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The "case" for disabled women
18th February 2004
17:00 hours
European Parliament
Brussels
TEXT OF THE INTERVENTION OF ANA PELÁEZ, MEMBER OF THE WOMEN’S COMMISSION OF CERMI AND OF THE WOMEN’S COMMISSION OF THE EUROPEAN DISABILITY FORUM IN THE PRESENTATION IN THE COMMITTEE ON WOMEN’S RIGHTS AND EQUAL OPPPORTUNITIES OF THE EUROPEAN PARLIAMENT
Good afternoon Madam President, Ladies and Gentlemen,
To begin with, I would like in the name of EDF and in my own name, to express our sincerest gratitude to the Committee on Women’s Rights and Equal Opportunity, to the various Parliamentary Groups and, of course, to all MEPs, for the courtesy shown in welcoming us and listening to us. Allow me to make a special mention to the Group of the Party of European Socialists, as well as to the MEP Elena Valenciano who suggested this hearing, and endorsed totally the chapter dedicated to women with disabilities in the Report on the situation of women from minority groups in the European Union, of which she was a speaker. I also want to thank all the other spokespersons, Groups and Members of the Committee for having received this suggestion so favourably.
We consider that this hearing will help us for our firm and sustainable purpose to include the situation of disabled women among the priority matters on the European political agenda, among matters that concern and worry the political scene and the public opinion. We are conscious that this is a hard objective but we are convinced that with your support we will get closer to it.
Presentation of EDF (European Disability Forum)
The EUROPEAN DISABILITY FORUM (EDF) is a non-profit organisation created in 1996, which acts as a platform of representation of the 38 million persons with disabilities existing in Europe (once the Enlargement process is completed, there will be 50 million persons with disabilities). At present the Forum is made up of:
* 17 National Councils of persons with disabilities, one for
each one of the Member countries of the European Union and the European Economic
Area (that is, the 15 Member States plus Iceland and Norway). Those Disability
National Councils are independent organisations of persons with disabilities
and they include the main groups of persons with disabilities of each country.
On the other hand, the National Councils of Slovenia, Estonia, the Czech Republic
and Malta have observer status in the EDF.
* Over 85 European non governmental organisations which represent the various
groups of disabilities and their interests in the European Union, specialised
by type of disability or sector of activity.
Their philosophy is to eliminate barriers and prejudices towards disability, by promoting the full participation of persons with disability as persons and citizens with full rights, applying the following maxim; “NOTHING ABOUT DISABLED PEOPLE WITHOUT DISABLED PEOPLE”.The mission of the Forum is to promote equal opportunities for persons with disabilities and protect their human rights, to defend the common concerns of all types of disabilities and act as an independent and strong spokesperson for all disabled citizens in the framework of the dialogue with the European Union.
The Disabled Women’s Committee of this Forum shares this philosophy within its framework of action, but it dedicates its efforts to the specific defence of the rights of all of us.
Women with a disability in Europe – The current situation
Traditionally, society has tended to isolate and segregate women with disabilities, and, in spite of the achievements and progress made lately, this type of discrimination (subtle sometimes) still is a serious and alarming problem. But, contrary to what happens with other types of vulnerable or discriminated groups, women with disabilities generally lack efficient legal resources or measure to eliminate and correct these discriminatory conducts.
We continuously face these circumstances, which become clear
in higher figures of unemployment, less access to health services, greater lacks
in education, scarce or non-existent access to programmes and services planned
for women in general, greater risk to suffer situations of violence and all
types of abuse, etc. This reality gets even worse due to the existence of rules
and policies that encourage dependence and due to the difficulty of introducing
modifications in the already existing habits. Equally, we, the women with disabilities,
and even more than men with disabilities, have to put up more crudely with the
persistence of prejudices, stereotypes and preconceived ideas, widespread in
all areas and which alter the social image and the normal perception of this
human group.
Furthermore, this situation of special discrimination suffered by women with
disabilities gets even worse depending on which member state they come from,
as there exist significant differences in the treatment given to women with
disabilities according to the country where they come from; these differences
will become greater from next May 2004 with the incorporation of the ten new
countries from the Eastern part of Europe.
Data from the few existing studies show that women with disabilities enjoy a lower status in our society, they suffer a situation of enormous social, economic, educational and professional disadvantages (for example I can comment to you that against 55% of women without disabilities who have a job on the European scene, only 25% of disabled women are working, furthermore the quality of employment is usually poorer, that is lower wages, inferior status and lesser benefits than those of men with disabilities; in the aspect of gender violence, almost 80% of women with disabilities is a victim of violence and runs a risk four times greater –than the rest of women- of suffering sexual violence)1.
