This article is dedicated to everyone who contributed to developing what is now known as the international albinism movement. These include national and community-based albinism groups as well as researchers who produced information sufficient to plant the seed of the international albinism movement, from which hundreds of thousands of people with albinism and their family members benefit today.
First-ever Resolution on albinism at the UN was on June 13
Ten years ago, on June 13, 2013, the United Nation’s Human Rights Council adopted the first resolution on albinism. The Resolution A/HRC/RES/23/13 (“Resolution 23/13) condemned attacks against people with albinism (PWA) across Africa and called upon affected Member States to take several concrete steps to put an end to the situation.
June 13 declared by the UN General Assembly as International Albinism Awareness Day
One year later, in New York, the UN General Assembly adopted June 13 as “International Albinism Awareness Day (IAAD)” to serve as a platform for visibility on the issues faced by people with albinism, particularly the violence and associated discrimination.
This year, 2023, marks nine years since the first IAAD was celebrated in 2015.
The First IAAD was on June 13, 2015
The first IAAD was memorable! In the first place, it seemed almost unbelievable that a condition such as albinism, which to many – particularly in the West – seemed an obscure condition, could attain such a level of visibility. Logos celebrating IAAD, and a website explaining the day were propped up quickly around the world. The day was marked by a diversity of events across several continents: From North America to Asia. It was notably marked at the United Nations and in Tanzania which was the epicenter of reported targeted killings and mutilations of people with albinism at that time. The President of Tanzania himself, Jakaya Kikwete, attended the first IAAD which was held at a well-packed stadium in Sheikh Amri Abeid Memorial Stadium in the Arusha Region.
A Special Post for Albinism at the UN
Within weeks of the first IAAD, the UN Human Rights Council created a special mandate of the Independent Expert (UNIE) on the enjoyment of human rights by persons with albinism and I, IK Ero was appointed into that role. I served in that role from 2015 to 2021.
Everything Happened Relatively Fast for People with Albinism
The time it took for all the above successes was seven years of intense work and advocacy – nonstop – with all the major milestones above occurring in the last two years of that period.
This was extraordinarily fast and highly unusual in the context of international advocacy of a relatively unknown group with no political or financial backing that is typical for successfully broaching issues at this level.
A friend at the UN once asked me “how we did it” because “there is no way that an ordinary movement that was so small could achieve so much in so little time.” I gave a simple answer, saying thank God but also mumbling something about having the right people.
Today, nearly a decade later, I think I know why there was so much success for our movement in so little time. In addition to the cosmic justice that had been so delayed for people with albinism which Providence seemed to be finally supplying especially for those who had been attacked, there were also some key human elements that I believe led to the successful birth of the movement. I will expound briefly on each of these elements below.
- A Shocking Problem
The attacks against people with albinism in Africa are quite shocking. Human beings hunted and hacked to death on the false belief that their body parts – because they have albinism – can bring about wealth and good luck. At that time, the international organization, Under the Same Sun or UTSS (where I served as an Advocacy and Legal Officer), took on the lead role in systematically informing the UN of these atrocities by recording the cases and conducting hundreds of presentations globally.
When we started going to the UN in a routine way (from about 2010), cases against people with albinism, attacked in this manner were on the rise and mostly in Tanzania (today there are 30 countries affected). At that time, we believed there were more cases based on anecdotal reports that were streaming into our inbox. Given the involvement of family members or people known to the victims, these cases were hard to prevent and prosecute. Moreover, the government’s inaction or mediocre action in some cases hindered investigation and justice for victims and their family members.
We found allies in the UN system, the African Union (AU) system, and among the Member States. Worthy of note is the Late Ambassador Yusuf Bari Bari who often sat with us to tell us examples of what we could do and achieve to get a resolution and what that resolution could be about. He never told us to do anything but shared good examples from what he had seen in his years in Geneva. We would subsequently meet with scores of UN and AU staff, as well as staff from both small and established non-governmental organizations with a history of successful advocacy. We would mull over these and after some days of thought, would plan out what we could afford to achieve, always keeping in mind how we could best serve people with albinism with our own efforts as well as laying the foundation for the efforts of others in the future. It is in this context that I cannot continue without acknowledging Alicia Londono, who was a Human Rights officer at the UN at this time and Ambassador Yvette Stevens of Sierra Leone. Many others too numerous to mention were key allies. It is highly unlikely that anything more would have happened to move our movement forward without these, patient, wise, and thinking-outside-the-box (as well as strategically within the box) types of allies.
