Before I became an active member of the Deaf community I had known some deaf people
from school. I was supported in a Centre for Hearing Impaired from the age of 14. Before that my only memory of a deaf person was seeing two school boys at the movies with those old fashioned hearing aids. You know the ones with a wire that led to the aid that rested inside a specially sewn on pocket.

My first ‘real’ encounters with deaf people at the Centre left me puzzled. You see nearly all of them had poor English. I had lost my hearing around the age of 8 and had no clue of the struggles that deaf people had to acquire English or any spoken language. I had no clue as to what Auslan was. (This was in 1978).

The deaf kids at the Centre could not spell properly. They wrote in a way that was, at best, disjointed. It often made no sense. This triggered something in me. I wanted to know why. I wanted to prevent this happening. A person that was deaf did not have a disability that impacted on their ability to learn, surely?? Why were these young people illiterate??? I wanted to know. I wanted to know because the lack of literacy in these young people left them profoundly disabled. That was the view of my young self.

After I left school I became involved in the Deaf community. Firstly through the Deaf Youth group run by the Deaf Society and then through the Deaf cricket club.  From there I regularly attended the Deaf club every Friday night.

At the Deaf club I began to see the diversity in the language skills of its members. There were some who were extremely literate. God forbid, they even laughed at my jokes. But still there were some who were clearly illiterate. I began to see that many actually had poor language overall. Not just in English but with signing too. It puzzled me.

As my own signing improved and I began to converse with more deaf people I would note that many struggled with basic concepts and ideas. I would note that they lacked some maturity. Hell, I remember thinking at the time they were almost infantile in their development. Sadly, many actually were. It egged me. What was it about deafness that was causing these people to be so DISABLED?

Now I know many people with a disability and members of the Deaf community who are reading this will have almost fury on their breath. I can hear them now. “You’re making disability and deafness out to be deficit, Gary.” I say to them, hold your fury, for this was my thinking at that time. I was profoundly ignorant.

There is no doubt that my early experience of deaf people motivated me in my career. Originally I aimed to be a teacher of the deaf. I tried this via England and then Queensland. Three broken legs later I gave up the ghost and returned to Adelaide to study Social Work.

It was during this period that I learnt the most about Deaf people (note the capital D).  In Queensland, I struck up a friendship with a Deaf man. He was a native signer from a vast Deaf family. We had endless debates. Back then I thought everyone should learn Signed English. I argued that one uniform language was surely the way to go.

My friend became my mentor. He taught me so many things about the Deaf community, about its history and the richness of its language. I remember being amazed that his sister and brother in-law, both deaf, actually ran a cafe. He taught me about Gallaudet and the oppression of Deaf people. Through him I began to finally see how the system was ruining the lives of so many deaf people.

He didn’t just open my mind; he opened my anger. I could not believe what this hearing society was doing to young deaf people (Note there is no capital here.) It was depriving them of language. It was denying them their right to sign language. It was making them illiterate. Indeed, it was hindering the development of their life in almost every aspect. Be it language, education, maturity and the ability to form healthy relationships. No wonder that deaf people experience mental health issues at more than twice the “normal” population.

The one thing my friend always insisted on was that he was not disabled, he was Deaf. I didn’t get this back then. He couldn’t “speak”. He had minor problems with his English literacy. He needed interpreters. He needed lots of help. He had to be disabled. I told him he was in denial. I cringe at the attitude of my young self.

I began to see that my friend had two lives. He had his life in the Deaf community where he lacked for nothing. He had his language, family, friends and even his sport. His life was rich and full.

But he couldn’t live in the Deaf community full-time. He eventually had to interact with the wider hearing community. It was in the wider community that he was disabled. It was the hearing community that was disabling him. And this is the crux. Deafness is not a disability. It is a predominantly hearing society that disables the deaf.

I was to read later about the legendary Martha’s Vineyard in America. Martha’s Vineyard was unique in that it once had a large population of people who were genetically Deaf. At one time the majority of the people that lived there were either Deaf or related to people who were Deaf. Consequently it is apparent that most members of this community signed. In this community there was no disadvantage for the Deaf. It was a kind of Deaf Utopia.

