A/HRC/43/42 53. In some cases, health professionals will not attend to persons with albinism, believing that they are foreigners who cannot speak the local language and preferring to address a family member or a companion instead.63 For women, this sometimes means that the presence of a companion is mandatory or makes things easier, even during personal appointments, such as gynaecological check-ups. This lack of privacy and dignity deters women from accessing sexual and reproductive health services, which are highly sensitive in nature. 54. In some instances, women with albinism who get pregnant are encouraged to abort the baby on the grounds that their baby will be born with albinism. 64 Some health providers reportedly find it strange, when dealing with women with albinism who are seeking maternity services, family planning or other consultations relating to sexual and reproductive health, that a woman with albinism has had sexual relationships. 65 5. Access to information and meaningful participation in decisions that affect women and children impacted by albinism 55. Lack of education is one of the main obstacles that women with albinism face in obtaining information, including about their rights. The inaccessible format of pertinent information is also a critical challenge, for instance, information that is not compatible with adaptive or assistive devices.66 Language barriers are also a challenge, including the use of technical and complex terminology that many persons with albinism cannot understand due to their level of education. 67 The fact that women impacted by albinism are at a heightened risk of social isolation and ostracism also results in inadequate access to information on an equal basis with others. This results in a lack of participation in the spheres of life where such information is essential, including health, education, employment and family life. 56. Several submissions indicate that women with albinism are largely absent from decision-making forums that concern them. 68 Moreover, platforms to ensure meaningful engagement of women with albinism, particularly in decisions that affect them, are generally non-existent. Meaningful participation enables the advancement of all human rights. It plays a crucial role in the promotion of democracy, the rule of law, social inclusion and economic development and is essential for reducing inequalities and social conflict. 69 As such, the meaningful participation of women and children impacted by albinism is crucial to the realization of their rights. 57. While the number of civil society organizations representing persons with albinism is growing, these organizations often do not know about or use a human rights-based approach. That said, these groups are considered critical platforms in which persons with albinism can advocate for their interests, including their rights. However, the extent to which issues affecting women and children impacted by albinism are adequately captured in such settings is not clear. There is also little to no information on whether women hold decision-making positions in those platforms or whether there are deliberate mechanisms to allow for their participation in decision-making. 58. In Eswatini, persons with albinism are sometimes unable to participate in public and political engagements at the community level because of health risks. The prevailing culture dictates that wearing a hat is disrespectful when going to community meetings, which are usually conducted outdoors in the sun.70 A similar situation was reported to the 63 64 65 66 67 68 69 70 Submission from Colombia. This is due to the distinct appearance of a person with albinism – a pale complexion is associated with foreigners. Ibid. Submission from Venezuela (Bolivarian Republic of). Submissions from Colombia, Malawi, United Republic of Tanzania, Zambia and Zimbabwe. Submission from Eswatini. Submissions from Eswatini, Malawi, Mozambique, Nigeria, Somalia and United Republic of Tanzania. See the guidelines for States on the effective implementation of the right to participate in public affairs. Submission from Eswatini. 11