- Strategy, Strategy, Strategy
Once our goals were set, we worked on strategy. We would ask ourselves whether a goal such as the resolution establishing International Albinism Awareness Day (the goal) required a side event to introduce the topic or a side event to pre-celebrate it? (We went for the latter).
We would determine who was key to lead the Resolution among Member States (as they and not NGOs like us could do so). Getting the most strategic Member States on your side and what allies to talk to if the most strategic Member State was not on your side, was another question.
We would look at the schedule of the Human Rights Council as well as adjacent meetings at the myriads of organizations based in Geneva to capitalize on the presence of various stakeholders whether heads of National Human Rights Institutions, Government officials in executive roles, universities offering researchers, or others.
We would map out a schedule that often lasted between two weeks and 3 months with packed days. In nearly every instance, the goal was achieved, and multiple layers of strategic activities were executed to achieve them. I have lost count of the side events we organized and meetings we had. I just know that after every period in Geneva of which I have equally lost count, I returned with close to 95 contacts in business cards alone. I would then painstakingly send thank you notes to nearly all – individually – and follow-up on about a fifth in a deeper way to pave the way for our next goal.
Another VERY important part of the strategy is to know yourself. At UTSS, we all took personality tests to understand how integrated we could be and above all, how we could leverage our differences for the organizational goals.
During our international advocacy, we quickly determined that the goal-oriented/leadership style was most needed given how obscure the issue of albinism is and the need to be constantly assertive and strategic to achieve anything. However, we relied on other traits, but these were put at the service of the goal-oriented approach. Given the relatively small size of the albinism movement and the constant need to raise awareness, I believe this approach will continue to be highly effective.
- Persuasive Speaking
One should never underestimate the power of persuasive speech. It is this skill that makes a person sell you a tablecloth you never thought you needed. Persuasive speech can be used for more necessary things such as ensuring that the matter of attacks against people with albinism is taken to be an urgency that it is.
It is not enough to know the facts. One must know how to present them in a manner that engages the audience. However, before this, one must know themselves. Even if I am intelligent, am I a good public speaker? The only way to test this is to practice and ask for feedback. If you are improving, go on. If people find you hard to engage even after several tries, that is ok. Just keep trying. One strategy to see immediate improvement is to be brief. As one person once aptly advised me as a child: “Look, there is no such thing as a bad short speech.”
However, during these early years of the albinism movement, while attacks seem unabated, the truth is that we did not have the luxury of testing various speakers over time as our funds were limited. From the beginning, we had already teased out our key public speakers using personality tests and from feedback from one or two public presentations. As a result of this process, in many cases, most presentations were by Peter Ash and/or I.
At every meeting to advocate for people with albinism, the same information was repackaged and presented in a way that would most likely engage the audience. A meeting with a group of statisticians meant the PowerPoint slides had data on every page. A meeting with the communications team of a UN office meant that there were far more engaging photos with minimal text on the slides. Every presentation was always important to be brief yet impactful, leaving the audience with action items within their ambit and which were of little burden to execute. The larger action items were reserved for bilateral meetings – the one-on-one meetings with influential people such as country Ambassadors or high-level directors and the decision makers.
- Resources: Money plus more
Traveling to the UN in Geneva and occasionally to New York meant we were going to places with some of the highest cost of living in the world. Every trip required a relatively large budget of about five to ten thousand USD for one person only. This covered a return ticket, and the cost of being in a hotel. Costs also involved the amounts to pay caterers and interpreters for side events and short flights to neighboring countries in Europe where relevant opportunities emerged.
The trips to Geneva and New York were three times per year on average. This meant that we had to use a budget of about 15 thousand to 30 thousand per year at minimum for myself alone – not counting when we included guests for our panels such as survivors of attacks. It also does not include other unanticipated costs such as the sudden need to translate a crucial report into French to ensure that African francophone diplomats had access to the information in a timely manner.
Such costs were necessary because we did not have a country or Member State who was able to take up our cause and cover all costs as sometimes occurs in some human rights situations. Albinism was often a tough sell financially. We often had far more moral support (e.g., a Member State sponsoring our side event in name-only) than financial support. One of the main reasons for this was that the issue was seen mainly as an African problem at this point. However, many African country missions did not have the funds to pay for a robust diplomatic office at the UN, talk less of financially supporting a cause.
