Don’t Turn Out The Lights …..! My NDIS Journey.

I have just ended almost four years working in the NDIS environment. Most of them were in the Local Area Coordination environment. I was fortunate to spend some time within the actual NDIA too. I can say, with some authority, the NDIS is an enigma. When it is good, it is very good. When it is bad it is dreadful. When it is very bad it is downright tragic and immensely frustrating.

I started in 2016. I was a Senior Local Area Coordinator. I was responsible for around 6 staff.  There were about 15 Local Area Coordinators and between three seniors we supervised these people. I remember being very nervous at the start. Being deaf I worried, as most deaf professionals do, as to how communication would work out.

On my first day in the office the manager called three impromptu meetings on the floor. I understood little. I had to ask team mates what had been discussed. Not a great start considering that this was Australia’s next big thing for disability and here was me, the disabled person, not included. The manager didn’t seem to get the concept of inclusion.

I spoke to her quickly about the issues. She was empathetic but said that because everything was rapid in change and nature she had to relay information quickly. But then on the second day an amazing thing happened. The manager called an impromptu meeting. Without prompting and without discussion a Local Area Coordinator (LAC) sat down beside me, opened up her laptop and began to type out for me what people were discussing. This was the beginning of a wonderful journey with LACs in my team. I can’t speak highly enough of them. They were brilliant and supportive throughout my nearly 4 years.

And this was generally my experience of the NDIS. LAC and base planners of the NDIS were generally disability savvy, bar a few. Generally the lower the ranking the more savvy and responsive that they were. As you go higher up the NDIS ranking, often the less savvy they are. There is definitely a need for more people with lived experience of disability, including disabled people themselves, in the upper levels of NDIS management.

I well remember my first planning meeting. Although I was a Senior I also did planning meetings. I loved them. I loved the contact with the real people. I loved the challenge of using the legislation to get as much as possible from the NDIS to meet participant needs.

My first participants had more than one disability. They were HEN fed. They attended Day Service. They had an intellectual disability and apparently autism too. They were a wheelchair user but needed assistance to get about. The participants was an adult cared for by her single mum. The participant had a brother who was autistic. If ever there was a candidate for carer burnout the mum was it. But she didn’t complain. Indeed, I had to convince her to accept support.

I loved the challenge of assisting participants to have their needs met. The more complex the better. The NDIS is actually pretty well designed for this. It actually has a legislation that is reasonably well written and able to support a multitude of complex needs. It is not the NDIS, per se, that is the problem. It is certain people within it. This is at both NDIS and partner organisation level.

The paradox, I believe, is that so many within the NDIS framework don’t understand the purpose nor the reason for the establishment of the NDIS. Particularly those at management and decision making level. It is probably worth revisiting why the program was set up.

1) It is an insurance scheme. Designed so that support can be given no matter when a person becomes part of the disability family. Mind you, if compensation or road accident is involved, this can complicate things.

2) It is an investment model. If you provide support to people with a disability and their support networks they get more opportunities to be part of society. This can be through work, play, education and the like. Through being active and a contributing member of society participants generate a return for the investment.

3)  It’s the right thing to do. Cos having a shower twice a week and being able to get out of your home only when a time can be rostered to you is a sucky way to live.

4) For many people who have children with a disability it is their life forever. They cannot work and they plan their lives wholly around their children with a disability. They are often supporting and looking after these kids until they and their children are elderly. This is not fair to the support people nor the person with a disability who does not get an opportunity to experience anything else independent of their family.

5) The scheme gives power to the person with a disability.  They control their own funding. They decide how to spend their funding and on whom. It’s not wasted on overheads and money hungry CEOs. Well it shouldn’t be anyway…. Sadly, a lot of NDIS money is wasted on top-heavy management and consultants. More on that later.

These are the main principles as to why the NDIS was created. I strongly believe that if those people up top understood these key principles the NDIS would be in a better place. Sadly, the powers that be, including senior planners, leaders of teams and the like, not just the upper, upper management, have all become obsessed with the sustainability of the scheme. They have become financial guardians rather than champions of the original principles of the scheme.

Anyone working within the scheme whose first thought on a participants plan is the cost is working in the wrong job. Sure, one must consider the cost and the value for money component but primarily they should be thinking, first and foremost, what impact will the plan have on the disabled person’s life. The latter consideration, far too often, gets lip service.

That’s why some poor fellow in Colac got taken to court by the NDIS. He wanted his transport funded to his place of employment, a Disability Employment Enterprise. “No”, said the NDIS. They only wanted to fund 75%, or something like that. The problem is that the participant had to travel more than 150 kms a day to get to work. I was horrified that within the NDIS and Partner organisation, including at LAC level, people thought the NDIS was right.

They suggested that the participant should work closer to home. They suggested that if he wanted to work so far away, that was his choice. They suggested he could move closer and live near work. They argued everyone had to pay their transport costs to work and so should he. Reasonable arguments on the surface, one might think.

But they were heartless and unreasonable arguments. Why? Well because the employment options for this fellow were and are limited. Sure, maybe later he could go on to open employment close to home but at that particular point in time a disability employment enterprise was his sole option. He was not yet ready, nor capable, to live alone so could not live closer to work. Sure, maybe  capacity building could be funded and later he could develop skills to live independently and closer to work. But at that point in time he could not. No, he couldn’t work closer to home because the place of work he had was the closest disability enterprise to him. No, 25 % is not reasonable for him to pay because “others do”. Especially given that he was probably being paid $2.00 an hour if he was lucky. The distance, and therefore the transport, were a valid cost of his disability. But the NDIS were having nothing of it. So they spent millions on legal fees dragging this poor fellow through court. It was and is a disgrace.

