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by Luke Sleiter

As I was about to leave for the Urgent Care clinic in a suburb of Minneapolis with what could have been anything from hundreds of harmless non-itching bug bites to a potentially fatal rash from the mood stabilizers I’ve been taking for years, I was explaining to my brother why I hate “going to the doctor”:

I don’t like giving my personal information to someone sitting across a check-in counter with other patients and clinic workers within earshot.

I don’t like being asked to recount my entire medical history.

I don’t like explaining all the medications I take and justifying why I need to be prescribed controlled substances to help with anxiety and depression.

I don’t like stripping down to my underwear in order for the physician to ask me the same questions the nurse just asked me.

I don’t like trying to make the physician feel like she/he is doing a good job when I’m the one doing all the work.

I don’t like receiving even less information than I got from an internet search for my symptoms.

And I don’t like leaving the clinic feeling like nothing has been accomplished

 

Not only were all of these concerns confirmed; but I also left the clinic with some new reasons for why I dislike such visits.

The physician asked me very few questions. He awkwardly told me I could show him my bites “however [I] felt most comfortable” (so I ended up feeling like I was doing a medical office strip tease). I fed him an exhaustive list of reasons I thought I might have this condition and he hemmed and hawed over why he didn’t think it was related to (a) a recent increase in one of my medications, (b) recently starting an entirely new medication, (c) swimming in lake water, (d) spending an hour in a hot tub, (e) a recent cold sore after fifteen years without a herpes simplex outbreak, (f) recent aches and flu-like symptoms, (g) a trip to Brazil a few months earlier, or (h) bed bugs.

Without putting on gloves or getting near me, the young physician suggested I may have hundreds of harmless bug bites of some sort and that I should take pictures of them to watch for changes. If any changes occurred, I was to come back to Urgent Care and start the whole process over again with a different physician.

I left the clinic with no new information, no recommendations for home remedies, and no prescription in case things got worse.  Instead, I walked away with that familiar sense of discouragement, outrage, powerlessness and frustration.

That is why I hate “going to the doctor.”

 

How would I have liked my visit to go?  Check for “Why I Hate ‘Going to the Doctor’ – Part II.”

I met up with a friend last night for some happy hour appetizers at a nice local Mexican restaurant in Williamsburg.  Since we last saw each other in May, he’s traveled to Kenya, attended a family wedding in New England, and twice visited his family in their new home in Georgia.  I, on the other hand, have stayed with family in Minnesota for more than a month, attended a lavish wedding in Santa Barbara, California, and become deeply involved with an internship with the Tuke Institute.  My friend and I had so much to catch up on over cheap margaritas and guacamole.  After we escaped the crowds of hungry hipsters, I was able to finally see his midtown apartment for the first time as we chatted for a couple hours about what we’ve been doing and what our future plans are.

As our conversation shifted to things like food insecurity, the perpetual turmoil that plagues most of the continent of Africa, the rapid urbanization of China and Nigeria, and other such topics white New Yorkers talk about in their high-rent, high-rise apartments, I began to tell him a little bit about the HIV standards we are developing at the Tuke. I explained how Rupert (Whitaker) and I came up with a list of things that people with HIV need, regardless of their location, socio-economic position, race, gender, etc.  I told my friend how when I first started populating the list, I stuck to the safe and familiar–the list that includes mental health services, physical health, and a collaborative team of providers. When I spoke with Rupert, however, he urged me to think outside of that box–to consider that people with HIV want and deserve things like happiness, fun and safety. My friend laughed at that notion and exclaimed, “well everyone wants those things!” as if it was a ludicrous notion to pursue. I retorted that that was the whole point…that people with HIV deserve things like happiness and confidence and freedom from stigma…just like any other person in any part of the world in any situation. Happiness and safety will look quite different in Accra and Santa Barbara and Minneapolis and rural China, but those are the intangible things that all humans should have access to. Those semi-abstract needs are the things that make us human and connected and give us meaning. Without those things, we live fearful, hopeless, and isolated lives.

