Sierra Leone: Focus on Albinism: SLPP Government, it is Your Turn to Act
The Persons with Disability Act was passed in May 2011. More than 10 years later, persons with disabilities (PWDs) cannot receive a Permanent Disability Certificate to make them eligible to all the rights and privileges provided under the Act. The New Direction Manifesto criticized the former government for failure to implement the provisions of the Act. Yet, three years into their mandate, the Bio administration has yet to issue a single disability certificate.
Sierra Leone has not always been kind with its people living with disabilities, and in general with those who look “different,” such as people living with albinism.
Women living with albinism suffer the most. Jeneba Sesay, an Advocacy Officer for the Sierra Leone Albinism Foundation (SLAF) explained that persons living with albinism, especially females suffer neglect and discrimination and, as a consequence, they grow to feel and believe that they are not important in the society. Jeneba recalls that as a child in JSS2, her teacher tried to embarrass her due to her disability.
“Whenever I read what was on the blackboard, the teacher asked me surprisingly, ‘Oh, so you can see’,” she recounted. People with albinism suffer from reduced or loss of eyesight, or vision. “Also, the boys used to tell me that I will be the only girl in that school who will reach university because no one will fall in love with me.” Jeneba recalls being named a demon, witchcraft, and emphasized that persons living with albinism are as smart as any other person.
Jeneba encourages persons living with albinism to stop being shy, and live their life as best they can, while ignoring the mean comments from those who are ignorant.
She disclosed that people in general, including government officials, find it difficult to understand albinism is a disability. “During this COVID-19, when our colleagues in the provinces went for the cash transfer that NaCSA [National Commission for Social Action] gives traders and vulnerable people, the government officials told them that they were not among persons with disabilities, and as a result, they rejected five of them, [and] only two got the money.” Janet explained that this challenge exists in every sector, including when they wish to access free healthcare.
She emphasized the COVID-19 pandemic has women living with albinism the most, because majority of them are illiterates who merely survive on petty trading. “We’ve received disturbing reports of people with albinism being discriminated. In fact, the latest report we received was from traders living with albinism. They complained that customers were afraid of buying their goods during this COVID-19 not because of having a bad product to sell, but because they their skill is different from them.”
Mawusie Dumbuya, Head of Communications, National Commission for Persons with Disability (NCPD) said that the Commission has not yet issued any disability certificate to date. According to section 7 of the Act, it is the mandate of the Commission and the Medical Board to issue it, he said. “As I speak to you now, we have developed a screening tool to screen persons with disability to ensure that they get the certificate,” he promised.
Mr. Dumbuya also promised that the process to issuing disability certificates is almost complete. “We want a situation wherein, if the Commission and the Ministry certified a person, it will be captured not only by us, but by Statistics Sierra Leone and by the National Registration Authority, because [persons with disabilities] need a card to show that this is their certificate. By this card, they are entitled to all the benefits stated in the Act. This process is almost completed. No sooner we are done, of course, the certificate will be issued out.”
Rashid Dumbuya, Human Rights Lawyer and Legal Link’s Executive Director said that in Sierra Leone is part of the U.N. Convention on the Rights of Persons with Disability, and has domesticated that Convention, but our legislation isn’t specifically focus on persons with albinism. People living with albinism are legally covered under the Disability Act of 2011, and they are categorized as persons with disability.
He said that the country has made some progress in adopting legislation and institutional reforms. “But there are still challenges. So, as a Human Rights Lawyer, safely I will [grade the efforts] as 4 out of 10,” with need for improvement in the area of legislation and policy implementation. “We are still far behind in the area of access to healthcare facility, education, employment, and accessibility of public buildings,” for people living with disabilities, Mr. Dumbuya assessed.
Mohamed Kaifala Sesay, Programme Officer, Sierra Leone Albinism Foundation (SLAFo) said that in Sierra Leone, people believe that persons living with albinism do not die. “This is just mere fabrication,” he said, because he knew of two colleagues living with albinism who died after they were diagnosed with skin cancer.
To date, he said, his organization has not received any support from the government and access to free healthcare is almost impossible. “Many times, the laws are there, but they are not fully implemented. Two of our colleagues died at the Connaught hospital two years ago because they did not receive the right medication,” he alleges. “I walked to the [Disability] Commission to see how they can aid them but at the end of the day, they were never given the support they needed.”
He said that friends from the diaspora usually donate the sun cream to his organization to distribute among the albinism community but he has not received any help from them during this COVID-19. “Recently, during this pandemic, a lady with albinism suffered from a sunburn and she was admitted in Bo, we had no assistant from the Commission,” he said.
Access to education has also been challenging. Because persons living with albinism suffer from visual impairment, SLAFo regularly visits the schools to advise teachers and school authorities to make sure that they allow persons with albinism to occupy the front rows so they can see the blackboard better. The government also needs to closely monitor hospitals in the implementation of the free healthcare provisions as established in the Disability Act.
“Also, we always tell the government, especially to the Ministry of Education, to provide assistive devices for persons with disabilities. Persons with albinism need sunglasses. Three years back, Apex Optic provided free sunglasses for persons living with albinism. But in terms of the government [Ministry of Education] it is high time they considered providing persons living with albinism with assistive devices that will aid their vision in school,” Kaifala Sesay said.
But the tides are slightly turning too, and Kaifala Sesay observed that some attitudes toward people living with albinism are improving. “We hope that there will [soon] be a time when the government will consider and listen to our calls.”
“Once you are a person living with disability, be it albinism or whatever form of disability, you are entitled to all of the provisions in the Act,” said Mawusie P.I Dumbuya, Head of Communications, National Commission for Persons with Disability (NCPD). “For example, section 14 of the Act states that every person with disability should have free access to education at tertiary level. Section 17 talks about free medical [care] for persons with disability. If you are living with albinism of course you are entitled to that. Also, sections 19–21 talk about employment. Persons with disability should be employed. They should not be discriminated,” he said.
“This story was produced with support from Journalists for Human Rights (JHR), through it’s Mobilizing Media in the Fight Against COVID-19 in partnership with Sierra Leone Association of Journalists.
By Stephen V. Lansana
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