I think at 53 I am becoming more cynical and more insular. You know for  45 of the 53 years I have been deaf. You put up with a lot of shit when you are deaf. Not just deaf but if you have a disability of any type. People are either over the top in trying to meet your needs or they just exclude you all together.

Yes, I have had religious people come up and bless me when they have seen me signing with friends. I’ve had literally hundreds of people come up to me and sign Hi! This is either with an exaggerated wave or they finger spell it. The worst is the American alphabet H and I. With a broad grin people come up and do that awful wrist flick with a H and an I.

Is it entirely wrong for me to want to punch them in the face when they do this to me? OK, it’s a little bit wrong but believe me it’s very irritating. I swear it’s part of the reason a night or even week at home with Netflix is so much better than this kind of human interaction.

If you think that I sound old and bitter you are probably right. But you know there is a campaign that is aimed at making people with a disability feel more included called Just Say Hi! There are heaps of videos just like the one below. For a laugh turn on the automated captions, it’s the only access deaf people have to this video. How do you make deaf people feel included?  Just make videos like this with no or second rate access!

 

“Instead it came across as go seek them out and say HI!  No one does that in real life. EVER!

 

Many people with a disability hate this campaign because they think it is really patronising and it is.  Because, you know, we just walk up to complete strangers and say Hi every day. I want to make more Muslim friends so I go out and find Muslim people and say Hi! I don’t know many Aboriginal people either so I am gonna go to Redfern and mingle and say Hi to every Aboriginal person I see. It is completely normal isn’t it? No it isn’t. It is daft and patronising.

That is not to say you ignore people with a disability. It is to say you just talk to them when you meet them in life. Perhaps at a party. Perhaps at work. Perhaps in a bar because they are with your group of friends. You say Hi when you have common interests and you have a genuine interest in people.

I am sure this is what the designers of this campaign had in mind. They were trying to say treat people with a disability like any other. Instead it came across as  go seek them out and say HI! No one does that in real life. EVER!

But why were people with a disability so upset about this campaign? I’ll tell you why.

It’s because it gives non- disabled people a license to use people with a disability as a tool to make themselves FEEL GOOD. John with CP over there .. HIIIIIIIII! I’ve done my good deed for today.

Stella Young hated these kind of campaigns. She despaired getting on a train or going into a bar because some well meaning person would come over and say something like -“Hi, it’s great to see you out and about.” Inevitably someone will come over and think they are being kind by taking an interest in you. “What happened to you?” they enquire.

Sadly this is often what well meaning campaigns like JUST SAY HI do. They just give people a license to satisfy their curiosity and do their good deed for the day.

 

“It is a truism that it is nearly always up to the person with a disability to lead the way.

 

Inclusion is never easy. It is a truism that it is nearly always up to the person with a disability to lead the way. They have to explain their needs and make endless requests for the environment to be adapted. This is because the needs of people with a disability are rarely considered in the design of things.

In my current job I spent some time teaching and informing my workmates as to what needed to happen for me to be included. I was very strong in letting them know that when they are chatting I often miss out on what is going on. Often what they are talking about is relevant to work and I need to know.

To their credit they’re terrific and when they’re chatting on the floor they will, often without me asking, just let me know what they are talking about. Even if they’re talking about what they did on the weekend. They do it naturally and easily and it makes me feel very included.

And that is the key – Do it naturally and easily. It cannot be false and it cannot be forced. It especially cannot be orchestrated by well meaning campaigns like JUST SAY HI!

I dare say if the designers of such campaigns took the time to ask us people with a disability what we thought before diving headlong into such campaigns they could have saved themselves a lot of pain and bother. Mostly they could have saved US, the people with a disability, the pain and bother.

Nevertheless, the struggles of non-disabled people to make us disabled’s feel included can be the stuff of much hilarity. Watch the video below and if you want to have an awareness campaign that works – Follow the format! Enjoy.

I’m a cheater. I have cheated lots of times. Probably more times than Steve Smith and David Warner combined. I played Cricket for the Deaf cricket team many times.  It was kind of crazy because when we played umpires were players from our own team. So when I batted the umpires, more often than not, were other deaf cricket players. So hearing bowler steams in and bowls me a rank long hop which I try to pull over mid on. There is the faintest of snicks that goes through to the keeper.

