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Tag: Albinism

  • Albinos still endure discrimination – GAPA

    Albinos still endure discrimination – GAPA

    Executive Director for the Ghana Association of Persons with Albinism (GAPA), Newton Kwamla Katsekuhas revealed that individuals with albinism continue to confront a range of challenges including discrimination, stigmatization, denials, and societal rejection.

    “People with albinism are confronted with unemployment challenges based on their health condition and not their qualifications, denial of marriage, and other health disadvantages in society,” Mr. Kasteku told the Ghana News Agency in an interview in Tema as the association marks the 2023 International Albinism Awareness Day.

    International Albinism Awareness Day is celebrated annually on June 13th to celebrate the human rights of people with albinism worldwide. Albinism is a rare, non-contagious, genetically inherited difference present at birth.

    Kasteku called on the government to include sun care products, dermatological, and optical services on the National Health Insurance Scheme (NHIS), mainstream albinism at all levels of the education system, and help the association obtain a reliable and accurate database of all persons with albinism in the country.

    He also called on employers and the larger society to focus on the strengths and achievements of persons with albinism rather than the myths surrounding the condition.

    Katseku explained that this year the international community is focusing on “Inclusion is Strength” as the global theme to create awareness and advocate for a change of attitude towards people with albinism.

    He explained that albinism is a genetic condition caused by genes affecting the body’s amount of melanin.

    Adding to that, the word “albino” involves both animals, plants, and humans races that lack melanin, and hence, the condition that brought about the lack of pigmentation (melanin) in humans is called “albinism”.

    “When it comes to the human race, one is first identified as a person before albinism is detected. So in a good context, it is preferable to say “a person with albinism and not albino,” he said.

    He explained that the condition affected the hair, eyes, and entire skin, and depending on the level of pigmentation, it could include blood disorders, bruising issues, lung and kidney diseases.

    “Before a child with albinism can be born, either of the two parents must be carriers. In effect, there must be a recessive and dominant gene,” he said.

    Kasteku noted that people with albinism can be categorized under the disability community because of how the condition affects their full function in relation to vision impairment and skin diseases that cause body irritation and result in skin cancer.

    He revealed that GAPA was visible in all 16 regions with a few districts visibility and has recorded 2,744 registered persons with albinism in Ghana this year.

    He also described how the awareness rate of albinism had grown since February 2003 and commended the media for its advocacy role in demystifying the myths associated with the condition.

    According to him, people with albinism usually wore wide protective hats to cover the head, sunglasses to protect the eyes, protective cloths to cover the body and apply maximum skincare products to prevent the skin from drying and sun rays.

  • The musician with albinism who caught Madonna’s attention

    Malawian Lazarus Chigwandali has faced many hardships in life because he was born with albinism but his passion for music brought him international fame and Madonna’s attention.

    Born into a family of farmers in Dedza, central Malawi, Lazurus’s parents had five children and his younger brother was also born with albinism. The condition affects the production of the pigment that gives skin, hair and eyes their colour and also means that skin burns very easily.

    “Our parents tied us on their backs when they worked in the fields. After a day in the sun, our whole bodies were full of blisters,” he told the BBC.

    “We couldn’t afford sun cream, so our parents took the decision to literally lock me and my brother in the house to protect us from the sun.”

    When Lazarus and his brother did go out, the other children threw stones at them, thinking they would catch albinism. Because of this deep-rooted discrimination, Lazarus’s brother Peter knew they would never be able to get work like other people in the village and he suggested they forge a path in music together.

    They had no instruments, so they made their own and started to get noticed performing in the local village. Sadly, Peter developed skin cancer and died when he was 12. Lazarus was devastated, but decided to play on alone.

    Many people in Malawi and other East African countries wrongly believe that the body parts of people with albinism can bring wealth or good luck. People with albinism are frequently abducted, murdered or mutilated to supply this grisly trade. It’s something that Lazarus has witnessed first-hand.

    “One time when I was performing outside a mall, a woman came past driving a nice car. She said her husband would pay me to do an album of 10 songs and he’d pay 1m kwacha ($973; £825) for each song.”

    Lazarus got in the car to meet her husband and whilst waiting in the car, a maid from the house came out and told him she had overheard the couple making plans to sell him in neighbouring Tanzania. She told him his life was in danger if he didn’t get out, so he ran.

    Lazarus’s love for music finally paid off when a passing NGO worker videoed him busking and posted it online. It was shared around the world and seen by a UK-based record producer who then recorded an album with Lazarus, bringing him international attention.

    He went on to perform for Madonna and at Malawi’s international Lake of Stars music festival.

    “Meeting Madonna and watching her perform was an eye opener in many ways, but perhaps the biggest thing for me is just sleeping in my own house that has iron sheets above my head. That has brought me such a deep joy, it’s unimaginable.”

    Source: BBc.com 

  • Include us in population census – Persons with Albinism appeal

    The Ghana Association of Persons with Albinism (GAPA) has appealed to the Ghana Statistical Service (GSS) to include its members in the upcoming Population and Housing Census.

    It said the GSS clustered all persons with disability into one group instead of segregating them for easy identification and targeting for effective planning.

    “We cannot group all persons with disability as one, we need to segregate them in groupings like albinism group, deaf group, blind group, physically disabled group etc to get an accurate database,” the Association said.

    Mr Newton Kwabla Katseku, the Executive Director, GAPA, in an interview with the Ghana News Agency, said the country did not have an accurate percentage of disabilities as it relied on generalisation than actual figures, which was not the best practice.

    He said the Association was part of the processes in developing the data collection tool for the census from the beginning but when the final draft came out, it realised that not all the groups of disability were captured in the tool, especially persons with albinism.

    “We are not happy about our neglect because we wanted to have accurate data of persons with albinism to ensure timely dissemination of information and continuous provision of support services,” he said.

    Mr Katseku said disability was not only about being physically disabled, blind or deaf and that proper definition and classification was needed for reliable and accurate data for planning.

    He said the country had over nine groupings of disabilities but the GSS allegedly concentrated on only three, neglecting persons with albinism.

    The GSS on Monday started numbering structures as part of the Population and Housing Census scheduled to start on June 28, 2021.

    Source: GNA