Women With Disabilities: How Far Have WeCome?
A Paper by Joan Hume. Copyright 1990.
When America paraplegic Ellen Stohl posed nude for Playboy a couple of years ago, feminists and disability rights activists were outraged. And perplexed. On the one hand, exploitative publications such as Playboy had long been derided for perpetuating women’s enslavement to the cultural stereotype of sex object, while simultaneously – and paradoxically – promoting impossible ideals of female physical perfection. To appear nude in Playboy was for a thinking woman, an act of betrayal to her sex; for a woman with a disability, a double demeaning, betraying both her sex and the purists of the disability rights cause which had fought a bitter battle against prejudice based on appearances.
Yet ironically, Ellen Stohl’s gesture could be seen not merely as the violation of a taboo, but also as a symbol of the ultimate emancipation of women with disabilities: the ‘right’ to be perceived as a sex object and accordingly enshrined on that altar to male sexual fantasy – the Playboy – centrefold.
But is the achievement of that ‘right’ true progress for women with disabilities? Or is it the ultimate cop out, a capitulation to the enemy? What is the current agenda for women with disabilities? What are their major concerns? Are the stereotypes changing? Do they really want to be sex objects? Has the women’s movement helped or hindered the disability cause? These questions were explored recently with four articulate women: Helen Meekosha, Laurie Alsop, Terry Fletcher and Bronwyn Moye.
Helen Meekosha is a feminist, lecturer in Social Work at the University of NSW and has MS for nearly ten years. In a recent paper ‘Shut In, Shut Out, Shut Up’, presented at a national workshop in Perth on research priorities for service and support needs of younger physically disabled adults, Helen examined the nature of sexism in disability research and the politics of gender and disability. Her paper pointed out how the needs of women with disabilities had been ignored or trivialised. Policy makers and service providers had failed to recognise the endemic effects of sexism and the inequalities of relations between disabled and non-disabled women. They had also failed to support disabled women’s struggle for autonomy.
The paper presented some telling statistics:
- Women with disabilities are more likely to be unemployed than men with disabilities, earn substantially less, and are less likely to find a job post disability. 28.4% of women with disabilities compared with 49.3% of men with disabilities in labour force (ABS 1981); 15.8% unemployed compared with 10.4% for men (ABS 1981); 9.3% CES registrants had disabilities but only 23.3% were women (June 1987); women received only 27% of invalid pensions, 32.4% of rehabilitation allowances and 34.9% sheltered employment allowances (1985-86)
- Women with disabilities are less likely than non-disabled women to be married, are likely to marry later, are more likely to be divorced; they are more likely to be alone or be left alone than men with disabilities. A study of women with Multiple Sclerosis found that 71% of women were married before diagnosis, 33% after diagnosis. By contrast, the men with MS spoke highly of the role their wives played during and after diagnosis
- Women with disabilities are perceived more negatively than men both by themselves and others
- Women with disabilities have access to fewer socially sanctioned roles than women who are not disabled or men with disabilities. They are perceived to be inadequate to fulfil either the nurturant reproductive roles of wife or mother or economically productive roles considered appropriate for men.
Helen Meekosha believes that two of the critical issues facing women with disabilities are reproductive rights and institutionalisation. The former issue is fraught with major social and ethical implications, such as the right to reproduce, genetic counselling, the rights of newborn babies, sterilisation against one’s will and the effect of contraceptive technologies on women with disabilities.
Institutionalisation is a major issue for women because it crosses generations and becomes increasingly relevant with ageing. For someone like Helen with a degenerative condition, becoming and staying employed is very important. Although chronic fatigue necessitates frequent rest periods, Helen maintains a busy schedule as a half time university lecturer, a position which she would eventually like to make full time. People with MS however, face greater employment discrimination than those with more stable disabilities. As Helen was to discover some years ago, the Commonwealth Public Service, for example, will not permanently employ people with degenerative disabilities.
For Laurie Alsop, adviser to students with disabilities at the University of NSW and convenor of the Post Polio Network, her thinking about being a woman with a disability has radically altered over the years:
“After constant denting of your ego and personality from an early age (by non-disabled people), it is difficult to see oneself as an attractive and desirable person. But now I see having a disability as a woman can be a liberating thing. It liberates you from the feminine stereotype: mother, partner, spouse, homemaker. It is liberating because these expectations are simply not assumed of disabled women.”
A woman with a disability is therefore free to explore avenues of experience otherwise closed to non-disabled women who may be hampered by traditional female constraints such as family duties. In Laurie’s view, the combined effect of femaleness and disablement is spiralling. She has never been certain whether discrimination against her has been based on her being a woman or a member of a minority group. How supportive does she feel that the women’s movement has been of disability issues? Not much. To give you a typical example. In 1987, I ran a workshop on disability at a socialist feminist conference. Out of the 2000 or so women attending, seven turned up for the workshop and most of these were involved in the disability area anyway. The conference had many publications on display but none on women with disabilities or older women. Having some form of disability and ageing are two issues we all have to face. Yet the women’s movement seems to deny this reality.
