STOP AIDS NOW MANAGING HIV/AIDS IN THE WORK PLACE
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- STOP AIDS NOW MANAGING HIV/AIDS IN THE WORK PLACE
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STOP
AIDS
NOW!
EH IIITU1IEF HI 4IBS EBIBS.
BIMOS. ICW. MEMISI H M»l»
MANAGING HIV/AIDS IN THE WORK PLACE
Workshop Proceedings
o
November 22, 2005
Bangalore, India
Cordaid^
AIDS FONDS
icco
n(o)vib
OXFAM NETHERLANDS
Workshop Proceedings
MANAGING HIV/AIDS
IN THE WORKPLACE ‘
November 22, 2005
Bangalore, INDIA
CONTENTS
Preface
1.
WORKSHOP REPORT
1.1.
1.2.
Overview: Workshop- Managing HIV/Aids in the Workplace
List of Participants
2.
WORKSHOP BACKGROUND MATERIALS
2.1.
2.2.
2.3.
2.4.
Invitation Letter to Participants
Workshop Schedule
SAN! Folder
Thank you Letter
3.
PARTICIPANTS PRESENTATIONS
1
19
29
30
32
35
0
3.1.
3.2.
3.3.
3.4.
3.5.
3.6.
3.7.
HIV and AIDS Policies at the Workplace - Christy Abraham, ActionAid India
New Entity for Social Action: Life with Dignity - John Dalton, NESA
Coping Strategies for Internal Mainstreaming - Indumathi Ravi Shankar, SIAAP
The Basis of Stigma and Discrimination - Sanghamitra Iyengar, Samraksha
Managing HIV/AIDS in the Workplace: The ILO Code of Practice - Edwina Pereira, INSA
Managing HIV/AIDS in the Workplace: The BMST Experience - Shalini Gambhir, BMST
SAN! Managing HIV/AIDS at the Workplace Initiative - Yvette Fleming, SAN!
4.
OTHER REFERENCES
4.1.
Joint ILO/WHO Guidelines on Health Services and HIV/Aids
International Labour Office, Geneva, 2005 - Refer to the Websitehttp://www.ilo.org/public/english/dialogue/sector/techmeet/tmehs05/guidelines.pdf
4.2.
Understanding and Challenging HIV Stigma: Toolkit for Action
Trainers Guide, September, 2003 - Refer to the Website: www.changeproiect.org
4.3.
Draft legislation, Lawyers Collective
Refer to the Website- http://www.lawyerscolective.org/lc hivaids/draftlegislatio n
4.4
The HIV/AIDS Bill 2005, Lawyers Collective
Refer to the Website- http://www.lawyerscolective.org/updates/HIVAIDS-bill-2005
36
38
44
47
48
51
53
56
PREFACE
It is with pleasure we send you the report of the workshop “Managing HIV/Aids in the Work Place” This meeting
under the aegis of Stop Aids Now! was hosted by the Hivos India Regional Office. The other co-financing
organisations Cordaid, ICCO and Novib along with Hivos brought some of their partners together for this one day
meeting.
This report follows a comprehensive info-pack prepared by Hivos in preparation of the workshop. SAN!’s
representative Yvette Fleming worked extensively with the Programme Officers of CFA’s - Lisette HombergenICCO, Julie Love - Cordaid, Gertjan van Bruchem - Novib and Hivos to provide a conceptual anchoring to the
issues under discussion. The report provides the reader with a glimpse of the complexities of issues such a debate
brings to bear upon institutions interested in the welfare of staff. The ILO workplace policy, along with the
internal policies of many organisations provide organisations with pointers on how to go forward with such a
policy formulation.
We thank Yvette Fleming of Stop Aids Now! and all the participants for making the meeting a serious exchange
of ideas and commitments. We wish to put on record our sincere appreciation for the efforts of Christy Abraham,
Indumathi Ravi Shankar, John Dalton, Asha Ramaiah, Edwina Pereira, Shalini Gambhir, Sanghamitra Iyengar
and Yvette Fleming who acted as resource persons for the workshop. We especially thank Sanghamitra Iyengar of
Samraksha for her extensive involvement with all of us in developing the conceptual framework of this meeting
and in facilitating the discussions. Gita Srinivasan gets special mention for the competent rapporteuring of this
meeting. Our thanks to Julietta and Hemalatha of Hivos for the extensive preparatory work done in organising the
meeting, the communications and the final preparation of this report.
o
We hope that these preliminary efforts will be helpful for those who would like to carry forward the important
lessons of workplace policies. Several organisations are already walking down that road of implementing such
policies, the contours of which are elaborated in this report. These experiences would provide useful examples of
how the work may be carried forward.
Shobha Raghuram
Director, Hivos India Regional Office
For copies kindly contact:
Ms. Hemalatha
Secretary
Hivos India Regional Office
Flat. No. 402, Eden Park
No. 20, Vittal Mallya Road
Bangalore 560 001
Ph.No.OO 91 80 22210514/41121002
Fax. No. 00 91 80 22270367
E mail: hemalatha@hivos-india.org
Bishwadeep Ghose
Programme Officer, Hivos India Regional Office
o
WORKSHOP REPORT
MANAGING HIV/AIDS IN THE WORK PLACE
Workshop Report
November 22, 2005
Bangalore, India
Overview
Managing HIV/AIDS in the Workplace was a one-day introductory workshop initiated by Stop AIDS
Now!, a partnership of 4 Dutch Co-Funding NGOS1 and one AIDS specific organization. Indian partners
currently receiving funds from Hivos, ICCO, Cordaid, and Novib (and primarily those based in south
India where HIV prevalence in the general population seems to be highest) were invited to take part in the
event.
The workshop looked at the many ways HIV/AIDS may (and already does) impact individuals and
organizations in the Indian work world. There was sharing and discussion of existing guidelines and
actual experiences with interventions and policies on HIV/AIDS at the workplace, including the types of
supportive underpinnings required in order for a policy on HIV to prove functional. The destructive
power of HIV/AIDS related stigma and discrimination - in its many forms and manifestations, for the
individual and ultimately for the organization - was repeatedly hammered home.
The STOP AIDS NOW! workplace initiative was formally presented and local partner organizations
began to look at how they might want to take the initiative forward in India. A varied set of ideas on
process, form, and key elements for a networked initiative emerged. While the larger group did not have
adequate time to agree on a general framework for moving a partnership forward, a sub-committee of 15
organizations was nominated to chalk out a rough plan of action.
At the end of the day, it was apparent that, while there was evidently a great deal of common thinking, far
more questions than answers had emerged related to the SAN! workplace initiative in India. By far the
most recurrent theme and question of the day was how to turn HIV and/or the workshop premise into a
larger opportunity for societal change:
There was HIV...
...as an opportunity to activate our collective social conscience and work on discrimination of all
types;
.. .as an opportunity to live more positively.
There was the SAN! workplace initiative
1 Aids Fund, Hivos, ICCO, Memisa (Cordaid), and Novib (Oxfam).
1
...as an opportunity to engender our workplace policies;
...as an opportunity to examine the close connection between out-reach and in-reach and to
redefine what we mean by the ‘workplace’;
...as an opportunity to elaborate larger social support structures for workers in formal and nonformal sectors in India;
...as an opportunity to influence how international donors partner with local counterparts;
...as an opportunity for this group of partners to work together more broadly on HIV, particularly in
terms of advocacy.