Then there was the high profile case of Mark Bagshaw. A wonderful disability advocate who for many years promoted and argued for investment models of disability, just like the NDIS. The NDIS refused him vehicle modifications because he has a wife who can drive him around and, apparently, he could use public transport if he likes.

Now, this is just bizarre because independence and relying less on support people like family is one of the major platforms of the NDIS. He also lives in a rural area where accessible public transport is limited. ( Don’t tell me the NDIS are right because the NDIS are not supposed to replace state government responsibilities like public transport or I will slap you.)

But still the NDIS saw fit to say no. Mark is no shrinking violet and appealed. I believe he won. The point is that no one should have to go through that. No one should be made feel so helpless. No one should have their dignity taken away like this. The bigger point is that the NDIS was set up to provide the things that Mark was asking. Yet still it happened,

Many in the NDIS also have no idea of reasonable. To be fair, reasonable is a hard concept to grasp. Then and again so is common sense. Take parental responsibility. What’s a reasonable parental responsibility. Are parents of disabled kids expected to give up their lives and jobs? Are they expected to get minimal respite even when their kids are bashing holes in walls, biting them and keeping them awake all night? Are they expected to renegotiate their work hours because after school care lacks capacity or skills to be able to support their kids?

Yes, according to many decision makers within the NDIS. The NDIS are not baby sitters they will say. There are examples of where the NDIS will stick to their guns to the point where parents are willing to relinquish their disabled children because they are so exhausted. For god sake, the legislation is clear, maintaining informal supports is a crucial platform. Surely this includes parents?

Then there was my team leader in the NDIS who insisted that parents had to take full responsibility, or near full responsibility, until their kids are 14. Asked to show me where it says that in the legislation she could not. But this happens. This is the way some people who have great decision making power within the NDIS think.

They will insist that support from after school care is the responsibility of the after school care provider. If the provider cannot then parents have to give up work because the NDIS does not fund baby sitting. Not sure where the NDIS principle of economic participation comes into their thinking. The thinking of many within the NDIS, and sadly partner organisations, has no basis in logic nor the legislation. Many just make it up as they go along.

The administrative delays and the illogical decisions of the NDIS are well documented. They happen and the criticisms are well warranted. When I worked briefly as a Senior Planner my team leader took 4 months to approve an urgent plan for a participant that frequently absconded. The participant often beat up her mother. Mum was close to a breakdown. Participant, an extremely vulnerable one at that, was in danger of being homeless. It did not come to that, but it was a close run thing.

These are just some of the stories that show the NDIS at its worst. But it is not all doom and gloom. I worked with a participant who could not leave their home because their Multiple Sclerosis had deteriorated to a point that they could no longer walk. They needed a ramp to get down the stairs. The only way for the participant to get out was for someone to carry them. They had no independence. Cue the NDIS and home modifications and a sembelance of independence is restored.  It only took three years, but at least it happened.

Then there was my second ever participant who required a modified bicycle so she could cycle with her family and friends. She had strength issues and the bike was modified so that she could move the pedals with her limited strength. Believe it or not, the NDIS initially turned her down. Bikes are parental responsibility they said.

The bike she needed was substantially more expensive than most bikes parents are expected to buy and was therefore a cost of disability. I argued that the bike was a tool for community participation, a tool to build muscle strength and a tool to improve coordination. I also threw the vomitus “Ordinary Life” principle back at the NDIS. “Surely”, I argued, ” …there is nothing more normal than riding a bike.”

Eventually the NDIS came to the party and purchased the bike, The parents had to contribute the price of an average bike, about $200. Peanuts, considering that the modified bike was around $1800. Three years later, and after numerous physiotherapist and occupational therapist reports, the NDIS approved the bike. Mum sent me a beautiful photo of her daughter riding the bike for the first time.

I will always cherish the stories as well. Deaf grandpa who got a vibrating alarm clock so that his wife didn’t have to wake him all the time. He was asleep one day and Grandma showed his grand children how the clock worked, Grandpa woke with a start. The grandchild was in raptures. “Do it again Nanny”, they pleaded.

Coaching the LACS was also fun. I’ll never forget during one session one of My LACs was trying to tell me that the participant wanted to be part of a group. She mimed Group using a hand gesture but inadvertently used the Auslan sign for vagina. I laughed and advised her not to use that gesture. She looked at me puzzled for a few seconds, put her hand over her mouth, and said, ” Oh my god , I just signed vagina didnt I?”  I laughed myself to tears for a very long time.

And then the one that wrote in her plan that little Johnny,  “Can now walk but unfortunately cannot stop and keeps walking into walls.” I know Johnny’s issues are serious, but after a giggle fit on my part I told her she might want to rewrite that to, “Improved mobility, but still has issues with coordination.” I have lots of stories like these. The stories and the LACs have made my life the richer.

I am a great believer in the NDIS and sincerely hope it becomes the program it should be and the one that we all dreamed for. It still has a way to go but It can and will succeed. The powers that be need to stop saying it is just teething problems, it isn’t. Six years on these issues are down to people in high places that do not understand disability.