Countries with funding have a taxpaying base to report to, and supporting what seemed like an African issue was therefore out of the question. We also had to contend with the fact that we were advocating for people with albinism, often apart from ongoing disability movements whereas people with albinism are a constituency of the disability movement. This was a thorny situation because apartness was proportional to the urgency of the situation whereas integration in disability could bring about funds. This matter was therefore a question we left to strategy discussions and took one position or the other depending on the goal and the activity in question. Ultimately, our goal was a twin track: to promote specific measures to support people with albinism in the short to medium-term while working to integrate them in the disability movement for long-term and sustainable support. The central pledge of the Sustainable Development Goals is to leave no one behind, starting with the furthest behind first as well as interoperative comments of the Convention on the Rights of People with Disabilities, supporting specific measures for constituents of people with disabilities helped our twin-track approach although defending it was not always easy.
- Tenacity (Hard Work x Quality Work x Perseverance)
In 2010, Peter Ash was invited for the first time to the UN in New York. This was not a simple invitation. He had made the invitation happen by bombarding one UN officer with information after information on the situation of people with albinism in Tanzania. The officer finally granted an appointment – reluctantly – and for no more than thirty minutes. Peter immediately boarded a plane to New York and met the officer in the café of the UN building. The officer sat patiently but appeared too busy and distant. Once Peter finished his presentation with photos of the children who had been attacked including messages from the children, the officer pointed at the time and referred him to Geneva: “I am sorry, its better you talk to the Desk Officer who is actually in Geneva.” Peter was deflated but not stymied. He returned to his office in Vancouver discouraged but with his eyes set on Geneva. His tenacity paid off as the Officer in Geneva was the right ally and her support was crucial in helping UTSS become the first albinism NGO with consultative status at the UN after which Peter set out to look for a co-tenacious person to camp around Geneva for the next step. In 2013, after 5 years of part-time consultancy for UTSS, I joined UTSS full-time to fulfill that role. Buoyed by Peter’s tenacity, I began my solo trips to Geneva to execute our advocacy strategies.
In 2013, I was a shy woman when it came to public advocacy. However, one thought of those who died from attacks or survivors of attacks such as Miriam who lost both arms to an attack, and another thought of another Miriam, a child who lost her life, often seemed to push me into the rotunda room of the Human Rights Council. I used my monocular lens to scan the room to locate a country delegate of interest using their desk label as a guide. Afterward, I stopped in between the desks, presenting those seated with information on the attacks against people with albinism. It was rare to find visibly annoyed people or rude people, so this encouraged me. I spoke to any country delegate I saw, summarizing the entire issue in 5 minutes or less and giving them a couple of minutes to respond. Sometimes, the seated delegate was “an intern” or “admin staff” but I didn’t care. This person would one day have more power, I said to myself. True enough, years later, the Administrative Assistant of the Ambassador of Sierra Leone would become a very important ally.
With a mobile phone, a mobile printer, a laptop, and extension cables, I set up a makeshift office on the floor behind the unused door of an auditorium in the UN Human Rights Council building. A half wall adjacent to the door concealed my presence there. This was my on-location office. There, I typed up quick advocacy handouts, checked and responded to emails to ask for and to set-up meetings with various diplomats and UN officers. I also kept the WebTV on to observe the Human Rights Council to see which country had brought in a Minister of Justice so I could trail them in the café for high-level lobbying. When I got tired, I spread my jacket on the floor and took a power nap. Ten minutes later, a quick dab of makeup and I was attending a strategic side event to meet the right people to achieve our next goal.
If what has been stated so far – traveling, meeting people, etc. – seems like an interesting task, then yes, you are right but only to some extent. The truth is that it was very hard work. I recall working in the daytime and then carrying on at night to match the time zone of many of my colleagues who were in Canada. In other words, the days were long, and the nights were short. However, I did try to rest on the weekend – thanks to invitations to some social events by very kind people I met.
