Pauline Hanson is not all wrong!

Pauline Hanson is a repulsive being. There is no other way to describe her. She is racist and ignorant. Most recently she described disabled kids as a hindrance to the education of normal kids that want to, “.. Get ahead in leaps and bounds.”  You see our Pauline, that upstanding Australian, believes that kids with disabilities get too much attention from teachers and therefore other kids are neglected.  A lot of attention has been focused on her mentioning Autistic children but she actually was referring to all kids with disabilities. Said our Pauline, “… teachers spend too much time with autistic children and children with disabilities to the detriment of other students.” (Taken from the Courier Mail)

Pauline claims she has been taken out of context. She claims it’s not that she doesn’t want these disabled kids educated but rather that they should have special classrooms or more special schools to look after them. This is so the other kids don’t have to suffer them obviously.  Inclusionist have had a field day with her.  They say that since the 90’s the philosophy of inclusion has changed education for the better. (Paraphrased from The Guardian)

I want to address the elephant in the room. As much as I hate to say it, Pauline is not all wrong.  Nor are the inclusionist all right.  In fact one could argue that inclusionism, as it relates to education of kids with a disability, has failed many of them.

Inclusion, according to the Oxford Dictionary is, “….the fact of including somebody/something; the fact of being included.” Unfortunately that is how the education system defines disability inclusion. If they are there then they are included. Of course this is far from the case. Inclusion can be the most secluding thing ever for a person with a disability.

Over almost 30 years in the disability sector I have seen some horrendous things in the name of inclusion. I remember an organisation I worked with enrolled a deafblind girl who was 22 in a walking group. Problem is the youngest in the walking group was about 70. They would walk and she would follow. They would eat and talk and she would just eat. She never said a word to them nor they to her. But she was included so that was ok. Right?

So many times I have seen disabled kids in a school setting. Of course they are mainstreamed but at lunch they sit alone. In group discussions they say nothing and are ignored. When work needs to be done they are taken away into a room with the teacher aid and given a book to colour in. They might be teenagers when this happens.

Back in 2011 I was asked to observe a young deaf girl in her classroom. Her mother was worried as the young deaf girl seemed depressed and not happy with school. The girl was mainstreamed and had a class interpreter.  In the morning the kids sat down at their table. It was Monday and they were to write about their weekend.

Diligently the girl began writing about her weekend. The rest of the kids were all chatting with each other and sharing their stories. The girl watched them. You could see her anxious glances around the table. She was wondering what her peers were talking about and the interpreter did nothing. Later they went for story time. The interpreter would interpret the teacher telling the story. The teacher would ask questions and the kids would answer. For some unknown reason the interpreter didn’t interpret the answers from the kids. This meant that the girl had no access to peer learning.

I later wrote a report outlining what was happening and how the school could facilitate better inclusion. The school refused to acknowledge the report. The interpreter apparently threatened to resign because she felt insulted by the report. The school were angry claiming that I did not understand classroom dynamics. I guess that sometimes the truth hurts. Inclusion was clearly failing this girl.

And I remember being a teacher aid for a couple of young  deaf aboriginal people. In the morning the home class got together and then got to work. When they got to work I was asked to take the aboriginal students to another room and teach them. I was virtually their teacher. They would take part in sport and excursions and sit with me the whole time.  As soon as we returned to the class I would be asked take them into a room and teach them. Is this what we call mainstream education?

And then there was Charlie. He was a five year old in a classroom. Story time that day was a story about animals. The teacher read this innovative picture book to the class. Basically the book allowed the teacher to flip tags that had parts of various animals and create bizarre creatures. The creature might be a mix of crocodile, kangaroo and wombat. A Crokanbat. The kids loved it.

The little deaf guy didn’t have much speech to write home about but he was excited about the Crokanbat.  He got up and pointed while squealing delightedly. He clearly wanted to know what the creature was. The teacher shushed him and when he refused to be quiet removed him from the class and made me take him to the library. Yes this actually happened. His questions unanswered. His language learning opportunities lost. His soul destroyed.

I am sure there are success stories out there where inclusion works really well. But when it does not it is a disaster. It is soul destroying and I am sure it contributes to poor self-esteem and mental health issues later in life for many of these kids with a disability.

And this happens because the system is horrendously under-resourced. Teachers are expected to be a Jack/Jill of all trades. They are expected to deal with a class and also support kids with disabilities too. Most are not trained in disability and get minimal support from visiting teachers and minimal support from teacher aids. It’s not that inclusion is wrong, it is that the system just does not provide the tools nor the funding to make it entirely successful.

I don’t like segregation either. I would rather the system provide the level of support that it needs top to make inclusion a success. The reality is that it does not and it is the poor teacher that is expected to do it all. It is a recipe for disaster and often is.

As abhorrent as Pauline Hanson’s view are she is not entirely wrong. The system needs to change and it needs to be funded properly. As it stands, at this very moment, inclusion in schools can be the the most secluding thing ever for many kids with disabilities. It is doing them great harm.

So hate Pauline as much as you want but the end of the day she may have done us all a favour bringing the issue to the table. Our job is to keep it there and highlight all that is wrong with inclusion policy in education and everywhere.

A Precious Resource

You know that since I was at secondary school I have actually been receiving a lot of my information second hand. This is because I have had to rely on interpreters, captioning or note-takers to get my information.  I have to put an enormous amount of trust in the person that is supporting me. If they get it wrong, I get it wrong. If they don’t understand, I wont understand. If they pick and choose information that they think is relevant and exclude stuff they think is not – well I have to hope to high heaven they are good judges of information.

At school I had note-takers. This was BC – Before Captioning. The teacher might sign somethings to me in crappy Signed English occasionally but  mostly I relied on their notes. So in class the teacher would jot down the important information. If there were discussions happening in the room I generally got no access to that cos the teacher didn’t note this. In that sense I had no access to peer learning. So what I had to do was learn based on the information my teacher/note-taker thought was important. I passed somehow, not sure how but I did.  I was apparently the first deaf person to matriculate from a Centre for Hearing Impaired in Adelaide. This was in 1983.

It’s true I barely passed but no matter. I was a shit student. There were more important things in life than studying endlessly – soccer being one. But nevertheless I passed on what was really very limited access to information and what I could garner from my own limited reading. Looking back, that’s a  huge achievement.

So after secondary school I decided I was going to be a teacher. A teacher of the deaf (TOD). I reasoned that I would be good at it. After all, who understands deaf people better than deaf people themselves? I remember when completing my last year of school I nominated a number of courses. Parks and Recreation was one. Aboriginal studies another. Teaching was my priority. I was accepted into all of them but chose teaching. I wish I had chosen Parks and Recreation now. Being outside all the time in the wilderness has an appeal. But I reasoned at that time that Park Rangers communicated by two way radio and it would be too hard.  Whoo boy, how I and times have changed.

