(based on inputs from a panel discussion on HIV and stigma held at International Conference on Emerging Frontiers and Challenges in Management and Control of STIs and HIV, organized by National Institute for Research in Reproductive Health (Indian Council of Medical Research) and MGM Institute of Health Sciences --Navi Mumbai):
The word stigma implies a mark or tattoo that was cut or burned into the skin of criminals, slaves, and traitors to visibly identify them as blemished or morally polluted persons. They were to be shunned especially in public places. Stigma is a social dichotomy where social perceptions are divided between us and them.
Stigma could be external or enacted (when it manifests itself in the form of discrimination) and/or internal or perceived (when it results in self stigma/shame). Thus discrimination occurs when individuals are treated differently (discriminated against) by other people due to their social, caste, economic or health status, making them disadvantaged. Internal or self-stigma on the other hand is the way a person feels about oneself harbouring negative feelings of shame and fear of rejection.
HIV related stigma is a process of devaluation of a person living with HIV (PLHIV) by other persons in the form of discrimination/ enacted stigma and by his/her own self through internal/perceived stigma leading to ‘unfair and unjust treatment’ of the person. What Nelson Mandela had said way back in 2002 at the 14th International AIDS Conference-- ‘Many people suffering from HIV/AIDS and not killed by the disease itself are killed by the stigma arising out of it’—holds good even today, despite the wonderful advancements in the control and care of the disease.
Dr Shalini Bharat, Chairperson Centre for Health and Social Sciences, at the Tata Institute of Social Sciences, referred to several studies indicating that levels of perceived stigma (fear or anticipation of stigma) are higher than enacted stigma (acts of discrimination). In one study over 90% PLHIV reported fear of being discriminated. In another study done in Bangalore 37% PLHIV felt they had sinned and 44% felt they had engaged in wrong behaviour. This perceived stigma results in poor uptake of ICTC, non- disclosure of HIV status leading to silent spread of infection, and making married monogamous women at high risk of HIV infection.Up to 30% PLHIV in India have reported enacted stigma or discrimination, with women being disproportionately discriminated---denied right to shelter, property, treatment access, and blamed for partner’s infection. Enacted stigma leads men and women to alter plans to have children, end sexual relationship, modify sexual behaviour, move out of neighbourhood, limit social interaction and/or cancel marriage. Very often PLHIVs are shunned by family and community and get poor treatment in healthcare and education settings.
Sex workers, MSMs and IDUs living with HIV experience multiple stigmas where HIV related stigma is layered over pre- existing stigmas (the onion pattern) of blame, shame, and violation of rights. Concerted efforts are needed to reduce the barriers these groups face in accessing HIV prevention, care, and treatment and support services.
Drivers of HIV related stigma
Dr Balaiah Donta, a Senior Scientist at NIRRH said that, “HIV infection is associated with socially unacceptable behaviours (such as homosexuality, drug abuse, prostitution or promiscuity) that are already stigmatized in many societies. Again, most people become infected with HIV through sex which often carries a moral baggage. Also, there is still lot of misinformation in general public about disease transmission which creates irrational behaviour and misperceptions of personal risk.”
Social and gender inequality, judgemental attitudes towards sex and sexuality and punitive and archaic laws simply add fuel to the fire of stigma.
Mr Manoj Pardeshi, President of Maharashtra Network of Positive People and General Secretary of National Coalition of PLHIV in India (NCPI+) shared his experience when two research scholars who had come to interview him in Pune in the late 1990’s were afraid to shake hands with him, thinking they would get infected. A recent study indicates that even in a metropolitan city like Mumbai 25% general population respondents believed that sharing a glass of water or using the same toilet with a PLHIV would lead to infection.
Even health care workers are not free from discriminating against PLHIV. Manoj narrated another incident of late 1990’s when the medical staff of KEM Hospital Pune refused to treat his bleeding head injury once he told them about his HIV positive status. Although attitudes towards PLHIV have changed drastically in that hospital since then, it is not all that rosy elsewhere. In one recent study only a little more than 10% doctors had correct HIV transmission knowledge and nearly 80% of them were worried about infection at work although more than 70% of them had received HIV training. Nearly 35% of them felt that PLHIV should be treated at different hospitals and over 40% said they would not eat from the plate of a PLHIV.
Reducing Stigma
Stigma reduction is included as a key element in NACP IV (2012-2017).
Dr Donta advocates for a multipronged approach to end stigma and discrimination by “Facilitating the inclusion of stigma/discrimination reduction in HIV and STI strategic planning, funding and programming activities and targeting prevention messages at HIV positive as well as negative people.”
Dr Bharat feels that, “We have to address the actionable components of stigma by filling the information gap to address fear of casual contact/avoidance of PLHIV; influence social attitudes that link HIV to undesirable behaviour—transform gender norms, promote tolerance for sexual diversity, openness about sexuality; and address structural factors by reforming punitive laws and scale up interventions to promote acceptability at community levels.”
In the opinion of psychologist Dr Vijay Thakur stigma can be reduced by educating individuals about why they should not stigmatize, legislating against discrimination, and mobilizing participation of community members. He said that, “Let us talk of being HIV neutral and not positive or negative. Living a neutral life style is being a visible advocate in the fight to end HIV and the stigma that strengthens it. It puts emphasis on humanity of people and not casting judgement because of their status positive or negative.”
The role of counsellors in addressing HIV related stigma cannot be overlooked. But Dr Thakur lamented that although a lot of money has been spent by the government in training counsellors, the quality of counselling is very low for a variety of reasons. There is provision of appointing trained counsellors under NACP IV, but as Dr Bharat remarked, their salaries and working conditions are abysmally poor,
But then as all of us would agree that self- empowerment of PLHIV is the key to dealing with internal and external stigma. The more they accept themselves, the more would society accept them also. And who can do this better than peer support groups? Dr R Gangakhedkar, Deputy Director, National AIDS Research Institute, ICMR urged to utilize the services of peer counsellors who know and understand the disease and its associated problems better than anyone else. This would surely make a big difference in the lives of PLHIV.
Shobha Shukla, Citizen News Service (CNS)
(The author is the Managing Editor of Citizen News Service - CNS. She is a J2J Fellow of National Press Foundation (NPF) USA and received her editing training in Singapore. She has earlier worked with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored and edited publications on childhood TB, childhood pneumonia, Hepatitis C Virus and HIV, violence against women and girls, and MDR-TB. Email: shobha@citizen-news.org, website: www.citizen-news.org)
