This
World AIDS Day marks the 10th anniversary of a commitment of
governments to the greater involvement of people living with
HIV/AIDS (GIPA) in the decisions that affect them. To mark the
occasion the International Federation and the Global Network
of People Living with HIV/AIDS (GNP+) have conducted a joint
project in which people living with HIV/AIDS evaluate GIPA in
action. The project gives an opportunity to reflect on the current
status of GIPA and what can be done to improve its implementation.
Here, David Mukasa of the Uganda Red Cross Society (URCS) and
of the national forum of people living with HIV/AIDS gives his
contribution:
When did you become involved in HIV/AIDS work and why
are you involved?
I got involved in AIDS work in 1992 after losing my teaching
job due to the high degree of stigma and discrimination. I happened
to have tested HIV-positive back in 1989 and decided to go public
about my status and was encouraged by my close family and colleagues.
After my first radio programme in which I declared openly and
publicly my HIV status, I was rejected and dismissed from my
teaching job. “We can no longer work with you, given the
circumstances we have heard from reliable sources” the
college principal said. I had no alternative but to leave. I
was supported so much by my parents and close relatives during
that time. My life in HIV /AIDS work really stated when I was
trained as a trainer of trainers. Along the way, I have found
AIDS work stimulating, making me feel and be myself, so I think
this is another reason why I am involved. Also, knowing that
I am making a positive contribution worthy of the appreciation
of others has been a great motivation.
Are there other PLWHA working with you? What do they
do and/or at what levels are they involved?
Yes, there are. In the URCS, some are working as home-care facilitators,
community mobilisers and educators, programme officers and general
volunteers. Using the UNAIDS-recommended pyramid structure of
PLWHA involvement, the majority of PLWHA in the National Society
are involved mainly at four levels: target audiences, contributors,
speakers and implementers. On the other hand, at the National
Forum (network) of PLWHA, we decide on the strategic direction
of our PLWHA networks with some designing programmes, others
are implementers and supervisors and some have recently become
involved in designing policies.
Have you heard of GIPA? When and how did you first hear
about it? What do you think it means?
Yes I have. I must have first heard about it during the International
AIDS Conference in Vancouver, Canada, in 1996. GIPA, the Greater
Involvement of People Living with HIV/AIDS, means the empowerment
of PLWHA for increased participation in HIV prevention and AIDS
care, support and treatment initiatives. Initially, many thought
it meant PLWHA sharing their life experiences, but to me this
is limiting our potential as positive people. GIPA means the
inclusive participation of PLWHA at all levels – community,
national, regional and international - for the enhancement and
facilitation of supportive environments. GIPA means providing
the infected and affected with opportunities to constructively
participate in programmes and other endeavours to reduce the
harm caused by HIV or AIDS.
When and why did your organization start to involve
PLWHA? Does it involve PLWHA through the assistance or guidance
of some other group or agency?
Uganda Red Cross Society first involved PLWHA way back in the
mid-1980s when it supported Philly Bongoley Lutaaya to document
and produce his biographical educative film to target young
people – the “window of hope” between 5 years
and 15 years – to avoid infection and to encourage those
who are already infected to live an anxiety-free life on the
principles of positive living and positive attitudes. URCS directly
partners with PLWHA networks at different levels formally and
informally. For example, URCS branches work with and support
district networks while headquarters partners PLWHA groups at
national level. The Red Cross was a key partner to PLWHA in
organizing and hosting the 11th International PLWHA Conference
in Kampala in October 2003 where direct assistance and guidance
were provided.
Does your being HIV-positive impact in a good way on
the functioning and outcomes of the work of the organization
in which you are involved? What do you think it is about your
being HIV+ that makes that difference?
My being HIV-positive has had a good impact on URCS in transforming
the general perception of the whole ‘family’ because
other employees and volunteers have come to appreciate me as
I am, which was not the case back in late 90s. I remember over-hearing
one staff member saying, “When is he going?” He
was not comfortable with my presence, sickly looking as I was
those days. I have tried to make a difference with the words
I use: always positive, always with hope, always with a future
in them, and always with my head held high. It is important
to dispel the sense of hopelessness that is contagious. The
functioning and outcomes of the work being done by URCS with
or for PLWHA is undoubtedly intended to improve their quality
of life, reduce stigma, discrimination and denial, and improve
the general openness about the epidemic. Many say openly that
I am an exception.
