LinkUp #146 – August 2011 ISSN 0810-5308 The newsletter of People with Disability Australia Incorporated. Contents Contributors President People with Disability Australia: Where it all began and the birth of the disability rights movement in Australia Movers and Shakers of the 1980s in the Handicapped Persons Alliance and Disabled Peoples International (NSW) PWD: Past, present and future Where did PWD come from? (Or how to spend thirty years!) Congratulations! Vale Robert Farley Founding members Presidents Life members Part of PWD for 30 years... Congrats! 24 hours in my shoes A Carer’s perspective of PWD PWD Timeline Queensland representative PWD looks to youth for the future LinkUp also available as Braille, Audio, Large Print Contact Us Contributors Dean Barton-Smith, Peter Cassar, Daphnée Cook, Jan Daisley, Faye Druett OAM, Heidi Forrest, Joan Hume OAM, Graeme Innes AM, Phillip A Pluck, Willie Prince and Christine Walton. President Jan Daisley, PWD President Firstly I would like to dedicate this edition of LinkUp to the memory of Mr Robert Farley. Robert was President of PWD from 2006 until 2010 having served on the Board from 2004. His passing on 28 August 2011 has come as a big shock to us all and our thoughts are with his family at this time. This edition is written post our 30th Anniversary member’s event which was a significant milestone for PWD. It was nice to see old members and new members mingling together. Although I was around 30 years ago, I was not an official member, so it was great to hear from people who were founding members. I would like to thank our keynote speakers, Senator the Hon. Jan McLucas, Parliamentary Secretary for Disabilities and Carers; the Australian Disability Discrimination Commissioner and Race Discrimination Commissioner, Mr Graeme Innes AM; Prof. Ron McCallum AO, Chair of the UN Committee on the Rights of Persons with Disabilities and Senior Australian of the Year 2011. Likewise, to our Founding Member and Life Member Joan Hume, who gave us an account of our beginnings. Thank you all. A big thank you goes to our MC Joe Mannix OAM, PWD’s Treasurer and all staff members who worked so very hard to pull everything together and make it all go smoothly. For me, the highlight of the evening was the cutting of the cake which Jan, Graeme, Joan, Ron and I had the honour of doing. I also thank our sponsors Gilbert + Tobin, DLA Piper, Media Access Australia and Crumbs Cake Art. I was also highly honoured to present three Anniversary Life Memberships firstly to our ex-president Robert Farley. The second worthy recipient was Therese Sands, who has been with PWD for 10 years and who is a very dedicated employee. The third was to Damian Griffis, an ex-PWD employee and the current Executive Officer of the First Peoples Disability Network Australia and the Aboriginal Disability Network (NSW). Congratulations to all three new Life Members. I would like to say how proud I am to be President of our great organisation at this memorable time of 30 years celebration. We have come a long way in the last 30 years. I am sure we will reach even greater heights in the next 30 years. I am grateful to all our members. After all, we are here for you to advocate on behalf of our members to make your lives a better quality with all the human rights available. Jan Daisley, President, PWDA People with Disability Australia: Where it all began and the birth of the disability rights movement in Australia Joan Hume OAM Life Member Do you remember a time: ...When the only form of public transport for people with severe disabilities was the ambulance? ...When most children with disabilities were educated (if at all) away from their families, local communities and friends in segregated, isolated schools and sometimes even in hospitals? ...When deaf children had their hands tied to stop them signing to each other and to force them to learn to communicate orally? ...When married women with disabilities were forbidden access to rehabilitation from the Commonwealth Rehabilitation Service as it was assumed that they didn’t need to work? Their husbands would look after and financially support them. Forever. ...When selling pens at the railway station or shoving unspeakable objects into cardboard boxes in a sheltered workshop for a couple of dollars a week was seen as a smart career move? ...When being pushed in a wheelbarrow was the only way a child with polio from a poor rural background could get around? ...When a beauty queen with a perfect face, perfect speech and a perfect body was chosen every year to represent, raise funds for and speak on behalf of all people with cerebral palsy across Australia? Did you ever see any woman with cerebral palsy chosen to symbolise her organisation except in a pitiful photo on the charity boxes in milk bars? ...When you turned up at your local cinema/restaurant/church/footy match in a wheelchair or with your guide dog only to be forbidden entry because you were a fire hazard or the sight of you was offensive to other patrons or turned them off their food or there were too many steps or dogs were banned because they were too noisy or believed to be a health risk. Only to be lectured ad nauseum: we don’t need to provide access because nobody with a disability ever comes here anyway. Right? Not too long ago. I haven’t even touched on some of the more complex bioethical issues around enforced sterilisation of disabled