We, the women with disabilities, are an isolated and invisible social group, who faces all types of restrictions and limitations, who has suffered a long history of unequal treatments, we have been consigned to a position of political helplessness, due to circumstances outside our control and which come from stereotypes and prejudices that undermine our capacity to participate in and contribute to the society where we live.
The continuous existence of unjust and unjustified discriminations
and prejudices deprives women with disabilites from the opportunity to compete
on equal terms, as well as take advantage of opportunities enjoyed by any person.
We consider that this sets off a situation of injustice and violation of human
rights.
____________________
1 “Women-Disabled Women” . Conference by Lydia La Rivière Analysis
of the needs and demands of women with disabilities in Europe
The scope of needs and demands of women with disabilities coincide
with those fields where it is most urgent and necessary to exercise an intense
activity which will transform into reality the equality of rights and opportunity
of these women with that of the rest of the citizens.
When dealing with the social reality and the objective situation of women with
disabilities, the attention is focused preferably on the areas that cause more
factors of exclusion for women in general, bringing a lower level of personal
and social development and fewer possibilities to have a normal access to the
rights, goods and services of the community.
The most common needs and requests of women with disabilities are:
- Non discrimination and equal opportunities. Women with disabilities, taken in general, still suffer discrimination due to gender and disability, these facts mean a violation of the rights guaranteed to everybody, independently from the circumstances.
- The incorporation in the labour market on equal terms. This is one of the areas of concern for women with disabilities as well as for women in general, but the effects are suffered in a more negative way by women with disabilities; given that with a lack of adequate training and skills, they have fewer or no possibilities to enter the labour market, receive wages and improve their situation. For this reason, we ask for a real and effective commitment from the part of the Member States and the European Institutions to help us out by harmonising our family and working lives, in spite of this situation of multiple disadvantages.
- Furthermore, the rate of unemployment of women with disabilities is particularly worrying (it is set at about 75% of the total population between 16 and 64 years-old, a situation which is permanent in time due to personal factors (such as negative self-esteem, ignorance of the own capacities and potentials, ignorance of the present characteristics of the labour market, lack in training, etc.), family factors (such as over-protection, lack of confidence in the capabilities of the woman with disabilities, her relegation to a non commercial activity within the own family, difficulties to harmonise working and family lives, the frequent control of the wages by the own family, etc.) and social factors (such as remaining prejudices from the employers themselves, lack of social protection measures, hostile community environment, lack of representation of the woman with disabilities in positions of responsibility in the associative disability movement itself, etc.).
- In the aspect of health, women with disabilities are among
the most important consumers of medical and sanitary care. Many studies show
that women are more prone to be admitted in institutions than men, as well as
the greater prevailing of some illnesses that end up in permanent disability
in women than men. There are numerous barriers to get access to family planning
and reproduction assistance, not taking into account the need for the persons
concerned to control themselves those situations. Proper awareness raising and
training are necessary for the medical and sanitary personnel on the specific
care of women with disabilities when they use sanitary services.
It is also of basic importance to reduce the period of time until a precise
and reliable diagnosis is made, in order to minimise the created anxiety and
loneliness due sometimes to the time that has to elapse until reaching a diagnosis;
at the same time, we have to strengthen prenatal attention and diagnosis.
- With regards to the problem of gender violence, it has been proven that the confluence of factors such as gender and disability turns women with disabilities into a population running a great risk to suffer some type of ill-treatment; the figures we have at present in Europe refer to approximately 40% of women with disabilities suffering or having suffered some form of violence. At present, the political groups, the equal rights institutions and society in general are becoming more and more conscious of the existence of violence against women, so information, advisory and protection programmes to help women who have suffered some form of aggression have increased. Nevertheless, these programmes do not take into account the peculiarities of women with disabilities and they become inaccessible to them.
- Specially vulnerable women with a disability. We must not forget that within the population of women with a disability there are a number of groups which are specially vulnerable as a result of a series of additional factors which aggravate the discrimination they suffer: children, severely disabled women, women who cannot represent themselves, women in rural settings, immigrants, etc.
- Families. It is important to encourage an attitudinal shift within families to free women with a disability from the particular overprotection they suffer in comparison with other members of the family and which is much stronger than in the case of males with a disability. In a family setting both women with a disability and mothers with a disability suffer discrimination due to the social role traditionally assigned to them.