But the conversation left me feeling worried about these new standards we are setting. If my close friend in my public health program laughs at these ideas, what will my instructor and other classmates say? What will physicians and others clinicians think of these standards? What about policymakers and public health officials? Are these things even worth talking about and addressing when the world’s problems are so big and unmanageable? If we’re trying to address HIV guidelines, are we thinking too far outside the realm of possibility by addressing these issues?

Then this morning I woke up to a New York Times article that my best friend sent me. It was written by one of the children of the mutli-billionaire businessman and philanthropist, Warren Buffett. Although the article was a provocative critical analysis of “the charitable-industrial complex,” it really spoke to me and addressed something very important to my internship.  Peter Buffett eloquently states that:

“It’s time for a new operating system. Not a 2.0 or a 3.0, but something built from the ground up. New code.

What we have is a crisis of imagination. Albert Einstein said that you cannot solve a problem with the same mind-set that created it. Foundation dollars should be the best “risk capital” out there….

Money should be spent trying out concepts that shatter current structures and systems that have turned much of the world into one vast market….

It’s an old story; we really need a new one.”

These thoughtful and challenging quotes truly inspired me and gave me the “hope lift” I needed to continue pushing through the mire of stale thought and poor health standards I have quickly learned comprise the majority of health research and guidelines. I was ecstatic to hear someone speak to the necessity of pushing the boundaries and recreating the way we approach the world’s toughest challenges. Peter Buffett urged me to stop reinventing the square wheel and to start over. If we don’t start from scratch, we make the same unimaginative mistakes and continue contributing to the mess we’ve already made of things. Mr. Buffett reignited in me a flame that was fading. He restored my passion for and faith in what I’m doing and refreshed my memory as to why our work is essential to health and humanity.

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.

Human Rights

 

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.

English: Map showing HIV-1 subtype prevalence ...

English: Map showing HIV-1 subtype prevalence in 2002 (Photo credit: Wikipedia)

 

 

By Karen Foster MSc.

My first blog, describing what I characterised as an epidemic of narcissism in medicine, was written based on my own experiences supported by additional information from friends and colleagues. However, after it was published I received quite a bit of feedback and was asked a number of questions such as how and why this level of narcissism is  so prevalent in the medical world. I did not have answers for these questions, so began the  journey  for  a  better understanding.

 

 

Published by the American Psychiatric Associat...

 

Firstly it would be prudent to formally define narcissism.  The Diagnostic and Statistical Manual of Mental Disorders 4th Edition (DSM-IV) states, pathological narcissism is a pervasive pattern of grandiosity, self-focus, and self-importance.  Furthermore, it goes on to explain that  narcissists are preoccupied with fantasies of their success, of their power, of their own superior intellect and of their beauty. Narcissists demand attention and admiration but can respond with great hostility  to minor threats to their self-esteem.  They often display a sense of entitlement with the expectation of special treatment. They  are reluctant to be reciprocal with favours, they lack empathy, social skills and are exploitative of others.

 

These traits exist on a continuum, ranging from extreme (representing pathological narcissism as a clinical disorder) to less extreme, but still problematic (representing narcissism as a personality trait). Narcissistic personality disorder is often only diagnosed when it is severe and pervasive in the personality, and is causing the individual problems just as it is regularly the case with addictions. However, it would be unlikely that a narcissist would identify this personality defect in themselves, as the nature of the condition is a defence against what may be perceived as threatening feelings via emotional dissociation and denial. This also explains why someone exhibiting rather extreme narcissistic symptoms never self-seeks psychological treatment until this is imposed on them after their actions have necessitated some form of intervention. Treatment is rarely successful.

