Australia’s Disability Discrimination law is an ass. Here is why.

Prior and Nojin are disabled men who were employed by one of Australia’s many Disability Employment Enterprises known as Australian Disability Enterprises. (ADE) They took their employer to court. They argued that under the DDA paying them less than $4 was discriminatory. From what I can gather they began their case in 2011 and their arguments were rejected on a number of occasions. They appealed and it was not until January 2013 that the court ruled in their favour.

The court ruled that the notorious Business Service Wages Assessment  Tool (BSWAT) discriminated against people with a disability. The court  ruled that workers with a disability should receive equal pay for equal work. Just like women!

Now it has been a long drawn out battle, but finally at the tail end of 2015, entering into 2016, an agreement has been reached to pay workers with a disability a fair wage. On top of that the agreement states that workers will receive 70% reimbursement by means of back-pay. The ADEs wont pay though because the Government will put forward the money. One would hope that from here on ADEs will pay people with a disability a fair wage. This remains to be seen.

Four years on from the original ruling, workers with a disability at ADEs had a win. This was not before the whole matter was dragged through the courts and at great expense and heartache. Where in all this were the rights of people with a disability protected? Well, eventually it seems the they were. That said, we are still no closer to having a commitment to equal pay for equal work. From my point of view workers at ADEs are still open to being discriminated against by ADEs. It should be simple shouldn’t it. Like fair pay for women it should be fair pay for people with a disability. Is it any wonder 45% of people with a disability live in poverty.

Recently I have had my own experience of the DDA. I made a complaint for disability discrimination. I was very fortunate to actually reach conciliation. You see when people with a disability make a complaint for disability discrimination the offending party is under no obligation to come to the table. They can say no. In such cases the only other avenue to have the matter heard is the courts, and at great expense.

But I got lucky and the offending party came to the table. Now I have to be careful here. You see conciliation is strictly confidential. What happens in the room stays in the room. So I cant say who or what the offending organisation do, did or agreed to do. So let’s just call this a fictional case based on a true story.

What it came down to was that I owed money. The reason I owed this money was due to some exceptional circumstances. In my efforts to receive a fair hearing from this organisation I encountered barrier after barrier. Let us just say the organisations communication systems were less than desirable for people who had different communication needs.

Over a period of time I tried to deal with this system. I requested and was refused reasonable adjustments by way of an Auslan interpreter. Consequently the matters escalated to court. The money owed was in the thousands. It need not have been so if communication had been smooth and if systems had been designed with the needs of various communication scenarios in mind. Also, if an Auslan interpreter had been provided much confusion could have been avoided.

After dealing with them for several months and getting nowhere I made my DDA complaint. Conciliation occurred. The organisation admitted that its systems caused difficulties. They admitted that as the result of my case they had already implemented a number of changes to make that system better. They were committed to continual improvement. As for the money owed they refused to budge on that.

They agreed to a number of other strategies too. For example they agreed to make their workforce more responsive to the needs of people with different communication needs through training. It all seemed positive. They were admitting liability for some of the problems at least and they were making positive change to address the deficiencies.

I asked if they could confirm this in writing for my court case.  I felt that this would be looked on favourably by the courts. They refused. I asked if I could at least mention what was agreed in court to bolster my defense. They refused that too. You see, under the law all matters discussed in conciliation are confidential. They cannot be disclosed, not even in a court of law in ones defense.

So here we have a scenario that an organisation has admitted its systems caused problems that led to matters becoming worse. We have them admitting that as a result of my case they had already implemented some positive change. We have  them committing to continued improvements including skilling staff to deal with the needs of people with different communication needs.

All good except that I cannot use any of this in court in my defense. I cannot disclose to the judge the outcome. So I am left lumbered with the payments and no means to defend myself.  I am sorry but is not the whole idea of disability discrimination law to protect people with a disability? It seems not. I am confused.

As Mr Bumble said in Oliver Twist, “If the law supposes that, then the law is an ass an idiot.”

Merry Xmas everyone!

2015 has not been a pleasant year. Extremism has reigned. At the start of the year we had a mad gunman hold people hostage in the Lindt Cafe in Sydney. Sadly hostages died as the gunman was apprehended, apparently from friendly fire. We have had ISIS in the headlines every day. Last Month ISIS extremist carried out a series of attacks in Europe, notably in Paris, killing hundreds. The common denominator in both these examples is that the crimes were committed by Islamic extremist.

