Published by Disability Awareness in Action © 1996, All rights reserved
11 Belgrave Road, London SWIV IRB, United Kingdom
ISBN 1 892037 35 3
This publication is available in English, French and Spanish, in ordinary and large print, on audio-tape, in ASCII on computer disk, and in English braille
Download the "Disabled
Women Kit" as a PDF file (120 KB)
- Status of Disabled Women
- Strategies for Change
- Action for Change
"My main objective is to be an effectively contributing member of the community at large and thus contribute to the development of my country. The problem is the negative attitude in society towards the active participation of disabled people in community development I have to counter the belief that a disabled person is an object of pity who always needs assistance from somebody else. This problem is compounded by the fact that I am a woman. Being a disabled woman is a double disadvantage in my community." Gloria.
Disability Awareness in Action would like to thank Theresia Degener, Anneli Joneken and Dinah Radtke for their solidarity and expertise.
We would also like to record our thanks to all the disabled women whose experiences and achievements inspire this publication.
As always with our publications, we are indebted to the thousands of disabled people we have met and corresponded with worldwide.
People Dont See Me
by Estella Jossum
People dont see me
They think Im useless
Say any word they want.
Dont I think as they do?
I need to be recognised!
If I walk down the street
They say: "Theres a cripple!"
If I handle my crutches
They move away quickly
As though a planes taking off.
Dont do anything for me!
I need to be on my own.
If I go for work
They say, "No - give her this special, light job."
But "special" means "discrimination".
I need to express my rights
To say what I want.
My choice is not a mistake.
Dont be shy for me. Let me be shy for myself.
Let me speak for myself.
There is much talk of the death of feminism - that the war has been won and that there are few, if any, battles left to fight. Yet the media continue to stir up conflict between men and women, rather than focusing on the negative impact of gender discrimination. Similarly, disabled people are seen as at war with their bodies, desperate for cures and care. The serious issues which really limit disabled peoples lives - marginalisation, abuse and poverty - are ignored.
From our own experiences and from the 1993 United Nations Report on Human Rights and Disability we know that the human rights of disabled people are violated all over the world. This is true for disabled women and for disabled men. Our organisations in most countries are working hard in difficult circumstances to change this.
It is vital that disabled women are involved in the struggle for social change at every level.
The social status of disabled women varies according to individual circumstances and to the country in which they live. Disabled women in poor countries usually experience a particular disadvantage. Here, it is not just difficult but often impossible for a disabled woman to get an education or find a job. She easily becomes marginalised; has no place in society. She does not meet the requirements society places on women: she cannot be a "good wife", nor a "good mother", according to common wisdom. She cannot earn her living because of barriers of access and attitude.
Representation and Empowerment
Although the organised disability movement should represent and empower all disabled people, in practice disabled women have fewer opportunities to take part, to take action and to make change. However, disabled women are beginning to organise at national, regional and international levels and disability organisations are increasingly aware of the need to embrace the experiences of all disabled people - whatever their gender, sexuality, ethnic background, age, religion, language or impairment.
Contact with the general womens movement is not so easy. Interest, when shown, is often at the last minute, when disabled women approach event organisers to ask why there are no disabled speakers and are hurriedly asked to produce one. There is little focus in the womens movement on disabled womens issues.
Experience and Responsibility
Many of the things discussed in this resource kit concern disabled women and disabled men. To make sexuality, parenting and abuse "womens issues" is a mistake. Disabled men can also be victims of abuse and of gender stereotyping. We need to share concern and responsibility with disabled men, and with non-disabled women and men.
We have attempted to collate what evidence there is on both the commonality and difference in experience, though official disability statistics are rarely broken down into gender.
Who Do We Mean by "Disabled Women"?
Disabled women are women who have one or more impairments and experience barriers in society. We include disabled girls and women of all ages, in rural and urban areas, regardless of the severity of the impairment, regardless of sexual preference and regardless of cultural background, or whether they live in the community or an institution.
"Pity can disappear from one day to the next. It makes you dependent on the whims of the person who is dispensing it. The issue of rights and equality is more lasting. It is this that disabled people are increasingly demanding. Charity has too often robbed us of our dignity and our independence. " Khadija.
