Stop stigmatisation against learners living with albinism

Pupils with albinism receive caps to protect from the effects of harmful sun rays, Mombasa, November 2015. [File, Standard]

Albinism is a rare genetic condition that causes the lack of pigment in skin, hair, and eyes, sometimes accompanied by visual impairment. According to the 2019 census, 900000 Kenyans live with some form of disability. Of this, 9,729 are persons with albinism (PWA).

PWA face challenges that pose huge barriers that relegate them to a vicious cycle of poverty and exclusion, thus deterring them from realising their full potential. One of the areas where these challenges have been manifested is in the education sector where Learners with Albinism (LWA) are inhibited in achieving their academic goals.

Despite the recognition of education as a fundamental right and the commitment of Kenya to provide inclusive education without discrimination, the actual learning conditions of LWA have not been effectively explored. Documented shreds of evidence show that traditional classroom settings often fail to cater to the specific needs of LWA, leading to educational disparities and hindered academic progress.

Because of their visual impairments or low vision, LWA are limited in reaching developmental milestones due to restricted interactions with the environment. If their visual needs aren’t accommodated in the classroom, it will affect their ability to learn effectively. Teachers should consider using appropriate learning resources, assistive technologies, and supportive teaching strategies that make the classroom environment accommodative of the visual challenges of this group.

LWA are vulnerable to the sun due to lack of melanin. The effects of the sun on their skins are sunburns, dryness, and chapping on the lips. The important use of sunscreen lotions, after-sun lotions, and lip balms as a primary strategy to prevent damage caused by ultraviolet rays on LWA must be emphasised by the teachers at the school level. Teachers should accommodate appropriate classroom setups, including seating arrangements that will protect them from exposure to sunlight and allow them to wear appropriate protective clothing.

Their vulnerability to the sun, visual acuity, and efficiency impede their full participation in extracurricular and other outdoor activities, resulting in social isolation. Extracurricular activities contribute to learners’ well-rounded educational experiences. For LWA to earn the benefits of these activities, teachers should schedule such activities at suitable times and in the least restrictive environment that can accommodate their participation.

Stigmatisation of learners with albinism in the school environment is propagated and advanced by the use of demeaning labels by their peers. Teachers should  instill disability etiquette in all learners and discourage labels such as ‘albino’ and ‘mzungu’ that are meant to disdain this group.

Emerging research suggests that LWA tend to be more withdrawn from social affairs. This was brought about by reported cases of ritual attacks necessitated by pervasive myths and misconceptions that their life or body parts can easily be exchanged for another’s good fortune. Due to this fear, their self-esteem is affected. This significantly affects their enrollment, attendance, and completion. The government must re-double its effort and heavily invest in aggressive awareness creation campaigns within and outside the school setup to end this vice.

-Mr. Godana is disability and social protection specialist.