Welcome & Introduction
Dr. Shobha Raghuram (Director, Hivos India Regional Office) welcomed both Yvette Fleming (Policy
Officer for the Dutch Aids Fund and Project Officer for SAN! where the workshop concept evolved) and
Sanghamitra Iyengar (Director - Samraksha) who, as the workshop facilitator, was to help deepen the
critical enquiry and dialogue SAN! had already initiated among its Dutch co-financing agency partners.
She explained that HIVOS, as the only SAN! partner with a regional office in south India, was hosting the
workshop on behalf of all the SAN! partners. Before passing the microphone on, Shobha requested that
the participants treat the day as a space for serious discussion and questioning. “No one here may have
immediate answers to the questions that will emerge,” she said, “but we need to further discussion on the
issue of managing HIV/AIDS in the workplace.”
A brief introduction was provided to SAN! and the workshop’s background (See Section II - SAN!
workshop invitation). Recognizing that the HIV/AIDS epidemic did not stop at the Dutch borders and is
now everywhere, STOP AIDS NOW! had been founded in 2000 as a Dutch partnership among 4 Co
Funding Non-Governmental Agencies and one AIDS specific organization. In 2004, SAN! had chosen
three development themes: Orphans and Vulnerable Children (OVC), with a pilot project in South Africa;
Gender and HIV, under construction and led by HIVOS; and the Workplace Policies and Programs, with a
pilot in Uganda and India.
It was explained that ‘partner organizations’ all over the world have - when specifically asked - indicated
that HIV/AIDS has a direct impact on them, and yet there has been a silence between partner
organizations and their donors about HIV2. Partner organizations have not felt that they could dialogue
with their donors about HFV.
These partner organizations each have their own spirit and concept, but all share the same challenge of
HIV/AIDS. With so many partner organizations on the ground, SAN! works with and through its
counterparts and further brings these many organizations together in the response to HIV/AIDS.
Before moving on to the workshop content, the workshop facilitator provided a brief framework for
participant involvement in the day. Some of the organizations represented had been working in
2 CDRA study and Oxfam study in Southern Africa.
2
HIV/AIDS for the last 11-12 years; some had been involved in training others in HIV/AIDS; all had
worked with community; and some had worked on training the industry or community in a range of areas.
On this day, however, the question was what work had been done within ‘our own organization’ - and
whether there was a specific need related to HIV/AIDS - not only as a programme, but as policy. It was
noted that some of the exercises to come were basic and many had already used these exercises with
others. Now the issue was the relevance of these exercises for ‘ourselves’, as the partner organizations.
Expectations and Fears
A.
As a first exercise, participants were requested to write down the expectations and fears that each had
brought to this workshop.
Most expectations involved sharing, understanding, and learning related specifically to organizational
policies on HIV/AIDS. It was hoped the workshop would lead to:
• analysis of the diversity of experience represented at the workshop for commonalities and
divergences (3);
• discussion/definition/re-definition of intemal/extemal mainstreaming or ‘in-reach’ and ‘out-reach’
and clarity on how to switch or enlarge focus to include both (4);
• better understanding of issues related to HIV in the workplace (3);
• ideas about how to address these issues (including low-risk perception, children of HIV+ workers)
•
•
•
•
(3);
specific discussion of the ILO Code of Practice and its effectiveness (1);
clarity about the feasibility of workplace policies on HIV/AIDS for NGOs in India (3);
broad considerations/recommendations/guiding principles/vision for the process of creating a
workplace policy on HIV/AIDS, for the policy itself, and for implementation and sustainability of
the policy (6);
strategies that reinforce human rights of all workers without compromising the organization’s
goals and targets (1);
It was further hoped the workshop would result in various types of collaboration to:
• build a common understanding of what a workplace policy on HIV/AIDS means / implies (1);
• give space for a (shared) articulation of social and political will (1);
• create a network or partnership to support the workshop theme (2).
There were also expectations that the workshop would bring learning and sharing in the larger HIV/AIDS
context and on various HIV/AIDS related areas (6).
Fear was expressed in response to the HIV/AIDS epidemic in India and how out of control the situation
has already become (2). One concern was raised that HIV/AIDS had become something of an
‘occupational hazard’ within NGO culture (1).
3
HIV/AIDS is not adequately acknowledged as a serious issue in India. The need perception for such a
policy would therefore be low. Or there might also not be adequate support/reinforcement among ‘key
players’ from relevant government bodies / government agencies (4).
Various concerns were expressed about whether such a workshop could provide an adequate framework
for where to start and how to continue:
a) The workshop might not provide adequate time to deal with the issue or might result in
information overload (4).
b) The organizations represented were too heterogeneous to arrive at decisions related to a
workplace policy on HIV/AIDS by the end of the day (1).
c) There might be no follow-up to the workshop; or resulting organizational policy might not lead to
implementation; or resulting policy might not reach those it would be intended to protect (6).
d) As a donor-led initiative, the results might not be sustainable (2).
In one case, it was also suggested that most of the organizations represented at the workshop might have
already found their own ways to respond to internal need (formal or informal), so the workshop itself
might just be a duplication of work that had already been done (1).
Various concerns were expressed about how NGOs would be able to leverage adequate resources (e.g.
funds for ARV, services, competency) to deliver on such a policy, especially in the Indian context where
even basic health care is not a given (4). For an organization not currently working in HIV/AIDS, the
concern related to adequate internal resources to create and sustain such a policy while also continuing to
deliver on existing programs (1).
It was questioned whether there would be adequate organizational commitment to address the issue
holistically or whether organizations would stop at HIV/AIDS awareness and prevention (2).
Other fears related to stigma and discrimination. Creating a 1workplace
* *
policy could result in greater
stigma/discrimination either of HIV+ individuals or of the organization itself, Concern was also
expressed about how to deal with stigma in the workplace (7).
The facilitator broadly categorized the concerns raised under the following questions:
• Whose agenda is this and how does it fit in with the work we do?
• Is the time enough?
• Will something concrete come out of this?
• Will we have resources to follow-up on what we decide?
B.
The Impact of HIV/Aids
This session focused on the ripple effect of HIV as it impacts an individual in the various domains of her /
his life, immediate environment (understood as family and friends), and larger circles (with particular
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emphasis on the workplace for the purposes of this workshop). A fictitious case study (see below) was
used to anchor initial group brainstorming.
It was noted that the issues and challenges were different where a positive person joins an organization on
the one hand, and where a person discovers s/he is positive while already working for an organization on
the other hand. In most cases, the individual and organization find it much harder to deal with this new
dynamic where the individual was already part of the workplace community.
In the larger context, it was acknowledged that HIV was “amidst us now,” that it was affecting the
organizations present, and that HFV had definite implications on work and workplace situations.
Simultaneously, there had been suggestions that HIV might not require very specialized or different policy
treatment if there was a culture of acceptance and mainstreaming. Now the issue was how to respond to
HIV and the challenges that would arise.
