June 21, 2017
The first law segregating people affected by leprosy in Senegal was passed in 1965. Just over ten years later in 1976, Senegal replaced leprosariums with “social rehabilitation villages”. In many ways nothing changed with the new law and the new name. Stigma, discrimination and isolation did not disappear over night and they are still felt by those affected today.
Senegal sees around 200-300 new cases of leprosy every year, but there may be more as it’s possible that not all cases are detected due to misdiagnosis or fear of stigma. To bring leprosy down to zero in Senegal, it is essential to remove this stigma and discrimination as a barrier. When people feel they will be stigmatised they may fear being cast out of their community or they may hide the symptoms of leprosy. In turn this can allow serious life-long impairments to develop and worsen their own discrimination in the long run.
In 2014, the people who live in the villages asked the Senegalese government to repeal the law, saying that it was discriminatory and was perpetuating stigma against them. The Senegalese government promised to repeal the law, but movement to enact this pledge has since slowed. Instead of being labelled as villages, like hundreds of others across Senegal, they are still “social rehabilitation villages.”
Mahamath Cissé, programme director for DAHW in Senegal, an ILEP member, says that those living in the villages are still “entirely seperate” and lack basic integration into society. In sum, the law denies those affected by leprosy the same rights that are given to those who live in other villages in Senegal, primarily the rights to equal opportunity and inclusion.
While many of the members of the villages are elderly and former patients, who now live with the disabilities that leprosy inflicted, many are also children. Born in the villages, these children are growing up alongside the widepread, and false, belief that leprosy is extremely contagious and that it is a hereditary illness, passed from parents to children. 19,000 children were diagnosed with leprosy across the world in 2015.
Things have changed over the years however, and the social rehabilitation villages are not nearly as isolated as they once were. In Mballing for instance, formerly the largest leprosarium in the country, there are around 5000 people living there, with only 300 or so current or former leprosy patients. But those affected by leprosy are not given the choice to live there, they are bound to the rehabilitation villages by law and are, in some cases, completely dependent upon the state for support.
DAHW has been campaigning against the discriminatory law for sometime. In 2004 there was a major breakthrough when the first national meeting was convened to discuss repealing the law that kept people affected bound to the social rehabilitation villages. DAHW argued that these villages prevented inhabitants from being considered “normal”.
Afterwards, DAWH, alongside Senegal’s Department of Social Action, played a key role in setting up a committee to ensure that discussions continued and that the momentum for repealing the bill was not lost.
The committee prepared a draft memorandum for the repeal of the law, Cissé says. “After several meetings with the Health and Social Legislation Office of the Ministry of Health, this repeal bill was validated and forwarded to all government departments to obtain their views… Today we are waiting because it is with the Prime Minister and the Minister of Health to pass the text to the National Assembly for its repeal.”
In the meantime DAHW continues to raise awareness of leprosy in communities across Senegal through radio broadcasts. Their work at the political level has not ceased, says Cissé.
“We are hopeful that this outdated and marginalising law will be repealed to allow those long excluded populations to fully enjoy their citizenship and to be able to exercise their duties and claim their rights.”