Statement of the UN Resident Coordinator, Ms Nathalie Ndongo-Seh, on International Albinism Awareness Day 2020

AS PREPARED FOR DELIVERY

Programme Director – PS in the Deputy Prime Minister’s Office

Deputy Prime Minister, Hon Senator Themba Masuku

Commissioner of Eswatini Human Rights Commission, Mr. Sabelo Masuku

Director of CANGO

President of the Association of Persons with Albinism

Director of Eswatini Bible Society

And of course our favourite and talented artist, Ms. Nichole Dludlu

Good morning Ladies and gentlemen

This Saturday, 13 June 2020, is going to be a big global celebration for people with albinism – possibly the first ever celebration to be held online -- but more importantly one that has a greater chance of becoming the biggest in terms of participation by persons with albinism across the world.

On behalf of the UN family in Eswatini, I am humbled and honoured to have been invited to be part of this important celebration. I take this opportunity to express our appreciation to the Deputy Prime Minister’s Office, through its National Disability Unit under the Department of Social Welfare, for organizing this celebration to create awareness about the challenges faced by persons with albinism and help to demystify the negative stereotypes and attitudes around them.

International Albinism Awareness Day is a time to recognize, celebrate and stand in solidarity with persons with albinism around the world. The theme for this year’s celebration is Made to Shine. Simply put, this celebration is about creating a new perception about persons with albinism. We need to see them in their positive light as survivors and conquerors of difficult circumstances who have emerged as heroes, role models and celebrities. Ms. Dludlu, as we have witnessed today is our shining example. She is among many who are capable and willing to inspire others to break the barriers and shine their light to the world.

I have noted that this Saturday there is going to be an online music concert featuring musicians with albinism that will be streaming live on social media platforms. There is also going to be online dialogues, dubbed the “the Happy Hour” in English, Spanish, French and Portuguese where persons can share stories of how they are shining or just hangout with others across the globe in a new online platform called bluejeans. For more information, I invite you to visit the UN website --- un.org  or the website dedicated to albinism day – albinismday.com. This means that anyone, anywhere in the world can join this online celebration. This is of course unprecedented.

This year’s celebration takes place in the midst of the COVID-19 health pandemic whereby vulnerable persons, such as those living with albinism, are at disproportionate risk to the effects of the coronavirus. While we know that the coronavirus does not discriminate; its impact do. For example, women and children, people with disabilities, are the most vulnerable and are more likely to suffer devastating losses from this pandemic.

The pandemic is intensifying the inequalities experienced by people with disabilities. Persons with disabilities are less likely to access education, healthcare and income opportunities or participate in the community.

People with albinism suffer the devastating consequences of stigma, discrimination and social exclusion, putting children and women in particular, at extreme risk of abuse, violence and isolation. Unfortunately, albinism is widely misunderstood, both socially and medically; with erroneous beliefs and superstitions leading to such discrimination and marginalization.

During the COVID-19 pandemic, people with albinism are extremely vulnerable to the devastating effects of the outbreak. This is worrisome and in need of our attention. Each of us have the responsibility to protect and support our friends, family and neighbours at greatest risk of COVID-19, including those living with albinism. It is crucial that we educate the people of our nation about the condition and stand together, as one people, throughout and beyond the COVID-19 pandemic.

Together, we need guarantee the equal rights of people with disabilities, including persons with albinism,  to ensure access healthcare and lifesaving procedures during the pandemic. We must consult and engage with people with disabilities and put them at the center of response and recovery efforts.

Sub-Saharan Africa bears witness to the most severe cases of violence against persons living with albinism; hundreds of attacks and killings have been reported in 28 countries across the region in the past decade. Worldwide, children with the genetic condition are often exposed to persistent name-calling, teasing and bullying.

 In Eswatini, the social stigma associated with albinism has put the lives of many of those living with the condition at risk for the sake of ritual purposes or being accused of practicing witchcraft. The number of those living with the condition in Eswatini is largely unknown.

In solidarity with all people  with albinism, the United Nations Human Rights Council adopted a resolution in 2013 calling for the prevention of attacks and discrimination against persons with albinism. So too was the first Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, Ms Ikponwosa Ero, appointed to the Council in 2015.

Our brothers and sisters with albinism are amongst those being left furthest behind, as countries seek to achieve Agenda 2030 and the Sustainable Development Goals.

The majority of persons living with the condition die from skin cancer at a young age, between 30 and 40; a disease which is highly preventable. People with albinism have a right to health, including access to regular health checks, sunscreen, sunglasses and sun-protective clothing. Most persons with albinism do not enjoy their right to health.

Today, we stand in solidarity and support of our courageous brothers and sisterswith albinism.

Let us help persons with albinism shine.

I thank you.