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Matt Laffan Memorial Address (2009)

Disability Disability Rights

Matt Laffan Memorial Address

Graeme Innes AM
Sydney University Law School
23 June 2009

I'd like to start with Matt in his own words, from the Australian Story documentary The Laffan Legacy

[Clip from Australian Story]

[Note: Full transcript is also available]

MATT LAFFAN:

I once used to say to some mates of mine that all I really wanted was 24 hours without a disability. I just wanted 24 hours so that I could do certain things. Since then, I've got a little greedy and now I want one week. And during that one week there'd be hell to pay, because Sydney just would not be big enough. I think the night club scene would be in a world of trouble, because dancing is something I'd really like to do. There'd certainly be a rugby match I'd have to get involved with. I'd go running with the old man. I think I'd pick Mum up and put her over my shoulder and run down the end of the block with her just to stir her up.

Peter Fitzsimons said "and that was Matt - fun, family oriented, and with an extraordinary zest for life. Physically, life had dealt him a pair of red twos and a couple of black fives, but he always played like he was holding four aces."

I can't add too much to those comments.

Matt was a fellow-campaigner on disability issues; a fellow aspirant for local politics (except that I was unlucky enough to be successful in that particular aspiration...); a man with a great zest for life - both what he could put into it and what he could get out of it; and a good friend.

So I'm honoured and proud to have the opportunity to give the first of these Matt Laffan memorial addresses. And to do so here, at the University where we both gained our law degrees, is a further honour.

I begin by acknowledging the traditional owners of the land on which we meet this evening.

The Sustainable Communities Network, based at Edith Cowan University, describes a sustainable community as one:

that has an explicit systemic approach to the integration of ecological, social, cultural and economic features to meet the needs of the present, without compromising the needs of the future.

When I think about the needs of people with disabilities in our community, it seems clear to me that a sustainable community is one that does not compromise the future of our children or ourselves, by constructing buildings and services that are accessible only to those who do not have a disability. And a sustainable community is one that does not compromise the future of our children and ourselves by perpetuating the myths in our community about people with disability, and by continuing to not welcome us into the broader community. It is not just the 20 % of people currently identified as having a disability that will benefit from a more accessible community. We are all well aware of the significant effect that an ageing population will have on our community over the next 20 to 50 years. To put it simply, in the context of our changing demography, a community that is not accessible, and that does not welcome people with a disability, is not sustainable.

I want to talk tonight about inclusion - making our community accessible, and welcoming people with disability.

I want to tell you about the struggles - some of the successes and some of the failures - and provoke you - with the stories I tell - to take up, or continue, your efforts towards ensuring that Australia is a more inclusive community for people with disability.

This was a goal towards which Matt Laffan worked during his life. It wasn't the only goal - Matt's life was much broader and richer than that, and he had a range of interests. But securing a more inclusive community for people with disability was one of the interests we shared, and seemed to me a most appropriate topic for this first Matt Laffan memorial lecture.

It's also appropriate given the date. On 23 June 1979, 30 years ago, the Eastern Suburbs railway was opened. That opening was "spoiled", in the view of some, by people with disabilities protesting that the railway was not accessible to them. This protest was the first in Sydney about access issues, building up to the International Year of people with disabilities two years later. It's always hard to pinpoint the start of a movement, but this was probably one of the catalysts.

Who was Rosa Parkes? Perhaps recollection would improve if I said that she refused to sit at the back of the bus?

In the 60s, various governments in the United States spent millions of dollars providing a public transport system, but in many places if you were black you could only ride at the back. Rosa Parkes action was one of the catalysts for the civil rights movement.

In the 60s and 70s, Aboriginal people were allowed to drink in hotels, but only in the public bar. Sadly, in more isolated areas, this continued well into the 80s and 90s.

In the 50s and 60s, women were not allowed in to the public bars of hotels. They could go into the lounge, or the ladies lounge.

Late last century, and in some places during this century, women were not allowed to vote. And again, in some places it is less than 100 years since women have been allowed to receive a university education.

Of course, if these things occurred today, we would be outraged. These types of discrimination have been stopped by changes of community attitudes, reinforced by State and Federal legislation.

