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!

The World of the Deaf Professional

smashI work in an office where targets are the number one game. We have to achieve these targets or there is hell to pay. As a deaf professional they cut me no slack. Not only am I a manager but I have a caseload which is about 60% of the people that I supervise. So on top of my management duties and supervising staff I have to churn out the outcomes as well. It is a high pressure environment where you either work hard or get out. There is no respite.

I console myself by telling myself that the job that I do and the hard yards that I put in benefits thousands of people with a disability. Of late I have reflected a lot on just how different it is to be a deaf professional. The deaf professional has to be supremely organised. They have to be innovative. They have to be patient. They often must make sense of their environment with less than 100% information. The deaf professional is constantly playing catch up. Always filling in the missing gaps. It is not an easy gig

My workmates have to meet hundreds of people a month. In a short time they have met and satisfied the needs of nearly 1500 people with a disability. Turn-over in dollars to support these people is in the many millions of dollars. We change lives. We don’t satisfy everyone but we satisfy a damn lot of people.

My work mates can simply get on the phone. Book appointments and meet clients. Come back, make a few phone calls and finalise support. The whole process can take a few days. It seems pretty straight forward but let’s look at what it entails for a deaf professional

Each day we have to check our inbox. In that inbox will be our allocation of clients. These clients have to be contacted. Work flow comes in spurts. Any given week we can find an extra 10, maybe 15 clients that we need to support. Hearing workers simply call and make times to meet. Not I.

Firstly I need to call these clients through the National Relay Service.(NRS) The NRS is a brilliant service but it is painful and slow. When you call it takes a couple of minutes to connect. You log in to the website, you enter your phone number, you enter the captcha code (that often takes two or three efforts before it is accepted). You are then welcomed to the relay service. You are told to standby until a relay officer is available. This takes time. The number is dialled and the client answers. There is a long silence as the relay officer explains the service. Just to connect might take five minutes.  When this happens for every client and in a time hungry environment, it is valuable time wasted.

But it doesn’t stop there. Sometimes the client hangs up thinking you are a telemarketer. Sometimes they just struggle with the system. Sometimes they are from CALD backgrounds and the relay officer struggles to understand them. It’s slow, cumbersome and frustrating. But it is all we have and I am thankful for that.

As you can imagine, making time to see the clients takes up a lot of time. No matter, appointments are made and we are on our way. But it doesn’t stop there. You see the Deaf professional has to be supremely organised. They need to book appointments far enough ahead to ensure that they can get interpreters and / or captioning for their meetings.

This is done online. Each online booking takes about five minutes. Then there is the wait to see if captioning or interpreting is available. Sometimes it isn’t and meetings have to be rescheduled necessitating another adventure with the relay service. The smart deaf professional endeavours to get clients mobile numbers to text them. Or they email and communicate that way rather than the NRS. Sometimes our clients are illiterate or have print media disabilities. It is not always straight forward.

Then of course you actually have to meet clients. At the moment my big thing is to use live remote captioning (LRC) through my mobile phone. I do this because it is less intrusive. If I use an interpreter this is another person in the room. This can make it uncomfortable for the client, especially when they are divulging extremely personal information. So to avoid this I use LRC, it is much more discrete.

But even this takes organising. I usually meet clients in their homes. About five minutes away from my destination I login to the captioning on my iPhone. I speak to the captioner. “Hi Lee. I am five minutes away from the participants home, participants name is John.” Lee will thank me for the information and begin programming names in so that I know who will be talking. I am always checking the phone to make sure the power is enough to get through the meetings.

As I park the car I let Lee know that I am walking to the participants house. I knock on the door. The participant answers. I then have to explain how the system works. Sometimes the data connection isn’t great and the captioner can’t hear well. I then have to ask if I can borrow the participants internet so that I can get a better reception. Sometimes they do not have internet so I have to make do. I am lucky that the captioners are brilliant.

As brilliant as they are there is still missing information. Again I have to fill the gaps. It’s vital that I miss nothing. We are dealing with people’s lives here. A mistake can be crucial. Sometimes I must email and clarify. Sometimes I have to use the dreaded relay service again. Sometimes I have to ring organisations for more information, again through the relay service. These are things that a hearing professional just cannot comprehend. The time that this adds to the process is enormous.

It takes time. It takes organisation and very different skillset, let alone mindset. That is just the participants. Then you have the day to day operations. The people that come in the front door. The staff that need support. The impromptu meetings where captioning nor interpreting cannot be arranged. It’s not for nothing that the Deaf professional is often completely smashed when they get home.

But I wouldn’t change it for the world. Because my job matters. It makes a difference to peoples lives and that is my reward. I am lucky. I am lucky because I have such a rewarding job. I am lucky because I have such a supportive employer. I am lucky that I have team mates willing to adjust and support. Mostly I am lucky to have clients who are willing to meet me half way. This is despite the many challenges they themselves often face.

So hats off to all those deaf professionals out there. Congratulations to all those deaf professionals who are making waves and creating opportunities. It is simply because they are doing this that opportunities are being created for others to follow in their footsteps.

Merry Xmas everyone – keep up the good fight.

Postscript: As an aside I would like to add that captioning and interpreting are equally as effective. It is all down to choice and what works for the individual. I use both … interpreting is provided by the ever brilliant Auslan Services who have no peer in terms of supporting deaf professionals. Captioning by the equally brilliant Bradley Reporting.