Gender and Disability
A paper presented by Kali Wilde for Women With Disabilities Australia (WWDA) to the Court Support Network in 1997. Copyright Women With Disabilities Australia (WWDA) 1997.
Australian Bureau of Statistics figures show that 18 per cent of the population identify as having a disability (1). Women and girls with disabilities comprise approximately half this figure, which means that there are nearly a million Australian women and girls with disabilities. Disability can be physical, sensory, psychiatric or intellectual. Disability cuts across the boundaries of gender, race, culture, class, sexuality and age. And common beliefs about disability are enmeshed with common beliefs about the above groups. There is immense diversity in families where a member has a disability.
Many women and children with disabilities will come into contact with the Family Court. It is essential to understand that attitudes and beliefs held about people with disabilities are often more significant in terms of our life experiences, than the disability itself. Furthermore, it is imperative that disability is recognised as being an issue of poverty.
People with disabilities who come into contact with the Family Court, have the same issues as non disabled people; namely relationship breakdown, violence, custody, access, maintenance and property settlement issues. But often people with disabilities, and especially women, find their capacity to be ‘good parents’, in the spotlight at court, in situations and cases where the parenting skills of non disabled people would be considered irrelevant.
In the preparation of this paper I could find very little information around people with disabilities and the Family Court. So I have used my network of women with disabilities to get some idea of their experiences in the system. I will recount this anecdotal information throughout the paper. I t is not supposed to be representative, but will show some of the experiences that women with disabilities have.
There are many common beliefs around disability and families. These encompass:
- Reproductive freedom
People with intellectual or psychiatric disabilities are often considered ‘promiscuous’ or ‘over sexed’. Conversely, people with physical disabilities are generally perceived as being ‘sexless’. One example illustrating this belief are the symbols on public toilet doors. Women, Men, Disabled can be read as female, male, neuter. This gendering of language permeates the consciousness of everyone. Beliefs are not only maintained through language, but structurally, though stereotypes and attitudes.
Traditionally, women’s role has narrowly been considered that of homemaker, childbearer, nurturer and rearer. However, the role of women with a disability is less clear, and even more constrained. For heterosexual women, the act of entering into motherhood is generally seen as a badge of normalcy. But for women with disabilities (as with lesbians), it is generally perceived as an act of deviance. Women with disabilities are often unable to fulfil the cultural expectations of ‘good’ mother and ‘good’ wife or partner, with all that that entails.
A common belief about women with disabilities is that we are physically unable to be mothers. Questions such as “How did you get pregnant?”, or “Did you adopt?” are common, and may elicit the response of “No, we fucked for them.” or “Haven’t you heard of sex?”.
If women with disabilities do manage to have children, it is assumed that we cannot make good mothers. Disability is strongly linked with dependency in the mind of our society. Add to this the stereotype already associated with the female role of dependency, and women with disabilities end up being seen as cared for, rather than the carers we so often are.
Because of the many myths around parenting with a disability, women with disabilities often encounter negative attitudes if we profess a desire to, or do fall pregnant. (2 and 3). A survey conducted by Westbrook and Chinnery compared the childbearing and childrearing experiences of women with physical disabilities and non disabled women. They discovered that women with disabilities were significantly more likely to encounter negative and ambivalent reactions to their pregnancy than non disabled women. Consider; only 14 per cent of women with disabilities received positive reactions on announcing their pregnancy in comparison to the 79 per cent of non disabled women who did so (4). Not only this, but 20 per cent of women with disabilities reported being advised by their doctors to have an abortion, but none of the non disabled women were so advised (5).
Another common belief is that any child who has a parent with a disability must suffer severe social and psychological damage. The following are all commonly speculated to be adversely affected by parental disability. Personality, adjustment, sex-role development, body image, physical health patterns, athletic ability, interpersonal relationships, and the parent-child relationship. Yet the few studies to date do not support these dire assumptions. These are opinions, not facts, for they are not backed up with scientific data (6). Studies using comparison groups and objective measures of children’s adjustment fail to document negative effects on children as a result of being raised by a parent with a disability” (7 and 8).
