“You have to do something”
Dear Debriefers,
For the past two decades of working on disability rights, I prioritised the need to “do something” and had very few moments to stop and reflect. But after stepping back from my roles in leadership, I am confronted by a torrent of thoughts on the politics of disability advocacy.
It is necessary for the disability rights movement to look back given our collective triumphs and challenges since the Convention on the Rights of Persons with Disabilities (CRPD) came into effect in 2006. I watch with interest our increased introspection, for example published here on the Debrief or being explored by Mad Thinking.
In this piece I look at how groups and issues get prioritised or ignored, and the related question of leadership. Too often we see a style of leadership I call “King-of-the-Hill”, excessively individualistic and sometimes despotic over an advocacy field they see as their kingdom.
I share how I tried to avoid becoming a “Queen-of-the-Hill” and what I think organisations can do to nurture a more inclusive style. And for me, these reflections begin with revisiting our underlying question of motivation.
About this edition
Ikponwosa “I.K.” Ero was the first UN Expert on the rights of persons with albinism. She went on to co-found the Global Albinism Alliance and the Africa Albinism Network where she served as Executive Director until last year. IK writes from Canada.
Athenkosi Kwinana is a visual artist and activist with albinism, from South Africa.
Original work like this is made possible by support from readers.
“You have to do something”
In 2004, I visited my home country, Nigeria, from Canada where our family had immigrated years prior. The bus from the airport stopped in one of those notorious Lagos traffic jams, long enough for a street hawker to notice me in the bus. He called out to someone else to “come and see your sister.”
A young lady with albinism appeared. She was badly burnt, with cracks and calluses corrugating her otherwise youthful face and hands. “Oya, mek una dey spik French!” the initial hawker interjected in Pidgin, insinuating that (because we both have albinism) we were foreigners and probably had our own language.
I smiled at her warmly, unable to open the window. She placed her hand on the window, and I followed her lead in an awkward but mutually accepted act of solidarity. “Heeeiii” I heard her subdued sound of regret when our bus picked up speed and left her behind.
The whole situation made me very sad. I felt that even in our mutual experiences, I had so many privileges. I thought she was probably on her way to getting skin cancer if there was no intervention. I knew that I was not alone in my thoughts when my biological sister sitting next to me, also silent from the entire experience, said to me quietly “I.K, you have to do something.”
Centering my motivations
After that interaction, my motivation to advocate on behalf of people with albinism took root in my being. Some years later I found myself an activist trying to raise the situation of people with albinism in the corridors of the United Nations.
An advisor instructed me to never conduct advocacy without spending a few moments thinking about my motivations and to ensure that it was centered on concrete people.
I centered my motivations on those who would never have the opportunity to speak at the human rights council, whether my sister on the street of Lagos or victims of attacks faced by people with albinism.
After such reflection, my shyness was greatly diminished. Armed with a laptop and mini-printer I set up a makeshift office on the floor behind a pillar adjacent to the Council Chamber.
From behind the pillar I ambushed ambassadors and their delegates. In-between, I took power naps using my purse as a pillow and a jacket as a blanket. A small purse of toiletries served as a refresher kit. Every inch forward – a meeting, a connection, a UN resolution – was a victory.
The question of what to prioritise
A decade after the encounter with my “sister”, I found myself in a position of influence, serving as the first United Nations Expert on the rights of persons with albinism.
The question of what to prioritise in my work soon surfaced. Ultimately I chose to focus on trying to bring an end to the cases of ritualistic attacks and violence against people with albinism. It wasn’t because they were more important than other issues – or that fatalities from other causes, like skin cancer, were less important.
But I saw fairness and strategic reasons to prioritise the attacks. They were a key part of what led to the creation of the mandate at the UN. There was a need to build a resilient and sustainable albinism movement, and focussing on the attacks could command a level of attention that would bring visibility to this work. I knew that the attention wouldn’t last forever, given the ebb and flow of today’s media.
But not everyone was happy with this choice.
Before you pay attention to us
I received several correspondences from people distressed with my focus on attacks. Messages from inside and outside Africa came along the lines of “do we need to be attacked before you pay attention to us?”.
My initial (often internal) reactions to such messages was exasperation. Part of me felt resentment about not being recognised for the work I was doing. It led to my first major conundrum in advocacy. How could I, with limited time and limited resources, meaningfully engage others in key decision making and prioritisation?
Even as I saw the need to optimise equity, I saw that the attention we received for campaigning to stop attacks could help us bring up other matters too. Let’s first get our foot in the door, then the rest of the body can follow.
Fighting for space in the disability movement
I also found myself on the other side of prioritisation, asking that the disability movement give attention to the situation of persons with albinism. There is an overarching issue of how the disability movement manages diversity, and I think we need to increasingly see it as a movement of movements, not a single monolith.
