‘In/Different Health: Rethinking Gender, Disability and Health’
Written by Helen Meekosha. This paper was delivered as a Keynote Address by Helen Meekosha for Women With Disabilities Australia (WWDA) at the 4th Australian Women’s Health Conference, held in Adelaide, February 2001. Copyright 2001.
I’d first like to acknowledge the Kaurna people whose land we are on today, the traditional owners of this land.
I am going to have to vary my paper somewhat due to the events of last night. While we were having our conference party, the ABC was broadcasting the 7.30 Report. The program featured the conference “Disability With Attitude (DWA): Critical Issues 20 years after International Year of the Disabled Person” in which I had been involved.
To my absolute shock, I heard Professor Grant Sutherland, researcher at the Adelaide Women’s and Children’s Hospital and the Australian contributor to the Human Genome Project (HGP) state, “if we can prevent the birth of handicapped individuals, then I think that society will be better off. I’m sure for example that Dr Shakespeare would prefer not to be handicapped.” (ABC 7.30 Report 20/02/01) This latter comment referred to my good friend and colleague, Dr Tom Shakespeare, well known for his activism and writing on bio-ethics and disability, who was a keynote speaker at the DWA conference. Tom replied, “I’m happy the way I am. I would never have wanted to be different. And lots and lots of disabled people are saying, ‘Our lives are viable. We’re not tragedies. We have a good quality of life. Don’t assume that the world would be better off without us.’ ” (ibid)
In response to these shameful comments by Sutherland, in the early hours of the morning, Carolyn Frohmader, the Executive Director of Women with Disabilities Australia, emailed feminist and the disability lists around the globe and commented that, “If Professor Sutherland’s value laden research is Australia’s ‘contribution’ to the Human Genome Project, then Australia should hang its head in shame” (email February 21st 2001).
As disabled women, this is a very disturbing event for us. I am pleased that the Australian Women’s Health Conference has issued a media release denouncing Sutherland’s comments. Many disabled women have feared that those involved in the HGP and similar research in Australia held these discriminatory and offensive positions, but as far as I am aware, nobody has actually publicly espoused such views in the media in recent years.
The point needs to be made that Sutherland’s remarks represent an all-too-common elision between the scientific rational (even respectable) discourse that society would be better off if we could prevent the birth off disabled people, and that particular individuals with impairments, such as myself or Tom Shakespeare, must hate the way we are, and would prefer not to have those impairments – i.e. prefer not to have been born. He seems unaware of the way in which how he speaks (cloaked in the cadences of medical/scientific authority) devalues the individual identity of people with impairments, who are made to feel that both society and they would be better off if they were dead. The medical and technical discourse of gene manipulation denies any space to the experiential discourse of the lived person.
I want to return to the 1985 Australian Women’s Health Conference held here in Adelaide; Rosemary Martin, a disabled woman gave the keynote address. I looked at her speech last week and I have to say it’s with some sorrow that, in many respects, I’m going to say the same things. Then (in 1985), there was a stunning absence of connection between the women’s health movement and disabled women and indeed, I have to say that I don’t think that much has changed today. The women who spoke at the Women with Disabilities session at this conference raised the issue about why we’re just talking to each other again. Why was not disability part of all the debates in this conference, issues such as contraception, pregnancy, the role of health professionals, screening programs, abortion and a host of other issues that have been covered during the last two days?
What Is Disability?
So, I need to go back to basics. What is disability? My notes for today’s speech are more pertinent than ever after last night’s comments by Sutherland. I believe that medicine still has the authoritative voice in the discourse of disability, followed the voices of the rehabilitation and health professionals, who act as agents of surveillance and monitor disabled women’s bodies on behalf of wider society. Disability is essentially declared as a problem to cure, or treat, or rehabilitate (meaning to restore to former status). Following Professor Sutherland’s remarks last night I now will add that disability is seen as a problem to eliminate.
To say that disability is a problem is somewhat superfluous; in our everyday speech, we use blindness, deafness, mute, as synonyms for ‘lack’ or ‘ignorance’, our ‘problem’ is built into the word itself. But, the meaning of disability can only be understood when it is acknowledged that society disables us through prejudice, exclusion and rejection. We live in the country of the able-bodied and disability is still charged with negativity and shame. We are declared a burden on others and historically the feminist literature has taken a problematic position on care, where women who care are seen as exercising ‘a labour of love’. The cared for – also mainly women – were not visible in this literature. We are still often seen as a cost to society and a public offence. Disability points to a lack and that things should be otherwise and I will talk later about the implications of prenatal testing and selective abortion.
