Review of literature on women and disability



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Exploring the research and policy gaps:
A review of literature on women and disability


Senior Researcher: Joan O'Connor

Project Manager: Ursula Barry

Assistant Researcher: Sarah Murphy
Women's Education, Research and Resource Centre (WERRC)

School of Social Justice, University College Dublin

8th June, 2006. Ā© Copyright.
The research team wish to thank the members of the Advisory Group Liz Brosnan, Western Alliance for Mental Health; Roisin Dermody, Disabled Women's Working Group; Eithne Fitzgerald, Senior Research Officer, National Disability Authority and Dr. Anne Good, Senior Research Officer, National Disability Authority for their guidance and advice throughout the project.
National Disability Authority,

25 Clyde Road,

Dublin 4

Tel: (01) 6080400

Fax:(01) 6609935

Email: nda@nda.ie



Contents
Executive Summary 3
Chapter 1: Introduction 11
Chapter 2: Context 14
Chapter 3: Personal Assistance and Care Issues 19
Chapter 4: Poverty and Social Welfare 39
Chapter 5: Labour Market Attachment 56
Chapter 6: Sexuality, Reproductive Freedoms and Motherhood 73
Chapter 7: Communication Barriers 90
Endnotes 97
Bibliography 99
Appendix 113


Executive Summary
The National Disability Authority commissioned this review of literature on women and disability in order to explore where gender issues and disability issues intersect - where the issues for disabled women are significantly different because of their gender or the issues for women are significantly different because of their disability. The purpose of the research was to synthesise and summarise the state of knowledge in this area both in Ireland and internationally.
Women with disabilities have historically been neglected by the literature in the field of disability and by feminist scholars, as well as by the disability and women's movements. Research often assumes the experience of disabled men to be representative of the disabled experience in general and consequently the majority of research on people with disabilities has not included a gender perspective. There has been a dearth of research-based information about the social, economic, and psychological circumstances of women with disabilities along with theoretical analysis providing a framework to understand and interpret their lives and experiences.
The following topics were considered in the review:

  • the developing 'visibility' of disability, women and gender as a topic in the theoretical and research literature;

  • social welfare status of women with disabilities;

  • women, disability and poverty;

  • the labour market attachment of women with disabilities, exploring their participation in the labour force, income levels, work facilitation and assistance and how this impacts on their experience as women with disabilities;

  • issues for disabled women around personal assistance, examining economic and social issues associated with care and how these affect women's experience of disability;

  • the relationship between disability and sexuality and reproductive freedoms and how this impacts on women's gender and disability identity and their human rights;

  • communication difficulties of women with disabilities.

The review does not consider the issue of violence against disabled women, access to general health services, or power and representation as the NDA has commissioned separate research where the literature is reviewed in these areas.


The review focussed on gathering research-based literature that involved both qualitative and quantitative data equally on the situation of women with disabilities; incorporated a range of perspectives; searched for literature with cultural/economic comparable contexts to Ireland; and covered a timeframe of 1995 - 2004 inclusive.
The key empirical findings are presented first, followed by key policy findings for each thematic heading:
Personal Assistance and Care Issues
Key Empirical Research Findings

  • Recent literature has re-examined the concept of care, focusing attention on the needs of women as care-receivers and care-providers, and on the nature of caring, whose definition is being expanded to encompass emotional and relationship aspects as much as physical tasks. A need to incorporate disabled women as carers into debates and analysis on care was highlighted. In the UK, it has been found that there has been a failure to respond to the personal assistance needs of women in relation to their roles as carers within the household, and in providing help outside the home;

  • The situation of disabled women demonstrates that the caring role is not synonymous with the caring function. Disabled women may require practical and technological assistance and support from others when carrying out caring tasks, including formal services input;

  • In the UK and Northern Ireland disabled women have reported that the way that social service departments have allocated their resources and delivered their services has created a need to rely on family members, including children. In Ireland too, it has been recognised that additional funding for community-based services such as personal assistants, care attendants and home help is required in order to help reduce the need for children and young people to provide care on an everyday basis;

  • In Northern Ireland, the complexities of care within families and over-protection were issues raised in a qualitative study in relation to disabled women's need for personal support and also in relation to women's control over their own income. Partners of disabled women being perceived as carers has had a negative impact on relationships. A lack of support and/or information for partners of disabled people was highlighted. This lack of support means that partners must assume a caring role;

  • The value of someone carrying out the caring role in both quantitative and qualitative terms to both service provider and service user is rarely recognised. There is a danger that disabled women may be drawn into undervaluing their caring role and responsibility if they cannot undertake all the tasks without assistance. Qualitative research in the UK has found that disabled women have denied themselves the practical help they needed so as not to make themselves vulnerable to the charge of not coping.