They are quite happy to spend millions on consultants and lawyers but blink at spending it on the people that matter. It is a scandal that recruitment companies can get up to $20 million to find contractors for the NDIS. It is a scandal that the CEO gets over $700 000 in his salary package. It is a scandal that lawyers are paid millions because the NDIS don’t want to pay for essential supports in the name of sustainability. These are not teething problems. They are just sheer stupidity an pig headedness.

But my time in NDIS land has come to an end. I loved every moment of it with the participants and the LACS. I loved the management perhaps a little less. However, I regret nothing.

To the participants, the NDIS planners and, most of all, the LACs who made my time in the NDIS environment so rich, I say thank you. I am a better person for it. Keep on doing what you do best – Challenging the management and getting the system to support people with a disability to the maximum. Keep up the good fight and in the meantime dont’t turn off the lights when I leave.

 

Melanie’s Story

Last year the Government established the Royal Commission into Abuse and Neglect of People with a Disability.  Abuse and neglect of people with a disability is, sadly, very common. It hits home when it has impacted on a friend. One such friend, Melanie, has asked to share her story on The Rebuttal. The Royal Commission is looking for stories and submissions. I hope that they read this story. As a word of warning, if you are a person that has a disability and have suffered abuse, or even if you have just suffered abuse and do not have a disability, Melanie’s story may trigger a negative response in you and you may not wish to read further.

I’m Melanie Merhi, I want to talk about how I finally got justice and how the system FAILED me.

I’ll share my story

I’m deaf, I use Auslan to communicate.

I’ve been fighting for justice for years since I first reported that I was sexually abused by my regular taxi driver over a period of two years.

I was transported by taxis to school and home everyday. There were and are many children like me.  They are funded by the government to be transported to and from schools that provide specialist support for them.

I was ten years old when the abuse started it went on for two years.

I firstly reported to a teacher at the high school. On hearing my complaint she basically placed the responsibility back on me and asked me what I wanted to do about it. She asked me if I wanted her to contact my parents or the police about what had happened to me. ( It should be noted here that under the law, professionals are mandated to report such incidents once they are disclosed, Editor comment.)

I said,  ” No, not yet. I’m not ready yet.” I was unaware that she had breached duty of care responsibilities. I told her in late March/early April 2003. By June I was ready to report it and she took me to the Vic Police at the old World Trade Centre in Melbourne. I was 17 years old.

My statement was not taken seriously. My case was investigated and at the end they said to me “It’s your word against his”. The teacher interpreted the statement for me.

So the case was closed.

I was only a child and I had no knowledge. I had no idea of what was right. I had no information as to whether I should see a qualified person to provide support.

I always had this instinct that something was not right.  This feeling continued for many years. In 2014 I started working on it and I started see a psychologist. He encouraged me to go back and see what my rights were and what further action could be taken.

I made an appointment with Vic Police to see what could be done. I went to Flemington Vic Police. It was a dead end for me again because they said to me that there was nothing that they could do and that my statement and file had been destroyed.

It was like a huge truck hitting me. I felt angry, upset and confused, just like when I was 17 years old. The interpreter informed me that by law any sex abuse statement that has been made should not have been destroyed for at least 50 years.

The police handed me out a booklet and said look for the victims of crime assist tribunal. They told me that they will acknowledge the pain and suffering I had been through. I took that path and had a meeting with the organisation. They took me onboard around in May 2014. Fast forward to the VOCAT court in November, they offered to pay money to take my family on a holiday. I was shocked, this was not what I wanted.

I told them that I wanted the taxi driver to be found guilty. I told them that this was the path I wanted to persue.

The next day, after court, a friends mother asked me if she could talk and ask me questions. I was happy to do this.

That’s the day when my life CHANGED.

The questions she asked me were:

  • The school I went to and I reported the abuse to the teacher who was the “social worker”?
  • Did the school contact your parents?
  • Did they contact the police?
  • Did the principal contact dept of human service?
  • Did they contact Child protection services?
  • Did they provide counselling?

I just shook my head to every question. We then looked up the law and realised mandatory reporting was established in 2000 and that the school had not followed protocol.

My friends mother then asked me about Vic Police…

She asked…

Was an auslan interpreter provided? Apparently, although the teacher “social worker” is a qualified Auslan interpreter her role was conflicted.

At the time I genuinely believed she was a qualified social worker she was really only a welfare co-orindator.

Did the Vic police contact your parents?

Did Vic police make sure you had an adult/guardian presented while you were giving statement?

I was underage and not an adult. All of these things should not have occurred.

Did they provide counselling?

My friends mother asked me lot’s of other questions along these lines.

I was dumbfounded. I realised that I was not treated with respect. I realised that correct processes had not been followed. The system had let me down.

I sought advice. It was recommended that I get a case manager from People with Disabilities based in Sydney. The case manager, Linda, flew down to Melbourne and had a meeting with me. She said I had a very valid case and that she would get me a good lawyer to handle this matter. This was in January in 2015.

During that time she also organised me to meet an organisation called Know More that was helping people to submit their stories to the Royal Commission focusing on Sex Abuse in institutions.

With Know More I completed a mountain of paper work and answered hundreds of questions that centred on the handling of my case by the school and Vic Police in 2003.

