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Where's the hope? Dialogues for solidarity, Session 3
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 1
Where’s the hope?
Dialogues for Solidarity
23 June 2017
Session 3 - Life experiences
African and Afro-Caribbean communities: Engaging new leaders
with guests Marc Thompson and Laura Kwardem
Where’s the Hope?, a year-long series of dialogues for solidarity, is coordinated by ReShape,
an independent London-based think tank formed to respond to the ongoing crisis in sexual
Working together, activists and organisers share their experiences and explore new opportu-
nities to address chronic obstacles to successful organising in HIV, HCV and related sexual
and mental health concerns. Emerging advocates and organisers are especially welcome.
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 2
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 3
Background to the series
Huge gains have been made in HIV and HCV, related sexual and mental health con-
cerns. We have the science and practice to prevent and treat HIV and HCV; we know more
than ever about related sexual and mental health concerns. We are reframing our problems to
aim toward sexual health and social well-being.
Yet individuals, organisations, the media and systems continue to stigmatise people
living with these diseases and conditions and they often stigmatise themselves. One could al-
so argue that these conditions are less stigmatised within the healthcare system today than
they once were - at least HIV - but MORE stigmatised outside of the healthcare system.
Where’s the Hope?, the result of extensive dialogue with UK and international activ-
ists, is a ReShape series of inter-related community dialogues, in partnership with leading UK
HIV/HCV/sexual health and well-being sector organisers, organisations and out-of-country
experts. The series will explore the key challenges and gaps of the day, and seeks to promote
solidarity, community engagement, organiser mentoring / co-mentoring and effective initia-
Where’s the hope? intends to be inclusive of people living with HIV (PLHIV), people
living with HCV, BAME (Black, Asian, Minority, Ethnic), trans people, elders and young people,
as well as social researchers. The ReShape series is designed to assist organisers, activists,
advocates and service users impacted by HIV, HCV and related sexual and mental health con-
cerns, with a special focus on emerging advocates and organisers.
All dialogues will be documented, disseminated and posted to contribute to local and
international dialogue. The series will run monthly for a year, on the last Thursday of every
European ChemSex Forum, 2015
We can’t keep compiling our lives as
a series of problems one after the oth-
er, HIV, Chemsex, hepatitis C, de-
pression... We need to create institu-
tions where people can get support
for themselves in a holistic way
around sexual health and well-being,
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 4
Life experiences: African and Afro-Caribbean communities
Engaging new leaders
The third session in the series took place on Thursday 29th June 2017, with Marc Thompson
and Laura Kwardem.
The session explored strategies, tailored to the needs of the varied African and Afro-
Caribbean communities, to encourage participation in community action and engagement in
the design and delivery of services, including support and development of existing and new
The participants discussed challenges and priorities, formal and informal organising, devel-
opment of youth leaders and PrEP as a doorway to community engagement.
The participants were primarily African and Afro-Caribbean people working for service pro-
viders in the UK.
Guest Presenters: Marc Thompson and Laura Kwardem
Marc Thompson, National Coordinator of Project 100
Marc has worked in HIV and sexual health for 25 years. During that time Marc has been the
manager of a number of local community-based organisations, worked in senior management
in both the NHS and Local Authorities. He was deputy head of health promotion at the Ter-
rence Higgins Trust for a number of years, developing interventions to improve sexual health,
raise HIV awareness and reduce stigma.
His interest in the intersection of ethnicity, sexuality and HIV and the impact it has on indi-
viduals and society drives Marc’s commitment to social justice and informs his work.
He is currently one of the national coordinators of Project 100, the national peer support pro-
gramme for people living with HIV, run by Positively UK.
Marc is also a co-founder of Prepster.info, which aims to educate and agitate for PrEP,
and a co-founder and co-editor of BlackoutUK, a community-based CIC and website that pro-
vides a space, online and in the 'real world' for black gay men to share their narratives and
develop a healthy community.
Laura Kwardem is a member of the UK Community Advisory Board (UK–CAB) and a graduate
of the Sophia Forum’s Women Inspire, Support and Empower – Unleashing Positive Potential
(WISE-UP+) workshop. She is passionate about the value of peer support and the meaningful
involvement of People living with HIV in research, with a special interest in women and girls.
She is an active public speaker and community advocate.
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 5
She is currently involved with Supporting Women Information Network (SWIFT), UK-CAB led
community research and the evaluation of Salamander Trust 4M project.
Laura defines herself an activist who is passionate about community mobilisation, gender
equality, women empowerment and the active participation of individuals living with HIV in
finding solutions to the issues that affect them.
