Article created September 2009

Stigmatisation, discrimination: a health and human rights perspective

By Daniel Tarantola

Stigmatisation and discrimination have in common their nefarious effects on people’s physical, mental and social well being.

If HIV is the root cause of AIDS, stigmatisation and discrimination are the root causes of the AIDS pandemic. Stigmatisation and discrimination have in common their nefarious effects on people’s physical, mental and social well being. At a time when financial resources and political commitment to bring the HIV epidemics under control are mounting, together they constitute the greatest impediments to open access to services, to solidarity and social harmony. in the context of drug use, or the quasi-elimination of mother-to-child transmission of HIV. Yet, the scaling-up of these interventions and even their ultimate effectiveness is constrained by the isolation in which individuals and communities may be forced as a result of stigma and discrimination.

I have attended many HIV strategic meetings in settings across the world and invariably, in all situations, all epidemiological, cultural and political environments, stigma and discrimination top the list of obstacles that have to be addressed to respond to HIV. Prevention interventions have proven effective in reducing risk behaviours and the spread of the virus, for example through safer sex promotion, community organisation and mobilisation, harm reduction in the context of drug use, or the quasi-elimination of mother-to-child transmission of HIV. Yet, the scaling-up of these interventions and even their ultimate effectiveness is constrained by the isolation in which individuals and communities may be forced as a result of stigma and discrimination.

New opportunities for greater access to HIV treatment and care have been created by the plummeting of the cost of medicines, the emergence of simpler therapies and drug formulations, the significant flow of resources and a commitment on the part of health systems and communities to make treatment options real for people who need them. Yet progress is slow, access targets are not met and, invariably, stigmatisation and discrimination keep the majority of people who need treatment away from life-saving services, technologies and sources of support. Stigma and discrimination have become so commonly mentioned as the causes of our collective failure to match needs, demands and resources that they are frequently referred to as ‘S&D’, as if it were a disease, a corporation, or a permanent entity with its own existence, and ineluctable power. Coincidentally, in the English language, S&D stands for Search and Destroy … a sombre analogy …

Abundant empirical and scientific evidence shows that stigmatisation and discrimination are bad for HIV, bad for public health and bad for human rights. On the flip side, they also have in common the ways in which they have catalysed communities coming together to respond to HIV as people who have suffered, and continue to suffer from stigma and discrimination, have learned to create their own counter-power and counter-support groups against social threats to their own existence and survival. The rising empowerment of communities affected by HIV; the growing role civil society is playing in the response to the epidemics; and the increasing recognition by governments globally that the involvement of communities is critical to an effective response: all of these are testimony to the fact that stigma and discrimination can be exposed, challenged and mitigated, if not fully overcome.

Commonalities; differences

So, let us ask ourselves first, what is behind these two words. Stigmatisation is a social practice that brands an individual or group in negative ways and devalues them because of some actual or perceived characteristic. In the context of the pandemic, stigma has occurred because of HIV status, associated behaviors, personal or family history, community affiliation or social characteristics. Stigmatisation manifests itself through blame, shame, judgment, insult, rumours, assumptions, derision and it creates an environment conducive to discrimination. Stigma should not be perceived as a mild form of discrimination: it is the forerunner thereof and takes place when people do nasty things to each other because of fear and ignorance.

Combating stigma is through information, education, questioning community attitudes, explicating and overcoming cultural or religious barriers to inclusion, and an openness to act in concert to alleviate the harms caused by stigmatisation. The role of the World AIDS Campaigns and ongoing communication efforts through civil society networks, the media, in schools, or in places of worship go a long way towards giving HIV a human face, creating mutual empathy, and instating or restating social harmony.

Discrimination manifests itself through neglect, isolation, rejection, harassment and abuse perpetrated by the state, by those acting on its behalf and by non-state actors in their individual or collective capacity. Discrimination is borne out of the compelling human obsession for differentiation and fear of the unknown. The primary purpose of differentiation is to make a complex universe more understandable and seemingly more manageable.

But when differences are not understood, they may be perceived as threats and generate fear. Herd behaviour lends itself to containment mechanisms which may range from avoidance to isolation, exclusion, persecution and elimination. And if the purpose of civilisation is to codify and organize herd behaviours, discrimination, then, is both a violation of human rights and a failure of civilisation.

Combating discrimination requires remaining alert to the multifarious forms through which it is expressed. The empowerment of people living with HIV and communities exposed to discrimination constitutes both best public health practice and progress in human rights terms. This begins with awareness about human rights under national and international law as well as familiarity with public health best practice. The responses to HIV in countries like Malaysia have created much needed space for civil society to play an active role in this response. Enhanced education of service providers about a rights-based approach to HIV, fair law enforcement, just policies and responsive legislation can transform the participation of affected communities into empowerment for the benefit of public health.