The paperwork was submitted. A few weeks later an intake worker from the Royal Commission asked if I would like them to contact Vic police and see if I could get a different outcome. I consented to this. All I wanted was justice.

So I met this detective in August 2015. After several communications she notified me that she had actually found my statement and the file. I went and met her in person I couldn’t believe that she had my file.

I have documents from the freedom of information and Vic Police stating the statement had been destroyed but it was found… So what really happened?

I saw the statement for the first time since I reported it back in 2003. That’s when I realised that a lot of information was missing from the statement. It was lacking details. I remember I told them everything but a lot of what I disclosed was not in the statement.

So I provided additional information that was missing. I also had a private session with a Royal Commissioner. I remember him telling me at he end of the session do not give up this fight.

They (Royal Commission) wanted me to testify. I couldn’t because the investigation was ongoing. I was approached by a private investigator from the Royal Commission and I was asked more questions. The truth began to unfold. I found out that I was supposed to be interviewed by a detective when I first reported the abuse. I was only interviewed by a senior constable. It was just an ongoing battle.  Many mistakes in process had been made in the handling of my case.

How did everything go so wrong?

It also was mentioned that the person who was handling the case back in 2003 was a criminal. Why was this not investigated?

So anyway…

The investigation went on for a very long time. The taxi driver was finally charged in December 2016.

Then I had to go committal hearing in the following year September. It was decided by the magistrate that there was enough evidence to head to trial. I was cross examined for the whole day. I was just exhausted.

But during those years from 2015 to present – my lawyer was always trying to negotiate with the Vic police and Dept of Education to agree to a settlement. Vic Police were offering compensation but part of the settlement was that they wanted me to stay quiet about the mistakes that were made and how I was treated!

Even after the taxi driver was found guilty and they still want me to stay quiet.

I declined their offer because I wanted to raise awareness in the community about what had happened to me. I am the living proof – People who are vulnerable deserve to have someone to speak out and help them.

I want the community to be more aware that something needs to be done and it needs to be changed. Paying people to be quiet when massive mistakes are made is not ethical. It may still be happening and we won’t know because no one is speaking up about it.

The Department of Education kept postponing and coming up with excuses. I had to see 4 different psychiatrist. It was a struggle because I had to keep repeating everything. This was cruel and traumatic.

They have admitted that they failed me. Both of them, Vic Police and the Dept of Education.

Meditation has been set by the Dept of Education and it will be happening soon.

I was battling with them while preparing myself for the trial and raising our family. Everything at the same time. I was also going through a major depression, anxiety and post traumatic stress disorder.

Trial was set for September 2018 but it was adjourned to this year July, and it was the most brutal experience I’ve ever experienced in my life.

I was cross examined for 3 days.

The taxi driver was found GUILTY on two out of three charges after 5 days of deliberation from the jury. I finally got justice after all those years. We worked together for more than 4 years on this case.

The case is still pending because we are waiting for the judge to decide on the sentencing.

It’s time for me to get out there and raise awareness and speak out to the public. I want to make a difference to someone’s life and change the system. We need a system that we can have faith in. What happened to me should never have happened and should never happen to anyone else ever again!

Where’s Joy?

Joy has been my friend for so  many years. She has been with me throughout my life journey. Every single thing that made me happy she has been there with me. Without fail she cried and laughed with me. From the deepest life moments to simplest ones. She was there, always with me. But she has been missing of late and I miss her so.

As a kid she was always there with me. In the backyard with my toy trucks and cars. Digging channels and filling them with buckets of water. The trucks helped me make the channels. My own little rivers and reservoirs. My Gi Jo would swim within them and save the world, kill the sharks and be the hero. Joy was there with me laughing and in awe at these simple pleasures.

And when every weekend when the butterflies hit. Soccer was on and a goal was to be had. Joy was there with me. She shared my excitement, she shared my thrills. Each goal I scored she celebrated with me. The goal where I beat four players from the half way line to slot it though. The goal I hit first time on the volley. That very first goal I ever scored at the age of 7 from a neat pass from Keith Webster. Joy was there. She cheered and screamed with me, louder than even my mum.

And when My dad gave me twenty cents a goal. Telling me I played well but at the same time giving me advice as to what I could do better. As I spent the money on lollies and pop, dreaming again of the goals that I had scored and would score. Joy enjoyed the moment with me. These simple pleasures she understood.

Even in hard times she was there. After a badly broken arm that made me have to return to school she was there as I tackled year 12 and passed.

She was there through the trials and tribulations of university that I overcame. The graduations and the first job. She was there throughout my achievements as I tackled the world and helped to make it a better place for people with a disability and those who are Deaf.

She felt my pain and sense of achievement as each barrier was broken down. I and others benefitted as a result. Her pride in my achievements was as great as my own and my parents.

That first job at the Deaf Society. Assisting Deaf people into employment. The first job placement I got for a Deaf person with the post office. The bar course at TAFE that I established for Deaf people, she was there. The Australian first mentor program for young Deaf people. The first fully accessible website. She was there with me. Proud and humbled at what I had done.

My first kiss, my first girlfriend. She witnessed them with me. From Michele, to Liz, to Kirsty and to Anita she was there. Happy, excited and exalted as these women helped me grow into the man that I am today.

