Marginalisation and discrimination of PLWHAs by AIDS NGOs

[Guest guest]

Dear Forum,

The effort for prevention and care of HIV/AIDS in the north-east India

particularly in Manipur is really commendable. The prevalence of HIV in the

state is extremely high with 1.33% among the antenatal mothers – which is

indicative of the prevalence among the general population as per the NACO

surveillance guidelines. The changes during the decade brought by both the

Government and NGOs in terms of awareness building and care of the PLWHA had

been appreciated from different quarters. Manipur SACS also claimed that rate of

HIV infection among the high risk groups, particularly IVDUs has been

significantly decreased as a result of the strategies undertaken by the society

(It will be worthwhile to mention here that there has always been a

counter-claim that in the absence of any baseline data how would it be possible

to come to the conclusion that the decrease is the impact of programmes

undertaken by the society).

The change of attitude and acceptance of PLWHA in the community is, no doubt,

increasing and as a result more and more self help groups of PLWHA are coming

up. However, it is very unfortunate that as the programme advances, and despite

all the tall claims, the issue of marginalisation and discrimination of PLWHA by

the so-called professional NGOs working on the HIV/AIDS issue is increasing.

The NGOs are mobilising a number of PLWHA through self-help approach. These

self-help groups of PLWHA are organised for the sole objective of showing as

impacts of their programmes to their donors. We are frequently assembled at

drop-in centres (which we call zoo now) and let us sit there so that these

‘professionals’ can point their fingers to our faces and say here is the

situation which need to be intervened, see the herpes he has or this chap is

having TB.

But how long we can tolerate such inhuman treatment? What the NGOs do not know

is we are also growing like any other human – knowledge, assertiveness and the

self help group itself. In fact the NGOs should be happy to see the growth and

must think of providing more opportunities to grow further so that our group can

sustain.

But the NGOs always try to divide us so that we cannot stand by ourselves. They

want us to remain dependent on them so that they can use us as showpiece. The

effect is more and more members drop out of frustration or get relapsed to their

habit of injecting drugs. The situation is worse for the self-help groups of

affected, usually self-help groups of women. Many PLWHA are victims of such

manipulation and more and more falling prey to the so called self-help group

activities of NGOs.

When our self help group namely ‘You and I’ was formed 5 years ago we had all

the faith in the wisdom of Regional Resource and Training Centre (RRTC), Galaxy

Club Imphal, Ministry of Social Justice and Empowerment, Government of India.

In the name of giving jobs and monetary supports for income generation, we had

been showpieces several times, sent errands for the organisation, had us clean

their offices every fifteen days. But what we have gained now – nothing. When it

was realised that the group was not going get the monetary supports earmarked by

the UNODC-ROSA, we started mobilising fund by ourselves. But RRTC destabilised

us at different stages and the group almost collapsed as many members had been

lured with money.

The last blow was when we were driven out from the drop-in centre where our

self-help groups usually meet. Thanks to intervention of the community

particularly local youth clubs, women organisations, shopkeepers and

well-wishers that it was decided that the RRTC must vacate the room and it

should be rented to us.

The RRTC left the room but not without causing further harms that their hoods

had broken all partitions, taken all the furniture, electric fittings and the TV

which the UNODC-ROSA donated to us. But what we can remember is it was the NGOs

who had given all the idea of self-help group, its sustenance and our rights

many a times at their grand training and workshops.

It is time these self-style professionals not only expand their activities and

amass money in the name of HIV/AIDS, but also keep some ethics so that the PLWHA

will not be mistreated and misguided.

Like the human right, which is violated by the security persons who are

supposed to protect the rights, when confidentiality, rights and dignity of the

PLWHA are violated by the people who are supposed to empower us and those who

are earning a living from the issue, it is really hard to find words to comment

on.

SJ Singh

Imphal

E-mail: <ex_idu@...>