Triple Disadvantage: Women With Disabilities from Non-English Speaking Backgrounds Living in Australia


A report written by Lina Pane in 1994 on behalf of The National Women’s Consultative Council. Copyright 1994.


Abstract

A project was carried out for the National Women’s Consultative Council, over nine weeks – based on the experience of women with disabilities from non-English speaking backgrounds living in Australia. This was also a study of the attitudes towards women with disabilities, of non-English speaking background non-disabled women who participated in the consultancy. The project was carried out by a woman from a non-English speaking background with a disability. The research design was based on feminist research, action orientated and dialectic – an approach that visualises the world as an inter-connected ‘whole’.

Five important findings come out of the study:

  • There needs to be more research and writing on the experience of being a woman with a disability and other related areas.
  • Health professionals and service providers need to be educated as they lack an understanding of the relationship between disability and culture.
  • In general, when talking or writing about the experience of disability for people – the person should be referred to first, not the disability.
  • Feminist organisations should be accepting of women with disabilities and should be empowering non-English speaking background women to speak for themselves.
  • Social movements, like the disability rights movement and the feminist movement, should work together as they have similar issues and concerns.

Background – National Women’s Consultative Council

This report was originally prepared for the National Women’s Consultative Council. The Council is no longer in existence, but it was an independent organisation with members who were appointed by the Federal Government to:

  • consult with women about their views on particular issues being considered by the government;
  • provide information to women’s organisations and women in community about government decisions on status of women matters, and
  • bring to the attention of the government, matters of concern to women’s organisations and women in the community.

Because the Council no longer exists, Women With Disabilities Australia has reproduced this report to fill demand for copies. Lina Pane is the Convenor of the Victorian Women with Disabilities Network, and is the Victorian representative on the National Executive Committee of Women With Disabilities Australia.


Introduction

In our society, more often than not, women are discriminated against just because they are women and to be a woman with a disability is a double disadvantage.

What does it mean then, to be a woman with a disability from a non-English speaking background? One woman who participated in the study noted, ‘It means that you have three disabilities, (1) a disability, (2) ethnicity, (3) a woman, so you have to prove that you are capable of doing things as good or better than others.” This report focuses on women, who are considered opinion leaders, sharing their varied experiences with us.

Current feminist writing by non-English speaking background women illustrates that non-disabled women consider “disability” to be the primary self definition of women with disabilities. There is a lack of understanding of the issues for women with disabilities, not only in service provisions for women, but also in feminist writing. Women with disabilities seem to be ‘invisible’, excluded from women’s issues which neglect the specific issues concerning women with disabilities. (Meekosha 1990; Asch & Fine 1988)

How, then, are non-Enghsh speaking background women with disabilities perceived by women in general and society at large? The argument is basic – women and society in general need to examine the experience of women as universal, which includes: gender, age, culture, sexuality and disability. Social movements, like the disability and feminist movements, should also work together, as each is related with similar issues and concerns.

Potential strategies for improving the status of non-English speaking background women with disabilities will be outlined in section 8. This is a beginning for future work, on a subject which has been left in the background.


The Project

Research Questions

What does it mean to be a woman with a disability, from a non-English speaking background?

Are the experiences of people from non-English speaking background, specially those with disabilities (women) more disadvantaged from people with disabilities from an Anglo Saxon background?

Women with disabilities have a dual disadvantage; as a woman and a person with a disability.

What strategies are needed to improve the status of these women?

Purpose

My purpose was to interview at least ten women with disabilities from non-English speaking backgrounds who could be considered as opinion leaders and to interview at least five non-English speaking background women, without disabilities.

The statements of the women interviewed were then combined with the literature review to form a report on the current status of these women in Australian society.

Aims

To contact women with disabilities from non-English speaking backgrounds to find out what it means to be a woman with a disability from a non-English speaking background.

To contact non-disabled women to find out their perceptions of women from a non-English speaking background with disabilities.

Objectives

To identify and make ‘visible’ the experience of women from non-English speaking background with disabilities.

To produce a report on women with disabilities from non-English speaking backgrounds living in Australia for the National Women’s Consultative Council.

Provide suggested strategies to the National Women’s Consultative Council to improve the status of these women.

My bias/my values

My involvement and interest in this project was based on a personal understanding of what it means to be a woman with a disability from a non-English speaking background. I came to this project with a belief that to be a woman in general is to be disadvantaged. If you are, then, a woman with a disability, you have a dual disadvantage as you are a woman and a person with a disability.

Research to date has also very rarely, when focusing on the experience of disabled people, considered differences based on gender. Disability seems to be the primary self-definition. In this report, I have made it clear from the beginning that when examining the experiences of women with disabilities, specifically those from a non-English speaking background, that the experience of being a woman, having a disability and coming from a non-English speaking background, should be inter-connected, not separated into individual categories – together they make a ‘whole’ – a person. (See diagram 1.)