- Self-perception and social image. In many cases, women with a disability have low self esteem due to the influence of the disability on women’s body image, which does not fit with the image of feminine beauty created and disseminated by the mass media. The disability itself plays a negative role in maintaining social relations, especially those of an emotional nature. In general terms, the image of women with a disability is mistaken and insufficient. She is considered asexual, intellectually challenged and so on.
Proposals of the Disabled Women Committee of the European Disability Forum
The proposed actions the Disabled Women Committee of the EDF would like to present to this Committee are the following:
1. In all policies aimed at sex equality, non-discrimination and equal opportunities for women drawn up by public authorities, horizontal measures and activities aimed at women with a disability should be included as core actions given the particularly vulnerable nature of this group in terms of rights and the real possibilities to lead a normal life.
2. As a specific transversal measure, it is proposed that all incentives, assistance and bonuses provided for in general terms in European legislation in favour of people with a disability are systematically improved in the case of women with disabilities, thereby establishing positive discrimination in favour of women with a disability within overall policy.
Although during the first stage of dealing with disability positive discrimination measures are effective, they may become a hurdle to the real inclusion of women with a disability if they are prolonged and if the necessary qualitative leap towards considering this issue a transversal theme involving all European policies does not take place.
3. In connection with the previous points, the disability-specific directive promoted by the EDF and supported by the European Parliament and the Disability Intergroup of the European Parliament must prosper. The reality of women with a disability must be specifically reflected in this directive.
4. Social policies must be sufficiently flexible to take into account the heterogeneous nature of the diversity of those making up the collective group of people with disability.
5. Given the importance of employment in overcoming the situation whereby women with a disability are “invisible”, and in promoting their empowerment, European institutions must control and monitor the transposition process of Directive 2000/78 establishing a general framework for equal treatment in employment and occupation in each member country. At the same time, the European Employment Strategy should include the concurrent factors of sex and disability in a more ambitious manner than up to the present time.
6. We request members countries adopt measures to increase the participation of women with a disability in politics and in decision-making processes.
7. We urge member countries to continue supporting the integration of NGOs in the work of the United Nations in connection with the drafting of a “Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities.”
8. As regards the previous point, we demand member countries request the inclusion of representatives of people with a disability in the Official Delegations of each of the Governments attending upcoming meetings of the Ad Hoc Committee on the aforesaid UN Convention, thus reflecting the philosophy held by the European disability movement (“Nothing about disabled people without disabled people”).
9. The European Union and its member states should gather statistics on the status of people with a disability. These should be broken down by sex and include a series of reliable and precise indicators allowing analysis and comparison of the situation of women with a disability in Europe and the evolution of this situation.
The European Parliament should urge the European Commission in order that Eurostat considers the real situation of women with a disability in all its work.
In addition, we request that the European Ombudsman carries out a wide-ranging social study on the status of women with a disability in Europe, from the point of view of their human rights. This study should be used as a basis for subsequent regular studies which allow us to measure the progress made by women with a disability in Europe and the efficacy of the policies developed.
10. Strident measures must be taken against all forms of violence
practised against girls and women with a disability, in particular institutionalised
violence. The European Parliament should recommend that the European Commission
encourages member countries to draw up legally-binding guidelines to safeguard
the human rights of women in institutions, women in a situation of dependency
and women who cannot represent themselves. Specific studies should also be conducted
on violence against women with a disability, with the aim of determining the
origin and scope of this violence and better defining the desired measures which
should be adopted
Conclusions
These are, in short, the guidelines which, in the opinion of the European Disability Forum, the new policy regarding women with a disability in Europe should follow. This new policy will come out of the work of this Committee, work in which we have placed so many of our hopes. If I may, allow me to urge you to ensure that all the hard work of so many people has practical, real effects on women with a disability in the European Union.
I will leave with the commission both copies of this speech and a selection of different documents on the matter which has brought us here today and which I feel may be of interest to you.
Many thanks, Madam President and members of the Committee. If you have any comments or questions I will be very happy to take them.
Disabled women – non-disabled women: Strategies of action within the European context by Lydia la Rivière Zijdel
When speaking about disabled women it should always be done in relation to all women and the inequality that exists in our society between women and men.
But to understand the position and difficulties of disabled women as citizens in the European Union, but also as participants in both the Disability and the Women's movements we have to understand a little bit more of the historical structures in society and the causes for inequality and discrimination that women face on a day to day basis.
