Karl Hayden talks with Alan Mooney
Body Positive (BP) was started in 1986 by five people who were themselves HIV positive or living with AIDS. There are over a hundred ‘members’ in the Group.
BP is the only self-help organisation for people living with HIV or AIDS directly, their partners, family members and friends. Members of the group work with the media to heighten awareness of HIV and AIDS. Services are offered on a non-judgmental, non-directive, non-discrimination basis. They say in their manifesto that they are open to all people directly affected by HIV or AIDS. It is a national organisation.
According to BP’s literature, the organisation offers one to one support and information through support workers and people who are themselves HIV positive or living with AIDS.
They go to schools and community based groups to talk about living with HIV or AIDS, how one becomes positive, how to protect oneself from becoming positive and to dispel misinformation that exists concerning HIV and AIDS.
BP also works with government agencies to make changes in services and provision of services for affected people. BP is networked with AIDS organisations in other countries. There is a drop in centre for anyone who wants to come for coffee or informal conversation.
Karl Hayden explained that BP has only one counsellor trained specifically to work with the emotional aspects of the illness in a person’s life. The kinds of issues can include grief, sexuality, self-image, confidence etc. Apart from this counsellor there are a number of support workers whose function is to look after the practical needs of individuals using the service. These needs can include advice on housing, medical issues, provision of condoms, referral to needle exchange etc. There is a link between the support workers and various government departments, especially the Eastern Health Board and Social Welfare.
So there is a clear distinction in BP between therapy and self-help. This is very important according to Karl. When someone comes to BP for help the fundamental criterion applied is to allow that person to set the pace. Some are very unsure of themselves so support workers do not try to direct the person in any way, nor do they judge the life of the individual. It has taken a great deal of courage to make the move and that courage needs to be respected fully.
The support worker helps the visitor to assess their needs. BP tends to avoid lists of needs because the individual’s need could be anything from just a chat to finding somewhere to live. The needs of the visitor are discussed in detail and this is important, says Karl, because it helps to avoid pitfalls in having practical needs met. Such pitfalls can include not knowing the procedure to obtain statutory rights, not having good enough information about safe sex, dealing with a medical profession that sometimes resists the idea of someone wanting to know all the information about treatment, including negative side effects of retroviral medication and which, at times would prefer to have a pliant and unquestioning patient.
Nothing can be assumed, so detail is important. The key point is to allow the person to decide for themselves what they want to do with the information. This can be hard for the worker at times because the visitor may be taking the longest route and the desire to short circuit that can be strong.
Karl emphasises that a deep respect for the person’s right to choose their direction is paramount and that means going at the pace of the individual. The support worker needs to enter the visitor’s world without preconceived notions. The line is drawn only when the visitor is not capable of a meaningful interaction with the worker. For example, if a person is obviously high on drugs or alcohol then they cannot usefully engage in conversation. We will talk to them, says Karl, but not about details or specific issues.
BP used to run self-help support groups but that declined because the boundaries between self-help and therapy became blurred. BP is a self-help organisation and not a therapy centre. When the group dynamics became very complicated and the need for more experience and training in therapy became obvious there was a choice point. Do we do therapy or are we primarily a self-help group? Also with the complexity of group interaction members began to lose the sense of common identity with the whole group.
That’s when BP changed its format of group support to a One-to-One relationship. This takes the form of someone who is further along the line of integrating the experience of being HIV positive or living with AIDS working with a newer person. Matching these diads is important and it works like this: If I come to BP for help a support worker will sit down with me and discuss my situation. Out of my interaction with the support worker a match between me and a member of BP will be made. The purpose is to develop a strong, trusting supportive relationship with this person so that I can develop the insight and strength to deal with the practical difficulties of being HIV positive or living with AIDS.
There is a danger that dependency can occur. This is counterproductive and BP is aware of this, therefore, built into the arrangement is a requirement for regular consultations with a support worker. Can’t this bring either person in a diad into therapy issues, and therefore cause a conflict within the relationship structure of BP? Yes it can and BP is looking at the idea of a “contract” or mission statement. Such a contract would be clear to the members and to the public using BP. The only “contractual requirement” of someone coming to BP for help would be that they be as open and honest as they can be within the context of the diad relationship and in relation to their HIV status and its implications in their lives.
There is still a lot of working out to be done in the subtleties of what self help is and where it leaves off and therapy begins. Because the boundaries get fuzzy BP recognises the importance of having a clear definition of its relationship with an individual from the beginning of their contact with the organisation. The idea being that if the path is made clear from the beginning, there will be less problems for the individual in staying on it and less problems for support workers and members in knowing their role.
Where therapeutic issues are evident, BP is clear that these are outside its remit and in the province of those trained to work with them. BP will refer to its own counsellor or to appropriate agencies.
Karl Hayden is with Body Positive for three and a half years. He coordinates its support services and is spokesperson with the group. He is currently writing a book – a Self Care Manual – for people with HIV or AIDS, it is sponsored by the European Commission and the Dept. of Health. It is proposed to be available from January 1995 – free of charge to people who are Positive. He can be contacted at Body Positive 24/26 Dame Street, Dublin 2 Tel. 671 2363/4. Fax. 671 2404