Susan Sontag has argued that chronic illness or disability seems to mean chronic misery or unhappiness in the popular imagination. Disabled women often internalize these concepts adding to the enormous stress already placed in our lives. Yet, ironically, the most pressing problems for us are more often social, political, economic and cultural, and not the restoration of our ‘lack’. In order to be able to catch my plane later today, I either have to leave the conference early or risk missing the flight. Access Cabs in Adelaide informed me that I cannot have a taxi at 3.30pm as they are all booked. It is not an uncommon experience for disabled women who travel interstate to miss flights due to taxi problems. Yet this is not a problem encountered by women without mobility impairments.
It may be appear to be a minor example of exclusion – but access to transport may mean the difference between paid work or staying at home, participating in groups, political parties, arriving at the doctor on time, missing the movie. The stress of never knowing whether your taxi will be on time results in cumulative anxiety and an increasing reluctance to leave home. Governments are extremely fond of talking up ‘participation’ in the community and in civil society, but participation presupposes accessibility not simply as a means, but as an essential part of the human condition and Australia falls well below other industrialised countries in terms of access. I want argue, following Axel Honneth, (Honneth 1995) that social exclusion is a form of disrespect and a lack of recognition of our moral worth.
Hate abuse and hate violence also constitutes part of our everyday experience as disabled women in public spaces, from strangers, from public officials, in our workplaces. Our daily encounters in both the public and private spheres mirrors Sutherland’s comments that society would be a better place without “handicapped people”. Physical abuse, verbal vilification, the unwanted gaze leave us in emotional distress. It invades our sense of self and reinforces a sense of worthlessness.
A Central Paradox
My main argument in this paper is that a central paradox exists when we look at the interconnections between gender, disability and health. We know that disability is not a deficit, not an abnormality to be cured or eliminated, that disability is not incompatible with life’s satisfaction, yet disabled women are at higher risk of acquired ill health. We are at high risk of chronic urinary tract infections, major depression, osteoporosis. Most gynecologists argue that women who use wheel chairs are prime candidates for Osteoporosis and recommend hormone replacement therapy (HRT). But there is little research about the interaction between HRT and our other medications. We are at greater risk of kidney disease, restricted lung disorders, lung disease and heart disease. This is especially so for groups of older women with disabilities (Gill 1996).
Health care utilization for women with disabilities reveals a different pattern from those without disabilities. In a survey of 950 women in the United States, it was found that we are less likely to have pelvic exams than non-disabled women and doctors are completely lacking knowledge of our disabilities and there are no facilities for TTY (Gill 1996). We are less likely to have private health insurance. We are not visible in women’s health centres as patients or workers, we are not employed in the health services and we are not visible in the women’s health movement. (Women with Disabilities 2001),(Temby 1997). I have not even begun to address the women who are institutionalized who are also victims of abuse, violence and death (more appropriately termed murder) in care. There are still many, many women institutionalized, who should not be there and who are suffering some of the most extreme forms of abuse.
Position of Disabled Women in Australian Society
Disabled women consistently have a low socio economic status, we are the poorest of the poor. In Australia 50% of disabled women earn less than $200 per week and only 16% earn more than $400 per week. (Australian Bureau of Statistics 1999) (Women with Disabilities Australia 2000) (Women with Disabilities 2001).
I was extremely disappointed with the Commonwealth Rehabilitation Service statistics in the mid 1990s that suggested that only a third of those using the service were women and most of those who were closed in ‘independent living’ categories – usually a euphemism for living in the home, rather than getting paid work. The research I carried out in 1985 (Meekosha 1986) produced similar results, showing little has changed in terms of women’s access to rehabilitation services. Although disabled women might have problems with rehabilitation, it is often a means to a finding employment and obtaining information to advice about aids and appliances and so on. The figures for 1997 in the Federal Government’s Open Employment Program suggested that only 33 per cent of the participants were women and those numbers are continuing to decline. Only 16 per cent of all disabled women in Australian have been through secondary education (Frohmader 1998) (Women with Disabilities 2001).
Disabled women’s bodies are continually subject to surveillance. Women of small stature are still experiencing the pressure to have limb lengthening and deaf women are pressurised to have the cochlear implant. Our right to sexuality is under question. If we enter a relationship, it may lead to a loss of access to the Disability Support Pension and associated benefits. We know from the work in the Disability Discrimination Legal Centres that many women are denied custody of their children on the basis of their disability.
The figures on sexual abuse are just horrific. It is estimated that 90 per cent of women with intellectual impairments will be sexually assaulted and disabled women will be raped or sexually assaulted at least twice the rate of non disabled women (Sobsey 1988), (Sobsey 1994); (Disabled Women’s Network 1994) (Strahan 1997) Yet, at the same time, there are few, if any, accessible rape crises centres and women’s refuges. It is has also been suggested that the major experiences of sexual ‘intimacy’ that women with intellectual disabilities experiences that of rape (Sobsey and Doe 1991).
