Hey!- Who.. Umm … Is it you?????

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Image description … a baby, about 18 months old, in Pjs scratching its head in confusion.

This will be a very short Rebuttal. Many of you will know that last year the Government kind of defunded Deaf Australia and Deafness Forum. Then they kind of refunded them in a roundabout way. Almost a year ago the Government announced that they had funded a consortium under People with Disabilities Australia (PWDA).  PWDA were to represent a number of disability groups including deafness it seemed.

Naturally Deaf Australia and Deafness Forum were up in arms at being defunded. They did not have a lot of faith that PWDA could meet the needs of the Deaf and hard of hearing populace. A little bit later, in its wisdom, the Government decided to provide the Australian Federation of Disability Organisations (AFDO) with 600 grand to represent a further 10 disability groups. Among them were Deaf Australia and Deafness Forum Australia.

So one assumes that when this happened PWDA were no longer representing the Deaf and hard of hearing populace and this was now the responsibility of AFDO. One assumes that AFDO would now represent the people who are Deaf and hard of hearing through  Deaf Australia and Deafness Forum. That’s my take on it any way. But you see I really would not know because there seems to be very little communication happening. I am just totally confused about who is representing who.

Now last week we had the wonderful success of the Let’s Talk About It – Deaf People and Mental Health Conference. It is not well known, but this conference had its seeds in the passion of a few people who had an interest in and lived experience of mental health. As it so happened these people became aware of funds available for a conference. To make it happen they needed an incorporated organisation to lead it. Deaf Victoria came on board to be that organisation and then led the planning and nitty gritty of the conference admirably from there on.

SO!! The conference happened. It was attended by people from all over Australia. BUT, as far as I can remember, there was no representative from PWDA. There was no representative from AFDO. There was no representative from Deaf Australia. Pleasingly, Deafness Forum were represented by the tireless David Brady. ( If any of the above mentioned were actually there, I apologise.)

We needed them to take the issues raised at the conference to the very top. Since the conference Deaf Australia have taken a keen interest in the issue of mental health and are keen to work with Deaf Victoria to get a consistent national message out across Australia about the important issue of specialist mental health support for people who are Deaf or hard of hearing. This is great news. As is the push from Deafness Forum to establish deafness among the top ten health priorities in Australia. But where do PWDA and AFDO fit in? It’s these organisations that control the bulk of the funds, but we have not heard a peek from them on the issues of Deaf and hard of hearing.

At the moment there are important Government policy changes happening. One is the Willing to Work consultation that is looking at the effectiveness of the Disability Employment Service. It is consulting widely with the disability sector. Feedback from this consultation will guide the Government of its strategy and policy in regard to disability employment.Who is representing us?

Another important policy push is in mental health. Federal health Minister, Susan Ley, is currently doing the rounds explaining how the Government is keen to develop an individualised approach to mental health support. Part of this change is the development of a one number, digitalised, phone number that will connect people to the services that they need. I am really pleased that the Government is looking to improve mental health support. However, the individualised support and the digitialised phone number suggests to me that they are not really considering some of the specialist needs of the Deaf and hard of hearing sector or indeed the disability community.

SO!!! – Who is representing us?? Is it AFDO who lead the consortium of ten that Deaf Australia and Deafness Forum are part of?  Is it PWDA who are supposed to represent all disability groups? Is it Deaf Australia and Deafness Forum, with approval from the AFDO bosses?  I have no idea. Do you?

All of these organisations have clout. All of them have knowledge. All of them have fine advocates within their ranks – But WHO is representing us? Hopefully, soon, we can make sense of the maze that the Government has created because quite frankly, at this point in time, I have no idea whats going on.  A year on since the Government announced the changes to funding disability advocacy groups you would think it would be a bit more clear.

Can someone please let us know!!!

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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/

Life

lifeOf life Eminem said, “The truth is you don’t know what is going to happen tomorrow. Life is a crazy ride, nothing is guaranteed.”  This week I have been very much reminded of this.

This week I attended the Let’s Talk About it – Deaf People and Mental Health Conference. It was a conference that I had been involved in organising from the very start. With my my friend and fellow deaf professional from Deaf Victoria, Melissa Coe, I was involved in drafting the successful submission for funding. Over the next 9 months I was involved with four other deaf colleagues, professionals and people with a lived experience of mental health, to organise the conference. Finally the day of the conference dawned.

