by Mathilde Niehaus

The report on the "Life situation of women with disabilities" commissioned by the government of the state of North Rhine-Westphalia is intended to provide a building block for the creation of an action programme for the social integration of disabled people. To this end, official data on the academic and social situation of disabled women will be analysed and the women concerned will be asked about their living situation and their wishes for change. Some of the results are not only specific to North Rhine-Westphalia, but apply to the whole of Germany.

The living situation of women with disabilities is still largely unclear. In order to develop concepts for their better social integration, the life situation of disabled women must be analysed in detail." This demand was made by the state government of North Rhine-Westphalia in its statement on the outcome of the public hearing "People with disabilities - part of our society" in the state parliament, along with eleven other starting points that will have to be taken into account in the development of new disability policy concepts. This need for discussion and action is now also being recognised, taken up and publicly negotiated by other administrative players and political parties in other Federal States and by the Federal Government. This was not always the case. Since the early 1980s, affected women have been trying to make their voices heard in public. However, for a long time there was a lack of social and socio-political awareness of the problems. Disabled women showed solidarity, formed interest groups such as the "Krüppelfrauen" and repeatedly put their experiences and issues up for discussion. Questions about the social acceptance of disabilities were just as much at the centre of interest as questions about the influence of the visibility of physical impairment on their self-esteem or questions about discrimination in working life and family planning. From the very beginning, the discussions centred on asserting the right to equal rights, autonomy and self-determination. One expression of this political will is the formation of state-wide networks of women and girls with disabilities, which are organisationally linked to the state self-help associations or the disability commissioner of the respective state government. They were founded in 1992 in Hesse, 1994 in Lower Saxony and 1995 in Berlin and North Rhine-Westphalia.

The commitment in the working groups of the nationally organised networks of girls and women with disabilities focuses on the topics of "sexual violence against girls and women with disabilities", "social beauty standards and disability", "sexuality", "motherhood", "prenatal diagnostics and human genetics", "life in institutions" and "equal opportunities on the labour market and in academic rehabilitation measures".

In response to the enquiries, discussions and demands, the North Rhine-Westphalian Ministry for Equal Opportunities for Women and Men commissioned a scientific report on the living situation of disabled women. On the basis of official data from the statistics of the Federal Employment Agency, the Ministry of Education and Cultural Affairs, the statistics on severely disabled persons and the Federal Statistical Office, gender and disability-specific aspects of the living conditions of women with disabilities were identified. However, research based on official data is limited, as the problems and self-perceptions of those affected are neglected.

In order to make these views and articulations recognisable for policy-makers, interviews were conducted with affected women about their living situation and their demands. As multipliers and experts in their own right, the contact persons of the network of women and girls with disabilities had their say. They were actively involved in all phases from the preparation of the report to the presentation of the results. In such a participation model, a deliberately multiple methodological approach is postulated in the sense of a participatory policy analysis.

Against the background of the analyses of the qualitative and quantitative data, information deficits and the need for action can be identified and starting points for future research and practical work can be suggested. The following section presents some results that are not specific to the state of North Rhine-Westphalia, but apply to the whole of Germany.

In view of the fact that around one in ten of our fellow citizens is disabled - of which around three million girls and women alone have an officially recognised severely disabled person's pass in Germany - it is not possible to speak of a marginalised social fringe group, nor can it be assumed that this is a group of people with homogeneous problems. There are differences in the opportunities for social participation not only depending on the type of health impairment and disability, but also depending on gender, age, place of residence, social class and cultural affiliation. This large number of people with disabilities seems to contradict our everyday impressions. Whenever there is talk of severely disabled people, the association is always with wheelchair users, blind or disabled people, mostly with disabled men. However, it should be borne in mind that the term also refers to the consequences of cardiovascular diseases and back problems, for example; restrictions and impairments that are hardly or not at all recognisable to the outside world.

The visibility or invisibility of disability is an important factor in the type of social attitudes with which disabled people are confronted. Affected women speak of being "punished" for not fulfilling society's ideal of beauty, physical integrity and health. In comparison with men, severely disabled women are married less often and divorced more frequently. The low marriage rates and the higher divorce rates can be interpreted in the context of the role stereotypes applied to disabled women. Many women with disabilities live alone. In addition, the financial situation of many disabled women is remarkably poor and the employment rate of severely disabled women is low. According to the Federal Statistical Office, in 1992 around 40 per cent of women with disabilities who earned their living through employment reported a net income of less than DM 1,400. The problems are exacerbated when care and assistance are required.

