Theme Disability Rights Movement

Written by Nikki Henningham, The University of Melbourne

Disability activists suggest that one reason the historical achievements of leading figures in the Australian Disability Rights Movement have not received the attention they deserve is anxiety amongst historians. Owing to the vagaries of accident, illness and old age, historians ignore disability because, as candidates, they have a collective fear of it. Australia's first Disability Discrimination Commissioner, Elizabeth Hastings, alluded to this by using the phrase 'Not Yet Disabled (NYD)' to describe 'mainstream' Australians (Ragg, 42). American historians Doris Fleischer and Frieda Zames note that 'handicapism … is the only "ism" to which all human beings are susceptible' (Fleischer & Zames, xv). Whatever the reason, the political struggle of disability rights activists against 'handicapism' has failed to capture the imagination of Australian historians. This means that an impressive array of women's leadership in advocacy has gone unrecognised.

What little recognition we have seen has traditionally been of the variety that frames life stories as tales of exceptionalism, of individual triumph over adversity. Historiographically, disability has often been regarded 'as a personal tragedy to be overcome, not a cultural construct to be questioned' (Baynton, 41). It has, therefore, been the task of the grassroots politicians and advocates who participated in the Australian Disability Rights Movement (ADRM) to communicate the transformative idea that it is not bodily impairment that disables people but socially constructed physical and attitudinal barriers.

Since the ADRM began in the 1970s, women have taken leadership roles in a variety of contexts. They have directed organisations, run businesses, headed families, assumed political office, played élite sport, published innovative academic research, and advocated for their rights. They have done so in the context of a movement that encompasses a wide range of issues and includes activists with many different political perspectives, across the country and across eras. A sample of the range of women activists in this field includes:

  • Tilly Aston (Green, ADB; Henningham, 'Aston', AWR), who in the late 19th century founded the Victorian Association of Braille Writers and later established the Association for the Advancement of the Blind (now Vision Australia), and was described as 'one of the best known blind persons in the world' (Courier Mail, 3 November 1947).
  • Hazel Bedwin, a disability advocate based in Sydney who lobbied to improve access to parks and other public places for people with disabilities in the 1950s. With the help of her husband, she opened a workshop to provide employment for disabled people.
  • Lesley Hall, who made the news after storming the stage at a Miss Australia quest in the early 1980s,in protest against the fact that women with disabilities were not allowed to enter, despite the fact that they were the recipients of funds raised by the Spastic Society-sponsored quest (Hall Interview).
  • Elizabeth Hastings, appointed Australia's first Disability Discrimination Commissioner in 1993.
  • Margaret Cooper, considered by many in the ADRM to be a founding mother, helped establish the advocacy organisation, Women with Disabilities Australia (WWDA), after leading a rebellion against the men at an international meeting of Disabled People's International in the Bahamas in the early 1980s (Henningham, 'Margaret Cooper').
  • Kelly Vincent (Francis, AWR), who in 2010 became the youngest woman ever elected to an Australian parliament and the first person with a disability elected to the South Australian parliament.
  • Rosemary Kayess, a human rights lawyer, who serves as the external expert on the Australian government delegation to the United Nations negotiations at the Convention on the Rights of Persons with Disabilities.
  • Helen Meekosha, a New South Wales academic whose research has been vital to establishment of Critical Disability Studies as a discipline in Australian universities (UNSW, Staff Profile, 'Meekosha').
  • The collective membership of WWDA, who have promoted the message that disability is not a medical problem but a human rights issue, grounding their advocacy in a rights-based framework that links gender and disability issues to the full range of civil, political, economic, social and cultural rights. WWDA has taken a leading role in creating this framework at an international level, a prime example being its work to ensure that a specific article on Women (Article 6) was included in the United Nations Convention on the Rights of Persons with Disabilities.

All these women have made it their lives' work to improve the situation of people with disabilities by demanding basic rights that the NYD community take for granted, such as access to books, education and public space. What changed with the advent of the ADRM was the rise of a collective approach that demanded that disability, rather than being regarded as an exception to be ignored or overcome, should be understood as 'part of the human condition' (Hastings). A key aim of disability advocates in the late 20th century has been to reframe the discourse around disability as a human rights issue, not a medical one. Women who took a leadership role in the ADRM were determined to highlight and redress problems not only within the realm of the disability rights movement but within the Australian women's movement as well.