The hearing opposition go up as one, “HOOOOOWWWWWZAAAAATTTTTTT”. Of course the deaf umpire cannot hear the snick so asks me if I hit it. Hell, I’ve yet to score and I am not going anywhere. I shake my head in denial. “Not Out.” says deaf umpire. Meanwhile hearing opposition have gone hysterical and are calling me every name under the sun. Do I care? Nope, I just wanna bat some more. Is it bad? Of course it is but in the scheme of things I am hardly a mass murderer am I?

So the Australian Cricket team cheated. They tried to rough up the ball a bit so that their bowlers could make the ball do reverse swing. I wont bore the reader with a scientific explanation of reverse swing suffice to say it makes the ball go in the opposite direction as to what it should.  You know roughing up the ball probably only gives the bowler as very small advantage. It’s  no biggie really. But the problem is they tried to do it on the world stage with television cameras everywhere. They got caught, OOPS.

A bit naughty really but they are not the first nor will they be the last. A fine and a slap on the wrist was probably all that was needed. But OH NO! Australia and the world went mad. Every newspaper, every comment on Facebook and every news item on television leads with it.

” He is livid because Peter Dutton, that leg of mutton, has had the gall to let white South African’s come to Australia on protection Visa’s

SACK THE LOT OF EM people cry. The Prime Minister even has something to say about it. James Sutherland, CEO of Cricket Australia, emails every registered cricketer and fan in Australia to apologise. The captain is stood down, fined and suspended. The Vice Captain is stood down and the nation is in shame. OH MY GOODNESS it’s the world’s end!

Meanwhile David Marr is on Insiders, the ABC’s Sunday morning political review of the week. He is livid because Peter Dutton, that leg of mutton, has had the gall to let white South African’s come to Australia on protection Visa’s.  Apparently white South African farmers are being killed and this warrants protection. In Marr’s view this is racist because Black, Islamic or Syrian refugees are being denied entry to Australia and sent to Manus Island even though their need is just as great. Marr believes that white people are being given favouritism. But let’s forget that because the Australian Cricket team cheated and are a national disgrace.

“Surely this warrants a higher level of outrage than cheating cricketers. SURELY!!!

Apparently, according to Marr, there are literally tens and thousands of people in other countries in similar danger as the white South African farmers. These other people have a greater need but their requests for help are being ignored. Marr is angry because children are still on Manus Island who have self harmed and are being denied entry to the Australian mainland. Why don’t these important, tragic and compelling humanitarian circumstances raise the anger of Australian people in the same way as cricketers cheating? Why doesn’t a clearly racist immigration minister who addresses his critics by announcing that the said critics, “…are dead to me…”, raise the same level of response? Surely this warrants a higher level of outrage than cheating cricketers. SURELY!!!

In this sports obsessed country of ours a little bit of yellow tape down your pants is more important than refugees dying. Sticky in my Dicky reads the headlines and meanwhile George Pell is in court on child sexual abuse allegations. Sack the captain they say but ignore Michaelia Cash threatening to spread salacious gossip about innocent women who happen to work for Bill Shorten. I don’t see the country screaming for her head when they should.

Meanwhile people with a disability can’t get work and 45% are living in poverty but a cheating cricket team warrants more attention.  All over Australia people with a disability are being abused and even killed. In some cases the courts seem to endorse it calling it compassionate killing. Where is the nations outrage about all of this!

No question that the Australian cricket team did a bad thing. But in the scheme of things it’s just a game and really not that important. How is it that a bit of yellow tape and a roughed up ball can cause more outrage than real human suffering? I don’t understand it.

This is surely the nations shame!

We do not have a money problem in America. We have a values and priorities problem.

Marian Wright Edelman

(Please watch the video before reading the article. Otherwise it will make no sense.)

I hope you enjoyed the video. Of course racism is nothing to be laughed at but this video is very good. It pokes fun at white people who sometimes exhibit unconscious bias. You know, those people that claim they are not racist but actually are. Usually they start a sentence with – “I am not racist but ….”