I have been involved heavily with the Deaf Community since I was 18 years old. In those years I have met so many wonderful people. I have met them socially and through my work as a deaf professional. As people arrived to register for the conference I greeted old friends with a hug. Some of the people attending were old romantic attachments, some were people I had played sport with, some were professional colleagues and some were people I has assisted in one way or another throughout my long career. And then there were the interpreters, the captioners who I know personally and have befriended through my work. And lets not forget the parents of deaf children who I have assisted over the years. As I scanned the room it struck me that a large part of my life was standing right before me.

I noticed my dear friend Deb who I have known since she was 17 years old. With her was Kate, a young deaf woman who I had first met when she was just a baby. I was working as a case manager at the time for what is now known as Deaf Children Australia. I was supporting her family including her sister who is also deaf. These two wonderful women were about to present at the conference. Together they were going to present on their personal experience of domestic violence and the issues of providing support to deaf victims of domestic violence. Life’s journey can be a painful one.

Deb is now in her forties. I first met her when she was 17. Fresh out of school she visited me at the Deaf Society for employment support. She was shy and withdrawn, her mother came with her and virtually answered all the questions. I actually managed to find her a job with the public service where she was to remain for over a decade.

Deb was a talented lifesaver when she was young. Her local club denied her a chance to get her bronze medal because she could not use a walky talky. I was part of  campaign to protest for her. A group of us spent hours creating placards in support of her. We aimed to march at the life saver headquarters with our placards to protest her treatment. All our planning came to nothing because when we arrived the head quarters were closed. We left all the placards on the steps by the front door.

Years later I was to meet Deb again. This time I actually employed her. She was working as a base grade clerk. Like many deaf people with talent she had never been given an opportunity to progress. I encouraged her to take a years leave from her job and come and work for me as part admin and part youth group leader. My boss took some convincing to let me employ her. “What is it you see in her?” he asked me. I told him that I wasn’t sure, it was just a hunch. They do say to trust your instincts.

During her time working under me I became a sort of mentor for her. I introduced her to some basic case management. Gradually I built up a small case load for her. Fast forward another fifteen years and this young lady is no longer young. She is more academically qualified than me and looking to do her Phd.

But her journey there has not been plain sailing. In between she had married and separated.  Her marriage had been an abusive one. Here Deb was about to tell her story of being a victim of domestic violence. She was partnering young Kate who had also been a victim of domestic violence. Deb was supporting and mentoring Kate.

As I said earlier in this piece,  I was the case manager for Kate’s family many years ago when she was just a baby. They are a wonderfully supportive and committed family. All sign fluently and they are passionate in their support for each other. My wife had played netball with her and her sister. Her sister had stayed with us for a year when completing her VCE. Kate had actually stayed with us for a short time in a moment of crisis. She had also become pregnant when her sister was living with us.

Here they were together registering at a conference. Deb was mentoring Kate, just as I had once mentored her. They were presenting together about a very personal and traumatic experience. I just found it amazing that these two women, who I had known in South Australia and Victoria respectively, had some how found each other and were able to offer support to each other through what was a very dark and nasty time in their lives. I felt privileged that I had influenced the life of both these women in some way. Hopefully in a positive way.

At the conference Kate showed a video. It was of a poem that she had written. The poem told the harrowing story of her time experiencing domestic violence. I have posted the video here for all to see. It is a must watch.

On the last day of the conference the organising committee were presented to to the attendees. We were all greeted with a standing ovation of waving hands. As I looked out over the sea of waving applause there were tears in my eyes. Even though life has thrown up a challenge or two I was still standing. From romance, sport, profession, friendship and to family it all stood in that room before me. It was easily the most poignant and proudest moment of my life.

I’ve been lucky, thank you everyone!

I’ve been a puppet, a pauper, a pirate,
A poet, a pawn and a king
I’ve been up and down and over and out
And I know one thing
Each time I find myself flat on my face,
I just pick myself up and get back in the race

Frank Sinatra – That’s Life 

Looking After My Health

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Image is of a hand grenade. Above grenade is a sign that reads … Complaint Department, please take a number.