So I started teacher training at the Salisbury College of Advanced Education. I attended for six weeks or so and sporadically at that. This was 1984 and disability support for tertiary education in South Australia was non existent. I had no note-takers and no interpreters, nothing. I didn’t learn much. Correction, I didn’t learn anything. If this experience taught me anything it was that access to at least some information is better than no access at all.

After six weeks I found out that there was this university in Durham (England) that provided support to deaf students. They had a teacher of the deaf course so I went out and bought me a plane ticket, wrote them a letter and left for England. All before I even knew if I would be accepted or not. Meanwhile I didn’t even withdraw from my course in Adelaide, I just left. No doubt the record reads FAIL somewhere.

So away to England I headed , got myself an interview at Durham, got myself accepted and found out that I didn’t have enough money to afford the fees. No doubt there were grants around I could have accessed.  But the Red Lion up the road and the English Deaf community had more appeal. In short I was too busy having a good time.

Meanwhile in Australia Mum and Dad were besides themselves and trying to find money from the Australian Government to fund my studies. While they were on their hundredth phone call I was probably downing a pint while chatting to some attractive deaf woman. Mum and Dad even got in the newspaper. I still remember their serious faces in the article photograph while holding up a photo of me smiling broadly. The gist of the article was that I was deaf boy wonder trying to make good in England and abandoned by the Australian Government.

BUT mum and dad’s efforts were not wasted because they found out about a teacher of the deaf course that was being set up by the late and great Dr Des Power in Brisbane. So I flew back to Australia and before I knew it I was on my way to Brisbane to study. Dr Power was way ahead of his time. He got funding for interpreters and note takers so that Deaf students could access the course.

It was perhaps the first time that I had close to full access to information. I say close because I was till learning Auslan at the time so I didn’t really have full access. The supply of interpreters was also a bit limited. I was the student that had to do without when interpreters were in short supply. I spoke well, you see. So when interpreters were in short supply they were prioritised to the students that were full signers and didn’t speak so well.

Again I wasn’t the best student. I lived at the University Halls of Residence. It was brilliant but also distracting. Beer, social functions, pool tables, table tennis, ready access to the city and night clubs – Well it sure beat being stuck in a dingy little room studying all night.

I generally did OK. I once had an all night study party where we studied for an exam that was at 9 am next day. We had started at 7pm. We had beer, a couple of breaks to play cards, ordered pizza and ribs. Naturally we studied a bit. We finished at 7am next morning showered, had breakfast and went to the exam. How I got a credit for it I will never know.  I reckon that the access that I was being provided played a large part in it.

BUT, alas, along the way I broke my leg three times. I got a bit depressed about that. I was trying to imagine myself in a room with 30 screaming kids, five days a week, for the rest of my life. That was even more depressing than the broken legs. So I upped and left back to Adelaide and enrolled in a Social Work course.

I went from Queensland where I was spoilt for access to Adelaide where I had none. Although support was promised, it was never forthcoming. I actually had to stand out in front of the class and ask students to help me by sharing their notes. This struggle went on for six years until I graduated.

I fought and fought for access including meeting with the Education Minister. I appealed and wrote countless letters to the Vice Chancellor explaining my difficulties. It was not until my final year that I got access to interpreters. And even then I had to fight lecturers to allow the interpreters into their classrooms. Believe me when I tell you that I value all the support that I can get. I’ve worked hard for it and earned it.

So over the years I have used interpreters and captioning in a variety of situations. Work, recreation, training, study, medical and social gatherings. I am always thankful for the interpreter and captioners. I do everything that I can to make sure they have optimal conditions so that they can interpret or caption to the best of their ability. I make a point in giving opportunities to young interpreters so that they can upskill. We all know that there is a lack of supply. If us deafies don’t take some responsibility to upskill the interpreters who will?

My respect for interpreters is immense. When I use them I take control of the situation. I try my hardest to stop people talking over each other so as to make sure the interpreters job is easier. If they have optimal conditions then I get optimal information. I make sure they have breaks. I am patient when I know a speaker is difficult or speaking too fast and will often ask speakers to slow down. Interpreters know that they can tell me when a situation is hard and I will try to rectify it. Good interpreting and translation is a team effort.

I have been at the bottom in terms of access and now I am at the very top. I know that interpreters (and captioners) are a precious resource that need to be nurtured, encouraged and supported. Criticism of interpreters worries me. It’s not that interpreters should be immune from criticism because its only from criticism that they can grow. The problem is that often this criticism is unfair and unrealistic.

I am well aware that interpreters must be good. They are often in situations where people’s futures or lives are on the line. Because of this they sometimes have to take control. This means that they sometimes have to tell people to repeat things. If this slows down the process then so be it.  They sometimes have to ask deaf people to finger-spell more slowly.  Their job is one of immense responsibility and accurate translation is crucial. For this reason if a Deaf person says to me that interpreter X was crap because they asked them three times to slow down their finger spelling I’m likely to go into battle for the interpreter rather than the Deaf person. Sure, its not ideal but accurate conveying of information must be the goal at all times.

Interpreting is a limited market. I would love for them all to be brilliant here and now. Bottom line is there are many that need years to get to the level that we deafies, especially professionals, desire. For that reason we have a responsibility to lower our expectations a little, support interpreters more and help the market upskill and develop.

If an interpreter is struggling with finger spelling now it is only through constant exposure that they will get better. So if they say slow down – just do it, even if you are a big wig academic. Otherwise our lofty expectations may create a world where only the best survive and there are even less to serve the market than there are now. I’ve been there and I have no desire to return.

Death …. deaf … and other thoughts.

By and large death is a good thing. Without death our world would be so horrendously overpopulated that we would long ago have destroyed the earth. I mean we humans are doing our best to destroy it anyway but because of our friend death we have survived this long. You see death has a purpose. That purpose is not just so that we don’t overpopulate but it is also so that others may survive. When an animal dies it decomposes. The decomposing leads to nutrition in the soil that feeds plants, that feeds us and feeds other animals. It is the circle of life as they say. It is a truism that the demise of an animal, be it human or otherwise, is another animals gain.

Yet we humans are obsessed with staying alive. I understand that we have to survive for a certain amount of time. If death happens faster than life then there will be no life left. There has to be balance. Likewise if we are staying alive at a rate that is so much greater than death then the resources of the world cannot cope. Humans know this. We hear all the time that a certain animal is breeding at such a rate that it needs to be culled because it is killing itself and there is not enough food to go around. Kangaroos, koalas, rabbits, wild horses and so on have all been subject to culls. Of course humans would never consider culling themselves but the Chinese tried a one child one couple policy. The forced abortions and sterilisation that followed, as well as the persecution are just some of the many shameful examples of mans inhumanity to man.