In other words, to focus on the ‘disability’ alone does not allow you to understand that total experience of a person, as (1) the person is a ‘woman’, an experience totally different from that of a man with a disability; and (2) non-English speaking background women with disabilities, different as their cultures may be, experience culture differently from each other, and to Anglo Saxon (Australian) women with disabilities.

Diagram 1

Correct
Women + Disability + NON ENGLISH SPEAKING BACKGROUND = person

Incorrect
Woman
Disability
NON ENGLISH SPEAKING BACKGROUND


Literature Review and Theoretical Context

Before reviewing Australian and overseas literature in relation to women with disabilities, who are from non-English speaking backgrounds, limited as this may be, disability will be defined. The definition will be given both in terms of international classification, as well as how it will be referred to in this report.

Disability Defined

International Classification
According to the World Health Organisation 1988 Classification of Impairments, Disabilities and Handicaps, a disabled person is one who has had one or more of the following impairments which has lasted or is likely to last six months or more; ‘loss of sight … hearing … incomplete use of arms or fingers … use of feet or legs … restriction in physical activities or doing physical work, disfigurement or deformity …’ (Alcorso and Schofield 1991:p70)

Disability- usage in report
The following is a brief summary of Disabled Peoples’ International (1990) definition: ‘disability is the functional limitations within the individual, which impair the performance of activities of daily living, thereby affecting the individual’s relationship with the physical, economic and social environment.’

Literature Review

Literature available from women from non-English speaking background with disabilities is very limited; however, it is included in general discussions in writing about women with disabilities. The experience of being a woman with a ‘disability’ is the main topic considered. Other related issues are then included, such as: age, class, sexuality and culture; however, these are considered to be secondary issues.

What it means to be a woman with a disability from a non-English speaking background doesn’t seem to be discussed by the disability movement, the feminist movement or by organisations that focus on the issues of culture and this is illustrated in the lack of literature available in this topic. The literature available that examines the issues of women with disabilities from non-English speaking backgrounds, rare as it is, will be highlighted at the end of this section.

The Psychology and Sociology of Disability
Literature in disability has undergone many changes, from being centred on medical and rehabilitative models to recent efforts of sociologists and social psychologists that focus on the inter-connections of the environment of individuals with disabilities (Phillips 1988). Human beings, as Vash (1981) argues, are more alike than different, regardless of variances in their physical bodies, sensory capacities or intellectual abilities. What makes us different is the social construction of disability, like that of gender – it is the attitudes and institutions of the ‘non-disabled’, even more than the biological characteristics of individuals with disabilities that turn characteristics of disabled into handicaps (Asch & Fine 1988; Meekosha & Pettman 1991).

Phillips’ paper ‘Disability and Ethnicity in Conflict: A study in transformation’ in Asch & Fine (1988), looks at disability as a transformational process appropriate in understanding the general experience of disability for individuals. The experience is uniquely different for each individual in accordance with that person’s potential, needs and desires. However, no matter how ‘individual’ each person’s experiences are, there are four phases of development that link their experience.

In brief, they are marginalised – which begins with relating to the reactions of family, peers and ethnic and religious communities; the onset of the disability – retreat withdrawing from all expressions of their ethnic tradition; renegotiation – combining elements from social reality and ideology to create an identity that suits the individual to live by; and, emergence – a new identity emerges, a symbolic combination of parts of the individual’s ethnicity with the physiological imitations that characterise the individual’s disability. In other words, each individual’s process of transformation is unique to their own potential, needs and desires.

Other writers, such as Vash (1981), Deloach & Gear (1981), who themselves have disabilities, have interesting approaches to understand the experience of disability. They focus on the notion of Maslow’s definition of self-actualisation (1968), where an episode in which the powers of the person come together, making a movement towards fulfillment, actualisation and enhancement. The individual seeks to fulfil their potential, beyond their physical needs. Deloach & Greer (1981), Vash (1981) and Phillips (1988) also recognise that each individual with a disability, who is able to elaborate on their disability-related experiences, is involved or influenced by either or both the women’s movement and the disability rights movements, that their collective ‘consciousness raising’, a concept which means sharing reliable information about one’s experience (Eisenstein 1984:p35-41), has resulted in heightened awareness of their social status and provided a model of self analysis.

As an example, the women who participated in this study are very conscious of their experience, as a woman from a non-English speaking background with a disability, as they are able to articulate their experience and move beyond their ‘disability’ – which is a category provided by society.

