The Parent Trap

Picture is of a lady stressed out. She has keeled over on her desk and her head is trapped in her laptop.
Picture is of a lady stressed out. She has keeled over on her desk and her head is trapped in her laptop.

Being a disability advocate is both rewarding and frustrating at the same time. As an advocate, when you have a win it’s a wonderful feeling. All those emails, phone calls and discussions  finally bear fruit. For example I have had a personal campaign against Foxtel for many years. Last year I sent them an email bemoaning the lack of captions on Hells Kitchen. Admittedly a crap show, but one that I am hooked on. I pointed out to Foxtel that this show already has captions because it’s made in America and the American’s with Disabilities Act demands it. Argued that because of this that there was no excuse for the lack of captioning. After a few emails they responded that they had got captioning for the next episode and upgraded my package at no extra cost. I was watching Hells Kitchen last night, as I have for the last few weeks, and every single episode has been captioned. It is but a small thing but it is very satisfying to know that my little piece of input has created this kind of improvement to access.

At the same time advocacy can be hellishly frustrating. Many years ago I was part of an active deaf student group in Adelaide. The group supported each other and lobbied to Universities in Adelaide for improved access, mainly through Auslan interpreting. Back in the 80s and early 90s there was very little such support in Adelaide. We had to rely on buddies and poorly paid note takers. Over a period of time things changed, particularly from 1993 onwards after the Disability Discrimination Act came into play. The DDA is virtually worthless now but back then it had a positive impact in creating moves to improve access.

I had meetings with my MP and the State Education Minister, and later Premier of SA, Mike Rann. I lobbied regularly to University disability support personnel. I wrote several letters to the Vice Chancellor explaining my difficulties. Eventually in 1993, my last year of study, we had a win and interpreters were provided. It was very satisfying but no sooner had I had this win than the academics started moaning about the presence of interpreters. Said one, “You can’t have interpreters when you go to work so why should you have them in my class?” I actually boycotted the said academics class and just completed his subject through reading and completing the assessments. He threatened to fail me but never did. It is this constant battling that makes advocacy so frustrating and tiring – Even when you have a win.

Deaf education has always been a bit of a passion of mine. I actually studied to be a teacher of the deaf for a time. But three broken legs and relentless partying put paid to that. Nervertheless, I have always been appalled about the state of Deaf education. When I was just 19 years old I wrote a letter to the Parents of Hearing Impaired group for their newsletter. I had witnessed, at my old school, relief teachers being employed as teachers of the deaf. I know not of their qualifications but I know they could not sign to save their lives. These teachers were expected to support kids in the classroom and communicate with them. The kids could not understand them very well. What is worse the teachers had no EFFING idea what the kids were saying. It was a recipe for disaster. I remember my old principal confronting me about the letter. Let’s just say he was not happy. So it was with great interest that I took part in the Deaf  Education Forum hosted by Deaf Victoria on Sunday 20th March.

The main speaker, Julie Phillips from the Disability Discrimination Legal Service, basically implored participants into action. She insisted that the law was on our side. She insisted that the Education Department had an obligation to provide full access. She argued that they had enough money and that we should not accept finance as an excuse for no access. She was passionate, almost gungho. It was clear, to me anyway, she wanted us all to take on the Eduction Department and make them provide full access and quality education for deaf kids.

And I agreed with her 100 %. BUT – what of the parents who are fighting this battle? Well one got up and explained she had been fighting this battle for her deaf kid for many years. She has had to move schools and even when she had support the support was inadequate. She explained how principals would constantly argue that they were providing the best support possible with the money available, even though the mother knew this support was inadequate. She explained how hard it was for a parent to have to fight the professionals and how intimidating, even bullying, these professionals could be.

It was one thing for Ms Phillips to implore us all to get out there and fight the system but the harsh reality is that fighting the system takes its toll. As the mother said, it impacts on your mental health and even your relationships. It’s never ending and stressful. We all know that the Education Department is in the wrong BUT taking them on is hard work and there can be severe consequences for the people that do so, both personally and mentally. Hell I know one parent who moved from one end of Australia to another to get better access for her daughter and spent over a decade fighting the system. She lost and won court cases. The win was great but the toll on her health and her relationships was immense.

It is this toll that we often forget. Advocacy, particularly self advocacy and advocacy for close family members, is extremely stressful. You are fighting and complaining about the same things over and over again and often with little to show for the fight. It is not easy and while the wins are rewarding we should never underestimate how hard it is and the impact it can have on the individuals concerned. As one mother commented on Facebook after attending the forum – “Even though I am aware of the dismal outcomes for Deaf students in education, it is still, to this day overwhelming and emotionally draining when it is presented in plain facts.” 