The example of women's access to the public bar is an interesting one though, because, unlike most of the other discrimination, it was often justified on the basis that "ladies" should not have to put up with the indelicacies which occurred there. In other words, it was "for their own good", and done as a very patronising form of exclusion. This is exactly the type of exclusion which people with a disability have experienced for many years, and sadly, unlike gender and race discrimination, we still have a long way to go to redress it.

Let me tell you a story. It's a story about another university, but it could just as easily have been this one. Bradley Kinsela completed his degree in human services, in the social sciences school of Queensland University of Technology in 1997.

QUT conducted its degree ceremonies in the Brisbane Concert Hall. It's a tiered venue, and at the commencement of the ceremony, the graduands walk down steps to their seats in the front row. They then walk up steps to the platform where they receive their degrees, and back down steps when they have finished. There is no other access to the hall or the platform.

Bradley uses a wheelchair. The only way in which he could participate in the ceremony was to sit backstage behind a curtain, whilst his colleagues processed in and sat in the hall, come on to the stage to receive his degree, and then go and sit backstage behind a curtain again.

Bradley's course co-ordinator wrote to the university in 1994, pointing out that if the university wanted to fully include students with a disability, this issue would need to be addressed. The Commonwealth Disability Discrimination Act had been passed in 1992, and similar Queensland legislation followed several years later. No action was taken.

Bradley lodged a complaint under the Disability Discrimination Act. In her decision on that complaint, then hearing commissioner now Queensland Supreme Court judge Roslyn Atkinson said in part:

The end product of any university education is expected to be a degree or diploma, undergraduate or postgraduate, and universities have traditionally had degree awarding ceremonies to recognise the students. The ceremonies are usually very moving for the family and friends of the graduating students, and the last opportunity where the student group is together as a student group.

She went on:

If the venue is changed, Mr Kinsela will be able to participate in the processionary and recessionary marches. He will be able to sit with his fellow graduands during the graduation ceremony, and he will be able to progress with his fellow graduands from the body of the hall to the stage for the actual presentation of the degree. These, for the reasons I set out earlier, are not trivial matters, and all go to the undoubted goals of the Act--inclusiveness, accessibility and availability"

Commissioner Atkinson found the complaint substantiated, and directed QUT to provide facilities for the complainant's graduation ceremony that would enable him to participate in the same way that any able-bodied person would participate.

I wasn't at the ceremony when Matt Laffan received his law degree. But I can imagine how proud both he and his family would have been about what he had achieved. Just like Bradley, though, here at Sydney University all of Matt's cohort would have processed into the hall, and walked up on to the platform to receive their degrees from the Chancelor or Vice-Chancelor. But Matt, like Bradley, would have sat on his own behind the curtain. Or alternatively, the Chancelor would have come down the steps and presented Matt's degree in the body of the hall.

What messages does that send? Firstly, it means that many of the audience could not see - or see clearly - Matt enjoy his few seconds of fame - although I'm sure he made up for that later.

And secondly, the clear message is: you people without disabilities come and join we important people up here on the platform; you people with disabilities stay down there and we'll be charitable and bring your degree to you.

That's the message Sydney University is still sending graduands with mobility disabilities, and anyone in the audience watching. This most important window from the University to the outside world is sending the message- if you have a disability you're different.

In 2000 I was asked to give the occasional address at a Sydney University graduation ceremony. I happily agreed. Some weeks before the ceremony was to take place, though, I advised that - as the platform of the Great Hall was not accessible - I would have to give my address from the body of the hall.

I told Bradley's story. I then said- "I could, if I chose, walk up these stairs in the same way as most of you. But I am not prepared, as a matter of principle, to speak from a platform which excludes people with mobility disabilities. I cannot support an attitude which means that Rosa doesn't just sit at the back of the bus, she can't get on it at all." Dame Leonie Kramer, the then Chancelor, was - to use a Victorian royal expression - not amused.