Women and Disability – Feminism
Current literature, in particular feminist writing or papers written about women, by non-disabled women, have excluded women with disabilities as a group deserving attention. Even feminist scholars who have contributed significantly to feminist thought like Eisenstein (1984), completely omit comment on the absence of women with disabilities from women’s groups and writing. Women of the working and middle classes, married women and single women, mothers, lesbians and heterosexual women, women of colour and white women, women of all ages are mentioned……except women with disabilities.

Women with disabilities are women as well, so why aren’t they included? Is disability seen as their primary identity? The literature (Stratton et al 1988; Asch & Fine 1988; Boylan 1991), seems to point out that neither the disability movement nor the feminist movement fully address the issues of women with disabilities. In the disability movement, a woman faces sexism and in the feminist movement, there are women who don’t understand her disability based concerns.

In this study, the literature on women with disabilities from a feminist analysis – written by women with disabilities – was used, basically, to illustrate how the experience of women with disabilities, no matter what background they came from, have not been recognised. Again, the lack of literature and research available illustrates this ‘invisible’ experience. What seems to be happening is that the experience is separated into categories.

Women with disabilities from non-Enghsh speaking backgrounds need to be integrated into the mainstream of research and critical thought which should include consideration of disability and culture and issues for women. Meekosha (1990), Meekosha & Pettman (1991) and Boylan (1991) illustrate this. Meekosha (1990), for example, writes extensively on the subject of feminism, as feminism tends to disregard women with disabilities because of the assumption that disability involves women only in a caring and nurturing way.

Disability has become the commonality of al1 people with disabilities, without the recognition of differences such as culture class, gender, sexuality, etc. People with disabilities are also seen as separate – not as part of the ‘human race’ – simply because disability is affected by the degree and stigma of discrimination imposed on individuals by society. In other words, society makes disability more of a handicap than it actually is for the person with a disability. In relation to women from non-English speaking backgrounds, organisation and society in general, even where they are working with women or people with disabilities, show a lack of understanding of the issues related to women with disabilities – cultural issues in particular. What is actually being done by the community to challenge and change the perception of women with disabilities and improve the status of women from non-English speaking backgrounds?

Literature that examines cultural issues for people with disabilities – and women in particular
What is important to note, before highlighting the available literature, limited as it is, is that the issues presented by the women involved in this study illustrate the various areas that need to be examined and researched more closely.

Action on Disability within the Ethnic Communities (ADEC), is an organisation which aims to increase the participation of people with disabilities from non-English speaking backgrounds and their carers in mainstream services. They also provide assistance to both mainstream and disability specific organisations to deliver culturally and linguistically relevant services.

ADEC has published many reports on cultural issues for people with disabi1ities. One of the reports is ‘Women with disabilities from non-English speaking backgrounds and non-English speaking background women as carers of disabled relatives’ (Papanicolaou et al 1990). The report illustrates the difficulties in accessing mainstream services and some disadvantages that women and girls from non-English speaking backgrounds face.

One major recent report that ADEC has produced, ‘Developing Accessible Services for People with Disabilities and non-English speaking background: A Model’ (1992), should be examined by professionals and service providers in the disability and ethno-specific services, as it provides a model that will:

  • benefit the organisation/service providers, by improving service accessibility for consumers from non-English speaking backgrounds and
  • benefit people with disabilities of non-English speaking backgrounds by catering for individual needs m the most effective way and by thus ensuring that services provided meet the needs of people from non-English speaking backgrounds with disabilities more appropriately. Basically, it’s a model that should be considered by service providers, as it would assist m providing more relevant and culturally appropriate service delivery.

Another writer, Mary Westbrook et al (1993) in ‘Attitudes towards disabilities in a multicultural society’ illustrates that discrimination against people with disabilities remains unchanged and, not surprisingly, only a few theorists have attempted to link the relationship between culture and disability. Another interesting point which Westbrook makes, which is also evident m the findings of this study, relates to the parents of the women with disabilities who are unable to come to terms with the child’s disability. The mother, for example, is reported to feel greater shame. It basically comes down to the resources and education that the medical profession and other service providers are not providing to the parents of children with disabilities. We live in a multicultural society, yet lack facilities which reflect this. The ADEC model, if used by professional and service providers, would better meet the needs of people with disabilities and their carers. There would not then be such a negative stigma attached to a disability.

Other literature, like government reports on women, for example, ‘National Non-English Speaking Background Women’s Health Strategy’ (1991), ‘National Agenda for Women’ (1992) and ‘Halfway to Equal’ (1992), all recognise that women with disabilities experience a double disadvantage, because of society’s expectations of women with disabilities. The experience of being a woman with a disability is still one of disadvantage by being categorised as one of a ‘special needs’ group. The relationship between being a woman from a non-Enghsh speaking background and having a disability is not even focused on, as disability becomes the main reference for women with disabilities.