girls, late term abortions for disabilities such as Down syndrome or short stature, deliberate “medical” killings of newborns or euthanasia on the grounds of disability alone. All of these examples from the lives of people with disabilities have occurred within the last 50 years, some within the previous 30, some even continue today. Revolting isn’t it? Enough to start a rebellion. The disability rights movement in Australia was born from the passion, the anguish, the outrage, the despair and the explosion of frustration caused by centuries of exclusion, humiliation, prejudice, poverty, disempowerment, pity, condescension, charity, segregation, oppression and neglect. It was a movement whose time had come. And its stirrings were world-wide. The United Nations had inaugurated the Declaration on the Rights of Disabled Persons in 1975. But we were also stimulated and inspired by the other great 20th century political, social justice and liberation movements which preceded ours: unionism and workers’ rights, black civil and gay equal rights, feminism amongst many others. We were fed up with professionals of whatever persuasion who, of course, always knew better, who bullied us, spoke for us, told us what we needed and how to do things. We were denied the strength of our own voice and the powerful truths of our lived, embodied experiences of disability. We wanted things to change. People with Disability Australia began humbly as the Union of Handicapped People in 1980. A meeting held in May of that year at the Queen Elizabeth 11 Rehabilitation Centre and chaired by the late Ben Meads, called for the establishment of an organisation that crossed disability lines and united all people with all disabilities, regardless of their medical diagnosis, level of intellectual development or psychiatric condition. It was the first of its kind in New South Wales and it was beginning to happen right across Australia. Although the catalyst was the forthcoming International Year of Disabled Persons, scheduled for the following year, the smell of insurrection had been in the air for a least a decade. Most of the existing disability organisations had focused on a particular medical condition or a charitable approach to disability. All were competing for the public and private dollar mainly to provide specific services. All very laudable. Many of them still do this and very well. But very few, with the possible exception of the Australian Quadriplegic Association (now Spinal Cord Injuries Australia), were into advocacy, social change and political activism spearheaded by and for people with disabilities. So the birth of a new organisation with a radically different perspective of the status and capabilities of all people with disabilities advocating together for political change, was electrifying. And exhilarating. A wonderful adventure of which I was privileged to be a part. But no sooner had the new voice of dissent and challenge to the status quo begun to assert itself when there was a offended squawk from an unexpected source: “You’ve stolen our name”, cries Barrie Unsworth, the then Secretary of the NSW Labor Council and later the NSW Premier. He claimed, whether from guilt or ignorance, that we’d usurped the name of “union” and it had to go or he’d sue. We changed our name to the Handicapped Persons Alliance. The fruits of the International Year of Disabled Persons (IYDP) were bountiful, both here in Australia and globally. It witnessed the birth of Disabled Peoples International at its first World Congress in Singapore in December 1981. The NSW IYDP Secretariat funded the Disabled Persons Resource Centre, The Handicapped Persons Alliance and the formation of regional councils based on the IYDP Committees centred in major rural and regional centres. These disparate groups all merged under the umbrella of Disabled Peoples International (NSW) in 1984. In its first decade, collectively the disability rights movement achieved: Firstly and critically, was the united, proud and increasingly insistent voice of people with disabilities. Secondly, were our growing skills in self-advocacy, lobbying, organisational management and informed, articulate debate. We raised issues or complained loudly in letters to newspapers, politicians or anywhere else that was relevant. This led to invitations of our members to participate on government advisory bodies and play a more decisive role in our local communities and non-government organisations. Thirdly, we took to the streets: we demonstrated noisily with placards and megaphones. The first demonstration I ever attended in a wheelchair was the protest at the opening of the inaccessible Eastern Suburbs Railway in 1979. Genni Batterham inspired it but the AQA organised the wheelchair brigade of placard wavers. We were abused, jostled and screamed at: “Go back to your nursing homes, you’re spoiling the view.” An embarrassed Premier Neville Wran promised action and two years later he introduced wheelchair accessible taxis and the Taxi Transport Subsidy Scheme. This scheme gradually spread to other states. So direct action can bring results. We also achieved: * The introduction of national aids and appliances scheme, now administered by individual states; * The Attendant Care Scheme whereby people with disabilities control their own personal care support; * Amendments to states’ various anti-discrimination laws to include disability