Work remained demanding though, often stretching me out of my comfort zone. I remember once that a head of a human rights institution told me that he had little time to meet after I approached him on his way out of his event. He suggested that I walk with him to his next event which would take about 30 minutes as it was across town on the train. With gratitude, I walked with him, took the train, all the while giving him my high-level summary of the issue. “Sir” I said calmly with measured urgency, “you can help us put an end to these attacks.” I paused to read his initial reaction to decide whether and how to continue. All clear, so I continued. “Your institute can carry out research on the root causes of the attacks and identify the main perpetrators. I have all the data to kick it off and we have one staff member who can support you.” Thirty minutes later, I stopped as he stepped into the room for his next meeting. The next thing I knew, I was being offered a sampler from an hors d’oeuvres tray and I grabbed two in a napkin. They will sustain me for the next hour which was no doubt what I would need to find my way back (having low vision which is common in albinism sometimes slows down your navigation in unfamiliar territory). Back in my makeshift floor office behind the auditorium door, I sent a quick thank you email to him and we would exchange correspondence. This meeting – like many others – would not bear fruit for another six years. But when it did, the result was a multi-year grant for in-depth human rights-based reports to improve protection for people with albinism. That thirty-minute walk across town to where I didn’t know, although not totally advised, was worth it.
Integrity is the short answer to the question of why we were taken seriously at all at the UN or AU. We always worked on the premise of integrity in that: it is important to do what you say you would do when you say you would do it, and to do it to the best of your ability.
It is equally important to communicate in a timely way when you cannot meet your promise or meet it well. This goes without saying, but integrity is valuable currency for building trustworthy relationships and creating reliability in one’s advocacy. It causes others to speak for you hence, integrity can have a good compound effect.
When asked for the smallest data, or things that did not seem to “count” as big, we did it with extraordinary care and effort and in a timely way (with little to no bureaucratic processes). We communicated when we could not meet translation deadlines and supplied reports that we promised over email when we did not have them in person. Even questions from the floor at panels and events were answered later via email if the interlocutor provided their email address.
As Malcolm Gladwell says in his book titled Outliers, (paraphrased): you do not need to be the smartest, you just need to be smart enough. I dare add that once you are smart enough in advocacy, everything else will depend on all the other elements e.g., those in this article and they, in turn, hinge on integrity to multiply positive and sustainable impact.
There are many definitions of humility but some of the ones that seemed to work well in the movement was servant-leadership. This is the type of leadership that serves others far more than it is self-serving.
There are hundreds of occasions for which we have no photos. We just never thought to take them because the matter at hand was too pressing to care about photographing ourselves. We also always practiced humility by always assuming that everyone we spoke to was intelligent and reasonable. In addition, we deliberately remained accessible to everyone, including trying to be available to the increasing number of people with albinism and their leaders who were getting in touch with us to collaborate in advocacy. In many cases, we consciously ensured to leave everyone with a little hope even when we couldn’t help concretely.
Humility does not mean that we did not stand up for ourselves. We did so. It does not mean that we did not make mistakes. We did. However, humility was what we knew was necessary to truly serve people with albinism. It grounded us and helped us do everything we could while expecting nothing in return for ourselves. There is nothing as invigorating in advocacy as selfless, humble work for others, expecting nothing but the basics. This spiritual energy fed our perseverance, integrity, tenacity, and hard work. It also helped us to do what was good and right without intentionally seeking the limelight, and without being easily swayed by distractions.
- A Small Group Walking Alone
“If you want to go fast, go alone; if you want to go far, go together.” – African Proverb
We were about seven people, directly or indirectly engaged from UTSS in UN advocacy. Within the UN and AU, we had a few important friends. At most, there were about five of them. There were scores of others who were supporters on a by-event basis and whose cooperation made each step successful. However, with such a small core group, things ran smoothly. No hierarchies, no bureaucracies, no complex processes – just a small group armed with strategy and a little bit of every other necessary ingredient – using them adaptively and dynamically.
Looking Ahead: The Need to “Go Far”
Now that we have momentum from a small group walking fast to a small international movement, we need to go far. A sustainable future with sound strategy is necessary to ensure that children with albinism born generations from now will also enjoy their human rights. This requires a long view with a “slower” movement that brings far more people along. That said, the others to be brought along must be the right people – those who have most of the elements listed above so that they are assets to the movement.
The future of a sustainable movement for albinism also needs proper integration into the disability movement, and other key sectors, particularly health and education. It requires more partners and allies to resource the movement and support its growing core. In this manner, the movement will be set to go far – riding on the gains spurred by the original core of the international albinism movement and resolution 23/13 on June 13, 2013.