Issue 11, Autumn 1996
Women With Disabilities Australia (WWDA) is the peak organisation for women with all types of disabilities in Australia. It is a not-for-profit organisation constituted and driven by women with disabilities. It is the only organisation of its kind in Australia and one of only a very small number internationally. WWDA is inclusive and does not discriminate against any disability. WWDA is unique, in that it operates as a national disability organisation; a national women’s organisation; and a national human rights organisation.
In This Edition
Message from the Chair – by Margaret Cooper
So why does Women With Disabilities Australia exist? Here are some of reasons.
WWDA is the only organisation that does not discriminate against any disability – we are the only national multi-diagnostic organisation, and include women no matter what disability they have.
WWDA members are women first, disabled second. We share many of the concerns of other women, such as a need for adequate housing or in the case of relationship breakdown and domestic abuse, the need for a safe refuge. Some of us are lucky enough to be in training or at work and have become worried for ourselves or friends whose jobs may be threatened if government develops exemption clauses to the Sex Discrimination Act or the Affirmative Action Act or even the Disability Discrimination Act.
So we are a member of CAPOW! which is a network of national women’s organisations such at the YWCA, Australian Feminist Law Foundation, the Coalition of Activist Lesbians, and the Association of Non-English Speaking Women of Australia. Thanks to Sue Davenport, Helen Skeat and Fiona Strahan CAPOW! members are interested and supportive about our issues.
We have some very articulate members who help us to reach out to non-disabled women. Di Temby and I gave a paper ‘In the hands of the receivers’ at the National Women’s Health Conference and Joan Hume have a paper recently on ‘Disability, Eugenics and Feminism’; to the Women’s Electoral Lobby. And all of you will have talked to friends, neighbours and groups about what women with disabilities need to have a fair go.
However, we have a long way to go. When WWDA members speak at national conferences we are usually aiming our comments at the policy makers and academics who need educating about just why parts of life are so difficult for women with disabilities and exactly what changes need to happen. Unfortunately we are often sidelined into talking mainly to a group of women with disabilities who know all about the issues and don’t need to hear scholarly papers! See ‘Confernce Reports’ for an interesting letter on this point.
Letters to the Editor
Many thanks for the latest newsletter. I’d be interested in obtaining more information regarding disability friendly transport services and accommodation in the UK and Europe. The article by Patricia Woodcroft-Lee has renewed my enthusiasm to perhaps ‘give it a go’ overseas.
I wonder if you would like to include a piece of news in your newsletter. After a lifetime of mainly freelancing as a feature writer/journalist I have had my first book on the market around July in Australia. It is a work of fiction which examines aspects of human psychology, tracing thelife of woman over a forty year period. In her way this woman is disabled, not by birth, or disease, but by her won actions and of course, reactions by others, the book is titled ‘the betrayal cycle’. I am now on my second book which also delves into human psychology. In addition I would be interested in reviewing a book/s for WWDA.
Good luck with your efforts.
I’ve been a subscriber to WWDA newsletter for over 12 months. It was in the last issue that I felt included. The words ‘women with psychiatric disabilities’ were printed!
I figured it was up to me to redress the issue. Women, indeed people, with psychiatric disabilities are considered ‘the lowest of the low’. We’re the frightening ones, the malingering ones, the ones who unnerve the self concept of others, the ones we’d prefer invisible.
While I certainly don’t condone the patronising, charity only aspect of acceptance given to women, people with physical or intellectual disabilities I struggle to maintain composure when my welfare students, in a tertiary institution, complain that their clients with a physical disability were forced to spend time with the loonies in their ward!
I hold my temper and refrain form querying discrimination when time after time I apply for jobs in disability advocacy only to find my extensive professional experience isn’t worthy of a n interview because it’s in the areas of psychiatric disability not intellectual or physical. I am furious that ‘others’ can choose to divide women with disabilities and indeed ignore women with disabilities’ abilities.
For years I’ve worked in the community welfare field as a fraud. I’ve worked as an advocate for psychiatric disability (and indeed all disability) issues breaking my silence over personal experience only to actual consumers. The have been the only people I’ve felt safe to be o[pen with . I’d figured with my qualifications and employment experience, coming out about my own twenty years struggle with psychiatric illness would only be a detriment. Now, I know I was wrong, Along the way I’ve missed the few who have respected me, regardless of hospitalisations and treatment orders, as a human being, as a professional colleague. I’d imprisoned my tongue. I was living a lie, therefore I couldn’t tell, even less be respected for, the truth.
All empowerment begins with the self. And now on the eve of beginning by PhD in Mental Health, I know I’ve got to take up the flag on my own behalf, as well as others, Until I can respect my own struggles to survive, recover, heal, I cannot really assist others. I include the poem ‘I Remember’ published in Voices in the Brightness of Day: Writings by people with psychiatric disabilities, 1992, in the hope that in these heady days of the National Mental Health Strategy the words will speak of the alienation, despair, and ultimately survival that is truly part of the human condition.
What price for a future? A profile of Diana Qian – by Melinda Paterson
In 1996 it’s hard to imagine that people with disabilities in some countries are not only refused the right to basic health care and schooling, but they are regarded as non-entities, publicly shamed, often left to die. This was the situation in China less that a decade ago, when Diana Qian became a paraplegic and was told she would be better off dead’. but what is equally amazing is how Diana found herself in than position, six years after being diagnosed with childhood scoliosis.
At 21, WWDA-member Diana Qian (pronounced ‘Chan’) is a determined and friendly young woman. She is in her second year at the University of Western Sydney studying for a degree in Social Ecology. During the week she lives at the Hawkesbury Campus, returning to her family’s home in Hurstville on weekends. She hopes to work in social welfare and help people like herself with disabilities who suffer the additional fears and confusion caused by language difficulties. She’s come a long way from her birthplace in the People’s Republic of China, but she will never forget what it was like to be diagnosed with scoliosis at the age of four.