 

But don’t we all have at least some form of narcissism? Many specialists, including Freud, say that yes, we do have a certain dose of it and that it’s actually healthy. This is referred to as healthy ‘narcissism’ which is characterised currently as an important ingredient of self-esteem and a factor in resilience to social stresses like marginalisation and actually enables us in self-efficacy.  It aids us in functioning effectively. This constitutes realistic self-interest, helps us achieve our goals and gives us the ability to form relations with others and our environment.  Those with  a healthy amount are usually talented, capable and functioning well in society. Therefore, it  would be logical to assume that we all know people who are represented on this narcissistic spectrum.  In fact, we all would have a place somewhere on it, it is the extent to which the level of narcissism negatively affects our lives and the lives of those around us which is of concern, with the absence of empathy regarded as the biggest problem.

 

So far, I have given a formal explanation of narcissism explained how we would all be represented somewhere on a spectrum.  However, when applying this back to physicians, it may be necessary to look at this from a different perspective, as it’s unreasonable to suggest that  all people who enter the profession of physician are born with or inherit their unhealthy degree of narcissism during development.

 

Robert B Millman, Professor of Psychiatry at Cornell University, has coined the phrase, “acquired situational narcissism”. This is a form of narcissism that develops in late adolescence or adulthood, brought on or “triggered” by wealth, fame and the other trappings of celebrity and has the same symptoms as “narcissistic personality disorder”, except that it shows up later.  This is very often triggered by the experience of “power”.  Basically it is a dysfunctional response to success.  Here it is the environment that creates the narcissism, where there may have only initially been a trait, or as previously stated, a healthy and functional amount of narcissism. This Millman described as reinforcing pre-existing, latent personality or identity traits.

 

John Banja, whom I referenced in my first blog, also spoke of how reinforcement can create an identity,  but he used it within the context of medical narcissism, stating that these inherent traits are reinforced during medical (physician) training.  He believed this was a defence mechanism against loss of self-esteem and thus making them reluctant to disclose any error on their part to their patients. This has been evidenced in the likes of Professor David Southall and Professor Roy Meadow. Southall, as reported in the newspapers, falsely accused Steven Clark of murdering his two children, and was subsequently charged with professional misconduct and “struck off”.  Meadow appeared as an expert witness in Steven’s wife Sally’s consequent murder trial and the GMC also struck him off the British Medical Registrar for giving “erroneous” and “misleading” evidence which lead to her conviction and imprisonment. Narcissism entitles one to act outside one’s area of expertise, and both of these physicians were identified as having done so, with great negative consequences.

 

Oil on canvas

 

Therefore the education of physicians needs to be considered here also.  Many of these physicians have been through the public school system and many are also graduates of Oxford or Cambridge.  Again, speaking to friends and colleagues who have had this educational experience, it has been explained to me that from the time one starts their education, to the day they graduate, they are repeatedly told by those responsible for their education, that they are special, the most intelligent, and above all else superior to everyone else, just by virtue of being educated at Oxbridge.   Referencing Banja again, any narcissistic traits may well be reinforced during this education and then subsequent medical training. Speaking with a number of physicians, I have been told that their supervising physicians expected them to be errorless and later after their training had finished and they had officially qualified, their patients also expected them to be perfect. Therefore the expectations placed on the potential physicians are great enough to develop  an  idol like persona, and then to effectively create “acquired situational narcissism”.  The same triggers that Millman refers to such as wealth and the godlike role society gives them can be applied in a  very similar way.

 

So, combining the clinical diagnosis of narcissism with Banja’s theory of medical narcissism and lastly Millman’s explanation of acquired situational narcissism, it would be reasonable to predict from these and the journey a physician takes to attain his education and then the position society places him could create an epidemic of narcissism in  medicine.  This may  explain the behaviour of physicians as they come to believe that one ought never appear ignorant, uncertain, hesitant or wrong. So when this professional self-image is challenged, these persons are tempted to withdraw, or become hyper-defensive or just plain arrogant. Demonstrably,  when presented with a patient with knowledge they display the condescending and arrogant attitude as previously discussed.  These are role-related, identity-based behaviours and can be very concerning when these issues negatively affect the health outcomes of their patients.