Status of Disabled Women
- 51 per cent of disabled people are women.
- A large percentage of people in developing countries do not get enough to eat. One hundred million people have impairments caused by malnutrition.
- International development programmes rarely address the needs of disabled women or include them in community development ventures.
- Disabled people are known to be the poorest of the poor in every country.
- The problems of women are compounded by disability. For example, women are not targeted for prevention information campaigns on HIV infection. Disabled women are doubly ignored.
- Many disabled people, especially elderly disabled women, lead isolated lives - unable to go out of their own homes or even move around adequately inside them.
- Disabled people are often denied access to public places because of architectural barriers or discriminatory attitudes.
- Even in a rich country like Sweden, which has among the best housing policies in the world, of those not living in institutions, 85 per cent live in inaccessible housing.
- Most public transport is inaccessible to disabled people.
- In Zimbabwe, 52 per cent of disabled children get no education at all. In Asia, about 90 per cent of blind children have no access to education.
- Even in richer countries, education for many disabled children is still segregated and inadequate, particularly for those with learning difficulties. Despite integration policies dating back to the late 1 970s, 28.4 per cent of disabled children in the UK still go to segregated schools. A tiny number (0.3 per cent) make it into higher education.
- In most countries, at least two-thirds of disabled people are unemployed. In Tunisia, 85 per cent of disabled people aged 15-64 are unemployed. Disabled women find it four times harder than disabled men to get work. In Zimbabwe, less than I per cent of disabled people contribute actively to the economy, In the UK and USA, 67 per cent of disabled people are unemployed.
- Access to communication and information, especially for those with visual, hearing or learning impairments, is limited.
- The democratic voice of disabled people is rarely heard in the formulation of policies and programmes that directly affect us.
- Fewer than 12 per cent of the worlds parliamentarians are women, according to a recent survey by the Inter-Parliamentary Union. Most representative is Sweden, with 40 per cent women MPs; Norway, Finland and Denmark follow closely behind. The UK now has a record 18 per cent, following the Labour Partys election victory on I May 1997, bringing a total of 120 women MPs to Parliament. In the US, I 1.7 per cent of legislators are women. The average in Arab countries is 3.3 per cent. Ten nations, including Kuwait, Papua New Guinea, Tonga and the United Arab Emirates, have no women parliamentarians. While disability has always been a characteristic to hide for parliamentarians, Uganda assures disabled people parliamentary seats and the UK has its first blind minister and first full-time wheelchair using MP - a Scottish woman. South Africa has also had a disabled woman MP since the new administration.
- Involuntary euthanasia for disabled people is becoming more and more acceptable.
- In some hospitals, disabled people with a variety of impairments who are not dying have "do not resuscitate in the event of heart failure" put on their medical records.
We have given some indication of the overall status of disabled people. Now we will examine in greater depth how disabled women are particularly affected in various life experiences.
"With the trauma of being abandoned by my mother at an early age, I always had to be reassured by those around me so that I would not feel neglected or rejected. It took me a long time to believe in myself and my abilities." Elisabeth.
"The disability has shaped my personality. I have become more withdrawn and introspective. I usually speak only when I am sure of what is being talked about. I rarely feel comfortable in other peoples company. It does not make for much relaxation if you have to be constantly alert to understand what people around you are discussing." Eunice.
Attitudes: Isolation and Invisibility
Stereotyped and negative attitudes towards disabled people devalue us. Much of the discrimination experienced by disabled women is based on an implicit notion that we are not the same as other women and so cannot be expected to share the same rights and aspirations.
- Women are generally discriminated against due to gender bias but disabled women face compound discrimination by being both women and disabled. The isolation and exclusion of disabled women even extends to mainstream women and womens movements, which deny us our rights and identity.
- Isolation and confinement based on culture and traditions, attitudes and prejudices often affect disabled women more than men. This isolation of disabled women leads to low self-esteem and negative feelings. Lack of appropriate support services and lack of adequate education result in low economic status, which, in turn, creates dependency on families or care-givers.
- Some societies go so far as to assign fault to a mother who gives birth to a disabled child, especially so if the mother is a disabled woman.