The funny thing about extremism is that it brings out extremism in others. As ISIS carried out its terrible crimes xenophobic extremist fell over themselves to blame all Muslims. Tony Abbott didn’t miss a beat, fear mongering against and chastening Islamic people at every turn. Donald Trump in the United States has called for Muslims in the country to carry identity and others to be banned from entering the the United States.

Closer to home we have had the exceedingly embarrassing Reclaim Australia Rallies where fanatical Australian’s were telling all and sundry that if they wanted to live here that they had to be like Australians. The reality is that they were telling people of Islamic faith to get out of the country. And anyway if that is what being Australian means, they can shove it some place where the sun don’t shine.

It shits me. There is no other word I can use. What is it about some humans that makes them think that they are superior? What is it about nations that makes them think that their way of life is superior to other nations? When did we become so arrogant that we decided that our own way of life was the only way and everyone had to live that way or fuck off? It is appalling.

And Christians? Were they not those wonderful people that gave rise to the Crusades that killed millions. Christians that gave rise to the Klu Klux Klan who use Christianity to justify White Supremism and lynchings of African Americans. Christians who gave rise to the Westbro Baptist church and its warped views and actions against Gay, Lesbian, Bisexual and Transgender people. Christians who cover up sexual abuse in the Catholic church so much that an ex-Prime Minister refused to condemn a Cardinal that had been central to the cover-up. When did we become so holier than though? People in glass houses should not throw stones as they say. (And please Atheist, do not come on here and say it is all the fault of religion. For all its extremism there is much to admire about the values that of love, acceptance and support that are central to most religions.)

But I am tired of the negativity. I am tired of the racism. I am tired of the intolerance. Mostly I am tired that we give so much attention to arseholes. It’s Christmas soon so let us end the year on a positive and look at some of the great things that have happened this year.

1. Young Australian of the Year is Deaf – We have to celebrate this because Drisana Levitzke – Gray has been an absolute ray of sunshine. At just 21 years of age she has carried the Deaf community this year. Did you  see her performance on Kochie’s Angels? How did someone so young get so much wisdom. She was talking about domestic violence and the need for specialist and culturally appropriate services for domestic violence victims of the Deaf community. We are very lucky to have such a young, intelligent and passionate person to be leading the way for the future of the Deaf community.
2. Deaf Nyle DiMarcio wins America’s Top Model – I have to admit I was a bit skeptical about this one. But like Drisana Nyle has used his success to advocaate for the needs of the Deaf community at every turn. The coverage and attention he has brought to the needs of the Deaf community has been matched only by our own Drisana. How down to earth was he? Said Nyle, ” I just want to say that you are complaining about your hair. Do you see me complaining about my deafness? No I am not. I feel like you guys are complaining about something so simple.”  
3. Jamie Brewer becomes the first model with Down Syndrome to model on the prestigious New York Fashion Week.  She apparently stole the show. Said Jamie, ” Young girls and even young women see me and say, HEY, if she can do it so can I!”
4. Alastair McEwin becomes Chair of the Disability Council NSW. It couldn’t have happened to a nicer man and the fact that he is deaf is the cherry on the top. Alastair and I go back a long way. I’m gonna take some of the credit cos I interviewed him and sent him to an Australian Association of the Deaf Youth Camp way back in 94 or 95. He hasn’t looked back since. Good on you Alastair! Just another example of Deaf people making it to the very top.
5. Let’s Talk About It – Deaf People and Mental Health Conference – I have to mention this one. With my partner in crime, Melissa Coe, I wrote the submission that secured the funding for this conference. Why is this notable? Well because it was organised by Deaf people for Deaf people. From top to bottom the conference was organised entirely by Deaf people and the stars of the conference were the Deaf people themselves who shared their very personal and harrowing stories. Through their courage we sowed the seeds to create a better mental health support system for Deaf people. The conference was from the grassroots up, deaf people taking control and this is how it should be. It was attended by Deaf people and hearing people alike from all over Australia! Without doubt one of the proudest moments of my career. Who can ever forget that Poem by Kate Frost that debuted at the conference? It has gone viral. Watch it again below.