Key Policy Findings

  • Public policy on care is of huge importance for individual women and men and serves to either alleviate or intensify gender inequalities, irrespective of whether the work is paid or not;

  • A critique of care policies has emphasised the interests of the care recipient as well as the care provider in relation to: choice/quality and rights/obligation; gender equity; putting policies in place that recognise and value care; the demand for and supply of paid and unpaid labour; and the tendency to frame care policies in terms of the costs of alternative ways (in view of the fact that family members may no longer be available) of providing it through the public budget;

  • Systems of care create and maintain gendered inequalities in opportunities and income across the life course, in relation to pay and pensions, and in terms of their effects on women's choices about participation in the labour market and economy more generally. Whether policies provide income, time or services, they are affecting the demand for and supply of care and labour;

  • Women's unpaid work of looking after disabled and older family members has made living in the community possible rather than in residential care;

  • When making cash payments, welfare states make a payment either to the care-giver or to the care-receiver. Time as distinct from money and services is under-developed as a policy response in Europe;

  • If a payment is made to the care-giver, they are likely to see themselves as the one person mainly responsible for the well-being of the care recipient. Furthermore, the most likely outcome of such a measure is to encourage the provision of care in an informal or private setting. Payments for the providers of care tend to be negative for gender equity also as they are rarely generous enough to attract men and therefore tend to confirm women as the most appropriate care providers;

  • Making the payment to the person requiring care may improve the degree of choice available to the care receiver (in that she/he can choose the preferred form of care) and also reduces the public costs of care;

  • Features of 'high quality' care identified from the care receiver perspective were the calibre of the services and/or income compensation; choice of carer and care locus, especially to allow people to remain in their own homes; satisfaction of emotional needs; and understanding that care is embedded in a relationship;

  • Features of 'high quality' care identified from the perspective of the care provider included: an emphasis on the emotional over the physical tasks; the moral value of the work rather than its technical quality; support and recognition; choice for the potential provider about whether to get involved in providing care; 'conditions of work' including payment, hours, support structures and matters of security;

  • Models of good practice exist in relation to personal assistance, e.g. Swedish legislation. Good practice features of this system include choice in selecting a care provider; adequate funding for all the personal assistance costs involved; training/education for assistants; assessment of needs based on a person's total life situation; rights given to relatives to be assistants and provision of short-term stay and relief services;

  • Some of the best-quality programmes are those that have directly involved users and workers in the design and the setting of indicators, performance targets and development of good practice at local level. The introduction of mechanisms for involving users in the development and monitoring of quality is a challenge for the social public services;

  • For mental health service users, a safe and supportive environment, opportunities to talk with workers and other women using the services, promotion of self-esteem, alternatives to medical treatments and support with childcare were highlighted as valued aspects of service provision.


Poverty and Social Welfare
Key Empirical Research Findings

  • Research has shown a clear link between women with disabilities and poverty. Disabled women who are poor in Ireland are most often poor because of their dependence on low levels of disability-related welfare. They are also more likely to be in receipt of short-term disability related payments than men;

  • The literature recognises that someone who is socially excluded is at a greater risk of becoming disabled, and someone who becomes disabled is at a greater risk of becoming socially excluded;

  • The impact of becoming disabled in adulthood on household income, earnings, and expenses has been investigated. Changes occur because an individual ceases employment or changes job, because other household members increase or decrease their hours of paid work to adjust to the new situation, or because benefit entitlement changes;

  • It has been recognised that the responsibility for income support rests with government and there has been an over-emphasis on family/community as supporting structures;

  • Disabled women with intellectual disabilities have been found to be a particularly vulnerable group and services to provide for them in Ireland have been found to be under-resourced;

  • Poverty has been found to be associated with mental illness. Gender-based differences exist in diagnoses of mental health problems with women more likely to experience anxiety and depression. Depression has also been found to be one of the most frequently mentioned secondary conditions among women with disabilities;