‘In China someone with a disability cannot get into a university, even if your marks are high enough to get you in — There’s no hope, nothing.’
Wishing to give their daughter a better future, Diana’s parent’s arranged for her to have surgery when she was eight to correct the malformation of her spine. This first surgery involved inserting a steel rod along the spine to assist in her future growth, just as you would tie the stem of a rosebush to a timber stake. But within two years, Diana’s condition has continued to worsen, and her parents took her back to the hospital, where they were horrified to discover that the doctor had failed to tell her parents that the rod her back had to be extended every three months.
‘So my spine’s growing and I’m not going to grow’ she says quietly, ‘It’s quite logical that my scoliosis is going to get worse’.
Again Diana’s parents searched for a solution. At the age of ten she was put in the hands of a renowned surgeon in Shanghai, who claimed to have had great succession correcting scoliosis. But sadly their was misplaced ; in truth, the man had only read about the method and had never tried before. He was effectively using a Diana as a guinea pig, with shocking results.
‘He tried his operation on me, and of course he failed, because now I’m a paraplegic. He basically broke my spine, he put seven bolts on my spine and, well, he made a few mistakes, because he used the adult size and I’m only a ten years old little kid [at the time] … so a few bolts broke the spine and crushed right through the central nervous system.’
The Qian’s were distraught. The resulting paraplegia had left their tiny daughter with no sensation below the naval and weak form the operation. Within 48 hours the surgeon had her back in the operating theatre to remove the bolts and destroy the evidence of his malpractice, In doing this so soon after the initial surgery, he almost killed her. Diana’s heartbeat stopped and she lost too much blood. Her family were told she would certainly die.
Amazingly, she clung to life (dashing the surgeons hope that she would perish) and a CT scan following the surgery revealed tiny shards of bone in the spinal chord, leaving no option but a third operation after two months to remove them. Ironically all three operations had been performed by the same man.
Over the next two years Diana’s family was torn apart, as her father plunged himself into library research and a worldwide letter writing campaign to find a cure and her mother gave up her job to stay with Diana in the hospital and care for her full-time. In the absence of nursing support, and with legal action against the surgeon pending, Mrs Qian slept on the floor beside her daughter, waking every three hours to turn her over so she wouldn’t develop bed sores. There was no rehabilitation and no money for a wheelchair, so Diana was mostly confined to the bed and completely dependent on her mother. She relied on her books and a steady stream of patients through the ten bed ward for her education, It made her grow up, as she became aware of her bleak future and what it would mean to her family.
‘I only think about my parents, and try to comfort them … In a country like China [the paraplegia] means I will not be able to get any education, I will not be able to work, I will not be able to achieve my full potential. I will be completely at the mercy of other people, so there’s no future for me.’
Instead, Diana ‘drowned’ herself in books, as she fought off her growing fear and the physical pain due to the rod which remained in her back, gradually crushing her rib cage to and causing irreparable damage to her lungs and heart. Her parent’s appeals to the other doctors in the hospital to remove it were ignored because of the powerful surgeon they were suing. Finally hope emerged, in the guise of an Australian doctor who answered one of Mr Qian’s letters. But he was refused access to the hospital by the Chinese government. In 1988, the Prince of Wales Hospital accepted Diana’s case The family dropped the suit and began saving for the airfares to Australia. Diana was twelve years old.
When Diana and her father arrived in Sydney they had $100.00 between them and didn’t speak a word of English. They had no understanding of the system or Australian ways. But two operations later, the hated rod had been removed and the hospital gave Diana a year of rehabilitation and, most importantly, her first real freedom – a wheelchair. The family was reunited in Sydney and eventually Diana left the hospital with renewed hope and the new English skills she had developed with the help of the medical staff and twelve months of watching Australian television.
But she still believed that her future, even in Australia, would be doomed because of her disability, as it had been in China. She was pleasantly surprised shortly after she moved to Hurstville to be told by a representative of the Department of Education that she must now go to school. It was obviously a crucial step in her life, indeed Diana’s whole face seems to light up with the memory of that lady.
‘I don’t even know her name … I regret that, I really want to thank her for what she did for me.’
Of course it was only the start of a whole new set of challenges for the petite young woman, as she faced language problems and isolation in high school. Today, as the only student in a wheelchair, Diana is faced with the daily challenges of living at UWS. But she is a qualified interpreter and full of plans and expectations for the future, She knows she has survived so much, and has too much determination, to let a little thing like that stop her from capturing her dreams.
‘I have a strong sense of individuality – I do what I want to do.’
Living with the effects of DES by Carol Devine
DES (diethylstilboestrol) was one of those ‘wonder drugs’ that turned out to be a disaster, not just for the women who took it, but for their children as well. Its main benefit was supposed to be preventing miscarriage, but as well as having terrible side effects, it turned out to actually increase miscarriages among the women who took it.
DES was a synthetic oestrogen commonly given to stop miscarriages in women in many countries (including Australia), roughly from 1941 to 1971. It was also prescribed in high-risk pregnancies, sometimes as an oestrogen replacement in menopause, as a post-coital contraceptive (‘morning after pill’), to suppress lactation, and to inhibit growth in young girls. In the women who took the drug, (DES mothers), there is an increase in breast cancer and cancer of the uterus, cervix, and ovaries. They need to have annual gynaecological examinations and mammography. It is estimated that 10 million people were exposed to DES in the USA alone.
DES daughters and sons
The first problem with DES was identified in the early 1970s, with an increased incidence of vaginal cancer in the daughters of the women who took the drug (one in a thousand). However, the problem affecting the greatest number of DES daughters is in childbearing. Up to half will have some kind of difficulty, including infertility, ectopic (tubal) pregnancy, miscarriage and preterm birth.