- Disabled women and men can experience different kinds of attitudes based on gender discrimination. While men are still seen as the major bread-winners and leaders of society, a disabled man, considered "less of a man", wont conform to that stereotype. Similarly, a disabled woman wont conform to the feminine stereotype of wife, partner or mother and some lose the right to keep their children.
- Disabled women are not usually part of employment debates and initiatives. They are usually at least twice as unlikely as disabled men to get a job.
- Culture plays a big part in reducing disabled womens role in social, parental and economic life.
- Because disabled people are often excluded from society, the attitudes of the public are heavily influenced by how disabled people are portrayed in the media. Disabled women are seldom seen in ordinary roles as worker or mother.
- If you are female, in any country, the odds are stacked against you in terms of provision of basic rights, such as a decent income, education, health care and employment. Disabled people in general are also grossly over-represented among poor people.
- While disability - the barriers of attitude and environment experienced by people with impairments - means that most remain desperately poor, poverty is also a major cause of impairments. Vitamin A and iodine deficiencies, malnutrition and unhygienic environments are widespread causes.
- Many disabled women in wealthy countries live below the breadline. For example, the allowance payable to an unemployed woman in the UK is not sufficient for her to have a decent diet or to ensure bearing healthy children. The same goes for a disabled woman, who may also be dependent on a specific diet for her survival. Disability benefits, where these exist, do not come close to covering the actual costs of disability, particularly in countries like Portugal and Ireland. Technical aids and adaptations are only reaching 2.5 per cent of disabled people in developing countries of which the majority are women.
- While disabled women in such countries may live below the breadline, with an extremely poor quality of life compared to their fellow citizens, in the poorer countries, there is often no bread at all and disabled people, particularly young females, do not survive, because of preference for non-disabled male children.
"My pension is too low to secure a meal three times a day. I was eating only once a day and, as a result, I fell ill with diabetic gangrene. My pat is freezing and I have no money to live on." Woman from Latvia.
"Parents of a disabled child should be counselled to help them realise that the disability is not a punishment and that they are not to be blamed for it. Those parents who cannot afford to educate or care for their disabled child should be subsidised. When resources are scarce and parents have to make painful choices, they may reject a disabled child. The disabled child may not be seen as the most viable investment." Salome.
Health Care and Rehabilitation
- It has been estimated that services are reaching no more than 2 per cent of those in need in poorer countries. Rehabilitation is almost totally inaccessible to those living in rural areas and the international situation is thought to be no better now than 25 years ago.
- The new Convention on Human Rights and Biomedicine, adopted by the Council of Europe in November 1996, allows scientific experiments to be undertaken on people incapable of giving consent - even if the experiments are of no value to the disabled person herself. Many countries have policies to abort foetuses that may become disabled people. Some argue that euthanasia should be performed on severely impaired infants.
- Some conditions, such as heart disease, are experienced by women just as much as men, but it isnt seen that way. Operations and treatment can be delayed or even withheld. Fewer resources are targeted at women. Curing women, particularly if they are not in work, is not seen as being as urgent as curing men.
- Maternal health care is often denied disabled women, either because it is not considered right for them to bear children, or because the available services do not consider their particular needs.
- Some traditional practices, especially female "circumcision" disable millions of women.
Lack of access to information has serious effects on disabled womens health, welfare, safety, opportunities and the exercise of their rights.
- For many disabled women, lack of confidentiality and invasion of privacy, along with prejudice and access difficulties, make control over personal finance impossible.
- A lack of information on HIV and breast and cervical cancer threatens the health of disabled women. Information is not targeted at or produced in formats accessible to many women (such as braille, tape or simple language).
- Information about sex and sexuality is often limited for disabled women. Relatives whose traditional role is to share this knowledge often ignore disabled girls, as they are not seen as marriageable. As well as being a denial of our rights, this can lead to unplanned pregnancy, abuse and disease.
"A disabled woman should be guaranteed some sort of training to enable her to earn a living because she needs to be more or less self-reliant." Olga.
"I must point out that, the education I received was of paramount importance in my life. It is the foundation for what I am today. A proper education is necessary to put a disabled child on an equal level with non-disabled children." Apoka.
"A disabled woman must acquire a solid education, no matter what the cost. This provides access to intellectual pleasures, which are her rightful claim." Beatrice.