There is so much to celebrate yet we hear so very little of it. I want to end this year on a high and I want 2o16 to start and finish that way. Let us no longer give a voice to the negative extremist from both sides. It is time for humanity to take control. We can do that with simple random acts of kindness – to ourselves and others.

So have a happy Xmas everyone. Even if you are Muslim, Jewish, Buddhist or an Atheist come join us in celebrating Xmas. If any non Christians out there would like to invite me or others to join them in their own religious ceremonies, I would be very honoured. A little bit of respect can go along way!

Here is to 2016 – A better and brighter year. What better way to start it than with the Australian Deaf Games!

So by way of a Christmas Card I present you all with this video – Just Random Acts of Kindness – Try it sometime!

As the prime author and editor of The Rebuttal I often get approached to write things, usually critical things. The people that approach me range from CEOs of deaf organisations, Deaf and disability advocates, teachers of the deaf or simply individuals that feel strongly about something. They ask me to write about organisations, about services, interpreting, caption cinema, Deaf education and the like. Sometimes they ask me for help to write an article because they are not confident in their writing and I am usually happy to help. However, sometimes they ask me to write because they do not want to cop the bullets themselves, they would rather I cop them. This is where I draw the line.

I have been stewing about writing this article for sometime. I have decided to put these thoughts to paper because what follows is a story of success and it is a lesson to us all.

In November last year three people from around Australia contacted me. They wanted me to write something in the Rebuttal about the nomination for Young Australian of The Year, Drisana Levitzke-Gray. I don’t know Ms Levitzke-Gray personally. Ms Levitzke-Gray comes from a Deaf family that goes back many generations. I have had the pleasure of meeting several members of Ms Levitzke-Gray’s family over the years. They are a strong Deaf family who advocate passionately for Deaf rights. It is no surprise that Ms Levitzke-Gray is following in their footsteps.

The three people that contacted me wanted me to write something along the lines that Ms Levitzke-Gray was not deserving of her nomination for Young Australian of the Year. The gist of their argument was that she had not done enough and that there were others that were more deserving. They wanted to feed me information to write an article that would paint Ms Levitzke- Gray’s nomination in a negative light.

I refused. I simply told these people that if they felt strongly enough about the issue then they should write it themselves. I urged caution, however. I said that what they were suggesting would look like sour grapes and would most likely backfire. Mostly I urged them to think of the positive publicity that would be created as the result of Ms Levitzke-Gray’s nomination. Thankfully nothing was written and Ms Levitzke-Gray made history by becoming the first ever Deaf person to win the Young Australian of the Year award. What an enormous success she has made of it.

The sad thing is that even after Ms Levitzke-Gray had won the Young Australian of the Year Award the muttering in the background continued.  The Deaf community is small and I am pretty sure that much of the negative talk would have got back to Ms Levitzke-Gray. She did what all great people do, she ignored the naysayers and simply got on with the job. I have to say Ms Levitzke-Gray has been the best thing to happen for the Deaf community for many years.

First and foremost Ms Levitzke Gray has used her success to promote the rights of the Deaf community at every turn. She has been particularly vocal about the need to officially recognise Auslan. Wherever she goes she is at ease, confident, with beaming smile and exceedingly articulate. She has the knack of being able to make the complex simple. Her passion shines through.

Ms Levitzke-Gray has been everywhere. She has met Prime Ministers and opposition leaders, royalty and politicians. She has met celebrities and every day people. Everywhere she goes she speaks passionately about the Deaf community, Auslan and the right for people who are Deaf to be able to access every facet of Australian life. She has become a media personality and when she talks, people listen.

Recently she was  photographed with Prime Minister, Malcolm Turnbull. Perhaps for the first time ever a Prime Minister has officially supported Auslan because of that meeting. In fact he officially commented on his Facebook Page. See what he had to say here – Malcolm Turnbull Facebook

I just want to publicly thank Ms Levitzke-Gray for all the work that she has done for us this year. She has been tireless in her endeavors and never missed a beat to put the needs of the Deaf community, particularly Auslan, out there in the public domain. She has been an absolute breath of fresh air from the dowdy and boring old farts, including me, that have been advocating for the Deaf community all these years.

Well done and thank you Drisana, you are a credit to yourself and your family. As for the doubters and naysayers, well she certainly showed you, DIDN’T SHE???

