‘Going Inclusive: Access to Health Care for Women with Disabilities’
Written by Keran Howe and Carolyn Frohmader. This paper was presented by Keran Howe for Women With Disabilities Australia (WWDA) to the 4th Australian Women’s Health Conference, held in Adelaide, February 2001. Copyright WWDA 2001.
1. About Women With Disabilities Australia (WWDA)
I would like to start by telling you something of the organisation I represent here today. Women with Disabilities Australia (WWDA) is the peak organisation for women with all types of disabilities in Australia. It is run by women with disabilities, for women with disabilities and operates on the principle that women who have physical, sensory or intellectual disabilities, or mental health problem are denied opportunities and excluded by the barriers that society creates. These barriers include lack of responsive or accessible services, inaccessible transport, violence, inflexible work arrangements and lack of access to education. It is these barriers that are the focus for reform.
WWDA is the only disability organisation in Australia that has a focus on gender. We have a very minimal infrastructure and we have just emerged from a major battle to retain funding. We are very keen to work with women’s health organisations to address health issues for women with disabilities. WWDA has developed a range of publications and resource materials on women with disabilities and operates a comprehensive web site: www.wwda.org.au
We conduct research and pilot projects and advocate on behalf of women with disabilities at a national level.
2. Defining Disability
To talk about disability we must first define it. This leads us into the difficult terrain that requires some consideration of the social and political context in which people with disabilities have long resided. Like gender and race, the concept of disability is a social construct used to define who are ‘other’ or different from the those who are the normal and adequate citizens of the Western world. Authors of these social constructs have presented their case as orthodox, scientific and objective, whilst their descriptions of people with disabilities are prejudicial and emotive.
Della Perry and Ruth Keszia Whiteside note that “common descriptors for the diverse groups called ‘feeble-minded’ and for women reveal a shared otherness, and include concerns about traits and behaviours like: passivity, weakness, lack of moral, mental, and physical control, incompetence, emotionalism, hyper-sensitivity or insensitivity, unassertiveness or too much assertiveness, laziness, greediness, craftiness, trickiness, calculating and deceitful behaviours, impressionability, ineducability, temperamentalism, immorality, amorality, andhellip;etc. etc. etc.” They further noted that “although it was also believed that males could suffer from hysteria, these were men considered to have ‘somewhat abnormal and feminine mental organizations'” (Perry and Kezia Whiteside, 1995).
These descriptions demonstrate how emotive and judgemental language, paraded as scientific classification, can be used to marginalise and demean particular groups (in this instance women and people with an intellectual disability) whilst elevating others (in this case men). In considering any definitions of disability then, we must be conscious of a double edged sword. There is a long and continuing history of oppression that has resulted from such classification. Practitioners and women as consumers of services, who are aware of this oppression may be reluctant to classify themselves or the users of their service as having a disability. However if we don’t collect statistics on disability and to define disability in research, we render a group already severely disadvantaged as invisible. We need to be aware also that when we talk about women with disabilities we aren’t talking about a homogenous group. We are as diverse as any group of women. We come from different geographies, different ethnic groups and have different beliefs values and preferences including sexual preferences.
3. The status of women with disabilities in Australia
When we talk about women with disabilities being one of the most disadvantaged groups in Australia what do we mean and how do we know this is so.
- There are 3.6 million people in Australia with a disability, making up 19% of the total population. The proportion of males and females with a disability is similar although it varies across age groups.
- There are 1.8 million women with disabilities in Australia. There are more women with disabilities in the older age groups, most notably those 79 years onwards.
- 616,000 women have a profound or severe core activity restriction. Among older people with disabilities, the rates of severe and profound disability are markedly greater for women than for men.
- Over 57% of women with disabilities living in households need assistance to move around or go out, shower or dress, prepare meals, do housework, undertake property maintenance or paperwork, or communicate with others.
- Women with disabilities are less likely to be in paid work than other women or men with disabilities. Men with disabilities are almost twice as likely to have jobs than women with disabilities. Despite women’s employment disadvantage, in 1997-98, 67% of people with disabilities assisted by open employment services were men. The percentage of women with disabilities being assisted by these services continues to decline. (The Annual Census of Commonwealth Government)
- Women with disabilities are less likely than men with disabilities to receive vocational rehabilitation or entry to labour market programs. Commonwealth Rehabilitation Services statistics for 1994/5 indicate only 35% of referred clients were female with women more likely to be rehabilitated to independent living (45%) than vocational goals (36%).
- Women with disabilities earn less than their male counterparts. 51% of women with a disability earn less than $200 per week compared to 36% of men with a disability. Only 16% of women with a disability earn over $400 per week, compared to 33% of men with a disability.