Many DES daughters have structural abnormalities of their reproductive organs. More recent studies have shown that other body systems are also affected, such as the immune system. There is concern as well that as DES daughters reach menopause, their incidence of cancer might increase.
Daughters exposed to DES should have annual colposcopies and ‘high risk’ care for their pregnancies. Additional oestrogen may be harmful, so they are often advised to avoid the contraceptive pill, for example. Among DES sons, there is an increased risk of genital problems, for example undescended testes and infertility. DES sons should have an initial urological examination, and monthly testicular examinations. The effect on DES grandchildren remains in questions.
The DES impact
The physical problems caused by DES can often generate emotional problems as well. Living with the necessity of frequent medical examinations, a fear of cancer, knowledge of deformities, and worry about the ability to have a healthy child adds to their revictimisation. Many men and women can harbour repressed hostile feelings which can destroy family bonds and impede meaningful relationships. DES mothers may feel intense guilt about having taken DES, and anxiety about the ‘time bomb’ effects of the drug on their children. So, the impact of DES on people’s lives can be great.
Since there have been so many years down the track, obtaining medical records can be difficult, and it is an impossible task for medical professionals to trace the population as risk. Women who were pregnant between 1941 and 1971 should try to remember what drugs they may have taken during pregnancy, and men and women born in that period should ask their mothers about DES.
In Australia, no adequate records of persons exposed to DES exists. There has been no organised publicity, nor any systematic education or follow up campaign regarding DES.
DES Support Groups have been formed so that DES exposed persons can share their problems and experiences, ease their isolation, and provide mutual support. They have libraries of information, and aim to be active in providing public education about DES. For more information contact:
Carol Devine on (02) 8754820 or write to:
DES Action Australia
PO Box 282
Camberwell VIC 3124.
News From the States
It has happened! A disability Consumer Action Group had its first Public Meeting late in March. Following several small meetings to form a Steering Committee and get it going, Calling for people with a disability , carers and family, nearly 20 attended, and there were 5 genuine apologies. Part of our platform is ‘Is your voice being heard?’ and they certainly were at our meeting, sometimes more than one voice at a time! Very clearly heard were a variety of issues on taxis, and the not so new accessible buses, and at the next meeting we will have a speaker from Transport and Works to listen and, maybe, take some practical action to sort these concerns out. Hopefully! Issues of cares, paid and unpaid, and respite care as well as the make up of the group were all raised, and if there had been more time many more would have come out. It’s a small start to a lack of consumer input that will be built on as we go and grow, aim for next meeting is to double the attendance!! What a challenge!
A Draft Report by Andrew Shaw, Consultant, is the first stage of Darwin City Council’s Anti-discrimination plan. Andrew’s brief included undertaking an audit of Council’s workplaces, facilities and public areas, as well as consulting with employees, and members of the public, Recommendations are included in the draft, and is in the hands of the Council for consideration action.. When (?) adopted and lodged with the Human Rights and Equal Opportunity Commission, it will possibly be the first such plan lodged by Local Government. The Territory leads again!!
While there has been further debate on the ‘Hot potato’ of ethics and politics, the Euthanasia Bill, it has still not moved far from the Legislative Assembly , despite some vocalising by both sides on the issue.
New group in New South Wales
An eager group of women with disabilities gathered at Redfern on February 10 to discuss the formation of WWD NSW. The meeting was opened by the Sydney-based Deputy Chair of WWDA, Terry Fletcher, and included an inspiring address by Jane Woodruff, Director-General of the NSW Department of Ageing and Disability and an informative welcome to WWDA by Executive Officer, Helen Skeat. A brainstorming session followed, in which women form a wide range of backgrounds talked about their experiences and their vision for a new state group. The issues we discussed included:
- the need for broad community education about disabilities (visible and invisible) and consciousness-raising within the group regarding specific disabilities
- problems of access to public transport and social venues
- limited accessibility to information and government services, education and employment
- gender-based discrimination by service providers
- sexuality and the role of body image
- sexual harassment and domestic violence against women with disabilities
In regard to the group itself, everyone believed that it was important to encourage all members to contribute their views, and we rejected the exclusivist model of management which has been used previously in other disability organisation With this in mind, an Interim Steering Committee of eleven women was chosen to assist in t he formation of WWDA NSW, with all future meetings of this committee (held monthly so far) to be known as ; ‘working meetings’ and remain open to everyone on the mailing list, which currently stands at about 52 women.
In addition to establishing a strategic plan for the next six months, the NSW women place great emphasis on peer support and the social aspect of our group. The first such get-together – a picnic at Centennial Park was held on a fine Saturday afternoon, March 23. We are looking forward to similar events in t he near future, as we get down to the nitty gritty of establishing what we hope will become a dynamic and energetic force for the advancement of women with disabilities in NSW.
Victorian Women With Disabilities Network
It’s amazing how time goes so fast. I’m finding it difficult to believe it’s June – half a year has gone by already. We are also coming up to our annual general meeting to be organised at the end of June or early July.
It’s been an amazing year, with most of our energy and focus on the Women with Disabilities Health Project. We’ve just finished the first stage of the project which involved writing a report on the health needs of women with disabilities in Victoria, that was taken from the returned questionnaires. We have also been granted extra time to finish the project by the Victorian Health Foundation. The second stage involves employing a woman to put a kit together form women with disabilities. It should be finalised by September. The report will also be printed up and made available.
By the way, if there is any woman interested who are living in Victoria, who want to nominate themselves for the Management Collective, for the Victorian Women With Disabilities Network, or would like to become members, contact me at DEAC on (03) 9650 2533. Bye for now.
Disability Discrimination Act Standards
What are Disability Discrimination Act Standards?