Discrimination of women
Despite the considerable progress made since the last century, equality between women and men is far from being a reality and signals of backlashes reach us from countries that were more advanced in reaching their goals for equality between women and men. The many inequalities that still exist in Europe are particularly obvious when the girl-child starts school or when women begin to work and/or start a family. Moreover if we look especially to the situation of young black, migrant and refugee women, we see similarities with women and girls from extremist countries. One of the biggest concerns remains the violence against women that takes many forms (domestic violence, street violence, sexual harassment, rape, gang violence, slavery, etc.) and concerns all women all over the world regardless of age, disability or social background. The number of women in the European Union dying as a result of domestic violence is growing rather than decreasing and it is estimated that one woman in five in Europe experiences some form of violence.
The fight for real equality between women and men is clearly not over and needs even more emphasis to tackle the present backlashes for the position of women in countries like Sweden and The Netherlands, for a long time being regarded as exemplary models for equality between women and men.
Inequality between women and men is based on a long tradition
of paternalistic, cultural and religious dominance of men over women. The decision-making
structures and the financial world are male dominated and it is still men who
decide on war and peace.
But what has this to do with disabled women you may wonder? Well let me be very
clear the position of disabled women in the world is on gender grounds no different
from non-disabled women. On the basis of their impairments they face however
disabling factors that restricts them in a larger context than non-disabled
women.
Position of disabled women
If we look to the participation in decision-making structures of disabled women and mothers of disabled children we see an even lower to zero percentage. The same is applicable within the disability organisations and women's organisations. Although there are approx. 53% of disabled women of all disabled people with a growing number to approx. 58% in 2015, most disability organisations are run by men and gender mainstreaming of policies and decisions is not a fact or even a topic. The same can be said for mothers of disabled children. A large number of parents with disabled children are divorced leaving the mother with the sole caretaking of her child. Her chances to active participation in politics (within GO’s and NGO’s) is very limited in comparison to mothers of non-disabled children.
Society often questions whether the situation of disabled women is so very different from the situation of disabled men. The notion of multiple discrimination, on grounds of gender and disability is (and has proven to be) very complex. The situation as I described it for non-disabled women is the same or I could say even worse for disabled women.
Is disability gender neutral?
To answer this question we have to first explore what we mean with disability and gender. Both are so-called social concepts and often inextricably linked with the medical/biological concepts of impairment and sex.
There is a clear difference of the usage of the world disability within the medical and political discourses (e.g. disability organisations) and the way the word is used within the social discourse on disability (academic approach).
Sex and gender are two concepts often used as synonymous, which as a rule is OK in daily life, but it is not good enough in science or in politics, as sex refers to the biological aspect of women and men, and gender is the social concept that is femininity/female and masculinity/male. What is female and male is socially constructed - the proof of this is the big variations between women and men depending on time, space and class.
By analyzing the social discourse on disability and on gender,
we can perhaps more clearly understand how misunderstandings have occurred within
the disability movement both in relation to disability as well as in relation
to gender in combination with disability.
Disabled women are often seen as sex-neutral beings, as beings without a sexual
identity. They are most likely referred to as The Disabled with no reference
to being people, let alone to being a woman or a man.
This reference, often a result of the medical model, has separated the needs of the women or men in the first place from the needs related to the impairment.
Disabled women are born first as girls/women and their impairment is a secondary dimension, which is exacerbated by environmental factors. It cannot be seen as unimportant but certainly not the only distinguishing feature in an individual. Moreover it is society itself who creates (social) barriers for women with impairment that hampers them to act fully in society.
When society recognises that there is a human element in all of us, they see us as disabled women and again not distinguishing a disabled woman from a disabled man.
Society believes that disabled women and men have the same needs, based primarily on the impairment and not based on human potential and values.
But let me explain first what we mean with Medical and Social Models and why it is so important to understand its concepts in order to understand the double discrimination that disabled women face?
The Individual (personal tragedy) or Medical model
This model places the causes of the problems directly by the individual and her/his impairment. Within this model, a woman’s functional limitations (impairments) are the root cause of any disadvantages experienced and these disadvantages can therefore only be rectified by treatment or cure. The individual or medical model views an impairment as an 'abnormality', that needs to be 'corrected', 'cured', 'overcome'. The Medical Model has value in certain contexts, but when it is used as the only model for approaching disability, it is seriously defective: based on the concepts of 'normality' and 'abnormality', it sees the human body as flexible and alterable and the social environment as fixed and unalterable: if a woman does not fit the social environment, then that woman -not the environment- must be changed.
So if all disturbances in a disabled woman’s life are all attributed to the impairment it can effect her life-circle (communication, relationships, sexuality, employment, wealth, etc.).
This approach puts disabled women right away in a dependent position and even degrades them to second-class citizens position. They are caught within a care system that is lead by dominant professionals. Disabled women in these situations are expected to integrate into the care system and to adjust to the systems rules. Many of the interventions of these professionals are also focussed on the integration of that disabled woman or man into the system and society in general.
