On 18 December 2014, the United Nations General Assembly adopted resolution A/RES/69/170 proclaiming June 13 as International Albinism Awareness Day. Five years down the road we have seen some progress, and last week we celebrated that progress under the global theme “Still Standing Strong”.
I thought this was a good choice of theme, as it allows us to recognize, celebrate and encourage the strength of persons with albinism. Despite all the past and ongoing challenges that they face, they are STILL STANDING STRONG!
While I was preparing my remarks for an event on the day, I was reminded of a Jamaican expression, “The rain is falling, but the ground is still hard.”
The expression came to mind because, while I wanted to recognize and celebrate the progress that has been made, I also knew that life was still very hard for most people with albinism.
And I knew that it was important for us to take a firm stand in solidarity with them, not just in Rwanda, but around the world.
We had a wonderful start to the celebration in Rwanda with a March in the streets. When I spoke at the International Albinism Awareness Day event after the march, I encouraged everyone to not only walk in the streets to promote the rights of persons with albinism, but to also go into the restaurants, into the offices, into the schools, everywhere, and speak for those whose voices are still not being heard.
I called on everyone to join our brothers and sisters with albinism in this movement to get society to recognize and respect their rights.
Respect their right to live in peace and without stigma and discrimination; respect their right to equal opportunity; their right to be treated with dignity; their right to proper health and education; and more.
And I asked the audience to continue to march and not rest until things have changed for the better for these members of our society.
I have always treasured Martin Luther King Jr’s “I have a dream” speech.
There is a section of the speech when Dr. King says, “I have a dream that one day little black boys and girls will be holding hands with little white boys and girls.”
International Albinism Awareness Day (IAAD) made me wonder, when will we see the day when little boys and girls with albinism are accepted within our societies as normal human beings?
When will little boys and girls with disability hold hands with other little boys and girls, as people with equal rights and opportunities?
Some of the testimonies I heard at the event from persons with albinism were deeply saddening. Stories of parents abandoning their children with albinism, of kids in school refusing to sit beside them, and more.
And we have seen the occasional news that in some other countries persons with albinism are sometimes killed because of superstitions.
For me personally, and for the office I am privileged to lead, 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”, we must start by empowering people with disabilities, promoting their rights and improving their living conditions.
This has become a central objective of our work at UNDP Rwanda and within the One UN. We want to do for people with disability what has been done for gender; that is, we want to get to a point where no institution, no individual, no policy-maker, no business, no NGO 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 plan not to rest until there is change, on a large scale, everywhere.
Over the past few years, we have been proud of our partnerships with organizations that help to empower persons with disabilities. And proud of the results we have seen.
Since 2013 we have been supporting the Strengthening Civil Society Organizations for Responsive and Accountable Governance in Rwanda Programme which is implemented by the Rwanda Governance Board (RGB). Under this programme we have been actively striving to domesticate the International Convention 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 sign language throughout the society, creating jobs and improving living conditions for deaf and blind people, as well as providing specific support to people with albinism.
One example of our work with the latter group involves a partnership with the Organization for the Integration and Promotion of People with Albinism (OIPPA) and the Rwanda Military Hospital.
Together, we organized a health screening for these persons, with expert medical doctors providing treatment and preventative healthcare.
The focus was on the effects of sun exposure and skin cancer. More than one hundred persons with albinism attended the first screening and received skin cancer screenings as well as medical advice and products.
Persons with albinism are a unique group whose human rights have generally gone unnoticed for centuries. We have seen 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 often results in erroneous beliefs, myths and 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 including discrimination based on colour, discrimination based on disability, special needs in terms of access to education and health care, violence physical abuse and violence, and abandonment of children.
This needs to change, urgently, now.
I do want to express sincere gratitude to all organisations and partners who are helping to address these issues in Rwanda and across the world.
And, as I stated in my remarks on IAAD2019, I would like to commend the Government of Rwanda for its progressive stance on the issue and the efforts being made to promote an inclusive society.
Rwanda is one of the global pioneers in this regard (It is particularly pleasing to also see that the Ministry of Justice and the Rwanda Law Reform Commission are currently working on assessing areas of gap in national laws and policies, and are updating national laws to be consistent with the UN Convention on the Rights of Persons with Disability).
I also 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 including albinism around the world.
And we must be brave enough to stand up for their rights. UNDP and the UN family remain strongly committed to this cause. I, personally, remain strongly committed to this cause.
And we invite everyone to stand up for the rights of persons with albinism and persons with disability more generally. We should stand up today, tomorrow, and every day thereafter.
(Based on a speech I made on International Albinism Awareness Day 2019 in Kigali.)
Stephen Rodrigues is the UNDP Rwanda Country Director.