Focusing on discrimination

Combating stigma and discrimination requires both recognising their close interaction and distinguishing their differences. In short, to combat stigmatisation requires eliminating its roots in order to alter its manifestations. To combat discrimination is primarily to recognise and eliminate its manifestations in order to uproot it.

I will focus most of this article on discrimination as it represents the most tangible infringements on people’s human right to be treated equally and fairly in the context of HIV. It is a human rights violation and, from a purely instrumental perspective, connotes bad public health practice.

HIV-related discrimination is both pervasive and invasive. Pervasive, it spreads across populations as a result of ignorance, misconception, stereotyping and stigmatisation. Pervasive discrimination is perpetrated against people living with HIV, denying them the right to education, employment, housing or free movement. It is perpetrated against migrant workers, prisoners and more generally, people whose behaviours or lifestyles evoke a risk of HIV infection. The pervasive nature of HIV-related discrimination stems from perceived linkages between a virus against which there are no vaccines and only imperfect treatments, and concerns about socially, culturally and legally reproved behaviours, such as substance use, sex between men, sex work or sex out of wedlock that cast an aura of societal disapproval around those who are seen as both self-inflicted victims and sources of infection.

By association, then, discrimination extends from people who suffer from HIV-related illnesses to carriers of the HIV virus, to those who engage in injecting drug use, same-sex sex, or sex work, and more broadly to those who are regarded as likely to belong or be connected to these communities, to those who care for them and to those, migrants for example, who because of fear and ignorance are assumed to harbour and spread HIV.

Discrimination is invasive: from its roots to its ultimate outcome, it deeply affects the lives of people subjected to discrimination by generating discomfort, humiliation, fear, denial of equal treatment and harmful physical, mental and social impacts.

Discrimination can result in exclusion as a result of policies, laws or practices. It may also result in self-exclusion whereby people who are the subjects of discrimination avoid situations where their rights are denied and their dignity offended. This happens when people living with HIV or wanting to know their HIV status do not seek treatments or stay away from testing services by fear of discrimination.

The invasive nature of discrimination in the world of HIV encompasses the discomfort that affects service providers, including law enforcement personnel and health professionals, when they are faced with a virus they do not fully comprehend, an infection skills or means to manage, and people for whom they may lack empathy. Acting as deterrents to access to early diagnosis, support and prevention and treatment services, discriminatory actions amount to unsound public health practice. They also constitute violations of human rights.

For HIV-positive people and people with AIDS, discrimination arises in the context of restrictions on international travel; barriers to employment; unequal access to education, medical care, or health insurance; and the many issues raised by ‘routinised’ HIV testing, including named reporting, involuntary partner notification, and breaches of confidentiality. These issues are obviously serious, and more than 20 years into the epidemic, they have not been fully resolved.

Discrimination and human rights

Empirical evidence has clearly established that to uproot the pandemic involves attention to civil, political, economic, social and cultural determinants of vulnerability to HIV/AIDS, principles that are spelt out in the Universal Declaration of Human Rights, which reminds us that ‘All human beings … by the mere fact that they are born human, have the right to an adequate standard of living,’ which, among other things, includes a right to the highest attainable standard of health care.

The rights to equality and to be protected from discrimination are at the core of all International Human Right Treaties which translate the inspirational Universal Declaration into internationally binding obligations which, together with other international treaties and declarations, provide states as much as they need to shape their policies and laws and be transparent and accountable nationally and internationally for what they do and do not do to fulfill their obligations in the context of HIV.

Examining the impact of discrimination on both health and human rights, it is apparent that every component of health policies and programs, and every human right can be affected by HIV-related discrimination, and the experience of those who suffer from discrimination can speak convincingly on these issues. Therefore, a rights-based response to HIV and related infections is the right direction for combating stigma and discrimination.

A rights-based response calls for a strong focus on addressing discrimination and more broadly for a comprehensive approach which encompasses civil, political, economic, social and cultural rights. It emphasises building capacity and does not use human rights norms as a way to name violations after they occur but as a way to prevent violations from occurring in the first place and is based on implementation of one or several core rights concepts including non-discrimination, participation, accountability and transparency.

Anchoring HIV strategies in human rights can enrich the concepts and methods used to attain health objectives, by drawing attention to the legal and policy context within which interventions occur, as well as bringing in rights principles such as non-discrimination and the participation of affected communities in the design, implementation, monitoring, and evaluation of health systems, programs and other interventions. A human rights response to HIV also helps the state frame public policies, legislation and
programs which recognise health and well being as the necessary ingredient and the resulting manifestation of societal progress.

Daniel Tarantola, MD, is a professor of Health and Human Rights at the University of New South Wales, Sydney. This article is adapted from a presentation by Professor Tarantola on December 1st, 2007, to the First National AIDS Conference organised by the Malaysian Society of HIV Medicine and the Public Health Physicians of Malaysia in Kuala Lumpur.