Africans with HIV are finding a new and effective
voice through Africans Getting Involved. Amanda Elliot reports
Africans
Getting Involved (AGI) does exactly what it says on the tin: it encourages
increasing numbers of HIV positive Africans living in the UK to shape and
influence their services.
This is no mean feat for a group of people all too often paralysed with fear
about disclosing their HIV status to other Africans at support groups or clinics.
In the increasingly competitive HIV charity sector, AGI stands out as a group
led by and for Africans with HIV, able to provide input across the sector
without ruffling feathers or stepping on toes.
A growing membership
Launched in 2004 at Changing Tomorrow, the national conference for people
living with HIV, AGI now boasts more than 120 members. They come from across
the UK, but
all originate from somewhere on the African sub-continent.
Some AGI activists already work or volunteer for HIV organisations like UKC
and Positively Women, but attend AGI in a personal capacity. Some have uncertain
immigration status and draw strength from the group as they battle their way
through the system.
Edith Kaggwa (above, third left), a mother of four and grandmother of one,
was elected as chair of AGI last month after a year providing administrative
support. Edith explained how the AGI was formed by individuals unhappy with
others deciding what was ‘good for’ HIV positive African service
users.
“Lots of other people were doing things for Africans and deciding what
was best for us. We saw there was a big gap between peer support at the grassroots
and policy making at a government level.
“Until we came along, HIV positive Africans had little input into the
shaping of NHS and social services. The only way to plug this gap was to encourage
greater involvement of Africans living with HIV.”
Adapting a successful formula
At the conference, the founding members looked at the way gay men had become
empowered through organising themselves and getting involved. They decided
this was something they should try too, by adapting the approach for African
men and women.
AGI’s other aim is to influence government policies through campaigning.
They want HIV positive Africans in the UK to have the same rights to social
and economic welfare and healthcare as others with HIV. They also campaign
and lobby around the rights of HIV positive asylum seekers.
Finding strength in support
Many AGI members have felt the full force of UK immigration law through detention,
dispersal, electronic tagging and deportation. This has inspired them to provide
voluntary outreach work to other HIV positive Africans in detention. AGI member
George is one of those supporting HIV positive asylum seekers locked up in
UK centres.
His two mobile phones constantly buzz with calls from detainees separated
from loved ones or denied medication and legal advice. As PN went to press,
he was busy trying to prevent an HIV positive mother from deportation without
her one-year-old.
AGI also keeps in touch with deported members and volunteers and offers support
in anyway they can. They attend immigration hearings to lend moral support.
Member Beatrice says: “We’re here for the African people to have
a voice. We must take control, fight for our sisters and brothers, in this
time of changing legislation.”
AGI works quietly behind the scenes. Over the past year they have presented
at conferences and work with statutory and voluntary organisations supporting
Africans with HIV. AGI has secured pan-London representation through a place
on the public and patient involvement sub-group of the London HIV consortium.
“We encourage Africans to get involved in user involvement programmes
inside the NHS and other organisations,” says Kaggwa. “This helps
them to better accept their HIV diagnosis. But it also enables us to get our
voices heard and help shape appropriate services. But getting involved is
also important for building self-esteem.”
Low self-esteem is one of the many challenges facing African men and women
living with HIV in the UK. AGI helps tackles this by confidence building and
enabling members to learn to change things. AGI’s work programme this
year includes workshops on service involvement and capacity building workshops.
They are also planning information days, focus groups and research.
Creating change and collaboration
Other challenges include stigma and discrimination, often from within the
African community itself, and exclusion from appropriate support and care.
Munasimenda (far left) is currently fighting his own battle to stay in the
UK. He joined AGI to create change and collaborate with others.
“I want to change government and services to better respond to my needs.”
Onesmus (second left) joined AGI because he wants to see more HIV positive
African men taking a lead. Balam (far right), wanted to build on his work
around user involvement. Members meet every six to eight weeks while the nine-strong
management steering committee meets monthly. A limited budget means the group
communicates mainly by email and word of mouth.
Empowerment and involvement
So why is AGI different from other groups?
“We take every person as an individual,” says AGI. “We empower
them at their level of involvement. No one is forced into disclosing their
HIV status as a means of involvement. We mentor individuals at their own pace
to reach their chosen levels and areas of involvement. We aim to empower,
mentor and train people to move to higher levels of involvement, from their
family and community to national and parliamentary level, or even international.”
• For more details on AGI, call 0207 564 2180 or email ekaggwa@ukcoaltion.org
• Thanks to the current founders of AGI; Lambeth and Croydon PCTs (a
call for all PCTs to get involved) and UKC support.