I haven't been asked back since. However, in a recent letter from the new Vice-Chancelor Dr Michael Spence, I am informed that a ramp has been put in at the entrance of the Great Hall, and a stair-lift will be installed this year, so that people with mobility disabilities will gain equality in this respect. That's very good news, though well over due.

[Clip: Australian Story]

MATT LAFFAN: I guess when people ask me how has it been growing up with a disability or, in fact, living with a disability, it's a little bit like, for me, that great Australian film 'Babe' and the pig, the pig who didn't realise he was a pig. For me, it's very much the same. I'm someone living with a disability and have always done so, but I don't really realise I have a disability until a situation or people point it out to me.

Where and how a person receives their degree is just one example of the much broader problem of exclusion that people with a disability face every day of their lives. It's often done with the best of intentions, but the way to hell is paved with good intentions.

People with disabilities have been institutionalised for years - and some still are - with the justification that "it is the best place for them" or "they wouldn't survive in the community".

People with disabilities have been sent to work in sheltered workshops, receiving in a week what some of us receive in an hour, because "they are happier with their own kind".

When national unemployment sits around 5 %, the rate for people with a disability is up to 50 % : 10 times the national average.

People with disabilities are described in conversation, and in the media, as sufferers, as incredibly brave, or as achieving against the odds. These perceived bestowings of praise are compromised, because they are patronising, and reinforce the charity mentality.

The power of people with disabilities is constantly taken away, and we have to fight to retain it. We are often prevented from taking what others perceive to be dangerous risks in the name of our own protection; limited in our expectations in the guise of reality; and given narrowed alternatives for the rest of our lives in the guise of good professional advice. And if these things are challenged, then we have a chip on our shoulder, or we're not professionally qualified so we wouldn't know.

You may say that this is an extreme assessment: I don't think so.

I was amazed nine years ago - when Bruce Maguire lodged a successful discrimination complaint against SOCOG for not providing the Olympic ticket book in Braille - how many people said to me "why would you want the ticket book in Braille anyway- what's the point of you going to the events if you can't see them". As an avid cricket-goer all of my life, whose spent far too many Saturday and Sunday afternoons watching interstate and test cricket at the SCG and the WACA, I found this view incomprehensible. If you just wanted to see the games you'd get a much better view on television. But wasn't the SOCOG message "there's nothing like being there".

I agree that attitudes are changing, but the pendulum has a long way to swing.

Let's look at disability, how prevalent it is, and the situation in which Australians with disability live. Because governments and the broader community face an urgent challenge to transform the situation of Australians with disability from one of poverty, disadvantage and exclusion to one of equal wealth, equality and welcome.

According to the Australian Bureau of Statistics, in May 2004 one-in-five Australians reported a disability. Almost 4 million people reported a disability, with the rate similar for males and females. The rate increased with age, reaching 81 % for those aged 85 years and over.

So disability (whether temporary or longer term) is a normal part of life.

Statistics vary a little, coming from different surveys and methods of collection. But they indicate around 1 in every 5 Australians, or over 3 million people, experience a mental disorder of some kind; 14 percent of the community, or around 2,6 million Australians, have a physical disability of some kind; over 1 million Australians have a significant hearing impairment, with around 30'000 Australians totally deaf; around 300'000 Australians have a substantial vision impairment with around 20'000 totally blind; and around 2 percent of the population, or 400'000 Australians, have an intellectual impairment. So its no surprise that making adjustments to accommodate disability is a normal part of life- in education, employment, access to buildings, access to community services etc.

One million Australians experience profound or severe disability - that's the population of Adelaide.

2,5 million Australians are caring for people with disability - that's the population of Adelaide plus Perth.

Where a person with a disability lives in a household, that household is living on less than half the median income of Australian households. And the cost of disability is estimated to account for 30% of the household income.

A report, The geography of disability and economic disadvantage in Australian capital cities, showed that disability among people aged under 65 was more common in communities where residents had fewer economic resources. For example, 3,1 % of people living in the most disadvantaged fifth of local areas had severe disability, compared to 1,3 % of those who lived in the most advantaged fifth of local areas. Some city-specific examples included:

  • Sydney, where 2.0 % of residents had severe disability, ranging from 0,7 % in Mosman to 4.0 % in Inner Parramatta.
  • Melbourne, where 2.1 % of residents had severe disability, ranging from 0,7 % in Southbank-Docklands to 3.9 % in Hume-Broadmeadows.
  • Brisbane, where 2.3 % of residents had severe disability, including, for example, 0.6 % in the Inner City compared with 5.8 % in Redland-Balance.