But this article is not about racist it is about ableist. I’m going to use this video to highlight the many experiences of ableism that I have experienced in my life. I am sure many of my disabled and Deaf colleagues will relate. And to all those non-disabled people out there who accept me and are inspired by me because of what I have achieved despite…. This is for you!

“You see I was special. I was Lil’ Deaf Gary”

“We love white people at SBS and we deeply respect their vibrant culture and way of life. HELLO ELLEN …” – It was this line that made me realise that their are many similarities between racism and ableism. Who amongst us in the disability community has not heard of the Down Syndrome community being tagged as happy and joyful. “Down syndrome people are so lovely , they are always happy …” Or those hearing people who wish they were Deaf because Deaf culture is so enchanting. But mostly for me it was the bloke patronisingly getting down to Ellen’s level, almost as if he were superior, to say hello loudly and slowly. This really hit me!

Not to long ago I worked at the Yarra Ranges Council. We worked in these partitioned offices. These offices were divided by false walls and at eye level there were small glass panes. Every morning my boss, Rachel was her name, would come in and peer at me through this pane. With eyes wide and an enormous grin she would wave crazily at me. “MORNING GARY .. ” she would say in what I fancied was a high pitched mocking tone. Being Deaf I would not know.

Not to anyone else, just to me. You see I was special. I was Lil’ Deaf Gary. She meant well, I know. She was trying to make me feel included. But every morning I dreaded the moment that she would come in and unconsciously patronise me. It was a strangely stressful routine that irritated me no end. I felt guilty for wanting to punch her in the face. In hindsight this desire was entirely warranted. She looked not unlike the woman in the picture below, honest.

“I firmly believe that white people continue to make a fascinating and meaningful contribution to society …..”  – Breathe deeply  my Disabled and Deaf colleagues. We have all heard this. Non-disabled people spouting nonsense about how people with a disability should be allowed to be a valued part of our community. It is almost like these non-disabled people give us permission to do so.

It’s not seen as something that should be standard. It is seen as something that is rare and wonderful. When we disabled people are actually out their achieving something it’s because these non-disabled people have made it possible. Not because we disabled people have worked our butts off to get our qualifications. Not because we have overcome any number of prejudiced attitudes. Not because we have found a way around any number of barriers that society has placed in our way. It is because non-disabled people think we should be able to. And permission granted they ride off into the sunset with a warm glow because they, of course, made it all possible. Harsh? Perhaps, but that is the reality.

” … And he is just like anyone else.” – Oh yes Deafie plays cricket just like everyone else even though he can’t hear his team mates. Oh yes, Bobby the autistic is just like all of us. He loves and eats and goes to the toilet. Oh and they have sex too . They are gay, god forbid, but there are gay disabled’s too. Stella Young used to tell the story of people patting her on the head and proclaiming that it was wonderful that she was out and about. No doubt it was a shock that she could do this,  just like them. I had girlfriend once who took me to a dinner party and started telling people all the things I could do and liked to do, just like everyone else. The relationship did not last long.“

My favourite was the cabinet maker that loved employing deaf people because they couldn’t hear what people were talking about and were not distracted.”

“Some of our best employers are white …. “  – Now … This one really grates. I have worked in and around the employment sector for nearly 30 years. This is how the disability sector markets people with a disability. You see people with a disability are spectacular workers. Their disability does not stop them. They love coming to work. They are rarely sick. They are punctual. My favourite was the cabinet maker that loved employing deaf people because they couldn’t hear what people were talking about and were not distracted. This made them more productive. And people with a disability are good for team morale, they inspire everybody.

I have spent a lifetime telling the sector to stop marketing disability in this way. I say often that you must focus on the skills that the people with a disability bring. You must focus on the fact that they are good at what they do. That they are value for money. You invest in the person because they are worth it and will bring a return for your investment.

Disability comes into it a bit. After all you have to modify things sometimes. Sometimes you need some assistance from the government to meet the cost of modifications. This is all part of the marketing. Please don’t start marketing with, “… if you employ a disabled person you will get x amount of dollars in wages subsidy.” Focus on the value and the skills. Despite my best efforts, nothing much has changed.