Prenatal Testing and Selective Abortion
The issue of prenatal testing and selective abortion is of great concern to disabled women. We are aware that it is increasingly common for women to have prenatal testing and then the pressure is extremely strong to have a selective abortion if there is a perceived ‘abnormality’. It is considered ‘natural’ to use prenatal testing and a selective abortion as a means of minimising disability. Disability is seen as incompatible with a life satisfaction .In the disabled women’s movement, we argue that it is simply not the case. To have a disability does not mean that you are continually unhappy, that your parents or partners are unhappy or your siblings are unhappy. We argue that you can lead a fulfilling life and an enjoyable lifestyle. But medicine justifies prenatal diagnosis and selective abortion on the grounds of the ‘costs of disability’. The cost to the disabled child, in terms of pain and suffering; the costs to the family and to the sibling/s. A non-disabled friend of mine was told that her existing daughter would have a lesser quality of life if she went ahead with her pregnancy without prenatal testing and had a disabled child.
Many disabled women argue against pervasive prenatal testing and selective abortion. Adrienne Asch argues that on both empirical and moral grounds endorsing prenatal diagnosis for societal reasons is dangerous. Her moral opposition is a conviction that life with disability is worthwhile and a belief that a just society must appreciate and nurture the lives of all women, their daughters and their sons. Empirically we know that only a fraction of total disability can be detected pre-natally and the rates of disability increase markedly with age. There is a very small cost saving in manual human resources to be achieved by the vigorous determination to test every pregnant women and abort every fetus found to exhibit impaired traits (Asch 1999).
There is no prenatal testing, as yet, for genes associated with musical genius or Olympic athletes! However parents with athletic or musical children may have an unexpected expense, family disruption, sibling rivalry and so on. The costs of having such children may well be high, but nobody would suggest they are too expensive for society and therefore society would be better off without them.
While I am aware of a great deal of community support for voluntary euthanasia and pressure groups to change criminal law in this area, I want to make the case that voluntary euthanasia is a complex and gendered issue affecting disabled women. Voluntary euthanasia needs to be looked at within the medical model of health, disability and illness. Whether it is called mercy killing, assisted suicide, assisted death, it is not simply a civil rights issue, or a self – determination issue or an issue of choice. Phillip Nitschke, from South Australia, has been the most prominent supporter of voluntary euthanasia in Australia. In the United States Jack Kevorkian, dubbed by the media as ‘Dr Death’, was jailed in 1999 for his role in assisting terminally ill and disabled people. Less well known is that Jack Kevorkian’s patients in the United States were mainly middle aged or older women with disabilities.
One woman with MS said she wanted to die because she felt useless (Hirsley and Thomas quoted in Gill op cit.). Another woman, a quadriplegic killed herself after losing her access to social security funding (Hewitt quoted in Gill op cit.) What do we know about Phillip Nitschke patients? Little is known apart from what we read in the media, but at the time the Commonwealth Government intervened in the Northern Territory legislation, we suspect that the majority in his ‘queue’, were actually women with disabilities.
So, what do we know about women who are disabled or ill and want to die? Many of these women are extremely distressed and despairing, they have had a long history of violence and or neglect and, in particular, and perhaps most importantly, they are isolated from family and community and isolated from essential resources and treatment.
In the latest and controversial Lars Von Trier film ‘Dancer in the Dark’ the rock singer Bjork plays the lead role, a blind immigrant woman living and working in the United States in the 1950s. In the finale, we witness the heroine being executed for murder. My reading of the film suggested that we see in the Bjork character, a disabled woman choosing her blindness over sightedness for her son. Furthermore, this choice results in her own death. The money she has saved for the operation for her son, also going blind, is stolen and in her attempt to recover the money she kills the thief. The execution process can be read as an example of a disabled woman using state sanctioned death as a form of assisted suicide. As a blind woman, she did not have the essential resources she needed to live – to pay a lawyer to defend her case, to pay for the operation for her son and to live a life without poverty.
So, it was no surprise to me that it was in the Northern Territory, a place that imprisons women and children for theft of a packet of biscuits, where there exists little support or palliative care for cancer patients and services for disabled people, that the Government was so eager to enact the right to die legislation. I am therefore asking you to reconsider these issues and I make this plea to a number of progressive politicians and community and women’s leaders in Australia. It is not so straightforward an issue of progressive human rights as it may at first appear.
Ian Cohen, an Upper House Greens MP in NSW, is putting forward his own pro-euthanasia Bill, based on the Northern Territory’s Rights of the Terminally Ill Act. These Bills are being introduced by Greens and the Democrats in all states in Australia. If there are laws permitting assisted suicide, perhaps they should be extended to all citizens who think they have goods reasons for ending their lives, not just disabled and chronically sick people.