- Women with disabilities are less likely than their male counterparts to receive a senior secondary and/or tertiary education. Only 16% of all women with disabilities are likely to have any secondary education compared to 28% of men with disabilities.
- Women with disabilities are substantially over-represented in public housing, comprising over 40% of all persons in Australia aged 15-64 in this form of tenure. Women with disabilities are less likely to own their own houses than their male counterparts.
- Women with disabilities pay the highest level of their gross income on housing, yet are in the lowest income earning bracket. Some women with disabilities pay almost 50 per cent of their gross income on housing and housing related costs.
- Women with disabilities are more likely to be institutionalised than their male counterparts.
3.5. Health Spending
- Women with disabilities spend more of their income on medical care and health related expenses than men with disabilities.
3.6. Disability Services
- Women with disabilities have a consistently higher level of unmet need but are less likely to receive appropriate services than men with equivalent needs. 60% of recipients of disability support services funded under the Commonwealth/State Disability Agreement are men with disabilities.
- Men, particularly men without disabilities, are also most likely to manage disability services and disability advocacy organisations.
- Regardless of age, race, ethnicity, sexual orientation or class, women with disabilities are assaulted, raped and abused at a rate of at least two and a half times greater than non-disabled women.
- Women with disabilities are often forced to live in situations in which they are vulnerable to violence. They are more likely to experience violence at work than other women or men with disabilities.
- Access to telecommunications is a major area of inequity for women with disabilities in Australia. A national survey in 1999 found that 84% of women with disabilities are restricted in their access to telecommunications. Restrictions included affordability; poor equipment design, lack of training; lack of information; and discrimination. Given the importance of the telephone as a form of communication for many women this lack of access is critical in considering the social isolation of women with disabilities.
4. Health Issues
The influence of socio-economic status as a major determinant of health has been well documented (Abercrombie et al 1984, Western 1983, Baum 1987, Daniels et al 2000, Cornwall 1991, AIHW 2000). Clearly women with disabilities in Australia are one of the most socially disadvantaged groups in Australian society and even without adequate health research it can be predicted that their socio-economic status in society will have significant impact on their health. There is little research on the health needs of women with disabilities in Australia. What we do know is that women with disabilities experience difficulty accessing health information and services, particularly in relation to issues such as: managing menstruation, contraception, exploitative relationships, violence, sexually transmitted diseases, sexual assault, menopause, late onset incontinence, osteoporosis, sexuality, reproductive health, self-management, fatigue, increased dependency, and parenting (Temby 1996, Cooper and Temby 1995, WWDA 1998).
4.1. Health Promotion and Screening
Women with disabilities have very limited access to breast and cervical screening programs and services. Lack of information about the importance of screening may prevent women from accessing screening programs. A study of women with physical disabilities in Australia by Di Temby for the Victorian Women with Disabilities Network found health providers tend to focus on the woman’s disabilities, rather than offering health promotion information and screening.
4.2. Breast Cancer
Breast cancer is the most common cancer for females in Australia, and is the leading cause of death from cancer in females. The risk of developing and dying from breast cancer increases with age and this risk is highest for women aged over 70 years. It is likely that women with disabilities face an increased risk of breast cancer (Strauss, Cable and Shavelle, 1996). This may be for a variety of reasons, including: late childbearing or nulliparity. Despite this women with disabilities in Australia are not targeted adequately by community organisations for education and outreach. Breastscreen Australia has attempted to address some of the access issues in policy and accreditation requirements. Despite this there is no data published in their annual reports on uptake rates of breast screening for women with disabilities. A number of writers maintain women with disabilities are amongst the most under-screened groups. (Temby 1997, Frohmader 1998). Data from the National Longitudinal Study on women’s health looked at women over 70-75 years and found 41% of women with core activity restriction in Australia have never had a mammogram.
4.3. Cervical Cancer
Evidence from women with disabilities suggests that they are unable to participate in cervical screening programs for a number of reasons including:
- Inaccessible venues;
- Lack of transport, inaccessible transport and limited income to spend on transport;
- Lack of attendant care support;
- Lack of information, including lack of information provided in alternative formats;
- Inaccessible examination tables; lack of appropriate equipment (such as hoists and ramps);
- The tendency of health service providers to focus on the woman’s disability rather than promote wellness;
- The assumption that women with disabilities are ‘asexual’ and therefore do not need screening.
Whereas able bodied women experience problems in being treated as a sexual object, women with disabilities experience the exact opposite – being treated as an asexual object. It has commonly been assumed that women with disabilities are either incapable of sexual function or just shouldn’t want it. This is true of society in general as well as of most professionals with whom women with disabilities come into contact. (Gardner in Kallianes and Rubenfeld, 1997).
