The Blog

Youth participation in the HIV response: Are we setting the table or just on the menu?

In the mix of a meeting or conference, there are a few simple questions we should all be asking to determine if there is participation, and how meaningful it is.

Youth participation and the involvement of adolescents and young people are growing buzzwords in the international HIV response. As focus on the disproportionate impact of HIV on young people grows, so too do demands to include young people in the response. Participation is vital, but too often it's not meaningful, with young people brought in tokenistically or as 'window dressing'.

As part of the Link Up programme, ATHENA has supported the development of principles of youth participation and meaningful engagement. We also lead the Young Women's Leadership Initiative, through which we have developed a comprehensive programme to support and mentor young women as new leaders in the HIV response.

In the mix of a meeting or conference, however, there are a few simple questions we should all be asking to determine if there is participation, and how meaningful it is.

Many of these speak to my recent experiences at a regional Adolescent Sexual and Reproductive Health (ASRHR) Symposium, held in Zambia in December 2014. This Symposium modelled some really good practice in youth participation, such as supporting the engagement of more than 270 youth delegates in a youth pre-conference.

But there were also points where I found myself questioning how embedded and meaningful youth engagement was, or whether it was treated as an added bonus or box-ticking exercise.

Here are the questions we should be asking:

  • Who is participating? It can be challenging to support young people with literacy or language barriers, or without experience in advocacy work, but the vast majority of young people most affected by HIV are not seasoned UN meeting presenters, fluent in English, highly educated and well-travelled. Participants should be representative of the issues being discussed, including young people most affected by HIV in SRHR and HIV forums, as well as representing diverse class, gender, race, sexuality and disability. Not all young people can be represented by any young person - if the only young people in the room are male, or straight, or from the US, you do not have meaningful or adequate youth representation.
  • How are they supported? Support for young people to participate should be a complete package including technical, information and financial support. Specialist support to obtain visas (which can be really challenging for young people to access) is essential. Full financial support should be provided covering all costs involved, provided in advance and acknowledging that many people have no access to a bank account or funds to pay upfront and be reimbursed later.
  • How old are the young people in the room? If the meeting is about adolescents, and all the youth advocates are in their late twenties or early thirties, there's a problem. There is a tendency to champion 'older' youth advocates with significant previous experience, to the cost of opening up spaces and opportunities for new leaders. This is damaging in all fields of advocacy, as experienced advocates become over-burdened, and others can't break through. It's doubly dangerous in youth advocacy though - at some point, those experienced advocates will be too old to fly the youth flag.
  • How are young people involved? Being in the room is not enough. Young people should be involved on organising committees, abstract selection panels, setting agendas, leading discussions, chairing sessions, presenting and at all levels of organisation in every fora, but even more so when the conference is about young people. More, this participation should be on an equal footing - beyond sharing personal stories to an equal place at the table.
  • Is participation on the agenda? If the meeting or event is talking about young people, it should also be talking about the meaningful participation of young people. This creates a vital space for youth participants to critically analyse and feedback on their participation. At the ASRHR Symposium, the original programme included a track on "Rights, responsibilities and participation of adolescents in ASRHR/HIV issues", which was dropped in the final programme, leaving no spaces where participation was focussed on.
  • Do young people think their involvement is meaningful? This could be the only question, as it's really very easy for an individual to discern if they are being valued, heard and respected.

We need to make sure that young people are setting the agenda, leading the debate, presenting as experts and equals, asking challenging questions and holding power to account - especially when we are talking about their issues and concerns. We need to be talking with and listening to young people, not talking about them or to representatives selected for their ease of participation rather than the experiences and expertise they bring to bear. There's an advocacy saying I love: "if you're not at the table, you're on the menu." Meaningful youth participation means youth leaders at the table, setting the menu.