 

My last blog ended with the call for patient-centred medicine, and this extrapolation from that blog  is the same reason why we need to promote this. Patient-centred medicine’s emphasis is on groundedness, that is that the treatment and care should emerge from the patients’ needs.  What we currently experience is physician-centred medicine which advocates that a physician should work autonomously, without question nor challenge, as they are the only ones that have the necessary knowledge and understanding, and this is often to the patient’s detriment.   This is a reflection of paternalism and this subject has been widely researched and written about by Angela Coulter who calls for a removal of paternalism in medicine. She states that the public’s expectations are changing and that patients are now wanting to be involved in their care, as although it is acknowledged that physicians are well informed about diagnostic techniques, the causes of disease, and prognosis etc, patients are the experts when it comes to their own experience of illness,  their social circumstances, their own habits and their behaviour. Therefore the current physician-centred medicine model that we presently experience creates and maintains an unhealthy dependency on a draconian and narcissistic model that desperately needs to be changed.

 

References:

 

Millman, B. (2001, December 9). Acquired Situational Narcissism.  The New York Times.

 

Banja, D.  (2005), Medical Errors and Medical Narcissism: Jones and Bartlett Publishers, Inc .

 

Coulter, A. (2002), The Autonomous Patient: Ending Paternalism in Medical Care: The Stationery Office

 

 

 

 

If we take the current approach to rights and responsibilities in HIV, what exactly are the outcomes for the individual? And is it achieving the aim— to get people well and staying well? HIV rights and responsibilities is currently facing a schismatic reality— a post-Denver principles era grappling with the rights owed to the individual; a time in history that sees regress into previous paternalistic frameworks of health service delivery.  We feel like we know what our claims are, but we struggle to apply them to this model of health service.  Or perhaps, the system of getting the diagnosis, then receiving the prescription does somehow tick the boxes of rights, but leaves us with untrained muscles of responsibility.  Of my ability to actively pursue my own physical health.  But whatever the case may be, recent statistics (the Health Protection Agency December 2012 report) show us that something is not quite right.  Somehow the link between the current framework of HIV rights and responsibilities and the well-being of the individual is broken.

What seems to be going wrong? If we look at a general (and, albeit, simplistic) overview of current treatment for HIV, we see this: The individual is tested diagnosed, given medication, perhaps options of support and internet services, and is sent home to commence recovery.  Information is downloaded, though not essentially retained, and the person is left to process the information in the solitude of their homes.  And threads of stigma, self-stigma, weave their way into the equation, potentially creating a dangerously isolating situation for the individual.  Because they were diagnosed, then ‘treated’, and therefore expected to get well.

But the problem is, as many activists have pointed out, that this is a reductive method of seeing the health of the individual. It is incredible that antiretrovirals are able to enable longevity and wellbeing, but filling a prescription and diligently adhering to it is just one part of the equation, because we are more than just a physical body.  And that is if we are able to adhere to the strict guidelines of ART (antiretroviral treatment) consistently amidst the fluctuating busyness of life.

I think that the current model leaves us with some serious questions— ethical questions rooted in the underlying definitions of health out of which our health services operate.  Is our right merely a right to access medication? Or do our rights encompass more than this, because we are looking at the individual as more than just body.  If we really are a biopsychosocial being, do our rights then need to be extended to include access to psychological and social tools to enable wellbeing?

This is a fascinating study— and I think that HIV is in this case an extremely effective case example that can be used to assess our general understanding of health-services and conceptualisations of what it means to get well.  If we are just bodies looking for medication, then this current approach could be effective.  And indeed it would be remiss to not highlight the profound gift of being able to access medical services that provide medication.  But there is also something lacking in this current approach, and I think that this is worth discussing further.  Because we want services that see the whole person, and enable that whole person to get well, resulting in, I would hope, a greater likelihood of staying well in the long run.  And it’s for reasons like these that I wonder if we shouldn’t probe a little deeper and see if there is more that can be done, more responsibility assumed by the individual, while putting effective supports in place to enable this responsibility.  These supports being psychological services such as counseling and group services, social groups that speak candidly about sex and rights and responsibilities, and a system that comes alongside the individual and enables them to pursue their own well-being in community rather than in isolation.  Encouraging this model would, I hope, create a more deep-rooted and holistic method of health that can enable individuals with HIV to get well and then to stay well.

