The Persons with Disability Act was enacted in May 2011. More than 12 years later, persons with disabilities cannot receive a Permanent Disability Certificate to make them eligible to all the rights and privileges provided under the Act.
Just under 2% of the country’s population is living with various forms of disabilities, including blind, deaf, or physically challenged.
But, President Maada Bio has promised in his New Direction Agenda: Consolidating the Gains and Accelerating Transformation” which gives account of his administration’s stewardship in the last five years and lays out the vision to continue transforming Sierra Leone, that his government will Support the roll out of Disability Assessment, Identification and Certification System; a more functional system for assessing and certifying the status of persons with disabilities drawing on good practices from other countries.
Sierra Leone has tried in minimizing discrimination and increased free tertiary education access for persons living with disabilities, but much needs to be done.
Persons with albinism have very pale skin, hair, and eyes. They are prone to sunburn and skin cancer, the Programme Officer of the Sierra Leone Albinism Foundation (SLAFo), Mohamed Keifala Sesay said in an interview.
He said that over the year’s persons with Albinism were not recognized as persons with disabilities, but through their advocacy drive, such is changing.
He said that persons living with albinism in the provinces are faced with a lot of stigmatization, but through the Foundation’s regional engagement, they have tried to see how best they can address it.
He said they also meet with the family members of persons living with albinism, adding that they mostly include health practitioners because there are people who have albinism who do not know how to protect and maintain their bodies.
He said that persons with albinism faced with a lot of health complications like skin diseases and visual impairment, adding that that is why when they meet with these people, they make sure that they share the sun’s cream because most of those living in the regions cannot afford it.
“We share the sun’s cream to protect their skin and make sure that we have health practitioners that will talk to them on how to protect their skins.”
He added that because of the lack of melanin or black pigment, their skin is prone to sunburn. He said that those in the regions are more vulnerable that is why they are more concerned about them.
“Normally, when we do write our project, we do include the suns cream. We have implemented about three projects,” he said, adding that they are currently implementing a project entitled: Strengthening the albinism community in Sierra Leone. He informed that part of the project is sponsored by Open Society Initiative For West Africa (OSIWA). He said that whenever they write a project, they make provision for suns cream.
He said that they shared the cream last year, and they are planning to go to the provinces and share it again.
He said that they get the suns cream either through their donors or their own initiatives. “A few years ago, we initiated the albinism sun cream drive in which people send them to the foundation’s office,” he said, and added that the sun cream is very expensive and they could not afford it. “The cost of the sun cream varies, but the smallest size will be around Le 200 in Sierra Leone, that is why so many people cannot afford it,” he said.
He said that the only support that persons with albinism benefit from the Commission is the free tertiary education as stipulated in the Act. “When a person with albinism wants to enroll in any public university, we will first go to the Commission and the Commission will give us a letter which the person will take to the finance department of the said university, and at the end a person with albinism will pursue his or her course without paying a university fee,” he said. “But talking about financial support, it has not been happening. Also, for free medical, the Commission will give us a letter because there is no Disability Certificate but healthcare workers and doctors have not been honoring the said letters.
He added that there are a lot of provisions in the Act which have not been happening. “We have not received a certificate, and that is a major problem because when we go to the hospital the medical doctors or nurses will argue that we are not part of persons with disabilities. Over the years, about four of our colleagues have died of skin cancer because they went to the hospital but were not treated, and they have to die because they don’t have money to pay.”
He said that the Certificate is very critical, stating that when they travel overseas, other nationals with albinism will show their Certificate to prove that they are persons with albinism whilst they don’t have it in Sierra Leone.
He said that they have sent several proposals to the Commission and Ministry of Social Welfare, but neither the Ministry nor the Commission have funded any.
He added that their colleagues are dying in silence as a result of not having access to medical attention. He added that the hospitals lack a specialist in skin diseases [dermatologist], “I spoke with a friend who is a medical doctor regarding the issue of dermatologist, and the friend disclosed to me that there is no professional dermatologist in Sierra Leone.”
He called on the government to at least help assign a dermatologist to government hospitals so that the rate of persons with albinism dying of skin cancer will be reduced, adding that even if there is free medical, as long as the experts are not available, persons with albinism will continue dying of skin cancer.
He called on all and sundry to support persons with albinism. “We have launched the ‘Health Basket Fund’ which is at Access Bank to help persons with albinism,” he said. He said that recently, a young lady came to the Foundation with a severe eye problem, and they took her to Apex Optic where she is currently undergoing treatment. “So, the fund is used to support those who come to us for support.”
