So we’ve looked at rights. And we’ve examined responsibility. And somewhere in the kaleidoscope of both concepts we find that we need some kind of dialogue— some kind of synthesis that will let the individual with HIV say, I am a person with dignity and rights, but I am also a rational person capable of taking responsibility for the things that I do. And being human is all about this synthesis. About receiving and engaging. The challenge is that, let’s be honest these things don’t play out perfectly. In the normal runnings of life it is oftentimes easier for us to say, I am owed this, rather than taking responsibility. Or maybe, for some, it is the reverse. Perhaps reacting to guilt and stigma reduces the person to say, I am undeserving of any rights; I need to shoulder this whole thing alone. But neither extremes work to the advantage of the individual as they try to get well and stay well.
Why is this? What are the issues if I say that my rights hold the trump card on any responsibility? Here we are saying that what we are owed holds the ticket to our health. If I am given access to the limitless medications that I require, if I am given top-notch health services that address my body, my mind and my social challenges, then I will get better. To a certain extent, yes! We need to have the health services necessary to enable people to get better. We need to have medication for people to take. But this is all still passive. It’s reaching out empty hands without moving our feet forward. And perhaps it comes out of experiences— from feeling like people have not taken these issues seriously before. Or from experiences of stigma, of isolation, of disempowerment, of frustration with people who don’t seem to understand the challenges the individual is facing. But I don’t think it works. Not fully, at least. Because any sustainable action requires movement. Something that takes us from one state of being to another. From being sick to getting well and staying well. And that means that we need to move our feet. Which means that we need to engage responsibly.
But what happens if responsibility then gains the upper hand? What happens when the human being becomes defined by what we are expected to do morally instead of what we are? A shell of a creature with muscle and motion sustained by neither intrinsic worth nor dignity. And this is equally, if not more, problematic. Because this can give rise to incessant demands. You deserve this if you do this. And that isn’t the point either, is it? Instead of addressing the intrinsic dignity of what we are, we receive endless lists of what we ought or ought not to do with our sexual lives, how we ought to conduct ourselves with each other, how we ought to take care of our bodies, our mental health and our social interactions. It seems reductive as well. And unsustainable. And can cause significant challenges if responsibility becomes another series of hoops that we have to jump in order to feel like we are worth something. If you do this, then you will be deserving… But self-worth should be intrinsic and supported by behaviour, rather than something just permitted by behaviour.
So what am I trying to say here? That neither rights or responsibility work? Not really. Perhaps more that we must hold them in a delicate but intentional balance, and allow them to operate side by side, in co-operation with each other. We are endowed with dignity. The Universal Declaration of Human Rights states that clearly: ‘All human beings are born free and equal in dignity…’ (UDHR, 1947: a.1). But we are also endowed with a capacity to act rationally. And with these two things working in conjunction, I believe that it is possible to approach a model of health services that will not only enable the individual to get well, but to stay well. A model of health where we say, I deserve the best possible services. But I also deserve to take care of myself, because my life has intrinsic value. I deserve to rest. I deserve to engage in a community that will support me and take me out of my isolation. I deserve the best possible treatment. But I also deserve to know how to engage in safe sexual practices, so that I can have a health sex-life that contributes to my overall well-being. I deserve to educate myself. And I think the exciting thing is that these two concepts, rights and responsibility, were made to work perfectly with each other. And as they play out in balance and synthesis, they are able to provide a framework that brings the individual from sickness to a state of health that is integrated and therefore sustainable.