Why the fight against HIV starts within us

We may no longer herd people with HIV/AIDS into colonies, but economic policy still leads to destitution and despair. That's why activist group ACT UP UK have reformed.

Dan Glass
6 January 2015
 ACT UP London.

ACT UP protest with crap outside UKIP's London office. Credit: ACT UP London.

In 2014 activist group ACT UP UK re-formed to help put HIV/AIDS back on the political agenda. Cuts to services, rising transmission levels and the general mistaken belief that HIV was resolved in the 1980s have led some to name this time the 'HIV Second Silence'. 

To combat this, ACT UP recently occupied the front of the Home Office in a huge dance-a-thon, protesting against the move towards doctors enforcing border regulations. Dressed as doctors stripping off to become police, we demonstrated against two new clauses in the Immigration Bill which will introduce charges for migrants accessing the NHS. And most recently, our London chapter dumped half a ton of fresh and steaming crap on the doorstep of UKIP’s London office, protesting anti-migrant statements on HIV by leader Nigel Farage and other members of the party. 

Universal access to healthcare means that everyone benefits. If access is given based on citizenship, conditions go untreated, infections spread and costs soar. We challenge a two-tiered health system based on migration status. Disease doesn’t do borders, and neither should we. 

On top of this, we ramped up the pressure for the Government to support Pre-Exposure Prophylaxis (PREP), the highly effective new HIV prevention tool that remains unavailable on the NHS, despite dramatically reducing infections. In Paris, ACT UP put a giant condom on the obelisk, protesting against the lack of HIV/AIDS government research and medical support.

HIV is still a major public health problem. The number of people in London diagnosed with HIV acquired in the UK has increased from 660 in 2001 to 1,480 in 2010. Approximately one in every 200 Londoners aged between 15 and 59 lives with HIV - a rate three times higher than any other region in England. The overall prevalence in the UK in 2013 was estimated at 2.8 per 1000 across all ages, or around 1 in 360 people. 

As an HIV/AIDS community development worker, I am always amazed by the difference between the public and the private face of HIV, between what shiny NGO propaganda says and the reality on the ground. We may no longer herd people with HIV/AIDS into colonies, but physical, emotional and psychological imprisonment is still rife in our mainstream economic policy making.

There is a growing gap between the grandiose intentions of HIV policy makers, and the impact on the ground. Cars get sleeker and the offices slicker. Cut-throat tactics and ‘hostile takeovers’ of other HIV groups are not only enabled, but lauded as model conduct - a similar pattern to the NGO-industry at large. Now most grassroots HIV groups have been eclipsed by organizations with a more corporate approach.

While many factors contribute to community-based organisations going under, it's hard not to be suspicious at their closure when tangible radical successes are being seen on the ground. Two years ago in Scotland, Body Positive Tayside closed its doors, ending a network which at one time had over half a dozen groups and a national co-ordinating body. The notable exception is the HIV-AIDS Carers & Family Service Provider Scotland, which continues to support people and families on a self-help basis with no public or charitable funding, and little recognition from other HIV agencies.

In the UK, the austerity policies of the current Government are making a bleak situation even more grim. HIV is seen as a ‘soft target': thousands of people have had their benefits removed. Government figures show that a shocking 44% of people with HIV who have completed a Work Capability Assessment have had their support cut off. Charities warn that this is causing destitution. While this goes on, UNAIDS state that their goal is to "build an HIV/AIDS free generation".

One problem is that policy-makers detach economics from the political situation that causes inequality. This can only spell danger. A less discussed tragedy, however, is that as those of us living with HIV or AIDS are effectively excluded from society, we often internalise this blame and guilt. Many of us begin to believe we not good enough for anything. Can we put a price tag on the increasing number of HIV/AIDS suicides? We could talk about the economic cost of loneliness, but this misses the point. You can’t quantify human tragedy. Scarcity-based economics does not account for qualitative value.

This is why structural analysis is a crucially important tool for awareness-building among the poor and oppressed. It unveils the forces protecting power. It helps us to understand the hegemonic gridlock behind the marginalisation of the HIV community, asking: 'Have we ever seriously asked what psychosocial processes look like from the point of view of the dominated instead of from that of the dominator?'. When the perspectives of oppressed people(s) are articulated, we can begin to act in the context of our own communities, take our history into our own hands and move forward.

Understanding the values of our society and the dominant values, beliefs and myths involves critical questioning. What blocks the people’s will to act for or against something? Who are the heroines and the villains behind the prolonged, tired story of the AIDS crisis?

But to become aware of the problem helps us both to analyse it and seek out the alternative solutions which ultimately transform us, leading to our liberation. The HIV/AIDS community has a rich tradition of resistance – including groups like ACT UP – and exposing the financial terrorism behind the AIDS industry. For years, HIV activists have directed our anger toward governments, drug companies, the media, religious organizations, and homophobic politicians in positions of power at all levels of society. 

Developing our critical consciousness helps separate the false hopes, such as the unreachable 2012 UNAIDS goal, from the genuine possibilities for transformation within our communities.

Today the UK is the 7th richest country in the world, yet the most unequal in the developed world. It's often said that the state of healthcare is a key indicator of a nation’s development: today David Cameron is trying to dismantle the NHS, with HIV/AIDS care greatly at risk. 

Only social justice can undo the damage caused by inequitable service distribution, where the richer you are, the healthier. Without the acknowledgement of the materialistic gap between the rich policy makers and a poor disproportionately affected by HIV/AIDS, there will be no commitment to action for change. We know that finding a HIV/ AIDS cure for all in our lifetime is too risky to leave up to the United Nations. That's why the battle also starts within ourselves.

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