The Disability Discrimination Act (DDA) provides broad protection of the rights of people with disabilities. It spells out the fact that it is illegal to discriminate against anyone on the basis of their disability, provided that not disciminating does not cause ‘unjustifiable hardship’.
DDA Standards will deal specifically with different areas, such as transport and education. Standards will look in detail at how the DDA will apply to these areas – for instance: What are the responsibilities of primary schools? What steps must they take to make their education programs accessible and relevant to all pupils? When do they have to do it by? What is the limit of their responsibility? The Standards will be legally binding, so that for instance, primary schools will be obliged to comply with the Standard. If a Standard stated that all primary schools must ensure deaf interpreters are available for students by the year 2000, then all primary schools would have to do this.
Are standards a good idea?
The case for
DDA Standards have the potential to make people’s rights and obligations under the DDA clearer and easier to understand, enforce and comply with by –
- setting out in more detail how the DDA applies in particular situations
- giving more detailed definition to concepts with the DDA does not define, or only defines in general terms and setting out more detailed principles to guide key decisions under the DDA.
The case against
As long as a person or organisation is complying with a DDA Standard, it means that no-one has grounds to bring a complaint against them under the DDA, even if the person is being discriminated against. If a Standard is introduced which states that ‘unjustifiable hardship’ can be used as an excuse for not complying with the Standard, then even bringing a successful complaint under the DDA Standard may be difficult.
If DDA Standards are introduced to cover all areas of the Act, it is extremely important that as many people as possible have input. Standards will affect the lives of people with disabilities. Standards have the potential to strengthen the DDA, but they also have the potential to weaken it.
How are Standards written?
Committees are formed to write each Standard. These committees include representatives of:
- service providers; and
- disability consumers.
The disability consumer representatives are there to represent your views. Each time a Standard is written, the input of disability consumers is called for, both through organisations such as WWDA, and from individuals.
How can YOU get YOUR voice heard?
- WWDA is a part of the National Coalition. As a member of WWDA, you can contact us to put your point of view across. You can contact the National WWDA office, or your State group or State NEC member. We also have the opportunity for nominating people to sit on the Standards committees.
- If you are a member of a another organisation that is a part of the Coalition, you can also contact them.
- You can also respond to any draft standards or discussion papers that are put out during the development of any of the standards as an individual. You can receive the draft standards etc by having your name put on the mailing list (see below).
The Coalition distributes information about the Standards process. This includes background papers, draft Standards, and a 2 monthly newsletter. To go on the mailing list for the newsletter, and for all the information about the Standards please contact:
National Coalition for the Development of DDA Standards
PO Box 710
Mawson, ACT 2607
Distorting images, invisible images: Gender, disability and the media
A few issues ago we brought you news of the Disability Representation and Participation Research Project. Helen Meekosha and Leanne Dowse, from the project, have been looking at the ways in which people with disabilities are represented in the mass media and how this impacts on their participation in social, cultural and political life.
They have just completed a draft paper on gender, disability and the media entitled Distorting images, invisible images: Gender, disability and the media. The paper examines the representation of women with disabilities in the media from a feminist critique, arguing that women have been eroticised and subject to the male gaze, seen as paragons of beauty or in conventional roles as homemaker. The paper argues that this gendered perception of women excludes women with disabilities. It examines from a disability rights perspective the impact of predominant images of disabled women as dependant and in need of care, situated in medicalised bodies or as simply invisible. The impact of the disability rights movement on the media is considered. The paper concludes that, with some exceptions, while less controlling gender images have emerged under the influence of feminism, these do not offer an account of the invisibility and stereotyped coverage of disabled women.
The paper is in draft form, but a copy can be obtained by contacting Leanne Dowse at the School of Social Work UNSW Sydney 2052 or phoning (02) 358 4742, fax (02) 662 8991 or email H.Meekosher@unsw.edu.au
Helen and Leanne are currently preparing a paper on Women, Disability and Citizenship to be presented at the International Conference on Women and Citizenship at Greenwich University, England in July.
Progress Report on the Access Policy and Access Technical Committees’ Review of the Building Code of Australia
These two committees in the past few months have made considerable progress towards recommending the removal of discriminatory provisions in the Building Code of Australia (BCA) and recommending inclusion of access requirements to give people with disabilities equal and dignified access to buildings and the facilities and services within buildings.
A sub-committee of the Policy Committee developed a policy paper to guide the Technical Committee in its development of access requirements for people with disabilities. Consumers were on this committee together with Attorney’s General, Human Rights and Equal Opportunity Commission (HEREOC) The Disability Discrimination Commissioner and representatives of the Australian Building Codes Board Building Owners and Managers. Comparisons with the Disability Discrimination legislation of the USA, Great Britain and New Zealand and their access provisions were considered in the development of the policy paper.
The policy position paper applies only to new buildings with the exception of class 1 buildings which are private dwellings and class 2 buildings which are flats and apartments. These are to be considered at the next policy meeting. The guiding principles of the Policy Committee was that access must be able to be operated as the person begins to gain access. For example, no-one should have to obtain the help of a building manager to operate a stair lift.
The Technical committee has a number of Working Parties which have been researching access requirements and the application of technology over the past few months. The Policy paper was developed to guide these Working Parties by providing a framework and setting parameters within which they were to operate. The Working Parties are to complete their tasks by the 29th March. They are also to review all parts of the access standard AS1428 to identify what needs technical change and what needs to be changed from advisory to mandatory.
The Working Parties presented thier final recommendations to the Policy and Technical Committees and will be going out for community and industry consultations in the near future. They are also to review all parts of the access standard AS 1428 to identify what needs technical change and what needs to be changed from advisory to mandatory. A Working Party has been established to consider a framework for implementing the proposals, ie whether they should be included within the BCA, or in the existing access standard AS1428.