Case Study Basappa is 38 years old, married and has three children: a twelve-year old son, a ten-year old daughter, and a
two-year old son. He is a graduate, thefirst one in hisfamily. He lives with his mother, three younger brothers,
and a sister.
He works with Sankalp, a development NGO working largely in the area of livelihoods, co-operatives, and
health. Basappa is a team leader and trainer in the health team. He leads a team of 7 community organizers
and animators, and he has been involved in HIV awareness work in the community and has been the lead person
doing orientation and sensitization of SHG groups in the community on the basics of HIV/AIDS. He has been
with Sankalpfor the past 8 years.
He was recently diagnosed with TB and asked to undergo an HIV test. He tested positive.
Discuss the impact of this on him personally at a psychological, social, and economic level and also on his work
and his organization.
Time not to exceed 15 minutes
A number of pertinent issues were raised in the course of group discussion around the case study. The
trauma and difficulty of disclosure for an individual working in HIV awareness and yet not aware of
becoming infected was noted by all. In one instance, it was suggested that certain aspects of activist and
NGO culture or lifestyle might have also resulted in greater risk behavior among development workers.
On the one hand, it was suggested that the individual’s credibility as a trainer and/or the organization’s
credibility in the realm of HIV prevention might be compromised if his status were disclosed. The
families of other staff members might react negatively and might not want their own family member to
continue at the development organization in question.
5
It was also suggested that the individual’s particular situation - if he were willing to share his story - could
prove an important opportunity for the organization to make HIV visible internally and externally. It
was weighed whether open discussion of Basappa’s story would prove disruptive to him and the
organization, or whether it would help to foster a positive and healthy work environment and greater
solidarity within the organization and/or with the community.
Ultimately, a great deal depended on “organizational climate”. The individual might realize that disclosure
offered the best means of coping with his HIV+ status, but without adequate support, his “potential to
become a champion” would remain just that.
It was noted that creating a supportive environment does not have to translate into massive financial
implications for the organization. A great deal could potentially be done using existing organizational
resources.
The Prayas Experience -
“In big industry, even -where there may be money for treatment, [individuals] don't disclose because they are
afraid ofstigma. ”
Most HIV4- individuals go through an initial response of shock as they try to cope with accepting their status as
positive people and as they face disclosing their status at home, at work, or among friends. In an organization
like Prayas, an individual like Basappa would know in advance that he wouldn’t be thrown out and wouldn’t
face discrimination. There might not be money for ARV treatment, but people living with HIV had access to
the same advantages as pregnant women or people who were sick.
Other issues were raised that revolved around the responsibility a voluntary organization had to ensure
workers became part of a larger net of healthcare. Should workplace policy on HIV start with providing
new staff an opportunity for a general medical check-up along with voluntary HFV counseling and testing?
What HIV-specific measures might be required to retain valued and experienced staff in the long term?
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HIV and AIDS Policies at the Workplace —
Christy Abraham, ActionAid International India
(See Appendix 3)
This presentation noted the presence of HIV in the general community - primarily touching the younger generation
most active in the workforce, with increasing numbers of widows and orphans. The internal and external impact of
HIV on development organizations was growing as HIV emerged locally, as national and international policy as well
as AIDS activists created pressure for responses, and as a range of financial, technical, and human resources became
more available.
Development organizations in India were faced with many opportunities and also challenges as each chose to
respond in its own way. An initial checklist was suggested of elements that could help with organizational
governance related to HIV, particularly stressing the importance of Behavior Change Communication (BCC),
supporting the concept of Greater Involvement of People living with HIV/AIDS (GIPA), fostering an equity and
rights-based environment, as well as creating a culture of inclusiveness.
As organizational leaders, the group might not be entirely convinced of the need to have a policy or convinced that
responsibility for creating a policy lay with the organization. As the presenter stated, “We are all small or started
small. The move from small to big is not taken that seriously, [nor] the need to write down policies. The feeling is
that policy is for others. We are very friendly. There is this culture of not putting things [down on paper].”
Certainly resources would be an issue, and policy on HIV “definitely cannot be considered as simple as pregnancy or
diabetes”, but the real issue might be that “somewhere in our minds we have this idea it will not happen to us.”
The presentation concluded with the suggestion that, “unless we personalize it and think - if that health worker
[referring to Basappa in the fictitious case study] were me - change will be difficult.”
In the course of discussion and responses to the presentation, the issue of larger contexts was raised, with
one participant reminding the group that the epidemic was becoming feminized. “We do talk about the
silence around sexuality [now],” she said. “We talk about violence and sexual values. But can we put the
whole thing together to say that this is our opportunity for the engendering of our workplace policies?
(...) Each of us is in such a rush to do what we are doing that we are not seeing the links.”
Another participant raised the issue that a large percentage of the workforce could not be found in any
formal workplace. In fact, many of the workplaces represented at the workshop - (virtually all of the small
development organizations present) - bore a close resemblance to the informal sector. It was stated that
the dilemma of this workshop had been whether to only look at the workplace policy of the participant
organization, especially for small organizations working with a network of many groups or community
based organizations. The immediate scope had been limited to just the participant organizations because
of the framework of the pilot project. It was hoped that the larger networks would ultimately benefit from
the competence of the intermediate organizations, and it was thought that HIV/AIDS might provide an
opportunity to formalize this sector to a greater extent.
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Referring to a point made in the previous presentation (that Behavior Change Communication could help
foster a culture of inclusiveness within an organization), it was asked whether a widespread BCC program
was practical in India “with people who are so poor and struggling to survive.” However, the facilitator
clarified that BCC was not to be taken as a program but as a way of life that included accepting and
respecting people, questioning and redefining social norms.
c.
Organizational Coping Strategies
During this session, different organizational experiences with internal and external mainstreaming of
HIV/Aids and the strategies employed were presented. At NESA, HIV/AIDS had been externally
mainstreamed into larger program agendas but had not yet resulted in internal mainstreaming. At SLAAP,
an Aids specific organization, a workplace policy was already in place.
New Entityfor Social Action: Life with Dignity John Dalton, NESA/Arogya Agam
(See Appendix 4)
“Usually I'm a bit of a missionary about HIV. Probably I’m preaching to the converted. Something Eve just
realized over the last 2 days - even though we have trained so many, work with so many, why haven’t we got our own
workplace policy? ”
0
NESA focuses largely on rights issues among Dalits, Adivasis, women, and children and had given prominent space
to HIV/AIDS on its agenda from the start. The network had expected that its work with community would also
reach the staff. However, risk perception among staff of network partners tended to be low even though “there is no
doubt: sex is going on like anything.” During the presentation, it was acknowledged that HIV was “very much with
us, but still NESA doesn’t have a policy.”
Now the question for NESA and others present was where and how to start as well as what to expect. For NESA and
other organizations that have focused on HIV externally, it was likely that “the same difficulties we have faced
before are going to apply when you talk about HIV within the organization.” Some of the initial steps that might be
required for an internal process were listed. First would be to “check and understand our own beliefs, attitudes, and
values. A cautionary note was made about the pitfalls of both moralism and ascribing either innocence or blame to
people living with HIV. Some of the (relatively simple and inexpensive) ways an organization could develop a
culture conducive to an internal policy on HTV were mentioned. Staff required basic knowledge and understanding
of key areas related to HIV. And there must be space for people living with HIV to be heard and seen.