The model uses labelling and the attached objectified characteristics. They try to capture women and men by their label and attached characterizations. All blind women should be provided with a guide-dog; deaf women should learn to read lips; women in wheelchairs need push handles on their wheelchairs; learning disabled women cannot decide for themselves.
This labelling -as so poignantly mentioned by Goffman (1968) - is food for stigmatisation.
This individual or medical model does not go hand in hand with concepts as growth, possibilities and self-determination. It is more based on a line of thought that resembles a pessimistic-fatalistic attitude of the professionals involved whereby barriers and obstacles cannot be demolished.
It often leads to oppression and overpowering as they -the professionals- have all the knowledge about the impairment. It further leads to government controlled policy regulations for entitlement to services and benefits, rather than legal based disability rights. Within such attitudes and policies disabled women hardly find space to escape the scripts laid out for them and consequently it effects their self-esteem and they oscillate between acceptance and resistance. With the latter they risk deprivation of the care and services they need and also face the results of negative government decisions based on economic or political grounds.
The social model on disability
This model is from a scientific theoretical discourse completely the opposite of the former model. The Social Model, shifts the focus from impairment onto disability, using this term to refer to disabling social, environmental and attitudinal barriers rather than lack of ability. Thus, while impairment means the functional limitation(s), which affects a woman's body, disability is the loss or limitation of opportunitiesresulting from direct and indirect discrimination.
According to this model it is society, which disables women with impairments and therefore any meaningful solution must be directed at societal change rather than individual adjustment and rehabilitation (Barnes et al, 1999).
Disabled Peoples International defined the Social Model of Disability as follows:
Impairment: is the functional limitation within the individual
caused by physical, mental or sensory impairment.
Disability: is the loss or limitation of opportunities to take part in the normal
life of the community on an equal level with others due to physical and social
barriers
(DPI, 1982; Barnes, 1991,1999,2000; Oliver, 1990, 1996; Rivière-Zijdel
la, 2001)
The Social Model makes a clear distinction between impairment and disability; the former refers to biological characteristics of the body and mind, and the latter to society's failure to address the needs of disabled women. The Social Model therefore, is a concerted attempt to focus on those aspects of disabled women’s lives which can and should be changed (Barnes, 2000: 38).
The Social Model signals a radical shift in thinking about disability, recasting disability as a form of social oppression. As Abberley (1987) argued in the late 1980s, disableism joins sexism, racism, homophobia and ageism in the catalogue of social oppressions. The Social Model throws the spotlight on the need for societal change and the removal of socially created barriers and all forms of institutional discrimination (Barnes, 1991 in Thomas, 1999) in contrast to the "help the unfortunate disabled person to adjust to their limitations" (Thomas, 1999: 15) perspective that has dominated for so long.
It is important to note that disability is temporarily, culturally and situationally variable. Temporarily as it can change in time; culturally as it depends on where women live, in which culture with its attached perspectives and demands. Situationally because different work and living environments may have other influences on disability. When barriers are diminished, consequently the oppression resulting from it can diminish too.
The social model coalesces with the inclusion-philosophy (Hove, van, 1999). No longer choices for separatism - putting women aside in special care institutes -. Recognizing the power of natural networks, the present social and community structures obtain an enlarged role above specialised care. Support no longer means taking over but enabling. So in this concept we should talk about rendering services to disabled women on the basis of legal rights and entitlements not of taking care of them as a charity-based or colonial attitude.
Disabled women should be enabled to obtain space and possibilities to grow, to organise themselves and become more determinant about their lives. This can also mean that they ask for support to learn to break with the old passive and submissive attitude that they incorporated within the old structures. This emancipating process has an enormous effect on the personality and self-esteem of disabled women (Williams & Shoultz, 1982; Charlton, 1998; Goodley, 2000; Shakespeare, 2000).
Like other oppressed movements disabled women too revolted against this segregation of society. The first groups 'fought' their way through further education and the first disabled academics set the tone for the 'radical' change in sociological thinking on disabled women resulting in European and member states legislation and in the social model on disability.
The social model thinking, i.e. looking at societal created barriers, is therewith ancillary to the feeling of tragedy in relation of the impairment itself. Yet the social model thinking, or human rights based approach to disability has a more binding factor for women with various impairments than focussing on obstacles in society from an impairment specific approach. (Instead of thinking I cannot enter a building because I am paralyzed and in a wheelchair thinking why does society not create accessible buildings for all).