People with disability often have lower average incomes than people without disability, and their disability can impose extra costs on individuals and their families.

On the other hand, risk factors for many chronic diseases are higher among socio-economically disadvantaged people, and people working in lower status jobs can face greater occupational hazards (such as serious workplace injury) that in turn contribute to higher rates of disability,

Dr O'Rance, the author of the report, said.

People with a disability are less likely to have completed a higher educational qualification than those without a disability. One-in-five people aged 15-64 in private households who reported no disability had a bachelor degree or higher, compared to one-in-eight people - 13 % - with a disability.

Other findings include:

  • Many people with disabilities were not in the labour force, with participation decreasing markedly with greater levels of disability. Labour force participation rate were between 15 % and 50 %. The rate for people without a disability was 81 %.
  • People with a disability who were employed, were more likely to work in a part-time job - 37 % - than those who were employed and did not have a disability (29 %).

So, by any measure, people with a disability are disadvantaged.

[Clip: Australian Story]

MATT LAFFAN:

For people in my situation, well, there are two choices. There's the choice that you embrace life and you participate, or you don't. The alternative, don't, I just can't comprehend what that would mean. I cannot imagine not using my brain. I cannot imagine not being surrounded by intelligent, interesting people, and I cannot imagine not having a goal in life. When I was born I was given time to live, a very short time. And I was given one week. And so I guess when I took in those first sharp breaths, something went deep inside of me other than the oxygen. There was this will to live, this knowledge that life really is about a short race and making everything, making what you can of every opportunity that comes your way.

As with any movement for change, there are examples and advocates. We are often seen as rabble-rousers, or difficult people just wanting to complain or make a point. In reality, we're just trying to get on with our lives, and participate in community activities like everyone else.

I've already mentioned Bruce Maguire who lodged the complaint against SOCOG because the olympic ticket book was not in braille. His complaint also referred to the inaccessibility of the SOCOG website. All that Bruce wanted to do was buy tickets so that he and his kids could go to the games, and be able to check on progress in events so that he could discuss them with his kids. A pretty reasonable goal for a dad, I would have thought.

And Bruce's efforts have brought some great dividends. Whilst access to the internet is not perfect for people using screenreaders, it's far more accessible than it was, opening up great employment and other opportunities for people with disability.

We come in all shapes and sizes, and with different motivations. In Wollongong in the 80s there was Gwenda Woods, a woman who used a wheelchair, and who was arrested for the cultivation of marijuana. she had a physical disability which caused her continuous pain, and she used the marijuana for pain relief. She lodged a complaint on the grounds of her disability when the police station to which she was being taken for charging was not accessible to a person using a wheelchair. For that matter, neither was the court-house, or the prison to which she was sent when she refused to pay her fine.

Gwenda Woods was a tireless advocate for access, also taking on the Wollongong City Council about access problems in the Wollongong mall.

However, whilst Gwenda's initial complaints against the justice system were not resolved, they led to a major programme over the last decade or so to make the justice system in NSW far more accessible to a wide range of people with disabilities. Many of our courts are now more accessible for people with physical disabilities, and include hearing loops to assist people with hearing impairment.

But the story regarding the NSW legal system is not all good. People who are blind or deaf are still barred from serving on NSW juries. This is despite the fact that the then Attorney-General, Bob Debus, referred this issue to the NSW Law Reform Commission for investigation in 2002. The continuing exclusion of blind or deaf people from juries is interesting, particularly in light of the study conducted at Macquarie University, which found that a group of people who were deaf, had an equal understanding of a criminal trial judge's summing up for the jury conveyed through a sign language interpreter, as a group of hearing people who listened to it. Sadly, neither group understood the summing up all that well, but that may have had more to do with the complexity of the evidence, and the ability of the judge, than the characteristics of the people in the jury.