The presentation concluded with a response to the suggestion that a workplace policy on HIV was just another donor
agenda. The donors pushed gender and now we all believe in gender. We’ve interiorized gender, but we haven’t
interiorized HIV/AIDS. And I think it needs the donors to push it. In my belief, AIDS has been left to the AIDS
service organizations, but it should be taken up by everybody. The donors have seen what’s happening in Africa:
25% of people positive. Here they see 1%. Stop at 1%.”
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Internal HIV/AIDS Mainstreaming Indumathi Ravi Shankar, South India AIDS Action Program
(See Appendix 5)
After SIAAP was invited to make a presentation at this workshop, the staff team had met together to review the
organization’s internal policy, to reflect on their learning since the creation of SIAAP 15 years ago, and to look at
what SIAAP might recommend as best practices or strategies for managing HIV in the workplace.
The presentation described how SIAAP fostered an inclusive and empowering work environment. It spoke about
foundational beliefs and inclusive language. It described the Foundation Training provided to all staff as well as
continuous training and education to support professional growth. Community members - women in sex work
(WSW), men who have sex with men (MSM), and ‘positive people’ - are present at all different levels of the
organization as trainers, counselors, team leaders and managers. Community is further included in planning, review,
and peer financial auditing processes.
The presentation touched on some of the specific measures SIAAP had taken to make an internal HIV policy work.
For example, all staff regularly contributed to a Positive Living Fund. And when a positive person headed a group,
there was always a second-in-line who could take charge if the leader fell ill.
The assertion was made that SIAAP’s internal policy had strengthened its external approach and successes. Finally,
SIAAP faced (and will continue to face) any number of internal and external challenges, but the organization had
been able to meet these challenges head on largely because of the special culture it had fostered.
It was noted how a combination of formal and informal structures had created a feeling of safety within
SIAAP. ‘Community’ here meant a mixed group of WSW, MSM, and positive people. This community
had been involved from the beginning and became part of the organization. In this way, SIAAP itself was
a community-owned and community-led response to HIV/AIDS, with its own culture of acceptance.
D.
Stigma and Discrimination
In the transition to the next session, it was noted that a workplace policy in any mixed group - such as
groups that included people who were HIV positive and people who were not - would need to address the
issue of differing privileges. Participants were requested to think about any instance of discrimination
they had faced - ethnic, racial, caste, class, gender, or other - and their immediate emotional response. A
range of predominantly negative responses were called out: helplessness, humiliation, self-blame, “why
me?”, rejection, hurt, sadness, anger, hatred, and defiance. It was pointed out that this exercise might be
the closest participants would come to the feelings of stigma and discrimination experienced by a positive
person. This session, while focusing on the particular severity and trauma of HIV related stigma and
discrimination, ultimately opened out to a vision of a larger opportunity to counter workplace
discrimination of all kinds.
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To begin, a closer look was taken at the basis of stigma and discrimination (See Annexure A: Participants
Presentations-Sanghamitra Iyengar, Samraksha). The process of attributing negative values to a group in
order to legitimize and retain power inequalities between ‘us’ and ‘them’ was broken down. It was
recalled how, ‘as ye sow, so shall ye reap’ was a common refrain in the early days of HIV. Understanding
stigma and discrimination as power play helped in understanding “our responses and how we need to
respond in a much better way. It was also pointed out that HIV stigma was usually discussed as resulting
only from lack of knowledge, from fear, and from its being viewed as a terminal condition. Often, there
was not enough talk about taboos and morality issues.
There were also several different types of stigma. Positive people sometimes blamed themselves for their
own ‘wrong deeds” (internal stigma). Or blame might be transferred onto the family who hadn’t taught the
person properly, the regular partner who hadn’t provided adequate sexual satisfaction, or the employer
who hadn’t created a work environment that ensured protection (secondary stigma). Finally, there was the
possibility of stigma from one’s own group - be that MSM or WSW or other (double stigma).
While speaking about the roots and forms of stigma, the facilitator emphasized the need to create spaces
where people could talk openly about issues and about the values that underlie stigma. Just having
the space to talk did away with a whole stigmatizing atmosphere of secrecy and helped decrease curiosity
about others’ HIV status: “It’s alright if someone wants to say very negative things. Unless they say it
and discuss it, the acceptance will never get internalized. A lot of time, we want everyone to feel the right
or politically correct way. But unless there is an opportunity for a person to say, ‘no, I think this is
wrong,’ ... the person will just speak jargon. [S/he will] say the right things but continue to use a separate
cup from [an HIV positive person].”
Sharing Experiences of Workplace Related Stigma and Discrimination
Asha Ramaiah,
Positive Women’s Network - PWN;
Karnataka Network of Positive People - KNP+;
Indian Network of Positive People - 1NP+
In one instance, an individual had called KNP+ and started crying over the phone. He had been working for two
years at an Indian industrial giant, and his manager would not permit adequate leave for him to seek the medical help
he required. He had not disclosed his HIV+ status either at work or at home. Only his doctor knew he was HIV+.
He needed to start on ART as his CD4 count was very low, but was both very worried about the cost and very scared
of anyone finding out that he was HIV+. KNP+ interacted with both the individual’s doctor and the employer. The
company rejected support for ART but did not try to terminate the individual. The medical doctor now finds other
reasons to justify the individual’s medical leave requirements.
In another instance, a KSRTC conductor was removed from his post because he was not reporting on time and was
drowsy on the job. He was told that others were afraid to work with him. This person was taking TB treatment, and
this was causing regular drowsiness. When KNP+ approached KSRTC, the network was told that the individual had
a behavioural problem. But after the KNP+ intervention, KSRTC called the person back, paid his medical bills,
assigned him a post as a driver at Chitradurga, and trained him as a driver. Of course, the posting made no sense
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given his problem with drowsiness. Furthermore, his Chitradurga supervisor would only give him night duty. The
person finally said he preferred to leave KSRTC and find work as a coolie even though working with KSRTC meant
job and salary security. Now he was working as a salesperson.
One positive person had been working as a staff nurse at a private hospital. When the hospital learned she was
HIV+, she was told the hospital could not keep her on as she might transmit the infection to someone else while
performing her nursing duties. Dr. K.S. Satish (Wockhardt Hospital) learned of the case through his work with HIV
clinics and hired the nurse to work at his private clinic. After interactions with Dr. Satish and others, the hospital re
hired the nurse but has not allowed her to take up her previous nursing duties. The hospital provided medical
reimbursement for her care costs and a salary increase, but the nurse now distributes medication in the medical stores
department.
KNP+ also received requests to conduct sensitization programs at companies. At one Mysore-based
company, KNP+ suddenly learned (two days into a four-day program) that the company planned to send
all of its employees for HIV testing. The KNP+ program facilitators tried to discuss the issue with the company
management and the union leader. But the testing went forward as planned on the last day without individual pre
test counseling. Two staff members tested positive and contacted KNP+ on their own. They were not terminated,
but were removed from the laboratory where they had been previously posted. The company has provided medical
benefits and has indicated readiness to support ART at least partially should that be required. Taking support from
KNP+, one of the positive staff members has now disclosed his HIV+ status to his wife and larger family.