I have had great cause to think about death lately. Recently my father died and some good friends have passed this year too. I am a fatalist and accept death for what it is. I sometimes think humans should concentrate more on alleviating pain rather than the obsession with prolonging life. Of course it is a fine balance. If there is a disease that is going to make us all perish so that there are no humans left then of course we need to find a way to beat that and survive. But if our obsession is just about staying alive forever then we are not doing ourselves or the world any favours.

My father believed in god. He did not believe in god in the traditional religious sense of heaven and hell. He believed that the world had far too much order to have just been created randomly. He could not fathom that some randomly colliding particles led to everything we see today. He believed that the world had a delicate balance that  needed to have been worked out and planned. Whether this was by a God or some other supernatural power he did not know. But for him there had to be something. In that sense he was a profoundly spiritual person.

And death and life, I guess, are part of that balance. It is a delicate balance too. We humans are so selfish and so besotted with living that we fail to see this. We fear death far too much and need to really understand its purpose. For my father his death was timely. His body had worn out. Death was welcome for him as it alleviated his pain. If he had a choice he would have liked to have controlled when he died rather than just fading away and suffering as he did. But, alas, death as it relates to humans is far too complex for that.

I was protected from the worst of my fathers suffering by the tyranny of distance. My father lived in South Australia and I in Melbourne. While I saw him as often as I was able his care was with my mother, sister and my sisters family. They provided for him in every way that they possibly could. He was very lucky indeed.

That is one of the positives of death and suffering. Mainly that it mostly brings out the best in people. When people are sick and in pain by and large people rally around. They offer support be it morale or a simple cooked dinner. They show that they care in a way that they probably didn’t in times more sedate. My father would have known that he was loved. I think he held on as long as he did because he felt that love and cherished it.

My father and I had a complex relationship. It was complex because it was built on empathy. You see, he and I struggled to communicate. I was deaf and he a mumbler. He was so very hard to lipread. My mother and my sister would be my interpreter, particularly in the later part of his life. My kids would also interpret for me. My son Tyler assisted me to communicate with my dad for an article I wrote about his life. At the  end my eldest son was there to interpret  for me when he was near death. I am grateful for their assistance.

I am often angry that deafness deprived me of what one might call a normal relationship with my dad. When I was young and before I became deaf he and I had many great conversations. We talked about religion, politics, football, cricket and life. He was the one who told me to defend what I saw as right. He said never take a backward step and stand up for myself. He told me many a joke and my children still suffer these jokes. Even when I lost my hearing we still managed to communicate. He would gesture, write in the air or on his palm. He never gave up.

But as he and I got older we became less tolerant and committed to communicating with each other. We relied too much on others, or mostly I did. Consequently we communicated less and less. But we understood each other in a way many people cannot. A nod, a look a shrug of the shoulder or a raising of the eyebrow was all it took. Towards the end when he could not get out of bed any more I shook his hand. It was a typical strong hand shake. He held on just a little bit longer than normal. Just his way of saying, this might be the last time, acknowledging me and letting me know he loved me. It’s more than words can do.

But even so I get angry sometimes. I wish I could have just sat at the end of his bed and talked. Asked him  where it hurt and what he wanted me to do. Or simply have a chat about life and stuff to distract him from the inevitable. But we could do none of that. We just had to settle for assistance from my mum, a nod  a look and that firm handshake. I wish it could have been more. That it was not pisses me off often. It is one of the really cruel things about deafness – It isolates.

That my dad is dead is not something that worries me so much. Death is needed, inevitable and often good. That my deafness prevented me from knowing him better, well that is harder to come to terms with. Such is the way of death and deaf.

Dear Gino and Al … I want cinema access!!

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AN OPEN LETTER TO GINO MUNARI, General manager  for film buying, Village Cinemas and Al McEwin, AUSTRALIA’S DISABILITY COMMISSIONER AT THE  AUSTRALIAN HUMAN RIGHTS COMMISSION.

Hi Gino and Al

My name is Gary Kerridge. Al and I are well acquainted. Gino and I a little less so. Though we did meet many moons ago in Canberra at a Cinema Access Advisory Group meeting.

Gino, I saw recently your response to Dean Barton Smith. Dean had written to your CEO about cinema access, or more accurately, the lack of it.

I noted you blamed the suppliers for providing dodgy and unreliable technology for captioning. Blastard suppliers!!! You would think they would have quality controls … but hey we are only deaf, what do we matter.

It made me revisit those heady days back in 2010. Remember that Gino and Al? Those were the days.

That was back in Shorten and Innes time. They negotiated a deal with the Big 4 cinemas. Remember that Gino?

We were to have a trial of Captiview. You know, try it and get feedback as to whether it was any good. If good great. If not … well back to the drawing board.

But that didn’t happen Gino and Al. Those clever people at the cinemas decided to roll it out fully anyway. I don’t know why because initial feedback about the technology was that it was terrible. Mind you, not your fault Gino, it’s those blastard suppliers.

But anyway, Gino and Al, we all had such high hopes you see. Because there was an agreement that would bring wonderful and previously undreamt of access.

Remember that agreement Gino and Al? If you have forgotten here is the agreement. https://www.dss.gov.au/sites/default/files/documents/05_2012/cinema_access_implementation_1.pdf

Let’s recap. By the end of the agreement in 2014 the Big 4 cinemas would have 242 screens providing access. Wow!!!

And you know cinemas with 6 screens would have at least one accessible. Over 6 screens and up to 12 screens would mean at least two were accessible. If there were more than 12 screens then three screens would be accessible. Just wow when you consider before that we were lucky to get one a month.

But wait – here is the best part. By 2014 every screen that was equipped with captions technology would show captions at every session. Pardon me if we felt a bit like kids in a lolly shop.

So Gino and Al – what happened? It’s now 2017. At Chadstone today I can see Beauty and the Beast is captioned  at four sessions and that appears to be it. Chadstone is huge, what’s happening at all the other accessible screens?

And you know, Gino and Al, even when access is given it often fails. Batteries are flat on technology. Captions drop out. Captions are not received. If you wear glasses sometimes you have to take them on and off to see captions and movie alternately. Tall people have to slump cos the Captiview designers thought all deaf people were short. It isn’t a pleasant experience. In fact it’s awful. Watch this video if you don’t believe me. 

But it’s those blastard suppliers isn’t it Gino. Shocker.