Terry Fletcher, Chairperson of the NSW Disability Services Advisory Committee and who contracted polio in childhood, is also disillusioned with the attitude of the women’s movement towards disability issues. As a feminist, she had hoped for a better deal, greater empathy and understanding from a similarly oppressed group. So far, there has barely been token recognition.
Despite the feminist rhetoric of questioning the status quo, of repudiating the conventional female images of beauty and duty, at heart, there appears to be a deep ambivalence towards women with disabilities, a fundamental hypocrisy. It is because the very women who have spearheaded change are part of the cultural and economic elite: essentially white, middle class, educated and non-disabled? Women have been the traditional carers of elderly people, disabled children and adults. Some women activists may subconsciously regard these groups as symbolic of the chains that have bound them to the home.
According to Terry:
“The women’s movement has neglected women with disabilities; its simply not interested. They’ve not welcomed us as they have other disadvantaged groups or causes. I don’t think they’ve come to terms with us. We besmirch them. And their image. They don’t really want to acknowledge the less beautiful. They ignore elderly women as well. They haven’t done much for us at all. That’s why I haven’t become a fully-fledged card carrying member. I feel the women’s movement has betrayed us.”
Bronwyn Moye agrees that the women’s movement has let down women with disabilities. She asserts that this is because women with disabilities epitomise women’s powerlessness, the worst realities of discrimination, subjugation and worthlessness.
“We make them (women’s activists) face the painful truth that many of the gains they have made have been in superficial areas and won on the basis of male ideals rather than capitalising on female virtues.”
An issue that personalises this dilemma is friendships between non-disabled women and women with disabilities. Laurie Alsop queries how real is a friendship that excludes the other from the totality of shared interests. Why, for example, don’t women arrange blind dates or actively match-make relationships for their disabled friends? Are they being over-protective fearing the friends rejection, or have they internalised the negative expectations of society towards disability to the extent of denying their friend’s sexuality?
Terry Fletcher believes that the key to establishing successful relationships – with males or females – is for the woman to ‘play the game’, to play down her disability and establish her credentials as an ‘ordinary’ woman first.
“So many women with disabilities are alone (as distinct from men with disabilities) because they have been rejected by males who don’t regard them as worthy, attractive in their own right. Men have been brought up to believe that they are undesirable as partners. I think some men have been spoilt and pampered by mothers and sisters. They are looking for someone to continue the pampering. When they look at a woman with a disability she’s not seen as an attractive asset, let alone a practical one. She can’t enhance the male ego.”
In Terry’s view, women with disabilities feel that they are the ‘bottom of the pile’ when establishing relationships. This attitude is perpetuated in the media, the education system. If you do achieve anything you are regarded as remarkable. As an adolescent with a disability, Terry went through a very painful time:
“When others were going to the beach, I was going to the physio. I missed out on the opportunities for social interaction and never had a boy to take to school dances or parties because I never met any. I usually went with cousins. Once a friend lined me up with a partner for a school dance but she asked me to leave my crutches at home. I was devastated. But I was only sixteen. Of course, I left them at home. The boy was very nice but I never saw him again. I took my calliper off at eighteen because I was too sensitive to wear it. Men found me attractive as long as I didn’t look too disabled.”
To what extent have these attitudes changed in recent years? Very little it would appear. Terry recalls attending a colleagues party a few years ago. While she was talking to a male guest, the hostess asked him why he wasn’t dancing with Terry. He replied jokingly: “Do you expect me to dance with a cripple?” Comments Terry: “But he wasn’t really joking. I left the party”.
Bronwyn Moye is a previous deputy chair of the NSW Disability Council, currently chairing the NSW Special Education Coordinating Committee and member of the AQA Board. For her, employment is not such a pressing issue as she has two sons of school age that she and her husband are rearing. Bronwyn’s disability (quadriplegia since 1975 from a car accident) was further compounded four years ago when she had a stroke. Prior to the stroke Bronwyn worked as a counsellor with the Family Life Movement. Her double disability and family commitments have not prevented active participation in the disability movement.
The major concerns for women with disabilities are, in Bronwyn’s view, similar to those of non-disabled women: acceptance, validity, self-esteem, education, employment and job security, reproductive and contraceptive rights, and the freedom to make choices.
“Nothing has changed much in the past ten years. Still on the agenda for disabled women is the desire to be a valued person, first as an individual then as a woman. To be a fully-fledged person. A potential partner, lover, mother, wife, sister. But it’s important to differentiate between person and woman. In the past we’ve been seen as asexual. But some women with disabilities are rejecting the traditional roles in favour of an asexual life and are primarily interested in developing their personhood.”