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!!!

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/

Of 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 

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

Fifteen years of love and devotion were over in just a moment. Tramp had cancer in his stomach and was bleeding into his bowel. All of us except Finlay, who was working, surrounded him and hugged him. As one we cried. My wife held his head and looked into his eyes to reassure him. She wanted her face to be the last thing he saw. He was her special friend. The vet cried with us as he administered the lethal injection. In just a moment Tramp was gone. His soul departed, leaving just the shell that had served as his body for 15 years.

But life goes on. I awoke the next day and immediately had to attend a fundraising sausage sizzle at Bunnings. My grief was still raw. I cried as I drove to do do my duty. My youngest son was with me. He and I took time to have breakfast together. Unsurprisingly, given the events of the previous day, the topic of our conversation was death, and in particular euthanasia.

My son, who is 14, is pro-euthanasia. He confessed he did not understand how we found it ok to put animals out of their suffering yet kept humans living in pain. It was my son’s view that if a human was in a great deal of pain and was suffering they should be able to die if they so chose.

I challenged his view. I wanted to ensure that he considered the issue from different perspectives. I pointed out that allowing euthanasia had many legal dilemmas that were hard to resolve. For example, I argued, there are people that think that if some one is severely disabled they should be allowed to die, or that parents should be allowed to decide if their new born with a disability should receive treatment at birth that might save the child’s life.

He was adamant that this should not happen. He strongly believed that all people with a disability should be able to live. I pointed out to him that there might be some people that actually feel that a disability causes too much pain and, therefore, that people with a disability should be able to die. I pointed out that there are actually some people that want to eradicate disability all together. The gist of my message was that before euthanasia could really be legal there were many moral dilemmas that needed to be considered. I can only hope our little discussion assisted him to consider the many different perspectives relating to euthanasia.

There are some academics that argue that the state of disability is a lesser state of living. Chief among this brigade is Peter Singer. Singer thinks that disability is a misfortune. Indeed in a paper he has written titled, Ethics and Disability, he repeatedly makes this point. On deafness  he states, “And certainly most people all over the world—not just bioethicists—believe that to be un- able to hear is a misfortune..” He makes this point while acknowledging that the Deaf community are unlikely to hold this view.

On disability in general he states, ” I would argue only that, other things being equal, being able to walk, to move one’s arms, to hear, to see, to recognize other people and communicate with them, are advantages.” He says this while arguing that disability may sometimes be advantageous. Such as in times of war because people with a disability don’t have to put themselves in the firing line. (Yes, he actually argued this!)

But make no mistake Singer, and people of his ilk, believe that disability is a lesser state of being. They believe that parents should have the right to choose to abort a fetus that is confirmed to have a disability. They try to soften this view by saying it is a matter of choice. By this they mean that it is perfectly alright for parents to decide to take a fetus to full term knowing it has a disability if they so choose.

However, they also feel that parents should have the right to abort a fetus that is confirmed as having a disability. Singer encourages parents who know that their unborn child has a disability to talk with disability groups before making a decision. He believes it should be an informed decision, BUT – If the parents still decide to abort the fetus before it goes to full term, because it has a disability, then Singer considers this perfectly acceptable.

I find the idea of aborting a fetus because it has a disability very sad. My values do not allow me to accept that a person with a disability has less of a right to live than a person without a disability. My view is that no one should be able to judge the value of life based on an assumption that not having a disability is of more value than having a disability. That’s my strong view but not everyone thinks that way. Singer’s views are controversial but make no mistake there are many, many everyday and perfectly nice people that feel as he does.

Indeed Gillian Triggs, the current Human Rights Commissioner, gave birth to a severely disabled child. At birth the doctor advised her to just let the child die. Triggs agreed with the doctor and provided consent for her child to not receive treatment to save its life. But the child did not die. It lived for 21 years. Triggs gave her child up for adoption. She was forever thankful for the family that cared for her child. I wrote about Triggs dilemma in an earlier Rebuttal. Click HERE to revisit this article.

I do not want to be critical of Triggs. It was her first experience of disability and the EXPERT doctor had advised her that her child would be better off dead. How does one react to this having just given birth?  It must have been horrific. Nevertheless, it clearly shows that our society values people with a disability much less than the non- disabled. Singer puts forward an argument that people with severe disabilities take away resources from the health care system that could be better used to save lives of people who, presumably, have more of a right to live than others. I find such a view totally offensive but Singer is supported by more people than we care to admit.