Education and Training
Many disabled people have been prevented from developing their skills because of discrimination in education and training. As with non-disabled women, the situation for disabled women is compounded by the idea that education for women is an unnecessary waste of time and money. So, if education is inaccessible, it doesnt really matter if the child is female.
- A large proportion of blind and other disabled girls in South Asia remain illiterate, while the general rate of literacy among women has increased considerably in all South Asian countries.
- In India, 97-98 per cent of disabled male children receive no education. We have no figures for disabled female children, though there is every likelihood that it is lower still.
- Even in the wealthy countries of Canada and Australia, 41 per cent of disabled children have only primary education.
Employment is a critical component in enabling disabled women to support themselves financially and to achieve self-esteem and social recognition.
- Women who are born with impairments are particularly disadvantaged.
- Even where disabled women do sometimes find work, it will be low-paid, low-status and in poor working conditions. In the UK, while 30 per cent of non-disabled men are engaged in professional or managerial work, the figures are 15 per cent of disabled men, 11 per cent of non-disabled women and 8 per cent of disabled women. By contrast, while 16 per cent of non-disabled men are engaged in semi-skilled or unskilled work, the figures are 27 per cent of disabled men, 27 per cent of non-disabled women and 37 per cent of disabled women.
The waste of human potential that unemployment ensures cannot be justified on the grounds that disabled people are not capable of working or are often absent from work - the opposite is true. High unemployment and limited opportunities are caused by ignorance, prejudice, a reluctance to make even minor changes to support disabled people and discrimination in education and training which means disabled people are less qualified than their peers. Even when disabled people find work, discrimination continues in the lack of promotion and training opportunities.
Environmental barriers create disability, limit opportunities and deprive people of their human rights. Lack of environmental adjustments and the absence of accessible buildings hinder disabled women from enjoying freedom of movement around and between different countries and different parts of the built and natural environment.
Transport and Free Movement
- There is a lack of access for disabled women to women-only services, such as refuges, rape crisis centres, health centres, family planning clinics, dress shops, hairdressers, etc. - which underlines the assumption that we are not really women, not interested in our appearance or in control of our own sexuality and health.
Transport for all disabled people is an important key to the exercise of citizenship and participation in society. Women in general, and disabled women in particular, are less mobile than men - less likely to have access to a car; more confined to the home due to social and cultural patterns and to the actual or perceived threat of danger, especially after dark.
No access to transport has serious effects on disabled peoples integration and economic activity. It prevents them forming self-help groups or taking control of their lives. Reasons for not providing accessible transport are generally based on cost and ignorance. For example, a disabled man lost a case of discrimination against Dutch Railways in 1993. The judge said that as the company was providing a public service it should provide it equally to all members of the public. However, since he didnt believe the man to be part of the public, he couldnt expect equal treatment.
"It is almost impossible for a blind person to use public transport without a guide or companion. The drivers are undisciplined and commuters compete viciously with each other to grab hold of a door handle or rail. Taxicabs could be easier. However, they are risky because few cab drivers are absolutely trustworthy and a blind passenger could be taken for a long ride to a nearby destination just to add to the taxi meter." Soledad.
"Buildings ignore the existence of disabled persons. During my school years access was a major problem, trying to go from one floor to another in buildings that had no lifts or ramps" Apoka.
Sexuality and Relationships
Family Life and Parenthood
- Disabled people are much less likely than non-disabled people to get married - the numbers range from 4 per cent less likely in Europe to 45 per cent less likely in the Philippines. Disabled women are less likely to marry than disabled men;they also tend to have a higher divorce rate.
- Disabled women are not encouraged to explore their sexuality. If they have a sexual relationship, it is assumed that they are lucky for whatever they can get and certainly shouldnt make any further demands or complain if they are mistreated.
- Disabled women are also often not seen as capable of intimate relationships or equal partnerships. If they begin a partnership with a non-disabled man or woman, they are judged to be the weaker partner - an emotional and financial burden and an inadequate sexual partner. If they form a partnership with a disabled man or woman, the attitude may be that no one else would have them; that it wasnt a genuine choice.
- In cultures where marriages are arranged, disabled women are not considered suitable at all.