There you have it. The video at the start of this article was a spoof on racism. It reverses things and highlights the attitudes and behaviours that white people often are guilty of.

People are often unconsciously racist.  If you pick them up on this they will become incredibly offended. This is also the case with ableism. We people with a disability or who are Deaf face it everyday. We grin and bear it most of the time. But make no mistake, even though it can sometimes be funny, it hurts!

*** The Deaf community often use the term Audism to highlight ableism that is targeted at people who are deaf.

 

“There’s nothing more debilitating about a disability than the way people treat you over it.”
― Solange nicole

 

David Brady missed out again. Mr Brady is the esteemed Chair of Deafness Forum Australia and CEO of Hear for You. He is a staunch advocate for both Deaf and hard of hearing people. He attended a consultation for hearing services and was not provided with access. Puzzling but all too common.

Mr Brady has some rudimentary signing but it is not something he can rely on. He needs assistance to hear through either listening devices like hearing loops or to understand information through captions. These things were conspicuously absent at the consultation. There were, however, two Auslan interpreters. This is great but not if you have a hearing loss and cannot sign. This is the situation for around 3 million Australians of which only a very small percentage use sign language. Estimates range between 7000 and 30 000 people use sign language. Either way the percentage is small.

Michael Uniacke raises this issue in his wonderful article, Disability, Is It Time to Redefine. Mr Uniacke makes the distinction between hidden and visual disabilities of which deafness is obviously one. What this means is that if you saw someone walking down the street, unless you saw their hearing aids or cochlear implant, you would not know if they were deaf. Uniacke points out that for members of the Deaf community this is less the case. This is because through Auslan, which is the name for the sign language Australians use, they are highly visible.

Yet Uniacke also points out that these signing people make up only a small percentage of the population of people with a hearing loss. Uniacke emphasises that the Deaf community are the only disability group that have a language of their own. Some will say they are also the only disability group that have a culture of their own. People within in the Disability community will challenge this and argue that there is actually a Disability culture. That debate is for another day.

Says Uniacke, “In terms of numbers, the hearing-impaired population is a whale, while the Deaf community is a tadpole. In terms of public funding, political influence, and public perception and recognition however, the metaphors are reversed: the Deaf community is a lion, while the hearing impaired are merely fleas. That is the power of visibility, in this case, the power of a visible language.” This is the paradox of funding in the Deaf Sector.

I have made this point often, but out there in the community there are more people that require captioning and listening devices than do Auslan. Yet support and funding for this group is hopelessly inadequate. Organisations, many who should know better, think that to provide Auslan interpreters is enough. I know it is not cheap to provide interpreters but it also means that the bulk of funding is only assisting a very small percentage of people with a hearing loss. That, as Uniacke states, is the power of visability.

Just last week I had a Deaf person contact me because they were attending a workshop organised by a prominent disability programme. She wanted captioning for a colleague and also because the captioning would provide her with a transcript of information presented at the the workshop. Part of the problem for a person who is deaf that uses Auslan interpreters or captioning is that when they take notes, they miss some information.

Many people with a hearing loss have developed a Deaf Skill, which allows us to fill in the missing gaps. This comes from many years experience of only receiving partial information. However, this skill only works if the person is familiar with a topic and its context. It is less effective when you are receiving unfamiliar or new information. Hence my colleague requested captioning so she could access a transcript in lieu of taking notes herself.

So my colleague asked me for assistance to get captioning. I provided her with some contacts. She asked these contacts for captioning and was flatly refused. Why? Because Auslan interpreters were present and this was seen as meeting access obligations.

I would postulate within the audience there were several other people with a hearing loss who had not disclosed this fact. There were probably people for whom English was their second language too. All of these people would have benefited from captioning yet their needs were overlooked.

This is part of the reason that in my last job why I encouraged my employer to book captioning for every workshop or event they put on and only book Auslan interpreters when they were requested. The fact that Auslan interpreters would be provided if required had to be clearly stated on any promotional material.

