Exploring the experiences of persons living with albinism in Ghana

References

• Aborisade, R. A. (2021). Why always me?: Childhood experiences of family violence and prejudicial treatment against people living with albinism in Nigeria. Journal of Family Violence, 36(8), 1081–1094. https://doi.org/10.1007/s10896-021-00264-7
   PubMed Web of Science ®Google Scholar
• ACHPR (1986). African (Banjul) charter on human and peoples’ rights. (Adopted 27 June 1981, OAU Doc. CAB/LEG/67/3 rev. 5, 21 I.L.M. 58 (1982), entered into force 21 October 1986). art 2.
   Google Scholar
• Adogla-Bessa, D. (2019). Persons with albinism petition CHRAJ over discrimination. Citi Newsroom, June 15. Retrieved November 1, 2021, from https://citinewsroom.com/2019/06/persons-with-albinism-petition-chraj-over-discrimination/?fbclid=IwAR1e6f1WAAKWXP57chzUr8AwQGRvV2xaXN-hBOfTX7GJpAUPa089NMbzZqc
   Google Scholar
• Adonai StudiosGH (2020a, July 12). My colour, albinism documentary 2020, Thisability Episode 10 [video]. Retrieved November 10, 2021, from https://www.youtube.com/watch?v=alu2g30CQKs&t=12s
   Google Scholar
• Adonai StudiosGH (2020b, December 3). Albinism in Ghana, Thisability Episode 12 [video]. Retrieved October 20, 2021, from https://www.youtube.com/watch?v=FO4o3mRb55g See also https://www.facebook.com/dakloandrews/posts/2293103764100934:10 https://www.facebook.com/dakloandrews/posts/10214772660609957:39
   Google Scholar
• Affram, A. A., Teye-Kwadjo, E., & Gyasi-Gyamerah, A. A. (2019). Influence of social stigma on subjective well‐being of persons with albinism in Ghana. Journal of Community & Applied Social Psychology, 29(4), 323–335. https://doi.org/10.1002/casp.2403
   Web of Science ®Google Scholar
• Akoyam, F. (2015). Unwanted: How albinos are killed for rituals in Ghana. JoyNews, May 1. Retrieved October 20, 2021, from http://www.myjoyonline.com/news/2015/May-1st/unwanted-how-albinos-are-killed-for-rituals-in-ghana.php
   Google Scholar
• Antwi, K. J. (2018). Shocking; Residents troop to watch obituary poster of an albino for the first time. Prime News Ghana, June 22. Retrieved November 1, 2021, from https://www.primenewsghana.com/general-news/shocking-kadjebi-residents-troop-to-watch-obituary-poster-of-albino.html
   Google Scholar
• Arnold, D. G. (2010). Transnational corporations and the duty to respect basic human rights. Business Ethics Quarterly, 20(3), 371–399. https://doi.org/10.5840/beq201020327
   Web of Science ®Google Scholar
• AU (2018). Protocol to the African charter on human and peoples’ rights on the rights of persons with disabilities in Africa. art 5, 8, 9, 10, 11 and 14.
   Google Scholar
• Baker, C., Lund, P., Nyathi, R., & Taylor, J. (2010). The myths surrounding people with albinism in South Africa and Zimbabwe. Journal of African Cultural Studies, 22(2), 169–181, 172–174. https://doi.org/10.1080/13696815.2010.491412
   Web of Science ®Google Scholar
• Beitz, C. R. (2009). The idea of human rights. OUP Oxford.
   Google Scholar
• Benyah, F. E. K. (2017). Equally able, differently looking: Discrimination and physical violence against persons with albinism in Ghana. Journal for the Study of Religion, 30(1), 161–188. https://doi.org/10.17159/2413-3027/2017/v30n1a7
   Google Scholar
• Benyah, F. E. K. (2023). Are albinos people like us? Albinism and social exclusion in Ghana. In Contemporary discourses in social exclusion (pp. 143–170). Springer International Publishing.
   Google Scholar
• Bradbury-Jones, C., Ogik, P., Betts, J., Taylor, J., & Lund, P. (2018). Beliefs about people with albinism in Uganda: A qualitative study using the common-sense model. PLOS One, 13(10), e0205774. https://doi.org/10.1371/journal.pone.0205774
   PubMed Web of Science ®Google Scholar
• Brocco, G. (2015). Labeling albinism: Language and discourse surrounding people with albinism in Tanzania. Disability & Society, 30(8), 1143–1157. https://doi.org/10.1080/09687599.2015.1075869
   Web of Science ®Google Scholar
• Brocco, G. (2016). Albinism, stigma, subjectivity and global-local discourses in Tanzania. Anthropology & Medicine, 23(3), 229–243. https://doi.org/10.1080/13648470.2016.1184009
   PubMed Web of Science ®Google Scholar
• Bufacchi, V. (2012). Social injustice: Essays in political philosophy. Palmgrave Macmillan.