Women and the Early Years of the Australian Disability Rights Movement.

A comprehensive account of the rise of the ADRM is yet to be written, although there are some very good accounts of aspects of the movement written by women who were there. Early activists such as Margaret Cooper in Victoria and Joan Hume in New South Wales have described the influence of activism developing in the United States in the 1970s, and the impact of international and home-grown publications on the development of their local activism. They have also stressed the importance of role models in hospitals and hostels in the early 1960s and 1970s, ordinary people who showed them that being shut away in institutions, silently accepting exclusion and discrimination, was not the only option available to people with disabilities. 'By watching others', said Cooper, 'I learned that you didn't have to accept what was dished out'. She also learned that if you wanted change, 'you had to be active' (Cooper, Interview).

As well as the importance of role models, many activists have stressed the centrality of education to the development of their activism. Women like Margaret Cooper, Lesley Hall, Elizabeth Hastings and Natalie Tomas, who had either been born with a disability or had lived with one from a very early age, all had parents who insisted that that their daughters receive a good education. Other women who acquired disability later in life, either by accident or illness, like Keran Howe, Sue Salthouse (Henningham, 'Salthouse', AWR), and Genni Batterham, were tertiary educated (although Batterham did not complete her education). Those who attended university, particularly in the 1970s and 1980s, acknowledge that the experience helped them to begin the process of theorising disability as a social construct. In particular, critical studies of gender and race enabled women like Hall, Cooper and Howe to expose ways the social construction of impairment as 'a tragedy, a hardship or a lack' (Kudlick, 768) led to disability discrimination.

Throughout the late 1970s, small grassroots organisations began to form in the major urban centres around Australia with the aim of providing social support networks for people with disabilities and advocating for their rights, on their own terms. Women were prominent in these mobilisation efforts. Lesley Hall, CEO in 2013 of the Australian Federation of Disability Organisations (AFDO), the peak body for disability organisations in Australia, was instrumental in establishing the state's first Disability Resource Centre (DRC) in Brunswick in 1981. This was a very important development towards what would become a basic priority for the disability rights movement, the principle that there should be 'nothing about us without us'. Set up along the lines of the Independent Living Centres that were being established in the United States, where 'people with disabilities ran their own show', the DRC was not only important as a tool of empowerment and social support; it also provided a model for people with disabilities to adopt as they began to take charge of their own lives. The experience of Melbourne academic Natalie Tomas is instructive. In 1981, Tomas was a history student at Monash University who decided to start a disability action group. The first meeting was held in her flat; subsequent meetings were held in the St Kilda Municipal Library. At the time, she says, she had no idea what she was doing, and had never organised anything in her life. She was 'just a nineteen-year-old student who thought it was a good idea' (Tomas Interview). It was. She met a diverse range of people with disabilities and they talked about the things they could do and change. Social support and affirmation was an important step in the activist's journey.

So was protest action, and women were at the forefront of some significant public protests, especially relating to access to public transport. In 1979, for instance, at the opening of the Eastern Suburbs Railway at Bondi Junction, a state-of-the-art transport hub designed to be rolled out in other locations, a small group of protesters in wheelchairs and their supporters, including Joan Hume and film-maker Genni Batterham, were jostled, spat at, told that they were 'spoiling the view' and that they 'should go home to their nursing homes' (Hume). The behaviour is graphically captured in the internationally acclaimed documentary film, Pins and Needles, about Batterham's coming to grips with her own disability. Premier Neville Wran, who officiated, was deeply embarrassed as he proclaimed the station to be open to many. He acknowledged later, when announcing the establishment of the NSW Wheelchair taxi subsidy program as one of a raft of disability support programs announced in 1981-the International Year of the Disable Person (IYPD)-that his experience at the protest had motivated him.