Habitat II Conference – Istanbul, Turkey 3-14 June 1996
Habitat II is the Second United Nations Conference on Human Settlement. It is also the last global Conference of the century. The two key themes of the Conference are ‘Shelter for All’ and ‘Sustainable Human Settlements.
The concept of ‘Shelter for All’ means different things to different people, though most of us agree that adequate shelter is a basic human right. Unfortunately, some UN states – and the USA in particular – are still haggling over the extent of governments’ responsibilities in providing adequate shelter for their citizens, and they are a long way from acknowledging such a fundamental right.
The March Edition of Habitat Update, published by the Australian NGO Secretariat, provides a summary of the final conference in preparation for Habitat II (PrepComIII) held in New York in February. PrepCom III was regarded as successful, despite some setbacks, and the Australian participants demonstrated their commitment to working together with non-government organisations (NGO’s). This is of major significance because the general view is that the NGO’s ‘will be the key to extending the local agendas to incorporate the outcomes and objectives of Habitat II’. In other words, long after the rhetoric has ceased, NGO’s will continue to monitor governments’ commitments and fight at the local level to ensure that they become reality. And since the same issues have been on the agenda since Habitat I in 1976 it’s obvious that there is still a great deal to do.
One of the Conferences’ aims is to develop strategies for improving the l8ving environment of all people ‘with special attention to the needs and contributions of women and vulnerable social groups whose quality of life and participation in development have been hampered by exclusion and inequality, affecting the poor in general’. WWDA considered it important to become involved in the debate by drawing attention to the needs and wishes of women with disabilities within the concept of ‘Shelter for All’.
WWDA wrote a draft discussion paper, ‘Housing Issues for Women With Disabilities’, (an extract being considered for publication by National Shelter), and we submitted a Summary paper to the National Consultative Council. We also sent copies of the Summary to anyone else who might be interested, and who might be persuaded to speak up on behalf of WWDA. You’ll be pleased to hear that our lobbying was successful; other NGO’s particularly and the major points of our Summary were published in the latest Habitat Update.
WWDA has gained recognition and respect from the National Consultative Committee, government representatives, and from other NGO’s. Our hard work over the last 12 months has ensured that issues of concern to women with disabilities are firmly on the world agenda: the revised Statement of Principles and Commitments and Global Plan of Action for Habitat II now include a remarkable number of references to ‘women and persons with disabilities’. We are confident that WWDA will continue to play a substantial part in lobbying for greater powers for women with disabilities which will provide them with opportunities for real choices.
The National Women’s Health Conference, Canberra November 1995
Six women with disability from Brisbane, had the opportunity to attend the National Women’s Health Conference in Canberra in November 1995. We are part of a lobby group for women with disability and their health. We have been together nearly two years and have looked into many issues.
We heard about the Conference on Women’s Health and decided it would be a great opportunity to meet other women, find out what was happening for women around Australia and also to let other women know what our issues are. There were about 750 women from around Australia that attended. We applied for funding for our trip from many sources and were successful. We would like to thank the Conference Sub-committee, Queensland Women’s Health Network, Logan Women’s Health Centre, Ipswich Women’s health Centre and Brisbane Women’s Health Centre for their support and funding to enable us to go.
Our disabilities include intellectual disability and vision impairment. We feel it was really important for us to be at the Conference as there were not many women with disability represented there (and we were the only women with our disabilities ) and we were able to contribute to workshops and speak at sessions. It was good to see women with physical disabilities there and hear them voice their issues.
Some of us were disappointed that sessions presenting issues relating to women from non-English speaking background did not consider women who also live with disabilities. These women face a double disadvantage. Some of us felt that the papers that were presented were too complex and had too much jargon in them. It would have been easier for us and everyone to understand the content if authors had used simple English.
We enjoyed the papers and workshops that were presented on disability especially those by Miriam Taylor, Niki Edwards and Robin Van Den Hoek. They used a ‘hands-on’ approach that was lots of fun. We also enjoyed the panel presentation on Beijing. Slides were shown during Miriam Taylor`s paper and this gave us a greater appreciation of China.
We feel that there was not enough attention given to intellectual disability issues by other presenters and in particular by the papers given on violence. Women with disability experience higher levels of sexual violence and sexual harassment in the workplace, than any other women and this needs to be recognised.
We would have liked more emphasis on intellectual disability issues especially the difficulties we face with employment, working in sheltered workshops and housing. “We can and do live in ‘normal ‘ relationships – marriage.”
We attended many, many workshops and found this quite tiring. “It was very tiring, busy and not easy because there was so much going on all weekend.” It was great going to the conference on Saturday night where we met up with more women. On Sunday one of our members met up with Carmen Lawrence and alerted her to the issues women with disability face. The Aboriginal women who did the singing were very good on Friday because they shared their feelings on women’s health.
In conclusion, we feel our voice was heard and our issues became part of the resolutions. However, we are not sure about what specifically will be the issues that will emerge from this. It was important for us to be part of this National event for women and to let other women know the issues we face.
Donner Best, Leanne Sales, Ann Low, Juliet Bryden, Chris Flaskas, Sharon O`Shea
I Remember – by Linchay Bone
Walking through Civic
slapping my head from side to side:
a punch and judy show for shoppers,
oblivious to stares I yanked my hair
anything – to banish the voices;
the pushing infuriating
moments of infuriation
when my throat
were my worst enemy
the nights of frozen fright
windows tight door jammed
wind locked in slits moaning
when the danger was inside
and I couldn’t get out.
I remember the screaming fits
the cup and plate smashing
in the sink
anything to block
the mind deafening conversation
fraying my head.
‘Isn’t there anything
that can be done?’
I remember there wasn’t.