I take this approach because, in my view, many Deaf people who use Auslan are more comfortable to disclose and request.  The opposite is true for the majority of people who have a hearing loss who do not sign. More often than not they feel embarrassed to request support. It may seem unfair but my view is that limited funding needs to be used to support as many people as possible and captioning does that. It is not a popular view point.

There are many reasons why these people with a hearing loss who do not sign will not disclose. Many are latter deafened and embarrassed to tell people they are struggling. Some are in denial or not realising how much information they are actually missing. Some have been brought up to believe that hearing is superior so they tend not to want to bring attention to their inadequacies. Whatever the reason, these people need support and they are not getting it.

Currently there is a big debate going on within the NDIS about the cut off point for people with a hearing loss when it comes to access. Suffice to say that people who are very deaf, many of whom will use Auslan, will get automatic access.

Those with lesser hearing losses have to  justify their needs. Some who previously were granted access to the NDIS are now having that access revoked. This is because the NDIS believe that they hear too much.

The reasons behind this is, of course, sustainability. The NDIS have to make sure that the funding that they have is targeted at those most in need. However, many people who have a hearing loss and who do not meet the NDIS criteria are struggling.

They need their hearing aids and they need listening devices. This technology is extremely expensive and many cannot afford it. Some require captioning in certain situations. Many are isolated in the community because they can only really function optimally when there is little background noise and where there are few people.

Put these people into situations where the environment is extremely noisy and where many people are talking at once they are extremely disadvantaged. This causes great stress and is one of the reasons why there is a higher incidence of mental health issues among people with a hearing loss. It is a mystery why the needs of these people receives scant recognition.

There may also be a number of people who are Deaf who use Auslan for whom the NDIS may deem as hearing too much. It will be interesting to see what happens in the coming months if these people have their access revoked. I suspect the Injuns will revolt if this becomes common place.

In a nutshell, people with hearing loss and who do not sign get a raw deal. Their needs are very misunderstood. An access criteria based almost solely on how much a person can hear is fraught with danger. I have no desire for Auslan users to lose their access, They have fought hard for it and it is needed. I only desire that these millions of non-signing people with a hearing loss get recognition for their extreme disadvantage and get the support that they desperately require.

This week was Australia’s Disability Discrimination Act’s (DDA) 25th birthday. At 12 pm, on the day, Australia’s people with a disability commenced one minutes silence to mark its passing.

Twenty five years ago Australia passed a law that effectively sold out the rights of people with a disability. And so we mourned.

It was not always like that. When the DDA was passed there was much optimism. Indeed in the early days of the DDA much was achieved. You see people did not really understand how the DDA worked. They thought that they could not ever again discriminate. So in a mild panic began to grant access.

Little gains began to happen. Transport became a bit more accessible. Captioning and interpreting for the deaf started to become more common and accepted, access to university and further education improved, buildings became more accessible and so on. As a consequence people with a disability felt that they at last had recognition and a bit more power.

But very soon people without disability cottoned on that the DDA was actually a toothless tiger. As a law it was terrible. The paper it was written on made good toilet paper. Fitting really given that the DDA is a shit law.

The DDA has this weird concept of reasonable adjustment. But a reasonable adjustment really has no definition. It is supposed be something that a person or organisation does that provides better access and inclusion for people with a disability.

But one persons reasonable is one persons too much and visa versa. Those in the know will know that the rich cinema chains are protected from providing open captions to all sessions because the awful Captiview system is seen as a reasonable adjustment, even if it does not work properly – Those not in the know, watch the video at the end of this article.

Let’s say a Deaf person wanted interpreting for his/her hospital appointment. Reasonable one would think.  But not according to the hospital. For them reasonable might mean a family member facilitating conversation or the doctor writing notes to the deaf patient. Technically either interpretation could be right. Sounds daft doesn’t it? But that’s how things often pan out.

If the hospital can demonstrate that they have consulted with the deaf person about their needs this is  seen as meeting a legal obligation.  The hospital can simply say, “We asked, we talked, we offered alternatives but could not agree. Silly deaf person wouldn’t accept our offers of support. And gee, they said we would have had to pay for the interpreter, no way!”