- Disabled people are denied control of their sexuality and reproduction - it is only relatively recently that sterilising people with learning difficulties has been seen as an issue which even requires consideration by legal process. In China, the law demands sterilisation of disabled women with hereditary conditions.
- Hysterectomy of teen-aged disabled girls has been justified by the argument that menstruation is difficult to manage.
In most countries, girls have a lower status and enjoy fewer of the rights, opportunities and benefits of childhood than boys. Girls and women bear a major share of the burden of poverty. Poor rural women in particular are among the most deprived people in the world. They are generally sicker and more illiterate than men. What is true of women generally is particularly so of disabled women.
- In all countries, a womans physical image determines her value and her chances of getting married or forming a sexual partnership. Whether she can bear children, in particular non-disabled children, and be judged a capable parent also determines her value as a woman.
- Research shows that pressure is put on disabled women to abort pregnancies and to be sterilised.
We are more than what we look like and more than machines for bearing children. Whether we can or cannot have children makes us no less human, no less female, no less capable of experiencing our sexuality. In addition, disabled people can make good or bad parents - just like anyone else. In many cases, our experience of oppression can make us emotionally stronger, more tolerant, patient and understanding - all ideal qualifications for becoming a parent!
Contrary to commonly held beliefs, although some disabled women may face extra challenges in pregnancy, child rearing and housework, countless disabled women have proved that they can handle them all - using the organisational powers and emotional strength developed by managing their impairments and living in an inaccessible world!
Developments in Genetics
In the field of medical treatment, and in particular genetics, there are many discriminatory attitudes. It may be felt more acceptable for a persons life to be ended (or for them not to be born) purely because they are disabled.
Prenatal diagnosis - of sex or impairment - aims to avoid the birth of groups of people defined as "inferior". In the case of impairment, selection is exercised in the context of an ideology that says it is morally acceptable to prevent disabled children. Resources are not usually readily available to allow women the "choice" to knowingly give birth to a disabled baby. The latest point at which abortions can normally be performed varies from country to country, but is generally between 22 and 26 weeks; in the United Kingdom and several other countries, abortion of a foetus suspected of having an impairment is legal up to the moment of birth.
- Forced abortion and sterilisation are surgical interventions that many disabled women have felt pressure to undergo. Many non-disabled women are also encouraged to feel that they are being irresponsible by thinking about going ahead with the birth of a disabled infant; that the "kindest" thing that they can do is to end the pregnancy.
- Disabled people are not usually involved in the genetic counselling of parents who are expecting a baby with an impairment.
- Economic and emotional arguments - that a disabled child will be burden to its family and a drain on financial resources and emotional energy - are used to justify abortion, including the wider issue of responsibility to society to keep it "pure".
- The Chinese Government shelved its euthanasia and eugenics policy due to international outcry - but only temporarily, because they were hosting the Fourth World Conference on Women in Beijing in 1994. By the start of 1995, the legislation was on the statute books. The law "persuades" disabled women to undergo sterilisation and all women to abort in the case of impairment.
"In our society a woman marries into the husbands family. She is expected to work for the family, i.e. physical work Disabled women are not prime candidates for marriage. I am an unmarried mother and have never come close to marriage. I love being a mother and the responsibility l have for my sons makes my life worthwhile. However, raising two children alone is not an easy task Occasionally, I miss the company of a male partner but I try to push the loneliness away by immersing myself in my job and family." Gloria.
"The most difficult part of my life was my adolescence. Many parents did not want me as their daughter-in-law. They chased their sons away when they saw us together. Or a boyfriend would come simply out of curiosity, without any feeling, and deceive me in the most cruel way because he was ashamed to have me for a wife." Marie-Therese.
"Some men consider a disabled woman an object of embarrassment and they could never think of marrying her. Other men believe that a disabled woman cannot assume full responsibility for the household and for bringing up children." Apoka.
"Now the time has come when society should start accepting disabled women. There are many disabled women who are capable and intelligent but are rejected by society. Why? And just because a woman is disabled, she cannot get married because the mans parents refuse to accept her as their daughter-in-law. The preposterous reason is that they adhere to the old tradition and give priority to what society would say rather than to their sons feelings about the woman." Nafisa.