And that day I met my wife. At my front door, in my Humphrey Bear Boxer shorts. The day I said hello to the woman that would share the rest of my life with me.

She was there at the birth of all my children. She laughed with me as Aden peed on his mother as he was first introduced. She stood in awe as each of my children was birthed. She watched eager and with pride as they grew into the brilliant young men that they are today.

Joy was there for everything. My happiness was her happiness.

And the day I married  my wife. My wife arrived early and I was chatting with my groomsmen at the front of the church. I had to scurry down the aisle. The moment I said I Do. She was their as we laughed when Paul walked in on us consummating our marriage. She laughed with Marnie and I when our friends trashed our wedding room. Joy has shared everything with me.

The sunset, the flowers and the holidays. The dogs I have grown up with and Pepe the budgie. My family holidays at Stansbury, Kangaroo Island, Port Lincoln or my wonderful holiday in Italy with Marnie.

The good times shared with friends. The wonderful meals and the glasses of wine. The whisky with old friends and simple good times. Joy has shared them all with me. She and I have been lucky.

But lately Joy has been missing. I miss her. I need her. I hope she returns soon. Life without Joy is not much life at all. I am sure she is not far away. Please Joy, come back soon.

Will Audists PLEASE GO AWAY!!

I am having a love hate relationship with Deafness forum at the moment. I get it that they have a broad mandate. I get it that they have to promote hearing health and hearing loss prevention. I know losing your hearing is fucked. It’s hard work. I wouldn’t wish it on anyone. Ok, let’s do our best for those that can hear and assist them to continue that way because adapting to deafness at a later age is horrible. It is isolating and soul destroying.

BUT that does not give Deafness Forum and excuse to turn every single person with a hearing loss into a sad sack. It does not give Deafness forum an excuse to promote hearing as the utimate  and only way. It does not give them and excuse to turn people with a hearing loss into lesser beings who can only be complete if they hear!

Remember Prawngate?  People may well remember that a hearing aid company advertised tiny hearing aids. They had a photo of a deaf person wearing two prawns behind their ears. You know big ugly things. My wife was so traumatised she could not wear her aids for a year. She has a phobia of prawns you see. Yes, I jest.

The point is that the advertisement painted deafness in a negative light. It depicited deafness as something that needed to be hidden. In doing so it belittles all deaf people. Rightfully the Deaf Community erupted. The company concerned immediately removed the advertisements and apologised.

The Royal Institute of Deaf and Blind Children did something similar when it had a fundraising campaign depiciting deafblindness with a teddy bear with no ears and no eyes. Likewise they removed the ofending ads when the Deaf community erupted and also apologised.

In the space of two weeks Deafness Forum have shown nothing but rank audism. First they published one of those inspiration porn videos of  tearful parents at Cochlear Implant switch on time – ” Johnny hears I love you for the first time.” type video. We all know what misleading and damaging twaddle this is. Then, inexplicitally, they published a video asking us all if we could hear and identify the different bird calls in the video and finally they had this. Click on the picture to read.

Photograph is of media personality and ABC chair, Ita Butterose.

 

 

 

 

 

 

 

What is wrong with this article?  Well, once again it depicits deafness in a negative light. It belittles deafness. Says Ita, “My father was so stubborn about his hearing loss. We’d have conversations where I’d say something like, ‘The sun’s out’, and he’d say, ‘Yes, I missed the bus’”

And yet again it paints deafness as something that is embarrassing and needs to be hidden – “We are an ageing population and the hearing aids nowadays are so small and so much better..” The worst thing about the latter comment is that it makes deafness out to be just about getting old – of course it is not and deafness can be found in all age groups.

Now I know Ita meant well. My issue is not with her. My issue is with Deafness Forum sharing this article. As an advocacy organisation Deafness Forum need to be educating the media as to how they should be talking about deafness. They need to be educating the media about using positive imagery and about steering away from the constant negativity surrounding being deaf.

While I acknowledge going deaf can be hard I know there are thousands upon thousands of people who are deaf who don’t want to be constantly depicited as sad sacks that need to be fixed!  More importantly we don’t want hearing to be promoted as the ultimate and only way!

There is a way to promote Deafness in a positve way. Hiding it and denying it is not one! Promoting hearing as the ultimate is not one. We need balance and Deafness Forum at present are not doing that – I am sick of the Audist drivel they are promoting – They have to do better than that!

In closing I present for them a sample of positive imagery in deafness – PLEASE TAKE NOTE!

 

 

 

 

 

deaf4

Accessibility Journey

Photo is of Gary using Video Relay Interpreting at his desk.

A good friend agreed to be my referee for a prestigous Board position recently. It’s not one of those Board positions where you are expected to volunteer your time out of the goodness of your heart. They will actually pay me for my time. A rarity in the disabity area where we are expected to give and keep on giving. But this post is not about that, its about what my friend said when he completed my referee check, “I described you as a pioneer for access to tertiary education for disability ….”

I laughed and made some self-depreciating comment along the lines of, “My invoice is in the mail.” But truth be known I was proud, touched and even a little emotional. You see my journey to education access has been a long one. My friends kind comments gave me pause to reflect. I decided to write about it, as I do. But it is a long story so it will be in two parts. I hope the reader finds my journey to accessibility as interesting as I have..