Death really is natures own natural “de-populator“. Arguably death is actually essential and healthy for all species. If nothing died and only bred, there would be no room left on earth. Humans think nothing of culling animals in the wild if they feel there are too many of them. Humans will argue that by culling animals that they are reducing demands on food sources and thus contributing to the survival of a species as a whole. Humans will think nothing of killing several thousand koalas to ensure that they don’t eat themselves out of their habitat.

Yet humans cannot relate this concept of “culling” to themselves. As a species Humans put more demands on the environment than any other. They do more damage to the environment than any other species. Humans with the unquenchable thirst to live forever put themselves at risk and other species as well.  Despite this humans continue to research how they can live longer and they are succeeding. It is a paradox that by living longer human’s are probably  hastening their eventual demise.

No one wants to say it but probably of all species that need to die a bit quicker it is us humans. In Japan a Government minister upset people by suggesting that elderly people should be left, “.. to hurry up and die.”  He argues that by hastening the death of the elderly then less stress is placed on the state to maintain them.

There is an argument that might say that instead of saving lives we should just allow death to happen naturally. In this way the species as a whole, and other species too, can survive longer through placing less stress on the resources of the earth. Deep down we know it’s true but I cannot see too many people volunteering to die without a fight. The instinct for survival in humans is way too strong.

There is a wicked piece of satire in the satirical news site, The Onion.  This piece suggests that one third of the worlds population needs to die so as to not destroy the Earth. Says the author, “…humankind needs to figure out immediately how it wants to go about killing off more than 2 billion members of its species.” because, “Humanity has far exceeded its sustainable population size, so either one in three humans can choose how they want to die themselves, or there can be some sort of government-mandated liquidation program—but either way, people have to start dying.”

Of course this is purely satire but if we are honest we know this is not far from the truth. In the past death through disease and war has had a natural way of culling the human population. Be it the Bubonic Plague, Smallpox, the Spanish Flu or the great wars, death had a natural way to cull the human population. But technology and science has interfered with this natural process and by living we, ironically, might be actually killing ourselves more quickly.

Death? We need it far more than we care to admit!

I awoke to the buzzing of my phone under my pillow. I was drowzy and chose to ignore it, flu tablets will do that to you. The buzzing was incessant and eventually I checked my phone to see what was up. It was my friend at the psych ward. My friends anxiety was extreme. Rapid fire texts virtually every ten seconds were coming my way. There was even a photo of a bald man. He had olive skin and was short and squat. He was standing at the door, feet slightly apart and arms folded. He was apparently the lead psychiatrist.

The psychiatrist and his team had arrived at my friends room to discuss her care. The promised interpreter was not there. My friend was livid in her anxiety. The texts did not stop:

” They are here there is no interpreter, they promised!”

” They are trying to write me notes I wont read them, I am tired, it’s not fair”

” Eight hours yesterday I wrote notes with them over and over. I am exhausted, no more!!”

“They  are rude. Bad body language.Won’t listen to me. I want them out!!!”

They had apparently provided my friend with written notes which were promptly screwed up and thrown across the room. I sent my friend a text to show the doctors. The text simply said that my friend had appointed me as advocate and that I would be there later this afternoon.  I stated that I would be happy to meet them. I am not sure what happened from there but the doctors seem to have decided that agitating my friend further was pointless and they left. I told my friend I would be there in the afternoon and implored my friend to cooperate as much as possible, at least until I got there.

I arrived about 1 pm and spent an hour talking to my friend. My advice was quite simple. I advised that it was possible that they had tried to get an interpreter but no one was available. Indeed my friend showed me one of the notes from  the doctor that she had thrown in the corner. The doctor had been trying to inform my friend that an interpreter was not available, that they were trying to organise one and that they would come back later when they had more information.

It seems that an earlier booking  had been made but had been cancelled. Why or by whom was not clear. I advised my friend that cooperation was essential as this would expedite treatment and allow support to be put in place. In  the meantime I promised to meet with the doctor and try to get to the bottom of what was happening. There was grudging acceptance and agreement from my friend to cooperate with the treatment team. In the meantime I would attempt to make some sense of everything.

