"They were not looked on by the nurses, the doctors. They didn't want to touch them, they were scorned" - L, unpaid carer, Jamaica
A breakthrough research publication highlighting the need to protect the rights of unpaid HIV and AIDS carers will be launched at the Commonwealth Secretariat on 3 October 2011.
'Who Cares, Economics of Dignity' captures the experiences of unpaid carers from across the Commonwealth, who have battled stigma and poverty with little support from authorities, to look after family members, friends and lovers affected by HIV and AIDS.
The book - commissioned by the Commonwealth Secretariat and based on research by Professor Marilyn Waring; Dr Robert Carr; Dr Anit Mukherjee; and adviser on Gender at the Secretariat, Dr Meena Shivdas - has been described as a breakthrough as previous research only focused on the illness.
It covers the experiences of unpaid carers in the household in Bangladesh, Botswana, Canada, Guyana, India, Jamaica, Namibia, New Zealand, Nigeria, Papua New Guinea and Uganda, and calls on governments to make changes to their policies to recognise the rights of unpaid carers and their crucial role in dealing with HIV and AIDS.
The book launch at the Secretariat's headquarters at Marlborough House in London, will be in the wings of a Commonwealth Roundtable on 3-4 October 2011, to discuss the study's research findings and contribute to the development of a framework for the Secretariat's work on social protection. Social protection consists of policies and programmes designed to reduce poverty and vulnerability.
According to UNAIDS 34 million people are living with HIV. Out of this, 12 million people urgently require access to treatment, care and support, and 9 million do not have access to treatment and will die of AIDS.
"They [people with HIV and AIDS] were not looked on by the nurses, the doctors. They didn't want to touch them, they were scorned," said L, an unpaid carer in Jamaica, whose experiences are documented in the book.
The book's researchers found that carers, most often women and girls, believe they have no choice but to provide for their dying loved one, and with this lack of choice their rights and dignity are invisibly breached and replaced by 'capability servitude' - where the carer is bound by their task and charge.
"They were stigmatised and usual community and extended family care cultures broke down. They had no rest, their working conditions were not safe or healthy, their caring didn't 'count' as work, but was a far better standard of care than the state provided," said Dr Waring.
Professor Waring is a feminist economist and public policy expert specialising in the economics of unpaid work.
The late Dr Carr was a sociologist focusing on HIV, marginalisation and the politics of social exclusion.
Dr Mukherjee is a health economist who works particularly on the economics of development, HIV and national policy.
"This research then raises very important questions in the context of the current debate about social protection, where there is significant tension between what the multilaterals and international financial institutions are choosing to see as social protection - almost always as a payment of some kind - and a rights-based holistic approach to social protection that includes specific inputs of health and education, attention to the rights of the carer, and to the legal rights for widows and orphans - for example to inheritance and to land."
Dr Mukherjee warns that the secondary impact is that development is hampered, as women and girls are denied access to basic needs such as food, water and healthcare, and the community is disadvantaged without their contribution to community life.
"In that sense, the whole notion of development as freedom and justice is denied to women and girls who are unpaid carers," he said.
The book warns that the current debt crisis facing the major economies in the world will have serious consequences for funding global HIV programmes. The economic downturn is likely to hit national budgets hard, meaning lower public spending and a larger burden on unpaid carers.
As part of the research into the book an advocacy workshop with Commonwealth parliamentarians was held in Barbados in 2010 to discuss how parliamentarians can play a key, influencing role in changing policy on HIV care.