KNP+ still faced many dilemmas in evolving strategies for workplace advocacy. For example, how could KNP+
reach their discrimination dispelling programs and efforts to the individual employers of predominantly female
household helpers (‘maid servants’, cooks, ‘ayahs’).
Picking up on the mention of informal workplaces in the previous presentation, the facilitator expanded
the point a step further: “For many women, home is the workplace. And there is a lot of discrimination
within the home as well. [One person living with HIV once said to me,] ‘That my mother should be afraid
of touching me has hurt me more than anything else.’ (...) In the workplace, we can have a policy, but
we also need a [positive] culture.” Without the right environment, even the best of policies will fail.
It was reiterated that visibly “practicing what you preach” as well as real discussion and communication
were essential to change behavior and discrimination. One participant said he had asked people living
with HIV what their reaction would have been if they were not positive and learned that a colleague was.
If the reaction was discriminatory, then this was the point “to be discussed and not to be disgusted about.”
Sharing Experiences —
A positive person had been working as a cook for four families until these families learned that she was HIV+
and dismissed her. The doctor at the HIV clinic where this individual was a client hired her to cook for him and
his family. The community itself saw that he and his family ate the food cooked by this person every day.
Subsequently, three of the four families where she had been working hired her back, and the fourth family
contributes to her medical treatment costs.
11
In response to a question about alternative HIV therapies based in other Indian medical systems, the
positive networks’ stand on HIV treatment was noted: “Worldwide, ARV is the practice.” The positive
networks would continue to follow WHO guidelines in their recommendations for ARV treatment until
there was solid, internationally accepted proof that other therapies could be as effective. However, it was
also noted that, “in Bangalore, some people prefer cold water and some prefer hot water”. Positive
policies and environments were required to enable positive people to make their own choices.
I think the real issue is how to take this as an opportunity. Tomorrow, if we discover a medicine to cure
HIV/AIDS, no one will talk about [HIV] anymore. So let’s look at this as a way to address all
discriminations. ”
E.
Mainstreaming HIV/Aids at the Workplace
The National AIDS Control policy for the next 5 years will focus heavily on mainstreaming in every
single sector — government, corporate, or other. The question is how civil society organizations could
influence that if they hadn’t experienced the challenges themselves. The example was cited of a group
of development workers who had visited another NGO’s ‘Well Woman Clinic’ and then requested
individual gynecological exams and HIV counseling and testing. Afterwards the visiting group explained
that they needed to understand the difficulties for themselves before they could promote a similar concept
to the community where they worked.
And even the most generous policy would fail if it were not backed by a culture of real acceptance and
inclusiveness. The facilitator cited the example of the diamond mining giant DeBeers in Botswana where
a free ART policy had been instituted and widely announced. General HIV prevalence was around 28%
and nearly 40% among the miners. People had multiple opportunistic infections and were dying. Yet only
about 2% of the miners came forward as the rest feared the company would discriminate against them or
fire them.
In the end, attention was redirected to the previously mentioned concept of ‘critical mass’. The question
was how to build up the critical mass required in order to respond to this issue - and what were the social
and political implications.
ILO Code ofPractice Edwina Pereira, International Services Association India
(See Appendix 7)
“Maybe HIV is an opportunity to live more positively, to look inside and reflect on ... our practices, on the way we
discriminate against different groups. Maybe this is an opportunity to talk sex and sexuality.... ”
“Losing skilled staff in an NGO set-up is very tough. It doesn’t make sense to lose them to HIV.
12
The presentation suggested it was a very logical concept to think of preparing now for a time when HIV would be
clearly present in the workplace — if it were not already so. In 1991, school headmistresses had laughed when INSA
approached them about initiating policies for admitting HIV+ children, talking to parents, and so on. But such
policies had now become very relevant.
It was further noted that groups including YRG Care and Freedom Foundation had come out with sustainable models
for cost recovery related to HIV care and support.
The key principles outlined in the ILO guidelines were reviewed and a basic checklist for moving forward with a
workplace policy was, offered. As a final word of caution, it was noted that drafting a policy and living it are two
very different things.
HIV/AIDS & the Workplace: “The Bangalore Story”
Shalini Gambhir, Bangalore Medical Services Trust and Research Institute
(See Appendix 8)
BMST has been involved with HIV interventions for the corporate sector in Bangalore over the last 13 to 14 years.
While many companies were willing to conduct HIV/AIDS awareness programs, it was clear that stigma remained
very high. Different types of industry also demonstrated differing levels of risk perception. In the high-tech and IT
industries where employees were ‘highly educated’ and skilled, the assumption was that there was no HIV risk; in
government factories, there was a perception of low risk; and the trucking and other male-dominated industries now
viewed themselves as high risk. But even those companies interested in HIV awareness programs were not truly
interested in taking responsibility for internal awareness (through, for example, a peer educator approach) and
certainly did not want to talk about a formal HIV workplace policy, as HIV didn’t yet seem to affect their ‘bottom
line’. The CH sub-committee on Corporate Social Responsibility had indicated interest and a few pro-active
companies were beginning to talk more seriously about HIV. Given that most companies had not even instituted the
legally required policy on sexual harassment, there was still a long way to go before even basic issues such as
voluntary HIV testing and confidentiality were addressed.
A partner working in an Orissa ‘tribal belt’ asked how to make this workshop initiative relevant in the
context of a highly mobile workforce made up primarily of daily wage laborers. It was proposed that part
of this group’s networking could include larger scale advocacy. For instance, NGOs needed to push the
government harder to get HIV mainstreamed into the government health system and structures.
It was suggested that all of the organizations present were probably agreed on the need for some form of
workplace policy. Now the question was how many organizations already had a policy and what
difficulties they had encountered in developing and implementing it. Other practical issues included
formulating policy so that it was understandable even to those not working in the HIV sector as well as
knowing how to adapt a guideline to create policies relevant to each organization’s specific context.
One organization with a policy on HIV noted that it had been difficult for unaffected staff with other
issues and medical conditions to understand the support and attention provided for HIV: “It took us a long
while to understand that HIV/Aids is unlike any other disease. When you talk about disease, people in the
workplace think about medical benefits. The reason to put in a policy like this is because there is a need
13
to look at more than medical expenses - other care and support requirements, livelihood requirements, and
more.”
Another organization clarified that HIV/Aids could not be treated as medically different, for then a policy
would likely become discriminatory. Instead, HIV required a specific workplace policy because of its
larger social impact.
F.
Stop Aids Now! and the Workplace Initiative
The afternoon session opened with a more in-depth look at SAN!’s initiative on Managing HIV/AIDS in
the workplace (See Annexures A - Participants Presentations- Yvette Fleming, SAN!). HIV/AIDS was
not only a health issue, but a development issue. Donor agencies could no longer support capacity
building, for example, without looking at the impact of HIV/AIDS on the capacity building outcome. The
lack of dialogue on HIV between the donor and counterpart organizations had been mentioned earlier.
The SAN! Policy Officer stated, “This is a difficult subject...for your donors internally. (...) We are all
starting a process.”
