Death … A Philosophical Perspective.

deathFifteen 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!

A Work in Progress – Part 2

cropped-Deaf5I 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

A Work in Progress – Part 1

cropped-Deaf5It 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.

Everyday Heroes

heroes
Photo shows a man in a suit, hands on his hip. He is standing with cloudsu in the background. A red cape is flowing out from his back like he is a super hero.

I have had a pretty successful year as an advocate. I have been doing it for a long time so I have got pretty good at it, even if I do say so myself.  But it is interesting that most of my advocacy success happens simply because I need access for me.

Like today. I am fortunate to be attending a conference in Brisbane focusing on Autism. It is a fascinating conference and I am absorbing information like a sponge. For a while it looked like I would not be able to attend.There were no interpreters booked or captioning. The organisers thought that a hearing loop would be suffice. I lobbied to them, with the help of some friends, to get them to provide communication access. Eventually they relented and decided to organise the access.

My reasons for wanting the interpreting and captioning were purely selfish. I wanted to be part of the conference so I lobbied the organisers to get what I wanted. But by getting what I wanted other people benefited, and not just other people who are deaf. For example, did you know that people with autism can actually benefit from captioning?

People with Autism typically exhibit what is known monotropism. Put simply this is the inability to focus on multiple tasks. Monotrpoism can actually be an advantage, particularly with tasks that require intense focus. One of the problems with autism is that many people who have it find it difficult to focus on more than one thing at a time.

Apparently captions can assist people with autism to get a better understanding of what is being said. If the captions provide plenty of descriptions for emotions that are being exhibited and descriptions of sounds, they can actually provide a better understanding for many people with autism than just audio itself.

This is because the people with autism can be really distracted by what is known as white noise. White noise might simply be coughing, pens tapping, papers rattling and so on. Apparently a person with autism studying at university wears headphones in his exams to cut out any background noise that is a distraction. In this way it helps him to focus on his exam.

I am told that people with autism are actually the second biggest market for captioning after people who are deaf. It is kind of comforting knowing that my purely selfish lobbying for things like captioning can benefit other people as well. Let’s be honest, I am no saint. I don’t do things simply because I want to help others. Sure, that is part of my motivation but make no mistake, mostly I do it for me. That so many others benefit from my selfish lobbying is a bonus.

There are many others out there that fight the good fight everyday. Mostly it is for themselves so that they can take part in this big bad world of ours. And we need them. We need them to fight for themselves because through their fight so many other people benefit. Many people simply lack the assertiveness to fight for access. For many the fight for access brings unwanted attention to themselves and they simply do not want to cause trouble. This is not a criticism, It is just the way of the world.

But even those that don’t necessarily take up the fight actually do. Simply by doing things they educate others. People with a disability who live their life everyday educate others about the capabilities of people with a disability. They show people, some with pre-conceived and negative ideas about disability, just what people with a disability can do.

The deaf guy running his own dry cleaning business, the amputee at the bowls club, the bloke with Down Syndrome who takes part in Observed Trial motor cycle competitions – All these people are breaking down barriers simply by doing everyday things. They fight the good fight everyday. Arguably they do more for people with a disability than some of our more esteemed advocates.

We do not acknowledge these everyday heroes enough. Consider these examples of everyday people whose everyday battles are breaking down barriers for us all:

  • My sister in-law fought for a life saving drug for her son who has Hunters Syndrome. She did it for her son but in doing so her efforts have benefited my own son and thousands like him who have a similar genetic condition.
  • There is a mother in Adelaide who has fought for the very best package she can possibly get for her deaf daughter through the NDIS. She did it for her daughter but she has set a precedent that many other deaf kids and their families will benefit from.
  • My friend Sandra who shared her story on the Rebuttal about her brothers battle with substance abuse. She highlighted her frustrations that she as a deaf sibling and her deaf parents could not support him more because of the lack of communication access. This is another example of a personal battle that is making inroads for us all.
  • Fiona, who also told her story through The Rebuttal,  highlighted her long struggle and difficulties with an eating disorder. She is constantly bringing attention the mental health systems lack of flexibility to meet her needs. Her battle will benefit the needs of other deaf people who need support from the system.
  • Gaye Lyons and her battle to get representation for deaf people on the jury. Her personal battle has created untold awareness of the unfairness of Australia’s jury system and disability laws.