My Deafness became profound between ages of 9 and 10. It was not a fun time. I was fitted with hearing aids and wouldn’t wear them. Not an uncommon thing for young deaf kids. I couldn’t hear much with them anyway. My academic work suffered. I went from being near top of the class to near the bottom. That is the sort of impact not being able to hear can have.

I had no support in class. I kind of bluffed my way through. Copying friends work. Constantly looking over my shoulder. Trying to work out what to do because I had not heard the teacher. Always in trouble because I could no longer monitor my voice. I couldn’t whipser and still can’t. I was told to be quiet constantly. “TELL KERRIDGE TO SHUT UP.” Dutifully my desk mates would let me know I had that I had been thus told. I came to loathe school.

One day we had music. We sang along to Scotland the Brave. I sang too, following the words from the song book. I was really into it, belting it out at the toop of my voice. Suddenly I became aware that I was the only one singing. I was miles behind everyone. Out of tune too. Everyone was staring. Even the teacher had to stifle a laugh. Comical as it must have been, my humiliation was extreme.

And you  know friends treat you different. They no longer want you on their team. You are always chosen last. And they tease you. They try to make you lipread things wrong. “Are you a girl ….???” – “Are you a poof …???”

Kids are cruel, extremely so. I knew what they were doing and sometimes I would  play along just to see their reaction. Believe me deafness can lead you to lose faith in people very quickly.

You feel stupid. You feel worthless. Your school work comes back with an F. Your maths is all wrong. You dont know what to do when the teacher is explaining games or activities. You just want to curl up and die. It is hard, very hard. This was what school was like for me for four long years.

You try to compensate. You become the bad kid in the class. The negative attention to your behaviour is better than the constant struggle with deafness. You talk all the time so you dont have to talk to people or listen to them. You talk over people and distract everyone. You see, doing all the talking is better than having to listen when you cannot hear.

It was a traumatic time. A horrible time. It came to head in high school, I began to wag school rather than have to confront the evey day struggle of being deaf in a hearing school. I would catch the bus and travel right on past the school. All the way to Elizabeth shopping centre. I was well informed though because I would read the newspaper on the public toilet from start to finish. I did this for fourteen days in a row before the school saw sense to call my mum and ask where I was.

I was in a bad way at the time. I experiencing paranoia. Being deaf in a hearing environment, when you are the only deaf person, is a nightmare for any adolescent. I well recall sitting at the back of the school bus religiously. I did this so that I could see everyone. You see I had this unhealthy fear that people might talk to me or about me. Not being able to hear people caused me paranoia. I feared they were all talking about me and laughing at me. By sitting at the back I could at least see everyone and in this small way my anxiety was lessened.

To cut a long story short my parents decided that I needed extra support and I ended up at the now defunct Centre for Hearing Impaired Children at Strathmont High School. There I received support for the first time since losing my hearing around the age of 9. I was 14 years old. For the first time I met other deaf young people. For the first time I was exposed to sign language. With support from the teachers of the deaf I began to rediscover my academic mojo.

Support at the school was just adequate by todays standards. I mean when I started at the school I could not sign. Interpreting classes was not really an option. But also, looking back, the signing skills of the teachers of the deaf was so poor it was probably a good thing that they did not interpret for me.

Instead they took notes. They would sit next to me me and note the SALIENT points of the class. I emphasise salient because the access that I got to the information was entirely dependent on whether the teacher of the deaf thought it was relevant or not.

So I still missed out on a lot. I missed out on peer learning for example. I missed most of the questions and the answers from the class. All this is important for learning. Still, the note-taking of the teachers was adequate enough for my academic progress to pick up.

I was not then, and am not now, your ideal student. I get bored and distracted easily. My mind drifts. I would have “Can’t be Fucked” days and fake sickness and stay home. I often missed the bus and was late. In short, I did not help myself. In hindsight those teachers did a wonderful job with someone who was often his own worst enemy.

I am grateful for the support that they provided. I have no doubt that without it, and if I had stayed in a mainstream school without support, it is unlikely that I would have succeeded academically at all. I hate to think where I would have ended up given the traumatic experience of school that I had experienced before moving to Strathmont.

The school was a bit of a culture shock really. Deaf kids are so nosey. They gather round you and ask you so many questions. You Deaf?  Your parents Deaf? Brother sister Deaf? How go Deaf? You sign? They never shut up. The thing about these kids that I noticed,. even at that early age, was the gap in their language. Well at least their English language. Their writing was appalling. They didn’t get my jokes. I was used to odd looks when I told jokes but completely blank stares was another thing altogether.

My arrival at the school was not a romantic ever after story but it was the awakening in me for the fight for Deaf rights. I mean I had just come from five years of hell. A hell that no kid should ever have to experience. I was bitter about that. I was witnessing, although I did not know it at the time, language deprivation among deaf kids for the first time.

I was full of questions. Why was their English so bad? Why did the kids from Deaf families, who signed and didn’t speak, have better English than the kids from the hearing families? Surely the reverse should be true? As I learnt to sign I realised that the teachers of the deaf at the school signed terribly and sometimes even struggled to understand the deaf kids. This realisation left me appalled.

I remember soon after leaving school I penned an article for the Parents of Hearing Impaired Children in South Australia. I basically decried the horrendous  signing skills of the teachers. I told the story of the art teacher, a Mr Dumucious, who became a fill-in teacher of the deaf. Jovial guy as he was, he couldn’t even finger spell properly. There was no way he would have been able to support deaf kids in class. Yet there he was, employed as a teacher of the deaf.