Methods and Methodology

The research design – what I did and why – was based on feminist research, action orientated and dialectic, (a Marxist approach of theorising) – an approach to problems that visualises the world as an inter-connected ‘whole’, undergoing changes due to internal conflicts of opposing forces (Bologh 1979). As a woman researcher working with women on the project, a feminist approach was appropriate.

Feminist research is for women and takes into account women’s needs, interests and experiences with the aim of improving women’s lives one way or another. Feminist research is concerned with making women visible, rediscovering women’s history and questioning the dominant knowledge, questioning the very language we speak and the categories in which we think. It’s about changing the way the world thinks about women, especially disabled women from a non-English speaking background.

The research was action oriented to illustrate and investigate the issue – what the experiences are for women from non-English speaking backgrounds with disabilities and to develop strategies for action and change. The approach was also dialectic, in understanding or theorising, all things should be considered, not studied in isolation. (Refer to section 4.5 My bias/my values.)

Method – How I put the research into practice

Contacts – the women involved
I was given a list of names of women from non-English speaking backgrounds with disabilities, women from non-English speaking backgrounds without disabilities and organisations by the reference group established by the National Women’s Consultative Council to oversight the project, as women who may be interested in participating in the consultancy.

The women chosen were considered opinion leaders, representatives of organisations working with women or people with disabilities. I also included my own contacts. The women involved came from all walks of life, living in various parts of Australia.

What I did and why
To begin with, I wrote letters to the women and organisations introducing myself and the project and asking if they would like to participate. (Refer to Appendix l – Letters of introduction.) Included was a stamped addressed envelope for the women to reply in writing or they could contact me directly by telephone. The choice was left to the women – I intended to make the project clear and as accessible for the women as possible. By making the project accessible, this provided the women an opportunity to participate at their own level, not the researcher’s.

My involvement was to provide an opportunity for participation: offering ‘choices’, being flexible and open to suggestions and honest in approach. I was prepared to invest myself and my identity in the project. This approach brought good results as the women who responded were honest, sharing experiences with me that were very personal.

Technique

Questionnaire
The main tool was a questionnaire that was a guide for gathering information. (Refer to Appendix 2 – Question Guidelines.) Two sets of questionnaires were used: one for women from non-English speaking backgrounds with disabilities and the other for women from non-English speaking backgrounds or organisations.

  • The questionnaire for women from non-English speaking backgrounds with disabilities involved mostly ‘open’ questions, which required more than a yes/no answer and statement. The theme was based on issues of disability, culture, and what it means to be a woman with a disability. The questions were simple, using everyday language and yet ‘thought provoking”. Overall a positive response was received on the way that the questionnaire was set and carried out.
  • The questionnaire for women from non-English speaking backgrounds and organisations also involved open questions, based on disability and culture and what it means to be a woman from a non-English speaking background with a disability. The difference, however, was that I was finding out their attitudes and philosophy when working with people with disabilities who were women.

The questionnaire, even though not my first preference for gathering information, became the main research tool. Personal and group interviews would have preferred, however, since the women involved lived in different states of Australia this was not appropriate. I was able to take advantage of and use individual interviews with some of the women living in Melbourne. I also had two group discussions with the staff of Action on Disability within Ethnic Committees and North East Women’s Health Service, in Melbourne. The majority of women I contacted were either known to the National Women’s Network (NWN) of Disabled People’s International (Australia), or had heard of my consultancy through a member. This may have introduced a biased sample of articulate women with disabilities already involved in representing their issues.


What Was Found – NESB Women with Disabilities

The following information was obtained from fifteen women who participated in this consultancy. Ten women had disabilities and came from a non-English speaking background and five were ‘non-disabled’ women who came from non-English speaking backgrounds. The women’s experiences have been divided into two sections; women from non-English speaking backgrounds with disabilities and non-disabled women from non-Enghsh speaking backgrounds primarily because even though we are all people, the experience of having a ‘disability’ and being a woman from a non-English speaking background is different.

Women with disabilities – their experience

The women involved came from various backgrounds and age groups; however, there was one thread that linked them all together. They were all women who worked in the helping field, from social workers, to teachers, to community development workers. This is an interesting pattern, as the women are in a position to help others and change ‘negative’ attitudes towards people with disabilities, through their work and by their presence. They are also positive role-models for other women with disabilities – showing that a disability does not need to be a ‘handicap’!

To begin, a sketch of the women, their ages (in groups), cultural backgrounds, place of birth, and area of residence will be looked at, as well as whether they were born with a disability or acquired it later in life. The women’s experiences will then be highlighted in the sections that were used in the questionnaire. These were:

  • Culture – Disability in the context of a non-English speaking background
  • What it means to be a woman with a disability
  • Women with disabilities from non-English speaking backgrounds – the issues

Age Group
The women involved fell into two age groups; four women were between the ages of 25-38; and six were between the ages of 40-45.