However, the NSW Law Reform Commission shirked its responsibility on this question. It took almost four years to deal with this reference. And then the NSW Government joined in the shirking, sitting on the report for eight months without tabling it in Parliament, and having tabled it done nothing about it. People who are blind or deaf should be given the equal responsibility of all other citizens to serve in the group of their peers, judging innocence or guilt. I call on the NSW Government now, as I have on a number of previous occasions, to make the necessary changes to the law.

I can't leave the justice system without telling you one of my experiences as a member of the Residential Tenancy Tribunal. Walking into my local ship chandler to buy something for my boat, the woman at the counter said "I remember you from the Residential Tenancy Tribunal." I was never certain how to deal with such encounters, and the concern must have shown on my face, as she continued "Oh, it's all right, you found in my favour." She went on to tell me that--as a student - she normally just wore jeans and a t-shirt. But that day, because she wanted to make a good impression, she dusted off her best dress, and spent half an hour on hair and make-up. She and her father walked into the Tribunal and, seeing me accompanied by my guide dog, her father turned to her and said "well, that dressing up was all wasted effort."

On a more serious note, one of the major issues faced by people with disability, is the attitudinal barrier. There are many examples of this, the latest in today's Sydney Morning Herald. In a speech in the NSW Parliament last week, opposing the Bill to merge the offices of the Public Trustee and the Protective Commissioner, the shadow Attorney-General Greg Smith type-cast clients of the Protective Commissioner - usually people with mental illness - as dangerous, and said that there would need to be security guards in every office which they visited. As it happens, the Office of the Protective Commissioner was for years in the same building as the Australian Human Rights Commission, and I'm sure I shared elevators with the Protective Commissioner's clients every day. I haven't felt endangered. But such negative steriotyping reinforces the "difference" of people with disability.

Let me talk about another person who just wants to get on with his life. Greg has been employed as the website co-ordinator for an online bookstore for twelve months. Their office is on the eighth floor of a fifteen-storey building.

Greg - who uses a wheelchair - loves his job, but is embarrassed daily by having to go to the ground floor, and ask at the security desk for the key to the one accessible toilet in the building. Each time he wheels into the foyer he's greeted with a cheerie "key to the toilet Greg", so his private needs are publicly shared.

The building is about to be refurbished, and Greg knows that a unisex accessible toilet is not to be included in the bank of toilets on his floor. He correctly believes that this is a requirement under the Disability Discrimination Act, but is loath to risk his job by lodging a complaint.

The embarrassment and frustration is finally too much for Greg, and he resigns from his job. He is added to the high number of people with disabilities who are unemployed.

I tell this story to demonstrate the impact of people not having safe and dignified access to buildings, and the facilities within those buildings. This is why I, and my predecessors in this role have--in conjunction with State and Commonwealth regulators, the building industry, and the disability sector--been working on the development of DDA Access to Premises Standards for a decade. These Standards would mirror proposed changes to the Building Code of Australia, and make it compliant with the DDA. There is broad public support for achieving clarity and certainty in this area. A draft Standard is now before Parliament, and I'm hopeful that it will be passed by the end of the year. If it is, the physical barriers both to and within buildings should - over time- be removed.

Just a few of the stories of those "difficult" advocates who want to get on with their lives. Some successes, some failures, but all showing the impact of exclusion. What causes those much higher unemployment figures, lower participation rates and higher part-time working for people with disability which I set out earlier? What causes the lower socio-economic place of people with disability? The barriers that we, as a community, have erected - in buildings, in transport, in the way services are shaped and delivered, and in attitudes.

[Clip: Australian Story]

PETER FITZSIMONS, FRIEND: Matt ain't a disabled person. He really, fair dinkum, is a man with disabilities. He's a man first, and after it comes these disabilities. And in many ways, these disabilities are the least interesting thing about him. He has intelligence, he has humour, he has drive, he has great integrity, great honesty, great faith.