  • Costs in relation to personal assistance were found to be the biggest single cost for disabled people who participated in UK research. Substantial additional costs have also been found as a consequence of being both disabled and having parental responsibilities; the benefits system was not sensitive to the needs of disabled parents;

  • Research in the UK and Canada has demonstrated gender differences in eligibility decisions for insurance-based payments relating to type of disability and in particular to mental health disabilities. Women with chronic fatigue syndrome and depression may have increased difficulties in qualifying for a disability pension, due to the stigma and the 'ill-defined' nature of some of these conditions. Disabled women have been excluded from insurance-based benefits because of their work patterns and caring responsibilities;

  • In the UK, Canada and elsewhere the replacement rates of benefits are considered to be too low. The earnings-related nature of disability insurance in the Netherlands means that they have better replacement rates.


Key Policy Findings

  • The lack of an independent source of income for disabled women has been highlighted. In the Irish context, the onset of disability for women who are married/co-habiting has consequences in terms of exclusion from income supports, loss of benefits and the negative effects of means-testing. Eligibility for a medical card is considered to be crucial in meeting the costs of disability;

  • It was recognised that those who acquire a disability early in life and women who have been out of the labour force due to caring responsibilities or who have interrupted work patterns are less likely to have built up entitlement to contributory payments and are thus more likely to depend on means-tested payments;

  • Research in the UK has indicated that many spouses who take on caring responsibilities of less than 35 hours per week when their partner becomes disabled also leave employment. Therefore, it was considered that including 'part-time' caring within the scope of benefits designed to compensate for lost earnings of carers may be appropriate;

  • The carer's allowance has been considered to be only effective for carers who are on low incomes, many of whom are already in receipt of social welfare payments. Furthermore, its uptake is limited by the means-tested nature of the allowance, based on household (usually spouse's) income, which acts as a major barrier to women's eligibility for the allowance;

  • A change in homemakers 'disregards' into homemakers 'credits' to enable women to qualify for Old Age Contributory Pensions has been recommended;

  • The need to develop indicators including intra-household resource allocation, decision making and resource management within households have been identified for inclusion in the EU Survey on Income and Living Conditions (SILC).


Labour Market Attachment
Key Empirical Findings

  • The literature demonstrates that priority should be given to issues relating to the socio-economic position and security of women with disabilities, irrespective of whether this position is based on employment or on social benefits. In the Irish context, many disabled women describe themselves as looking after a home or family and are therefore less likely to acquire entitlement to an independent income through the social welfare system;

  • The instability and disadvantaged position of women with disabilities on the labour market and evidence of gender and disability-based discrimination have been documented in various countries;

  • Disadvantage in terms of disabled women's exclusion from mainstream paid employment, segregation into specific sectors, i.e., stereotypical female occupations including routine clerical and personal service work, and concentration in low-paid, part-time jobs is reflected in the employment situation of disabled women;

  • Research in the UK has shown that women with disabilities were over-represented in increasing numbers working from home, which can reinforce their invisibility or social exclusion;

  • Australian research has shown that women with disabilities are less likely to seek to use employment services and less likely to be referred to rehabilitation services or enter labour market programmes;

  • It was considered that while women and men with disabilities are generally affected by the same barriers to employment, they are not always affected to the same degree or in the same way. Disabled women's caring responsibilities, and the time and energy spent on household tasks combined with insufficient supports affects their labour market participation. Assumptions that women with disabilities are being taken care of by somebody else and therefore don't really need to work continue to persist;

  • UK research has shown that mothers of disabled children are much less likely to be in paid work, and to experience restrictions on their ability to increase their incomes through paid work due to the lack of suitable childcare;

  • Irish research has shown differential employment rates depending on type of disability, with those with sensory disabilities having the highest employment rate while those with mental health difficulties have a very low employment rate;

  • Disclosure of mental health problems to employers was seen as the main obstacle to employment in a small qualitative study in the west of Ireland;

  • In relation to onset of disability, research in the UK demonstrated that the factors associated with leaving employment generally were also relevant to disabled people (lack of educational qualifications, short job tenure, and poor employment protection). Risk factors specific to the onset of disability included increased risk of leaving employment for those with mental health problems, those aged 45 or over and for those in regions where there was low labour demand;

  • The effectiveness of supported employment has been demonstrated in a number of countries.


