My recent visit to a group of people with albinism in Musanze District recently left me more excited than saddened as I had imagined. Reason? The faces that greeted me visibly beamed with a message of hope for a better future. “Disability is not inability”, they appeared to tell me in unison.
The over 100 persons with albinism live in Gahanga village under the care of Amizero Group. They are of mixed age categories: children, youth and elderly. Talking to them, they testify that though they face some discrimination from members of the society, it hasn’t stopped them from dreaming of a better future. They are sociable and participate in various government development programmes. Currently, Amizero Group cares for people with albinism from the four districts of Musanze, Burera, Nyabihu and Rubavu.
Amizero Group is a local organization which was founded in 2012 to support people with albinism. The group’s helps mobilize health services, different basic needs and provides social support for albinos. They also help integrate beneficiaries into society with messages of a bright future.
Tales of a tough journey
Clad in a white shirt and long black skirt, with a face punctuated with a broad smile, 18-year-old Denyse Ayinkamiye, one of the beneficiaries, explains how she leads her daily life, despite facing difficulties and even stigma as an albino.
“We sometimes face discrimination, but, despite my physical disability, I don’t see it as a big problem that can stop me working on my goals. I am in my second year at Kanzenze Secondary School and I always emerge among the best five students with an average of over 60 per cent every term.
“At home, I engage in farming and I have a cassava garden. In spite of the stigma I sometimes face, I am looking forward to becoming a national leader. Belonging to a group or any community like this helps us revive our hope,” she says.
Having lost her parents, Ayinkamiye currently lives with her elder sister in their native land in Kirerema Cell, Kanzenze Sector in Rubavu District. Her brother, Olivier Iyamuremye who is in Primary 4 at Kanzenze Primary School, also has albinism.
On the other hand, Jean de la Paix Shyirambere, 24, a resident from Busogo District who lives with albinism, says people with albinism have hope and security.
“The government has set in place tight measures against human trafficking. It is one of things that give us hope in everything we do because we feel protected,” he says.
Two of Shyirambere’s other five siblings are also living with albinism.
Hope amidst challenges
Fikiri Jayden Uwimana, the president of Amizero Group, says people with albinism still face various challenges.
“In Musanze, as well as countrywide, organisations for people with albinism don’t have enough financial capacity to support these people with all basic needs to cope with this disability.
“For instance here in Musanze, we lack some crucial materials like sun glasses, albinism lotions (sun lotion), access to education, entertainment spaces and sometimes discrimination. For girls and women with albinism, they still need much more care,” Uwimana testifies.
According to Fr Bonaventure Twambazimana, the founder of Amizero Group, people with albinism still face stigma from some members of the society.
“There are still some members of our society who think that people with albinism are not like others. Some of the children with the condition are maltreated and rejected, but we do advocacy for them. These people need our support and care,” he says.
Albinism cases in other regions
In Kigali, people with albinism are mobilized under an organisation dubbed Organization for Integration and Promotion for People with Albinism (OIPPA).
The organisation caters for 115 people with albinism from the districts of Kicukiro, Gasabo, Nyarugenge and Musanze from Northern Province where It was founded in 2013.
During an interview with Nicodeme Hakizimana, the project officer of OIPPA, he explained that in Kigali, people with albinism still face various challenges, but they are not discriminated against much.
“With the help from National Commission for People with Disability, people with albinism are helped through connecting them to other members of the society and sensitising the society to change their mindsets against people with albinism. They get scholastic materials and health services,” Hakizimana said.
He one of the major challenges for organisations in charge of people with albinism is the lack of an identification and registration mechanism countrywide to be able to design projects tailored at helping these vulnerable people.
Authorities speak out
Emmanuel Ndayisaba, the Executive Secretary at the National Commission for People with Disability (NCPD), explains that people with disability in Rwanda are cared for.
“Though they are some challenges like false mindsets against people with albinism, NCPDis taking new measures to bring better changes in their treatment. We have twice celebrated the International Day of People with Albinism and there’s one coming up soon. We want to address all issues that they face,” he says.
Ndayisaba explains that they will work with Rwanda Social Security Board to give all people with albinism health services under Mutuelle de Sante so that that can access sun lotion, one of the most expensive basic needs they need to survive.
He said currently NCPD has registered up to 897 people with albinism countrywide.
Albinism in humans is a congenital disorder characterized by the complete or partial absence of pigment in the skin, hair and eyes. It is associated with a number of vision defects, such as photophobia, nystagmus, and amblyopia. Lack of skin pigmentation makes for more susceptibility to sunburn and skin cancers.