HIV activism: ‘It feels more like social work than my day job in adult services’

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I want people with HIV to live free from oppression, & for the NHS and social services to become HIV-neutral in their activities

I was diagnosed with HIV in 1994, a time of moral panic about the condition. The stigma I had internalised about HIV, combined with that of sex and sexuality, made me to hide the diagnosis from family and friends for six years. Consequently, and despite physically managing the condition well with antiretroviral medications, I have battled with depression since. While in mental health recovery, I realised I wanted to work in a helping profession and qualified as a social worker in 2010.

I won’t be the first person from a disadvantaged group who has been motivated to do social work. But having worked in a range of adult health settings since qualifying, it has failed to satisfy me, so in July 2015 I founded Live HIV Neutral – an activists’ working network. Its focus is challenging HIV stigma and it aims to broaden the dialogue about HIV prevention to the mainstream arena; only in such forums will stigma be overcome. It is closer to the type of work that inspired me to become a social worker in that it aims to bring about change in society. As the job did not exist, I had to create it. It is unpaid, so I manage it alongside my day job in adult social care.

Many people ask me why I want to do unpaid activism on top of a stressful job in statutory adult services. The honest response is that if I only did the paid work, I would probably no longer be a social worker. The ever-narrowing definition of social work to include primarily legally indicated tasks, such as safeguarding adult investigations and best interests assessments, is not enjoyable. There is little emotional succour in this work, so I try to redress the balance elsewhere. The faultline between social work and community work is debatable. But, to me, this activism feels more like social work. It is what makes the day job bearable.

The shift from traditional social work roles toward a more refined definition of tasks was catalysed by a desire to define the professionalism of the sector. There is certainly a need to distinguish between social work and other professions. But I am uncertain whether it’s wise or possible to draw clear lines between social work and community work. I consider much of third sector activity to be social work, which is shown by the growing dependence of social services on this sector to provide essential services: for instance, adult social care’s working relationships with Age UK and carer’s centres.

Live HIV Neutral aims to empower people to make changes in their lives, to live free from discrimination and oppression, and to have an equal voice in society. If that is not a social work role then I am not a social worker. And there is a dire need for community capacity building in this area at a time of harsh local authority cuts. HIV services are linked to sexual health services and these remain the responsibility of local authorities in England. Many people fear losing essential resources as ill-informed commissioners decide the future of services they do not understand.

Further local authority cuts are inevitable. Rather than directly fighting them, I believe it is time for HIV and other blood-borne viruses, such as hepatitis C, to be redefined as the responsibility of the NHS. This would ensure essential health services are funded from budgets with more protection. In addition, it would contribute to challenging stigma. Not everyone who has HIV or hepatitis C got it through sex. And many people who did acquire infections via sex report the experience of attending sexual health clinics as oppressive. Some people with HIV choose to abstain from sex rather than negotiate relationships, yet when they attend blood tests they are routinely asked how many sexual partners they have had.

Another casualty of the cuts in many regions is HIV specialist social worker posts. This is concerning many people who have relied on this specialism to overcome the stigma they face. The cut means social workers in generic care teams are now engaging with people with HIV. This risks people with a lack of specialist knowledge trying to negotiate a stigmatised health condition.

I don’t doubt that some people will say things in ways that others experience as stigmatising. But, despite this, enabling a wider social work cohort to develop knowledge about HIV is a good thing. As people with HIV age and manage co-morbidities such as strokes or diabetes, this knowledge base will increasingly be secondary to another specialisms. Perhaps it is via the education of a wider health and care cohort that HIV stigma will begin to be challenged in these professions, in a similar way as we have seen with mental health stigma.

And that is where the network comes in. We aim to take the conversation about HIV beyond the bubble of the HIV sector. We want mainstream organisations, such as the NHS and social services departments, to consider how they can become HIV neutral in their activities. As a social worker in an integrated health and care landscape, this is the challenge I need to take on. So we have developed the Live HIV Neutral pledge and, for World Aids Day 2016, we want to see organisations taking the pledge and telling society what living HIV neutral means to them. We do not want symbolism, we want meaningful action.

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