   Google Scholar
• Burke, J., Kaijage, T. J., & John-Langba, J. (2014). Media analysis of albino killings in Tanzania: A social work and human rights perspective. Ethics and Social Welfare, 8(2), 117–134. https://doi.org/10.1080/17496535.2014.895398
   Google Scholar
• CESCR (2013). General Comment 13: The Right to Education (Art. 13). Adopted at the Twenty-first Session of the Committee on Economic, Social and Cultural Rights, on 8 December 1999. Contained in Document E/C.12/1999/10.
   Google Scholar
• Cinnamon, J. (2017). Social injustice in surveillance capitalism. Surveillance & Society, 15(5), 609–625. https://doi.org/10.24908/ss.v15i5.6433
   Web of Science ®Google Scholar
• Costin, G. E., & Hearing, V. J. (2007). Human skin pigmentation: Melanocytes modulate skin color in response to stress. The FASEB journal, 21(4), 976–994.
   PubMed Web of Science ®Google Scholar
• Creswell, J. W. (2013). Data collection. Qualitative inquiry and research design: Choosing among five approaches (3rd ed.). Sage.
   Google Scholar
• Cruz-Inigo, A. E., Ladizinski, B., & Sethi, A. (2011). Albinism in Africa. Stigma, slaughter and awareness campaigns. Dermatologic Clinics, 29(1), 79–87. https://doi.org/10.1016/j.det.2010.08.015
   PubMed Web of Science ®Google Scholar
• David, C. V. (2013). Oculocutaneous albinism. Cutis, 91(5), E1–E4.
   PubMedGoogle Scholar
• Durojaye, E., & Owoeye, Y. (2017). Equally unequal or unequally equal. Adopting a substantive equality approach to gender discrimination in Nigeria. International Journal of Discrimination and the Law, 17(2), 70–85.
   Google Scholar
• Emadi, S. M., Suleh, A. J., Babamahmoodi, F., Ahangarkani, F., Chelimo, V. B., Mutai, B., Raeeskarami, S. R., Ghanadan, A., & Emadi, S. N. (2017). Common malignant cutaneous conditions among albinos in Kenya. Medical Journal of the Islamic Republic of Iran, 31, 3. https://doi.org/10.18869/mjiri.31.3
   PubMedGoogle Scholar
• ENA (2020). Engage Now Africa (ENA) Albino sensitization Nabu, Oti Region Ghana. Retrieved November 1, 2021, from https://www.youtube.com/watch?v=3mxM7eiE1Cc
   Google Scholar
• Ero, I., Muscati, S., Boulanger, A., & Annamanthadoo, I. (2021). People with albinism worldwide, A human rights perspective. Retrieved November 10, 2021, from https://www.ohchr.org/Documents/Issues/Albinism/Albinism_Worldwide_Report2021_EN.pdf
   Google Scholar
• Fiagbedzi, E. W., & Ahadzie, C. (2004). Radiotherapy in cancer treatment in Ghana: From the past to present. Retrieved November 11, 2021, from: https://humanhealth.iaea.org/HHW/RadiationOncology/ICARO2/E-Posters/04_FIAGBEDZI.pdf
   Google Scholar
• Franklin, A., Lund, P., Bradbury-Jones, C., & Taylor, J. (2018). Children with albinism in African regions: Their rights to ‘being’ and ‘doing’. BMC International Health and Human Rights, 18(1), 2. https://doi.org/10.1186/s12914-018-0144-8
   PubMedGoogle Scholar
• GAPA (2019). Ritual banishment and stigmatization of persons with albinism in Ghana, A contextual analysis report. Ghana Association of Persons with Albinism (GAPA). Retrieved November 8, 2021, from: https://actiononalbinism.org/api/files/1564577071633r4nwvrgc26e.pdf
   Google Scholar
• Ghana 1992 (rev. 1996). Constitution of Ghana art 26 (1&2). Ghana’s Constitution of 1992 with Amendments through 1996.
   Google Scholar
• GhanaWeb (2015). Albinos banished from Atebubu. Retrieved November 5, 2021, from https://www.ghanaweb.com/GhanaHomePage/NewsArchive/Albinos-banished-from-Atebubu-361085
   Google Scholar
• Grad, F. P. (2002). Public health classics. Bulletin of the World Health Organization, 80(12).