How do you feel about yourself since your involvement
in the organization? Has it changed your beliefs and attitudes
toward HIV/AIDS? How about your beliefs and attitudes regarding
other PLWHA? How do others perceive you? Have their attitudes
and beliefs changed?
I feel good about myself and more determined to show people
here and in our implementation areas that it’s not other
people who should decide the destiny of PLWHA or the way we
should live. We can be assisted to build our own capacity to
live responsibly for the comfort of those we associate with.
I feel there are people who are highly misinformed about the
lives of PLWHA and such attitudes should change if we are to
successfully combat stigma and discrimination and make the Red
Cross truly a better home for PLWHA. The information gap is
still big despite the fact that URCS is a caring organisation.
We need to design a down to earth approach with appropriate
strategies to put in place a workforce programme and periodically
revisit the Workplace Policy to accommodate the changing circumstances
of this dynamic epidemic. Without the participation and input
of PLWHA, the proposed workforce programme carried no weight,
unlike the other projects where our input during the design
was respected. The problem was that some personalities didn’t
like the idea of PLWHA sharing the credit. People’s attitudes
towards PLWHA - that they are supposed to behave in certain
ways to keep others safe or keep healthy - should change.
What are the barriers and challenges for your involvement?
How about for other PLWHA working with you? What can be done
to overcome them?
I am realizing that whatever I can do, whatever my skills, there
tends to be a limitation to how far they would have me involved.
If you compare competencies in the true meaning of the word,
some PLWHA have better skills than the people being put in permanent
positions – is it because they are HIV positive? This
is where we have to reflect on the issue of disguised stigma
and discrimination because it has eaten up and is continuing
to slowly influence our organization. It limits the extent to
which GIPA principals can be exercised, and therefore the involvement
of PLWHA in designing, implementing, monitoring and evaluating
programmes and projects as equal partners. There seems to be
a general belief that PLWHA cannot do more than voluntary work,
but if you honestly look around, evidence contradicts this.
How does your involvement with this organization pave
the way for other PLWHA to become involved and contribute meaningfully?
Generally speaking, I am a PLWHA mobiliser and together with
other attributes in my different roles and capacities, I empower
other PLWHA to contribute meaningfully to this fight. URCS also
provides opportunities through its programmes like home care,
which facilitate the formation of positive living clubs and
other young positive activities. As a person coordinating these
HIV-positive people’s activities, innovation means paving
the way for more PLWHA to get on board, becoming more involved
and contributing meaningfully.
Do you think your involvement is an example of GIPA
in action? Why or why not?
Yes. As I first got involved with the URCS HIV and AIDS activities,
it provided a platform for a PLWHA perspective to be incorporated
in the strategic design of the activities. With others coming
on board, our visibility and collective voice can be recognized
even the more.
What do you think of GIPA as a strategy?
GIPA as a strategy is the ideal process through which the havoc
created by HIV and AIDS will be overcome. In the first place,
it will harmonize the involvement of those affected or infected,
which will ensure improved mutual co-existence and living without
fear, anxiety or stress, which are so common today. GIPA has
been shown to overcome the worst forms of stigma and discrimination.
Nonetheless, it must be a strategy with continuous support,
otherwise if there is laxity; humanity is a weak being that
would easily forget the existence of HIV. Complacency can be
detrimental.
How would you improve your and other PLWHA’s involvement?
How do you see the future of your and other PLWHA’s involvement?
Improving my involvement requires more empowerment to improve
skills for implementing and participating in AIDS activities.
This means building the capacity of PLWHA in general is a prerequisite.
Getting involved in networks and associations of PLWHAs or taking
active roles in our respective organizations would improve involvement.
Our being open about our status and overcoming stressful situations
which keep us isolated, in hiding and fear would also facilitate
more involvement. Supportive environments and a policy framework
that supports PLWHA rather than inhibiting their participation
are required. The way things are, PLWHA associations and networks
are becoming more dynamic and accountable, so I think the future
of PLWHA involvement will be much better in the future than
how it has been or is now.
How do you see the future of GIPA? How would you like
GIPA to be implemented in the future?
As mentioned in my last statement in the previous question,
GIPA’s future might experience greater heights because
PLWHA have to a large extent identified their strengths and
weaknesses, which will help us perform better. Despite some
friction which still exists here and there, PLWHA networks are
moulding their members into a better force to actively participate
in HIV prevention and AIDS care and support work for a better
world. Other stakeholders are also appreciating the unique contribution
PLWHA can play and the added value of involving us at all levels
rather than being only service recipients.
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