Background
The backgrounds of the women were very diverse. Four women came from an Italian background while the rest came from Maltese, Polish, Chinese, Afghanistan, Bulgarian and Greek backgrounds.

Place of Birth and Place of Residence
Five of the ten women were born in non-English speaking countries while the other five were born in Australia. The women involved lived in various states of Australia; South Australia, Western Australia, Northern Australia, New South Wales and Victoria.

Disability
The disabilities that the women had were mainly physical in that their way of doing things, their everyday living was restricted due to physical limitations. The disabilities were: polio, cerebral palsy, visual impairment, paraplegia and one double amputee. Most of the disabilities were acquired after birth from seven months to the age of thirty-nine, either through sickness, accident or deterioration with the body physically ‘giving up’. Four of the women were born with the disability.

Culture – Disability in the context of a non-English speaking background
Disability for some people is their primary self definition. In this section, culture will be looked at to develop an understanding of the cultural experience of disability for women from non-English speaking backgrounds.

This section covers general questions about the women’s relationship with their families and communities, and their own perceptions of themselves from when they were young to the present. It looks at what the relationship is between being female with a disability from a non-English speaking background.

Relationship with family/community
Overall the women had a similar experience of the relationship with their family, in that the parents were either loving and supportive or over protective. The parents also seem to have difficulty in coming to terms with their daughter having a disability at/from the time of disablement and continuing to their present. There were feelings of guilt, disbelief and complete refusal to accepting that their daughter has a disability.

Not being able to speak English or understand the language seemed to be an issue. this needs to be examined more closely as it shows that the service providers, particularly the medical profession, do not seem to be providing the resources necessary to help parents understand disability. This will be focussed on again later on, as it is an area that needs to be looked into, not only by the medical profession, but also by professionals and services providers in general who work with people from non-English speaking backgrounds. It can be extended to the whole of our society which is multicultural yet lacks the facilities which reflect this. The main stream needs to be more ethno-sensitive. The experiences of the women in this project illustrate the need for this to be examined.

The siblings of the women seemed to accept their sisters more easily and were more supportive. There were times in the relationship when the brother or sister may have felt embarrassed in relation to their sisters, as the sisters were ‘disabled’ but this disappeared as they grew older.

What the women said:

“Mum always wishes that I was normal and more like my brothers. But now I am older, she knows in her heart I am not going to change and she is satisfied … but deep down … she will never accept the fact that I am disabled.”

“Both parents were unable to speak any English on their arrival … they spoke little English on the whole.”

“My parents were not able to communicate with the doctors, nor were they able to understand the explanations about my eye condition … Highlights the fact that my parents did not have any support-systems that they were entitled to.”

“I knew my society would not accept me very kindly. People stared, everywhere I went, as if I was from Mars or something with the reactions of ‘She is so young and pretty, poor thing’ to all sorts of advice on miracle cures or I had not tried hard enough to walk.”

“Oh, that child should die, one day.”

The women’s perceptions of themselves when they were younger and now:

“As a person, with no expectation of self; and realising that others also had not expectation of myself, what I was capable of achieving or doing left me dependent upon the attitudes and societal values of others. As a consequence I was passive and accepting of life situations and the expectations of others.”

“When I was younger, I used to think that I was the same as anybody else … when I was ten, some Greek boys across the road used to call me blind eyes … I was different.”

“My initial reaction was grief and despair. I wanted to die or wake up from this nightmare. After I realised this was a reality … I began to adjust to this new situation.”

“I knew I had a disability and the only reason it bothered me was when the other children made fun of me. Later it didn’t bother me.”

The women ‘s culture – what it means to them:

“My Italian heritage is very important to me. It is part of me and my personality.”

“Expectations placed on women was one of marriage and children. This expectation was not placed on me and relationships of any sort were not expected to occur.”

“As a woman in the Italian culture, I feel like I am not part of it. When I was a child and an adolescent, I tried very hard to understand its values. Now, I have completely given up attempting to do this … I am very Australian in many ways.”

“The only thing that I haven’t rejected is the sharing, giving nature that most Italians and other Europeans have.”

“As a woman, I believe that my sexuality and my emotional development have undergone positive changes, since rejecting my culture.”

“In my culture, it is harder for a disabled woman to marry as disability is sometimes mistaken as a hereditary condition … can she have children and if so will the children be disabled as well.”

“In my culture a disabled woman is seen as a burden to her husband and her family.”

“I have my own culture … My beliefs, my attitudes, about certain things in life.”

Discussion

So far, what seems to be evident is that even though the women have very individual experiences, their communities don’t seem to accept ‘disability’, due to the lack of understanding resulting in negative attitudes towards the individual with the disability. If the individual is then a woman with a disability, this negative attitude is deeper, as the expectations attached to being a woman, that is, getting married and having children, are not perceived as an opportunity or choice for the woman with the disability as she is seen as being disabled first. Even though these attitudes may not be verbalised, they underlie people’s actions and response to the woman with the disability.

