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I firstly heard the expression ’‘Nothing about us without us” at a meeting of the International Community of Women Living with HIV (ICW), and if you go to the ICW Global website it still runs as a banner in capital letters on the home page . This expression ticks all the right boxes. It uses a ‘us’ language, stressing the importance of collective action, it expresses values of participation and inclusion which are fundamental to real democracy. It is about power being shared equally. It is about voice and control.

With a little bit of research, and a few mouse clicks, I discovered that this expression has its roots in the Disability Rights Movement (DRM). It was the title of a famous book by the disability activist James Charlton. The author first heard it from South African activists from the DRM, who claimed it came from activists in Eastern Europe. So it originates at the geographical margin of the usual locations of power. It is important to remember that the DRM set out to redefine disability as a social construct. Those activists pointed out that people with disability only had impairments, and it was society which was creating ‘disability’ by generating and maintaining barriers. For example disability is created when a bus doesn’t have a system that allows wheelchair access. However, ‘disability’ is constructed by more the physical barriers. The lives of people with disabilities have been limited not just by the architecture of buildings or lack of braille for those who do not see or sign language for the deaf.  The rights of those of us living with disabilities have been also violated by attitudes an preconceptions, by patronizing approaches and institutionalization.

It all sounds very familiar, doesn’t it? Obviously there are many affinities between the disability movement and the movement of people living with HIV. Most of the barriers we face are not imposed by the virus or physical limitations but by society. The enormous advances of medical care mean that many of us have, from a narrow medical point of view, healthy lives. However society’s attitudes and prejudices towards HIV still prevent many of us to live our lives fully, or at the same standard as anybody else. To give some examples, in the past few months I have been in support group were young beautiful women were isolated and terrified to disclose their status to anybody, and hadn’t had a relationship in years. I met a mother who had her children separate cutlery and plates because of the fear of HIV. A few weeks ago a colleague who is also openly living with HIV and has often spoken publicly about stigma, had eggs thrown at her. This is still happening in the UK in 2011. The virus may be undetectable in our blood, but stigma is around us: often reinforced by other social factors, such as poverty, gender inequality and racism. Reclaiming our voice, reclaiming our visibility, is part of our struggle.

‘Nothing about us without us’ has recently moved from being the slogan of those at the margin, fighting against oppression, to being integrated in the mainstream and absorbed in the language of those in power. The current UK government used   ‘Nothing about me, without me’ as the mantra of their plans to restructure the NHS. This time they stressed the individual, ‘Me’ instead then ‘Us’. After much debate the NHS reform bill was passed in parliament. The includes much more localized health boards in which patients, including people with HIV, and other stakeholders, such as healthcare providers, and elected decision makers, will have a place to influence how health services are delivered. So far so good, it is difficult to argue about’ shared decision making’, and there is a wealth of evidence that shows that when ‘patients’ are involved in all decisions and planning of their health the outcomes are better. However it implies that there is a level playing field for all people who access health care. Sadly the reality is that we live in a very unequal world, and I am doubtful that people with HIV, and especially those who are poor and isolated, will be able to seat on those decision making bodies.

At the IAS conference in Rome last July, Louise Binder, an HIV positive woman and advocate from Canada said:’ At school I learnt that if A equals B and B equals C then A equals C. We keep hearing Knowledge is Power. And I know that Power equals Money, so therefore Knowledge equals Money” Luisa’s point was: how can we know our rights and be empowered, without investment? This year Positively UK ran out of financial support for two incredibly successful project s which increased positive women’s knowledge and power to affect decisions. The project ‘From Baby to Pregnancy and Beyond’ , headed by Angelina Namiba, which trained positive women to be mentor mothers, and PozFem UK, the UK network of women with HIV, which skilled up positive women to become advocates were halted by a lack of funds. We are still continuing to run them on voluntary basis, but it is not enough and the work cannot grow. To be effective we need meetings with training, transport, childcare. Without future funding of such projects it is very unlikely that voices of women, will be heard, and therefore decision about us will not be made with us but by those who already have the biggest share of power.

To conclude I would like to propose a slight change of focus in the NHS mantra , I think that as community advocates we should continue using its original form : Nothing about US without US ‘ . We need to recognise the importance of our collective voice and collective action since historically, it is collective action that has propelled change. Hopefully This this conference, will play an important role in creating a collective voice and collective action.

The hard questions we need to ask ourselves as advocates are about who the ‘Us’ in ‘Nothing about Us without Us “ is. We need to question our relationships with each other. Who are we as a community of people living with HIV in the UK? Whose interests do we represent? We are a very divers e group and this is our richness as well as our weakness. Questions of how we can better represent our diverse communities and also how we can be accountable also belong to us at the grassroots as much as to those at the top.

This article was written for Positively Women Magazine as a comment on the UK conference for People living with HIV that took place in London in September 2011.

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