The Head of Communications National Commission for Persons with Disability (NCPD), Mawisie Dumbuya said that there are various kinds of disabilities under the Persons with Disability Act, “we have physical, mental, sensory and other long term impairment. Albinism falls under the sensory category,” he said.
“One of the challenges that Persons with albinism face is discrimination, before now, society found it difficult to accept persons with albinism, but that has changed through our continuous advocacy and sensitization, that myth is about to change,” he continued.
The challenges cut across every category of disabilities, Livelihood, capacity building, non-acceptance and the charitable approach that people are using, among others, he said
He added that before now, it was challenging for persons with albinism to access free medical because the nurses or some of the doctors were unaware of section 17 of the Act.
“Also, persons with albinism do have some difficulty in accessing their sun cream, but there are albinism groups that are working with external partners to come up with the creams and they tend to share some of these creams with the albinism community,” he reported.
“But, apart from that, with basic illnesses like Malaria, Typhoid, etc, they are well taken care of as per the provision of the Ac,” he said. “For now, the sun cream does not fall under the free healthcare drugs, but we are engaging the Ministry of Health on it,” he added.
According to him, the Government of Sierra Leone has also agreed to have sun cream in public hospitals, but it is in limited supply, noting that Sight Savers also provides glasses for persons with albinism to address their visual impairment. He informed that as a Commission, they cooperate with the Ministry of Health and other partners.
He explained that a person with albinism is currently suffering from cancer of the hair, and the Commission, the Ministry of Health, and other partners are working hard to see that they send her overseas for further treatment. “This is what we are doing as a government to see no one is left behind,” he commented.
He stated that the Government of Sierra Leone and its partners are working on the certification process for persons with disabilities. “A consultant has been hired by UNICEF, he has looked at the screening tool, he has also trained people, and very soon he will go into action and we will begin to certify persons with disabilities.”
He said that the President’s “BIG FIVE” captures persons with disabilities under human capital development, adding that the Commission will ensure that persons with disabilities are fully included in the seed Salone component. He added they are working with partners to ensure that the best persons with disabilities fit into the BIG FIVE.
He said that the current Act is being reviewed. He said that in the past twelve years, the Government of Sierra Leone had worked tremendously in raising awareness and building the capacity of persons with disabilities through free education, noting that more needs to be done in other to achieve.
The Chief Executive of the Campaign for Human Rights and Development International (CHRDI), Mr. Abdul M. Fatorma said that much has not been done to protect persons with albinism, particularly in the area of promoting their livelihoods and protecting them from skin cancer and visual impairment.
He said that they still face a lot of challenges in accessing free medical and discrimination. “The Persons with Disability Act of Sierra Leone does not place much emphasis on protection of persons with albinism and that is a concern for us as a human rights organization,” he said.
He urged the State to ensure that Albinos enjoy their rights to life and protection from their communities and relatives. “Persons with albinism who live in other advanced democracies are protected just like any other persons. There is no discrimination regardless of disabilities.”
He said that as a rights-based institution, they want the Government of Sierra Leone to ensure that persons with albinism are guaranteed all the necessary benefits enjoyed by persons with disabilities.
He said that much has not been done yet with regard compliance and enforceability of the Act, and the government has not done much in ensuring that citizens comply with the provisions of the Act.
“We believe that there should be a review of the Act, and ensure that we actually put issues of disability and urge citizens to accept persons with disabilities in the communities because there is a high level of discrimination,” he said.
Speaking on the disability certificate, he said, “I don’t think that is appropriate because it is another form of discrimination.” He added that there should be other means of identifying persons with disabilities rather than the issuance of certificates.
Alternatively, he suggested that the Commission and the Medical Board should create a database for persons with disabilities, noting that the Commission should work with the Medical Board to create a medical record [database] of every citizen so that when citizens who have disability issues go to the hospital, their records will be accessible.
In grading the government in terms of addressing disability issues on a scale of 1–10, he said, “If the lower grade is 2, then I will give the government one for passing the law, and if it is five, then I will give them four because compliance level is very low, punitive actions against those who discriminate against persons with disability is very low, the acceptance of persons with disability in our society is very low, the facilities from State institutions for persons with disability is very low.”
“If you go now to any of the public hospitals and ask if they have sun cream [protective cream] for persons with albinism, you will be told that it is not available,” he said.
In 2021, the Human Rights Commission of Sierra Leone (HRCSL) recommended in its State of H/Rights report that the Ministry of Health and Sanitation should ensure that Persons with Albinism are provided with specific health needs in all public healthcare facilities.
They also recommended that the Ministry of Social Welfare and the National Commission for Persons with Disability undertake a nationwide public education on inclusion and non-discrimination of persons with albinism.
By Stephen V. Lansana