I am attending a wedding this weekend. Clarko is marrying Liz. I’ve driven a long way with my son Tyler. Probably a tad over 1000 Kms. Marnie, my wife, flew up. Being a teacher she doesn’t have a great deal of flexibility to take time off so we agreed that she should fly in. The moment I arrived I headed straight to the airport to pick her up. From there we went to our hotel. It was a cheap hotel that we booked to save money. We were at reception and Tyler drew my attention to an enormous cockroach scurrying along the floor. In the background a live band blared loudly. Luckily my wife and I are deaf, the band was unlikely to keep us awake. Although Tyler would not have the same luxury.

We got to our room and it was a tiny box like thing. Three single beds were crammed into it. Somehow a table and three chairs also had been forced into the room.  Literally, there was no room to put our bags except at the door. To get in and out of the room we had to tread over the bags. No matter, its a room and all we wanted was to sleep, it had been a long day. I awoke at 3.30 am scratching from multiple mosquito bites. I laughed because, you see, I am determined to complain less.

I have decided I must complain less because officially it is bad for you. Apparently complaining for half an hour everyday is damaging to your health. If you complain or are the subject of a complaint this can apparently lead to neurons being peeled back from your Hippocampus. This causes stress and impacts negatively on a persons ability to function and problem solve. Long term the stress could even lead to earlier death. This is particularly so if you are complaining about the same thing over and over again. Apparently when you complain about the same thing constantly, each time you complain makes you 10 to 12 times more aggravated. Complaining is clearly a bad thing. ( Source: http://www.fastcompany.com/3040672/how-to-be-a-success-at-everything/why-complaining-may-be-dangerous-to-your-health )

Of course there are ways to complain that lessen your stress. Central to this is being able to complain to the source and achieve an effective outcome, which is easier said than done. Nevertheless I am worried. You see, I have built a career on complaining and often to no outcome. Being deaf and a disability advocate means that complaining is central to everything that I do. No captions on TV, complain. No interpreters at the doctor, complain. High unemployment among people with a disability, complain. Lack of access to everything, complain. AGAIN AND AGAIN and often unsuccessfully.

Some people call it advocating but the reality is it is involves complaining. I mean in Australia our whole disability legislation is based on making complaints. If people with a disability are discriminated against the law does not protect them unless they complain. There are no fines or punishment for disability discrimination. Rather, if a person feels that they have been discriminated against they have to lodge a complaint to the Australian Human Rights Commission or their State Equal Opportunity body.

Making an official complaint this way is not a quick fix. It’s a long drawn out process. Often before making a complaint to a Human Rights body a person with a disability may have spent several weeks complaining directly to an organisation. Say, for example, a guy in a wheelchair can’t get into an accessible toilet because it’s used as a store room. He will first complain to the management of the building. He will get a response, either positive or negative. If positive the toilet will be cleaned out of its rubbish and be made accessible. If negative then the next step will be to complain to the Human Rights body and try to have it resolved.  Often times a complaint isn’t resolved this way. Hell, the complainant isn’t even compelled to respond to the complaint. In which case the only other avenue is to take the complaint to court. Stressful much?

Everyday, all over Australia, people with a disability are complaining about the same things over and over simply to live life on equal terms as their non-disabled folk. Either they complain or they put up and shut up. Put up with not being able to work cos we have no access to supports. Put up with not being able to go to the movies cos there are no captions or buildings are not accessible. Put up with being stuck at home because public transport doesn’t cater for wheelchairs. Put up with poverty cos we cant earn a decent living. So they complain again and again about the same old things like a broken record – And yes it’s stressful and tiresome but what other option do they have?

And each time they complain, if the research is to be believed, they get aggravated 10 to 12 times more than the last time. This cannot be good for their blood pressure, nor their ongoing health. SO I have decreed that I will complain less. After a life and career that has dictated that I must complain constantly and often about the same things over and over it’s time to smell the roses.

And smell the roses I must because if the research is to be believed I am heading for an early grave. Politicians will no longer irk me. Bad referees at the football? Pffffffft, who cares. Burnt the toast? Make some more. Boys messed up the house? No matter, my wife is far more scary than me anyway.

Complaining is oft necessary but it is bad for us so I am going to look more on the bright side of life when I can …..

Some things in life are bad
They can really make you mad
Other things just make you swear and curse
When you’re chewing on life’s gristle
Don’t grumble, give a whistle
And this’ll help things turn out for the best…
And…

…always look on the bright side
of life…

Monty Python

Read more: Monty Python – Always Look On The Bright Side Of Life Lyrics | MetroLyrics