as grounds for complaint, culminating in the Commonwealth Disability Discrimination Act 1992; * Improvements in access to public buildings, public spaces and transport, including air travel; * Expansion of the Home and Community Care Programme to include younger people with disabilities; and * Better equality of access to education especially in the post school and higher education sectors. These are but some of our earlier triumphs. But there is so much more to be done. We are still striving for a more just and equal society. We still struggle against stigma and exclusion and poorer services in all aspects of our lives: whether it be in trying to get a job or merely wanting to sit next to our partner at the Opera House concert hall. But we are much stronger now, we are not invisible anymore and we now have avenues of complaint and redress which weren’t available a generation ago. People with Disability Australia stand up and take a bow. Movers and Shakers of the 1980s in the Handicapped Persons Alliance and Disabled Peoples International (NSW) Ben Meads, Graeme Innes, Robert Wood, Brian Newtown, Kevin and Patricia Byrne, John Roarty, Les Hume, Jenny Stanzel, Ross Soutar, David Brice, Ian Irwin, Franz Weber, Brian McLeod, Marilla North (Eidlitz), Rosina Grosse, Ian Cooper, Jacob Baldwin, Noel Hiffernan, Wayne Best, Ron White, George Peterson, Laurie Alsop, Hazel Freed, John Ahern, Alisa Coleman, Pat Quin-Boas, Neil Sleep, Fiona Strahan, Kali Wild, Joe Harrison, John Moxon, Margaret Tucker, Terry Fletcher, Joe Mannix, Faye Druett, Heidi Forrest, Marushka Hanak, Wendy Potter, Joan Timperley, Bronwyn Moye and Jan Daisley. PWD: Past, present and future Graeme Innes AM Disability Discrimination Commissioner and Race Discrimination Commissioner I acknowledge all of my sisters and brothers with disability and those of you who have been fellow-travellers in the cause of advocating the rights of people with disability in the past, present and future. I want to take you back in time to 1981. When the hit movies were Raiders of the Lost Ark, On Golden Pond, Arthur and For Your Eyes Only. When hit songs included Kim Carnes’ Bette Davis Eyes, Phil Collins’ In the Air Tonight, Olivia Newton John’s Physical and Celebration by Kool and the Gang. Salman Rushdie wrote Midnight’s Children, and Peter Carey wrote Bliss. Trevor Chappell bowled that famous under-arm delivery in a one-day game against New Zealand at the MCG and South Melbourne AFL club moved to Sydney to become the Sydney Swans. It was the International Year of People with Disability and PWD was born. Now that the scene is set, let me take you to a garage underneath a block of units in suburban Ashfield in the early 1980s. It’s stacked to the roof and for all of its length, with 240 cardboard boxes, each containing a dozen bottles of wine. We’re talking grass-roots community organisation fund-raising; $5 from each bottle goes into the bank account of this new organisation, whose members are full of passion and energy for equal rights in society. Two men with such passion and energy had unloaded the boxes from a truck the day before. Now a guy in a station wagon has his car backed up to the garage and a very tall man and a fit young bloke are loading boxes into it so that the deliveries can start. It was volunteer community action at its best, with the Aussie flavour of a drink for someone at the end of the process and money to a good cause. Quite a typical scene, you might say. There was only one key difference; the two guys who unloaded the truck both had intellectual disability, the guy driving the station wagon used a wheelchair, the tall man had epilepsy and the fit young bloke couldn’t see. Just in case any of you haven’t guessed, we were all members of what was then the Handicapped Persons Alliance, what is now PWD Australia and it was my garage. Lucky I couldn’t drive or there wouldn’t have been enough room to stack the wine. In thirty years that fit young bloke has lost his beard, put on a bit of weight (not too much) and his hair colour has changed. But, to go back to that 1981 movie Raiders of the Lost Ark, as Indiana said to Marion when she told him he was not the man she knew ten years ago, “it’s not the years, honey, it’s the mileage.” In the same thirty years, PWD has grown from a small organisation of people with disability, passionate and energised by their commitment to equality and full participation in society for people with disability, to an organisation of equally passionate and energised volunteers, backed by an excellent team of paid staff who share that passion and energy. The basic challenges and issues haven’t changed - equality, rights, full participation and equal standing in society. We still don’t aspire to anything more than equal acceptance in Australian society; as someone put it in a memorable speech title some years ago: a flat, a mortgage and a Holden car. Bill Shorten described it several years ago as the last frontier of practical civil rights. The particular questions change, although many of us here tonight might suggest that underneath they are still the same. Where do we live? In institutions, group homes, with support in the community, or in “congregate facilities”. Where do we work? In sheltered workshops, factory settings, disability enterprises, for most of us not in the labour market at all or for the lucky ones in a regular job in the community. Where