Beyond Psychoppression: A Feminist Alternative Therapy,
Betty McLellan, 1995, Spinifex Press, Melbourne. 192 pages
Don’t be put off by the title! It sounds really heavy and very serious, but if you’re interested in any form of psychotherapy or counselling as well as in feminism, then this book is for you. Even if you find McLellan’s alternative therapy concepts unacceptable (though I can’t imagine this would be the case!), you’ll find them at least interesting, and if nothing else, you will get some food for thought.
I’ve spent a great part of my adult life searching for philosophies which I can apply to various aspects of my life, particularly during crises and confusion. I have also tried to find a therapist who could help me cope with some of the dark things in my life. Most of the texts I have read and most of the therapists I have encountered to date have left me feeling disappointed and angry: they’ve been ineffective at best and, at worst, extremely destructive. It wasn’t until I read Beyond Ppsychoppression that I realised why I was so dissatisfied, both with the texts and with the therapy methods to which I had been subjected. So what’s so great about this book?
Well, first of all, it is refreshing to read a text which was written from the perspective of an Australian woman who has had several decades of experience in psychotherapy, and who is also a committed feminist in the true sense of the word. Secondly, you don’t need a PhD to understand it! Beyond Psychoppression is written for women like you and me who are trying to come to grips with day to day living, who are looking for a bit of help along the way, and who don’t have the time and energy to wade through convoluted quasi-academic posturings. Well, you know what I mean!
The third, though certainly not the last, good thing about this book is that you can read it without the need for extensive background knowledge of feminist history or psychoanalysis. In Part 1 of her work, Betty McLellan gives us a very clear, concise and relevant overview of the key players in both fields and of the development of both feminism and psychotherapy.
You’ll find the analysis of mainstream therapies in Part 3 a great eye opener. McLellan terms them “Blame-the-victim Therapies”. She exposes the destructive theories of Freud, theories which are still the cornerstone of traditional therapy methods and give “legitimacy to the male supremacist social structure”.
She attacks the Humanistic therapies which surfaced in the 1960s and ’70s and which are characterised by catch-phrases such ‘I’m not responsible for how you feel’, ‘If it feels good, do it’, and ‘Let it all hang out’. The criticism here is that despite a more benign approach to psychotherapy methods they are still “aimed at white, able-bodied and mostly middle-class men, and not at women or other marginalised people. It was applicable only to those for whom personal and social freedom was a real possibility, and not for the oppressed…”
New Age and popular psychologies are examined critically. Their message is very simple: you only have to love yourself, approve of and accept yourself, and your life will turn around. McLellan points out that while it’s very alluring to believe that we have power, that we are in control of our own lives, the truth of the matter is that we are not. In the end, the victim is still blamed: you can do it, you’ve been told you can, and if you don’t succeed it’s your own fault. Women are, therefore, “still encouraged to blame themselves for everything in their lives that causes them distress”, to see themselves as sick in need of healing, as deficient and in need of improvement.
In the second part of the book, McLellan identifies oppression as the cause of women’s distress. She rejects the theories that women are responsible for their own situation, and that in fact they have the power to change it. She also berates some feminists who insist that women have that power, that women need only change their behaviour in order to succeed. Issues such as violence in the home, rape, pornography, and reproductive technologies, all of which add to the oppression that women feel, are examined. The author is adamant that the more oppressions a woman suffers “on the basis of race, class, disabilities, etc., the greater the potential for emotional and psychological distress”, and she points quite clearly to the fact that traditional, New Age and popular therapies actually add to the oppression of women by encouraging them to blame themselves for the problems they encounter.
I found the discussion on the differences between “equality” and “equity” of great value, and I’m tempted to send it to all ministers to help them come to terms with these issues! The related matter of access to therapy is an interesting one. McLellan points out that the assumption that therapy is available to anyone who wants it is a fallacy. If you’re different, in terms of “race, ethnic background, physical and intellectual abilities, sexual orientation and so on”, you’re not mainstream, you don’t fit, you don’t have access to therapy, and even if you do belong to one of those so-called majority groups, but you choose not to play the destructive games of therapies, then you miss out as well.
McLellan devotes a chapter to passion and justice and says that Western therapy calls on people to be dispassionate about their experiences, to be rational and objective, to ignore completely the passions such as guilt, anxiety, depression, hostility, bitterness, resentment, frustration, boredom, resignation, fulfilment. Ignore them at your own peril, is the message: repression only serves to stoke the underlying sources of a woman’s oppression.
Being told to forgive those who have sinned against you, to forgive those who violate and oppress you or you can’t move on, are indeed dishonest, dispassionate and unjust requirements. McLellan points out that these issues are by no means only individual but are socio-political as well. “We need to develop an alternative therapy capable of caring for all of us ‘mad’ women during those times when the constant, day to day battle with patriarchy overwhelms us…” and “…the therapy we develop must be worthy of us.”
Feminist therapy moves away from blaming the victim, away from forcing the victim to be dishonest about her own feelings, to minimise them, to trivialise them, which is what current therapies do, according to McLellan. Feminist therapy, in contrast to mainstream therapies, starts out with “the assumption that one woman talking with another woman about a problem she’s having is a normal occurrence in life. No therapeutic aims are needed. What is needed is for the therapist to be real, and for the situation to be as ‘normal’ as possible.” The feminist therapist acknowledges the power imbalance between therapist and client and does not misuse that greater power. The feminist therapist does not presume to know what her client ‘really’ means. And remember: a female therapist is not necessarily a feminist therapist!
Like I said, it’s plenty of food for thought, and by no means the end of the discussion!
Research and Policy Officer
Nervous Arcs and the Body in Time
Melbourne, Spinifex Press, 1995, 239 p.