But society is not like that. Society is hearing. Society does not like to adapt for minorities. Society expects minorities to adapt to them. So if someone is born deaf, the only answer is to make them hearing or as close to hearing as possible.

If you are born deaf no one asks the question; how can our society meet your needs? This question is not asked because we expect that people who are deaf to fit the NORM.

Perhaps we can ensure that a young baby has access to sound and sign. Perhaps we can adequately fund programmes so that they can support the deaf child to be part of the family through sound and sign. Perhaps we could insist that every child, in every school learn Auslan so that if they encounter a person that uses Auslan they can communicate. There are solutions.

Perhaps we could ensure that every video that is placed online has captions. Perhaps every educational resource must, by mandate, be accessible. Perhaps every hospital should have a link up to a service that can assist them to communicate with people who are deaf by sign or by captions. This would be a society taking the disability out of deafness.

Perhaps we can insist that every teacher of the deaf have the skills to be able to communicate with every deaf child in whatever mode. Perhaps we can insist that every deaf child have access to a program that will provide them with knowledge and skills to live life as a deaf person. In short, we adjust the society so that the disability does not exist.

But no! There is only one answer that the majority of people will buy into. And that is that we all must hear. There is no other condition that is acceptable. If by chance the attempt to make people hear fails …. well we will throw a few tidbits their way. Just to make it a little more easy. Those tidbits will be the absolute bare minimum.

The result? Well, we still have deaf kids struggling with the English language. We still have deaf kids and adults socially isolated. We still have services totally inaccessible so that deaf people are at risk. We still have a society that expects everyone to fit the norm and bugger the consequences. This is society disabling the deaf.

It is not just the deaf that society disables. It is every person that has a “disability”. Where I used to work there is a long section of tram stops that have all been raised so that wheelchairs can get onto the trams. There are crossing lights so that people can safely cross to the tram stops in the middle of the road. There are ramps so that wheelchairs can access the stops. There are sound alerts at the crossing lights for vision impaired. YES – people are finally thinking access, except – all the trams that service these accessible stops are the old type that have steps. And then when you arrive at my old work, you access it through a subway which is accessed … by steps. It is not the “disability” that is the disabling; it is the profound lack of foresight that exists in our society.

People don’t have disabilities. They really do not. We, the society, disable them. We, with our obsession with normalcy, expect everyone to fit in with the norm. And that’s how we are Disabling the Deaf .

(And just about every other person that has a physical condition not considered the norm.)

 

 

 

 

 

 

 

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In a land far away live a benevolent people. They are free and fair. They embrace every person. They embrace any idea, be it good or bad. They embrace any view, however contrary. Eight years ago they gave a black man a go as the leader of their LAND. Can you imagine that? A BLACK MAN!!!! Just recently, to show how very fair they are, they gave people a choice to elect their leader. The choice was between a woman and, get this, an ORANGE MAN! – A WOMAN and an ORANGE MAN!!! How awesome is that??? Spoilt for choice to show how free and fair that they were they chose the ORANGE MAN! The woman would have to wait. But hopefully not for too long for they are a fair and free people. That is OK, they had shown then world that a person of any colour could be their leader.

As it was announced that the ORANGE MAN was to be their leader the people of this Land rejoiced. Men across the Land were particularly happy. You see the ORANGE MAN had professed his love of the ladies. He had professed that he loved them a lot. He professed that he liked to touch and squeeze them everywhere, all the time and any time. And men around the Land were happy because they were free to love and touch women as they pleased. What a Land they lived in. It is so free and fair. ( When you’re a star they let you do it. You can do anything. Whatever you want. Grab them by the pussy.)

And the people of the Land were safe. They were safe from the nasties on the outside. Those pesky outsiders. The people of the Land were free you see. Free to hate everyone and everything that did not exist within their Land. “Ill Keep em out” said the ORANGE MAN. And he was clever, oh the ORANGE MAN was clever. Never had someone so clever been their leader before. The people were in awe of his wisdom.  “I’ll build a great wall.”  said the ORANGE MAN. “And nobody builds walls better than me, believe me” And the people cheered at his humility. But the ORANGE MAN was not just humble, he was a financial genius, “And I’ll build the wall very inexpensively.” So inexpensive, in fact, that the Land was not even going to pay a cent for this great wall that would protect them because,  “I will make Dajano pay for that wall. Mark my words.”   The people wept. How had they got so lucky.