Some people even believe it is a form of child abuse for women with disabilities to have children, considering the discrimination they will surely experience, and their children witness. This belief makes women with disabilities responsible for other people’s bigoted attitudes and discriminatory behaviour. I t has frightening eugenic overtones, implying only non disabled, white, middle class, heterosexual women should have children. Beliefs lead to practice. For example, common beliefs about women with disabilities and their sexuality, combined with their general devaluing by society, have led to the frequent sterilisation of women with various disabilities, without their consent or even their know ledge. This is particularly common for women with intellectual disabilities (9 and10). For girls and women with intellectual disability, this has been seen as an ‘easy’, and pragmatic solution to perceived ‘problems’. It has been rationalised that sterilisation is in a woman’s best interests as she would not have to worry about learning about sex, contraception, menstrual management, pregnancy, or the ‘risk’ of bearing a child with a disability.
Another common rationalisation is that sterilising a woman with an intellectual disability will protect her from pregnancy arising from rape. Shockingly, it has even been argued that sterilisation protects a woman from rape (11 and 12). In reality, this actually protects the perpetrator from discovery and prosecution. Women’s bodies thus become a resource issue – allowing fundamental rights such as information about ones own body or protective behaviour to be subsumed. Many services have made the conscious decision to allocate resources in a way that they retain control, and alter girls bodies, rather than educate girls and women about their bodies. All this is done, often in the sincere belief that it is in the best interests of the woman. But in fact such decisions should be viewed in the context of the least restrictive and least invasive alternative for the woman herself. Paradoxically, many women with physical and sensory disabilities have been non consensually sterilised despite common perceptions they are asexual and ‘sexless’.
Over the past decade, people with disabilities, the Family Court and others have taken this issue on, and made significant changes to the legal structure, advice and education. The medical profession has been powerful in maintaining the silence around consent issues, so it is really positive to see the Family Court offering education resources to doctors on this very issue. Common beliefs, combined with a general lack of knowledge mean that young women with disabilities are less likely than their non disabled peers to receive basic sex education, let alone adequate sex education covering disability, sexuality and reproductive issues. Information on management of menstruation, contraception, conception, childbearing and childrearing with specific reference to disability is virtually non existent. The Disability and Sexuality project at Family Planning routinely receives requests from workers at institutions asking “Can you come and give a talk to our girls, telling them not to have sex with men or each other?.”
Adults with disabilities also face problems accessing information. For example, services which tape books for people who are blind or have visual impairments have been known to censor or refuse to tape books which cover issues of sexuality. And people with disabilities consistently report that medical practitioners frequently deny them adequate, factual and non judgmental information. The manner in which the sexual activity of women with disabilities is actively curtailed can vary. It was reported to me by a woman with a physical disability that she grew up in an institution, and underwent a hip operation at the age of five. As a teenager, she discovered penetrative sex was impossible. A doctor, upon examining her, discovered she had been infibulated. This woman realised the infibulation must have been performed when she had had her hip operation. She confronted that surgeon. His response was “I knew you wouldn’t be needing that”.
Matthews, Moye, and Westbrook and Chinnery all report women with disabilities are frequently pressured to have abortions (13, 14 and 15). Alternatively, women report their male partners have been pressured to have a vasectomy.
Access to Services
People with disabilities attempting to adopt, have frequently been refused on the basis of their disability. A famous case is that of George Hohmann. On visiting adoption agencies in the late 1940’s, he was told that he could not be a satisfactory father because he could not play ball with a child; and that a male child could not adequately identify with him as a father, since he had a spinal injury (16). And this is still happening here in Australia in 1997.
A woman who uses a wheelchair was refused, the adoption agency claiming any child allocated to her would never learn to walk without the role model of a mother who walked. Another woman with Thalidomide limb damage was refused on the grounds her baby would never learn to eat ‘normally’. The ludicrousness, narrow mindedness and cruelty of such comments is astounding. The availability of aids and appliances specifically designed for use by women with physical disabilities to independently manage during pregnancy and childrearing, is an important part of motherhood, yet can often be either unavailable or prohibitively expensive. There is a need for research in this area and new aids and appliances need to be developed and made freely available.
Some women with disabilities may need assistance from home help and personal care services such as Home Care, especially during pregnancy and the early years of their child’s life. Other women who have a child or partner with severe disabilities may also require such support. Stereotypes of what a family is, and the roles that family members should take, can affect whether or not someone receives a service. For example, in NSW, women with disabilities with children aged five and over are often denied home help and personal care assistance, the service stating that their children are old enough to vacuum, mop, clean, cook, shop for the whole family. Shockingly, these services sometimes even expect these children to help their mother with intimate personal care.