This is also why it should be avoided to speak of women with disabilities, although the desire to focus on women first can be understood (but we should be clear that we distinct ourselves as humans from plants, and animals anyway!), it is incorrect language as we should see disability as the social obstruction (construct) and not the impairment as an obstruction. Dis-able, means no more than being unable to participate fully in society on the basis of our impairments, or through the stigma that society attaches to a specific impairment, like they do to ethnicity, gay and lesbian and gender.
History
To understand more of the exclusion of disabled women in society
and the negative images that society has about us, I would like to make a little
trip with you in the history. We discover there common patterns. In the past
this exclusion took the form of abandonment of infants who had apparent impairments.
Some societies not only killed children with deformities; they also killed their
mothers.
Enough is known of ancient Greek philosophy and customs to provide a reasonably
clear record. To quote the famous Greek writer Plato who suggested that "the
offspring of the inferior, or of the better when they chance to be deformed,
will be put away" and Aristotle's plea for "a law that no deformed
child shall live" as examples of that philosophy.
The Spartans threw unwanted infants with impairments from a cliff at Mt. Teygetus to die. Spartans considered these infants unlikely to make significant contributions to their society, and so they simply disposed of them. The site of these killings is still marked by a public historical sign declaring that these children were killed "for the good of the development of the human race".
Athenians typically viewed as more humanistic than the Spartans also practised infanticide. They placed unwanted infants in jars and put them by temples where they could be removed by anyone who might choose to adopt them. Infants who were female or seemed to have impairments were particularly likely to be destroyed in this manner.
Infanticide was also common practice during much of the Roman era. Some of these abandoned children were rescued, only to be mutilated by their rescuers in order to make them more effective beggars.
Even now, in some parts of the world, mutilations for this purpose still occur. With the growth of Christianity, women with impairments were sometimes executed as devils. Martin Luther, for example, recommended drowning because 'idiots are men in whom devils have established themselves".
The history of past atrocities committed against disabled women may seem remote. Certainly attitudes have become more benevolent and enlightened, but how much has really changed? Even to-day, living in the 21st century, the fallacies of the reasoning behind the eugenics movement are widely recognised. The issues surrounding the elimination of disabled women through incarceration, death, and sterilisation, however, still remain.
Though the rhetoric and rationales have changed, the means are more subtle. The actual numbers may have been reduced, but efforts to eliminate disabled women continue. The human beings who were sterilised as threats to racial purity, burned as witches, or sent to the gas chambers in the past are now being "allowed to die for their own good" or sterilised for "hygienic reasons" or the alleged “inability to raise children” in this era.
Recent research has exposed the way that doctors in the Third Reich held that the quality of life for disabled women was, inevitably, so poor that to end such lives was 'mercy killing'. Such a judgement is also at the heart of the recent 'assisted suicide' cases in the USA, Canada and, using a variety of sources of material, I explore such attitudes in European member states as well.
Disabled women versus non-disabled women
Within a society that has historically regarded disabled people as (economic) burdens , it is not easy to grow up with a great self-esteem. This is even more difficult for disabled women as women in generally are regarded as second class citizens. Disabled women are valued even less than non-disabled women in relation to beauty, motherhood or parenthood, sexual attractiveness as a woman, the chance of being a wife or for instance a disabled lesbian, etc.
If you are a woman with a learning impairment, or a woman with
high dependency needs, you face even more discrimination as other women do.
This is based on the fact that society in general, including non-disabled woman
who are often the care-takers, have the feeling they alone can make judgements
about your ability as a woman. A linked phenomenon with the mother-daughter
relationship.
Disabled women throughout the European Union form the highest rate of unemployment.
They are more often deprived of good education and further education. They are
not stimulated in their development towards womanhood.
When institutionalised or being a person with high dependency needs you do not receive the special attention or dignity you need as a woman: for instance there is no time for personal care such as putting on make-up if you wish so. Clothes are always chosen from a practical viewpoint rather than from a fashionable one. Intimate care is -if given- undertaken by male assistants without consent, etc.
But greater dangers exist.
* Disabled women face very often and in many countries of the
European Union forced sterilisation.
* Learning disabled women have an even greater chance to become victims of forced
sterilisation or abortions without consent.
* Disabled women are in many cases discouraged to become pregnant; false information
is given about their physical capabilities to bear children.
* The medical world denies the right of conception by highlighting to disabled
potential mothers with an inheritable impairment/disease, their criminal behaviour
if they would become pregnant. In many cases further medical care is refused.
* Disabled women and women with mental health problems in particular are often
experimented upon by the pharmaceutical and medical industry. Drugs are tested
on them as well as undefined medical treatments, operations, and therapies.