   PubMed Web of Science ®Google Scholar
• Grønskov, K., Ek, J., & Brondum-Nielsen, K. (2007). Oculocutaneous albinism. Orphanet Journal of Rare Diseases, 2(1), 43. https://doi.org/10.1186/1750-1172-2-43
   PubMedGoogle Scholar
• Haudenhuyse, R. (2017). Introduction to the issue “sport for social inclusion: Questioning policy, practice and research”. Social inclusion, 5(2), 85–90.
   Web of Science ®Google Scholar
• Hong, E. S., Zeeb, H., & Repacholi, M. H. (2006). Albinism in Africa as a public health issue. BMC Public Health, 6(1), 212. https://doi.org/10.1186/1471-2458-6-212
   PubMedGoogle Scholar
• Houdek, L. (2019). As an albino child, they wanted to sacrifice her, and the family had to flee. Hatefree Culture, January 30. Retrieved November 9, 2021, from https://www.hatefree.cz/clanky/kralovna-helena
   Google Scholar
• Kiluwa, S. H., Yohani, S., & Likindikoki, S. (2022). Accumulated social vulnerability and experiences of psycho-trauma among women living with albinism in Tanzania. Disability & Society, 39(2), 400–421. https://doi.org/10.1080/09687599.2022.2072706
   Web of Science ®Google Scholar
• Kossoff, J. (2020). People with albinism are being blamed for the spread of the coronavirus in Africa because of their ‘whiteness’. Business Insider, June 13. Retrieved November 1, 2021, from https://www.businessinsider.com/coronavirus-africans-with-albinism-are-blamed-because-of-whiteness-2020-6?IR=T
   Google Scholar
• Lekalakala, P. T., Khammissa, R. A. G., Kramer, B., Ayo-Yusuf, O. A., Lemmer, J., & Feller, L. (2015). Oculocutaneous albinism and squamous cell carcinoma of the skin of the head and neck in sub-Saharan Africa. Journal of Skin Cancer, 2015, 167847. https://doi.org/10.1155/2015/167847
   PubMedGoogle Scholar
• Levy, J. T. (2019). Social injustice and spontaneous orders. The Independent Review, 24(1), 49–62.
   Web of Science ®Google Scholar
• Lund, P. M., & Taylor, J. (2008). Lack of adequate sun protection for children with oculocutaneous albinism in South Africa. BMC Public Health, 8(1), 225. https://doi.org/10.1186/1471-2458-8-225
   PubMedGoogle Scholar
• Machoko, C. G. (2013). Albinism: A life of ambiguity–A Zimbabwean experience. African Identities, 11(3), 318–333. https://doi.org/10.1080/14725843.2013.838896
   Google Scholar
• Malik, F., Abduladjid, S., Mangku, D. G. S., Yuliartini, N. P. R., Wirawan, I., & Mahendra, P. R. A. (2021). Legal protection for people with disabilities in the perspective of human rights in Indonesia. International Journal, 10, 539.
   Google Scholar
• Marçon, C. R., & Maia, M. (2019). Albinism: Epidemiology, genetics, cutaneous characterization, psychosocial factors. Anais Brasileiros de Dermatologia, 94(5), 503–520. 2019 https://doi.org/10.1016/j.abd.2019.09.023
   PubMed Web of Science ®Google Scholar
• Mouton, J. (2008). How to succeed in your master’s and doctoral studies (12th ed.). Van Schaik.
   Google Scholar
• Muganiwa, J. (2020). What have we done? A case study in embracing people with disabilities in Ben Hanson’s Takadini and Alumenda’s Anani the albino boy. Journal of African Languages and Literary Studies, 1(1), 93–106. https://doi.org/10.31920/2633-2116/2020/1n1a5
   Google Scholar
• News360 (2021, June 12). Tackling stigma against Albino. TV3 Ghana. Retrieved September 1, 2021, from https://www.facebook.com/TV3GH/videos/319502449804618
   Google Scholar
• NHIS (2015). National Health Insurance Scheme (NHIS) benefit package. Retrieved September 1, 2021, from http://www.nhis.gov.gh/benefits.aspx
   Google Scholar
• NOAH (2021). What is albinism. National Organisation for Albinism and Hyperpigmentation (NOAH). Retrieved October 20, 2021, from https://www.albinism.org/information-bulletin-what-is-albinism/
   Google Scholar
• Ocloo, M. A., & Subbey, M. (2008). Perception of basic education school-teachers towards inclusive education in the Hohoe District of Ghana. International Journal of Inclusive Education, 12(5–6), 639–650. https://doi.org/10.1080/13603110802377680
   Web of Science ®Google Scholar
• Ojilere, A., & Saleh, M. M. (2019). Violation of dignity and life: Challenges and prospects for women and girls with albinism in sub-Saharan Africa. Journal of Human Rights and Social Work, 4(3), 147–155. https://doi.org/10.1007/s41134-018-0085-0
   Web of Science ®Google Scholar
• Okulicz, J. F., Shah, R. S., Schwartz, R. A., & Janniger, C. K. (2003). Oculocutaneous albinism. Journal of the European Academy of Dermatology and Venereology, 17(3), 251–256. https://doi.org/10.1046/j.1468-3083.2003.00767.x
   PubMed Web of Science ®Google Scholar
• Phatoli, R., Bila, N., & Ross, E. (2015). Being black in a white skin: Beliefs and stereotypes around albinism at a South African University. African Journal of Disability, 4(1), 106–107. https://doi.org/10.4102/ajod.v4i1.106
   PubMedGoogle Scholar
• Ratification of the African Charter on the Rights and Welfare of the Child (1990). Law No. 7/2008, Adopted by the 26th Ordinary Session of the Assembly of Heads of State and Government of the OAU Addis Ababa, Ethiopia.