The question now was how to think together and then move the thinking into action. It was emphasized
that the process was in no way mandatory. Each partner organization would take the process forward as
they “saw fit.” HIV workplace policy was functionally defined, and it was noted that the initiative would
place particular emphasis on the need for stigma and discrimination reduction measures as well as access
to care within comprehensive workplace policies. The concept of good donorship was brought up, and it
was explained that the Good Donorship guidelines - once finalized - were meant to help break the silence
around HIV/AIDS and inform both program officers and partner organizations on the donor’s position.
The framework for this initiative had begun to take a certain shape in Uganda. In Uganda (as in India),
local organizations with relevant expertise could be accessed as resource bodies. It was mentioned that
several medical insurance companies had indicated willingness and interest to discuss coverage to support
the initiative in Uganda. The same would be investigated in India as a possible sustainable solution for
access to care and treatment.
As an aside, it was noted that the Indian civil society group seemed to share a similar perception of risk as
in high-prevalence Uganda.
Now a framework would need to emerge for taking the initiative forward in India to evolve policies and
see them through to implementation.
Questions were raised about whether it would be possible to redefine the workplace to include the larger
unorganized sector, about how other people who were not positive would react, and about other people
who might have other workplace issues that needed to be addressed. It was suggested that an HIV policy
might need to be part of a larger package of workplace policies. It was noted that SAN! had spoken about
14
financial and other support structures. But could an organization access the same kind of support to
ensure, for example, wheelchair accessibility for staff with disabilities? These questions all came back to
the issue of open discussion and dialogue between donors and partner organizations, a fundamental issue
raised by SAN! itself through this workplace initiative.
“HIV/AIDS is critical. I have some questions as to this focus on the workplace, and your example of the insurance
company reinforced [this]. Without questioning the principles involved and the need, this [initiative] seems to come
across as an extension of the larger globalization - privatization - industrialization of NGOs. As part of the
rationale document, you mentioned that there was no dialogue. When you talk about participative processes, usually
that starts with setting the agenda. Here [is] an agenda, and we are ... being asked to take itforward
Ifwe were actually looking at workplace issues, then we would [not] have ... started, with HIV. But nowhere do I get
the feel that this could broaden into a larger human and institutional policy development issue. If we were to take
leadership and to say that [this initiative] shouldn ’t be restricted to HIV, then would that be supported?
While we have all touched upon it, we [don’t] tend to see ourselves [as] an institution. [This is] not always a good
thing when staff rights and benefits get overlooked andfall into the cracks. Most of us are driven by what we can do
for the larger community. This framework doesn’t give us the vision to say how [to] expand this learning to the
larger community. ”
In response to a comment about internal and external ipainstreaming, it was suggested that it might not be
so easy to separate one from the other, no matter which one chose to look at first. It was further put forth
that discussion of internal versus external mainstreaming was only an operational issue. With a bill on
HIV already pending in parliament, it would be more valuable to look at where the synergy for social
change around this issue might lie: “We are all citizens of this country. Most of the NGOs [present] are
members of larger social movements and [interact in various ways with government]. Whatever we do
within our organizations, these are not private spaces. [These spaces] have relevance to public rights.
Obligations and responsibilities are very high. The wider world you try to transform is brought in when
you talk about workplace policy. We are talking of wider visions..
G.
Formulating a Framework and a Process
The immediate agenda came back to what the organizations present would decide to take forward as a
potential network of approximately 50 organizations: “What is our own need from the field, our own
context in which we are going to take this and shape it?” Groups in Ethiopia and Uganda had started to
respond to this initiative in a certain way. Would this group like to take HIV as a triggering factor but
expand the discussion of workplace policies beyond HIV? Would the group choose to function as a
network of organizations? How should such a network proceed? What would be the implications? What
resources would already be available? This was the first time any sort of guideline for good donorship
had been mentioned. Perhaps this was also an opportunity to take the idea of the Good Donorship
Guidelines and expand that beyond HIV/AIDS as well.
15
Breaking down into small groups for discussion, all seemed to agree that each organization would have
to work through its own specific process with staff and others to define a policy catering to
organizational/regional/group-specific needs. Organizational preparedness was key, and the
expression of a supportive environment would ultimately have to be integrated across programs, policy,
and partnerships. But some organizations might not adopt a formal written policy. Some might
incorporate policy on HIV into a larger social welfare policy, while others might keep it separate.
One group suggested that it might be difficult to involve staff in only one specific workplace policy, “as
people will say what about this and what about that.” This group proposed that staff could be offered the
choice of HIV (non-negotiable) plus two other policies. First, organizations should commit to fulfilling
existing statutory requirements (such as a policy on sexual harassment), and then move on from there to
other specific felt needs. Several participants reminded the larger group that once the legislation on HFV
was passed, there would also be some statutory requirements related to HFV. The new National AIDS
Control Plan would also put emphasis on workplace policy.
For this initiative, each individual organization would further need to define the extent of its
‘workplace’. In general, the workplace could be understood as all staff and ancillary staff over which the
organization had institutional control. But some organizations might choose to include secondary
workplaces such as CBOs. While it would not be possible to impose the same policies on a secondary
group, it might be important to lobby for similar policy and practices in the secondary workplace.
But there was also a risk that the community would ask whether this was an NGO initiative, “just as we
are asking is this a donor initiative.”
A smaller committee would need to formulate guidelines perhaps based on key elements from the
ILO/WHO code and perhaps incorporating inputs from a wider group of resource persons including
medical, legal, NGO, and government representatives. One participant suggested that, in contrast to the
African context, it would still be possible to focus largely on prevention issues in India. Perhaps certain
‘non-negotiables’ should be defined using the ILO Code to address HIV prevention through the
workplace. It was noted that it would be helpful to list and share available resources, such as the draft
HIV legislation drawn up by the Lawyers Collective or existing guidelines for ethical practice related to
HIV.
As a process evolved, this itself would define the support required from donors. One group took the logic
further and suggested that each organization should then seek a commitment from all its donors that
the donors would provide global support for these policies.
A pilot scheme for sustainability was mentioned. Staff could contribute, for example, to a fund held by
an institutional trust.
Mechanisms for monitoring and enforcement that went beyond NGOs would also be required. There was
discussion of lobbying government for statutory backing, a suggestion that this group might put forth a
16
draft to define national policy on the subject, and questions about how to pressurize local and state
governments to deliver on basic health rights or implement current HIV policies.
Finally, it was suggested that if the group was going to have a network on HIV, it should go beyond
workplace policy as “it would be a waste to come together only on this.”
All present indicated their interest in moving forward together on an initiative related to managing
HIV in the workplace. It was also agreed that a core group was required to look concretely at a process
and recommendations for proceeding. It was suggested that with such a small group of NGOs, it was not
advisable to form state-level groups, for then the state representatives would in effect “take on the onus”
of representing other organizations within the state. In order to represent just “the partnership here”,
choosing participants from different types of organizations might prove more appropriate. As participants
had already broken down into state-wise groups, each state therefore agreed on several representatives
from different types of organizations. In this way, an ad hoc committee of 15 organizations was formed.