It seems very strange to me that we are concerned -rightly- about the increase in youth suicide in our community, but far less concerned when columnists like Beatrice Faust argues in the Australian (Oct 5-6 1996) that “people whose lives are obscenely bad or likely to become so – such as victims (sic) of Multiple Sclerosis ” should rightly ask for assisted suicide. The majority of people with MS are women, and I, as one of those women, object to my life being described as “obscenely bad”. It is these recurring themes in the media telling me how bad my life is that cause me the greatest distress, not the disease it self.
Emergence of Disabled Feminist Groups on the Global Level
Since 1985, the last time the AWHN conference was held in Adelaide we have witnessed the emergence of disabled feminist groups on the global level. We are learning to speak to each other across states, territories, and international boundaries. The organisation I represent, Women With Disabilities Australia (WWDA) was at risk last year of losing funding under Jocelyn Newman’s, then the Minister for Family and Community Services, review of funding for peak bodies. Widespread support came from women in New York, Alberta, Canada; Uganda; Pakistan; Ukraine, and New Zealand, to name but a few places.
WWDA has gone from strength to strength, with little support from mainstream feminism and femocrats, but the strength of the women involved has carried the organisation forward. We have worked with women with disabilities who have suffered from violence and abuse, and before the Disability With Attitude Conference in February 2001, we held the first ever National Sterilization and Reproductive Health Forum. We are also working on issues like access to breast and cervical cancer screening; provision of attendant and personal care services; leadership and mentoring; telecommunications; and more.
The women at the first national forum started to talk about the impact of sterilization on their physical and emotional lives. Many felt a loss of identity; some who had been sterilized as young as twelve years of age, felt they had been neutered. A number had early onset menopause and osteoporosis. The main concern was to prevent sterilization as a mode of menstrual management and contraception. The women wanted to raise further issues of the need for compensation, for support services, and for doctor and health practitioner education.
Activism takes it toll and many disabled women are exhausted by trying to operate on many fronts, often in isolation. They are pushed to try to maintain contact with the women’s health movement and mainstream feminism, while supporting other disabled women in more extreme situations than their own – such as those who been forcibly sterilized.
Health Policy Models
The traditional health policy model (illustrated in the following diagram) that has developed over the years has seen some linkage between gender and health, with the result that many women’s health priorities have been identified. But disability is usually outside the frame and is isolated and contained within disability policies. It is rarely considered within gender or health policies. The health policies which look at the needs of disabled people rarely consider gender questions.
The second diagram demonstrates the conceptual re-think necessary for a more integrated policy model, where disability, health and gender come together and at the heart of the intersections, the complex reality of disabled women’s lives can be covered.
What Can Disability Teach the Women’s Health Movement?
Disability is a human rights issue in which health is a significant element but not the whole story. Clearly disability as a dimension of governmentality is not just about welfare and community services. As Sutherland’s remarks have crucially highlighted, disability is pivotal in deciding who has the right to exist and who does not have the right to exist in the 21st century. But disability is a complex story, my story is complex, most disabled women’s stories are complex. Disability is always gendered and intersects with race and ethnicity. At the Disability With Attitude Conference, we saw moves to organise the first Indigenous Disability Conference by Maori and Aboriginal activists. There is not an Aboriginal family in this country who has not been touched by disability; war as we know, is responsible for high levels of impairment, and the war of colonisation has been no different. Those in the immigrant and refugee communities are another invisible group of women with disabilities.
Where To Now?
We desperately need large scale epidemiological studies to be carried out in Australia. We have little or no data on the health experiences of disabled women. The only data we can draw on is that from the United States. We are simply not included in large scale epidemiological studies of women’s health and illness experience. We need to look at what constitutes wellness for disabled women and how this might be achieved. Some of us are getting to that middle age where issues around menopause, the interaction with our disability and HRT are of prime importance.
We particularly need to question the assumptions made about disability by health professionals and the information given to prospective parents. The question will no doubt arise on a woman who has a screening and comes up with a pre natal diagnosis of Downs Syndrome or Cystic Fibrosis (CF). What decisions should these women make? What about the freedom to choose? Disabled women would applaud legislation where women must be given comprehensive information about both the difficulties and the VALUE of having someone with a disability in the family; about how disability is part of the rich pattern of human diversity.
We need the women’s health movement to work alongside women’s disability groups and recognise our needs and issues, so I’d call at this conference and women’s health workers, especially, to communicate that it is acceptable to live with a disability, just as it is acceptable to live without one. We must communicate that a just society will support and appreciate all children with the inevitable variety of traits be they the gifted musicians or athletes or loving daughters or the children with impairments – or the fact that disabled people can be all these things.
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