Another important issue for Bronwyn is the design of mobility equipment like wheelchairs, callipers and specially designed shoes. Although there has been considerable innovation in the design of sports chairs in recent years, a predominantly male market, aesthetically pleasing or attractively designed equipment specifically targeting women, remains a pipe dream. Except for minor cosmetic changes, basic wheelchair design has changed little in the past century. A female wheelchair user is condemned to limited choice, ugly cumbersome design and ergonomic discomfort. Those metal trappings help to define one’s image and isolate the user from the non-user.
Apart from the non-gender based issues like access, transport and accommodation, Bronwyn believes that unrealistic expectations of women with disabilities still prevail, particularly in comparison with men. A female friend in full-time employment, for example, has had difficulty in accessing the full range of home care services because it was deemed that she, as a woman, should be capable of performing certain household tasks without assistance. Women with disabilities also have greater difficulty in accessing rehabilitation services, in having their opinions accepted as readily or indeed feelings such as anger.
“It’s very hard to change stereotypes. But there have been some gains. There is less obvious discrimination. People are less surprised to see you around but to be seen as ‘ordinary’ is still difficult. They have that sense of wonder when you do something normal. And it’s still more acceptable for a disabled man to marry a non-disabled woman than for a normal man to marry a disabled woman.”
Coming to terms with the ‘image’ of disability has been as much of a struggle for Bronwyn as has been dealing with the practical aspects of new physical limitations.
“In 1975 when I was in hospital, there was a TV advertisement for Sanyo. A very attractive woman sang “That’s Life”. Her image was vibrant, very erotic. If that was supposed to be me, I missed out on all points. I would never be that way again. Ironically I fell back on all the stereotypes of women with disabilities. Although I still felt very much of a sexual being I knew that others didn’t see me that way anymore. But my husband, my lover did. And I still had a role to play as a woman but I was no longer able to fit into the traditional role.”
Before her accident, Bronwyn had perceived being a housewife and mother as transitory, prior to returning to the workforce. She claims to have been an ‘appalling housewife – the house a mess’. The sudden onset of disability brought a rapid change of role identification. Now it was important to her to be tidy, the perfect housewife and mother, a battle royal ensuing with successive housekeepers who attempted to usurp her position even in the affection of her children.
“I really fought them over what happened in the house, what happened to the kids. I was lucky in having the satisfaction and security of a happy home life. My sex life after I became disabled was more important than before. I was more sexually aggressive – it was a way of asserting my femaleness, my attractiveness, my wholeness. Being in a satisfactory relationship was a vital step in getting back into the real world again.”
The friendship of other women with disabilities has been most valuable to Bronwyn for their greater depth of understanding and empathy and with whom she could ‘unload the rubbish’. But the greatest sustaining force in her life has been her husband and her children. They bring her down to earth, both confront and comfort her. For Terry as well, her family has been a wonderful source of love and encouragement, an ‘anchor’ throughout troubled periods of her life. A current happy, stable relationship is of great support to her.
Looking to the future, all four women see that improvement in the lives of disabilities will become a reality through mutual support, recognition of the validity of their individual experiences and its documentation. Action by women themselves in the form of conferences and sharing experiences is a vital key to greater respect and autonomy.
And what of Ellen Stohl? How relevant is her ‘achievement’ to the 1990’s and how significant to the real concerns of women with disabilities? Bronwyn Moye has mixed feelings about Ellen’s place in history. For her, the whole episode remains a confusion of distastefulness, kinky voyeurism (on the part of Playboy readers) and qualified support for a woman exercising a freedom to express her sexuality in a manner previously unthinkable. In that sense, Ellen Stohl has achieved a kind of equality with non-disabled women. But most women, disabled or not, do not wish to pose nude for Playboy let alone be demeaned to the level of sex object. But Terry Fletcher has a more positive assessment:
“I believe that what Ellen Stohl did was extremely important for women with disabilities. It was an ice-breaker. It made a statement about us which had never been made before. We had always been perceived as lacking in any sexual characteristics. She got world wide publicity as a sexual being AND having a disability. I support what she did. My only concern is that the vehicle she used is so dubious. I’d have been happier if she’d used the mainstream media to make the same point. But we have to build on this now by ensuring that the issues she raised are reinforced by public debate.”
Perhaps Ellen Stohl’s most interesting, if unintentional contribution to the struggle of women with disabilities for acceptance on their own terms, is to dramatise the contrasting terms of the women’s movement and the disability movement. Whereas the one, commencing from a perspective of ‘normality’, distains the traditional roles and images of women, the other whose perspective is difference and stigma, yearns to embrace ordinariness, including these stereotypical roles and images. This difference in perspective may explain why women’s activists have had such difficulty in adopting the cause of women with disabilities. Defining the differences and exploring their implications could be a way forward to a more mature, open dialogue between the two groups and a more productive relationship.