As a landmark in the history of the ADRM, IYDP was crucial to the successful launch of new programs like the DRC and the NSW Wheelchair taxi program. It was vital for women like Tomas and other grassroots organisers, and it was crucial for communicating new messages on a big stage as well. Early in 1980, three women with disabilities, Elizabeth Hastings, Edith Hall and Rhonda Galbally, met with advertising executive Phillip Adams, who had been awarded the contract to manage the publicity to accompany IYDP in 1981, with the brief to educate the Australian public and help them to 'see ability within disability'. Hastings, Hall and Galbally quickly assessed his proposed campaign, profiling 'supercrips' (Elizabeth Hastings' term for high-achieving people with disabilities) and declared it unsuitable. They insisted that the year had to help people with disabilities to claim the right to speak for themselves-1981 had to be 'the year of disabled people, not the year for them' (Hosking & Adams, 17-18).

Adams was easily convinced and proposed the new assertive slogan, 'Break Down the Barriers', and a campaign that involved him, accompanied by Galbally, Hall or Hastings, travelling the country and taping interviews with hundreds of ordinary people with disabilities. Their stories formed the platform of an advertising campaign that won the 1982 Golden Lion Award at Cannes for the best advertising campaign in the world. It was the first time that advertising had been used as an effective tool to fight for the rights of people with disabilities. By the end of the year, the disabled people of Australia had joined Elizabeth, Edith and Rhonda in speaking out for themselves. One of the most important outcomes of IYPD was its impact on communities of people with disabilities as well as the NYD, of hearing people with disabilities taking control of events and speaking for themselves. Those in the former group were inspired to join the campaign for their rights; those in the latter began the slow process of transforming their understanding of the 'problem' of disability from a medical concern to a social issue.

Not everyone was as quick as Philip Adams to comprehend disability within the framework of human rights. But, after a year of exposure to the advertising campaign, there were many more NYD people starting to make that transformative journey. The leadership role taken by women at this time was crucial in creating the platform from which they would advocate successfully for the structural and legislative changes that followed. It wasn not until 1992 that the Australian government passed the Disability Discrimination Act, but the fact that Elizabeth Hastings was appointed inaugural Disability Discrimination Commissioner was appropriate, given her importance to the structural changes that took place in the intervening period.

'Doubly Disadvantaged': Disability and Feminism Intersect

While the 1980s saw some important changes for people with disabilities in terms of legislation and access to services, there were still some significant blind spots. Many women with disabilities came to understand that they were doubly disadvantaged: that impairment and gender combined to make them more likely to be poorly educated, unemployed, in institutional care and without access to adequate rehabilitation and health services than men with disabilities.

Furthermore, many activists recognised aspects of gendered discrimination that lay, quite literally, in the bodies of women with disabilities. They battled the pervasive and discriminatory notion that they had imperfect, unattractive, asexual bodies and insisted upon their right to enjoy a sex life of their own choosing. Documentary film-maker Genni Batterham documented her life with multiple sclerosis in a series of films over eight years. Sex and sexuality were documentary focal points that 'forced viewers to reassess attitudes about the disabled and challenge historical value judgements about their needs' ('Review', Age, 23 June 1980).

The idea that women with disabilities had bodies that they were entitled to manage in ways that they saw fit was confronting. That some commentators were suggesting that the appropriate response was for the NYD community to adjust their thinking indicates that some people were already doing just that by recognising that, although impairment is real, it is how we respond to it that makes it disabling. In other words, they were beginning to see the plasticity of disability as a social and cultural construction. Helen Meekosha has taken an academic leadership role in supporting this transformation by unpacking the various social and cultural constructions of disability in Australia, and the complex web of meanings and relationships embedded in those constructions in order to underline the centrality of the politics of representation to the disability rights movement and to the women within that movement. She has argued that understandings of disability are fluid and no more fixed in biology than understandings of gender and race, and she points to the historical dimensions of that constructedness, noting that almost from its foundations Australia preferred to lock disabled people away in institutions, preventing the 'pollution' of the wider population with 'defective' genes. In the Australian colonial context, where development of a new society relied on the labour of the strong and the fit, where physical prowess became a measure of manhood while beauty and fitness to bear children were the cultural markers of femininity, the bodies of people with disabilities were regarded as defective and 'valueless' (Meekosha, 2005, 5).