After meeting with my friend I sought out a nurse. I explained who I was and she was clearly aware that I may show up. She hurried to get the psychiatric registrar to meet with me. The registrar met with me straight away. My friend did not want to be part of the meeting. I have to say the registrar was fantastic. He explained that they were trying very hard to find an interpreter. They were putting in requests for bookings but it seemed that no-one was available. I offered to help out and asked if he could find out who they were booking through. He did not know.

We spent over an hour chatting with me. I was able to explain a little bit about deafness and how some people who were born deaf actually had English literacy issues that were not always obvious. I explained how this could impact on their treatment and diagnosis. He was aware of most of the information that I provided him but together we were able to identify some strategies to better assist my friend. One was having an advocate present to help explain some of the more difficult concepts and help my friend to provide more detailed information. He advised that an interpreter had been secured for the following day and I was to attend the meeting as my friends support person.

The meeting the next day was not without its dramas. Unsurprisingly my friend was extremely anxious. The lead psychiatrist was the same guy that had been standing defiantly at her door  with his arms folded. My friend refused to look at him. Asked him to move over and have another of the team lead discussions. After a bit of a battle of wills he did indeed move over and a female led the discussions. My role was just to help with clarification or advise on deaf issues that may be relevant to the situation. By the end of the session the lead psychiatrist had managed to develop a strong rapport with my friend. He even apologised for his behaviour the day before. He admitted that he needed to learn more about his body cues and how a person who is visual might interpret them.

There have been other meetings with the psychiatric team. My wife and I have supported my friend at these meetings. A constant has been that the medical team are consistently frustrated at the inability to confirm interpreters. The team clearly follow the process and but their trust in the system. Somewhere this system breaks down. There is no easy answer to this. Interpreters at short notice are hard to get but certainly we need a system that can respond and communicate what is going on. The medical team were often left in limbo and frustrated. My friend even more so.

Obviously for accurate diagnosis clear communication is essential. For my friend this is an interpreter and a support person. The support person is crucial as it is difficult for the interpreter to step out of their role when misunderstandings might be happening,

In desperation to help my friend I even tried using social media to find interpreters. This is not something I would recommend generally and I certainly wont do it again. The interpreter that is used in a mental health situation must be highly experienced and qualified. Sure I would have ensured that anyone I identified met that criteria and I have the experience to know the who has the experience to meet this criteria. Nevertheless, using social media in situations like this is a risky strategy. It was a case of desperate measures for desperate times. But as I said, I don’t recommend anyone do this and I certainly wont again in the future.

But for many deaf people who may have literacy issues even an interpreter may not be enough. Some people born deaf have gaps in their conceptual development. Even though they may have strong Auslan skills they still sometimes have gaps in their conceptual development simply because they have not been able to access communication and language easily. In such cases support is needed beyond just an interpreter.

For example, yesterday my wife had to help my friend fill in a 200 question questionnaire that was part of my friends diagnosis and treatment. My friend admitted that many of the questions went straight over her head and would have been left unanswered. Without my wife’s support there is much valuable information that would have been missed.

I have learnt much from this experience. I have learnt that lack of access to communication and support for the deaf mental health patient can actually mean a longer stay in the ward than might otherwise have been necessary. I have learnt, particularly, that the treatment team will go above and beyond to seek advice and act on it. I learnt that the treatment team are hampered by systems. It is not just interpreter availability but the ability of the interpreter booking system that is in place at the hospital to respond quickly and communicate availability of interpreters. This has to change to become more responsive.

Mostly I learnt that when the system breaks down, particularly in a mental health crisis, the stress this causes the patient is immense. In no shape or form should a deaf person who is mentally ill and suffering from extreme anxiety be made to advocate for themselves. Sure some may be able to but many will not.  This highlighted to me that we need specialist mental health services for the deaf that can assist the psychiatric team, not only with advice, but in ensuring that appropriate communication and support strategies are implemented.