All these people are fighting everyday battles for themselves and in doing so are breaking down barriers for us all. Believe me, these people do a better job of changing the world than many of us more esteemed advocates, myself included. Every day heroes – Let’s never forget what they do.

Auslan Interpreting and the NDIS (…and Captioning too)

Joy
Graphic of silhouetted people jumping for joy. The background is multi-coloured.

I have a great job. One of my many responsibilities is to work with young teenagers who have disabilities. Part of my job is to provide training and information that will help them move on to further study and employment. Yesterday I had a great workshop with a group of young people who have vision impairments.  We had set up demonstrations of assistive technology for them. We were  providing information about how this technology can be used in work or in further study. Technology ranged from the humble magnifying glass through to the high tech. They have this awesome machine that can scan any document, even hand written documents, beam in on the text and then read it out – in 25 different types of voice including Indian English.  I don’t know who was more fascinated, them or me.

We touched on how this equipment could be funded. I provided the usual explanation about workplace modifications funding under the Employment Assistance Fund. Someone asked about funding to get the technology at home, because the technology is not cheap. I explained  that in the future this might be possible through the National Disability Insurance Scheme. (NDIS) I asked the kids and their support people if they knew about the NDIS and was shocked to discover that only one person was aware of how the NDIS might help them.

Here we have the largest disability reform that this country has ever seen and no one knew about it.  Not the young people with a vision impairment nor their education support people. There were a couple of parents too and they did not know either. I was dumbstruck. The most important reform for people with a disability in Australia, EVER, and these people had no clue about it.

We know that the Abbott Government, like it has done with the National Broadband Network (NBN), is dragging its feet on the NDIS. One can only hope that it does not destroy the NDIS like it has the NBN. The NDIS, if it is rolled out properly, is going to provide access to people with a disability in Australia in a way that they have only ever dreamed of. I am sure those people with physical disabilities who only get two showers a week are rejoicing and chomping at the bit for the NDIS to be fully rolled out. Likewise carers, who just stay home and care for their kids with disability because they can not afford alternate care and respite, will be hanging out for the day when they might be able to go back to work.

But Deaf people, people who are hard of hearing or parents of kids who are deaf, what do they know about the benefits of the NDIS? I am pretty sure that the majority, like with those students who are vision impaired, don’t know a lot. I wonder how many just think its for THOSE OTHER people with disabilities?

Here’s the thing, if the NDIS is rolled out properly it will be a godsend for people who are deaf. Already at the NDIS trial sites around Australia people who are deaf are benefiting. I know of one guy who upgraded his cochlear implant through NDIS funds because he argued he needed it to communicate effectively with hearing friends, family and at work. I know of a mother that has managed to get interpreting written into her NDIS plan so that her daughter can access swimming lessons. I know of people who are deaf who have had their homes installed with flashing doorbells and alarms through NDIS funds. This is just in the trial sites. Imagine what it will be like if  the Government manages to not cock it up and the NDIS gets rolled out properly?

For me the biggest area that the NDIS will impact for people who are deaf, apart from purchasing of technology, will be through the provision of communication support such as interpreting and captioning. As it stands access to interpreting for people who are deaf is generally provided mostly for things like work, health, court and educational purposes. Interpreting for things like funerals, small community events, weddings, parties and the like is not really covered in any shape or form. There are situations where people who are deaf might want to access a local cooking course or a first aid course. Currently getting interpreters or captioning for these types of courses is hit and miss. More often than not it’s a miss.

But from what I am hearing the barriers to access for these social and community type events, if the NDIS is rolled out properly, could be a thing of the past. In the best case scenario I will be able to enroll in my local Kung Fu Academy and use my NDIS money to provide interpreting. I might even want to learn Yoga, even though my lack of flexibility means the only move I can currently do is The Warrior. That’s not the point – If I want to in the future, the NDIS might mean that I can. This is why I am so excited about the NDIS.

BUT …. It’s not going to be all plain sailing. What I want and the reality are likely to be very different. All these people wanting interpreting or captioning for parties, cooking courses, weddings and the like – What sort of demand will this place on an already under-supplied market?  The NDIS payment rate is generally around $55.50 per hour or thereabouts. Interpreters can apparently claim up to $115 an hour.  How will agencies cope? They charge almost double this now to cover their costs. For $115 an hour and interpreters might just all register themselves as NDIS providers and be booked individually. How will we monitor the quality of the interpreters who do this.

