HEALTH OF WOMEN WITH INTELLECTUAL DISABILITIES

Reviewed by Kathy O'Grady, Senior Psychologist, Sisters of Charity of Jesus and Mary Services,

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This book is essential reading for professionals in the field, and for anyone wishing to inform himself or herself about this important area. It is more of a fire alarm piercing the subdued night air than a wake-up call to highlight the importance of a proactive approach to health care across the life span of women with intellectual disabilities. Good information leads to good health decisions and this book goes a long way to removing the barriers of apathy and ignorance which have excused inactivity.

This book provides a global perspective; it taps on the research and wisdom of the leaders in research in the field; it promotes an awareness of healthy ageing; it recognises inequities in health service that seriously impair good health and successful ageing; and it prompts the inclusion of the health of women with disabilities on the human rights agenda.

Key themes include:

  • prompting and supporting women to be personally engaged in efforts that reflect and promote their own health throughout their lifespan,
  • highlighting the need for more adult education in healthy choices and healthy lifestyles and, and
  • balancing the importance of self-determination and autonomy with risk management.

This book is courageous in its endeavour to ‘go the road less travelled’ in terms of addressing physical and reproductive health of women with intellectual disability. Anderson examines how age, gender, disability and poverty combine to compound health risks. In terms of health status and trends, Block analyses cultural historical evidence from Brazil and reflects on debates on eugenics, bioethics and genetics. McCarthy further explores how women’s sexuality and personal identity, including gender roles, are marginalised for people with intellectual disability. Parish considers human rights as expressed in personal preferences, by focussing on the socio-political context and challenges of parenting among women with intellectual disabilities.

There is an enlightening chapter on health promotion, the theme being that ways must be found for women to be personally engaged in efforts to promote their own health throughout their lives.

Effective health education for women must be tailored to their distinctive requirements. Flynn and Holland demonstrate effective guidance and education linked to recent health policy directives in the UK. They conclude that successful initiatives will recognise more similarities than differences in the health needs of people with intellectual disabilities. The book is not solely about women; Kerr’s chapter on men’s health bridges the need for further exploration of the health status of both men and women with intellectual disabilities in the twenty-first century.

Following publication of this book, the next step should be to include good practice guidelines in promoting healthy ageing across the lifespan for women with intellectual disabilities, in an instructional or ‘recipe book’ format for frontline carers. If it is true that ‘quality of human life is as important as its length’, then this book is important for everyone interested in healthy ageing. Buy it, read it, refer to it and reflect on it.

Quotable quotes from Health of Women with Intellectual Disabilities:

‘We must continue to remind authorities and society that persons with intellectual disability are entitled to the same basic human rights as all others – and strive to ensure their attainment.’
(Mary Robinson, U.N. High Commissioner in Human Rights)

Yesterday’s experiences fuel today’s ethical dilemmas.’
(Patricia Noonan Walsh, 2002)

‘Traditionally women with intellectual disabilities living in cultures where gender inequality prevails were especially at risk of being excluded from full participation in everyday life.’
(Patricia Noonan Walsh, 2002)

‘Simply put, no country on this planet treats women as well as it does men. The best we can say is that some countries are not as bad as others.’
(Alvarez, 1999)

‘Households comprising a middle-aged adult who has intellectual disability and a mother in her seventies or eighties are common place. A timely challenge for health policy makers is to find suitable ways to support an enlarging cohort of female carers.’
(World Health Organisation, 1995; 6.1.5)>

‘High rates of poverty and extremely low incomes are likely to cause multiple strains that may affect health including difficulty paying for healthcare services that are not fully covered, in obtaining transportation to access medical care, and in having sufficient income for healthful diet supplements, medications, preventative care and medical devices that may be needed to enjoy a reasonably healthy life.’

‘Poverty may be a strong disincentive to independent living…… only one in six women with wheelchairs used an electric wheelchair, which raises the issue of the financial accessibility of available technologies.’

“The extent of psychological and social difficulties reported by participants was unanticipated. This is an extraordinarily distressed group in contrast to women without intellectual disability.”
(Hoorwith et al., 2000)

‘….women with intellectual disabilities have considerable vulnerability – a combination of

  • Poor financial resources
  • Physical disability and limitations
  • Psychological distress
  • Depression and anxiety, but also marked confusion or forgetfulness
  • Difficulty concentrating
  • Difficulty coping with life’s stresses, and
  • Social difficulties

The marked elevated rates of several risk factors for disease and disability strongly suggest that more attention needs to be paid to the social context and in particular to the psychological health of women with intellectual disabilities.’

‘Women have limited access to medical care for mental health problems and also suffer many stresses related to lower socio-economic status.’
(Traustadottir and Johnson, 2000)

‘Women with intellectual disabilities are more likely to be abused physically and sexually than women in the general population; treatment for such problems is often unavailable, inaccessible, or inappropriate..
(Lunsky and Havercamp, 2002)

HEALTH OF WOMEN WITH INTELLECTUAL DISABILITIES edited by Patricia Noonan Walsh and Tamar Heller (2002). Blackwell Publishing, c/o Marston Book Services, PO Box 269, Abingdon, OX 14 4YN; email: direct.order@marston.co-uk. Stg£27.50- ISBN 1 405 10219 5, paperback (First volume in the International Association for the Scientific Study of Intellectual Disabilities Series—15% discount for IASSID members).

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