But the ORANGE MAN was not finished. You see he had ideas never thought of before to protect the people of the Land. They were sophisticated ideas. These ideas would protect the people of the Land from them bad men that were terrorists that lived in the middle lands of the world. The level of sophistication was simply astounding. The ORANGE MAN lifted his arms to the heavens as he screamed to his people the solution to their world safety. “Bomb the shit out off them!!” is what he said! The people of the land cheered and hugged each other. They would be safe forever!

The women folk were in raptures. They smiled at the thought of being loved up by their men folk. They smiled at the thought that this might happen at any time and at any place. Just as long as it was by the men of their Land. God forbid if those pesky IMMERGRENTS should try to love them up. That would not be OK! But they need not have feared any such thing happening to them. You see the ORANGE MAN had the answers to that too. The Orange man was furious. You see Dajano was sending all their bad people across the border. The ORANGE MAN screamed his rage at the fact that Dajano were, “ …sending people that have lots of problems” to the Land including rapists, drug runners, and other criminals.” But the women folk need not have worried because that great wall was gonna save them. Failing that the ORANGE MAN would bomb the shit out of em anyway. They had nothing to fear.

Goodness the ORANGE MAN was good. You see the ORANGE MAN, despite having zillions of dollars, had only ever paid a little bit of tax. When asked if it was bad that he had hardly paid any tax the ORANGE MAN laughed. “Hell no!”, he said, “That makes me smart.  And anyway even if I did pay taxes the money would have been squandered.” The people of the Land laughed at his wisdom and wit. Perhaps they too would not have to pay taxes, cos it would be wasted anyway. They marvelled at the fact that even though they would not be paying taxes the Great Wall would still be built. Cos the ORANGE MAN was gonna make Dajano pay for it anyway. Life is good. OH yes, LIFE IS GOOD!

The ORANGE MAN was funny too. He even made fun of the disabled. He called the most famous Deaf woman of the Land retarded. He even called her mentally handicapped and mocked her deaf speech. And the people of the Land laughed and laughed. Not only was the ORANGE MAN smart, he was so, so very funny!  So all over the Land people copied him. After all if he could do it, so could they. All over the Land the people began walking up to people with Cerebral Palsy and doing the spastic dance just like the ORANGE MAN. They had never had so much fun, EVER!

And most of all the people of the Land were thrilled that they could hate! They were allowed to hate and deride. Because they were free. The ORANGE MAN was leading the way in showing how they could hate. So Whites were telling people they thought were not white enough TO GO BACK TO THE FIELDS.  Deaf people signing in Cafes were told to get their retarded selves out and go elsewhere by other customers. Everybody nodded sagely at the righteousness of this. After all the ORANGE MAN did it and so could they!

what a LAND. How lucky are they??? Land of the free. God bless them all!

I commenced work with the NDIS in July. In this very short time, my eyes have been opened in a way that I would never have imagined. I am an experienced disability advocate and thought that I knew a lot. To be fair, I am very experienced but the NDIS allows you to see, first hand, the real lives of people with a disability and their carers. To be frank it puts a lot of things into perspective.

I am Deaf and I have fought for a lot of things over the years. Interpreting at university, the National Relay Service, cinema captioning, mental health, education, employment and basic human rights are  just a few of the things that I have campaigned for over the years. Often I do it through my work. I just constantly raise the issues and create awareness. I think in deafness we have made enormous inroads compared to 20 years ago. Technology has helped immensely to even out the playing field. Indeed I owe most of my current success and my current job to the fact that this technology exists. I, and many other people who are deaf, have been extremely fortunate.

Of course we are never happy. We always want more. We compare ourselves to countries like the USA and we want comparable access. And we should never stop striving for this comparable access. Australia is a rich country and can afford it; it is our right. To paraphrase Oscar Wilde, “..He who has fought a good fight has had to face every difficulty except popularity.”

