Needs of lepers overlooked in race to please World Cup fans

While Brazilian lepers are no longer shunned, scarce funds are being denied them by the state

WHEN VALDERNÓRA da Cruz Rodrigues was just nine years old her parents noted something wrong with her skin. She was taken to a doctor who quickly ordered her to be ferried down the Amazon river to the community at Colônia Antônio Aleixo.

She was not allowed travel in the boat with other passengers but instead forced to sit in a canoe towed along behind it. The sores on her skin were the first visible signs of Hansen’s disease – leprosy – which since biblical times has inspired a special dread in humans.

Outside the Amazon city of Manaus, Colônia Antônio Aleixo was one of several leper colonies in the rainforest where carriers of Hansen’s were forcibly isolated from the world around them.

“We were not sent here to get better,” remembers Cruz, who lost one leg below the knee to the disease. “We were sent here to isolate us from the world. All of us in the colony had the pain of being separated from our families.”

Thankfully medical understanding about Hansen’s has since improved. Doctors now understand it is not as contagious as was long believed and is treatable. Medical advances eventually led Brazil to abandon its policy of isolating its lepers.

For Cruz and the others in Aleixo freedom came in 1978. “It was like they just opened a birdcage and let us loose,” she remembers. But their isolation since childhood and continuing prejudice in the wider community meant most of the colony’s residents remained in their quiet hamlet by the mighty Amazon.

“The residents of Colônia Antônio Aleixo were not reintegrated into society, there was no planning for the end of their isolation. They were just abandoned by the state,” says Dr Menna Barreto, who spent years treating patients in Aleixo when researching Hansen’s disease.

Since then the community has been engulfed by Manaus. Today more than 20,000 people live there, mostly recent land-hungry migrants who have overcome their prejudice of living alongside Hansen’s carriers to build their shacks in the former colony. But still the former internees have to campaign to force the government to provide them with the services they are entitled to under Brazilian law. They have had to battle against a state government that has sought to shut down one of the community’s health centres that treats Hansen’s patients and curtail other services, sparking protests.

“We are not asking for favours, just our rights. Carriers of Hansen’s need specialised care such as orthopaedics. Everything we have managed to get we have had to fight hard for because the health authorities do not see us as worth investing money in,” says Cruz, who today leads the movement set up by former internees of the colony to campaign for their rights.

But now thanks to the arrival of the World Cup in Manaus in 2014 Colônia Antônio Aleixo has been earmarked for major investment. Just down the road that links it with the rest of Manaus is a cliff that overlooks the spectacular “meeting of the waters” where the reddish Solimões river encounters the darker flow of the Rio Negro to form the Amazon proper.

Here the state government will build Manaus’s fan zone, where people can watch World Cup games on big screens. No budget yet exists for the project, which will have a restaurant built into the cliff and boast a monument designed by Brazil’s architectural patriarch Oscar Niemeyer, creator of the capital Brasília.

The goal is to transform a wasteland – occupied by a communications mast and a flock of vultures but which overlooks one of Brazil’s most spectacular natural sites – into a prime tourist destination that will continue to attract visitors long after the tournament is finished, says Miguel Capobiango, the official co-ordinating World Cup projects in Amazonas state.

But, for former internees, such an investment is a case of getting priorities wrong. They feel angry at the decision to invest in the fan zone when they are forced to fight for basic health services and say the money could be better spent on resolving the chronic lack of basic sanitation in Aleixo.

“If the government wants to invest in the riverbank they should start with the untreated sewage that runs into it,” says Cruz. “The waters around our community are polluted. Many people here survive on the fish caught in the river but a team from the local university said it is polluted. This is what this fan zone will overlook.”

Campaigners have not been able to raise their objections as no one from the state government has contacted the community in Aleixo. “They will probably try to hide our existence,” says Cruz. “But we would like it if fans would come and visit us too. It would be a chance for us to tell our story.”