Estimated HIV/AIDS prevalence among young adul...

Estimated HIV/AIDS prevalence among young adults (15-49) by country as of 2008. Nederlands: Geschatte HIV/AIDS-verspreiding onder jonge volwassenen (15-49j) per land vanaf 2008. (Photo credit: Wikipedia)

So we’ve discussed what responsibility is.  But let’s look at the reality of the world of a person living with HIV.  We’ve mentioned a few responsibilities that may emerge as a way of ‘owning’ our own process of getting well.  But how does this contrast with the current reality of individual living with HIV?Some activists have suggested that current health-service paradigms pose challenges to taking responsibility for our own health.  In a health system that asks the sick to come for assessment, then dispenses medication as the ultimate answer to the illness, one can wonder where there is room for the individual with HIV to take any personal responsibility.  Maybe in adherence.  But are we just responsible for this? Surely there is more to this process! In any other situation we have to address all the dimensions— how do we contract the illness? How do we pass it on? How do we ensure that we get better? How do we stay better? And this may become more uncomfortable, because it says to the individual— Listen, yes you are ill, but there is still a lot that is in your own hands.  There’s a lot of power that you can exert to control and, perhaps, change your (or other’s) health.  Which means that responsibility assumes that the individual has a lot of stuff within them that they can use to stay strong and to develop strength in a situation that shifts like unsettled sand.I think that empowerment— the positive kind that has the force to change circumstance from something within the individual— is central to responsibility.  If we take responsibility for our lives, then we must somehow be empowered to do so.  But if we assume that our responsibility for our health ends with stepping into the health provider’s office, are we actually empowered? Or are we actually abdicating responsibility through abdicating power to the provider? Yes, you know what is best for me.  But isn’t it more complex than this? Shouldn’t our response be deeper, more challenging?  These are, after all, my needs— my health— that is being addressed.  And so what does my health require? My physical health. Yes medication, but also a proper diet and exercise.  My mental health.  Perhaps counselling, relaxation.  My social health. Organisations and networks that come alongside and support the individual and their family, activism that pushes for a society free of stigma and wrong presuppositions, of unjust criminalisation. The list continues on.

This is obviously a hard topic, because there has to be a balance.  Yes, we are empowered and need to step into this empowerment through acting responsibly.  But we are also human beings that have fundamental rights, and we don’t want to set up an impossible scenario where the individual is constantly fighting.  The point is that we want people with HIV to get well.  And this requires a balance between rights and responsibility.  And this balance presupposes that responsibility must inherently come alongside rights.

English: Diagram of the HIV virus.

English: Diagram of the HIV virus. (Photo credit: Wikipedia)

 

What is responsibility? We toss this word around— as children we are taught to grow into this, as adults we assume we are this.  But what does it mean to ‘be responsible’? It must be more than just a ‘thing’ that we become, an adjective that we climb into at a certain age, after a certain life experience.It seems that there are different kinds of responsibility: Parents are given responsibility for their children, teachers for their students.  There is an intrapersonal responsibility to someone else.  Me to you, you to me.  But we are also responsible for ourselves.  Isn’t this one of the key features of ‘growing up’, stepping into an ownership of self that somehow makes us have to start looking out for ourselves.  Our parents are no longer the ones that will feed us, house us, or take us to our sporting events.  We have to do this ourselves.  I am responsible to myself.

