What can we learn from the ways that persons affected by leprosy resist stigma?

Ask yourself these questions:

Have you ever faced discrimination?

Have you ever experienced stigma?

Have you ever received a medical diagnosis that felt embarrassing or shameful to you?

Now ask yourself these questions:

How did your respond to these experiences?

What coping mechanisms did you reach for?

Did you resist these feelings or the comments to which you were subjected?

What can we learn from the ways that persons affected by leprosy resist stigma?

If you were diagnosed with leprosy today, the sad truth is that you would likely experience stigma and discrimination. Because of this sad truth, persons affected by leprosy have long been learning how to cope with, avoid, and resist stigma and discrimination. The list of questions you have just considered are a fact of life for many of the millions of people who have received a leprosy diagnosis. But what can we learn from this?

This is the question put forward by Dr Arianna Bobba PhD, whose hypothesis was that people affected by leprosy regularly activate and practice strategies to cope with and resist stigma, which enhances their agency and resilience towards leprosy stigma and discrimination. In this article, we are going to look at what Dr Arianna has learnt (you can read the full thesis here).

The study methodology

The study took place in Cabo Delago, Mozambique
361 people responded to a questionnaire, 75 of whom had lived experience of leprosy and 286 were household/community members
22 interviews took place with persons affected by leprosy
15 interviews took place with health providers, NGO representatives, and ALEMO, an Organisation of Persons Affected by Leprosy
Two focus group discussions took place

Photo credit: Ricardo Franco

Before we go any further, let's understand what we mean by stigma…

There are three different ways of understanding stigma
Anticipated, Perceived, Felt	Internalised self-stigma	Enacted
This is the fear or expectation that you will experience negative attitudes and practices in your society.	This is the stigma you might apply to yourself because you feel negatively about yourself. You might feel shame or guilt.	This is the experience of discrimination at a structural or public level.

Stigma is the process by which certain groups are marginalised and devalued by society because their values, characteristics, or practices differ from those of a dominant cultural group.

Link & Phelan, 2001

Stigma is the process by which the reaction of others spoils normal identity. Popular conceptualisations of stigma commonly include components of labelling, stereotyping (attaching negative evaluations to an ascribed label), and prejudice (endorsement of negative stereotypes)

Goffman, 1963

Photo credit: Ricardo Franco

What does stigma look like in Mozambique?

Religion and culture

This study revealed that being diagnosed wtih leprosy is often perceived as a punishment for theft. Equally, there are some parts of Mozambique where it is believed that ‘if a man came into contact with a woman’s menstrual flow, he would contract leprosy.' Often these cultural beliefs are tied up with religious beliefs; contracting leprosy is divine will and God punishing you.

On top of this, language plays a significant role in the perception of leprosy. There are words in Mozambican culture for leprosy which are considered highly offensive. How these words are used can have a big impact on persons affected by leprosy.

Healthcare

How a person is treated in a healthcare setting influences how that person experiences stigma, especially if negative experiences start from the first diagnosis. The evidence shows that healthcare workers still use stigmatising language and this has a significant impact on how individuals perceive the condition.

Of those surveyed, 26% of respondents expressed fear of discrimination when seeking medical help. Leprosy patients also receive poor-quality services, including incomplete physical examinations. Some healthcare workers also show reluctance to touch patients. Often these issues are related to a lack of understanding among healthcare workers.

Family and community

This study, perhaps unsurprisingly, revealed that stigma prevalent in communities had a direct impact on persons affected by leprosy. Many individuals experienced profound feelings of isolation, limitations in their daily lives, and a persistent sense of never being fully cured.

The experience of stigma in the community is influenced by whether or not leprosy has caused visible impairments. Dr Arianna spoke to two brothers, one of whom had no impairments and one of whom had significant impairments across eyes, hands, and feet. The brother with impairments experienced severe social and economic repercussions whilst the brother without impairments experienced almost no change in his life.

On the use of language:

“It depends on how the person is speaking; the same word can have a meaning that doesn’t carry a negative connotation, or it can be accepted as a common expression. It’s not the name itself that has a negative connotation; it’s just the name of the disease. It becomes pejorative depending on how people treat and refer to the affected individuals.”

On leprosy as divine will:

“I often say that it is not sexually transmitted; it is caused by tiny creatures. Even if you touch someone with leprosy sores, the disease does not affect you; it affects you on its own, by the will of God, only when God wants you to catch it. This is God’s doing... if God doesn’t want it, you won’t catch it... if you do catch it, it’s destiny”

“Prevention is not an option, because it is divine; you can take care of yourself as much as you can, and do everything possible, but if God has destined that you are to have leprosy, you cannot escape it.”