Now I know I am being flippant but really this is what happens. Organisations, hospitals often, just simply refuse to provide. (Some are actually very good and willing to provide access, so if you are reading this and work in one of those good hospitals please do not take offence.)

If Deaf person and hospital cannot agree what  next? Well Deaf person has to make a complaint to Australian Human Rights Commission or the State Equal Opportunities Commission. Complaint received conciliation is then organised between Deaf person and hospital. But here’s the thing:

1. Before complaint is accepted deaf person must show that they made attempts to resolve the issue with the hospital.
2. Hospital has no obligation to attend the conciliation and can, if they want, simply refuse to participate.
3. By this time Deaf persons appointment is long gone and for all we know they poisoned themselves by taking the wrong drug dosage because they did not really understand what the doctor said.

What happens next if organisations like a hospital refuse to come to the table? Well the Deaf person has to go to court to try and get a decision made as to what the hospital must provide. The cost of this is apparently capped at $20 000 for the people with a disability who choose to go down this path.

Because people with a disability, 45% who live at or below the poverty line, just have a spare twenty grand lying around. Of course hospital with its high flying lawyers don’t have this problem. So usually what happens is everything stops there. Deaf person gets nothing. Hospital gets away with virtual blue murder. Replace hospital with any similar organisation, like a Council for example, and you can write this example in exactly the same way and it will be just as relevant.

I know this for a fact. I worked for a council out the very East of Melbourne and tried to get them to the table for discrimination, victimisation and bullying. I complained to state Equal Opportunity and the council simply refused to come to the table. Next step court. With all the risks and stresses that would have involved I simply dropped it.  It is just too hard. But this is what we were served up when the DDA was passed 25 years ago.

Then we have the standing joke which is Unjustifiable Hardship. An organisation simply needs to say that they cannot afford it and usually they get off scot free.  “I need interpreters” The response can legally be  “Love to but sorry I cant pay cos I cant afford it.”

You mark my word any number of organisations hide behind this loop hole in the law. Sure you can take them to court and get them to justify that they cannot pay but who can afford that? There is the likelihood, and it has happened often, that the courts simply side with the organisation or person claiming hardship. Ok, I know there have been some wins but the risks are enormous and most people with a disability do not have the resources or wherewithal to be able to take things all the way to court.

Put simply, the DDA offers virtually no protection, whatsoever, to people with a disability.

And then we have this absurd loophole in the law where multi-billion dollar companies can claim exemption to discrimination. They can ask for exemptions to modifying buildings because they need more time to plan or get a budget together for it. They can ask for exemptions to having to provide interpreters or captioning because they are in “establishment stages.” and so on. The sky is the limit really for what they can claim exemptions for.

So as a consequence, for example, multi billion dollar media companies have a five year exemption from having to meet captioning requirements for new digital television stations. Why? I have no idea. It’s all about protecting business it seems. People with a disability, well, they have waited this long a few more years will not hurt will it? (Please note the dripping sarcasm.)

But this is Australia today. Take away the NDIS and what have we?

1. 45% of people with a disability live at or below the poverty line.
2. A system where access can be whatever a person deems it to be, even just providing someone to write notes for a person. And then they can claim, if they want, unjustifiable hardship cos they have no money to pay for the note takers.
3. A system where only 53% of people with a disability are actually employed. Worse than such economic giants like Mexico or Greece.
4. A system where an accessible tram stop can be serviced by an inaccessible tram because the Government is just very slowly replacing old trams with accessible ones.
5. A system where only two people in a wheelchair can fly on a plane at any one time.
6. A system where someone as famous as Kurt Fearnley actually crawled through an airline terminal rather than be humiliated by being pushed around in an ancient push chair.

And this is Australia. One of the richest countries in the world, the land of the fair go. Meanwhile politicians are getting $275 a night to stay at their wife’s house.

This is Australia’s shame. Join me in another minutes silence to mourn the continued existence of the DDA and the total lack of willingness of anyone in power to reform it.

And finally – This is what our DDA delivers ….