   Google Scholar
• Sajid, Z., Yousaf, S., Waryah, Y. M., Mughal, T. A., Kausar, T., Shahzad, M., Rao, A. R., Abbasi, A. A., Shaikh, R. S., Waryah, A. M., Riazuddin, S., & Ahmed, Z. M. (2021). Genetic causes of oculocutaneous albinism in Pakistani population. Genes, 12(4), 492. https://doi.org/10.3390/genes12040492
   PubMed Web of Science ®Google Scholar
• Saka, B., Akakpo, S. A., Teclessou, J. N., Gnossike, P., Adam, S., Mahamadou, G., Kassang, P., Elegbede, Y., Mouhari-Toure, A., Darre, T., Kombate, K., & Pitché, P. (2019). Skin cancers in people with albinism in Togo in 2019: Results of two rounds of national mobile skin care clinics. BMC Cancer, 21(1), 26. https://doi.org/10.1186/s12885-020-07747-8
   Web of Science ®Google Scholar
• Smith-Asante, E. (2018). Only 23 dermatologists in Ghana; Rabito plans a rescue Graphic Online. Retrieved November 11, 2021, from https://www.graphic.com.gh/news/health/only-23-dermatologists-in-ghana-rabito-plans-a-rescue.html
   Google Scholar
• The Anatomy Law (2010). The Fifth Revised Edition of the Laws of Malawi (L.R.O. 1/2018).
   Google Scholar
• The Persons with Disabilities Act (2010). The United Republic of Tanzania’s workplace policies. Retrieved February 12, 2022, from https://www.ilo.org/dyn/natlex/natlex4.detail?p_isn=86525&p_lang=en
   Google Scholar
• Thompson-Hernández, W. (2018). The albino community in Ghana: I’m motivated to believe that I can survive. The New York Times, June 9. Retrieved November 12, 2021, from https://www.nytimes.com/2018/06/09/world/africa/living-with-albinism-in-ghana.html
   Google Scholar
• UNCRPDOP (2006). United Nations Convention on the Rights of Persons with Disabilities and Optional Protocol. art 5, 10 14, 15 and 19.
   Google Scholar
• UNGA (2021). Elimination of harmful practices related to accusations of witchcraft and ritual attacks. United nations General Assembly (UNGA), A/HRC/47/L.9.
   Google Scholar
• United Nations General Assembly Resolution 69/170 (2014). Official Records of the General Assembly. Sixty-eighth Session, Supplement No. 53 (A/68/53).
   Google Scholar
• UTSS (2015). The civil and political rights of Ghanaians with albinism. Under the Same Sun (UTSS) contribution to CCPA list of issues prior to reporting: Ghana. Retrieved October 20, 2021, from https://tbinternet.ohchr.org/Treaties/CCPR/Shared%20Documents/GHA/INT_CCPR_ICO_GHA_21939_E.pdf
   Google Scholar
• Vanderpuye, V., & Aryeetey, N. A. (2016). Cancer radiotherapy in Ghana. Cancer Control. Retrieved November 10, 2021, from http://www.cancercontrol.info/cc2016/cancer-radiotherapy-in-ghana/
   Google Scholar
• Wan, N. (2003). Orange in a world of apples: The voices of albinism. Disability and Society, 18(3), 277–296. https://doi.org/10.1080/0968759032000052860
   Web of Science ®Google Scholar
• Žukauskas, P., Vveinhardt, J., & Andriukaitienė, R. (2018). Research ethics, management culture and corporate social responsibility. Retrieved October 29, 2021, from https://www.intechopen.com/books/management-culture-and-corporate-social responsibility/research-ethics
   Google Scholar