Jordie Albiston and Diane Fahey
This book consists of two entirely separate collections of poetry. The authors are both established poets, both lived in Melbourne and oddly enough are both at their best when writing about death and dying, but the style and content of their verses are very different.
Albiston is the more self-consciously ‘literary’ of the two, Her pens bristle with historical and literary allusions, so much so that a page of explanatory notes is required to guide the less erudite reader throughout the labyrinth. Underlying her whole collection and unifying the diverse themes is her bleak existential world view. She appears to share the perception of many of the modern writers to whom she refers, that human beings inhabit a rather threatening universe that is basically random and meaningless. There is not much cause of optimism. The only meaning in life that is possible, is that which the individual can find within themselves.
Albiston’s personal quest for meaning appears to be bound up with her struggle against the bad deal which she perceives women have had throughout history., Variations on this theme appear in poem after poem, form the biblical Susanna (Susanna and the elders) through to the witch trials of Salem, to the poet herself, stalked by ‘loud men in slow cars” while out for a stroll (Nice afternoon).
Her vision of herself as struggling against the constraints which society imposes on women is encapsulated in the first poem of the collection ‘the room’. This is a reworking of the myth of the princess in the tower. A women, locked in a room, in a suburban house, cuts up old tapestries, attacking their conventional imagery, chopping up queens and goddesses, but leaning the ‘madwoman’ intact. She concludes, ‘I will burst free no phoenix no dragon but me”. The allegory extends to Albistons’ poetic style, she chops up conventional prose sentences at odd internals, to form verses and ignores punctuation entirely. This is effective in many cases, in other simply irritating. The tone is edgy, the sentences short, jagged, unpolished, stretching out to form the ‘nervous arcs’ of the title. The style works best in ‘Eulogy’, inspired by the death of the poet’s grandfather and the sequence of poems entitled ‘Cancer in June’ commemorating the death of her friend, Helen, form lung cancer. Eulogy is simple and moving.
‘thirty-two of my years
always contained you until
now you sleeping at last and
me no longer a granddaughter.”
In ‘Cancer in June’, too, there are no literary allusions or private mythologies and the language is powerful and direct as she contemplates the contrast between her friend on her graduation day and in hospital:
“A photograph propped up by the sick woman’s bed
just on a year ago smiling and holding a rolled degree
and Helen in hospital…..
A winter graduation in death.”
Fahey’s poems share something of the same bleak world view, but they are much more concerned with every day experiences and the style is much less convoluted. The first group of poems deals with childhood, school friends, teachers, going to the movies, the first dance and the evocation of a darksome to childhood – the hint of sexual abuse by an uncle: ‘year after year/I went there for holidays/why don’t I remember?”
Unfortunately in this section Fahey is also concerned with that, by now tiresome cliche of Australian literature, the pre Vatican II Catholic childhood, and the consequent rejection of a religious world view as unacceptable or unnecessary. One longs for the emergence of a writer who can reflect the experience of those of us who have survived such a childhood and retained both our faith and our sanity. That would be an original theme!
The sequence of poems entitled ‘In love and Hate” movingly reflects the course of a failed relationship and “in the Middle of Life” the search for meaning in life. The poet is ‘…at pains to be responsible for this one life/To try to get it right’ She finds meaning in friendship, poetry and nature.
The most powerful sequence in the whole collection is Fahey’s “In memory” which chronicles in simple unaffected language the events surrounding the death of the poet’s father, from the moment when he is told of the terminal nature of this illness, to the family visit to the grave two years later. Anyone who has lived through a similar experience will find that the poems vibrate with such terrible authenticity that it is almost impossible to read them. The family ‘Will do what can done. when nothing can be done”. the daughter shaves her father, they listen to music, to the writer’s own poems, they watch a video:” even with death so close/Life must go on”. The reaction of the family after the father’s death is beautifully evoked in the poem ‘here’. “by the fifth day we had begun to know you as an absence.” the closing stanzas of this poem are the closest Fahey comes to finding and inner peace.
“there are not presences or absences
there is no death or life.
What you were or are
Retains all its force
Of mystery, father
now a voice in the soul
I learn to know you
A little better”.
After the intensity of the “in Memory” poems, her final sequence “Sites” reads almost like a coda, in which the poet seeks solace in the quiet evocation of the natural world and the memory of places (the Blue Mountains, Venice) which have significance for her. The two collections provide us with insights into the thoughts of two women trying to construct meaning for their lives in an age bereft of eternal verities. The book is not an easy read, but given a little time and patience on the part of the reader, a rewarding one.
The Horse Whisperer
Bantam, RRP $29.95
Nicholas Evans has woven a wonderfully poignant story of love and passion around the fate of a young girl and her horse. Nicholas Evans in this, his first novel, set in contemporary America, bravely confronts the subject of permanent physical disability and the attendant psychological and social ramifications rarely tackled in a work of fiction. He shows tremendous insight and sensitivity as his characters deal with the tensions, realisations of lost girlish dreams and psychological frustrations wrought by disability.
Grace and her horse Pilgrim are involved in a devastating accident with a 40 ton truck. Both Grace and Pilgrim are horribly injured and mentally scarred. Grace survives but is left permanently disabled. Pilgrim too survives, and although he recovers from the physical injuries the trauma remains, making him wild and untouchable. It is Annie, Grace’s mother, a modern day career woman who realises that any hope her daughter may have to emotionally heal is inextricably entwined with the horse and she resists all veterinary advice to have Pilgrim destroyed forever.
Grace is angry, resentful and uncommunicative and refuses to have anything to do with Pilgrim,. It is with resentment that Grace accompanies her mother and the horse to the Montana mountains to see Tome Booker, the ‘horse whisper’. Tom Booker thought Pilgrim to be beyond help, but when Annie drives the horse trailer into his Montana ranch home he agrees to try and help the horse. Tom’s family reluctantly welcome the assertive English woman, her sullen daughter and crazy horse into their home, and later find the trio have entered their hearts as they all share in the miracle of love and healing.