The committee was requested to continue in order to look at defining its roles and responsibilities, a basic
timeline, and basic guidelines for how a networked initiative could proceed. Two or three members of
this executive committee would need to take the lead as a smaller working group to develop a rough
action plan or draft recommendations that each organization would choose to sign on to or not.
H.
Closing
o
To wrap up, participants were asked whether their initial expectations had been met and whether they had
any final comments. A participant from Orissa suggested that a state-level workshop was required there.
Another mentioned that he had already attended two similar workshops initiated by Christian Aid and
Novib, but there had been no subsequent follow-up. He sincerely hoped that this workshop would lead to
an active process. Still another noted that his organization had no background in HIV, but was a
membership organization with a very sizeable reach. He was interested to see what this initiative could
mean for the organization and its members.
Over the course of the day, serious concerns about the human condition had been raised by the
participants. It was noted that every one of the participants’ observations had bom witness to their
experiences and knowledge on the subject. Speaking of a “sustainability curve”, it was reiterated that
movements must belong to the people themselves - a point made in different ways by different
participants throughout the day. Each organization would now have to go back to its own staff and begin
or continue a discussion with them.
“In our experience, there are open doors, open windows you can jump in, and closed doors you have to
keep knocking on before you can get in. "
17
The facilitator indicated that when she first saw the participant list, she was concerned whether such a
diverse group of organizations would be able to come together to look at this one issue, but the different
views and approaches had enriched each other.
The SAN! Policy Officer expressed her surprise at the way the group had been able to bring together the
complexity of HIV/AIDS, especially in the complex Indian context. She looked forward to seeing how
the process would move forward in India and hoped the group would remain involved in evaluating the
Good Donorship guidelines and monitoring good donorship practices.
A Program Officer from the Hivos India Regional Office concluded the day by thanking the partner
organization representatives and the resource persons for their participation in a unique workshop
conducted on behalf of the 4 Dutch Co-Financing Agencies and the Aids Fund.
o
18
LIST OF PARTICIPANTS
Stop Aids Now! (SAN!)
Yvette Fleming
STOP AIDS NOW!
Keizersgracht 390
1016 GB Amsterdam
Ph. No. 020 - 528 78 2800 31 20 6262699
Fax. No. 020 - 627 52 21
Email: YFleming@stopaidsnow.nl
Website: www.STOPAIDSNOW.nl
NOVIB
John Dalton
NESA/Arogya Agam
Aundipatty 625 512
Theni District
Ph. No. 04546244311/9842115449
Email: john@arogvaagam.org
Jacob Dharmaraj
PREPARE
No.4, Sathalvar Street,
Mugappair West
Chennai - 600 037
Ph. No. 91-44-26244211 / 26357854
Fax. No. 91-44-26357854
Email: prepare@vsnl.com
A. Kalamani
Director
Centre for World Solidarity
12-13-438, Street No.l, Tamaka
Secunderabad - 500 017
Ph. No. 040 27007906/27018257/27014300
Fax. No. 040 27005243
Email: kalamani@cwsy.org
Vinay Kulkami
Trustee and co-ordinator Health Group for HIV/AIDS Activities
Prayas (Initiatives in Health, Energy, Learning and Parenthood) Pune
Athawle Comer, Karve Road
Lakadi Bridge Comer,
Deccan Gymkhana
Pune 411 004
Ph. No. 020-2544 1230 or 2542 0337/98223 00532
Email: prayashealth@vsnLnet
19
Maya Mascarenhas
Programme Coordinator HIV AIDS
MYRADA
2 Service Road, Domlur Layout
Bangalore 560 071
Ph. No. 91-80-2535 3166/ 2535 2028
Fax. No. 91-80-2535 0982
Email: MYRADA@vsnl.com
Vidya Nayak
Deputy Director
NAGARIKA SEVA TRUST (R.)
Guruvayanakere Post
Belthangady Taluk - 574 217
Dakshina Kannada District
Karnataka
Ph. No. 0.8256 - 232019/9448287053
Fax. No. 08256- 232019
Email: nstgkere@sanchamet.in
A. P. Rao
Centre for Education and Agriculture Development (CEAD)
Shastry Nagar
Nirmal - 504106
Adilabad district
Andhra Pradesh
Ph. No. 91 08734 242361/9848043341
Email: ceadrao@yahoo.com
Mohammed Rafiuddin
Director
Hyderabad Council of Human Welfare - AP
H.No. 12-2-790/56, Ayodhya Nagar Colony
Mehdipatnam
Hyderabad - 500028
Ph. No. 040-23526554, 55505827, 9246599786
Email: rafimohd07@hotmail.com
N. Samson
Director
GRAM Abhyudaya Mandali
Dharmaram 503 230
Nizamabad District
Andhra Pradesh
Ph. No. 08461 245035/24200/9848358419
Fax. No. 08461 245028
Email: gramsamson@gmail.com
20
Dr. G. J. Suresh
Dhan Foundation
72/1 A, Shanthi Nilaya
Opp. S.M. Kalyan Mantapa
Jaraganahalli
Kanakapura Main Road
J.P. Nagar 6th Phase
Bangalore 560 078
Ph. No. 09986077516
D.Suryakumari
Director
Centre for People’s Forestry
12-13-445
Street 1, Tamaka
Secunderabad 500 017
Ph. No. 040-27016038; 27014494;M-9849303220
Fax. No. 040-27016038
Email: sk@cpf.in;skdasigi@redifffnail.com
Nanda Vardhan Thumaty
Secretary
Social for Integrated Development in Urban & Rural Areas (SIDUR)
316/2RT, P.S. Nagar
Vijayanagar Colony
Hyderabad 500 057
Ph. No. 040 55368110
Fax. No. 040 55368109
Email: sidur hyd@yahoo.co.in;vardhantjps@hotmail.com
CORD AID
Alphonse
Director
Don Bosco Anbu Illam
No. 25, Kulandai Street
Park Town
Chennai 600 003
Ph. No. 044 35352101/9444031098
Fax. No. 044 25356885
Email: anbuillamchennai@touchtelindia.net;anbuillamchennai@vsnl.net
Martha Farrell
Society for Participatory Research in Asia (PRIA)
42, Tughkalabad Institutional Area
New Delhi 110 042
Tel: 2995 6908, 2996 0931
Email: maitha@pria.org;ioshi@pria.or£
21
Sunil Mathew George
Technical Assistant, Community Health Cell