I used to be angry about many things but since starting work at the NDIS I find myself less angry. Many friends of mine who have a disability won’t like me saying this but of late, I have begun to realise just how lucky I am. I will explain this a bit more later. I find that I  just cannot get angry about some of the things I was previously angry about. The sale of Townsend House in South Australia is an example.

Townsend House is an iconic, somewhat creepy building, that is steeped in history for the Deaf community in South Australia. It stands on land that is a real estate goldmine. It is in the much sought after suburb of Brighton in South Australia, just minutes from the beach.  It once hosted a school for the deaf and many Deaf people in South Australia have fond memories of going to school there. I dare say  that for many the memories might not be so fond, but nevertheless Townsend House is an important part of the history of the South Australian Deaf community.

The response to the sale of Townsend House has been particularly muted. It was nothing like the response to the sale of the Deaf Community Centre at 262 South Terrace in Adelaide. The sale of 262 caused great hurt and anger in the South Australian Deaf community, and rightly so. It is a little different from Townsend House. The Can Do Group that resides within Townsend House acquired 262 by default. They saved the Deaf Society at a time that it was about to go under. The CEO of the time and the president of the Deaf society promised 262 would never be sold. But of course it was. In the process the heart of the Deaf community was ripped out and very little of the profits of 262 were returned to the Deaf community. It was, to put it mildly, disgusting.

The land where Townsend House is built has been sold. Unsurprisingly, the Deaf community were not consulted. Indeed you would be hard pressed to find any Deaf people that ever go there now. To be frank it is now just a building that has history and the Deaf community have little and next to nothing to do with it. So it was sold. Not many were angry, not many protested. There were pockets of dissent that had the impact of a pea-shooter. For myself, I just saw it as perfectly sensible business decision that Townsend House have made to ensure their continued survival.

The sale of 262 was also a business decision but it was a little different. It was different because the Deaf community had a real stake in 262. The Deaf community were heavily involved in the establishment of 262. I have seen beautifully handwritten records, written by deaf people, of the fundraising that they did to build 262. In short, 262 was built by and for the Deaf community. They valued 262 in a way that they just don’t in regard to Townsend House. I believed then, as I do now, that it wasn’t necessarily wrong to sell 262, but it was wrong to do it without the full and proper consultation with the Deaf community. I believed then, as I do now, that the Deaf community deserved a fair share of the profits of the sale of 262. They got nothing except a Deaf club in Modbury, with no assets for its upkeep and at a place that is almost inaccessible to the majority of the Deaf community. How the Deaf community was treated in that instance was a disgrace. They were ripped off.

Not so Townsend House. Even though it has history, it is just bricks and mortar. It is no longer a Deaf organisation. It is an organisation that supports children who are Deaf, hard of hearing, Blind, vision impaired, deafblind and other disabilities. The sale of Townsend House was simply a decision that will allow these individuals to still receive support. It also allows Townsend House to position itself as an NDIS provider. It was a business decision, pure and simple.

Until this year I might have been angry about the sale of Townsend House. But I am not. You see working within the NDIS, you see things with a different perspective. You see people with a disability barely surviving. They have minimal support. They are living below the poverty line. You see carers who are looking after kids with very profound disabilities, often more than one child with a disability. You meet them and you begin to discuss the support that they require. You know what? Many of them ask for the bare minimum. It does not matter that you outline to them what might be reasonable and necessary. They still only want the bare minimum.

As an advocate who has spent his working life demanding more and never being satisfied, this is profoundly humbling. Do you know what some of these carers say when you point out that they might be able to get more support? They say,  “No, it’s my child, that’s my job.”  Even when that “child” happens to be in their 30s or 40s. These parents are waking every morning to dress, shower and feed their “children”. They are often also dealing with severe behavioural  issues that require them to be on alert at all times. Yet still they ask for the bare minimum.

That’s the definition of unconditional love! That was my dose of perspective!

 

Resilience is, of course, necessary for a warrior. But a lack of empathy isn’t.

Phil Klay