Singing & Change on World Leprosy Day (1/26/25)

Images from three Indian Leprosy awareness videos

Leprosy (now more properly designated Hansen’s Disease) is a disease of almost overwhelming stigma. It can cause disfigurement and is associated with poverty, all the more so now that treatment is readily available. It is a disease that also causes us to attend to our social response, highlighting the tension between charity and revulsion, inclusion and fear.

The work that goes on around the globe on World Leprosy Day seeks to create social change – to reduce stigma, emphasize treatment and inclusion in community, and break the inter-generational cycle in which leprosy leads to isolation leads to reduced education and livelihood opportunities leads to poverty which leads again to leprosy.

While it’s early yet to see what will be issued for THIS year’s world leprosy day, I’d like to take up three examples of the campaign from previous years which provide a glimpse into the power that music has in these socio-medical campaigns. It is, in other words, an example of music as public health, and one that I like to talk about with students in my Music, Pandemics, and History class.

EXAMPLE 1: A Leprosy Awareness song
“Gandhi’s dream: India should be Leprosy Free”

The song conveys straightforward yet impactful messages.

One theme is that of awareness. “It does not spread by touching”; treat early; it’s eradicable. Also, finish your course of treatment, “medicine has to be given till the end.”

A second is working toward a more inclusive society: “We should get a little more, we should get all the rights, we should get a sense of belonging in the heart, the society should accept us from the heart, leprosy has to be eradicated from the body, mind and thought also.” Likewise, eliminate discrimination and avoid stigma by adopting a caring attitude -- “Avoid grudges or bad mouthing”; “Keep the patient happy with a loving face.” 

A final message is the fact that we are all implicated in this work: “Through a joint effort we can all make India free from leprosy.”

The music reinforces this vision in several ways. It adopts traditional Indian idioms and instrumentation. The musical style is approachable, trending toward pop. The presence of a lilting, danceable percussive backbeat, for instance, gives the performance energy. There’s a good deal of musical and verbal repetition, and sections are marked with dramatic gestures such as a rising swoop in the strings. There is a chorus that comes in to add richness to the texture. Put together, these choices are signaling that theme of collective effort together; just as this is “our music,” so is its challenge “our problem.”

EXAMPLE 2: Sparsh Awareness Campaign (A governmental educational program)
Theme: United for dignity

This initiative was a government-sponsored campaign to use a festival model to facilitate education and awareness of the disease. The performances include skits, dance, and song, in between giving speeches about the disease. The (edited) example here comes from Vellore district, and condenses the cultural offerings to focus in on the speeches that convey this 2022 message:

“The disease will not spread through treated persons. Hence all cured leprosy persons should not be neglected or disliked. The WHO Theme for SPARSH Leprosy Awareness Campaign 2022 is "UNITED FOR DIGNITY". Therefore, let us strive to uphold the honour and dignity of leprosy cured persons.” (Excerpt of the YouTube description)

At the beginning of the clip, we again get singing, this time by a woman singing in the traditional Indian style, celebrating the local region, Tamil Nadu. The song depicts the importance of local culture and the importance of state initiatives. This is followed by a traditional circle dance to sung accompaniment which visibly expands to include the community gathered in an outdoor venue. 

This initial set-up emphasizing music and dance creates a bridge between cultural pride and public health awareness messaging that follows. There is the familiar sound of local musical practice. The performances, though polished, are not unduly professional; they seem to stem from within the community. This is reinforced in the dance, where the circle of women visually segues into the circle of the listening audience, many of whom bob and sway to the sounds they are hearing. We have been brought from the joys of cultural expression into community, “United for Dignity,” which shares its appreciation for such beauty. The implication is that they will share as well in the understanding from the day’s educational program.

There’s a bit of slippage here: enjoyment of song, and enjoyment of message are portrayed as somehow equivalent. This is an important public health messaging strategy that we see on a variety of fronts (see AIDS awareness in Uganda, for instance). Music, dance, and other cultural expression draws in the crowd, garnering attention and preparing them for the harder-hitting messaging about disease safety, treatment, and the need for change.

Here in the Vellore video, that stratey is made explicit. After these initial song and dance excerpts, we cut to a series of speakers each of whom speaks from a seat in front of a poster about leprosy awareness. The poster behind the series of speakers is busy delivering text. It mentions symptoms (“loss of feeling”) but also seeks to normalize the disease; we should “treat it like TB.” Lastly, it makes the point that clinics will provide evidence-based care, there is “no experimentation” (!) in delivering treatment for the disease. As a backdrop, the poster is a bit overwhelming; the amount of text and the array of type-faces and colors seem to function more like a flag backdrop than a conveyance of information. Tired eyes might prefer instead to focus on the speaker, and maybe that’s part of its purpose. It is “official” without being “interesting.” Reading is work; listening is easier.

