31 March, 2022
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Olive and Kituyi
Photo: Ms Olive Namutebi, Executive Director- Albinism Umbrella at the Commemoration of the International Albinism Awareness Day 2021

(Fort Portal City) 18 Dec. 2021:- The International Albinism Awareness Day Commemoration 2021 under the  theme; “Not all disabilities are visible; Strength beyond All Odds”, was supported by the Office of the High Commissioner for Human Rights (OHCHR) with the core objective of raising awareness and advocating for the inclusion of persons with albinism in development programs. The theme was also chosen to highlight the virtuous qualities of persons with albinism around the world and show that they were made to defy all odds, as well as celebrate how people with albinism worldwide meet and exceed expectations in all domains of life.

Ms Florence Epodoi, the Human Rights Officer at OHCHR, while sharing opening remarks on behalf of the OHCHR Country Representative, stated that the office had been tirelessly working with various partners such as the Parliament of Uganda, Ministry of Gender Labour & Social Development, Equal Opportunities Commission and other stakeholders to support the albinism community in Uganda and create more awareness through promoting their human rights.

“As we highlight invisible disabilities in this commemoration, OHCHR reaffirms that everyone has a right to life, liberty, and security regardless of the form of disability and no one shall be subjected to torture or cruel inhuman or degrading treatment. Strength beyond all odds being the theme for this year, the persons with disabilities present have demonstrated that despite any form of disability, we can continuously persist against odds and excel in everything. I encourage all of us to emulate their character and learn from them,” Ms Florence added.

Ms Florence Epodoi, Human Rights Officer, OHCHR
Ms Florence Epodoi, Human Rights Officer - OHCHR

While concluding her remarks, Ms Epodoi called upon everybody to teach young ones about equality and non-discrimination. She advised them to situate themselves as advocates and ambassadors for the rights of persons with albinism in whichever spaces they are engaged in. 

On 28 December, 2014, the United Nations General Assembly adopted a resolution proclaiming June 13th as International Albinism Awareness Day to stop the brutalities against people with albinism. In response to the call from Civil Society Organizations advocating for consideration of persons with albinism as a specific group with particular needs that require special attention, on 26 March 2015 the Council created the mandate of the Independent Expert on the enjoyment of human rights by persons with albinism.

Ms Olive Namutebi, Executive Director  Albinism Umbrella welcomed all participants and appreciated them for accepting the invitation to the Day’s celebration. She expressed her gratitude to United Nations Human Rights for always supporting the albinism community to organize their day and appreciated the Ministry of Gender Labour & Social Development for coming on board. Ms Namutebi was excited about holding a physical meeting and added that the audience could have been more enormous if it wasn’t for the limitations caused by various COVID-19 related constraints.
"Sunscreens for persons with Albinism can be equated to ARVs for persons living with HIV/AIDS. It is a vital ingredient to our lives, we are less than one million Ugandans living with albinism, through your Ministry our Chief guest, this is our plea that we would want sunscreens to be produced in Uganda,” Olive Namutebi appealed.

The Albinism Umbrella in partnership with UN Human Rights identified persons with albinism to share their experience in relation to the year’s theme of Strength Beyond All Odds. The purpose of this was to build confidence, courage and self-esteem among their fellow peers. Ms Peninah Loyce Kituyi, a recent graduate of Makerere University with a first-class degree in Arts with Education majoring in Literature and English said that she believes that self-valuation, realization and determination made her defy all odds and make it to the top throughout her academic journey. Peninah won scholarships right from primary up to the university where she was admitted on government sponsorship as well.  “I was stormed and shaken by negativity, stigma, and hate speech which I successfully overcame with the remarkable and dependable support of my parents. Visual impairment also became another challenge because I was reading so extensively that I almost lost my eyesight,” Peninah testified.

Due to her passion for Albinism, Peninah intends to use her profession as a teacher to create awareness about albinism as she will be meeting people from all walks of life. She also aspires to study linguistics and become a Professor of Linguistics at the great University of Oxford in the United Kingdom. 
She concluded by calling upon parents to show unconditional love and support to their children with albinism and advising learners to read hard, keep in school and believe in themselves despite their disability.

Ms Lydia Musekweri, another graduate with Bachelor’s degree in social work and social administration from Makerere University shared her testimony. She is the District Counselor representing persons with disabilities as well as a State Minister of Gender in Butalejja District. 
“I would like to encourage my fellow persons with albinism, to build up their self-esteem and self-determination so that the community can observe your value,” Lydia concluded.

Dr. Richard Mugahi, the Commissioner of Reproductive Health, represented the Minister for Primary Health Care and the area member of Parliament as the chief guest at the commemoration event.

“Albinism is one of the invisible disabilities due to its complex nature, stigma and discrimination associated with it. Different health challenges cannot let persons with albinism work for long hours under the sun as it causes skin cancer, their sight cannot permit them to read clearly, thus the need for protective gear.” Dr Richard stated.

“However, it should be noted that albinism is just a condition and not a disease, do not fear sitting close or associating with them. We are here to create awareness,” he concluded.

Dr. Richard
Dr. Richard Mugahi, Commissioner, Reproductive Health, Ministry of Health. 

Dr. Richard successfully lobbied for over 20 doses of Johnson and Johnson from Fort Portal main hospital and used this platform to sensitize participants on the importance of COVID-19 vaccination while urging them to get vaccinated. Over twenty (20) participants led by Ms. Namutebi – Executive Director of Albinism Umbrella were vaccinated.

In a bid to create awareness about persons with disability in general and persons with albinism, OHCHR specifically urged the audience to continue being ambassadors of change for Albinism in order to collectively strengthen the platform to eradicate discrimination and violence against persons with albinism.

The celebrations were graced by the Commissioner- Reproductive Health from the Ministry of Health, representatives from the Ministry of Gender, Labour and Social Development, representatives of Kabarole District Local government, Executive Director and staff of Albinism Umbrella, Uganda Albinism Association, parents, guardians of persons with albinism, persons with albinism and the media. 

Tags
Health Albinism Human Rights