A lack of knowledge and inability to understand English is a major contributor to the lack of understanding and negative attitudes towards women with disabilities. The medical and disability services and society in general do not seem to assist in relation to this difficulty, as the attitudes of parents and the community illustrated, but seem to perpetuate the existing misconceptions of disability by not providing information and support services that are essential to meet the needs of people from non-English speaking backgrounds.

It is not only essential to improve the understanding of disability for people from non-English speaking backgrounds, it is also important for the individual who has the disability to ensure that their perceptions of themselves and their disability is not tied up with the negative attitudes and misconceptions of disability held by society. This discussion is linked to Phillip’s (1988) four phases of development, marginality and retreat examined in the literature review.

What it means to be a woman with a disability
Disability not only affects a woman with a disability, but also the people around her. Whether they are family, friends or acquaintances, their attitudes towards her or other women, at some stage of contact, are affected by the fact that they are ‘disabled ‘. Having a disability affects the way women behave, interact and view themselves.

This section looks at the experience of disability for women – what it means to them.

Women with disabilities, in their own words:

“My disability is part of my self and it is in the last five years that people have been made to accept me, regardless of how they see me and the motorised wheelchair I use for mobility … However, there was a time in my growing up and early thirties when I did not accept myself because of others’ perceptions of my disability.”

“I don’t really know if I can ever accept it, but I know I really haven’t got a choice, so I’ve got to make the best of what I have. Or I can choose to look at it in another way, I’m not disabled. I’ve always walked this way. So really, you can never miss what you’ve never had.”

“I see my disability as an opportunity for spiritual growth and development. I believe that people need to be educated about disability … I now accept my disability as part of my self. However, as a child I hated myself and had to work through quite a lot about my disability.”

“Disability made me change my outlook on life and perception of myself then, as part of the adjustment.”

“I also take my disability as a challenge, like we are all in the marathon race called ‘living’. I and a number of people are given added burdens or responsibilities to try and slow us down or add variety to the race but eventually we get there like everyone else.”

“I’ll be lying if I say that I have accepted my disability. There are ups and downs … It gets better as time goes by.”

Discussion

Disability is an important part of one’s self. Coming to terms with one’s disability depends on each individual; however, there are times when it is difficult to accept oneself because of a disability, due mainly to the attitudes of society which make the disability, the biological characteristic, into a handicap. This is evident in the responses of the women.

With time, however, the disability is come to terms with, as it is a part of the self and there is no longer any concern about what people say or do. There are always ups and downs but they are worked through just as they would be by anybody else. By moving beyond the disability, fulfilling ambitions and dreams, the disability becomes less of an issue for each individual woman. The attitudes of society, however, still exist in general, which make it more difficult and challenging.

What needs to be done is to break down all the negative attitudes and physical barriers which exist in society. The women involved in this project provided some suggestions, detailed in the following section, for future directions for people with disabilities, particularly women with disabilities from non-Enghsh speaking backgrounds.

Women with disabilities from non-English speaking backgrounds
Most research to date on people with disabilities seems to assume the irrelevance of gender, race, ethnicity, sexual orientation or social class. The literature focuses on commonalities among all disabled people rather than differences. Women with disabilities have been ignored by those concerned with disability as well as those examining women’s experiences.

Before we look at what the women saw as the issues, the above statement received some interesting feedback which should receive close attention as it illustrates the situation of women with disabilities and other areas of concern and importance.

What the women said:

“In essence, I agree with your statement, that literature currently available does focus on commonalities among all disabled persons … this has given rise to the myth that the needs of all persons with disabilities are essentially the same.”

“Women’s needs and experience as a whole have been much neglected especially in the areas of relationships, marriage and births.”

“To my knowledge there is very little being written about gender and sexuality regarding women. I feel that disability is over emphasised when really, women with disabilities have the same feelings as able-bodied women.”

“As human beings, the reactions to disability probably does not have a great deal of difference in terms of gender. But the social barriers affecting a woman may be greater than for a man, although the expectations of women to perform in employment and education may be less.”

“Very little literature discusses women’s sexuality issues. Motherhood is not encouraged or discussed as disabled women are generally considered not to have the ability to manage their disabilities and nurturing their children at the same time.”