I wrote the article because I wanted better opportunities for Deaf kids. It did not go down well at the school. I was the poster boy you see. The first to matriculate from the school or any Centre for Hearing Impaired Children. The principal of the time let me know what he thought of me for writing it. His choice of language was, shall we say, colourful.

My journey to matriculation was not plain sailing either. I left school twice. You see deaf kids were not supposed to be academic. They were supposed to work with their hands and in factories. The world of the Deaf professional was unimaginable. How would they communicate? How would they speak on the phone ? How would they satisfy consumer and client needs? Impossible! Factories and making things or simple admin work were the way to go.

The problem was that I was lousy with my hands. Luckily, perhaps, I was involved in a road accident when I was starting out as a cabinet maker. I had to get lunches for everyone on a colleagues bike. I would cycle to and from the local bakery with lunch orders. One day I foolishly pulled out in front of a motorcycle without looking while turning the corner. I was sent flying and broke my elbow. To this day I cannot straighten out the elbow. That was the end of my quest to make cabinets. I was lousy at it anyway, but at least it set forth a chain of events where I matriculated.

Matriculation brought with it the challenges of university education. This at a time in Australia when support for students with a disability was almost non existent. This is part two of my story – a journey to accessibility.

 

 

 

 

Up The Garden Path

Oh how I laughed when I first saw this video. It is a brilliant send up of all those emotionally manipulative videos that try to inspire us. You have little kid sitting on mums lap. Either they are turning on his/her hearing aids or their cochlear implant is about to get switched on.  The eyes of young kiddie light up. Mummy says. “I love you” and tears abound. The headline invariably reads, “Child hears I love you for the first time”

And people buy into this you know. They want to believe that miracles do happen. They want to believe that sad, tragic deaf kid has been fixed. Sad tragic deaf kid is now like everyone. NORMAL. They can hear and at that very moment their life just suddenly became enriched and worthwhile. Saved from the tyranny of silence.  How wonderful. Except it isn’t.

Now, don’t get me wrong, I am not anti-cochlear implant. Many of my friends have implants and love them. Golly, if they break down or are forgotten, for many of my friends this is akin to near death. There are many young people that I have worked with who have done wonderfully well with their implants. They have great language development. They are educated and confident. The implant is a great thing. Australians are rightfully proud that it is an Australian invention.

And we should celebrate this. It is a good thing. BUT – what we should not do is mislead. These videos of kids at switch on time are misleading to the extreme. It never happens like this. Switch on time is just the start of a long and exhausting process to learn how to hear with an implant. It does not happen straight away.

As a friend told me. The switch on is traumatic. It is traumatic because all you hear is noise. I am told that initially it is not pleasant. It is even irritating. For some the sound is so horrible that they burst into tears. For some it is a sound that they can not countenance and they do give up simply because they hate it.

For others it’s just the start of their battle to hear. It takes resilience, patience and hard work. When it works it is fabulous. When it doesn’t it’s frustrating, For some they feel like a failure. Their hopes raised so high and to not be able make good use of their implant after the pain of surgery, it is a very frustrating and traumatic thing.

Some kids grow to hate their implants and do away with them when they are adults. Some are bitter that they were forced to have the implant. I have known some so angry and bitter that they have had surgery to remove the device. As an interpreter friend told me once, switch on time is often one of shock and tears. It is not a time of joy.

For all these reasons videos like the one below are dangerous. They raise unrealistic expectations and, at worst, set people up to fail. They give parents a false hope and do not tell the story of the long hard slog to able to hear using the implant, This is just wrong.

As an advocate for deaf people over many years I have always wanted to ensure that people get accurate information so that they can make informed choices. Nothing offends me more than the hearing world promoting an idea that deafness is a tragedy.

Sure for some it is, especially latter deafened people who must learn to adjust. The onset of deafness can be socially isolating and lead to social withdrawal and severe depression. But Deafness is not always that way and it does not need to be that way. The experience of deafness is varied and for many a very positive thing.

For many years I have witnessed and had to work with language deprived young people who are deaf. I have had to work with language deprived adults as well. I have seen their struggles to be educated, get a job and to be involved in the world on an equal footing. It is a tragedy that really need not happen. It is not for nothing that the late and great Oliver Sacks described deafness as a preventable form of intellectual disability. (With apologies to readers and friends who will find the latter statement upsetting.)

Usually this happens because parents are given false hope that technology and hearing aids will provide all the answer. More often than not this is not the case.

Sure I understand hearing parents wanting their deaf child to be part of their world. I even understand Deaf parents of Deaf kids wanting their Deaf kids to be able to hear as well as they can so that they can be part of both worlds. But to ensure this happens accurate and realistic information needs to be shared. False hopes and media beat ups like the above video need to be avoided.

Recently Deafness Forum Australia, to my immense disappointment, shared such a video on Facebook. For an organisation that represents both Deaf and hard of hearing people to share such a video is unforgivable. Thankfully Deaf people and hearing professionals from all over Australia let them know how appalling it was to share such videos. Deafness Forum sensibly removed the offending video.