The author has cleverly used the story of a girl and her horse as a catalyst for the other story in his book, that of the forbidden love that develops between Annie and Tom. As Grace and Pilgrim learn to trust again under the gentle and loving hand of Tom Booker so too does Annie find herself, and a love that changes her life. The climax of the story is the climax of the love Tom has for Annie and for her daughter and the reader is overwhelmed by the innate decency and courage of the man known as the ‘horse whisperer’.
I highly recommend this book, a thoroughly compelling read that will tug at your heart strings.
Jennifer Anne Lydon
Being a mother with a disability
Kerri Thorne, a member of WWDA, is doing research which is aimed at gaining an understanding of the meaning of motherhood for women who have a visible physical disability. Kerri is interested to talk to women who have children under five who live in metropolitan Sydney. If you would like to participate in the study , you will be asked to describe your experiences of motherhood. For example, you may wish to discuss issues such as the changes and consistencies, the positive and negative aspects, the effect of motherhood on your life, your relationships, and your view of yourself.
If you are interested in participating, or have any questions about the study, please contact Kerri. Further information on the project can then be forwarded to you. Please note that various procedures will be in place to safeguard your privacy throughout the study.
88 Glebe Street
Glebe NSW 2037
Ph: 02 692 0842
Confidentiality will be assured.
Recently Received Books
The Australian Women’s Directory
Edited by Kaye Healey
A comprehensive guide to women’s organisations and services. This is the first edition of the Directory and lists 2000 entries of women’s organisations and services, organised into 50 different categories.
It can be purchased form Pearlfisher publications 226 Darling St Balmain NSW 2041.
Reclaiming our rights – Access to existing police, legal and support services for women with disabilities or who are deaf or hearing impaired who are subject to violence.
NSW Department for Women
This report was written be Liz Mulder, and found that women with disabilities who experience violence have a great deal of trouble accessing effective services, and are often disbelieved, which leads to further cycles of violence as people remain stuck in situations in which they are subject to violence. The next copy of WWDA News will have a summary and review of this report.
For more information contact:
NSW Department for Women
100 William St
What really happened at Beijing? How did different sectors get their voice heard? This collection of reports from Beijing was collated by the National Council of Women of Australia and contains 30 reports of women who attended the national conference. For more information contact:
National Council of Women of Australia
PO Box 6544
East Perth WA 6892
Too sick for work?
Disability reforms and the disbelievers
The Disability Reform Package Working Group held a phone in to get information from people about their experiences with Social security. It includes some statistics about the people who phoned in, case studies and recommendations. Amongst others, it recommends a single payment for people with disabilities to simplify the system of payments, and direct payment to people who encounter extra costs on account of their disability. For more information write to:
Welfare Rights Unit,
154 Sackville St
Collingwood Vic, 3066
Ph: (03) 9416 1409
3 – 14 June 1996
“Habitat 11: United Nations Conference on Human Settlements”, Istanbul, Turkey.
The subject being ‘housing and shelter for all’. WWDA has been asked to contribute to a paper on ‘women and housing’. If you would like to contribute to the paper you can contact Diana or Helen at WWDA.
Tel no: 06 242 1310; TTY: 06 242 1313; Fax 06 242 1314.
13-15 June 1996
Third National Conference on Unemployment Policy and Practice, Brisbane.
For more information, contact:
Dr Richard Hicks, Conference Convenor,
School of Social Science, Carseldine QLD 4034
Ph: 07 3864 4995
12-16 August 1996
Third Paralympic Congress – A world congress on Disability, Atlanta, Georgia, USA.
Contact: Atlanta Paralympic Organising Committee,
1201 West Peachtree Street, NE,
Suite 2500, Atlanta, GA, 30309-3448, USE
Tel (404) 875 9380
4-6 September 1996
National Conference on Homelessness
Contact: Cassandra Austin,
Council to Homeless Persons,
5th Floor, 140 Queen St
Melbourne, Victoria Australia 3000,
Ph 03 9606 0766, Fax03 9606 0405,
5-8 September 1996
Beyond Beijing – from words to action
The seventh international conference of the Association for Women in Development
Contact: Karen Mulhauser
1511 K Street, NW, Suite 825,
Washington, DC 20005 USA
Fax 202 463 0182
16-20 September 1996
Rehabilitation International 18th World congress – ‘Equality through participation – 2000 and beyond’, Auckland NZ.
Contact: Congress Administrators,
PO Box 2009, Auckland, New Zealand,
Tel 64-9-360 1980 Fax 64-9-376 1980
14-18 October 1996
Painting a picture of Best Practice – 1996
National Respite Conference
hosted by Q-Link Interchange (the ACROD Qld Respite Sub Committee).
Phone 07 3369 0477
Fax 07 3369 1512
8 – 10 November 1996
“Living With The Late Effects Of Polio”, Sydney
This conference aims to: provide a forum for polio survivors; create an awareness and understanding in the community about living with the late effects of polio; learn strategies to manage the late effects of polio; provide mutual support to people living with the late effects of polio; and focus attention on the invisibility of the polio community. It will include discussion of gender specific issues.
For more information contact Jean Skuse,
PO Box 1387,
Rozelle NSW 2039.
Tel no: (02) 810 7846
14-16 May 1997
“They said we’d never make it: Ageing and disability”
This is an international conference being held in conjuntion with the newly formed Asian and Pacific Cerebral Palsy Association. Session themes will include – health, home, carers and finances. Papers are being invited from people with disabilties.
Contact: Sue Balandin,
Spastic Centre of NSW,
PO Box 184, Brookvale 2100,
Ph 02 9975 8289, Fax 02 451 4877,