Key Policy Findings

  • There is insufficient policy development in relation to personal assistance supports in both the education and work environments;

  • A significant disincentive for women with disabilities in taking up employment is the potential loss of the medical card, which is a means-tested support;

  • In Ireland, gaps in relation to social welfare employment supports have been identified. The fact that there is no provision for partial (in)capacity for work is particularly problematic for women with disabilities given their caring and family responsibilities. The option for women of moving in and out of the workforce, full or part-time, and earning income while continuing to receive disability-related payments has been recommended. In addition, the lack of a meaningful assessment of employment potential, the low level of active engagement with those with employment potential and the lack of follow-up on completion or cessation of employment have been highlighted;

  • It has been recommended that 'disadvantage' in the labour market rather than 'incapacity' be used, i.e. one should be able to retain a disadvantaged status, be in paid work and continue to receive welfare benefits;

  • In the UK, it has been recognised that benefits and employment supports in terms of eligibility need to reflect the non-continuous nature of some disabilities;

  • The important role that personal advisers/job brokers play has been recognised;

  • In the UK context, analysis has identified an over-emphasis on employability or making individual disabled people more 'attractive' to potential employers, rather than on making the workplace more accessible and supportive of disabled employees.


Sexuality, Reproductive Freedoms and Motherhood
Key Empirical Findings

  • Research carried out in a number of countries has demonstrated that negative attitudes and stereotypes of disabled women as asexual and dependent have resulted in barriers to accessing sexual and reproductive services;

  • Women with disabilities have indicated that they need more information and resources to help them understand and resolve issues relating to their sexuality. Research in the US showed that disabled women mainly received their information on sexuality from other disabled women and counsellors;

  • Psycho-social factors such as self-esteem, self-image, social status and psychological factors have had a substantial influence on research participants' sexual activity and sexual functioning, not on physical functioning;

  • In the Irish context, sex education and knowledge of concepts related to sexual intercourse and intimate relationships were found to be poorer for younger people with disabilities;

  • Negative attitudes and stereotypes held by service providers and family members can constrain disabled women's reproductive freedoms and rights through the withholding of information, misdiagnosis, coercive contraceptive practices, inadequate and factually incorrect sexual and reproductive health information and lack of access to sexual and reproductive health services;

  • Research in the US, Canada and Ireland has demonstrated that there is a lack of adaptive equipment to support the sexual and reproductive health needs of disabled women.


Key Policy Findings

  • In Ireland any changes to the existing Relationship and Sex Education (RSE) programme should take into account the particular sexual and reproductive issues for young girls and women with disabilities. A sex education programme, where there is active participation by the students themselves so that their concerns may be defined, is the preferred model. Early intervention in relation to sex education for girls with learning disabilities was recommended;

  • Provision of disability awareness training is required for both health and social-work professionals with specific emphasis on the issues faced by women with disabilities;

  • Parents of disabled girls need training and education so that they can support their daughters' understandings of their sexuality;

  • The existing content of personal assistance training in Ireland should be adapted to include sexuality;

  • Information on sexuality and sexual and reproductive health should be provided in a sensitive and comprehensible fashion in accessible formats (print, Braille, audiotape);

  • Research has pointed to the need for a specialist midwife to provide pre-natal and post-natal support for disabled women;

  • Research in the UK and Canada has highlighted the need for increased support for disabled parents including accommodation support, parenting supports and commercially available adaptive equipment.


Communication Barriers
Key Empirical Findings

  • Women with disabilities risk being marginalised by negative attitudes and a lack of disability awareness among health professionals when communicating in healthcare settings;

  • UK research has shown that many women with disabilities have been hindered in communication by the unsuitability of health information dissemination and a lack of alternative means of communicating information;

  • Research in the UK and Ireland has shown that additional linguistic barriers for disabled women from different ethnic groups coupled with a lack of support from social and health services can lead to isolation;

  • Communication for women with disabilities has been shown to be severely impeded by the non-availability of interpreters in social, health and employment settings. Ireland currently has 15 qualified sign-language interpreters available to 4,000 Irish Sign Language users;

  • Assistive technology has significantly enabled women with disabilities to communicate in employment and in their wider social network.




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