If women with physical disabilities are unable to get the practical support necessary, they are unable to go ahead and become pregnant. Women who have children who then acquire a disability are often placed in the terrible quandary of being unable to manage without the support of their children or ageing parents (who themselves may need support), and unable to access support services because they do have children or ageing parents.
It seems if you have a disability, services consider the ‘family’ will always be there for you, even if they can’t, won’t or are abusive. Interestingly, a survey comparing the childrearing experiences of women with physical disabilities and non disabled women found that parents of women with disabilities had less involvement with their grandchildren, than did the parents of the non disabled women. ‘Whether this was due to a continuation of relatives disapproval regarding the pregnancy or the mother not wanting to accept help because it might imply that she was inadequate’ was not clear in this study. (16).
People with disabilities have been fighting for many years for support services which give them autonomy, and maximises the control they hold over their lives. It is the lack of such services that creates dependence and gravely restricts life choices. So, if a woman with a disability is strong enough to go against societal attitudes and has children; or a woman with children acquires a disability, what happens to these women and their children at the demise of the woman’s relationship? The acquisition of a disability seems to be a contributing factor to the demise of relationships. Canadian national statistics show when men become disabled, 50 per cent of marriages break up, but for women who become disabled that figure is 99 per cent. And after disability, the majority of young men marry, but not so young women (17). These figures suggest women with disabilities may be over- represented in the Family Court system in comparison to non disabled women and men with disabilities. So, what are the experiences of women with disabilities in the Family Court?
Traditional notions of the ‘family’ can affect what happens in court. How judges see ‘family’ does affect how women with disabilities are treated. It seems stereotypes and common beliefs about women with disabilities are legitimised and used against them, often without people even realising they are doing this, because these beliefs are so deeply embedded in cultural belief and practice. The beliefs which inform judges and others about people with disabilities are akin to the false beliefs held about women, Aboriginal people, lesbians etc.
Women with disabilities access to justice is often impeded by the failure of the courts to recognise their capabilities. Women with a broad range of disabilities have found themselves faced with threats to custody rights. It is not uncommon for children to be taken from parents with disabilities, who often can cope, and certainly could cope were adequate support services provided. And the foster care to which these children are sent is far more expensive than support services to the family would be.( 18). Disability is invariably seen as the significant and defining characteristic, when in reality it may play an unimportant role in the equation. Most children strike problems at some time, whoever their parents are. Greer describes this phenomenon as parental disability becoming the ‘hook’ on which people ‘hang’ any problem a child may have (19). Blumberg and Geth write that, as long as women with disabilities are seen as less than whole people in a medical model, their anatomy will needlessly be the focus of their identity (20 and 21).
Negative community attitudes to mothers with disabilities are ‘an additional handicap’, undermining the mother’s confidence, leading to feelings of guilt, inadequacy and attempts to compensate by being ‘supermum’. Many women with disabilities, well aware of the critical, judgmental and ill- informed scrutiny they undergo as mothers, fear they will be seen as unfit mothers by the courts on the basis of their disability and the breakdown of their relationship. This fear can discourage mothers with disabilities from separating and obtaining the legal advice and assistance they need for quite some time.
These fears do have some basis. There are reports in the literature of children who have been removed from the custody of a mother with a disability. One famous example in the literature is of Tiffany Callo, an American woman with cerebral palsy whose children were forcibly taken from her care by the Californian Department of Social Services. Callo was unable to regain custody of her children (22).
As 1 mentioned at the beginning of this paper, 1 used my network to get some idea of the experiences of mothers with disabilities who had sought custody of their child after the break up of the relationship with the father. Here is some of the information which was told to me:
‘Ida Marie Stephens’ lost custody directly on the basis of her disability. She acquired a disability as a result of a stroke some years after her children were born.
‘Keiko Tanaka’, a bisexual woman, lost had custody ‘indirectly’ because she had been unable to access adequate practical support systems. (Her ex partner had helped her with personal care. At the demise of her relationship, Homecare refused her service on the basis of her sexuality.)
‘Heidi Schmidt’ used a personal care service. Although she would have dearly loved to have the custody of her children, she did not apply for custody as she had internalised societal messages that women who require personal care are “dependent” and therefore are unable adequately to deal with dependents of their own.