On discrimination in healthcare:

"In the health unit, it is common for a person affected by leprosy to be treated separately from other patients at the end of the day, after everyone else has left."

On discrimination in the community:

"They [my friends] didn't stay with me any longer. They believed that God had abandoned me'. Stay there; do the work; get cured, and maybe you'll be one of us again.' So, they didn't worry about staying with me; they would always bring food and leave."

On discrimination in the family:

“After I informed him [partner] about this disease, he avoided me, and it was because of leprosy. So, he took that opportunity to say he would go to work in Maputo. But after a while, I realised he just left me and never came back because of leprosy.”

How is stigma resisted by persons affected by leprosy?

At the personal level

At the personal level, stigma resistance is better categorised as stigma management.

There were four main tactics at the personal level:

Maintaining personal hygiene: paying attention to cleanliness and appearance helped uphold dignity
Leveraging spiritual beliefs: trust in God is a powerful coping mechanism
Adherence to treatment: health-seeking behaviour prevents disabilities, a big cause of stigma
Non-disclosure of diagnosis: sometimes it is easier if your friends and family do not know

At the peer level

Resistance at the peer level can change societal norms, but often is not perceived as resistance by persons affected by leprosy. This can take three forms:

Avoiding confrontation: choosing not to oppose discriminatory behaviours openly as an act of self-preservation
Informal assitance to others: acts of support to other persons affected by leprosy such as greetings, conversations, and material support can offer dignity, value, and belonging
Selective disclosure of diagnosis: revealing your diagnosis only to those who are trusted.

At the public level

Public level resistance means advocacy and education. Key strategies include:

Educating others and addressing myths: reshaping societal perceptions by sharing knowledge and experiences, often through everyday interactions
Self-Help/Care Groups: these groups provide public spaces where people affected by leprosy are seen as active, contributing members of their community, challenging stereotypes of dependency and isolation
Advocating against discrimination: calling for societal or policy change to dismantle discriminatory structures

Five lessons for the leprosy sector

Not everyone is equipped for resistance

Advocating against discrimination at a public level is a challenging thing to do and we must accept that there are many people who are unable or unwilling to do it. Equally, a person might be interested in doing advocacy in the capital or at the international level but very reluctant to do it at the local level - or vice versa. Alternatively, they may feel differently at other times in their life and no longer feel willing to advocate. If we encounter talented and willing advocates, we should nurture this, but not expect them to do it forever, nor expect everyone to be interested in this.

We must spend more time working on language

One of the most significant contributors to stigma in this study was language. Almost all of the participants in the study had regularly been called names. Some people were purposefully mocked, with one woman being targeted by a group of teenagers. In this context, the leprosy sector could do more to discourage the use of derogatory language within endemic communities. This could be through both advocacy and awareness campaigns. The words that are used can be very specific to local areas, so campaigns would need to reflect local needs.

Disease is not identity

When a person is diagnosed with leprosy they assume an identity within the leprosy sector as a person affected by leprosy. The disease itself becomes the identity and this becomes categorising. We often profit from that categorisation as a leprosy sector, but it is not healthy. Such categorisation can be leveraged to justify the way a person is treated. We must make an effort to recognise the whole person - everything they are beyond a diagnosis.

Five lessons for the leprosy sector

Consider how we talk about religion

There are many leprosy NGOs working on the issue of leprosy that are faith-based. Whilst they may frame leprosy through a scientific lens, their religious identity may unintentionally frame the disease within a spiritual context. We should be mindful of this when we are speaking about leprosy in contexts where it is associated with divine will. How is it perceived when we speak of God's provision? It would be easy for that idea to be flipped so that God is perceived as having caused leprosy.

Leprosy is not a question of win vs lose

This consideration will be familiar to those who have a connection with cancer, where the disease is often portrayed as being ‘beaten’. This creates a sense that anyone who does not ‘win’ is stigmatised as someone who was not able to cope or overcome the disease. We have militarised our vocabulary in that sense. It is intended to galvanise spirits, but for patients it can create an internal struggle; you have to fight and defeat something or you will be defeated yourself. The message of ‘leprosy defeated’ is not always relevant or important and sometimes it would be better to use more neutral language.

This research was conducted by Dr Arianna Bobba PhD with the support and participation of the TLM Mozambique team. If you would like to speak to Arianna about her research, you can contact her here.