Waxman writes “Many of us find sexuality to be the area of our greatest oppression…..We are more concerned with being loved and finding sexual fulfillment than getting on a bus….” (cited in Kallianes and Rubenfeld 1997). She maintains the development of sexual identity is more difficult for young people who have bodies different to their peers, or who have learning difficulties. Overprotective parents and carers tend to keep these young people away from sexual education and normal social experiences (Shakespeare et al 1996).
Asch and Fine (1988) note that ‘to date, almost all research on disabled men and women seems to simply assume the irrelevance of gender, race, ethnicity, sexual orientation or social class….having a disability presumably eclipses these dimensions of social experience’ (cited in O’toole 1996).It seems there is tremendous resistance to the fact that not all women with disabilities are heterosexual. These attitudes have serious implications for women with disabilities wellbeing and access to proper health care. Assumptions that women with disabilities are not sexually active result in a lack of access to services and to information leaving women with disabilities without appropriate instruction on protecting themselves from sexually transmitted diseases, including HIV/AIDS and vulnerable to abuse (McCarthy cited in Kallianes and Rubenfeld 1997).
Again, a contradictory standard exist. What is expected, encouraged and at times, compelled among non-disabled women is discouraged and proscribed for women with disabilities. Many women lose custody of their children in divorce while others may have their children removed from their care by social welfare agencies, solely on the grounds that they have a disability.
A research study undertaken in Australia by Westbrook and Chinnery (1995) aimed to compare the child rearing experiences of mothers with and without physical disabilities. The study looked at the support the women received from health practitioners and members of their social networks and the satisfaction and problems they encountered in caring for their children as babies and as toddlers. The study found that:
- 36% of the disabled women received negative reactions to their pregnancy from others, compared to 9% of the non-disabled women;
- 12% of the disabled women rated their doctors care during the pregnancy as ‘poor’, compared to 2% of the non-disabled women;
- 20% of the disabled women were advised by their doctor to have an abortion, compared to none of the non-disabled women;
- 23% of the disabled women found prenatal classes ‘unhelpful’ compared to 3% of the non-disabled women (reasons given by the disabled women as to why the classes were unhelpful included: lack of information; no consideration given to the needs of the women with disabilities; feeling excluded in the classes);
- 24% of the disabled women found the maternity hospital staff ‘unhelpful’ compared to 7% of the non-disabled women (reasons given by the disabled women included: special needs of women with disabilities were ignored; patronising and bullying behaviour; rude and uncaring attitudes).
4.6. Pre-natal Screening
The culture of perfection pervades our society and has long oppressed us all as women. We are criticised as being too fat, too tall, too short, too old etc etc. Pre-natal testing has now offers up the potential to have only a “perfect child” and to reject children perceived as imperfect. Many women with disabilities argue that promotion and routine use of genetic testing inappropriately exaggerates and emphasises the negative aspects of disability whilst ignoring the worth of disabled people’s lives (Finger 1990; Hershey 1994; Simpson 1992; cited in Kallianes and Rubenfeld 1997). It is important then to examine the social context in which reproductive technologies are developed and promoted. For example, often economic arguments are used to justify prenatal selection. The British Royal College of Physicians recommended a nationwide program of prenatal screening arguing that ‘it is cheaper to screen and counsel the whole population than it is to treat affected children who would otherwise be born to unprepared couples” (Kristol 1993).
Women presented with a diagnosis of foetal abnormality may find themselves being encouraged to consider a termination and save themselves the “heartache” of having a child with a disability when ultrasound and prenatal testing is always and scientific. We must take care then that women are given a clear understanding of the accuracy of prenatal testing, the implications of the diagnosis and the space to decide for themselves whether they wish to have prenatal screening, and after screening, whether they wish to continue a pregnancy.
Despite greater risk of sexual, physical and financial abuse for women with disabilities have only limited access to information on abuse or to appropriate domestic violence services. Partnerships Against Domestic Violence recently provided some funding to develop information plain English and a limited number of audio tapes providing information for women with disabilities. Further resources of this nature are required to be distributed widely.
In Victoria we have lobbied extensively for funding to provide training for disability services regarding violence against women and for domestic violence services to receive training about responding to women with disabilities. There is a need for the two sectors to develop a collaborative working relationship to respond to women with disabilities experiencing violence. Despite the compelling need to better understand the situation of women with disabilities in Australia the Women’s Safety Survey conducted in 1996, the most comprehensive study to date on the incidence and extent of violence against women in Australia, did not include data on disability.
5. The Solution?
Clearly this quick sketch of the health issues confronting women with disabilities gives us a clear indication of the critical need to adopt an inclusive approach when planning health services. At the same time we know services are more accountable than ever for their funding but are required to accommodate the needs of a growing client base. Many service providers have greater knowledge of the needs of people with disability – and the failings of the system – but often are at a loss to know how to provide for these needs without additional dollars.
