The evolution of youth leadership and ever-present challenges
Welcome to our blog series exploring distributed leadership.
Through the series, we will ask and address some of the key questions around this topic, including: how can we share power and decision-making? How can we support leadership among individuals and organisations? The themes and lessons from this blog series will inform the on-going evolution of the Frontline AIDS partnership and how we co-design new programmes.
Y+ has come a long way since the early days when it was an online peer support group for young people living with HIV. Fifteen years later, with the support of organisations such as Frontline AIDS and GNP+, it has become an independent global network and an equal partner in regional programmes.
In the first of a series of blog posts about distributed leadership, Cédric Nininahazwe charts his organisation’s evolution. Whilst proud of the huge achievements of Y+, he’s also conscious of the challenges that face young people in its network.
From peer support to global network
In 2005, Y+ started as a virtual peer support group where young people living with HIV could meet online. The original members discussed the issues affecting them and felt part of a wider community of young people affected by HIV and AIDS. In 2008 the group began to have face-to-face to meetings. These were really important spaces: we learnt from each other, found out about advocacy efforts in different countries and got support from our peers.
In 2014, we evolved into a global advocacy network. With national and regional structures in place, members were better able to represent their constituencies. Members identified issues facing young people in their regions and agreed common global priorities.
As global representatives of young people living with HIV, we started being invited to meetings convened by major players including UN agencies. This was a great step forward. But it soon became apparent that the voice of youth representatives wasn’t being taken seriously. It sometimes felt that we were being invited to meetings just so that the conveners could tick a box.
In 2015, with the help of Frontline AIDS and the Global Network of People Living with HIV (GNP+), we advanced again. We were now a fully self-governing network, with our own board deciding on our priorities. A fellowship programme supported by Frontline AIDS and GNP+ strengthened the capacity of our youth leaders. We now initiate programmes and highlight advocacy issues on our own. We were no longer a tick in a box!
An equal partner in READY+
In 2016 we were invited to join READY+, a new programme that was being established in four countries in southern Africa. READY+ empowers adolescents and young people to design and implement health programmes. With our leadership capacity strengthened, we insisted on joining the consortium as equal members. In the past, we were ‘consulted’ with no budget or activities of our own. This was disempowering and far from equal.
As a member, one of the first things we did was to get the other consortium members and partners to assess their commitment to youth engagement. We compared partners’ own assessments of their performance with that of the national youth networks. The comparison was used to improve the level of youth engagement among all READY+ partners. Overall, we found the experience rewarding. It allowed honest and direct discussion between the partners and youth networks on what meaningful engagement looks like.
This is the first time Y+ has been a full consortium member, with our own commitments and deliverables. We claimed this space. We now have to prove ourselves. We’re up to the challenge, but I’m always conscious of the difficulties our youth leaders face.
While meeting the expectations of our consortium, we need to recognise the challenges confronting our young leaders as they deliver programmes. They face a balancing act between being the voice of their peers and satisfying partners’ expectations. Often these young leaders have inadequate support and resources and cope with a lack of trust from community leaders, governments and more established partners.
Having been in their position, I now find myself playing the intermediary. For example, recently we contributed to the mid-term review for READY+. We needed to recruit a junior consultant from amongst the young people involved in our network. I sent out a job description highlighting minimum criteria, detailing the multiple skills needed. One of my colleagues wrote to me with a reminder of how challenging those criteria might be:
“Most young people living with HIV have missed out on further education,” explained, Phindile Nhleko, Director of the Eswatini Network of Young People Living with HIV (SNYP +). “Living below the poverty line and taking care of siblings, without parents to look after them, means they do not have opportunities to study. We need to support young people to develop skills. Employing them in small local projects can help them fend for their families. That’s how I got to be in this role today. The money I earned helped me fund myself through college. I am where I am because someone believed in and mentored me”.
Being the public face of HIV
Another challenge confronting young leaders living with HIV is being the public face of our members. This means sacrificing our privacy and carrying the burden of stigma. From my own experience, I know what it’s like to respond to journalists, the wider community, family and friends, on all kinds of HIV related topics. The questioners don’t conceal their disapproval. Were you born with HIV? Is your girlfriend positive? Do you use a condom? Are you really positive? Working in this hostile environment adds yet another layer of pressure to the young people we ask to lead.
Coping with loss
For us, distributed leadership means that our young leaders come from the grassroots and are personally connected with those they represent. This involves coping with personal loss. The statistics of HIV-related deaths always have a name and a face. I think of friends and peers. For example, my friend Juste, co-founder of Burundi national network of young people living with HIV, died tragically in 2006. As a healthy teenage orphan, he kept being evicted from the homes of his extended family. They couldn’t cope with the stigma of looking after someone living with HIV. Juste became very sick, but the doctors didn’t know what was wrong with him. They thought it might be malaria or tuberculosis. It turned out to be depression, and he died a month later. Rejected by those who were meant to care for him he lost the will to live.
Jessica, who was part of a youth network in Burundi in 2011, gradually became increasingly ill over several weeks. When she died, eight boxes of unopened antiretroviral treatment were found under her bed.
The experiences of leaders of young people living with HIV may vary, but they are all weighed down by the responsibilities they carry. It’s important, whenever we engage with them, that we never forget their back story, the hard conditions they came through and the struggles they face today.
Young people’s leadership is driven by a passion and thirst for change. Our expectations of our leaders needs to be matched by an appropriate level of support and understanding.