do we learn? In segregated schools, in inclusive education or at regular schools but in a “special” class. The challenges for us to achieve equality and full inclusion are still out there. Report after report, the Shut Out report being just one example, show the disadvantage experienced in our society by Australians with disability. Our media and many of our politicians, spend their time castigating those attempting to take positive action to address climate change and vilifying the hundreds, who due to terrible persecution in their own countries, seek asylum in ours. But what do we hear about disability issues, and people with disability. We are represented as either heroes or victims, when we want to be seen as people enjoying equal and included lives in the broader community and as agents of our own destiny. For such an environment we need strong, committed and long-term advocacy. So, to use a well-known line from television, PWD, ‘thank god you’re here’. PWD’s record stands it out as one of, if not the, premier peak advocacy body in this country. It has been notable for its unshakable philosophy, its demonstrable commitment to and its strategic approach on a broad range of issues in the disability field. Just to mention one, its leadership on gaining support in Australia for ratification of the Convention on the Rights of Persons with Disabilities was outstanding. As my colleague and friend Professor McCallum says the Convention will be the foundation stone for achieving equality and inclusion for people with disability not just in Australia but around the world. This year recognises thirty years of achievement by PWD since 1981. Whilst I’ve talked about the fact that there is still much to do, it’s important to celebrate the progress so far achieved: * state and federal disability discrimination legislation * state and federal disability services legislation * much improved access to public transport - remember that demonstration outside the Eastern Suburbs railway when it was totally inaccessible * improved access to buildings and the premises standard which will take us much further; * and of course the Convention, just to mention a few. Some of us might suggest that we recognise such achievement with a glass of a slightly more current vintage than that stored in that Ashfield garage around that time. I’m sure all of us would be happy to use the words, and sentiments, of Kool and the Gang from their 1981 song: “There’s a party goin’ on right here, a celebration to last throughout the years. So bring your good times, and your laughter too, we’re gonna celebrate your party with you. Come on now, celebration.” Where did PWD come from? (Or how to spend thirty years!) Faye Druett OAM It’s another Saturday afternoon, in or around 1980 and I head off to another meeting. There is a small, dedicated group of people who meet to talk and talk and then make decisions and then talk about them again. This constant talking and reviewing is to ensure decisions include all of us and also those who aren’t at the meeting. Who maybe never will be able to join in themselves. It is a fundamental principle! The group is growing. Where we come from amazes me. How do people find out about the group? People keep coming and we grow. Some of us are: * people from workshops who say they want a better quality of work to do and greater pay for their work; * people from ‘institutions’ who say they want to live in a home in the community like other people do; * people who arrive at the meeting in a vehicle from a ‘charity’. They say they’d rather come to the meeting by bus, train or taxi like other people do; * people who talk about having a better quality of mental health services, where they have some say over where and how they live and what medication they take; * people who use their hands to talk and listen. They say they want their language and culture recognised as just that, a language and culture. There are many other people with disability and issues whose issues we also talk about. The first issue we talk about is doing things for ourselves because we are people with a range of disability. We talk about setting up an organisation that will be comprised of people with disability ONLY. We want it to be a unique organisation of and for people with disability. Back then, through the work of a number of people with disability People with Disabilities NSW was established as a means of ensuring our place in our community. Thirty years later, it continues to be run by people with disability with and for people with disability. What an organisation People with Disability Australia is! Some of the issues are different and some of the people are different now and the work goes on. PWD has been instrumental in achieving results in many issues and working on new issues as they arise. It has been an interesting and busy thirty years for me. If you want to work hard with committed people, who are working towards ensuring the rights of and inclusion of all people with disability in an equitable community come and join us. I wouldn’t have done anything else in the last thirty years but work, in various capacities, for People with Disability Australia. If you aren’t a Member then come and join us in our work, meet many interesting people and have a bit of fun on the way. That is why I have been around PWD. Congratulations! Dean Barton-Smith Chair, AFDO The Australian Federation