The issues
The issues raised and changes that are needed to recognise the varied experience of women with disabilities, no matter what their background, are documented in the following suggestions from the women:

  • More research and documentation needs to be available which addresses the experiences of women with disabilities, specifically, the needs of women with disabilities from non-English speaking backgrounds, to assist professionals and other service providers working in the area of disability.
  • Health professionals and service providers in general need educating and information, to be able to understand the family dynamics of people from a different culture.
  • When conducting research, gender, class and cultural issues should be emphasised much more than they are and disability should not be the main issue addressed. Disability can not be seen on its own without other related issues such as gender, cultural background, age, class, sexuality and so on.
  • People working with people with disabilities should talk to women that have disabilities, in order to determine the issues, and should not presume that they know what these are.
  • There needs to be greater exposure of positive images of women with disabilities.
  • Government and service providers should pay special attention to women with disabilities from non-English speaking backgrounds as it is twice as difficult for them to access services because of language barriers and different cultural attitudes.
  • Women with disabilities from non-English speaking backgrounds should be empowered to take charge of their own lives through lobby groups, government, public pressure, etc, in order to change their situation.

Discussion

In summary, the women involved in this study were aware that their experiences as women from non-English speaking backgrounds were neglected. Disability seems to be the main focus of attention of those who are not disabled, while being female or from a non-English speaking background is not important. Basically, it comes down to the images that society portrays of women with disabilities – there is no positive exposure. In fact, women with disabilities are quite invisible, let alone women with disabilities from non-English speaking backgrounds.


Non-disabled women from non-English speaking backgrounds

In this section, five non-disabled women from non-Enghsh speaking backgrounds, who participated in this study, provide their views and understanding of women with disabilities, in particular, those from non-English speaking backgrounds, and what they see as the issues.

Before the women’s views are expressed it is important to highlight some of the issues that came out during the ‘information collection’ exercise and my reasons for presenting the questions for non-disabled women from non-English speaking backgrounds in the way that I did. This is important in that it was questioned by some of the women who participated and those who chose not to participate after receiving a copy of the questions.

My questions were set out to find out the women’s attitudes towards women and disability and issues relating to their also being from non-English speaking backgrounds. The questions were set in a very ‘open’ format and were not biased or intentionally leading. The women could take whatever direction they pleased. Some women, however, found this to be overwhelming and confusing, while other women did not consider my questions appropriate. This was due to the questions I was asking such as: Define disabled; what does it mean to be a woman with a disability from a non-English speaking background, and so on.

The response I received to the questions was, how could I ask what it meant to be a woman with a disability, when a non-disabled woman does not have a personal experience of disability. I agree with this position to a certain extent, as the ‘feelings’ of a woman with a disability from a non-English speaking background, as an individual are unique. However, this does not mean that we should not try to understand each other. We all have a basic understanding of what it is like to be oppressed, as we all face attitudinal barriers sometimes, particularly if you are a woman from a non-English speaking background. We are al1 women … “and even if our life circumstances are different, we have both suffered forms of ‘put-downs’ or been patronised.” (Chaplin 1988, p24.)

The responses of the women who did participate in the study are divided into three sections:

  • what women from non-English speaking backgrounds see as the main issues and associated philosophies when working with women, people with disabilities
  • what does it mean to be a woman with a disability
  • how can the situation of women with disabilities from non-English speaking backgrounds be improved.

A sketch of the women – their ages, background, place of residence in Australia and profession will be briefly examined before illustrating some of the women’s responses. A discussion on their responses will take place, as well as a general discussion on the ‘questions’ and how these correlate with the responses of women with disabilities.

Age
The women’s ages fell into three ranges. One woman was between 20-25 years of age, two women were between 30-35 and two women were between 45-50.

Profession
All five of the women stated that they had experience in working with women from non-English speaking backgrounds with disabilities. Four women worked specifically with people from non-Enghsh speaking backgrounds, with a focus on disability issues related to women and children. One woman was a psychologist who has worked with adults and children with disabilities.

Background and place of residence
Two of the women were of Italian background, one woman was of Hungarian background and the other two were of Greek background. The women involved were from New South Wales and Victoria.

What women from non-English speaking backgrounds see as the main issues and associated philosophies when working with women, people with disabilities.

What the women saw as the issues:

“Younger women with disabilities, after finishing school are hidden away and no opportunities are given to them to fulfil their potential Parents and carers are over protective and they don’t know of services available … NESB women face triple disadvantage – their ethnicity, sex and disability…..services need to be aware of these factors and take them into account in the planning and delivery of services.”

“…..they don’t have access to relevant community services, information…..there is a stigma attached to their illness (in relation to psychiatric disability).”

“…..empowering women to take charge of their lives”.

Their philosophies:

“…..to give people, irrespective of their ethnicity, ability, disability, race, gender, socio-economic status and religion, the opportunity to develop their potential and their human rights.”

“…..to provide health information/referral…..ensure that NESB women’s needs are appropriately met, through existing health services, policies and programs.”

“……improve their own lifestyle and give them a sense of independence and sense of self-worth and confidence.”

What does it mean to be a woman with a disability?