Women with disabilities, however, had been highlighting the relationship between real bodies and the warped meanings attached to them as a central plank of their feminist activism several years before Meekosha started working on an evidence base. Leslie Hall, for instance, became increasingly frustrated by the way traditional, patriarchal, gender hierarchies were played out in disability organisations and the apparent lack of concern for the needs of women with disabilities in the feminist movement. She was a founding member of the Women with Disabilities Feminist Collective (WDFC) that formed in Victoria in response. The WDFC was a social support organisation that also engaged in overt political action. One of its earliest and best-known actions was its opposition to the Miss Australia quest, a beauty contest that raised funds for what was then called the Spastic Society, a charity that raised money on behalf of people with cerebral palsy. Hall and her group challenged the concept of the quest as a particularly objectionable form of fundraiser for people with disabilities, given its focus on physical perfection 'as the norm all must attain if they are to be fully accepted into society' (Hall Interview). While protests had taken place at national finals throughout the late 1970s, IYDP provided the catalyst for sustained opposition to the quest in 1981 and, in some places, beyond. In Sydney in 1983, Joan Hume and her colleagues found it particularly galling that there was not a single person with cerebral palsy in sight during the red-carpet arrival to the event, an event that women with disabilities were not encouraged/permitted to enter themselves. These protests were, arguably, the first public acts to place disability as a feminist issue on the public agenda.

Attitudes towards the bodies of women with disabilities came to drive the activism of many women in the ADRM as they began to understand the extent of the human rights abuses that were committed because of them. The forced sterilisations, child removal and appallingly high rates of physical and sexual violence they experienced were problems that were barely acknowledged, and they remain at the heart of much activism today. On the one hand, women with disabilities were represented as asexual beings who were not expected to form loving relationship, bear children of their own or establish families. On the other, their sexuality was acknowledged and exploited by the hundreds of people who abused them at rates substantially higher than those experienced by women in the community at large.

Women disability activists began talking about these problems in public forums and felt that their voices on these important human rights issues were being ignored by men in the disability rights movement as well as by many women in the feminist movement. Margaret Cooper experienced the hard edge of this ignorance from both quarters in the mid-1980s. The first time came at an international meeting of Disabled Persons International (DPI) in the Bahamas in 1985. It took a threat from all the women delegates to withdraw from the organisation for the men to take them seriously. The second time came at the hands of the feminist movement. In 1985, Cooper returned from the euphoria of the moment in the Bahamas to attend a National Women's Consultative Conference in Canberra. Funding issues saw her at odds with some conference organisers, and many women with disabilities felt, like Indigenous women, migrant and refugee women, that their issues were being ignored by mainstream feminist organisations.

In response to the protest at the Bahamas meeting, a formal Women's Network was established within the DPI. This translated into the formation of a National Women's Network (NWN) within the DPI in Australia in 1985. Margaret Cooper, Natalie Tomas and Elizabeth Hastings were all early members of the Network, and they found that they had much in common with several member of the WDFC, like Lesley Hall, especially with regard to prioritising the problems of domestic violence and access to women's health services. Working as an unfunded network with little support from the male-dominated leadership of DPI(A), these women decided in the mid-1990s that they would be better off going it alone. In 1995, the network incorporated and changed its name to Women With Disabilities Australia (WWDA), a new organisation with the aim of providing a 'national voice for the needs and rights of women with disabilities and a national force to improve the lives and life chances of women with disabilities' (WWDA, 'Background'). WWDA's establishment as the peak organisation for women with disabilities in Australia constituted an important moment in the evolution of women's leadership within the ADRM. The politics of representation was always a central feature of disability activism, and, throughout the 1990s, its feminist edge solidified as women insisted that it was not enough for men to speak out on their behalf. 'Nothing about us without us' was also a gendered mantra.

Over the last two decades, the WWDA has developed from an organisation concerned primarily with building individual confidence and self-esteem to one recognised as promoting international human rights. WWDA leaders continue to reinforce the message that disability is not a medical problem but a human rights issue, so the work of WWDA is grounded in a rights-based framework that links gender and disability issues to the full range of civil, political, economic, social and cultural rights. WWDA has taken a leading role in creating this framework at an international level, a prime example being its work to ensure that a specific article on Women (Article 6) was included in the United Nations Convention on the Rights of Persons with Disabilities, a treaty ratified by Australia in 2008.

