3. WELFARE & SOCIAL PROTECTION (WSP)
Focuses on addressing fundamental, health, education and gender issues that are unique to Persons with albinism and further enlightening and linking them and their families to existing programs, frameworks and policies that address their albinism related needs.
a) Health & Albinism
This Project addresses the very significant health needs of persons with albinism which are eye care & skin care , however due to myths and misconceptions the issue of HIV & albinism has become an emerging issue that needs to be addressed.
The absence of melanin in the skin and eyes of PWA give rise to health challenges in relation to their skin and eyesight which many are unable to deal with. Failure to deal with these health challenges, where they relate to the skin, often has fatal consequences.
As noted above, the absence of melanin in the skin means that PWA are very sensitive to UV radiation, and they need to take care of their skins to avoid sun damage. Protection from the sun involves the use of sun screens with a high SPF and use of protective clothing such as hats, long pants and long sleeved shirts. The inability of PWA to care for their skin may lead to development of skin cancer which, untreated, can prove fatal. A combination of factors is responsible for the inability of PWA to take care of their skin- the most notable being the cost of sun screen lotions, and the lack of awareness of the dangers of exposure to the sun.
Although many PWA have visual limitations, they can still read and study in regular educational institutions - they just need larger print or magnifiers to help them. Due to the misconceptions about the visual abilities of PWA, over 90% of children with albinism in Kenya attend schools for the visually impaired at primary school level.
With the spread of HIV/Aids has come an increase in the incidences of rape of women with albinism by HIV infected males in some part of Kenya . This increase has reportedly been fueled by yet another superstitious belief-that sex with a PWA can cure HIV. The social exclusion, misunderstanding and stigmatization that is the lot of many PWA means that many PWA never get to exploit their full potential as human beings, and are thus often at the bottom of the social economic ladder. This, in turn, compounds the difficulties that relate to the health challenges that PWA have to contend with.
b) Education Rescue
This project aims at ensuring early intervention for learners with albinism and provision of both financial and non-financial resources for person with albinism to enable them access quality education in main stream Access to any or quality education for CWA is constrained by the negative social perceptions of albinism. While some communities or families do not take CWA to school, those who attend school do so in an environment that is completely oblivious of their special learning needs. The learning environment is hostile, with the CWA subjected to taunts and insults by their peers. Teachers are not sensitized and trained to handle their needs so they are often insensitive and dismissive of the abilities of CWA.
Children with albinism are usually enrolled in special schools, such as schools for the blind, even in cases where they are not legally blind. At these schools, some of them are taught braille and are therefore not enhancing the use of their total or residual vision. Many persons with albinism or parents of CWA still prefer to attend these schools for various reasons from security to acceptance as well as understanding from teachers and students alike. These are elements which are – for the most part – not present in the mainstream schools even though Kenya has adopted an inclusive education policy. Despite the free primary education in Kenya, still there is a boarding fee at special schools, amounting to 26.000 Kenyan Shillings (260 US Dollars) per year. An overwhelming majority of persons with albinism are poor and some parents of CWA are extremely poor and therefore unable to attend these schools. Although there is a Cash Transfer Program for financially supporting persons with severe disability who are financially challenged, the program is generally not applied to persons with albinism even though the criteria for qualifying is open and includes persons with disabilities who report living in danger. Without the requisite support, many with albinism are forced to go to mainstream schools where there is no reasonable accommodation and sometimes (severe) bullying occurs.
Those CWA who attend regular learning institutions are unable to keep up with the rest of the class due to the lack of understanding by teachers, and unable to cope with national examinations which do not cater for their special needs- being set either in Braille for the blind or in normal sized print for those with normal vision. The ‘in-between’ situation of CWA means that their needs are not addressed within the current education system.
b) Rare Voices
Rare Voices is a project aimed at highlighting the intersection of Gender and albinism and create a safe space for women impacted by albinism to addresses their gender and albinism specific needs.