5.1. Policy Level
Government can influence health services to be more responsive in a number of ways:
5.1.1. Strategic Planning
In developing policy and contracting research, government must ensure consultation with women with disabilities is undertaken. Without specific inclusion of women with disabilities, consultations and research findings fail to identify issues and concerns specific to this group and fail then to incorporate their needs in resource allocation. In Victoria it is heartening to note that the Victorian Women’s Health Strategy is for the first time, targeting women with disabilities as a specific needs group for consultation.
Government should also ensure the development of standards and service specifications for all health services with performance indicators regarding access and training of staff in understanding the needs of people with disabilities. Services should also be required to collect data on the basis of disability to ascertain the extent of need.
5.1.3. Targeted Resource Allocation
Critical to building the capacity for health services to respond to women with disabilities is the allocation of funding rounds that target barriers to access for women with disabilities. We also need grant rounds allow for the additional costs of women with disabilities participating in and utilising services. For example, holding a consultation should budget for attendant carers to assist women with disabilities with eating, drinking and using the toilet.
5.1.4. Identifying and publicising best practice
Government can also enhance services capacity to address the health needs of women with disabilities by sponsoring and promoting best practice models in relation to specific health issues. For example, the Maternity Services Enhancement Strategy in Victoria has funded Royal Women’s Hospital to develop a model of maternity care tailored to the information and support needs of women with an intellectual disability.
5.2.1. Generic Research
For research to effectively capture the issues for women with disabilities, methodology must be inclusive of the diverse needs of women. For example, utilising methods other than written survey such as telephone and face to face interviews can be more accessible to many women with disabilities. The additional costs of such methods must be factored into research budgets. Special examination of issues as they relate to women with disabilities as a variable in generic health research is critical. This involves counting women with disabilities within the population and there are a number of indicators of disability. For example, asking women:
- if they have a disability
- if their disability restricts them in their daily living
- if they receive the disability support pension
As we have seen there is an appalling lack of research undertaken that specifically looks at the needs of women with disabilities. It is unfortunate that the Australian Longitudinal Study of Women’s Health which will survey more than 41,000 women over a period of 20 years, has not targeted women with disabilities. The survey includes only one question relating to disability: Do you regularly NEED help with daily tasks because of long-term illness, disability or frailty (eg personal care, getting around, preparing meals etc)?
5.3. Service Delivery
5.3.1. Practical access
We must ensure that services are geographically and physically accessible to all women. This is often a difficult issue for non-government organisations with minimal funding who may be tempted to take the top floor with the cheaper rental. Ensure that your funding submissions builds in the additional costs of renting an accessible building or making the necessary renovations.
5.3.2. Importance of Partnerships
Partnerships between women with disabilities and other women’s organisations allows a sharing of our different skills and knowledge. Compiling a list of relevant disability organisations in your city or town and developing a joint approach to submissions and projects is one way to ensure the development of your organisations knowledge and skills. Opportunities for leadership are clearly a critical issue for women with disabilities in achieving respect and self esteem. Organisations working in partnership provide opportunities for leadership and employment and allow women with disabilities to utilise their skills and expertise.
The Woorara project is a good example of how women with expertise in domestic violence and women with experience and expertise in relation to disability came together to identify and develop strategies to address the issues for women with disabilities in relation to violence. This work has now been drawn on by organisations in many other countries.
Gender related health care material is generally not provided in accessible formats, nor does it incorporate images of, or information for women with disabilities. information in formats that are suitable for women with disabilities and women with language or literacy skills include plain English, simple pictorial styles, audio tape, braille and video. Information should be distributed to areas where it is likely to reach women with disabilities.
Women’s Health West has developed health information videos and a peer outreach model for women with disabilities that provide a good example of accessible health information. Health information on specific issues must address some of the particular issues women with disabilities may face eg osteoporosis prevention for women with disabilities.
Service providers need opportunities to develop an understanding of the general issues facing women with disabilities and how to address their specific needs in undergraduate education and in professional training courses. Recognition that women with disabilities are diverse is fundamental to effective meeting our needs. As women with disabilities we do not automatically come from a common cultural backgrounds, have a common sexual preference, live in the city and share the same views. Service providers must take their cue from the woman presenting and focus on the information and issue she presents rather than on her disability. However, clearly there are more deep seated attitudes that require a more strategic and planned response. Prejudicial attitudes can be the greatest barriers to achieving respect, dignity and appropriate service. Employing staff with disabilities and increasing opportunities for service providers to work alongside women with disabilities may be an effective means of challenging patronising and stereotypical attitudes.
6. In Summary
In summary then it is clear that being a woman is a disadvantage in our society, being a woman with a disability is a great disadvantage in our society and to redress this disadvantage in women’s health we must work in partnership at government, research and service delivery levels.
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