Conclusion: Women's Leadership in the ADRM since the 1970s

Margaret Cooper has watched the evolution of the ADRM over forty years. From gaining inspiration from courageous individuals who refused to be patronised and infantalised, to supporting others through conversation and coffee, mobilising direct action, lobbying those in power with the capacity to make changes, working to establish organisations to give people with disabilities a voice-all this while managing work, study, relationship and other family obligations-Cooper has seen people and ideas come and go, but she has never lost sight of what, for her, is a the most important thing a leader of any advocacy organisations must have-a passion for the issues.

Cooper sees 1970s feminist-inspired models of leadership as crucial to the effectiveness of women's leadership in the ADRM. Collectivism is what made (and continues to make) WWDA work. Feminist organisations that she worked in were structured in ways that enabled information to be shared. They were circular in shape rather than hierarchical, with leaders more like spokes in a wheel who facilitated communication than figures sitting on high disseminating information as they saw fit. Of course, this leadership model was time-consuming and very hard work, but, as Margaret indicates, it was 'infinitely more empowering than the old ways' (Cooper, 1995).

Likewise, Sue Salthouse, WWDA president 2009-2012, believes that the effectiveness of WWDA nationally and abroad has come about not because of a focus on individuals but because individuals were, by and large, able to put their egos to one side for the sake of the group. Most women in the movement are reluctant to talk about themselves as leaders, except in the context of how they worked within a group to influence change. Leadership is not regarded as a position so much as a process resulting in change.

This is not to say that, as individuals, women in disability advocacy organisations do not recognise what they bring to the table. They rate themselves highly on their commitment, their strategic visions, their ability to share knowledge effectively and their uses of networks to maximise their efficiency as facilitators. But no one person can posssess all the traits required to be a great leader, so a model of leadership that enables sharing is crucial to success. Leadership is conceptualised within the 'hub and spoke' model of the collective, where knowledge is shared and the leader is the person who facilitates that sharing, within and beyond the organisation. A leader knows when to call in expertise from people at the rim of the wheel when required, and when to suggest someone else be added as an additional spoke. But, according to Sue Salthouse, a leader also knows when to rely on her own good judgment. 'While needing to be inclusive and consultative, prepared and hard-working', she says, 'you can't be self-effacing. A good leader has to have presence' (Salthouse, Interview).

In the context of disability rights politics, a leader must also be physically present, not only because it is vital that the voices of women with disabilities are heard but also because there is enormous symbolic importance attached to women with disabilities being seen to be leaders. They need to be able to demonstrate to themselves and the able-bodied people around them that, in Salthouse's words, 'I look like you, only sitting down' (Salthouse, Interview). It is vital then for women leaders in disability advocacy organisations to be present, so that, as Elizabeth Hastings hoped, we don't need to worry about them 'be[ing] included' because they 'already belong' (Hastings).

Archival Resources

National Film and Sound Archive

  • Pins and Needles, 1980, 289054; National Film and Sound Archive. Details
  • Riding the Gale, 1987, 52114; National Film and Sound Archive. Details
  • Where's the Give and Take?, 1981, 316135; National Film and Sound Archive. Details

National Library of Australia Oral History Collection

  • Keran Howe interviewed by Nikki Henningham, 24 June 2010, ORAL TRC 6240/5; National Library of Australia Oral History Collection. Details
  • Lesley Hall interviewed by Nikki Henningham and Rosemary Francis in the Women with Disabilities Network oral history project [sound recording], 7 June 2010, ORAL TRC 6240/2; National Library of Australia Oral History Collection. Details
  • Margaret Cooper interviewed by Nikki Henningham in the Women with Disabilities Network oral history project, 19 July 2010, ORAL TRC 6240/6; National Library of Australia Oral History Collection. Details
  • Natalie Tomas interviewed by Nikki Henningham and Rosemary Francis in the Women with Disabilities Network oral history project [sound recording], 18 June 2010, ORAL TRC 6240/3; National Library of Australia Oral History Collection. Details
  • Sue Salthouse interviewed by Nikki Henningham in the Women and leadership in a century of Australian democracy oral history project, 20 May 2011, ORAL TRC 6290/5; National Library of Australia Oral History Collection. Details