Indeed, what IS interesting, in contrast to the poster, are the series testimonials from individuals who have had the disease. These testimonials make up the central portion of this “Leprosy awareness day.” The first [in a google translation based on a notta.ai transcript], reads:

My name is Shafuddin. I am speaking from Vellore. My body has been damaged since 2001, so I went to the hospital. They said it is leprosy. In the hospital they said it will be cured by treating it. I took similar medicine for two years. The body recovered to some extent. Hands and feet are very nerve affected, there is a lot of pain, so they said that by doing an operation the hands will be cured. After doing the operation it got cured. I do my work myself. I can eat. I do all the work myself. There is no problem. Feeling good. Leprosy is not a bad disease. If you take the right medicine you will be cured.

This shared personal experience helps the audience understand the multiple treatment options. There were the meds, and then afterwards a surgical intervention. The success of his treatment and his subsequent independence would be important to anyone who fears that they themselves might be suffering. Moreover, his story demonstrates personal resilience and also the societal support needed to uphold dignity for those affected by leprosy. Shafuddin’s journey from diagnosis to recovery directly embodies the campaign’s call to honor the dignity of those affected by leprosy. Likewise, his ability to regain independence challenges stigmatizing narratives. His message, as I see it, reinforces the hope embedded in the festival's music and dance.

Later in the video (1.59) there is a masked and costumed dancer and supporting chamber ensemble; the elaborate costume and intricate steps contrast with the packed-earth dance circle and the backdrop of cow and crops. A second and then third character come in to enliven the skit. This cultural offering too is followed by impassioned speakers.

Alternation of entertainment and education keeps the audience engaged. Such alternations also subtly suggests that there is a “whole-life” experience in illness treatment. Just as we (here the we of the community audience and its internet echo) enjoy the singing and dramatic action, we – the united “we” of community – should enjoy our support for these companions who have suffered with the disease, and for their invisible compadres.

The video ends with a medical overview of symptoms and treatments, and an emphasis that treatment is free. The government is working to support eradication, and anyone who has the disease should be treated.

Here, we see music as an attention-getter, valuable for its entertainment value, and providing a forum in which other socially-critical messages can be sent. We also see music as a community-building element, identifying the “united we” of the messaging campaign. The visual placement – an outdoor festival setting, with birds and other nature sounds – create an ironically “homey” atmosphere, in which you are hearing from neighbors and compatriots about what is possible. And throughout, the upbeat music goes along with the upbeat message: Leprosy can be cured. That message is worth celebrating.

In short, I think this approach – blending traditional cultural expressions with modern health messaging – creates a shared space for education, empathy, and celebration of civic progress in a significant public health initiative. Like “Gandhi’s Dream,” the message here is simple: just as we collectively respond to the music, we should collectively respond to the disease itself. Through its blend of traditional cultural forms and modern health education, the Sparsh Awareness Campaign demonstrates the potential of music and other performative arts to transform public health initiatives into inclusive, community-driven movements.

EXAMPLE 3 An Award-winning leprosy awareness short (from 2003)

Dungarpur Films' 2003 award-winning short, recipient of the Indian Documentary Producers’ Association (IDPA) Gold for the best public service film for leprosy awareness, delivers a powerful yet simple message: 

One intervention can make a difference. 

The film follows a woman and her son as they navigate the stigma surrounding leprosy and move toward the hopefulness of seeking treatment. It begins with the village headman’s stark declaration: “There’s no place in the village for leprosy patients.” This sets the stage for conflict, as the family’s diagnosis has sparked fear among the villagers, who seek to exile him and his mother so that the disease stigma doesn’t pass to the broader community.

Yet, one woman raises her hand and calls to the mother and son. She speaks out against exclusion, commanding them not to leave the village, but rather to go straight to the health center. She reinforces this message by publicly inviting the mother’s touch, hand to head. Her intervention shifts the focus from judgment to action and the narrative from vague crowd mutterings to crucial public health information: “A disease-free body… Leprosy is completely cured with MDT [Multi-Drug Therapy]. And this MDT is available completely free at every government health center.”

The film ends with a resolution—the mother and son are welcomed at the clinic, where they receive treatment. The final frame features the National Leprosy Eradication Programme (NLEP) symbol: four connected stick-figure hands alongside the message, “Join hands: eradicate leprosy.” This visual reinforces the short’s central theme of connection and collective responsibility.

