Chair: Alice Welbourn, ICW
Facilitators: Andrew Hanuman and Judith Brownsword, Open Door Brighton
Rapporteur: Tom Matthews, NLTSG
This workshop, attend by 30 people focussed on the achievements of a group of people living with HIV who started a creative writing therapy group.
Andrew and Judith gave participants some background about the project. The ‘Xpress Yourself’ project in Brighton was formed by a group of people living with HIV who got together to produce writing and poems about their experience. Their book, ‘T Cell Chronicles’ was distributed free at the workshop. It is for people living with HIV, their friends, partners and families. It can be used as a useful teaching aid in relation to the issues faced by people living with HIV. The book is suitable for an adult reader, as well as older teenagers who will be receiving sexual health education within the school system.
Members of the group have also worked on producing a website where all the work produced by the group is published. It is interactive and any interested person from anywhere in the world will be able to send written articles and stories (www.opendoorbrighton.org) and click on the ‘Xpress yourself’ link.
Twenty-one people contributed and topics covered include love, relationships, living with medication, survival, sexuality, drug use, self destruction, remembrance and hope.
The book did not have enough contributions from people from diverse backgrounds, even though much work was done to try to address this. The group had found that workers or organisations often acted as gatekeepers to service users and some had a ‘nanny mentality’. This meant that they did not refer people living with HIV to the project if they felt that an individual may not be in the right state of mind to take part. Participants of the workshop from Black African communities were asked what they thought about this and clearly stated that they did not wish this kind of ‘nanny’ attitude by workers or organisations and would define their own vulnerability in order to make their choice as to whether to be involved in such a project.
Andrew and Judith also took the opportunity to share some tips from lessons they had learnt along the way, in order to give any participants wanting to set up their own project the issues to consider. This included information about:
Seeking support (identifying support needs, peer support versus support services)
Practicalities (getting in touch with others, meeting space, funds)
Being realistic (time, energy and commitment)
Project planning (aims, uniqueness, reasons others should support it)
Involving communities (ownership, sharing resources)
Getting started (advertising, meeting deadlines, sharing responsibilities, allowing for the unexpected)
Skills and knowledge (acknowledging and utilising the different skills people have)
Keeping on track (allowing for drop out, slowing down, being realistic)
Looking after yourself and others in the group
The facilitators then discussed issues around getting funding for any new project and suggested the following as a useful checklist:
Check you are not duplicating what’s already been done
Keep focussed and be ready to argue your case for the project
Passion for your idea will impress on others that you will follow through
Do you need outside funding?
Who can help with funding applications?
How will you account for monies?
Do you need a bank account?
Not everything costs money – do you really need to find money or are the resources already in your community?
Andrew then asked participants if they could spontaneously write down some of their thoughts and feelings about the conference. This is what one participant said afterwards:
“After only ten minutes, we began reading out to each other what we had written. There were gasps and spontaneous applause at some of the contributions, and by the end several people were crying. Many feelings had been released, including grief and helplessness in the knowledge that so many far away, including people dear to some of us, were dying. A powerful, moving and yet joyful session.”
Peer support was paramount for the ‘Xpress Yourself’ project
People living with HIV had ownership of the project
The project highlighted the importance of reaching out to different communities
Organisations should work in partnership with people living with HIV as opposed to providing a service or project.
Organisations or workers should act as information providers rather than gatekeepers
African people living with HIV should be encouraged to tell their stories
This workshop was evaluated by 12 people. The youngest participant was 27 and the oldest was 57. The average age was 45.
Gender
7 male, 5 female
Ethnicity
7 white, 5 black African
Sexuality
6 heterosexual, 6 gay
Usefulness
Very useful |
Useful |
Not useful |
75%(9) |
25% (3) |
0% (0) |
NOBODY said not useful
7 people set themselves action points:
Put my emotions on paper
Setting up group
Write my life story
Focus more on my writing
Contact the website and carry on writing
Go back to writing about HIV, started late 1980s
Hope - I will get going on…
Move on to Having A Family