of Disability Organisations (AFDO) congratulates PWDA on 30 years of promoting the rights of people with disabilities. PWD has grown from a state based organisation to one that now operates at the national level. As sister organisations AFDO and PWDA have developed a close working relationship particularly in regards to the development, implementation and ongoing monitoring of the United Nations Convention on the Rights of Persons with Disabilities. This relationship has been strengthened over the last 12 months with a Memorandum of Understanding between our two organisations. We continue to work together on developing Australia’s shadow report and on domestic and international issues. In the last year alone we have collaborated on many issues and events including research, individualised funding and income security. The solidarity that exists between our two organisations can only strengthen the advancement of human rights for people with disabilities around the world. It is important that we work together and not allow conservative forces to try to divide and conquer us. Congratulations once again to the PWDA Board, Management Team and all staff and members. We look forward to working with you in the years ahead. Vale Robert Farley The Board and staff of PWD were deeply saddened by the news of the death of Robert Farley on 28 August 2011. Robert served as President of PWD from 2006 to 2010, during the period when Australia signed and then ratified the UN Convention on the Rights of Persons with Disabilities. He made a significant contribution to the rights of people with disability, not only through the positions he held at PWD, but also with the Disability Council of NSW. He provided advice to NSW Ministers for Disability Services through his tenure as Official Community Visitor and was very involved in the disability community of the Newcastle and Hunter region serving on the Board of Disability Services – Port Stephens Inc. PWD owes a debt of gratitude to Robert’s determination to promote the human rights of people with disability. The achievements he made in the disability services and human rights sectors will not be forgotten. Robert was a lifelong participant in the arts, publishing short stories and having his plays performed on stage. He won literary awards and enjoyed painting. Those of us who had the privilege of knowing Robert will miss him greatly and our thoughts are with his family. Founding members IYDP Secretariat – 1981 Brian Newton, Ross Sutton, Brian McLeod, Jacob Baldwin, Noel Heffernan, Bill Langshaw (NSW Director of YaCS), Affie Zagoridis, Graeme Innes, Hazel Freed DPI (NSW) Board – 1987 Ron White, Marietta van der Meer, Alicia Coleman, Joan Hume, George Peterson, John Roarty, Robert Wood People with Disabilities (NSW) – 1991 Laurie Alsop (President) Presidents Handicapped Persons Alliance 1981-82 Ross Soutar 1982-83 Rosina Grosse 1983-84 Robert Wood Disabled Peoples International NSW 1984-85 George Peterson 1985-87 Ron White 1987-89 Joan Hume 1989-90 John Ahearn People with Disabilities NSW 1990-94 Laurie Alsop 1994-98 Ian Cooper 1998-02 Wendy Potter People with Disability Australia 2002-06 Heidi Forrest 2006-10 Robert Farley 2010- Jan Daisley Life members Laurie Alsop, Lester Bostock, Nola Buck, Janette Cameron-Smith, Peter Cassar, Jan Daisley, Faye Druett, Robert Farley, Heidi Forrest, Hazel Freed, Phillip French, Damian Griffis, Julia Haraksin, Micheal Herdman, Joan Hume, Graeme Innes AM, Ian Irwin, Joe Mannix, Annie Parkinson, Wendy Potter, Therese Sands, Alan B Sargeant, Jenny Stanzel and Lai Ha Wu. Part of PWD for 30 years... Heidi Forrest PWD Life Member My introduction to PWDA was as a voluntary worker at the Disabled Persons Resource Centre (DPRC) which was managed by the (then) Handicapped Persons Alliance. I was a teenager with an acquired disability from regional NSW. After I completed my HSC, I was sent to Sydney for rehabilitation because I refused to follow traditional avenues for work at a sheltered workshop. I had no foreseeable career choices or opportunities for further education. Working at the Resource Centre gave me the self-confidence and skills to become employable. It also provided me with the opportunity to get actively involved in the development of a social movement for people with disability. PWDA was and always has been driven by its membership. I loved the idea of using my lived experiences to help make a difference. It was an important aspect of the movement and extremely empowering to me. My involvement in PWDA enabled me to be involved in the development of important initiatives like the introduction of the taxi subsidy scheme and the HACC program as well as in campaigns such as rallies on deinstitutionalisation and for post-school options. I didn’t realise at the time that by advocating for specific reforms in certain areas, I was actively involved in groundbreaking victories and achievements. However, while we have made gains in some areas, there is still a need for significant action in others. This is highlighted by recent events including the abuse and neglect of people with disability in boarding houses and unacceptable policies and practices for many children and adults with disability in the education system. PWDA enabled me to develop individual skills while simultaneously enabling me to be part of the ground swell of wider systemic rights at an individual, national and international level. I dedicate this article to the memory of Robert Farley. Congrats! Dear Therese and PWD staff and members, I am disappointed I can’t be with you tonight. I wish you a wonderful evening. Congratulations on 30 years of advocacy and support to people with disabilities. 