Marc opened the meeting by reading the names of black leaders who had all been sig-
nificant in the HIV sector in the 80s and 90s and who had come to the fore in time of crisis:
Tokes Osbu, Mark Blake, Dennis Carney, Robert Maragh, Vernal Scott, Anne Lewis, Gary Tay-
lor, Allan Walrond. Marc noted that these names demonstrated the presence and long history
of black leadership in the HIV and sexual health sector.
Marc went on to explain his own journey, from being a service user as a young man
with HIV to working in an organisation as head of a department and eventually leading his
own organisation. He noted that when he started out many years ago, his journey was typical
of many people living with HIV. He was very fortunate to have met people who trusted him to
do something different. He surrounded himself with an amazing team of people, who he knew
could guide him and mentor him. Marc also made the conscious decision not to work solely
in the voluntary sector, constantly building up knowledge and experience and learning to
work on both sides of the fence. Working outside of HIV also allowed him to build bigger net-
works, to understand diversity within the community, to learn about different funding
streams and to develop different ways of working.
Mentoring became extremely important, pushing him, challenging him and teaching
him to think differently about how to work.
Thinking about the future, Marc noted that when he attended community-based meet-
ings about PrEP, talking about the Black Caribbean and Black African communities, he was
often the only black man in the room. This is not unique to HIV. Whether dealing with care
providers or the decision and policy makers, they are not usually people who look like him
and this is something that needed to be addressed. Working in the sector could be lonely and
with so few black people working in managerial positions, it also made the jobs of delegating
projects difficult, adding to the workload and feeling of burnout. Marc felt it was important to
start looking outside the HIV sector, as black people with HIV were also marginalised popula-
tions with issues around social justice and inequalities and the conversations needed to be
linked to these other issues.
Laura explained that the notion of leadership took her back to her childhood as her
parents were always involved in community development and it was something she grew up
around, albeit not necessarily consciously. Until about 2014, she never saw herself as a lead-
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 6
er, she just fell in this position from needing service herself. When she attended Positively UK
for support, she quickly realised that having access to this kind of services was very helpful
and empowering and she understood the importance of having such services in the area she
lived in. The interaction with peers brought about growth organically. As key people in the
community realised that she had skills that could be used, they provided her with opportuni-
ties to grow and this was a key point in her development. Having mentors there and a huge
network of support, not just in the HIV sector, helped to grow her confidence and make what
she was doing more sustainable. In learning, she realised she could also help others.
Laura noted that from her experience of working with communities, she picked up the
following challenges with regard to encouraging leadership:
- People are not necessarily familiar with the notion of leadership and its possibili-
ties and do not realise the value for them as individuals. It just seems daunting to
- Gender inequalities, cultural pressure and expectation, immigration status, domes-
tic violence and family responsibilities all contribute to people not feeling safe
enough to contribute or simply not having the time to get involved.
- Stigma is still a huge issue with people not willing to be identifiable in wider com-
munity from being active within the HIV community.
- People are not aware of activities available to them that could help them build their
skills for leadership.
- Financial difficulty , stress and the idea of volunteering (no payment ) feels like it
has no personal value
Key points from the discussion
Laura’s story is a real life example of what can happen when people are encouraged
and mentored from the start and given the support necessary to bring them on their journey.
She first went to Positively UK to use their peer support services. Her positive experience
persuaded her to volunteer to give something back. She was mentored, trained and believed
in and ended up giving public presentations at clinical conferences and public events and sit-
ting in Positively UK steering group as well as running a support group in her local area.
However, just waiting for encouragement in an environment where institutionalised
racism is often present is not enough. This is reflected in the high number of caseworkers
from the African and Afro-Caribbean communities, while the number of high-level managers
remains very low. Those who reach positions of leadership often end up feeling isolated, not
only in their workplace but also in the community where they can be ostracised. Working in
isolation and against the system, faced with prejudices, often from people who would be hor-
rified if they were told that their behaviour is in anyway racist of discriminatory, they are ste-
reotyped as being disorganised, unable to deliver, causing trouble if they speak up or not tak-
ing their responsibilities if they don’t. This same conversation has been going on for decades,
yet very little has changed. The system is geared to make people fight each other, rather than
working together. As taxpayers, Black communities need to actively start demanding a share
of public funds and a seat at the table as well as building their own table to sit at, in line with
the notion for us by us (FUBU). To succeed, a platform has to be created that can not only en-
gage new creative leaders but also create accountability in the organisations and systems that
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 7
are in place and address the territorialism of organisations. We can all recognise the issues,
but we need to move on and come up with creative solutions.