I am sure that the NDIS will require people to provide evidence of their qualifications before funds can be used to pay  them. The problem is that the market will change and interpreters or groups of interpreters might just set themselves up as a separate business and it will be hard to monitor and control the quality. Then and again it is the deaf person in control of the funding. If an interpreter or captioning business is poor they will just take their money elsewhere.

What about training of interpreters.  Governments across Australia have seen fit to cut Auslan training budgets drastically. The NDIS may raise demand so high that the output of trained interpreters probably will lag even further behind demand than it already does. How will we ensure individual interpreters who set themselves up as individual suppliers follow OHS requirements and don’t just hog all the hours for themselves. Possibly we are going to see a rise in repetitive strain injuries. Captioners will be in greater demand too – Who is looking at training for them? So many questions – So few answers.

These are some of the challenges that the NDIS may bring. These are the things that we all need to be considering once (or if) the NDIS is rolled out fully. I am not hearing much discussion about these issues. Hell, I don’t think many people who are deaf have actually considered or understand how the NDIS might benefit them. Challenges, certainly, but I am sure we can address most of them if the Government does not muck up the NDIS. Potentially the NDIS will be the greatest thing ever for people who are deaf, but it will change things. Now is the time to start planning for these changes.

Interpreting Now!

frust
This is a distorted graphic that shows a frustrated woman, mouth open wide with hands tensed with fingers extended.

I have been a Deaf Professional now for nearly 30 years. I commenced my career in 1989 at the Royal South Australian Deaf Society. This was at a time when communication support at work such as Auslan interpreting was almost non existent. I started work as an Employment Officer. I had to cold canvass employers to find jobs for Deaf people. This was also at a time before the National Relay Service. To make phone calls I had to book Barb the accountant, who was a CODA. She would interpret call after call for me. If it was not her it was John. Between them they interpreted literally thousands of calls for me. Sometimes John would interpret meetings for me but mostly I got by with lipreading and pen and paper. It was a tough gig.

When I started studying social work at the University of South Australia I did not have interpreters either. I had buddy note-takers. For a time I taped lectures and gave them to a lady in admin who transcribed them for me, usually  two weeks after the lecture. I can tell you now, being that far behind with your notes is not conductive to good results.

At university I used to dread that someone would ask me a question. In social work there is a topic called Group Work.  Group work is typically used by support groups like Alcoholics Anonymous. There is a strategy in group work known as opening and closing the gate. Closing the gate is where someone is dominating a discussion. You close the gate by saying something like, ” Aden, thank you for your input, is their anyone else in the group that agrees or disagrees with Aden?” Opening the gate is where someone is not actively involved. They might be shy but you can see from their body language that they have something to say. In such cases you might say, “Finlay, I can see you look concerned by that statement, would you like to share your thoughts.” 

Of course when you are the only deaf person in the group, with no interpreter, you are naturally very quiet. What would happen is that an aspiring social worker, who was wanting to milk marks from the lecturer, would inevitably beam in on me and try to “Open the Gate”. I would actually be in a cold sweat.  I would virtually pray that no one would do this. Nine times out of ten it would happen – “I note you are very quiet and looking anxious, do you have a view Gary?”  When it happened I just wanted the ground to open up and swallow me.

My experience at university was the start of my long involvement in campaigning for communication support such as interpreting ( and later captioning ) for people who are deaf. Of course over the years things have changed and made the life of the Deaf Professional so much easier. The National Relay Service was the start. Then came the Internet and technology so that communication became even easier. This opened many doors for deaf people.

In Australia the Disability Discrimination Act (DDA) is considered very much a toothless and ineffective law. This is ironic because when the DDA was introduced in 1992 it was the catalyst to a lot of change. Access to interpreting was one such change. The consequence of this is that more and more deaf people began to graduate and take up professional jobs. Of course these jobs required communication access in the form of interpreting.

Government agencies such as Centrelink, hospitals and the courts began to understand they had an obligation to provide communication support. Of course in 2006 the Government set up the Auslan For Employment Scheme to pay for interpreting in the workplace. This has added even more demand to an under-supplied market. Demand for interpreters went through the roof.  Interpreting, previously just a community service of Deaf Societies, became big business.

Provision of interpreting is complex. Interpreters need to be looked after. Client confidentiality needs to be protected. Interpreters are professionals carrying out a skilled job and need to be paid accordingly. Demand for interpreting is so high that agencies have been established to meet the demand for bookings. Not only do agencies do the bookings they ensure interpreters are looked after, are qualified, meet the needs of the customers and are paid. But these agencies need to survive too. It is not enough for them to just cover their costs, they have to make make a profit. Not only that, interpreter costs that consider travel and time lost between jobs needs to be factored in.