For some it just never ends. For parents- it is the parent trap.

 

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Paul’s Point of View – by Paul Bartlett

winners
image is of stylised people of different colours marching as in a parade. At the far left there is a girl at the end holding some balloons. Two men in the middle are playing trumpets. Three are holding a banner that says AND THE WINNER IS.

Australians all let us rejoice,
For DIS A BIL IT EEEE
We’ve crap access despite our toil,
Our homes a tragerdeeee;
Our land abounds in barriers
Oh hell they’re everywhere
In history’s page, let us say
Access Australia – NOT!
In painful strains then let us sing,
“Access Australia – NOT!”

This satirical adaption of the Australian Anthem was posted  in the article Access Australia Not. In this article The Rebuttal took aim at Australia’s shoddy provision of access for people with a disability. Mostly the article touched on deaf issues  but also mentioned lack of access to public transport for people with a disability. With nearly 1000 hits it was a very popular article that hit a chord with many readers.

Not so Deaf reader, Paul Bartlett. Paul lived in the United Kingdom for 19 years. He has recently returned to Australia with his partner, Stuart. He begs to differ that Australia offers poor access, particularly to people who are deaf. He thinks that access for Australians who are deaf is on par with access for people who are deaf in the United Kingdom and in many cases even better. This is Paul’s Point of View.

I have just returned to live in Australia after 19 years away in the UK. After being back for 3 months I think I can confidently say that in Australia, access for deaf people is excellent!

Yes, I believe I am qualified to say this. 19 years away is a long time and in this time, I worked for organisations specialising in services and access for deaf people so am very familiar with accessibility issues. I get annoyed when others go on about how Australia’s deaf access is very bad, we are behind the rest of the world etc. This is just not true and Australia is way ahead of the UK with many things.

I cannot speak for other disabilities nor can I comment on how Australia rates against places like Canada or the USA. But the UK is generally rated as the most deaf-friendly country in Europe. Here’ I will qualify my statement providing a range of scenarios where deaf access is impacted and how each country fares.

Television

In Oz, just about everything on the traditional 5 terrestrial channels is subtitled, though the additional digital versions of these channels can be variable in this aspect. This is similarly the case in the UK. In the UK, broadcasters are obliged to provide a specific amount of signed TV, so the UK has the edge. I cannot comment on Pay TV as I do not subscribe to Foxtel or similar. As for Internet TV, I only subscribe to Netflix and Ororo.tv which are excellent with regard to the provision of subtitles and cannot comment on other internet TV providers. Score. Oz 0 – UK 1

Telephone

In the UK they have Text Relay which is accessible in 2 ways, through the use of TTYs, and through the Internet. However the Internet version still requires you to call the relay service through the landline or the mobile line in addition to the internet connection, which is a pretty cumbersome way of doing things.

And there is no public funded signed relay (VRS). In Oz, the NRS has a superior internet relay service and a video relay service which I’ve used many times, and love it. Score Oz 1 – UK 0

Cinema

I had never used Captiview until I arrived back in Oz and now often go to the cinema to use it. I have never had a problem with it and quite like it. Captiview is very empowering because it is available every day at any time you want with very few restrictions. Open captions for specific movies are regularly available as well.

In the UK, subtitles are open and available at practically all cinemas but screening times are limited and the cinemas do not always publicise them, you have to go to a specific website to find out where and when your favourite movie is showing with subtitles hence there are a lot of restrictions on the availability of subtitled movies. Score Oz 1 – UK 0

Private Health Interpreting

In Australia we have NABS which is a fantastic service and places the deaf person in control over booking interpreters. In the UK, you have to ask the receptionist to book interpreters for you and they do not always know how to do it or know where to go, and things do not always turn out the way you want them to. Score Oz 1 – UK 0

 Public Health Interpreting

I have not yet used the public health system so cannot comment. In the UK, it can be difficult booking interpreters in public hospitals for two reasons, you are asked to turn up at a certain time along with 20 other people so do not know exactly what time your appointment is, and this impacts on the interpreter as well, as they are usually booked for limited times, and the receptionists there often do not know how to go about booking interpreters. Score Oz 0 – UK 0

Banking

The banking system here in Australia is fantastic and so accessible. You do not really need to communicate with anyone once you have set up your account as everything you need to do and know is available on an app or on a website, and if you have a problem, you just go into your branch and have a word with a teller.

Furthermore, in Oz, you do not need to wait weeks and weeks before you are given internet access to your bank after opening your account, this is arranged on the spot. In the UK, bank branches do not like making calls on behalf of deaf customers such as calling their bank to cancel a card, report a lost card etc, and you need to phone them through the text relay service and you are always forced to wait a long time before speaking to someone.