Published Resources

Books

  • Ewing, Eileen E., Can't I? Just watch me! A Biography of Hazel Bedwin, M.B.E., Landvale Enterprises, South Yarra, Victoria, 1981. Details
  • Fleischer, Doris Zames and Zames, Frieda, The disability rights movement : from charity to confrontation, Temple University Press, Philadelphia, United States of America, 2001. Details
  • Frohmader, Carolyn, There Is No Justice: There's Just Us: The Status of Women with Disabilities in Australia, Women With Disabilities Australia (WWDA), Rosny Park, Tasmania, 2002. Details
  • Galbally, Rhonda, Just Passions: The Personal is Political, Pluto Press, North Melbourne, Victoria, 2004. Details

Book Sections

  • Frohmader, Carolyn and Meekosha, Helen, 'Recognition, Respect and Rights: Women with Disabilities in a Globalised World', in Goodley, Dan; Hughes, Bill; and Davis, Lennard J (eds), Disability and Social Theory: New Developments and Directions, Palgrave Macmillan, Basingstoke, England, 2012, pp. 287 - 307. Details
  • Henningham, Nikki, 'Margaret Cooper: Feminist and Disability Activist', in Davis, Fiona, Musgrove, Nell and Smart, Judith (eds), Founders, Firsts and Feminists: Women Leaders in Twentieth-Century Australia, The University of Melbourne: eScholarship Research Centre, Melbourne, Victoria, 2011, pp. 261-273. http://www.womenaustralia.info/leaders/fff/pdfs/cooper.pdf. Details
  • Meekosha, Helen, 'The Politics of Representation or the Politics of Presence: The Challenge of Disability', in Sawer, Marian and Zappalà, Gianni (eds), Speaking for the People: Representation in Australian Politics, Melbourne University Press, Melbourne, Victoria, 2001. Details

Conference Papers

Journal Articles

  • Baynton, Douglas C, 'Defectives in the Land: Disability and American Immigration Policy, 1882 - 1924', Journal fo American Ethnic History, vol. 24, no. 3, Spring 2005, pp. 31 - 44. Details
  • Cooper, Margaret, 'The Disability Rights Movement Lives', Disability and Society, vol. 14, no. 2, 1999, pp. 217 - 226. Details
  • Hosking, Chris and Adams, Phillip, 'Brave, Sensual, Feisty, Warrior: The Passionate Spirit, The Enquiring Vigorous Minds, and the Steadfast Love - Our Friend and Colleague Elizabeth Hastings - Born 21.1.1949 - Died 13.10.1998', Australian and New Zealand Psychodrama Association (ANZPA) Journal, no. 7, December 1998, pp. 4 - 19. Details
  • Kudlick, Chatherine J, 'Why We Need Another "Other"', America Historical Review, vol. 108, no. 3, June 2001, pp. 763 - 793. Details
  • Sherwin, Jane, 'Leadership for Social Inclusion in the Lives of People with Disabilities', International Journal of Leadership in Public Services, vol. 6, Supplement, September 2010, pp. 84 - 93. Details

Magazine Articles

  • Ragg, Mark, The Quiet Enabler: Elizabeth Hasting, Australia's First Disability Discrimination Commissioner, The Bulletin, 15 March 1994, 42-43 pp. Details

Newspaper Articles

Papers

Reports

Theses

  • Cooper, Margaret, 'The Australian Disability Rights Movement: Freeing the Power of Advocacy', MA thesis, The University of Melbourne, 1999. Details

Online Resources

Digital Resources

Title
Lesley Hall interviewed by Nikki Henningham and Rosemary Francis in the Women with Disabilities Network oral history project [sound recording]
Type
Audio
Date
7 June 2010
Place
National Library of Australia
Control
4928703
Repository
National Library of Australia Oral History Collection

Details

Title
Natalie Tomas interviewed by Nikki Henningham and Rosemary Francis in the Women with Disabilities Network oral history project [sound recording]
Type
Audio
Date
18 June 2010
Place
National Library of Australia
Control
4928685
Repository
National Library of Australia Oral History Collection

Details