"The day of our wedding was another trial for us. The church was full. Some people came simply out of curiosity. My husbands sisters cried during the entire ceremony. I cannot really explain why they were crying. Life in our home is still extremely difficult. My husbands family does not want to accept me. They tell my husband all sorts of stories to create conflict between us." Marie-Therese.
"It is necessary to lift the veil on certain aspects considered taboo or unacceptable for disabled women. Child-bearing has long been considered impossible for a disabled woman. The existing mentality is that the woman is at the centre of the household, doing the work and raising the children. In general, she is like a servant" Yawa.
"Getting appropriate contraception for family planning purposes was not easy for me as a disabled person. The nurses at the clinic had a very negative attitude." Gloria.
Abuse end violence
Female Genital Mutilation
- Disabled people experience high levels of abuse of all kinds - physical, emotional and sexual.
- Abuse of disabled people is often carried out by women - on whom the person is more likely to be dependent.
- Statistics indicate that disabled women are more likely to be sexually abused than non-disabled women. Sometimes the abuser tries to convince the disabled woman, or others, that he is doing her a favour since few men will have sex with disabled women. It is very likely that cases against abusers of disabled people will not come to court.
- Because of the strong emphasis on physical appearance in every society, disabled women are made to feel less worthy than non-disabled women. This negative self-image, along with the silencing or non- belief of victims and the lack of prosecutions of alleged abusers, increases the risk of sexual abuse.
- Forced sterilisation without informed consent for the convenience of others is used to prevent disabled women having children and, mistakenly, to "protect" them from sexual abuse. It can do no such thing. It may prevent a pregnancy following rape but not a sexually transmitted disease or other trauma. Rape prevention needs different strategies. By contrast, men with learning difficulties - often also the survivors of sexual abuse - are not usually forced into vasectomies. However, this has been the case, to prevent reproduction, particularly in the United States and Canada, until relatively recently - just as women with learning difficulties are forced into sterilisations.
There is growing evidence that wide variations of mutilation are performed on female children in different countries. It is estimated that over 100 million girls and women in more than 28 countries in Africa alone are genitally mutilated. At the current rate of population growth in Africa, two million girls a year - some 6,000 a day - are estimated to be at risk of female genital mutilation (FGM).
However, information available on total prevalence and rates by type of operation is incomplete. It is often based on anecdotal reports or biased samples using unclear or faulty methods of data collection. The only country with reliable nationwide data on FGM is Sudan, where three surveys included data on this group of practices.
Outside Africa, FGM is practised in Oman, north and south Yemen, the United Arab Emirates, Bahrain, Qatar and some areas of Saudi Arabia. Reports from doctors and midwives working in the Middle East indicate that the most severe form, infibulation, is practised widely by immigrants from Sudan and Somalia. However, the extent of the practice in the Middle East is unknown and research data is required to confirm its prevalence and type. FGM is practised by the Ethiopian Jewish Falashas who have recently settled in Israel.
Clitoridectomy is reported to be practised in the developing world by some indigenous people in Peru, Colombia, Mexico and Brazil. Again the extent of the practice is unknown. Excision of the external female genitals is said to be practised by the Muslim populations of Indonesia and Malaysia and by Bohra Muslims in India, Pakistan and east Africa.
In richer countries - Europe, Australia, Canada and the USA - immigrant women from areas where FGM is practised are reported to be genitally mutilated, but there are no studies on its prevalence in immigrant populations nor on the numbers of girls at risk. There is little doubt, however, about the physical and psychological consequences of these practices, which range from mobility difficulties, impaired sexual function and infertility because of infection, to an increased risk of HIV infection.
Many disabled people face discrimination on the basis of ideas about race, religion, gender, sexuality, marital or parental status, age and language as well as impairment.
- Women with learning difficulties and women with a history of mental health service treatment may experience discrimination from other disabled women in a similar way to discrimination from non-disabled women and men.
- The symptoms of hidden impairments, which include cancer, diabetes, epilepsy, arthritis and hundreds of other conditions, may come and go, leaving the individual and others with the feeling that they are not "really" disabled, especially if the ways in which these conditions limit an individual seem to be not as severe as people with more obvious impairments.