What this has meant is that interpreting costs have become astronomical. This is not a criticism of anyone. No one wants interpreters to be underpaid. No one wants interpreters to get injured. Interpreting work is often seasonal. During holidays, for example, there is often no income for any but the most highly qualified interpreters. As a result many interpreters have actually quit the profession. This has placed even greater demand on an under-supplied market.

It seems to me that the provision of interpreting access has actually come full circle. We have come from a time where interpreting was just a community service of Deaf Society’s to a time where it is now a multi-million dollar industry. We have come to a time where the rapid development and cost of interpreting is actually restricting access for many people who are deaf.

The cost of interpreting, as it is now, means that only organisations that are extremely well resourced can afford it. I am lucky. I work for one such organisation and my access is never denied. As I see it, it is only organisations like large places of learning, government agencies and multinationals who can really afford the cost of interpreting on an on going basis.

Interpreting costs are a particular problem if you live outside the metro area. If you are a deaf person living in the country and need access to an interpreter the cost is much, much higher than for deaf people living in the city. There are very few interpreters that live in the country. This means that many must be sourced from the city. The cost to provide an interpreter to the country is mind blowing. Interpreters are paid a two hour minimum. That is standard. They then charge Kms traveled in their car. To top this off they then charge the full rate of interpreting for the time they travel.

Let’s say, for example, an interpreter is needed in Warrnambool, about  three hours from Melbourne. There is no local interpreter. Interpreters must be sourced from Melbourne. The job is one hour. This is the cost break down:

  1. Two hour minimum payment – $86 an hour –                              $   172.00
  2. Kms on the car @ 47 cents km @ 540 kms                                    $    253.80
  3. Time traveled on road $86 an hour @ 6 hours                             $    516.00

Total:                                                                                                                 $   941.80

If you are a deaf worker employed in the city your employer will fork out $172.00, which is quite considerable for a one hour job. At $941.80 the cost for an employer in Warrnambool is five and a half times more than for an employer in Melbourne. God forbid if the meeting goes for two hours then the employer will need two interpreters and the cost is almost $2 000. This is clearly not sustainable.

Some people might say that the deaf employee has $6 000 from the Auslan For Employment Scheme. At these costs this will be used up in no time. What if you are a small community organisation providing local training? What if you are a little neighborhood house that wants to provide parenting courses to local people and a deaf person would like to attend? What if a funeral is local? I can tell you if you are deaf and living in the country your chance of getting funding for the cost of interpreting for these things is very slim. If you were Tony Abbott you might call living in the country a “Life Style” choice. Of course this is nonsense.

Clearly we have got to a point where the cost of interpreting access is becoming a barrier. The cost of access for many, particularly in the country, is simply too high. Put simply the cost of access is pricing many deaf people out of the market and something needs to be done. Some will say that organisations should budget ahead to meet these needs but this is not realistic. If you are a locally based agency, small and on a limited budget no amount of forward planning will meet this type of cost. The result? Many valuable locally based services are simply not accessible to deaf people. This means deaf people are increasingly isolated. This is true for both the country and the city.

This is not anyone’s fault. I don’t blame the interpreters, they need to be paid appropriately. I don’t blame the agencies they need to make a profit. Interpreter conditions have been developed to ensure the ongoing health and well being of interpreters and should not be compromised. But clearly we have a problem and need to start thinking about how we can resolve it.

What are the answers? Perhaps we need governments to recognise the issue and offer more funding similar to the way interpreters are provided through NABS. Perhaps when the NDIS is fully rolled out these costs will be met. If this is the case then the Deaf community needs to be loud and vocal in ensuring that the NDIS is rolled out to its full capacity and not just see it as a thing for those other disabled people.

Perhaps we need more training and acceptance of what technology can do to beat the demons of distance and demand. Certainly, providing more interpreting through means like Skype will cut travel costs and time and make more interpreting hours available. Perhaps there is some scope to make online interpreting cheaper than live interpreting because of the reduced cost in providing it. We also need to consider the fact that any strategy that increases access might  place more stress on an already under-supplied market.