What the women said:

“A woman with a disability is disadvantaged further by her disability, as her set values and attitudes regarding women’s roles….and often these do not reflect the progressive legislation introduced by governments to assist women to gain access to rights.”

“A woman with a disability has different kinds of needs to women who are not disabled and she has the same needs plus other needs which are just a little bit different.”

“I don’t believe it’s up to anyone without a disability to define or presume to define, how a woman with a disability should define herself and on what terms.”

How can the situation of women with disabilities from non-English speaking backgrounds be improved?

What the women said:

“…..there should be ethno-specific and multicultural organisations in the welfare and disability fields to work with this group of women.”

“Work with the mainstream services and try to promote the existing guidelines for working with NESB people with disabilities.”

“More women from NESB with disabilities need to be encouraged and resourced to actually be in the position to be able to undertake such analysis and study……”

Discussion

Overall, the responses of the women were quite positive, as they seemed to understand the issues for women with disabilities from non-English speaking backgrounds. The issues raised are very similar to those raised by women in Part One, as they realised how services lack the facilities to cope with cultural needs and issues. The language barrier is also seen as a problem, as well as the stigma associated with have a ‘disability’. This is seen to be due to the lack of information that needs to be culturally appropriate and available.

Another similarity to the responses of the women with disabilities from non-English speaking backgrounds, is that it is recognised that a woman with a disability has a double disadvantage and that if you are from a non-Enghsh speaking background you have a triple disadvantage.

Referring to the original questions, it is also evident that the women, when responding to the question ‘what do you see as the women’s primary self definition’, mostly responded that this depended on the women themselves – how they view their disability and themselves. This also depends on what kind of services there are that support and encourage them to develop their abilities.

In our society, men and women have similar needs as people, yet different needs because of their gender. There are also differences due to sexuality, background and disability.

Disability, for example, has been used as a category to divide off many experiences, like that of being a woman from a non-English speaking background. The experience of being a woman from a non-English speaking background or a woman from a non-English speaking background with a disability is basically the same – the difference is the disability. However, it should not be used as a ‘platform’ to separate the experience, as this only perpetuates and reinforces the existing position of people with disabilities, that is, that they are seen as ‘disabled’ first.


Strategies For Future Directions

As this project has involved consulting with women from non-English speaking backgrounds with and without disabilities, the following strategies for future direction are based on the issues which they see as important. It is also a list of recommendations, which have ‘come out’, from my involvement in this project.

There needs to be more research and writing on the experience of being a woman with a disability, specifically in areas such as:

  • women from a non-English speaking background;
  • women’s experience in the areas of relationships, marriage and births;
  • motherhood, as it is not encouraged or discussed, as disabled women are generally considered not to have the ability to manage their disabilities and nurture their children at the same time.

When conducting research, gender, class and cultural issues should be emphasised much more than they are and disability should not be seen as the primary topic.

There needs to be a greater exposure of positive images of women with disabilities, as presently there is no positive exposure. Women with disabilities are ‘invisible’.

More research needs to be undertaken on younger women with disabilities, as it appears that there is a lack of opportunity for them to participate and fulfil their potential.

To ensure that the needs of women from non-English speaking backgrounds are appropriately met, through existing health services, policies and programs should be examined further, such as the one developed by Action on Disability within Ethnic Communities (ADEC), which is illustrated in this report: ‘Developing Accessible Services: for People with disabilities and of NESB: A model’. If applied by service providers, specifically in the disability and ethno-specific services, accessibility for people from non-English speaking background would improve.

More women from non-English speaking backgrounds with disabilities should be encouraged and resourced to undertake research projects on issues which affect them.

Disability should not be used to separate the experience of people with disabilities from other cultures as this only perpetuates and reinforces the existing position of people with a disability – that they are seen as ‘disabled’ first.

Government and service providers in general should pay special attention to the needs of people from non-English speaking backgrounds, particularly women with disabilities, as it is three times as difficult for them to access services because of the language barrier and different cultural attitudes.

That the National Women’s Consultative Council investigate funding for future research on the needs of women with disabilities as this is an area that requires further investigation.

Proceeding from these findings, a follow-up project on women from non-English speaking background women with disabilities should be undertaken as the overwhelming response to this study illustrates that there is a great need for research conducted over a longer period of time.

That the National Women’s Consultative Council recommend to the Minister that a woman from a non-English speaking background with a disability be appointed to the Council.


Conclusion

This report has focused on the experience of women with disabilities from non-English speaking background living in Australia, women who have honestly shared their experience about what their issues are. To be a woman with a disability from a non-Enghsh speaking background means you have a triple disadvantage. However, the main disadvantage is the social construction of disability, rather than the biological characteristic. The experience of being a woman from a non-English speaking background, or a woman from a non-English speaking background with a disability is basically the same, the difference is the disability.


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