Remarks for the UNDP Resident Representative International Albinism Awareness Day

June 13, 2019
  • Excellency Ambassador; Executive Secretary of NCPD;
  • Commandant of the Rwanda Military Hospital (TBC);
  • President of the Organization for the Integration and Promotion of People with Albinism (OIPPA);
  • Representative of the National Union of Disability Organizations in Rwanda (NUDOR);
  • Distinguished representatives of Government institutions; and representatives of Development Partners
  • Distinguished members and partners of OIPPA,

Good morning and welcome.

I am very pleased to be here with you this morning on this very special day. Today we celebrate International Albinism Awareness Day and I wish to start by extending my gratitude to the President of OIPPA for inviting UNDP to be a part of this celebration and also for the wonderful partnership that we have had with OIPPA. I also want to sincerely thank all the invited guests here present for joining us in this celebration.  

On 18 December 2014, the United Nations General Assembly adopted the resolution proclaiming June 13 as International Albinism Awareness Day. Today, five years down the road, we have seen progress. And today we celebrate under the theme “Still Standing Strong”.

This theme has been chosen to recognize, celebrate and encourage strength in persons with albinism. Despite all the past and ongoing challenges they face, they are STILL STANDING STRONG!

Ladies and gentlemen, in my country we have a creole saying, the English translation goes “The rain is falling, but the ground is still hard.”

And I was reminded of this last night as I reviewed these remarks, because  while we recognize and celebrate the progress that has been made, we also know that life is still very hard for most people with Albinism.

Today is therefore a moment for us to stand in solidarity with persons with albinism in Rwanda, and around the world, and to support their cause.

Today is a day, when we should walk the streets, go into the restaurants, into the offices, into the schools, everywhere, and speak for those whose voices are still not being heard. Today, we should join our brothers and sisters with Albinism, and call on the rest of society to recognize and respect their rights. Respect their right to live in peace, their right to be treated with dignity, their right to equality of opportunity, their right to be educated, to have proper health care, and more.  Today is that day. And tomorrow is that day. And the day after is also that day, because we should not rest until things have changed.

As a black person I have always loved that Martin Luther King “I have a dream” speech. There is a part of it when he says, “I have a dream that one day little black boys and girls will be holding hands with little white boys and girls.”

And today, it makes me wonder, when will we see that day, when little boys and girls with Albinism will be accepted within the society, as normal. When will little boys and girls with disability hold hands with other little boys and girls, as people with equal rights and opportunities.

For the UN and UNDP, the inclusion of people with disability is central to the promise of the 2030 Agenda on Sustainable Development. If we are to “Leave No-one Behind”, let us start by empowering people with disabilities, promoting their rights and improving their living conditions.

Ladies and gentlemen, I want to inform you that this is a central objective of our work here in UNDP. We want to do for people with disability what has been done for gender; we want to get to a point where no institution, no policy-maker, no business can overlook the rights and needs of people with disability. We want to see buildings modified to accommodate the needs of people with disability, we want to see government offices and private companies modify their products and services to better meet the needs of people with disability. And we will not rest until there is change, on a large scale. Here and everywhere.

Over the past few years, we have been proud of our partnerships with organizations that empower persons with disabilities. And proud of some of the results we have seen.

For example, our work with OIPPA, which started in September 2018 under our Strengthening Civil Society Organizations for Responsive and Accountable Governance in Rwanda Programme, which is implemented in close collaboration with the Rwanda Governance Board. Under this programme we have been working to domesticate the International Covenant on the Rights of People with Disabilities by supporting concrete initiatives implemented by CSOs. Focus areas include the right to education for children with disabilities, promotion of Rwandan sign language, and improving living conditions for deaf and blind people, as well as people with albinism; this last one through the partnership with OIPPA. And I wish to congratulate OIPPA and the other partners for the outstanding work they have done to improve the lives of persons with disabilities.

Ladies and gentlemen,

Persons with albinism are a unique group whose human rights issues have generally gone unnoticed for centuries, resulting in deeply engraved stigma, discrimination and violence against them across various countries. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion. The complexity and uniqueness of the condition means that their experiences simultaneously touch on several human rights issues including discrimination based on color, discrimination based on disability, special needs in terms of access to education and enjoyment of proper health care, harmful traditional practices, and abandonment of children.

We must admit that the situation for persons with Albinism is generally better in Rwanda than in many other countries in sub-Saharan Africa. However, challenges remain. In the concluding observations of Rwanda’s recent review of the implementation of the United Nations Convention on the Rights of People with Disabilities (UN CRPD) in Geneva earlier this year, reference was made to the need for Rwanda to conduct awareness-raising efforts, including a public information campaign on the rights of persons with albinism, to address issues of discrimination and stigma. It was also emphasized that Rwanda should adopt specific measures on persons with albinism in policies governing health and disabilities, specifically to ensure the availability, accessibility, affordability and quality of prevention and treatment for skin cancer.

It is against this background that UNDP and OIPPA have organized awareness-raising sessions and human rights education for people with albinism and parents of children with albinism. Most recently, in partnership with the Rwanda Military Hospital, we organized a health screening activity providing treatment and preventative healthcare focusing on the effect of sun exposure and skin cancer. 100 persons with Albinism were provided with skin cancer screenings and further follow up will be done.

Ladies and gentlemen.

As I conclude, let me thank all organisations and partners who are helping to address these issues. I want to acknowledge, as I stated earlier, that progress is being made. But I also want there to be no doubt that we still have some way to go in changing mindsets, laws, policies, and programmes to ensure equal rights, opportunity and dignity for persons with disabilities around the world. And we must be brave enough to stand up for each other’s rights. I wish to conclude by reiterating UNDP’s strong commitment to this cause. I stand up for the rights of persons with albinism today, and I invite all of you to join me. 

Thank you very much.