What is clear is that the landscape for the provision of interpreting is changing. As it stands too many people who are deaf are being priced out of access. Surely it is unfair that people like myself should get the lions share of access simply because I have an employer that has the resources to provide it. Access should be for everyone but this is not happening now. It is time for us all to put our collective thinking caps on so that access is for all deaf people and not just for a privileged few.

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Some Days …….

wand
Graphic shows a hand on a magic wand. The background is dark blue. There is a bright flash at the end of the wand representing its power.

Dancing with the Stars struggled with disability again. Paralympian, Kelly Cartwright, was dancing.  Kelly had part of her leg amputated when she was 15 due to cancer. Keen on sport she continued her passion. She became an elite sportsperson competing at the Paralympics and world competitions in running and the long jump. She has broken numerous world records and won medals at competitions around the globe.

The reaction of the judges to her dancing was cringe-worthy.“You gutsy thing!!!” extolled Shane the host. Every third word that came out of judge Kym Johnson’s mouth was INSPIRATION!! –  ” You are such an inspiration. It is inspirational watching you.”, she yawped. Helen Richie was only marginally better. Meanwhile Todd brought attention to everything but Kelly’s dancing by frequently expressing his fascination with her leg.  Her dancing, which was of a very high calibre, became secondary.

We disability activist and members of the Deaf community do not like to focus on the negatives and what is missing. This is part of the reason we get so frustrated at how shows like Dancing with the Stars deal with disability. We like to focus on the positives and what we contribute to society. We like to focus on attributes and the value of diversity. But even so, I can tell you that there are times when being deaf or having any sort of disability just sucks – big time. There are times that if you could just wave a wand over me and make me hearing tomorrow I would take it in a flash.

Like trying to register for a conference. Emailing and asking if interpreters or captioning are to be provided. Like waiting four months for a response. Then to be told by a clueless organiser that no interpreters or captioning will be provided because, golly gosh, there will be a hearing loop available. Of course this necessitated me having to campaign so that the organisers would provide interpreters and captioning – AGAIN!

Sure I got them to  provide. I did this by getting many of my disability activist colleagues to call them and request interpreters or captioning so that they were swamped with requests.  In the end the demand was so great that they had no choice but to provide. Sometimes, no I lie – all the time, I wish I could just register and rock up without having to go through this charade over and over again.

But sometimes my reasons for wanting to hear are more profound. Last week I caught a tram to work. As I dismounted I saw a man in the distance. He was running frantically up the middle of the tram tracks. He was waving and screaming desperately for the tram to wait for him. As the man came closer I could see that he had Down Syndrome.

The driver could clearly see the man. How could he not when he was running up the middle of the tracks in his full view? Despite seeing the man and his obvious distress the driver closed his doors and began to drive off slowly. The man was not about to give up easily. He ran straight to the front of the tram and began to bang on the window. Despite this the driver still edged the tram forward.

The man ran along the side of the tram and began to bang on the sides, screaming to be let in. Passengers at the tram stop looked on in horror at the spectacle. There were railings that created a safety barrier between the stop and the tram tracks. The man ran between the railings and the tram, thumping the side of the tram in frustration. All the while he was screaming at the top of his voice to be let in.

I ran over to the man and leaned over the railings. I grabbed him in a massive bear hug and pulled him away from the tram. The tram pulled away and went off on its journey. Not stopping nor thinking of the safety and needs of the man. I held him tight until the tram was gone and he was safe. He looked at me and screamed. His anger and frustration were palpable.  He was yelling at me and imploring to me to stop the tram but I could not.

I sat him down at the tram stop seat and held his shoulders for a moment. He was sobbing. I so wanted to be able to sit there and just talk to him and calm him down. I could not understand him. I could not lip-read him. At that moment in time I just wanted to be hearing.

I just wanted to sit there and talk to him to provide him with the comfort that he needed. Instead I just said another train would be along shortly and left. As I looked over my shoulder he was inconsolable. I felt completely useless. Sadly, not one other person sat with him or supported him.

So while I have spent a lifetime campaigning for a fairer society for people with a disability there are times that being deaf just sucks. While I have spent a life time imploring our society to be more inclusive for people with a disability, being deaf is often the crown of thorns that I wear.

I am sure it is the same for other people with a disability. The carer that does not arrive, the stairs that prevent access, the toilets used as store rooms, the lack of verbal announcements at train stations, Craptiview and attitudes – All of these things give people with a disability just cause just to sometimes just wish their disability away.

Some days …..