At its core, the film frames stigma as a more pervasive and damaging issue than the disease itself. We initially sit with the discomfort of an unhappy village; we are grounded in the reality that the ill one might be ostracized. The disease is contagious, but attitudes are even more contagious. The woman’s intervention not only counters this stigma but also demonstrates the courage and compassion needed to enact change. By touching and interacting with the family, she visibly defies the rumor and shunning which had seemed increasingly normative. Her actions embody the film’s call for inclusion and understanding.

This act of bravery is pivotal. It transforms a moment of potential exclusion and banishment into one of connection and hope. The journey to the clinic becomes a metaphor for the broader societal journey—from ignorance and fear to knowledge and action. The message is clear: intervention, grounded in education and empathy, can dismantle stigma and pave the way for healing.

Her intervention is successful; we follow these characters as they move toward the clinic, receiving crucial public health information. Leprosy is completely curable. Treatment is free at all government health centers. There is a solution. We end with an arm around the shoulder in support – connection, not stigma, will solve the disease.

The film’s music underscores this narrative journey, amplifying the emotional stakes and reinforcing the thematic arc. At the start, the suspenseful score reflects the villagers’ tension and hostility. There’s a traditional voice, and threatening intermittent and unpredictable drum. We hear discussion and crowd noise. This is the acoustical chaos of bad things happening.

Yet, after a woman intervenes, we move toward acceptance and a resultant shift of musical idiom. A more hopeful lyrical voice emerges, as well as more instruments playing in a coordinated and more predictable way. We have a reiterated drone pitch to provide a harmonic reference point, making the point that stability comes from seeking treatment. So does optimism, for a series of arched phrases accompany images of the journey to the clinic – the boat, a bike and walk into the clinic. The highest of these vocal phrases is delivered as our patient receives her packet of medicine, not only a climax, but a happy one. Throughout this section, there is also more complexity in the drum rhythms, accompanied with the tinkle of high bells – a brighter timbre, with more interesting patterns. This is music that we want to listen to. It is music as “accompaniment to action.”

The music of this 90-second short, in other words, tells us that inclusion and intervention are the right choices, the ones that will lead to a positive, major-key kind of place. We have, in the final frame, the joy of treatment with the final high arched phrase. Layered over that is the visual cut-in – the NLEP symbol, and four connected stick-type figures, with the words of the final message: “join hands: eradicate leprosy.”

Dungarpur Films’ offering blends narrative, music, and public health messaging together in order to inspire change. By addressing stigma through a compelling story of intervention – by illustrating the transformative power of knowledge and empathy – the film leaves viewers with a clear and actionable message: inclusion and education can eradicate both the disease and its associated stigma.

The music, serving as both a narrative driver and an emotional guide, amplifies the film’s impact. From the acoustical chaos of exclusion to the lyrical harmony of hope, the soundtrack underscores the journey from fear to acceptance. Storytelling and music here foster understanding and community-building. The film's call to “join hands” remains as resonant today as it was in 2003: just as we collectively respond to music, we must collectively respond to disease and its societal implications.

TAKE-AWAYS

As we have seen in these three examples of leprosy intervention, music plays a vital role in public health. It bridges the gap between complex medical messaging and community engagement. Its ability to evoke emotion, foster community, and reflect local cultural values makes it a powerful tool for reducing stigma, promoting awareness, and encouraging positive collective action.

Whether through traditional idioms, modern compositions, or community-driven performances, music transforms abstract health messages into relatable, memorable experiences. By integrating music into campaigns, public health initiatives transcend mere information dissemination; they build empathy, solidarity, and hope, empowering communities to confront challenges together. Music, in essence, resonates not just in sound, but in its capacity to inspire societal change.

THANK-YOU'S

For more on Hansen’s Disease, see Documenting Lepers’ Lives: The House is Black (1962)

I would like to thank Avagail Hulbert, whose seminar contributions on India’s leprosy eradication programs introduced me to these and other compelling examples of music in public health. I would also like to thank my colleague and friend Gregory Barz, whose work on medical ethnomusicology was my first introduction to the topic. Lastly, I’d like to thank all those many people – musicians, film-makers, dancers, educators – whose capacity for empathy and commitment to optimistic service is the active force for good that makes real change happen in the world.

#pandemic #leprosy #music #PandemicMusic #India #PublicHealth #advocacy #WorldLeprosyDay #HansenDisease #PublicHealthCampaign

Documenting Lepers’ Lives: The House is Black (1962)

Two men in hats on a rubble heap, one playing a wall-attached string instrument

I watched the Iranian film “The House is Black” to see if it would be useful for my Music and Pandemics course. It has a couple of short musical examples, but they didn’t really have enough context to be useful for a teaching purpose.