30 year milestone is a testament to your effectiveness and tenacity. Ideally, in a perfect world, our organisations would not need to exist. However, what you have and are achieving in promoting human rights and an inclusive society are certainly reasons to celebrate. On behalf of ADDC members and from a personal perspective, I congratulate you all at PWD and take immense pride in being associated with you. Have a great night. Warmest regards, Christine Walton Australian Disability and Development Consortium (ADDC) 24 hours in my shoes Peter Cassar Board Member, Secretary and Life Member I would like to relay my feelings on the day of PWDA’s AGM which took place on 28 November 2009. That day remains very firmly fixed in my memory. My day commenced in the usual fashion. I attended to my various chores before I went to the Mercure Hotel. As always, I arrived a little early so I spent that time catching up with people I had not seen for some time. The AGM meeting started and all was going well. To my surprise and pleasure I was awarded a Life Membership. I wanted to say how I felt but only had time to say thank you. For the remainder of the evening I was on a high as this award made me feel my life was useful in assisting other people in my role as an advocate. When I was attending university, the subject of advocacy was my passion. So being awarded a Life Membership with a peak advocacy organisation made me feel 10ft tall and mighty proud. I am dedicated to empowering people with disability and helping them to understand and obtain their human rights. Many people do not have the ability or knowledge to self advocate, particularly people with intellectual disability living in institutions who fall victim to various forms of abuse endemic within such settings. As a person who was institutionalised for a period of time and who also worked in institutions for many years, I personally experienced and witnessed many forms of abuse. I was institutionalised because I was unwell. In the institution I was vulnerable to others and I was abused. It was horrible and I have never forgotten that and most likely never will. I also cannot forget seeing people with disability being abused during the time I spent working in various institutions. These are the reasons why I strongly advocate for deinstitutionalisation of people with disability or devolution (the closure of all institutions for people with disability). PWDA staunchly advocates for devolution and many more disability rights issues state wide, nationally and internationally. These are my main reasons for becoming involved with them. PWDA began advocating for the rights of people with disability in 1981 which was the International Year of Disabled Persons (IYDP). This year PWDA celebrated their 30th Anniversary. They have much to celebrate. They have achieved a great deal over the previous three decades, much too much to list here, so please feel free to visit PWDA’s web site www.pwd.org.au to find out more. I am very proud of PWDA and their achievements over the last 30 years; I am also very proud and thankful to PWDA for giving me the opportunity to participate as a Director on their Board and I am most honoured to be a life member of an organisation that staunchly advocates for disability rights. I would like to take this opportunity to personally thank all presidents, board directors, chief executives, staff, volunteers and most importantly the members of PWDA past and present for all your hard advocacy work, achievements and support over the last 30 years. Once again, I thank PWDA for everything you’ve done thus far and wish each and everyone of you at PWDA a very happy 30th anniversary and wish you all the very best for the next 30 years and beyond. A Carer’s perspective of PWD Phillip A Pluck Member First of all, I would like to congratulate PWD on reaching 30 years and I am proud to have been involved as an associate member since the very beginning. I joined when the organisation was called Disabled Peoples International (DPI), the President was Ian Cooper and the organisation was based in Rosebery. The reason I joined PWD was to learn more about disability. I had recently become a carer for both my wife and daughter, who had been diagnosed with Multiple Sclerosis and I wanted to learn more about this mysterious condition. In those early years (and in fact, probably still now for many people!) it seemed overwhelming and difficult to cope with. I joined a lot of associations at this point, including the Paraquad Association of NSW, the MS Society and the CARERS Taskforce Inc. (now disbanded). At first, when I joined PWD, I knew of only one kind of disability, namely MS, but by attending meetings, workshops and forums organised by PWD looking at disability, I gained a broader and clearer understanding of the everyday experience of people who live with a disability. There were a number of momentous PWD events which, through my involvement with the organisation, further enriched my knowledge of disability. Workshops on the development of the NSW Disability Services Act in 1986 and workshops on the development