Hopefully all of this will be on the table at the Lets talk About – Deaf People and Mental Health conference at Deakin University on the 16th and 17th November, 2015.  Be there, register now by clicking on the link below:

Lets talk About – Deaf People and Mental Health – Register

THIS STORY IS TOLD WITH PERMISSION

It was 3pm in the afternoon when I received the text. I was at home sick with the flu. The text was from my friend who had admitted themself to hospital because they were experiencing a mental health crisis. My friend, who is deaf, was trying to get an interpreter to attend the emergency department. My friend had admitted herself the night before. Apparently multiple attempts had been made to contact the emergency interpreter number that night and these attempts had failed. Eventually, it seems, contact had been made and an interpreter was arranged.

What happened from there is bit vague. Suffice to say that by 3pm the next day my friend was still in emergency.  Consistently my friend had asked when an interpreter would be there so that they could communicate with the doctors and nurses properly. Through writing the emergency staff managed to inform my friend that they had tried to get an interpreter  but it seemed that no one was available. My friend, by this time extremely agitated, refused to believe this. It was my friend’s view that the hospital was lying.

The hospital wanted to move my friend to the psych ward so that proper assistance could be provided. My friend did not want to go until an interpreter was present. Rapid fire texts to me indicated that my friend’s anxiety was rising. Notes had been exchanged with emergency staff by way of communication for nearly 8 hours and my friend was at the point of exhaustion. My friend’s English skills are OK but English is not her strongest language. There was always a possibility that misunderstandings might occur.

My friend was adamant. She did not want go to the ward until she could speak to a doctor with an interpreter present. The hospital were insisting that they had tried but had been told that none were available. My friend was in an agitated state and really in no state to see reason or to be able to advocate for herself. Meanwhile I am receiving rapid fire texts pleading with me to help. My friend was of the view that the hospital were trying to lock her up. In desperation I typed out a text and told my friend to show it to a doctor or nurse. The message simply said that my friend had asked me to advocate on her behalf. I advised against commencing any treatment or medication until an interpreter was present as it was possible that misunderstandings could occur. I provided my SMS number and encouraged the emergency staff to text me for assistance.

After sending this text I contacted a very close friend who is a very skilled and experienced interpreter. She also has had experience interpreting in mental health situations. I asked my friend if she was available at any time that afternoon or evening. She said that she could be available from 7pm onwards. I asked her to lock it in and told her I would then attempt to get her booked officially through an agency. Using my contacts I managed to make an agency aware that a booking might be forthcoming. I told them my interpreter friend was available from 7pm onwards. This was tentatively booked in.

After making these arrangements I was surprised that the emergency nurse actually did text me seeking advice. They were getting very frustrated because they could not get my friend to agree to move to the ward and were asking me for assistance to convince my friend to move. I notified the nurse that I had managed to get an interpreter on standby and that the interpreter was available from 7pm onwards. I provided the nurse with the number of the agency so that they could officially book the interpreter. It was particularly important that an official booking be made so as to protect everyone from any possible legal ramifications. Mental health cases are not to be trifled with. It is important to get a very experienced and qualified interpreter involved and have this interpreter booked properly, particularly for insurance reasons.

The nurse assured me she would make sure the booking happened. I asked the nurse if she could get wifi to my friend’s iPad so that I could speak with her via Skype using Auslan. The nurse was wonderful and actually got this set up. Unfortunately the wifi was not of sufficient quality. I suspect that Skype may have been firewalled by the hospital. In the meantime I was sending texts to my friend to let her know what was happening and gently persuading my friend to move to the ward. I promised that I would continue to work on the interpreter issue.

Eventually my friend agreed, reluctantly, to move to the ward. True to her word the emergency nurse followed through and booked the interpreter using the contact that I had provided her. Knowing that an interpreter would be present from 7pm onwards convinced my friend to cooperate. The interpreter arrived close to 7.30pm and through the interpreter the Doctors explained to my friend that a consulting psychiatrist would meet with them the next day and that an interpreter had been booked for that session.

From there things calmed down. That was until the next day. The psychiatrist and his team arrived for the meeting and there was no interpreter …. What happened from there will be told in part two …..

There are many gaps in our current Mental Health System. There are also positives as can be seen from the way that the emergency department personnel were willing to both seek and act on advice.

If you find this story fascinating or concerning you may want to consider attending  the Lets Talk About  – Deaf People and Mental Health Conference on the 16th and 17th of November, 2015. For more information click on the link below.

LETS TALK ABOUT – DEAF PEOPLE AND MENTAL HEALTH CONFERENCE

# Please note my friend has given full consent for me to tell this story.