And you know, Gino and Al, the cinemas received a grant to help with the roll out. What was it $480 000 or something. Despite your protestations, Gino, of extensive capital outlay by the cinemas the tax payer contributed. And very little of what was agreed appears to have occurred. Given this, Gino, will the cinemas pay it back. Or perhaps get those blastard suppliers to do it for dishing out, well, Craptiview.

And in closing, Al, given the cinemas have clearly not held up their end of the bargain, they appear to have broken the law. SO – what will the Australian Human Rights Commission do about it?

Yours in the Hope of Full Access

Gary

Lobotomy!

I read something today. What I read took me back to the 1880’s. It made me think of the Milan conference. This is a famous conference held in Italy where some arty farty, know nothing hearing experts decreed that deaf people should never be given access to sign language. They were to be educated orally forever after. Signing was sin, almost akin to murder and was bound to send them all to hell. I mean, god forbid, how do you sign things to do with sex. It would just be way, way too RUUUUUDDDE.  If you want to know more about Milan  read this link – https://www.verywell.com/deaf-history-milan-1880-1046547

That dreadful conference was to put the lives of deaf people back a thousand years. It took over a century to undo the damage that the recommendations from this conference did to deaf people. It led to generations of deaf people who became virtually language-less and illiterate. We in the deaf community have all heard the horror stories where deaf kids were caned for signing or for using gestures. We have all heard of the stories where deaf kids were made to sit on their hands. If you want to see what it was like, and is often still like, watch this video. (Note the anti-sign language bias.)

I really thought that today, in 2017, we were over it. I thought we had moved into an age where we had learnt from our mistakes of the past. I thought we understood that we had screwed up the lives of generations of deaf people and that we would never go back there and then I read this:

“The cultural resistance definitely stems from low expectations that teachers have of students with disability and that stems from a lack of teacher training. That is probably one of the most critical areas. We all talk about training as a broad concept but there are some really specific things that I think teachers need training around and they may seem obvious at first to teachers but they are actually very specific around students’ disabilities. A lot of teachers do not know that for students who are deaf, for example, those students actually do not really need visual materials to support their learning because it disenables that student from focusing on what the teacher is actually saying and it is quite distracting. There are specific types of training the teachers need around different types of disabilities that are imperative. As I said, without a knowledge of those sorts of things teachers do not expect much of students with disability because they do not understand disability.”

I had to read this several times before the reality of this statement actually sank in. It is fair to say that I spat out my coffee. I thought it was from some ignoramus who had no clue. Indeed the person is an ignoramus. In fact ignoramus is too kind a word. What is worse is that this person, an aptly named Ms Lobo (have fun with that one), was representing the National Disability Services (NDS) in a submission to the GENERAL PURPOSE STANDING COMMITTEE NO. 3 STUDENTS WITH A DISABILITY OR SPECIAL NEEDS IN NEW SOUTH WALES SCHOOLS.

Statements like this scare the shit out of me. They scare the shit out of me because the NDS are a peak body that have much standing with the Government. They represent service providers and provide the government with high level policy advice on the service and support needs of people with a disability. And they said this ….

Let us for a moment dissect that statement. Deaf students …. “  …. actually do not really need visual materials to support their learning because it disenables that student from focusing on what the teacher is actually saying and it is quite distracting.”

Now “visual materials” – What are they? Auslan interpreters? Sign language? Captioning? One assumes that Ms Lobo- – – – is referring to these things. And these things are the very things that people who are deaf need to be able to communicate, understand and participate. Not only in education but the whole of the community.

Ms Lobo—- has said, to a high ranking enquiry, while representing a highly influential organisation, that these things, “disenable that student from focusing on what the teacher is actually saying and it is quite distracting.

What Ms Lobo _ _ _ _ is saying, in essence, is that deaf people just need to watch very closely the speaker, without support, learn and participate. So they have to listen with limited hearing, lip-read and somehow be equal participants. Because if they have any visual assistance then it is, in her words, “..quite distracting.” Well thanks Lobo.

So pardon me if I am seeming to be over dramatic but isn’t this exactly what the Milan conference recommended? That visual means like sign language be eliminated and that deaf people were to communicate and receive instruction only orally and be expected to lipread everything. And that by doing so they would all become better listeners and lipreaders. Was that not the gist of it? Ms Lobo- – – – wants us to go back there even though generations of deaf people were destroyed through these methods.

And then somehow teachers that use visual means like captioning or sign language do so because – “ .. teachers do not expect much of students with disability because they do not understand disability.” In short, teachers that use visual communication means do so because they have no clue. OK! Now that makes complete sense!

Now people go forth and let people who support clueless statements like this know and let the NDS and Ms Lobo know just how clueless that they really are!

If you want to see the comment in all its shining glory its on page 71 – https://www.parliament.nsw.gov.au/committees/DBAssets/InquiryEventTranscript/Transcript/9901/Transcript%20-%203%20April%202017%20-%20UNCORRECTED.pdf 

 

Severity is a Dirty Word

The NDIS began in 2013 to much fanfare. It was to be the saviour of people with a disability. It was to provide the care, the support, the technology and the wherewithal for people with a disability to be active members of the community. What is more, by investing in people with a disability it was to create jobs and opportunities. More importantly it would allow people with a disability to be active economic contributors to society. There would be a significant return for the investment.

But in the Australian today, if you are to believe Rick Morton, the NDIS is in free-fall. According to Morton the NDIS is becoming unsustainable. He states that there has been an un-predicted influx of young people with autism that were not budgeted for. He also states that there might be a need to tighten the eligibility for people who are deaf and blind. If we do not address these issues, according to Morton, the scheme will be unsustainable.

When the NDIS was rolled out in 2013 it was claimed that the scheme would be assisting 460 000 people with a disability by the time it is fully rolled out in 2019. I have always questioned these figures. I have always thought that the scheme under-predicted how many people with a disability would require assistance. Let us consider some statistics.

The Australian Network on Disability claims that 4 million people in Australia have a disability, that’s almost one in five. It further claims that 1 in 6 have a hearing loss. Australia’s population is 24 million, so that’s 4 million with some kind of hearing loss. Apparently there are also 357 ooo who are blind or have low vision. It is said that 10% of the population have a significant mental health condition. (240 000).

Then consider these figures from The House of No Steps –

  • Every week, 5 Australians sustain a spinal cord injury [2]
  • Every week 10 – 15 Australians sustain a severe brain injury [2]
  • Every 13 hrs, a child is born with cerebral palsy [2]
  • 1 in 1000 children born each year will have Down Syndrome [2]
  • Every 7 hrs, a child is diagnosed with an autism spectrum disorder [2]
  • Every 2 hrs, a child will be diagnosed with an intellectual disability

In 2012 the Australian Bureau of Statistics estimated that 115 400 Australians had Autism. Then we need to consider wheelchair users, neurological conditions, acquired brain injury and so on. It can be argued that the figure of 460 000 used by the government to justify the establishment of the NDIS and set budgets was nowhere near adequate.