of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) were definite highlights. In both of these workshops, members were invited to contribute their first hand input. Of special interest for me was a forum organised by PWD at Redfern Town Hall, which discussed what a hypothetical society made up of 85% people with disability and 15% people without disability would look like. The presentations made by several PWD members were smart, intelligent, well-structured and, at times, very humorous. Most importantly, the forum convinced me how much easier it would be for people with disability to achieve their aspirations if society was more accommodating to their needs. In this hypothetical society, the 85% would win the day! The purpose of my LinkUp article is threefold. First, it is an attempt to ask why life can be so unfair to some in their endeavour to survive in a presently difficult society. Secondly, to articulate the effect my association with PWD has helped me to manage my caring role. Thirdly, to salute the past and present PWD members, Boards and staff for their achievements over the last 30 years. I call upon carers in general to join and support an organisation which takes such a unique approach to the caring situation. Never give up – and thank you! PWD Timeline 1981 International Year of Disabled Persons: An International Year of Disabled Persons Secretariat was set up by the NSW Government’s Department of Youth and Community Services in 1980 to organise and fund IYDP activities in 1980. Secretariat funded First Handicapped Persons Conference 1982 First Handicapped Persons Conference Creation of Handicapped Persons Union based on model of a trade union; ethos of self-help and independence. Change of name to Handicapped Persons Alliance, supported by NSW Govt funds transferred from IYDP Secretariat. Merged with existing Consumer Information for the Disabled - this information/referral function continued as Disabled People’s Resource Centre (DPRC). NSW branch of newly-formed Disabled Peoples International (DPI) established. 1984 Handicapped Persons Alliance and NSW branch of Disabled Peoples International merged, forming Disabled Peoples International (NSW Branch) 1990 DPI (NSW) received funding from NSW government to run the Disability Complaints Service. 1991 Another change of name to People with Disabilities (NSW) to reflect dissatisfaction with the term ‘disabled people’, in favour of a name that put ‘person first, disability second’. 1993 Moved to 52 Pitt Street, Redfern from Rosebery 1994 DPI World Congress 2001 PWD (NSW) was awarded the contracts to deliver the National Disability and Abuse Hotline service and the Complaints Resolution and Referral Service (CRRS) 2002 The membership of PWD (NSW) approved the move to become a national disability rights and advocacy organisation and People with Disability Australia was born. The first Pacific Disability Forum (PDF) was convened in Fiji, sponsored by NZAid and PWD. The Women with Disabilities Pasifika Network was also organised by PWD. 2003-06 PWD attended the Second Session of the Ad Hoc Committee for the development of an international convention on the rights and dignity of people with disability. 2004 PWD was awarded the contract by the Australian Government to conduct national consultations around content of the International Convention. 2005 PWD, through its reputation for working actively and effectively in international forums, particularly in the Asia-Pacific region, was awarded ‘special consultative status’ with the United Nations. 2006 PWD was present at the United Nations in New York when delegates to the Eighth Session of the Ad Hoc Committee agreed to the text for the International Convention on the rights and dignity of persons with disability. PWD played a key role throughout in consulting and negotiating with Australian and international governments, NGOs and DPOs. 2007 PWD participated in and delivered a presentation at the 7th World Assembly of Disabled People’s International, held in Seoul, Korea. 2008 PWD, as part of the Australian Leadership Awards Fellowship (ALAF) program, hosted 21 people from fellow disabled people’s organisations from the Asia-Pacific region. PWD coordinated a sustained effort with other disability organisations, calling for the Australian Government to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This ratification was achieved. PWD’s Board appointed three Executive Directors into its Leadership Team, moving away from a single CEO model of leadership 2009 PWD was awarded seven tenders from the Commonwealth Government to enable us to expand our Individual Advocacy Service. From this funding PWD was able to establish offices in the NSW local government areas of Sutherland Shire, Queanbeyan City Council, Goulburn-Mulwaree Council area and Wingecarribbee Shire. In Queensland for the Bundaberg Regional Council, Fraser Coast Regional Council, Sunshine Coast Regional Council and Logan City Council areas. PWD became a signatory to the Australian Council for International Development (ACFID) Code of Conduct, ensuring that PWD is accountable and transparent in its capacity building work with people with disability in the Pacific region. PWD took a lead role in establishing the NGO CRPD Shadow Report Project Group and worked collaboratively with project partners to conduct national consultations with disability representative, advocacy and legal organisations on the situation of people with disability in Australia – this project is critical to monitoring and reporting to the United Nations on CRPD implementation in Australia. 