A question that brings this challenge to the fore is how issues and themes get chosen at international disability convenings. Is it enough to choose broad issues that affect most people, or does that marginalize specific communities or issues?
At two separate international events I proposed a side event on albinism and was rejected because the hosts didn't want to “highlight a particular constituency.” However, at the same events, there were side events that did discuss specific disability groups, raising the question about the true reason for the rejection.
The CRPD was achieved by the disability movement coming together and emphasising our similarities. We need a nuanced idea of unity though, and to reflect more on how to do joint advocacy as a movement of movements. It’s important to balance the shared goals of the CRPD as well as the diversity of different constituencies in our movement.
Conducting an orchestra or playing solo
Leadership in the disability space is a singular opportunity to manage diversity and to ultimately transform the movement from the post-CRPD era into the next. I would like to see disability leaders, who, like the conductor of an orchestra, know how to produce harmony from a diversity of musical instruments.
In this model, the leader is a uniting force, understands the individual skills of the musicians in the orchestra, knows how to draw the right sounds for the right moment, while valuing all musicians and maintaining a cohesive unity. The conductor knows how to get out of the way and let the musicians play.
But unfortunately, I don't always see leaders like that. Too often we encounter a leader playing solo and calling it a band.
King-of-the-Hill leadership
I call the solo leadership a “King of the Hill” style. I’ve run into people leading in this way from my social justice work and all through my advocacy career. They are leaders that turn an advocacy world into their own kingdom to rule over as despots. And I say King because they’re often, although not always, men.
I believe the King-of-the-Hill leadership style is fuelled by a mindset of scarcity. A leadership type which hangs on to what it can get because there appears to be so little to go around. Protecting personal interests and the need to retain power can lead to cliques, cronyism, and unethical power structures. The situation tends to give rise to other ethical issues in the areas of transparency, fairness and so on.
Another factor is time: there are those who have stayed in the movement leadership so long that they become almost indispensable. While the institutional memory in this leader is valuable, the same leader risks becoming (in)advertently a gatekeeper of ideas, resources and opportunities in their sphere of influence.
Some of this leadership type seems to have been part of what went wrong last year at the International Disability Alliance (IDA). One of the key findings of an independent audit on the organisation was governance failure, caused by, among other things, the fact that decision making was “concentrated on a few individuals”. But this issue is not unique to the IDA. Indeed, any of us could fall into this trap.
Ascension to a place of power
In 2021, as I finished my mandate at the UN, I very quickly started to become a go-to person on several issues around albinism. Soon after, when I saw anything related to international advocacy on albinism, my internal expectation was that I would be involved.
Governments and civil society organisations consulted me on decisions related to people with albinism, on important policy decisions, or, say, on the choice of recipients of prizes or resources. I recognised my ascension to a place of power. It was an attractive and potentially useful position to be in.
But I remembered what I knew about the King-of-the-Hill type of leaders that I had encountered in the past, and I decided to do something to prevent myself from walking on to that throne. A leadership mentor helped put me back on the right path, asking me questions about what was best for me versus what was best for my constituency and the disability movement.
Setting a deadline
With guidance I could see myself in another role, without becoming a Queen-of-the-Hill. One of the ways to do this was setting a deadline for my exit from the frontlines of advocacy. Based on ongoing projects and the vision I had, it was going to be seven years and no more.
The deadline decision helped me to be a better leader because it created a healthy sense of urgency. It helped me achieve more goals than if there was no end in sight to the leadership. (I ultimately stepped back sooner due to the illness of a family member.)
In addition, it turned my attention to transition planning and diffusing power. I began to invest more time in the growth of my entry-level and intermediate-level colleagues. I gave them opportunities to speak at major halls of power, or other places typically reserved for the executive director, such as engagements with potential funding partners or government meetings. And, on a personal basis, I started looking for job opportunities beyond the movement.
Learning the hard way
These reflections on leadership are not meant to blame anyone. In fact, I often wonder if it is really fair to expect the disability movement to churn out ready-made leaders from a movement that has been oppressed for so long. Systemic and historic oppression, according to philosopher Frantz Fanon, deeply affects one’s mentality vis-a-vis oneself and how one treats others.
And I often wonder whether people staying too long in positions of power is perhaps also an indication about how our society at large is not yet inclusive enough. Leaders in the disability movement don’t necessarily have options outside of the movement so that they can confidently divest power and plan their exit.
As for myself, I have not been a perfect leader. My intent in sharing my personal experiences in leadership is not to take a moralistic stance. I have made mistakes – big and small – which I continue to learn from. One of them is how I didn’t communicate well with my constituency on why I prioritised attacks in advocacy, leaving some offended and others un-consulted.
Investing in our people
The entire experience convinced me that we need to improve support structures that we provide to leaders in our movement. We should invest better in our people in the disability movement.
