge with hearing loss as I grow older (I’m now 70), primarily from constant excesses of ear wax. In the past I would become gradually aware that my hearing was deteriorating, then go to the doctor and have my ears syringed.

    In the past couple of years I’ve found it almost impossible to get any GP to undertake this procedure. In the past 6 months it’s reached the stage where my hearing loss in one ear is essentially 100% and becoming more severe in the other.

    There is such a reluctance amongst doctors I’ve visited that it struck me forcefully a few weeks ago that they were actually afraid to do it — and I suspect that their medical indemnity insurers have decided not to cover this procedure.

    But that’s not my major concern. What this article rammed home to me was the isolation that hearing loss can cause. My wife returned last week from five weeks visiting our youngest daughter in Perth. During the time she was away, I discovered that I was basically a hermit, out of contact with the rest of the world, including family.

    When I could hear the landline phone ringing — usually just in time to miss the call and then have to struggle to understand the voicemail messages (thank heaven for automatic call back dialling!) — only to face a dialogue with (mostly) family members in which I had to repeatedly request them to speak up or to “say that last part again, please”.

    I was shocked to realise that, by the time my wife returned, I was dreading phone calls, none of the television sets could be turned up any louder and I just preferred staying home because even basic shopping was becoming a nightmare for me.

    Now my dread is those days when a warm day is followed by a cold snap and my feral wax glands go into overdrive, making the hearing loss even worse.

    Not sure what the long-term solution is going to be.

    But I certainly appreciated this article. Definitely a timely wake-up call.

    Thanks!

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