By Mumbi Ngugi
In all the places the trustees of the Albinism Foundation of East Africa have visited in the past 10 months, the absence of elderly people with the condition is striking. We have met many young children, many teenagers, and many people in their 30s or 40s, but only a few in their 50s, and only one in his 60s.
Media reports indicate that in the last year,
at least 23 people with albinism have been killed in Tanzania. Shaymaa Kwegyir, a Tanzanian MP who was in Kenya at the invitation of the Albinism Foundation said there have been many more killings of people with albinism, particularly in the districts of Mwanza, Shinyanga and Mbeya, but they have not been reported. The killings are apparently fuelled by the superstitious belief that the use of body parts of persons with albinism in witchcraft will lead to prosperity.
The killings, however tragic and regrettable, are only a small indication of the many ongoing violations of the human rights of people with albinism. Talking to Ms Kwegyir and other people from Tanzania, it becomes clear that there have been sustained but silent violations, particularly of the right to life. Infanticide of children with albinism is apparently common but unacknowledged. And it should not be thought that such violations are confined to Tanzania. One media report recently indicated that a woman with albinism had been found murdered in Borabu, Kisii. It was not clear whether the killing was, to borrow the words of the police, an ‘‘ordinary murder’’ or a ritual killing.
More worrying, perhaps, is the report carried in the media about the killings in Tarime, Tanzania, which suggested that the two men arrested by Tanzanian police were from Kenya. We do not have statistics on the situation or number of persons with albinism in Kenya. We do know, however, that children with albinism, as indeed with any congenital condition that sets them apart from the norm, have either been killed at birth or abandoned to die. This probably partly explains the absence of elderly people with albinism in our society.
There are, however, other violations of the human rights of persons with albinism that are just as common and just as regrettable. These include the abandonment of children by their mothers, or of wives by their husbands when they give birth to a child with albinism. Some children the Albinism Foundation has met are under the care of their grandmothers, while some are in children’s homes where they were placed after being found abandoned. That such violations of the human rights of persons with albinism can occur in this day and age is perhaps not really surprising.
We come from a society that is still deeply steeped in superstition and that is suspicious and intolerant of difference. What is surprising is that both government and civil society have been so silent, or perhaps so ignorant and oblivious, about these violations. The government does not have any statistics on the incidence of albinism in the country, and it is almost totally ignorant about the needs of those born with the genetic condition. To compound matters for persons with albinism, there are no dermatological facilities for screening to ensure early detection of skin cancer. By the time many eventually get to a medical facility, it is too late, and many die from cancer in their 30s.
The violation of the rights of persons with albinism also has a notable gender dimension, particularly with the social ostracisation of women who give birth to children with albinism. Such women are either abandoned or divorced and left to fend for themselves and their children. With the assistance of Urgent Action Fund, CIC Insurance and other partners, the Albinism Foundation has started, albeit on a very modest scale, to address the needs of persons with albinism.
On June 28 it organised an Open Day at the Sarit Centre where information on albinism, the means of ameliorating the effects of the condition, and the talents and gifts of those born with albinism were showcased.
However, the task ahead is enormous and requires concerted efforts that include formulation of policies that address the needs and rights of persons with albinism to education in integrated institutions, proper health care to prevent early deaths from preventable cancers, non-discrimination and social inclusion, and access to employment.
Mumbi Ngugi is an Advocate of the High Court of Kenya and the Managing Trustee, Albinism Foundation of East Africa
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