‘Djarrah Browne’s’ own mother went for custody of her child (and was awarded it). Her mother believed women with disabilities should not parent. This woman thus lost her child and became estranged from her mother. Anecdotal evidence shows this last scenario is extremely common in Australia.
By contrast, women 1 spoke to had come to the decision that their child had ultimately benefited from the challenge of growing up with a parent with a disability. They believed that their own experience assisted children to learn to be responsible, and accepting of difference. Some women believed that the experience of living with a family member with a disability had forced the family to develop effective lines of communication, thus drawing together family members.
1n America in 1979, the Supreme Court of California overturned a decision of the lower court which had granted custody to a non disabled mother because of the father’s spinal cord injury. Justice Mosk wrote ‘We are called upon to resolve an apparent conflict between two public policies: the requirement that a custody award serve the best interests of the child and the moral and legal obligation of the society to respect the civil rights of its physically handicapped members, including their right not to be deprived of their children because of their disability. Of the present day capabilities of the physically handicapped, these policies can both be accommodated. The trial court herein failed to make such an appraisal, and instead premised its ruling on outdated stereotypes of both the parental role and the ability of the handicapped to fill that role. Such stereotypes have no place in our law.” (23)
The Australian Law Reform Commission, in it’s report ‘Equality before the Law’ concluded that women with disabilities, along with Aboriginal women, women from Non English Speaking Backgrounds and women in rural/remote areas, were particularly at risk of structural and personal discrimination and therefore could be regarded as disadvantaged. The disadvantages relate firstly to societal attitudes and structures and secondly biases within the formal justice system, both its institutions and practices (24). And it must be remembered that many women with disabilities also are Aboriginal, may come from Non English Speaking Backgrounds, live in rural/remote areas, and may be lesbian.
Attitudes are one thing, but even getting into court can be difficult. Many women recounted their stories of trying to access outdated and inaccessible court buildings. One woman discussed some of the problems she faced going to court. She uses a scooter for mobility, so relies on a specialised taxi service with adapted taxis. This service is notoriously unreliable. Taxies can be up to three hours late, even if the trip is booked days in advance. As usual, the taxi was late, so she reached court feeling rushed and flustered. The court she appeared in was not physically accessible, so she had to organise someone to carry her up the stairs, lie her on a dirty floor, drag her scooter in with assistance from passers-by, and place her back on it, now rather dishevelled and grubby. As none of the toilets were wheelchair accessible, this woman, although not incontinent, was forced to wear incontinence pads. Stressed out by her impending court appearance she developed stress-related diarrhoea, but was unable to change the incontinence pads all day. She had to appear in court, soiled, and very uncomfortable. It was in these physically and emotionally stressful circumstances that she had to fight for the custody of her children.
Access encompasses more than just physical access. Women with intellectual, psychiatric and sensory disabilities may all experience difficulties in the Family Court I will present just a few examples. The stress of appearing in court can exacerbate difficulties a woman may have in communicating her story, e.g., women with intellectual disabilities and women with speech impediments or problems in expressive language. Long waiting times for court appearances may make it unduly difficult for women with intellectual disabilities to give clear evidence and thus be considered credible witnesses. Women with poor literacy skills do not have the benefit of refreshing their memory by reference to written statements. Women with intellectual disabilities or women with disabilities affecting communication may need additional time with lawyers to prepare their case, and to fully and effectively participate in court proceedings.
Education of judges, lawyers, other court staff, police and family practitioners. – perhaps similar to the education that was provided regarding sexual stereotypes. You are the experts on changing the attitudes and practice of the courts – Women With Disabilities Australia is willing and skilled to provide expertise.
Education on how to use the Family Court and information about Family Law should be made available for people with disabilities. This information should be available in a range of accessible formats such as audiotape, videotape, braille, be in simple clear language etc. It should be distributed through appropriate networks (including disability networks), and be available in physically accessible venues.
Removing barriers to court buildings and court process. Barriers can include physical barriers to court buildings. We are pleased to note that the Family Court has started addressing this issue. This work needs to be complemented by creating accessible court processes so as to include people with the full range of disabilities.
(1) Australian Bureau of Statistics (1993) Disability, Ageing and Carers, Australia. Catalogue No 4430.0 Australian Government Publishing Service, Canberra ACT.