That they shared it in the first place tells me that the culture of the organisation is becoming increasingly audist. Indeed their Hearing Health campaign, needed as it is, is nearly all about hearing and prevention of deafness. This is why I am no longer a member, It disappoints me because as an ex-Board member I know that the Deafness Forum of old would never have countenanced sharing misleading information such as the above.

But realising their error they took it down so kudos to them for that. Let us hope that they have learnt their lesson and never again consider sharing such biased and misleading videos that are akin to hearing propaganda.

In closing I share  a comment of a deaf person to the offending video and post from Deafness Forum.

And that is the reality for many! Poor form Deafness Forum, lift your game.

The Power of Opposites

Many years ago, I had a coping mechanism for being deaf. The coping mechanism for being deaf was the power of opposites. This is basically a philosophy that dictates that for everything to exist it needs an opposite. Without an opposite there is almost no way of comprehending anything in life.

Let’s say that if we only had one colour in the world everything would just be a blur. We have different and opposite colours so that we can see properly, see the difference and in this way we are able to make sense of our vision. This is virtually for all our senses and understanding of the world. For large there is small. For fat there is thin. For loud there is quiet. For love there is hate and so on. All these opposites allow us to understand and appreciate meaning and life forces. They assist us to make sense of the world.

Deep, I know. But that was my coping mechanism. You see when you lose your hearing, and I did as a lad, it is devastating. You suddenly must adapt and adjust. Everyone suddenly treats you differently. As a kid friends began to tease me and even avoid me once that I became deaf. Your parents are stressed and worried. You become, suddenly, almost every topic of their conversation. You visit specialists and get hearing aids. Everyone points at your ear and says, “What’s that? You are made to feel different. It’s shit! That’s the best way I can describe it.

So, opposites? Well the opposite of hearing is not hearing. To understand hearing one needs to know what it’s like to not hear. So deaf is the opposite of hearing. All the shades of deafness and all the shades of hearing are necessary for us to be able to understand what hearing is and to comprehend what sound is. There is high and low pitched. There is sweet sound and grating sound. Fundamentally being deaf allows us to know that we actually can hear. My defence mechanism was simply that without me and people like me, hearing people would have no comprehension of hearing. It would just be a cacophony of senseless white noise is what I reckoned. My place in the universe was so that others could hear. I was, therefore, an essential part of existence.

Of course I didn’t think this deeply when I was 8. I was no super genius or anything. But when I entered adolescence, as we do, I began to think more deeply and try to make sense of what had happened to me. A lot of this was because of my dad who was an immensely spiritual and deep-thinking person.

My dad believed in god you see. I don’t. Not as he did anyway. I tend to think there is something out there, something awesome and mysterious. A power, a force – just a something – that led us to what we have today. I don’t know what it is. I don’t think anyone does or will ever know. Something was just there to start with, whatever it was. We humans cannot comprehend this because the opposite of something is nothing. The problem is if we had something there was never nothing. Paradoxically if there was nothing there was never something because something never comes from nothing. This makes no sense, whatsoever, to the human mind.

For my dad there was a god. Not a Christian, an Islamic one or anything really in the traditional sense of man’s concept of gods. For my dad there was far too much order in the world. Way too much order for anything to have just happened randomly.

My father explained his view to me many times. A minute has sixty seconds. Sixty minutes makes an hour. 24 hours makes a day. The earth revolves around the sun in that amount of time. To my dad this was well planned order. He knew that if the earth got slower there would be catastrophe.

Did you know, for example, a slowing down in the earth’s rotation could lead to average temperatures of 35degrees, oceans would expand, land would be lost, crops would be lost and there would be mega storms. Our very survival would be compromised. Indeed we would be in danger of being wiped out.

My dad he was fascinated as to how animals were all so similar. That they had a heart to pump blood, lungs to breathe, organs to break down food and so on. He was fascinated that there was oxygen and that without it or less of it we would die. He was fascinated that there was the right amount of oxygen in the air and that if this changes our very survival is challenged. This, according to my dad, could not just happen randomly. It was something that was designed.

To him there was no doubt that there was an intelligent being or force that created all of this. It could not have just happened, there was too much to chance.

And from my father’s teachings I developed my own philosophy of opposites. This ultimately allowed me as a teenager to come to terms with my deafness. You see these opposites were part of the scheme of things, they were there for a reason. They were not there by chance. They were there so that we could exist and be aware of our very being.

BUT – were these opposites created or were they just a lucky fate of chance? To me that was not the question. Opposites are there so that we know the difference and without them our existence would make no sense. In fact our senses would be in absolute chaos. As a young man that gave me a small reason to understand why it was me that was made deaf. Many times I have cursed the gods for my deafness, and still do, but my little opposites philosophy gave me solace in those moments of anger.

And you know it shaped my philosophy in life. It convinced me that I matter. It convinced me that my purpose in life was more than just being poor little deaf boy. My existence and my deafness was and is vital to our existence.

Look, people with a disability don’t just help people know that they can walk, hear, learn and see – they provide jobs and security to millions. Whether it’s through support or technology, if you take people like myself out of the equation the world will collapse – And not just because nothing will make sense but because millions will be without a job and an income. Believe me you need us in so many ways. We aint no burden buster, we are NEEDED.

And there ends your philosophy lesson for today. I thank my dad for my resilience and my approach to life. I suggest we all take a little page out of his book – Just remember, everything exists for a reason – and yes THAT MEANS YOU!!