And yet, I want to make a plea to you, dear reader, that you take the 21 minutes to watch this amazing film about a leper colony, a film created in 1962, the year before I was born. Feminist Iranian poet Forough Farrokhzad made only this one film, but her documentary about ugliness and beauty and grace and humanity – and isolation – and disfiguring disease is truly transcendent.

Her film is a profound meditation on the resilience of humanity and the power of community in the face of disfiguring disease and social exclusion. Through stark and compelling visuals, poetic reflections, and moments of shared joy—a few of which are marked by music—the film challenges viewers to confront our own perceptions of beauty, grace, and shared humanity. The message of the film is that we humans are not limited to our disease-prone body; perhaps the most important things to all of us everywhere are the moments of joy, the beloved doll, and the connectedness one to another.

“On this screen will appear an image of ugliness, a vision of pain that no caring human being should ignore,” she warns us at the beginning of the film. Disfigured bodies, and the care that they need, are dealt with unflinchingly. Well, that’s not true. Farrokhzad may not have flinched from showing the care of a diseased foot, even returning to it, but I flinched. The hands, yes, pressing the hands to straighten them out makes sense. It’s even akin to the treatment that mom went through, though she had a different disease. But the dead flesh on the foot, yikes, that was hard to see. Why look? Because, as she says, we should care enough to know.

Superimposed over the glimpses of life in the leper colony, we get segments of Farrokhzad’s poetry. “Remember that my life is wind. I have become the pelican of the desert, the owl of the ruins, and like a sparrow I am sitting alone on the roof” (12:03). We watch members of the community at games, and Farrokhzad reminds us again that “Remember my life is wind, and you have given me a time of idleness, and around me the song of happiness...” (13:32). These poetic evocations help us to process what we’re seeing. They aren’t a narrative per se, but rather the evocation of meaning that goes in tandem with the visual element. More lyrical than prosodic, Farrokhzad reaches to us at a visceral level to command our engagement and provoke us into understanding of what we are seeing, and ultimately, it is to be hoped, into acceptance of the shared humanity of these scenes.

Music appears in a few segments of the film. It accompanies the scenes of play, work, grooming, and childcare (14:17-14:43). This is self-made music, internal to the community, not from outside, and not complex, but rather a simple thrumming of an instrument I don’t recognize. The community does, though: we see the dancing feet of a member of the community in time to the thrumming. “Let’s listen to the soul who sings in the remote desert,” says  Farrokhzad, “The one who sighs  and stretches his hands out saying: Alas, my wounds have numbed my spirit.” Numbed my spirit, perhaps, but not deadened it. There is still a capacity to dance, and to love.

We have a bit of singing at (15:09), but it is a momentary lead-in to visions of more personal grooming: a mother (one presumes) with her daughter, and a woman with deformed hands applying makeup to her eyes. These images are accompanied by an exhortation that vanity is in vain: 

“O the time-forgotten one, dressing yourself in red, and wearing golden ornaments, anointing your eyes with kohl, remember you have made yourself beautiful in vain, for a song in the remote desert, and your friends who have denigrated you…”

The question of beauty is particularly fraught, of course, in the environment of a leprosarium.

The third musical example of the film is a bit of ceremony, with drum (15:52-17:10) interlaced with singing mixed with murmurs as the crowd moves in what seems to be procession. The procession  segues directly into a chamber ensemble environment, with visual closeups of a strummed fretted string instrument (an Iranian Tar), a double reed, and a flute-like instrument, as well as the pervasive drum, shown toward the end of the section. This music is met with enthusiasm – the audience smiles, indulges in clapping along, and dances. The film seems to argue that music is integral to community, and I can get behind that sentiment! With music driving the gathering, we are led to see these people not as patients, but as engaged participants in an inclusive community.

We may know that this is a leper colony, but the film doesn’t make that point explicit until the gates close in on the inhabitants at 20:30. By that point, we have been so engaged with the life of these people that the closing gate – the separating out, the quarantine, the segregation – comes as a disturbing rejection of our shared humanity.

Which is probably exactly the message that Forough Farrokhzad meant to convey.


The House is Black (1962) by Farough Farrokhzad, available https://www.criterionchannel.com/the-house-is-black

Note: Nowadays leprosy is called Hansen’s disease to avoid the stigma associated with the terms “leper” and “leprosy.” I use the former term since it is the language used in the film’s translation. The disease is still relatively common; the CDC points out that 250,000 around the world are diagnosed with Hansen's disease each year. But it is also treatable, a point that Farrokhzad emphasized in her narrative.