I remember discussing this issue back in 2013 with a prominent Deaf advocate. We were discussing the fact that there were a few million Australian’s that had a hearing loss. My argument was that  many of these “few million” would require support. The advocate kind of poo pooed me aside. She believed that most of these would never need the NDIS. It was almost like it was only the people who had severe to profound hearing losses who would require support.

I felt then, as I do now, that her view was nonsense. Indeed it worries me when people stand in judgement of the impact of a disability. How do you measure the impact of deafness, or indeed any disability? Do we just come up with a broad assumption that it is only those with more severe hearing losses or disabilities that are impacted significantly?

Such an approach is fraught with danger. In years gone by I worked on a program for youth who had a hearing loss. I was always struck by the fact that it was often young kids with so called “lesser” hearing losses that had the most issues. There was an expectation of them that they could hear and cope, so therefore they were OK. But often they were not.

They would tell me how they struggled in noisy classrooms. They would tell me how their self-esteem was impacted because they struggled socially to communicate with their peers. They would tell me that teachers would often refuse to wear FM systems, because “they could hear just fine”. They would tell me how teachers would refuse to look at the class and talk to the board thus denying them the abiliy to lipread. They would tell me how they struggled in sporting clubs because they could not wear their hearing aids while playing and how this made it difficult to socialise. Often they would tell me they felt dumb because they were struggling at school from communication issues and were labelled lazy or inattentive.

What became clear to me was that the level of one’s hearing loss was not really a good measure of the impact of the hearing loss. I know of one person with a so called moderate loss who was a speech assessor. He has a degenerative hearing loss which at the time was bordering on the moderate range. His job was to listen to recordings of telemarketers and coach them to be able to convey their voice better. Of course it became increasingly difficult to do this as his hearing loss worsened.

He would speak of the difficulties he had socialising in restaurants and bars where his friends liked to frequent. He would tell of the difficulties communicating in noisy environments and how this had steadily led to him withdrawing and keeping his own company. This led to depression, loss of confidence and the need for intensive counselling.

It always concerns me when people like to judge the impact of one’s disability based on it’s severity. It does not follow that a person with a more profound hearing loss will require more support. It just means that they require a different type of support but that support is every bit as necessary. Then of course there are the additional costs. The hearing aids, the batteries, the audiology, the listening devices, the repairs and so on.  Often it is those with so called lesser hearing losses that have the need for the most up to date listening technology and it ain’t cheap.

If this support is not provided what happens to these people. Perhaps they become unemployed. They become socially isolated. They  may need counselling and medication if their depression becomes severe. In extreme cases suicide is not unknown. You cannot judge an impact of a disability solely on its severity. By investing properly in these people so that they get the right support it can be argued that he greater social cost can be avoided and this is both financial and moral.

It is for this reason it concerns me that Morton, in his article, is suggesting that some deaf and people with a vision loss will be deemed ineligible simply because there is a desire to reduce costs. When one starts to try and judge the impact of a disability based on some perceived level of severity we are on rocky ground. And this rings true whether it be autism, intellectual disability, mental health or physical disabilities.

That is the whole idea of the social model of disability on which the NDIS is based. It is supposed to look at impact and challenges to social and economic participation. This cannot be assessed on the severity of disability alone. To do so is to fall into the trap of the medical model of disability and to fall into this trap will kill the NDIS stone dead. Severity is a dirty word!

Hey Al !!!!

Australia’s Disability Commissioner, Alastair McEwin, is my friend. I am not one to name drop but I am just putting it out there.  In fact I met him as an 18 year old. Our first meeting ended with him being quite irate.  He claimed that I made him look silly, a fool was the word he used if I remember. Since then we have become good mates. I have shared meals with him, gone away on boy’s weekends with him and he was even the chauffeur at my wedding. Our favourite memory will always be the lamb chop dinner we had while he was house sitting his aunt’s home. He met Georgina and Diana that night and he is never likely to forget.

I am having dinner with Al tonight. It will be great to catch up. But I want to catch up with him as a mate. We both work in disability so the last thing we want to do is keep talking about it over dinner. So that I don’t bring up any shop talk I am going to talk shop now. I have a wish list for Al to consider. Listen up pal!

Al, you know that cinema access for the deaf in Australia is appalling don’t you?. You know there is not enough of it. You know that Captiview is, well, crap. You know that the Big 4 cinemas promised that something like 250 cinemas and any number of screens would be accessible for us deafies by 2014 and that we would have unparalleled access. You know that they agreed to do this in exchange for funding and that the guy that did your job before you played a big part in negotiating the deal. The blind were supposed to get audio description too. God knows what happened with that.

Well the technology is crap and often doesn’t work well. Hell, for some it’s even a health hazard. The access isn’t there, the Promised Land never arrived. The cinemas are in breach of their agreement, they have broken the law. The deaf are missing out on quality cinema. It is a human rights issue. Simple question – will the Australian Human Rights Commission (AHRC) hold the Big 4 cinemas to account?

Now Al the other thing is that disability and employment isn’t improving. In fact it’s got worse. People with a disability at ADE’s are still getting a pittance. Only 53% of people with a disability have employment. Often they are underemployed doing menial jobs on low wages. No wonder 45% of people with a disability live at or below the poverty line.

The Australian public service percentage of people with a disability employed by them over the last 30 years or so has dropped from over 6% to a point now where it’s just over 2%. Governments that should be leading the way are not. For the deaf the paltry $6 000 a year interpreting funding for employment is a barrier for anyone that wants to progress as a deaf professional. Hell, unless a deaf person is working for a large organisation that can afford to pay over $20 000 a year in Auslan interpreting or captioning the chances of employment are almost zero.

The guy that did your job before you was big on this. He wanted quotas. He wanted action. He even took on Myer. I reckon that he was so outspoken is part of the reason he why lost his job. BUT, the point is that the employment situation for people with a disability sucks! What is the AHRC going to do about it? Surely 45% of people with a disability living in poverty is scandal enough to get something happening – a Royal Commission perhaps! No, wait, that’s only for something like Pink Batts isn’t it?? – My bad!

And then there is the NDIS. I know you are big on the NDIS. I think it’s one of your five priorities. As you know I work within the NDIS framework and can tell you when it is working well its fabulous. But you see just providing funding to people with a disability is not enough. We need investment in the community.