(2) Kocher, M. (1994) ‘Mothers with Disabilities’, Sexuality and Disability ,12:(pI27-133).
(3) Morris, j. (1989) Able Lives: Women’s Experience of Paralysis, The Women’s Press, London.
(4) Westbrook, M.T. and Chinnery, D. (1995) ‘The Effect of Physical Disability on Women’s Childbearing and Early Childrearing Experiences’, Australian I Disability Review ,9:(3), (pI2).
(5) ibid (pl0).
(6) Buck, F.M. (1993) ‘Parenting by Fathers with Physical Disabilities,’ Reproductive Issues for Persons with Physical Disabilities, Haseltine, F.P, Cole,S.S., Gray, D.B. Paul Brooks Publishing Co. Baltimore Maryland. (p163 and 164).
(7) Hohmann, G.W. (1981) ‘Being a disabled Father’, Sexuality and Physical Disability: Personal Perspectives, Bullard, D.J, .Knight, S.E., CN Mosby Co, St Louis, Missouri.
(8) Buck, F.M. (1993) ‘Parenting by Fathers with Physical Disabilities,’ Reproductive Issues for Persons with Physical Disabilities, Haseltine, F.P, Cole,S.S., Gray, D.B. Paul Brooks Publishing Co. Baltimore Maryland. (pI78).
(9) Finger,A. (1985) ‘Claiming All of Our Bodies: Reproductive Rights and Disability’, With the Power of Each Breath: A Disabled Womans Anthology, Browne,S.E.. Connors,D. and Stear ,N. (eds.), Cleis Press San Francisco.
(10) On the Record. The 1990 STAR Conference on Sterilisation. My Body, My Mind, My Choice, Strahan, F., Brudenell, L (eds.), Melbourne.
(12) Blackwood, J. (1991) ‘Sterilisation of the Intellectually Disabled: The Need for Legislative Reform’, Australian Journal of Family Law., 5, (2), (p 138-170). as reported in Newnham, H. ‘The Sterilisation of Intellectually Disabled Minors’, Australian Disability Review 1-96.
(13) Matthews, G.F. (1983) Voices from the Shadows: Women with Disabilities Speak Out, The Women’s Press, Toronto.
(14) ‘Bronwyn Moye’, (1989) I Always Wanted to be a Tap Dancer. Women with Disabilities. Lawrence, A. (ed), New South Wales Womens Advisory Council NSW (p72).
(15) Westbrook, M.T. and Chinnery, D. (1995) ‘The Effect of Physical Disability on Women’s Childbearing and Early Childrearing Experiences’, Australian Disability Review, 9 (3) (p3and9).
(16) Hohmann, G.W. (1981) ‘Being a disabled Father’, Sexuality and Physical Disability: Personal Perspectives, Bullard, D.J, .Knight, S.E., CN Mosby Co, St Louis, Missouri. (p76).
(17) Matthews, GF. (1983) Voices from the Shadows Women with Disabilities Speak Out, The Women’s Press, Toronto. (p87).
(18) Anne Finger (p124)
(19 ) Greer, B.G. (1985) ‘Children of Physically Disabled Parents: Some Thoughts, Facts and Hypotheses’, Children of Handicapped Parents: Research and Clinical Perspectives, Thurman, S.K (ed.), Academic Press, New York.
(20) Blumberg, L. (1993) ‘The personal is political-Medical Attitudes Towards Disability’. Health/PAC Bulletin Summer (p35-37).
(21) Geth L. (1992) ‘Attitudes Towards People With Disabilities’ Medical journal of Australia Vol 157: 7/21: (p725-726).
(22) Saxton, M. (1994) Women and Disabilities: Reproduction and Motherhood’. Sexuality and Disability 12:(p.111-115), as reported in Westbrook, MT and Chinnery, D. (1995) ‘The Effect of Physical Disability on Women’s Childbearing and Early Childrearing Experiences’, Australian Disability Review, 9 (3) (p3and9).
(23) Buck, F.M. (1993) ‘Parenting by Fathers with Physical Disabilities,’ Reproductive Issues for Persons with Physical Disabilities, Haseltine, F.P, Cole,S.S., Gray, D.B. Paul Brooks Publishing Co. Baltimore Maryland. (p165)
(24) Australian Law Reform Commission (1994) Equality before the Law: Justice for Women Report No 69, Part 1.