What’s in a name? For some campaigners, the name ‘leper’ does more harm than good in fighting the infectious disease which continues to be saddled for those whom it affects with stigma and prejudice.
“Health campaigners are calling for an end to the use of the word leper, saying the language frequently used by politicians and others during the pandemic has made people with leprosy even more marginalised,” reports The Guardian. The article quotes global advocacy manager at the Leprosy Mission, Mathias Duck, that “this type of language perpetuates a mindset against people still suffering. People affected were already marginalised before the pandemic, and the pandemic has pushed leprosy even further down the priority list.”
Indeed, as The Guardian notes, “according to a UN [United Nations] report presented to its human rights council…people affected by leprosy have lost access to treatment, had their drug supplies disturbed, been cut off from work and have died in high numbers from COVID-19.” According to that report, “discrimination in law and in practice, together with substantive discrimination with regard to access to social and economic rights, has left persons affected by leprosy in a situation of extreme vulnerability to COVID-19 and to the crisis that has unfolded, compromising their right to life and unveiling, in practice, the indivisibility, interdependence and interrelation of human rights.”
India shoulders the world’s highest burden of leprosy. According to Lepra, “last year 63 percent of the world’s 214,000 newly diagnosed leprosy cases were in India and it is estimated that two million more are living with the long-term effects of the disease. Prejudice against people with leprosy still persists in India. There are over seventeen laws which discriminate against people with leprosy, such as leprosy being grounds for divorce and people visibly disabled by leprosy are prevented from travelling on trains.”
Officially, India eliminated leprosy in 2005 but its cases remain voluminous and in need of addressing. Whilst it may seem trite to some to incorporate eschewing the use of the term ‘leper’ as part of the strategy to rid the world of the disease, it does make sense. “What most people affected by leprosy want is to be called by their name, not to be marked by their condition,” said Duck – himself a leprosy survivor. Given that ‘leper’ is used interchangeably with terms such as ‘outcast’, campaigners argue, “please let us stop using ‘leper’ as a negative metaphor for being an outcast, isolated or condemned, which reinstates the stigma that we have been trying to erase.”
Leprosy is curable. But stigma can dissuade those affected from coming forward or being able to access healthcare. As we continue to address leprosy, let us make a concerted effort to reduce stigma – even if it simply means foregoing the term ‘leper’ and calling someone by their name.