Last year I attended a Mark Bagshaw talk. He told a story about how he catches trains to the Blue Mountains for a day out with his wife. You know he can only fit in specific parts of the train because his wheelchair is too big. He can’t get into the regular carriages. Instead he has to go into a particular part of a carriage. This particular part has no air-conditioning. In the summer if he is on the train he sweats like a pig. If its winter he freezes.  It is 2017, this is just not right.

And you know as the NDIS rolls out more and more people with a disability are going to get out there in the community. They are going to be more visible. They will have the supports and the means to get out. But trains are still largely inaccessible. Tram stops and bus stops are inaccessible. In Melbourne we have the bizarre situation where you have an accessible tram stop that is serviced by trams with – wait for it – steps!

Buildings are still inaccessible. There are not enough accessible taxis. NDIS participants have money for transport but can’t find any transport that is accessible. It’s crazy. We are giving all these people with a disability money to get out there in the community so that they can be active members and contribute economically but we are not investing in any new infrastructure so that our community is fully accessible.

I mean there are people with a disability who have severe physical disabilities who go out in the community and do not even have toilet facilities. Even when they have accessible toilets they have to get changed on the floor with their head wedged near a toilet bowl. Yet Changing Places toilets offer a solution but the roll out of these facilities is painfully slow.

I will say it again – What’s the use of a program to enhance community participation when that community still is largely inaccessible? I mean only two people in a wheelchair can fly on any one flight at a time. How humiliating is that? If these things are not a human rights issues, I don’t know what is! So AL, what are the AHRC gonna do about this?

But seriously, how many people with a disability have to get abused before there is a Royal Commission? You would have seen and been appalled by the 4 Corners report into the abuse of people with a disability. It’s not new this abuse. Many organisations have been exposed. Its been talked about for years. I cannot fathom how abusers of people with a disability can get off simply because prosecutors decree that people with a disability make unreliable witnesses in court.

What really galls me is that known abusers actually are still working in the system. How can this be? I cannot fathom the cover ups. I cannot Fathom how people can put reputations and dollars before abuse of people with a disability. But it is happening. It is horrific.

Your boss, Gillian Trigg’s, was brilliant with children in detention. She went out on a limb for them. She copped scandalous abuse from your political master. (I  cant even say his name without feeling sick) Pink Batts warranted a Royal Commission. Abuse of kids by the Catholic Church warranted a Royal Commission. I’m not saying none of these commissions were warranted but why isn’t something similar being mooted for people with a disability who are systematic victims of abuse in Government funded facilities? But the Government’s response to a call for a Royal Commission into this abuse has been a flat NO!

Will the AHRC take up the cause. As I said, if Ms Triggs can fight so hard for the children in detention, surely this warrants a similar response for abused people with a disability within these facilities. It should and it must!

And then of course, Al, there is the dreadful Disability Discrimination Act (DDA). A law that relies on complaints, good will and a prayer that offenders will come on board. It was never going to work. Especially when the only real way to get change is usually to go to court and at great expense. Given that 45% of people with a disability are in poverty how many can afford that???

The DDA was wonderful in its day but the day has long passed. History tells us that most big organisations and offenders piss on the DDA. They piss on it because it is pathetically weak. The AHRC needs to acknowledge this and campaign to give the law some teeth. Big fines and even gaol time for big and repeat offenders are the only way to go. And please get rid of that stupid exemption thing, particularly for big and wealthy corporations. A multi-billion dollar oragnisation should never be given exemption to discriminate EVER. If you want to see what a strong legislation and jurisdiction can achieve just look at the type of access that Netflix has been ordered to and does provide. Change is long overdue!

So Al, that is off my chest. There is clearly much to be done. I’ve known you for a very long time and I know that you are up to the challenge. If you need a right-hand person who is also up to the challenge just give me a call – Advocacy is my thing! In the mean time I promise not to say a word tonight, see you at dinner. Oh! By the way, the houseboat thing, remind me tonight!

Disability Humour – Yea or Nae?

itThere are certain subjects that people think are taboo. This  can be race, gender, death, disability and host of other things. Yet comedy has touched on these subjects and worse for many years. Particularly today where comics seem to have lost the art of innuendo and choose to get their laughs through shock value.

Let’s face it, most of us have all laughed at blonde jokes. Most of us have laughed at racist jokes too . Did you hear the one about the English man, Scotsman and Irishman … The Irishman will always be the fall guy. Then of course it’s usually the Irishman’s lack of intellect that we laugh at which leads to us making fun of intellectual disabilities … Yet we laugh regardless.

But one persons funny is another persons offensive.  For example the man with no arms and no legs who went swimming, his name is Bob. Here we are clearly making fun of amputees but we are also using a pun in the play on the word and name bob. The pun is funny but should the circumstances of a person with a disability be used to get a laugh? Some would say no, some will say yes and others would say it depends on the intent. Nevertheless, humour that involves disability is nearly always contentious. (This is true of nearly any humour that is targeted at disadvantaged groups including gender based humour.)

Personally I think there is a place for disability humour. I mean people tease me about being deaf all the time. I love it. I see it as a measure of their acceptance. I love it that they feel comfortable enough to laugh when I mispronounce words. I love it when they fall about hilariously when I don’t hear alarms and just go on my merry way. I just see it as part of the human experience. Just as long as we are all laughing together I see no harm. But I accept that other people with a disability may not share my view and this is often based on their past experience of their disability. This is particularly so where they have been bullied and victimised.

For me it is the struggles that non-disabled people have in their interactions with people with a disability that are most amusing. Whether it’s colleagues calling me on the voice phone to apologise for forgetting to book an interpreter (duh). Sometimes their efforts to communicate with me are hilarious. One colleague used a gesture to try and signify GROUP but inadvertently and unknowingly used the sign for vagina. I told her not to use that sign. She asked, “why not?” And then it hit her, “ Oh my god I have been signing vagina havn’t I?” We laughed until we had tears in our eyes and it took quite some time to compose ourselves. Quite embarrassing when you are in the middle of a meeting. These interactions between disabled and non disabled can be hilarious.

I am a great fan of the comedy show The IT Crowd. There is one particular episode that had me in stitches. In this episode one of the characters, Roy, is in a pub for a work outing. Roy goes to the toilet. He is busting but all of the cubicles are taken. His desperation leads him to use the accessible toilet.

He finishes his business and goes to flush the toilet but accidentally pulls the duress alarm. Staff at the pub run to his aid and break down the door. He throws himself to the floor  and pretends to be disabled. They find him curled up on the floor. Whereupon he claims that someone has stolen his wheelchair. You can watch the skit below, unfortunately I could not find a captioned version.