Our movement is prone to the King of the Hill leadership type precisely because we have not sufficiently made that investment in our people. Without adequate mentorship support (from inside and outside the disability movement) those who have experienced oppression risk replicating it.
In turn, these leaders need to pay it forward, by sharing leadership skills development and giving others opportunities to put leadership in practice. This will not only ensure a healthy movement, it would also build a crop of leaders that are also ready to go into other areas, promoting inclusion in the wider world.
Making our organisations talent academies
One of my inspirations for this line of thinking comes from Indra Nooyi, former CEO of PepsiCo. Her approach hinged on the notion that people are the greatest assets of an organisation, and their growth was essential to the health of the entire enterprise. She described PepsiCo as a “Talent Academy which sold drinks and snacks.”
When I tried to follow Nooyi’s advice at my last position as Executive Director of the Africa Albinism Network, the result was much better than most traditional leadership strategies that I had implemented or experienced in the past.
It is true that mentorship takes time and money which is often scarce given our perennially limited human and financial resources. However, it costs little to increase the responsibilities of colleagues to match their desired areas of growth or to encourage their goals and dreams with concrete opportunities.
Employment shouldn’t just include basic standards of health and vacation benefits but also a rich package of professional development. Individualised growth plans can be immersed into organisational plans and periodically reviewed.
I hope that we get to a place where our organisations in the movement are leadership academies which do advocacy and provide supports on the side. For now, we seem to be far from this approach. While increased resources will help to achieve this, I believe that the fundamental issue is a change of perspective and strategy.
Culmination of collective advocacy
In September 2024 as my self-imposed deadline for exiting the frontlines of advocacy approached, I joined several Africans with and without albinism at the African Court of Human Peoples’ Rights, based in Arusha, Tanzania. The Court was hearing a landmark case on the rights of persons with albinism, challenging the government in Tanzania for not doing enough to protect people with albinism from attacks.
I watched a survivor of attack take the stand, speaking with such eloquence and confidence. I observed the strength and leadership of the lawyers who brought the case. In the courtroom I saw the passion and emotions, the respectful collegiality and the extensive public interest.
This case was a culmination of years of successful collective advocacy and years of leadership development poured into the applicants and intervenors (a majority of whom are the products of rigorous training at the University of Pretoria’s Centre for Human Rights).
After making my intervention with two other colleagues, detailing to the Court various other rights that had been violated beyond the attacks, and as the president announced the conclusion of the hearing, I struggled to hold back tears.
Leaving the frontlines
I exited the courtroom in Arusha that cool September afternoon. It was an emotional time as I said goodbye to several people in Tanzania. Since I was exiting advocacy, I wasn’t sure when I would see them again.
Sitting in an air-conditioned car returning to my lodging, I looked out the window, recalling my sister who was hawking on the streets of Lagos nearly two decades ago. I wish I could catch up with her now.
I would share the good news with her about everything that had since been accomplished. This time, I would have alighted from my vehicle to speak with her and to try to understand her. Perhaps we would stay in touch in a shared hope for our future and for those with albinism coming after us.
Once back at my hotel, I slowly packed up, noticing for the first time that I was exhausted. I was suddenly feeling the weight of some of the many battle scars I had amassed (and in some cases inflicted) over nearly two decades of frontline advocacy.
However, I was also overwhelmed with contentment, and peace. I had this unshakable feeling of confidence that I could now safely pass on my weapons of advocacy. The recipients were ready. I know that they are perfectly capable of keeping up the fight, until there is no longer a need to wage this war.
In solidarity,
IK
Postscript: milestones in advocacy
In February 2025, the Court issued a landmark ruling in favour of persons with albinism. They ordered measures for access to education and health including measures to prevent skin cancer as well as compensation for victims of attacks. While directed at the government of Tanzania, the case is precedent-setting with strong influence on all other countries within and outside the region.
And more recently, in September 2025, the World Health Organisation added sunscreen to its list of essential medicines. This could prevent skin cancer deaths among people with albinism because national governments now have to purchase sunscreen and make it available and accessible as a matter of course. This achievement too was the result of collective advocacy inclusive of the Africa Albinism Network, the Global Albinism Alliance and led by the current UN Expert on albinism.
Outro
Further reading. See IK's previous piece on the Debrief, This is war, on fighting back against the violence faced by people with albinism.
Follow IK Ero on Linkedin. See also the website of Africa Albinism Network.
For more on Athenkosi's art, see her Linktree or follow on Instagram.
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Acknowledgements
Thanks to Athenkosi Kwinana for the fantastic illustration. Thanks to readers and organisations supporting the Debrief and to Peter for the opportunity to share my thoughts and for editing support.
Thanks also to my colleagues at Under the Same Sun, Peter Ash in particular, for their amazing support in my advocacy journey and colleagues at the Africa Albinism Network who gave feedback on an earlier draft of this essay.