HIV/AIDS prevelance worldmap

HIV/AIDS prevelance worldmap (Photo credit: Wikipedia)

And so being responsible means looking inwardly and outwardly.  Watching out for the wellbeing of ourselves and others.  But what does this look like?  How much ‘watching out’ do we need to do? Philosopher Levinas suggests that the responsibility that we have for one another is infinite— we can never cease to be responsible.  It’s like an eternal burden that we have to bear for the other person.  And a burden that we have to bear for ourselves.  Which can seem like some kind of chain rather than something that can set us free.But I think that it can actually be the ticket to a lot more freedom.  Because if we are responsible, then it’s us approaching the situation, saying, ok what is going on here? How can I act in a way that gives me power over what is happening outside of me? An important example of this is looking at responsibility in HIV.  Let’s say we are responsible for others— for helping them to get well and to stay well. What does this look like? Ensuring that we are educated on the issues that people are facing, examining whether we use stigmatising language, pressuring health services to provide accessible treatment that can effectively treat all populations regardless of cultural backgrounds, engaging in activism that addresses criminalisation and misrepresentation of facts about HIV.  And what about responsibility for self? Often this seems to be forgotten in the sea of ‘otherness’.  But if we don’t ensure that we are taking responsibility for ourselves, how do we propose to get well and stay well? Is it enough to demand rights to medication and health-services? Perhaps in part.  But I think responsibility for ourselves is more widespread, if we really want people to stay well in the long term.  Maybe it means making sure that we are exercising, eating well, receiving the appropriate psychological counselling and support we need and engaging in safe sexual practices.

I think that it is easier to look at rights when we are talking about these kinds of issues, because rights are something we can claim.  We can say, this is something I am owed.  But responsibility puts the action on me and I become the agent of change.  And this becomes much more challenging because it requires looking inwardly and outwardly and saying— ok, let’s look at the facts. And let’s look at where I stand in the middle of it all and what I need to be doing for things to change.  Which is hard but essential if we are to really claim ownership of our own lives.

The past few blogs have tried to build concentric circles around one central issue— HIV rights and responsibilities.  But as all of these blogs continue to explore different facets of this topic, building a framework that enables us to critically approach what really is going on here, we need to look at the raw materials.  What are we using to construct this project? And do we know what these things that we are using actually are? In this blog, I will explore the complicated world of rights and just how important (and difficult!) they are to define.What is a right? This question has made philosophers scratch their heads since the time of Locke.  MacIntyre suggests that they are just ‘socially established sets of rules’ that only ‘come into existence at particular periods and in particular social circumstances’ (1981:67).  But the United Nations seem to think that they possess more universal significance than this.  Which is why they created an entire Charter on Human Rights that declares:All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood’ (UDHR 1948:a.1).But then the rubber hits the road and the universal definitions that float nicely in a theoretical haze threaten to lose their significance in the practicality of the individual person’s experience.   And with this, my own individual set of life goals and circumstances, my own community, my own cultural expectations and pressures.  Sometimes these claims of individuality may seem more significant than any common ground.So every human being has a set of rights that are owed to them, based on their status as human.  But what do these rights look like? More specifically, when looking at health, what is a right to health? The World Health Organisation (WHO) states that ‘the enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being’.  So this means what, practically speaking? I believe this includes a right to access health services that make people well and help them to stay well. A right to medication, yes perhaps, but more than that: A right to health in a broad sense that folds into an understanding of human beings as physical, social and emotional beings.

We find ourselves looking at the same challenges as we examine HIV rights and responsibilities.  Because suggesting that there are basic rights for those with HIV suggests that there is a specific set of debt that is owed, and that there is someone or something who ought to be able to fill this debt.  But what rights are owed? This requires defining what it is to be a human being— what it is to be able to live a basic human existence with dignity.  And these are big questions.  Almost impossible questions.  But we are given tools to help us out— a set of rights that are common to all human beings and that can be used to show us what we can claim as ours.

Should these statistics make us concerned about what’s happening with HIV in the UK?

Should these statistics make us concerned about what’s happening with HIV in the UK?

Should these statistics make us concerned about what’s happening with HIV in the UK?

Should these statistics make us concerned about what’s happening with HIV in the UK?

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