A recent research in the UK on treatments with Electro Convulsive Therapy showed
that 68% of people treated with ECT were women and only 32% men. 44% were women
over 65! Moreover it is estimated that only about 25% of uses of ECT have been
properly reported.
Violence towards disabled women
Through major researches in the Netherlands, Austria, Germany, the United Kingdom, Sweden and recently in Spain, it has been proven that nearly 80% of disabled women become a victim of various forms of (sexual) violence.
This rate is far higher than the (sexual) violence rate for non-disabled women or disabled men.
Perpetrators of such violence are in most cases men and disabled men.
Whereas for non-disabled women family-members score highest as perpetrators, in the case of disabled women of which 68% live in institutions, the perpetrators are more often service providers, medical doctors, psychologists, priests, physiotherapists, drivers of special transport, group leaders, personal assistants and other care takers, etc.
Violence, like sexual violence against women is a power issue. From the power theory we have to admit that disabled women are a group with the least power, whether these women are white disabled women, learning disabled, disabled ethnic minorities, refugees, disabled lesbians, etc.
Disabled women face double oppression. Oppressed by disabled men (forming a -slight- minority in the European Union but having a lead in the representation of the disability movement). And oppressed by non-disabled women, who on the one hand form the largest group of professional carers or as I call it the disability industry, and who on the other hand ignored for a very long time the existence of disabled women within their own movement.
Through this oppression disabled women are deprived of their
voice in the decision making process and their rights as women.
Within many member states, where women's emancipation took place to a greater
or lesser degree, disabled women were for a long time excluded. The women's
movement did not reach out to disabled women, having the same prejudices as
society in general: the impairment (the stigma) is the biggest element of discrimination
and not the gender. They should have known better!
Disability or gender issue
If I look to the situation of disabled women throughout the European Union I see similarities and differences. Unemployment, low payment, low education, less opportunity to develop an adult relationship, poor participation in decision making processes, is also seen in countries like the Netherlands, Finland and Germany. Some member states might have laws that forbid forced sterilisation without consent, but who will adequately defend a woman with a learning disability if the legal world does not have a clue about disabled women? Some member states are highly influenced by for instance the Roman Catholic church (Ireland, Austria, Spain, Italy), or Orthodox Church as in Greece. As the church was the first institute to take care of disabled women and men, their influence is still visible in the charity-oriented organisations for disabled people. 'Doing good for the disabled' was for a long time (and in many countries still is) a Samaritan act. In many cases this has lead to less autonomy for disabled people in general and disabled women in particular.
Also the values of family life, the cultural and historical backgrounds of member states have influenced the development of women in general and disabled women in particular. If you live in a member state where women's rights are diminished to being the barer and carer of children and where men are the sole decision makers and by law the head of the household, you can understand that disabled women's rights are not even taken into consideration. And as I said earlier on, if a woman is only judged on being a fit mother, disabled women will never be accepted as full citizens if they are physically or otherwise unable to do so or facilitated to do so.
This means we have to recognize that the gender based violence is even more salient in society than the violence based on disability or impairment as the first is structurally and the latter a variable that could change over time if enough resources are available. But what we cannot change is attitudes. Attitudes towards disabled women in general and towards women in particular. As long as society stigmatises disabled women as sick, non-worthy, poor suffering persons, which is often stipulated by the words used to describe disabled women by (cripples, suffers, bound to wheelchairs, invalids, deaf and dumb, etc.) and women are stigmatised as being weak, emotional, unable to do a men's job, dependent, objects to please men, etc. we will have as disabled women a long way to go to change the attitudes of a male dominated society.
This does not mean that we should only focus on the gender based discrimination but also stipulate over and over again the discrimination on the grounds of disability or impairment. As long as society does not recognize the plead for a human rights approach to disability, disabled women and men and mothers and fathers of disabled children will need to beg for their entitlements. Because on the long run it does effect disabled women’s daily lives. Not being allowed into decision making, or not being able to earn your own money with employment are minor problems in comparison to the fact that you cannot get out of your bed because the support services are inadequate, staff do not turn up, money is not available for personal assistance, you cannot afford to hire PA’s. This means that many disabled women throughout Europe are solely or for the majority of their daily personal care dependent on family members (their mothers –sometimes fathers -, their children, neighbours etc.). For some disabled women it means when their mother (or other family caretakers) die or move out that they have to go (back) into an institute after having lived independently for most of their adult life.
I have never understood that in countries where one is blessed (or cursed) with Royal Families the caretaking of these royalties has never formed a problem and provided for by the state, but when it comes to disabled women it seems that regulations are numerous and care has to be given at low cost, therewith hardly considering the self-esteem and dignity of the women involved.