2010 PWD signs Memorandum of Understanding (MOU) with the Australian Federation of Disability Organisations (AFDO) which sets out principles and practice for the collaborative partnership between our two organisations. PWD was awarded the tender from the Commonwealth Government to enable us to open an additional Individual Advocacy Services in QLD. Our Mt Isa office provides individual advocacy support in the Boulia Shire Council, Carpentaria Shire Council and Cloncurry Shire, Mt Isa City Council, Burke Shire Council. 2011 PWD signs MOU with People with Disabilities WA which sets out principles and practice for the collaborative partnership between our two organisations. The MOU gives formal recognition of this partnership by providing reciprocal membership. Queensland representative Hi my name is Willie Prince and I’m one of the Queensland representatives on the Board of PWDA. This is my second term on the Board. I first became aware of PWDA when Heidi Forrest, the then President and some other Board members came to a conference in Brisbane and we got to talk about the work of PWDA. This evoked my interest to know more and the rest is history. Given what is happening within the disability sector to people who are marginalised and discriminated against and the push by some governments to re-establish mini institutions back into the community, despite the commitments by the government of the day to close them, PWD is more important than ever. I know that being a member of such an organisation as PWDA is the most effective way to voice your concerns and be there to support those in need. Before being involved with PWDA I was already involved with advocacy organisations in Queensland. I guess that this gave me a little bit of an understanding of some of the issues and the work PWD undertakes. From the humble beginnings of PWDA we now have Queensland offices in Mt Isa, Logan city, Sunshine Coast, Fraser Coast and Bundaberg. This shows the commitment and the vision of PWDA and its willingness to reach out into these communities to be the voice of people with disabilities. It is now time that we all stand united as one, to be that voice that can be heard in the halls of government. PWD looks to youth for the future Daphnée Cook, Communications and Membership Development Manager Are you between 18 and 30 and have a disability? Do you know someone who is? PWD wants to strengthen our cohort of younger members with disability, who will bring fresh perspectives on what it’s like to be a young person with disability in Australia today. As a growing organisation, we want to make sure our membership is representative of all people with disability – including those new to the disability rights movement! PWD understands that young people bring new energy, creativity, enthusiasm and a passion for change to organisation, which is what PWD needs to make us effective and adaptable into the future. For PWD to continue to be the leader in disability rights, we need to start engaging with youth-led organistions, and increase the voice of younger people with disability into our campaigns and strategies. After all, our young people today are the leaders of tomorrow and we need to start engaging with these leaders now, when they have the spirit and energy to bring new ideas to the organisation. To kick off our engagement with potential new young members of PWD, you may have noticed that we have become very active on our social media platforms (Facebook and Twitter). This has brought about a wonderful response from young people who would never have heard of PWD had we not had this online presence. This is just the beginning - in order to reach out to younger members, we need your help. Word of mouth is one of the most effective ways to promote membership and support for PWD. You may have a family member, or a friend, who would make an excellent PWD member, but have never joined the organisation because they’ve never been asked. So after reading this edition of LinkUp, I encourage you to speak to the young people with disability in your community, your family and friends about PWD and why you are proud to be a member of the organisation. Like to know more? Contact Daphnée at daphneec@pwd.org.au or call (02) 9370 3100 or visit our website at www.pwd.org.au LinkUp also available as Braille, Audio, Large Print If you would prefer to receive LinkUp in one of these alternative formats, contact PWD on one of the numbers below. Contact Us LinkUp is the newsletter of People with Disability Australia Incorporated. We welcome contributions from members. Editorial responsibility for this edition lies with the Leadership Team. © 2011 People with Disability Australia Incorporated Copyright of cartoons or photographs remains with the supplier unless otherwise indicated. If you would like to receive LinkUp in an alternative format or have an enquiry please contact PWD. Postal Address PO Box 666 Strawberry Hills NSW 2012 Street Address Ground Floor, 52 Pitt Street Redfern NSW 2016 Phone 02 9319 6622 Toll Free 1800 422 015 Fax 02 9318 1372 TTY 02 9318 2138 TTY Toll Free 1800 422 016 Email pwd@pwd.org.au Website www.pwd.org.au FaceBook http://www.facebook.com/PWD.Australia Twitter http://twitter.com/pwdaustralia