- From the point of view of those affected, there is a lack of assistance services close to home. There is a lack of opportunities for disabled women to decide for themselves whether they want to be cared for by a male or female carer.

In the interview with the contact person of the network of girls and women with disabilities, it became clear that women with disabilities often do not dare to articulate and demand their need for help: "... You have to let this need get out first. Yes, it all lies dormant somewhere, and people talk about it behind closed doors because they are ashamed, many at least, to say: I need help. And in the end, nothing happens."

Women with disabilities call for support in the sense of "peer support" in order to be able to formulate and demand their interests: "So many have somehow never had the opportunity to recognise and formulate these needs throughout their lives ...". They have experienced that decisions were made about them and not with them. An experience that applies not only to the private sphere, but also to working life.

- The labour market participation of women with disabilities is low. Special counselling services for companies, public authorities, chambers and those affected as well as local company rehabilitation services are recommended.

The Severely Disabled Persons Act is a "law to ensure the integration of severely disabled persons into work, academic appointments and society" with the aim of promoting the integration of people with disabilities and compensating for disadvantages as far as possible. Every employer with more than 15 jobs is obliged to fill six per cent of jobs with severely disabled people (§ 5 SchwbG). If he/she does not fulfil this obligation, he/she must pay DM 200 per month to the main welfare offices for each unfilled mandatory position. However, the effectiveness of these instruments appears to be limited. The employment obligation is undermined by the possibility of paying the small sum of DM 200 per unfilled place. Furthermore, there are few incentives for companies to take on additional severely disabled employees over and above the employment quota. Three quarters of employers did not employ a single severely disabled person or did not fulfil their employment obligation in full. The actual rate in 1994 was 4.3 per cent in West Germany and 2.8 per cent in East Germany.

Unemployment among the severely disabled lasts much longer than among the non-disabled. More than half of unemployed women with disabilities are long-term unemployed. Furthermore, the labour office statistics show that fewer women than men take part in academic rehabilitation measures. According to the Federal Labour Office, in 1994 the proportion of women among those undergoing rehabilitation who entered an academic appointment with the aim of reintegration into the labour market was 29.3 per cent in western Germany and 39.4 per cent in eastern Germany. According to the Federal Labour Office, the figures for the initial integration of young people with disabilities are as follows: Among the admissions of rehabilitants to vocational training measures with the aim of initial vocational integration in 1994, 37.3 per cent were women in the Federal territory West and 35.5 per cent in the Federal territory East.

Counselling services for women, but also for companies and chambers of crafts and trades, are necessary in order to better inform both sides about their legal situation, funding opportunities and disabilities in working life. From the perspective of women with disabilities, the situation in the Federal Employment Agencies is seen as "disabled people simply form a third genderless mass. There are men and women and disabled people."

The Third Report of the Federal Government on the Situation of the Disabled and on Rehabilitation documents the specific problems of women with disabilities in academic rehabilitation. The Federal Working Group for Rehabilitation and the Federal Labour Office reacted and implemented a model project in Saxony-Anhalt, Hesse and Rhineland-Palatinate/Saarland in 1996. These are in-house rehabilitation programmes close to the employee's place of residence. What is new is that rehabilitation is no longer linked to a vocational training centre and women are informed directly about the retraining opportunities. This is intended to encourage women with health restrictions and disabilities to take part in a retraining programme. The model project with its various locations is being scientifically evaluated on behalf of the Federal Ministry of Labour and Social Affairs. The accompanying research for this five-year model is based at the University of Oldenburg.

An initial insight into the diverse risk situations of women with disabilities was made possible with the help of official statistics and the participation of those affected. Special educational research, understood as participatory research, can not only contribute to the analysis of the living conditions of disabled people and help to uncover disadvantageous structures, but above all support and strengthen those affected themselves in articulating their interests. The closing words belong to them: "Perhaps we will succeed in getting the state government to listen to us, however that may be. And that is actually my wish, because I - yes, I know how many people would like to be represented, but don't dare to come out at all, also because of disabilities, and can't articulate their demands and wishes in this way, and I think that if you can motivate them and say: Why don't you do something and get together and talk about it? Where are your problems now? So that you can then promote this self-help potential again."

The author

Dr Mathilde Niehaus has been a research assistant at the Institute for Special Education, Prevention and Rehabilitation since 1992. After studying psychology in Marburg and Trier, she completed her doctorate and was awarded the Rhineland-Palatinate state prize for "Severely Disabled People and the World of Work" for her dissertation "Disability and Social Support" in 1993. In 1996, she took over the management of the accompanying research for the model project "Residential vocational rehabilitation for women". She completed her habilitation in Oldenburg in 1997.