Within the European Union and its Member States the main focus is on employment. Disabled women and men are also included in the various employment policies. But over and over again I we have to stipulate that employment is not the sole solution. First of all it is questionable if all disabled women are able to be fully employed and if only part-time what does this mean for their economic independence. We are well aware that the economic independence of non-disabled part-time working women is not guaranteed and that life-long poverty often occurs within groups of low-educated and/or part-time working women. The same can be said for disabled women. Moreover if their expenditure for living with an impairment is high and benefits low.
In many member states disabled people are punished through stopping their allowances if they are not accepting employment. And if they are accepting employment and they are only able to work part-time they are living below the bread-line. This is the case for many disabled women as it is harder for them to reach the employment market in general. On top of that research show that disabled women have often lower education than disabled men.
Focusing on economic independence is a better instrument to guarantee a dignified life for disabled women than to focus on (full) employment only, which is a very paternalistic approach to the problem.
A clear shift from the medical model thinking in the European society is needed to embed in all the policies/ directives and legal measurement the human rights that disabled women and men are entitled to. Not caring for should be the guiding principle, but inclusion of.
Strategies for action
What can the European Parliament do for disabled women and what can national member states do? Changing attitudes towards oppressed groups in society needs often many generations. This process can however be stimulated by the right legal measurements. It is therefore essential that new directives are created to stimulate member states to progress with the emancipation of both women and disabled women.
* Women across Europe have been waiting for 3 years for the adoption of a new European directive aiming at achieving gender equality outside employment. Despite numerous political commitments to equality of women and men, despite strong Treaty provisions and international texts signed by all EU Member States, the European Commission has only taken a first step to address the unequal status of women and men in society. Women in Europe of course welcome the adoption of the draft directive but strongly hope it is only the first of a series of legal texts covering all areas of life, which will truly make a difference for women in Europe. Especially to guarantee the full inclusion of disabled women demands for a directive that goes much further than the present one.
* Despite wide-spread discrimination against women in all areas and a very strong mobilisation of women in favour of comprehensive legislation, the proposal adopted by the Commission on 05.11.2003 is very limited in scope (it covers only goods and services) and it appears to allow for narrow interpretation on many instances; it contains many exceptions and introduces a long transition period for gender equality in the area of insurances. The position of disabled women is not explicitly mentioned within this directive and can lead to further misinterpretation or direct exclusion in relation to discrimination in the provision of goods and services.
* Apart from strong legislation to further stimulate equality
between women and men there is a need for a more comprehensive legislation -
towards a European non-discrimination disability specific directive. Discrimination
does not occur in the field of employment only. The field of employment is closely
linked to several other areas such as for example education, transportation
and access to services and goods. Therefore a legislation within the field of
employment only, is not enough. In order for the disabled woman or man to be
an active member of the society in all areas and to enhance a broad non discrimination
approach, a new disability specific directive is needed. Such a directive should
be directly linked with a new gender directive that goes further than discrimination
on the grounds of goods and services only.
* It is further essential that the European Union strives for
a European Disability Act which goes further than discrimination towards disabled
people as mentioned under Article 13 of the present Treaty. Such Disability
Act (in comparison with the Disability Act of the United States and recommended
by the United Nations within their Human Rights Act) encourages full civil rights
and access to these rights for all citizens regardless of their disability or
impairment and it encourages specific regulations to improve the situation of
disabled women and men.
* Research focussing on the position of disabled women is needed to learn and understand more about the complexity of gender and disability. It is therefore essential that more universities in Europe have specific social sciences focussing on women studies and on disability studies. Resources should become available to create academic departments for gender studies and for disability studies to encourage students and researchers to increase the knowledge on both topics.
Legal provisions are needed to guarantee a dignified life for disabled women and disabled men and for mothers and fathers of disabled children. When disabled women and mothers of disabled children are able to participate fully and with dignity in society, as a consequence negative attitudes towards them will decrease. But also more in-depth knowledge of the academic values of disability and gender are needed to stimulate the discourse and to work towards paradigm shifts in the thinking about disabled and non-disabled woman.
As women we are strong and as disabled women we are even stronger as we have learned to overcome daily struggles and barriers. We make a difference every day again, now it is time that the other half of the world learns to understand that the world is created much better if we are both taking part in that world: women and men, shoulder to shoulder, disabled women and non-disabled women, disabled women and disabled men all together can change the world into a world wherein equality of women and men has become a true reality and wherein dignity of all its citizens: women and men becomes a true reality.
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