So what can we, as a community, do to resource the welcoming and participation of everyone. There are two ways to remove the barriers, particularly the attitudinal barrier, currently facing people with disability. The first is to start as children by supporting them to get over this barrier. Finding technology which will minimise the disability, providing solid education in a general school environment where the experience gained is one of mixing with other members of the community, making building and facilities accessible.

[Clip: Australian Story]

MATT LAFFAN: The great thing about living in this city is this, my backyard is the best backyard in all of Australia. When I wander into my backyard, I wander through Hyde Park and I've got the Opera House and the Harbour Bridge not so very far away. And pretty much everything I enjoy doing in the city, it's all available to me and I don't rely on anyone else to get me there. Throughout my life, people have been very good to me. And people say to me, you know, it must be tough being in a wheelchair, and the like. Well, no, it's not, not for me, anyway, because it seems to have opened more doors than its shut. Occasionally there are a couple of stairs to get into the bloody door, but we even seem to get around that. .

Many people with disabilities do this for themselves. Matt certainly loved Sydney and the city, but by having an apartment in the city, and his job in the city, he removed the day-to-day drag of dealing with transport issues. Unfortunately, not all people with disability have the opportunity to do that.

I do the same thing. I use technology, and I organise my possessions and my life in a way where my disability is minimised.

But I encourage you to see the value of making disability an ordinary part of life. Nick Farr-Jones wanted to do that with his kids:

[Clip: Australian Story]

NICK FARR-JONES, FRIEND: I want him to inspire my children, too, importantly; he does. It was very important to me and my wife when we made Matt godfather of our eldest daughter, Jessica, and, you know, I want Jessica and my other three to grow up with a wonderful balance in life, and part of that balance is, that you know, sometimes you meet people in wheelchairs and what have you, but don't be, you know, confounded by it. Support it and learn from it. I don't want them to sort of be confronted by a person who has obviously got, you know, severe physical disabilities and sort of think, golly you know, I've got to get away from this.

I have an eleven-year-old daughter who - as you would expect - has her dad nicely wound round her little finger - that's why you have dads isn't it, to learn the skills of bossing people around. When she was a baby, I used to carry her around in a backpack. One day, at a Sydney railway station, I was minding my own and Rachels business, when a woman came up to me and asked for my name. "Why do you ask," I said, thinking this a strange request. "Because I want to report you to the child welfare authorities. People like you shouldn't be allowed to be responsible for little children." As you might guess, I suggested that she move on or I would report her to the police.

This is an extreme example. But it demonstrates the myths that exist in our community about people with disability, and the assumptions that are made. Most of those assumptions are negative, about things that we can't do, and most of them are wrong. And the assumptions that are not negative paint us as these amazing heroes who are super-human. People with disabilities are not victims, and we're not heroes, we just want to live ordinary lives, and be the agents of our own destiny.

Rene Cassin, a great human rights lawyer and one of the drafters of the Universal Declaration of Human Rights, pointed out during the drafting that

"it would be deceiving the peoples of the world to let them think that a legal provision was all that was required ... when in fact an entire social structure had to be transformed".

In order to achieve that sustainable community which I talked about at the beginning of this lecture, we all need to take on the responsibility of removing barriers, and including people with disability.

The biggest barrier which people with a disability face is the attitudinal barrier. And when that barrier starts to come down, the kids of today (as Peter Fitzsimons and Nick Farr-Jones described) stop thinking about Derek the Deafie, Christine in the wheelchair, or Greg and his white cane. They start thinking about Derek who blitzed the inter-school cross-country championship, Christine who is a legend at spelling, or Greg whose an awesome debater. That's when people with disability will be counted in.

We know where Matt is now. Not because of the strong religious convictions of his family and himself. Not because of the many good works that Matt did while he was here on earth. It's because there's a game they play their, and Matt wouldn't book a seat anywhere else.

So Matt, I've given these guys the good word tonight. And whilst my argument might not be quite as persuasive as yours was when you were "putting away the bad guys" I think it was persuasive enough. So, on your behalf and on our own, we're leaving here tonight with a renewed energy to make our society inclusive of everyone, not just people without disabilities. I know that's what you'd want mate.

Thanks for the chance to speak with you tonight.