invisible burden intro

It was planting season in November 2021, when I encountered seven individuals affected by leprosy in West and Southwest Sumba. Through this visual narrative, I explored their individual journeys,
highlighting the challenges they face, the cultural backgrounds and existing poverty and stigma,
but also their resilience, vigour, and hopes for the future.

Biri ride

biri ride overlay

Biri, along with other members of the church, gets a ride to the rice fields that belongs to one of the church members.
A collective effort during the planting season illustrating the strength of this community.

first i meet text

First I met a family of which four members were affected by leprosy: Biri (mother, 47 years old), Talo (father, 43), Ringu (son, 17) and Mollu (grandmother, 63). Ringu was the first one to be diagnosed with leprosy. All family members were traced and invited to the Sumba Foundation health clinic for further skin investigations. Consequently, Talo, Biri and Mollu, were also diagnosed with leprosy.

leprosy often affects text

Leprosy often affects more than one individual in a family due to long-term close contact with an untreated individual and genetic susceptibility. Poverty-related circumstances, such as household crowding, contribute to the transmission of leprosy. Active case finding in leprosy endemic areas and early treatment are important tools to prevent disease transmission.

Ringu develop multiple

ringu develop multiple overlay

In the past five years, Ringu developed multiple skin lesions with loss of sensation on his face, arms and legs. He started multi-drug therapy, which he needs to take for at least 12 months.

ringu talo biri

ringu talo biri overlay

Ringu, Talo, and Biri are having their monthly check-up with Doctor Gladys at the Sumba Foundation health clinic.

nurse palpating

nurse palpating overlay

A nurse palpating the nerves.

a statue of Jesus

a statue of Jesus overlay

A statue of Jesus, with a bag of rice in the background, at Talo’s house. Food security is not taken
for granted in Sumba given the harsh living conditions.

taro biri

taro biri overlay

Talo and Biri sit in front of their house, talking about the buffalo they are going to sell. In Sumbanese culture, the buffalo is the islands most important status symbol. The people work hard to own this sacred animal, care for them, and eventually sacrifice them to honour the ancestors and ensure eternal afterlife for the deceased.

rainy day text

On a rainy day, I travelled across a narrow road through the hills to one of the Sumba Foundation health clinics. I encountered three other patients with leprosy, Rada (46 years old), Robertus (19) and Toru (23). All three have developed severe visible disabilities, as their symptoms were not recognized in time by healthcare workers, and have a tremendous impact on their lives and relationships within the community. Their personal stories exemplify their vulnerability, insecurities, and disappointments, but also dignity, strength, and courage.

heavy rainfall

heavy rainfall overlay

During heavy rainfall, health care workers visited Rada at her house. Wounds on her feet have limited her range of motion and have made it difficult for her to come to the clinic.

rada text

Rada, a mother of seven children, explained that the disabilities and deformities of her body changed her personality and the role she has within the family. “I feel depressed. I can’t walk like I used to do. I can only walk a few steps, and get tired soon. I am sad that I can’t help my husband to support our family.

delay diagnosis

The problem is not only the delay in diagnosis, but also the lack of counselling received. When Rada was diagnosed with leprosy five years ago, she did not complete the medical treatment, which, in her case, took 12 months to finish. Her husband had to travel monthly for more than an hour to pick up the drugs. After six months he never went back. They both expected the treatment would restore the shape of her deformed hands and feet and were disappointed with the results.

rada with husband

rada with husband overlay

Rada with her husband and 10-year old daughter.

rada's husband

rada's husband overlay

Rada’s husband holds an empty blister of multi-drug therapy. Rada stopped taking treatment because she did not
notice any improvement in her condition.

Rabu

Rabu overlay

Rabu, Rada’s daughter, is filling a bucket with water to wash her mother’s feet. Rabu is experiencing similar symptoms
like her mother had in the early stages of leprosy.

rada nolonger has feeling

rada nolonger has feeling overlay

Rada no longer has feeling in her hands and feet. Injuries, such as burns or cuts, easily go unnoticed. Rada inspects her feet every day to check for new injuries and take care of existing wounds.

Rada washes

Rada washes overlay

Rada washes her feet carefully with water and soap to prevent infections.
This is important as she walks barefoot and cannot afford to buy shoes.

rada's footprints floor

rada's footprint floor overlay

Rada’s footprints on the floor.

Rada's footprints

rada's footprints overlay

Rada’s footprints.

Rada searches

rada searches overlay

Rada searches for lice on her daughter’s head. Despite her limitations, this precious moment illustrates her role as a mother
and gives her the opportunity to connect with her daughter.

rada's village text

Not far from Rada’s village, live Robertus, and Toru, who have learned to live with leprosy since they were teenagers. Once the physical disabilities and deformities became part of their life, stigma, labels,
and inner turmoil filled their personal space.

robertus

robertus overlay

Robertus was a very good horse racer, which is a traditional sport in Sumba. His friends believe that leprosy was afflicted on him during one of his races. Robertus accepts the judgements silently with an open heart. Until today, many myths exist about leprosy.

robertus riding

robertus riding overlay

Robertus riding his motorbike home after a routine check-up at one of the Sumba Foundation clinics. He believes the treatment will help his situation and is good for his well-being.

Robertus family house

Robertus family house overlay

Robertus’ family house.

robertus drugs

robertus drugs overlay

Robertus places the prescribed drugs between the weeds on the roof.

disabilities

disabilitas overlay

Despite his disabilities, Robertus is planting rice with his community on the land owned by his family. He walks barefoot in the field,
exposing his hands and feet to severe injuries.

a bowl

abowl overlay

A bowl of rice ready to be planted in the fields.

to thanks

to thanks overlay

To thank the community for their collaborative work, Robertus’ family serve lunch to celebrate this special moment together.

sumba hills

sumba hiils overlay

Sumba hills have been deforested and are being prepared for farming.

Toru text

Toru has developed severe deformities of her hands and feet. When I met her, she had a deep wound on her left foot. The bone was already infected (osteomyelitis). The infection was so bad that part of her foot needed to be amputated. Toru’s community believes that she is being punished for refusing a love offer from a man. To reconcile, Toru’s father and the traditional healer sacrificed a chicken.

toru text II

Toru has a strong and fierce personality. She sees her disabilities as her strength, to push her towards completing her goals. “After I graduate from college, I aspire to work as a teacher to help my family, ” Toru said.

toru ties up

toru ties up overlay

Toru ties up her hair before undergoing a routine check-up at the clinic. Disabilities are more than physical dysfunction. Disabilities impact daily activities, social events and may induce stigma and discrimination violating basic human rights.

toru on her way

toru on way overlay

Toru on her way home.

toru checks

Toru checks overlay

Toru checks her class schedule, before returning to college.

toru talking

toru talking overlay

Toru talking to her family who just returned from the field.

toru checks report

toru checks report overlay

Toru shows her report card.

toru student rooms

toru student room overlay

Toru’s student room that she rents with some friends.

Toru lives

toru lives overlay

Toru lives with her friends in a small student flat. Despite her physical limitations,
she is determined to complete her degree and build a career.

These images expose

These images expose the unmet health needs that are present in eastern Indonesia. Through these stories, we appreciate the complexity of leprosy and the challenges affected individuals and their families face.

leprosy text

Leprosy affects the vulnerable, poor and forgotten societies who live in remote and underserved areas.
It challenges communities that are already plagued by inequities and lack access to care, ensuring
the next generation remains anchored in poverty.

toru flower

toru flower overlay

Toru holding a pumpkin flower: a bright light in the darkness, symbolizing hope for a better future.