Too much focus is being put on HIV, people’s lives are not separated and there are
many layers of intersectionality. Young people need to find participation outside of HIV. They
need to be equipped with open and transferable tools, such as public speaking and other life-
skills. Peer mentoring, for example, does not only have to be around HIV. Those skills can be
transferable to other areas of life. Ultimately the best outcome for young people is to be able
to get on with their lives and not be defined by their HIV status. The notion of HIV leadership
needs to be defined, both in terms of its value to the individual and to the community, but also
as something that can be done for a while before moving on, taking a break or making it only
a part of a persons wider interests. Leadership is about valuing people different skill sets: “I
might not be a good speaker but I might be a very good listener”. There is also a tendency to
think of leadership in terms of the voluntary sector, but the HIV sector is a broad church and
future leaders can be clinicians, researchers, policy makers, funders, organisations’ trustees
and more. There are multiple layers of leadership.
One of the challenges is to encourage people from the African and Afro-Caribbean
communities who think they cannot become leaders. But looking at the past, people from Af-
rican and African-Caribbean backgrounds moved from the UK all over the world and shaped
what is happening globally. Some of the first studies on African men who have sex with men
originated from the UK and it prompted the world to think about Africa. Some of the results
achieved at the time also demonstrate that change can happen with little or even no funding.
Leadership is about people who can innovate but also about people who are willing to share
with the rest of the world. In the 90s, THT ran the Future Leader Project, which was set spe-
cifically to recruit people from the Black African communities. There were amazing place-
ments, however, the criteria to get admitted were too high and for organisations with little
money, creative strategies to do this in an affordable way need to be developed. Some of the
answers are already there and we can build on the foundation of what has already been done.
Similarly, we can look abroad and learn from other countries.
Mentoring is crucial in terms of sustainability, it is hard to grow into leadership with-
out mentors, but how many people are willing and have the time? Do people even see this as a
possibility in the community and more importantly who is going to make a change? Young
people living with HIV today are not getting the services people got in the 20th century, they
are accepting they will do with less so how do we manufacture awareness that people need to
be involved and make a change in their own way? Everyone has a responsibility. What can
each of us do to bring change? It can be as simple as filling a form and knowing that this in-
formation will contribute to a change and ultimately it is about an individual’s active partici-
pation. Once people realise they have the power to make a change in their own way, leader-
ship is not so far. It will take individual responsibility to inspire community members, but
people need opportunities and a forum for participation where they can grow, build confi-
dence and overcome issues of isolation.
There is no leadership at national level, someone who can bring us together. Not hav-
ing a national network makes it very difficult to communicate effectively across the country.
It would be helpful to know what everyone is already doing, who is doing peer mentoring,
what are the spaces where people can work together, who is working on intersectional issues
etc. Being able to have a voice together rather than as individuals is very powerful. Where is
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 8
the one group that represents BME issues and considerations, whether it’s on PrEP or others?
There is a need to come together and drive forward strategy and reclaim the narratives. A na-
tional platform or forum would give space to campaign and self-organise without organisa-
tional constraints, while giving a certain legitimacy to all our voices on a range of issues. As a
collective force, it is easier to move forward and create change. PrEP activists in the UK have
shown that with determination, dedication and passion, it is possible to move beyond talking
about change, projects and actions can be initiated and funding will follow.
Create a forum where there is space to campaign and self-organise without organi-
Research our communities and what leadership mean to them and set clear points
as to what our communities want.
Develop a list of people willing to mentor, listing their areas of expertise, and of
those who require mentoring, and ensure people are aware of their existence.
Identify young people willing to engage further, pull them in and champion their
potential through mentoring, training, and development of transferable life-skills
within the framework of a new and accessible future leader programme.
Develop solution-focus approaches as a model and reach out to our allies and our
mentors to support us in questioning our organisations to build a conducive, sup-
portive and learning environment that provides and enables leadership opportuni-
Provide education on what leadership and participation is, how it affects a person
positively and the value of volunteering beyond monetary terms with links to per-
sonal and career development.
Support for identification, acknowledgement and celebration of skills. People may
not know and recognize the skills they have and may need to work with a coach to
help identify them
“Instead of asking for a seat at the table, we decided as black gay men to build our own.
Confident in the knowledge that if we build it, if we made it strong, if we made it authentic,
our fellow black gay men would come, and they would take a seat at that table”.
Marc Thompson - 2017
Where’s the hope: Dialogues for solidarity – Session 3 Coordinated by ReShape 9
Where’s the Hope? Dialogues for solidarity
Life experiences: Trans* communities
With guests Michelle Ross and Aedan Wolton from CliniQ
Session 4 of the series
Date & Time: 31 August 2017 @ 7pm
Location: Stillpoint Spaces, 23 Clerkenwell Close, London EC1R 0AA
Please print out a map when you come the first time. It’s hard to find if you don’t. Very
near Farringdon Station.