The Invisible People

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.


A Day of Mourning

mournThis 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 ….