I found the skit absolutely hilarious because it highlights the absurd ways that non-disabled people behave when confronted with disability. It is a great examination of attitudes and also highlights why people who are not disabled should not use accessible toilets. You can bet that the accessible toilet that Roy was using is the only toilet available for people with a disability. It is disability humour at its best because it is funny and it creates great awareness. (Plus you can bet that thousands of watchers of the show were laughing at their own embarrassment at having sneakily used an accessible toilet because all the other toilets were being used.)

But too often disability humour is just offensive and cruel. In 2012 Joe Hildebrand, a journalist, tried using disability humour to explain his experience of customer service at Sydney Airport. Hildebrand Tweeted, “.. I just want to say that I think it is great that the Sydney Airport is providing so many jobs for the mentally handicapped.” For his trouble he copped a spray from the late and great Stella Young at the now defunct Ramp Up

Said Stella, “Hildebrand’s tweet is offensive because it uses disability as a shortcut to mean “crap”. And in doing so, he reveals a subtle and no doubt unconscious contempt for disabled people that is still rife in our culture….” And there lies the crux of the matter. When people start to use disability to signify lesser, inferior, worse and incompetence it is not funny. It’s offensive and unacceptable.

I am often guilty of poor use of language which disparages people with an intellectual disability. Recently I called Donald Trump, mentally deranged. This did nothing except stigmatise people with an intellectual disability and people who experience mental illness. All too often I use the words stupid, idiot and even moron. This is offensive to all people with an intellectual disability. Indeed, many would have been the brunt of bullying at school where they were remorselessly called all of these terms.

Ronald J Berger in his article, WHAT’S SO FUNNY ABOUT DISABILITY,  makes a great distinction between what is disability humour and what is not. He uses the terms “disabling humour” and “disability humour”.  The former refers to humour that belittles and denigrates disability. This is where people are laughing at people with a disability and using them as objects of fun. Disability humour, however, explores the experience of disability and its interactions with the world. This humour enlightens and allows people, disabled and non disabled, to better understand disability as it relates to life. As Berger points out, both disabled and non disabled are laughing together.

I am sure many disabled people, like me, do not want people to take them seriously all the time. I am sure they, like me, know that disability can be ironic and the experience of disability can be very funny. It is not all tragedy and heartache. The trick is to laugh with us and not at us so don’t be frightened to use disability humour. Rule of thumb, if your not sure or if what you are about to say is making you uncomfortable, don’t say it. It’s probably offensive.

On that note, I’ll leave you with a great example of Disability Humour …

Funny things happen to me in my wheelchair. Being a quadriplegic I have no use or sensation in my hands. I slip a kind of large insulated cup onto my wrist to lift a can or small bottle of drink to my mouth. I call it my cooler. I was sitting outside of the Treasury Casino one night when a lovely woman came by and dropped a few coins into my cooler! OMG, wheelchair pity, she thought I was some kind of handicap street beggar. (Taken from the Mad Spaz club)

A Slip of the Tongue

simProfessor Alan Mackay-Sim is the Australian of the year for 2017. Mr Mackay-Sim is a distinguished scientist. He is a trail-blazer in stem cell therapy research. Mr Mackay-Sim’s work has far reaching consequences. It impacts on the treatment of people with cancer, spinal injuries and even conditions of the brain such as Parkinson’s and schizophrenia. Make no mistake, Mackay-Sim is a brilliant man and his work will impact positively on the well-being of many people in the years ahead.

Imagine using stem cells to be rid of the debilitating tremors of Parkinsons. Imagine having a severe spinal injury and being fixed so that you can do all the things that you once used to do. Maybe not all of them but at least be independent and mobile. Imagine the deaf having their nerve cells restored so that they can hear again. Perhaps livers and hearts can be repaired rather than having to rely on transplants and years of drugs to prevent rejection of the new organ. It is no small thing that Mr Mackay-Sim has done.

In his acceptance speech for Australian of the Year he excitedly proclaimed;

“We must, as Australians, prioritise our spending so that we can afford not only to look after the disabled and the diseased in our community, but to look at future radical treatments that will reduce future health costs,”

He further went on to say;

“More than 10,000 people in Australia have a spinal injury and we add to that tally by a person every day and the cost to Australia is about $2 billion annually.”

And with that he upset many in the disability community.

For a while I stopped writing. I needed to think over the message I wanted to convey. In years gone by I would have had the tendency to get stuck into Mr  Mackay-Sim for the gross disrespect that he had just shown to people with a disability. But I decided to enact the 24 hour rule and think it through. (Such is the wisdom that comes with the mellowing of age.)

At home that evening I sat down to continue my binge watching of HOUSE on Netflix. For those that don’t know, HOUSE is the medi-drama/comedy that stars the very talented Hugh Laurie. HOUSE is a brilliant diagnostician doctor. He can diagnose anything eventually. He is also a seemingly dry and emotionless man. (But we all know it is really just a façade and he is kind, gentle and caring soul.) With a stare into the distance and twitch of the nostrils we know he has got it. Like Holmes said do Watson, it was seemingly elementary.

In this particular episode HOUSE is treating a woman that was previously blind. She had a cornea implant and after years of not being able to see she suddenly could see. But she was not happy. What she saw was ugly. It made no sense to her. It did not make her happy. It engulfed her with sadness and horror. Said HOUSE, “Even seeing cannot change your misery”

And the disability activist in me loved HOUSE. I loved him because he was suggesting that the world of abelism is not what we all think it is. I loved him because he was telling the world that there is more to life than just what able bodied people think is utopia, There is a blind life, a deaf life and a disabled life that is no different to any life. Its all about values and experience. There is no one way to happiness. This I believe.

And then he spoiled it. He chopped off her skull. He did this and that with her brain. He covered her eyes in bandages. After mutilating this woman in this way he stood before her hospital bed. “HOUSE”, she said, “I can smell you.” Yes, this previously blind woman had not lost any of her blind talents. “Back to blindness, back to ordinariness.”  Said HOUSE, ” … I will take the bandages of your eyes and what you will see will be far better than what you ever saw before.” (The dialogue is my paraphrasing of what was said, it is not the actual dialogue)

You see there had been some kind of brain injury. This brain injury had impaired the woman’s ability to perceive images as “normal” people do. The miracle of brain surgery would restore her sight as it should be. And so HOUSE removed the bandages. The woman looked around and at the face of HOUSE. “How do I look?”  asked HOUSE?  And the woman smiled. The illusion of the perfect world of blindness was shattered. Seeing was everything.

BUT WAIT!!! Just in my last Rebuttal I professed to being scared witless at the thought of loosing my sight. As a deaf person I need and want my sight. All I had was cataracts and I was literally a nervous wreck. Seeing to me is everything. It lets me continue to do all the things that I love. What am I? The worlds biggest hypocrite? Given the choice I would never, ever want to be blind.

