Government should make a deliberate effort towards compiling data for Persons with Albinism (PWA) while carrying out national census, the Speaker Rebecca Kadaga has said.
She said this will help in planning for the special needs of PWAs like healthcare and education.
“Even the local council leaders should make it their responsibility to know the number of persons with albinism in their areas so that we can plan for schools,” Kadaga said.
The Speaker made the call after a fundraising walk aimed at raising funds for the construction of a rehabilitation centre for PWAs.
The event on Monday, 20 January 2020 is part of the activities of the Parliament Week.
The event that was attended by Members of Parliament, representatives from various ministries, departments and agencies, private organisations, Non-Governmental Organizations as well as religious leaders saw Shs54 million raised.
The Speaker was also concerned about the continued taxation of sunscreen and other protective gear for the PWA even after Parliament scrapped the taxes.
The Government Chief Whip, Ruth Nankabirwa pledged to be a goodwill ambassador in cabinet for policy related issues on PWA.
“The Speaker’s proposals on making the lives of persons with albinism better require policies and I will ensure that these policies are passed when they are presented in cabinet,” Nankabirwa said.
She applauded the Speaker for initiating the fundraising walk saying that addressing the plight of PWAs requires concerted efforts.
According to the Clerk to Parliament, Jane L. Kibirige, the funds raised from the previous three years will be used to purchase land where the centre will be built.
“The money to deposit on the land is available and Parliament is in the process of identifying land without encumbrances,” said Kibirige.
Olive Namutebi, the Executive Director of African Albino Foundation applauded Parliament’s efforts in addressing the plight of PWAs, saying that their condition has now been recognised under the 2019 Bill on Persons with Albinism.
She however, said that they are still faced with the challenge of inaccurate number of persons with disabilities in the country, saying that this affects services for persons with disabilities.
“A recent research carried out by the Albinism Umbrella with support from Oxfam in nine districts of Eastern Uganda shows that, there 263 persons with albinism in those districts. Those who did not want to be counted were left out and therefore the 263 total is not accurate,” Namutebi said.
She also said that the research found that 68 per cent of PWA did not know the cause of albinism.
“What does this mean; they are prone to believe anything, you know albinism has different myths surrounding it and because you do not know that it is a genetic condition inherited from both parents, this is the reason we are discriminated,” said Namutebi.
Albinism is a genetic condition where some people are born without the usual pigment or color in their bodies. Their bodies are not able to make a normal amount of melanin, which chemical is responsible for eye, skin, and hair color.
The Fundraising Walk marked the start of the week-long Parliament week, aimed at bridging the gap between Parliament and the public.
During the week which runs from 20 to 25 January 2020, Parliament engages with the public through various activities including an inter-faith prayer service, the Public Parliament where members of the public become MPs for a day, stakeholders dialogue as well as tours of Parliament. Members of the public will also be able to meet their MPs.
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