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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

OPINION: Analyzing Stigma

Many aspects of stigma remain unknown, and more research is needed.

Most people have a sense of what stigma is, but if asked to define it, many would struggle. Often it is described as discrimination, 'negative attitudes' or a 'discrediting feature'.

From a scientific point of view, discrimination is either an outcome of stigma or, more commonly, one form of stigma, called 'enacted stigma'. Importantly, stigma is nowadays recognized to be a social process, rather than a characteristic of a person or group. This implies that stigma is dynamic and can decrease or increase depending on social and personal factors.

We can distinguish three main components of stigma: perceived (or felt) stigma, enacted stigma (or discrimination) and internalized (or self) stigma.

Perceived stigma refers to a perception or fear of negative attitudes in society in general or in a particular group such as health services personnel or followers of a particular faith. Note that this perception is often shared by people in a given community, but is not uniform.

Enacted stigma includes any action or behavior that acts out a negative attitude toward a person or group. This may be something very obvious and severe, such as dismissal from a job on account of leprosy or HIV, or it may be more subtle, such as gossip or breaches of confidentiality.

Internalized stigma describes the situation of a person whose self-esteem has been eroded by prolonged exposure to negative attitudes or discrimination. People who internalize stigma begin to believe the negative stereotypes others have of them. They may start to feel bad and even blame themselves for having the condition.

"Leprosy is one of the oldest stigmatized conditions known."

There is a misunderstanding that the term 'selfstigma' is used to blame the people affected for the stigma they experience. This is definitely not the intention. Internalized stigma is a psychological consequence of public stigma and discrimination and is often accompanied by depression and anxiety.

Change agent: Ahmad Zainudin of PerMaTa, Indonesia

Stigma and human rights

Human rights are universal. The UN Convention on the Rights of Persons with Disabilities adopted in 2006 has applied these concepts more specifically to the situation of persons with disabilities. Enacted stigma clearly violates the rights of persons or whole groups. Even gossip or name-calling violates the right to dignity. Other rights that are commonly violated include the right to access to justice, respect for privacy, respect for home and the family, participation in political and public life, being included in the community, personal mobility, education, and the right to health.

Leprosy is one of the oldest stigmatized conditions known. However, research has shown that many consequences of stigma for individuals and their families are not unique to leprosy. This is also true for the problems stigma causes to public health and rehabilitation programs. For example, people with mental illness, HIV/AIDS or epilepsy often suffer similar consequences of stigma to those suffered by people affected by leprosy.

Many aspects of stigma are still largely unknown. This is true for determinants of stigma . why are some people strongly stigmatized, while others with the same condition are not? And also for interventions . what are the most effective interventions against the various forms of stigma and discrimination? What can we do to make people less susceptible? How can we best empower people? How can we use rights-based approaches in stigma reduction?

Given that the impact of stigma on people with different stigmatized conditions is very similar, would joint interventions for different target groups be effective? Much more research is needed to answer these questions. Such research should be participatory, involving people with personal experience of leprosy (or other stigmatized conditions) at every level. Even better, people affected should be empowered to initiate and lead such research themselves, where necessary asking assistance from experts.

There is accumulating evidence from several disciplines, including leprosy, that people affected can be very effective as change agents to diminish stigma. However, serious and sustained efforts are needed by programs and organizations to involve them in a meaningful way and build capacity to increase their involvement as true partners in this process in future.


AUTHOR: Dr. Wim H. van Brakel

Wim H. van Brakel, MD MSc PhD, is head of the Leprosy Unit at the Royal Tropical Institute and Assistant Professor for Disability & Development at Athena Institute, VU University, Amsterdam, Netherlands.