Data Protection legislation in the UK is a nightmare for deaf people to get around. Score Oz 1 – UK 0

Theatre Interpreting

In London, there is a culture of theatre interpreting and several businesses specialising in this have been running for many years. And outside of London there is also a thriving theatre interpreting culture.

In Oz, theatre interpreting is mostly provided by Auslan Stage Left and their website shows a long list of shows, but theatre interpreting does not seem to be as widely promoted and culturally engrained here as it is in the UK. Score Oz 0 – UK 1

Government Services In the UK

If you want to talk to someone in any department in the Government such as tax, drivers licence etc, you call them and are placed on a long queue. This is the only way you can contact them apart from writing a letter or filling in form. In Oz, you just drive up to your local government service office and deal with them there and then.

If the person behind the counter can’t sign, that’s OK, at least you can see them and they are not hidden behind a phone line. Score Oz 1 – UK 0

Universities

Interpreting at Universities is fantastic, at least at the one my partner has enrolled at. They provide interpreters and ask few questions, and they don’t ask you to provide funding. In the UK, limited funding for university access is provided via a range of different channels and you have to apply for it yourselves which can be a bit tricky. Score Oz 1 – UK 0

TAFE

In the UK, TAFEs are called Colleges and support for deaf people there is very good. I cannot comment here as I don’t know what it is like in Australia in this regard. Score Oz 0 – UK 0 Workplace

Rebuttal Note: TAFE interpreting in Australia is not very good. In recent years TAFE  funding has been cut savagely. Many TAFE institutes receive little State Government support for disability support and struggle to meet the costs of interpreting. It is not uncommon for TAFEs to expect the deaf student to make compromises and not provide interpreters for the full duration of a course. It varies from TAFE to TAFE, particularly for dual sector TAFEs that are also attached to a University. If The Rebuttal was asked, based on Paul’s assessment we would give this one to the UK

Employment Interpreting

In Australia, EAF funding is capped at $6,000 per individual. In the UK, a cap of $82,000 was introduced in October 2015. This is called Access to Work and was previously uncapped. Score Oz 0 – UK 1

Video Remote Interpreting

This is internet interpreting used in lieu of booking on-site interpreters. In both Oz and the UK, this is a growing industry and neither has the edge in this regard. It needs to be remembered that the UK has no public funded VRS so several companies have been set up offering both VRS and VRI whereas in Australia just about all the interpreting agencies offer VRI. Score Oz 0 – UK 0  Rebuttal Note: It would be interesting here to compare internet speeds and how this impacts on delivery of VRI services.

Hearing Aids

In Australia there is gap with regard to free hearing aid provision between the ages of 25 and the day you go on a form of Government pension. In the UK hearing aids are provided to deaf people of all ages. Score Oz 0 – UK 1

Deaf Access Equipment in the Home

This refers to things such as TTYs, flashing door bells, baby cry alarms, pagers, alarm clocks, smoke alarms etc. In the UK all these are free and in Oz, only TTYs and smoke alarms are free. Score Oz 0 – UK 1 Winner – Oz!

The final score is Australia 6, the UK 5, with 4 draws. It is therefore unsurprising that I get annoyed when people go on about how lousy Australia’s access is when compared to other places in the world etc.

As far as I am concerned, things are very good over here, dare I say fantastic. It is just that Australians do not seem to appreciate what they have over here, cultural cringe continues to raise its ugly head.

There are other things which the UK is excellent at but these are specific to the UK with no equivalent in Australia due to the differing socio-political systems, and this paper is specifically about deaf related access.

Many social workers in the UK sign or are deaf themselves, and in Australia these would be case workers etc at the Deaf Societies, as Australia does not have a Social Worker culture. Another is the free public transport passes in London for deaf people but this is Londonspecific. In Oz, there are concessions on public transport for disabled people here as long as they are on some form of Government payment.

And there is DLA, a non means-tested government payment which is being superseded by another one called PIP. There is no equivalent in Oz. And there is the fantastic Deaf media and film industry in the UK, which just does not exist in Australia due to the different funding system.

Kudos are due to those who made all this happen. Deaf Australia and their state associations, the Deafness Forum, and all the other people who lobbied and otherwise worked hard.

To summarise, we do have things damned good over here in Australia, we are just as good as or even superior to the UK in regard to access for deaf people. Of course there are other things to consider such as various funding cuts and the roll-out of the NDIS but the UK has been cutting back on spending on access for disabled people the past few years. My advice is, get to appreciate more what we Deaf Australians have here at home!

 

The Rebuttal say – By all means appreciate the access you have but never accept it as enough. We need to aim for as close to full access as we possibly can. We are a long way from that. … WE CAN AND SHOULD DO BETTER.

What’s your view?