But that is because I have learnt sight. In fact if you are born blind and suddenly find yourself seeing you apparently have to learn sight.  There was some very interesting research done about people who are given sight after being blind since birth. It is apparent that the restoration of sight is no fairy tale. “… first moments for the newly sighted are blurry, incoherent, and saturated by brightness—like walking into daylight with dilated pupils—and swirls of colors that do not make sense as shapes or faces or any kind of object. The moments immediately following bandage removal are not quite as ‘magical’ as Hollywood movies would have us believe,” Apparently nothing the newly sighted person sees makes any sense because sight is not innate and must be learned. There are even documented cases where sight has been given to a born blind person and it has been so traumatic that they wished that they were blind again.  Read full article here.

While I do not want to be blind that does not mean that the life of a  line person is crap. There are clearly many happy blind people who are very satisfied with their lives. This goes for deaf, wheelchair users and other people with a disability. What Mackay-Sim has done, probably unwittingly, has devalued the life of people with a disability. He has assumed that being able bodied is the thing to be and with his statement he has labeled every single person with a disability as lesser, and worse, a burden to society. This is sad because with a slip of the tongue he has undermined all of the great work he has done, at least in the eyes of many people with a disability.

That said disability is not always a great thing. It can be painful, stressful and sheer hard work. There is no doubt that many people with a disability, given a choice, would jump at the choice of having their condition eliminated so they can be free of pain and fully independent. All well and good but this does not justify labelling people with a disability as lesser and a burden and Mr Mackay-Sim needs to be mindful of that. For the record, people with a disability are a thriving economy providing employment for thousands of people around the world estimated to be in the trillions of dollars. Be it care, technology, professionals or equipment there are many people that owe their livelihoods to people with a disability. Mackay-Sim being one of them.

 

An Eye Opener

stellaI am and remain a fan of the late and great Stella Young. I loved her views on inspiration porn. I loved her caustic wit as she spoke about people who would pat her on the head and others that would praise her for simply getting on a tram. For those that do not know, Stella was a short statured person and a wheelchair user. She had no time for people and a society that were obsessed with pitying people with a disability nor seeing them as objects to inspire. Her attitude is best summed by this quote,

“I dance as a political statement, because disabled bodies are inherently political, but I mostly dance for all the same reasons anyone else does: because it heals my spirit and fills me with joy.”

And that’s why we loved her so. She made us all human where others refused to see it

People with a disability and their associates mostly want disability to be seen positively. They want people to recognise the contribution that people with a disability provide to the greater community. They want people to recognise talents, personalities and a general human existence. That’s all people with a disability ask along with having the means to be active members of society. Unfortunately society does not always let this happen. Curing, fixing and pitying are usually the primary themes that come up when most people discuss disability.

However, disability is not always a great thing. Firstly because our society won’t let it. Secondly because disability can actually be painful and stressful. And thirdly disability can impact on a person at any time in their life. That timing of disability can be crucial. To suddenly have to adapt to losing function in ones body can be traumatic. Even people with a disability know this. Those with degenerative disabilities will tell you how frustrated that they become as their body steadily fails them. Sure, it is often society that compounds this but lets not kid ourselves, having a disability can be scary and a complete pain in the arse.

Of late this has hit me hard. I apologise in advance to all my deafblind friends because quite frankly what I am about to write is going too make me seem like a blubbering sook. True, I am, but I have no shame in owning up.

It started just over a year ago. I was playing in a tennis grand final. My middle son was playing doubles with me. In an attempt to save a winner he smashed the ball directly into my left eye from point blank range. For a few days I had blurred vision in my left eye but it seemed to clear. I recall, at that time, being absolutely petrified. Being Deaf my eyes are my ears. Being active my eyes are important too. Too play tennis, see movies, play golf, communicate .. they are my everything. So to lose my sight would, putting it mildly, turn my life upside down.

Over time my eye healed but about 8 or so months later I noticed my sight was getting worse. I thought I just needed new glasses and needed to see the optometrist. Of course being a male, and very busy, I put this off. I noticed over time I was struggling to see at night. I couldn’t play tennis under floodlights. It hit me one day, about 4 months ago, when I went to play golf. I had no depth perception and actually had to shut one eye to see the ball. I covered my good eye and realised that my other eye was actually so bad that it was actually legally blind. I almost shat myself.

I knew something was very wrong and needed to see a doctor. Of course I was scared and I put this off time and time again. Perhaps I was going blind. This scared me to high heaven. Knowing it and confirming it are two different things. So I did what a lot of males do. I took trip up a river in Egypt to denial. (De Nile)

Eventually I bit the bullet and went to the doctor. The doctor referred me for tests and to cut a long story short, the tests showed I had cataracts in both eyes. Thankfully this can be corrected with surgery. It is possible the whack from the tennis ball contributed, no one knows. The left is worse, in fact legally blind. Over time the right eye will progress to the same state. It’s not understating things to say that this scared me more than anything in my whole life.

In moments alone I would break into cold sweats and panic. At work I was struggling to see the computer when I was tired. When you are communicating and doing everything through one eye, and one that is not fully functioning at that, its tiring. When I get home I just collapse into bed.

To be frank, I was and am a wreck. I do not want to go blind. I don’t care about all those people that say to be positive about disability, going blind would be the worst thing that can happen to me. Being deaf is one thing, I’ve had forty two years too adapt to that. To suddenly be deaf and blind, well, no thank you. All the things I value would be gone. Sure I could adapt over time, but I don’t want to lose all those things that I value. I realise that these things, the sport, the movies, communicating, lipreading, signing, facial cues etc are the core to my being. I didn’t want to lose them.

I have been lucky because I do not have private health. I pleaded with the doctor to escalate my surgery. I argued that my eyes were my work, my communication and my access to the world. I argued that if my right eye, that also has cataracts, worsens quickly (and it is) I won’t be able to work or communicate. The doctor wasn’t particularly empathetic but the surgical nurses were. I called them and explained my situation, they got me into surgery within a week.

The surgery is next week. I am relieved. But most of all this experience has changed me. I realise even more now that the impact of disability is different depending on when the disability occurs. You cannot just say to someone that all will be ok and that people with a disability are living great lives and that they can too. It is not that easy. That period of adjustment and the loss of capacity to do so many things that you value is no small thing. It is huge and it is scary.

But still I love Stella and still I see disability as a positive thing. Still I think disability makes the world a better place for the diversity of experience that it brings. BUT  make no mistake, being deaf is enough for me. The things that I like to do I want to keep doing for as long as possible. To not be able to do these things would have a really negative impact on my life. It is an impact that I have no wish to experience any time soon.

If that makes me weak and a sook, then so be it. I wish I was made of sterner stuff but I aint!