An important part of the research that is presently being done at the Tuke Institute is surrounding the area of HIV rights and responsibilities. It first seemed a rather straightforward task of examining and weighing how we are responsible for our own wellbeing (think ‘agent responsibility’). But I don’t think I realised the breadth and depth of ethical ground that this topic could (and would!) cover. When research covers a topic such as this, the interviewing process brings out a plethora of experience and challenges. Which makes the whole project all the more engaging, because you quickly realise that the words you are writing are more than black-and-white ink jotted onto a page. They come tied to individuals’ life experiences, and the struggle, pain and wisdom that comes with this. Similar to the practice of medicine, the study of HIV really does affect people’s lives. So examining what the basic challenges are in trying to map out HIV rights and responsibilities can be rather expansive. There have, however, been common themes that have threaded their way through critical analysis and interviews with key decision-makers and opinion-leaders in the field: namely the problematic definitions of rights, the concept of stigma and self-stigma, teaching skilled health behaviours, and the influence of inadequate sexual education on the individual’s ability to get well and stay well. Not only do we need to ‘get’ the right information together. We also need to frame it in a way that can have a real, positive effect on the individual’s life.
But how does how we define rights and responsibilities, this seemingly conceptual sphere of academic banter, actually affect how we live our lives? How we go from sickness to health, and a health that lasts? Funnily enough perhaps, both are connected in this process. For as we examine what my rights are: rights to food, shelter, education, or in the case of HIV treatment, rights to adequate information, medication, rights to the most effective treatments and modalities, we are creating frameworks that are based on something — that ‘something’ being our understanding of what is a human right. And the tricky thing here is that this is a conceptual task with huge practical significance. We need to say, ‘if we’re to do X, then we need to do Y first’. So first we need to define what is essential for the human to live well, or at least in some elementary capacity, to live. Then we can figure out what we are owed, i.e. what kind of rights we need. Or what others are owed. We can’t figure out what our health systems need to provide for their people, or what we owe each other, unless we know what our basic human rights are. So defining rights here is crucial, and yet, as we see in a lot of activism and rights-based research, we often stumble on what may seem to be competing rights. That is, my claim may seem to be staked irreconcilably above or in opposition to your claim. A clear dialogue and ‘mapping out’ of what rights can honestly and realistically be asserted based on a unified definition of human well-being in some primary form is needed before this research can proceed.
Another challenge in researching HIV rights and responsibilities has been unpacking and clarifying the psychological concept of stigma and self-stigma and the relevance to its effects on the well-being of the person with HIV. There are ethical consequences to the stigmatisation of people, as we classify and label others, and as individuals classify and label themselves, we (and they) are engaging in a dangerous game of judgment. You are ‘this kind of person’, I am ‘that kind of person’, and we are therefore different. A game of judgment with an ambiguous measuring device that leaves individuals feeling isolated, hurt and angry, and directly impacting psychological well-being and behavioural adherence to medication. What, why and how would the judgments be used? This is difficult, because while stigma can affect the overall running of public health services (who is deserving, and therefore, who will receive the increasingly rationed treatments?), it can also affect the individual at a profound level in which these same questions turn in on themselves and isolate the individual from themselves (‘I am not deserving and therefore it doesn’t matter if I do things that harm my health because they feel good’), leaving the individual feeling helpless to face the reality of the situation that they are in (more on this in the guest-blog on stigma). So understanding the ethics of labelling and how these judgments are being distorted is key in developing this effective framework that can say ‘this is what I can claim about my health, and this is what I need to do in order to get well’.
Finally, there are the challenges of inadequate understanding of the issues, which then translate into counter-productive conceptualisations of responsibility. This, it seems, could be quickly and easily dealt with through providing access and resources to people who have been diagnosed with HIV, and indeed we find that organisations such as the Terrence Higgins Trust are doing just this. What remains a challenge is therefore maybe not what is being distributed, but rather how people are processing and taking on board this information that is available to them (or if they are). Then it becomes a matter of people actively putting themselves into the narrative that is going on here, owning a part in the discussion and realising that this is actually something that is important to both their own health and the health of others.
As I stated before, these are only a few challenges that have been generated from this discussion on HIV rights and responsibilities. And, with any important topic, the dialogue extends far beyond the short questions and comments that have been left here. However, as we continue to delve deeper and look further, as we continue to bring troublesome hindrances into the light of critical thought and mature discourse, I think that the knots will begin to unravel and we will be able to outline a framework that deals with previous challenges and enables the individual to more effectively weigh their role on their path to well-being.