No. 369, Srinivasa Nilaya
Jakkasandra, 1st Block, Koramanagala
Bangalore 560 034
Ph. No. 25531518
Email: chc@sochara.org
Augustine Marottikudy
Associate Director (Programmes)
The Catholic Health Association of India
PB. No. 2126, 157/6 Staff Road
Gunrock Enclave
Secunderabad 500 009
Ph. No. 040 278448293/2848457
Fax. No. 040 27811982
Email: chai@pol.net.in
Mallela Grace Nirmala
State Convenor
Andhra Pradesh Jogini Vyavastha Vyethireka Porata Sangatana
206, 2nd Floor, Parthani Towers
Musheerabad, Golconda ‘X’ Roads
Hyderabad 500 020
Ph. No. 040 44821120
Fax. No. 040 27660729
Email: graceneela@yahoo.com
S.Sadananda
Director
IDPMS
# 440, 6th CROSS
7th Block Jayanagar West
Bangalore 560 082,
Ph. No. (080) 2676 3231 / 2676 3111
Fax. No. (080) 2676 3231
Email: idpms@vsnl.com
Asghar Ali
Executive Director
Confederation of Voluntary Associations (COVA)
# 20-4-10, Near Bus Stand,
Charminar, Hyderabad-500 002,
A.P., India,
Phone: 040-24572984
Fax: 040-24574527,
Email: cova@sanchamet.in
22
e
Ravi Raj William
Director
CCOORR (Christian Council for Rural Development and Research)
Wille Rose Hospital
Thiruninravur -- 602024
Thiruvallur District, Tamil Nadu, India
Ph. No. 0091-44-26390570 / 26340788
Fax. No. 0091-44-26390570
E mail: ccoorr@vsnl.net; ravirajwilliam@yahoo.co.in
ICCO
Ida Deva Chandrika
President
Women Health and Development (WHAD)
“Immanuel”
93, Broadway Road
Bangalore 560 051
Ph. No. 25660187/9845016819
Email: idadeva@vsnl.com
Malini B Eden
SEARCH
219/26, VI Main
IV Block, .Jayanagar
Bangalore - 560011
Ph. No. 9845593896
Email: malini eden@yahoo.com
Edwina Pereira
Program Director-training
International Services Association
INSA India
5/1 Benson Cross Road
Benson Town
Bangalore 560046
Ph. No. +9180 23536633; 23536299/9448011208 {Edwina}
Email: insaind@touchtelindia.net;dwinapereira@gmail.com
Dr. D. Manti
Centre for Rural Development
Vikaspuri
Hyderabad Road
Guntur 522 004
Ph. No. 0863-2354622
Email: cenrudev@sanchamet. in
23
HIVOS
B.K. Barlaya
BIRDS
Naganur 591319
Gokak Taluk
Belgaum District
Karnataka
Ph. No. 0831-384678, 388622
Fax. No. 0831 -324435
Email: birds 1 @sanGhamet.in
Basavaraju
Mahatma Gandhi Rural Development Trust (MGRDSCT)
D.No.B/6/18, ’Sharada’
1st Main, KHB Office Road
Rajendra Nagar
Shimoga 577201
Karnataka
Ph. No. 08182-220867/227441
Email: kcbmgrdsct@yahoo.co.in
Amiya Bhusan Biswal
Utkal Sevak Samaj (USS)
Plot No. 191, Mahanadivihar
PO - Nayabazar
Cuttack 753 004, Orissa
Ph. No. 0671 -444984
Fax. No. 0671 -443821
Email: uss89vol@yahoo.co.uk
Reena Fernandes
Deputy Director
Hivos India Regional Office
Flat. No. 402, Eden Park
No. 20, Vittal Mallya Road
Bangalore 560 001
Ph. No. 080 2221014
Fax. No. 080 22270367
Email: r. femandes@hivos-india.org
Bishwadeep Ghose
Programme Officer
Sustainable Production & HIV/AIDS
Hivos India Regional Office
Flat. No. 402, Eden Park
No. 20, Vittal Mallya Road
Bangalore 560 001
Ph. No. 080 2221014
Fax. No. 080 22270367
Email: b.ghose@hivos-india.org
24
John Pinheiro
(Project and Training Co-ordinator)
Positive People
Maithili Apts, St Inez
Panjim
Goa
Ph. No. 0832 2431827 2424396/9822176472
Email: ppeople@sancharnet.in
T. Pradeep
SAMUHA
No. 1583, 17th Main
J P Nagar II Phase
Bangalore 560 078
Tel: 080 - 26492361 up to 63
E-mail: samuha@samuha.org
Shobha Raghuram
Director
Hivos India Regional Office
Flat. No. 402, Eden Park
No. 20, Vittal Mallya Road
Bangalore 560 001
Ph. No. 080 2221014
Fax. No. 080 22270367
Email: s.raghuram@hivos-india.org
Sanjaya Satapathy
Coordinator
South Orissa Voluntary Action (SOVA)
AT. Janiguda
POZ Dist. Koraput
Koraput 764020, Orissa
Ph. No. 06852 - 250194, 250718
Email: sovakpt@sanchamet.in
Indumathi Ravi Shankar
SIAAP
No.8/11, Jeevanantham Street
Lakshmipuram, Thiruvanmiyur
Chennai - 600 041
Ph. No. 044-2452 2285/044-2452 3301
Fax. No. 044-2452 4215
Email: siaap@satyam.net.in;siaap@eth.net
25
Durai Singam
FEDCOT
2/84, Melachatram Street
Paramakudi - 623 707
Ramanathapuram District, Tamil Nadu
Ph. No. 04564-224705
Email: fedcotdurai@yahoo.com
Sebati Singh
Ideal Development Agency (IDA)
At: Bonajod
Po: Padmapur, Dist: Keonjhar 758013
Orissa
Ph. No. 06766-231243
Fax. No. 06766-231544
Email: idealdev@yahoo.co.in
Elizabeth Vallikad
SJNAHS, Dept, of Obstetrics & Gynaecology
St. John's Medical College Hospital
Bangalore 560034, Karnataka
Tel: 080-25530724/ proj.off.22065271
Fax: 25530070
Email: emv2@vsnl.net
o
Reginald Watts
Sangama
Flat 13, III Floor, Royal Park Apartments
(Adjacent to Back Entrance of Hotel Harsha, Shivaji Nagar)
34, Park Road, Tasker Town
Bangalore - 560 051
Ph. No. 22868680/ 22868121
Mobile: 9880223460
Email: sangama@sangamaonline.org; sangama@vsnl.net
Resource Persons
Christy Abraham
ActionAid India
3, Rest House Road
Bangalore - 560001
Ph: 0091-80-5586682/5586583
Fax: 0091-80-5586284
Email: christya@actionaidindia.org
26
Vinay Chandran
Executive Director
Swabhava Trust
54 Nanjappa Road, Shanthinagar,
Bangalore - 560027
Phone: 080-2223 0959
Mobile: 0 98441 81294
Office email: swabhavatrust@yahoo.co.in
Personal email: vinu228@yahoo.com
Shalini Gambhir Bangalore Medical Services Trust
New Thippasandra Main Road
HAL III Stage
Bangalore
Ph. No. 25287903/25283486
Email: aap@bangaloremedical.org
Joshi
Caritas India Bangalore Regional Office
No. 46, 1st Cross
Viveknagar, Maruthi Sevanagar Post
Bangalore 560 033
Ph. No. 25460866
Email: cibang@vsnl.com
Deepa Kannan
Director
Samata Health Study
No. 42, 1st Floor, Muniga Layout
Maruthiseva Nagar
Bangalore 560 033
Ph. No. 25803998/9845621108
Email, samatahealth@gmail.com
Revathi Narayanan
No. 903, 2 K Cross
9th Main, HRBR 1st Block, Kalyannagar
Bangalore 560 043
Ph. No. 23517241/7835
Mobile: 9342572915
Prabhavathy
Deputy Director (Training)
Karnataka State AIDS Prevention Society
No. 4/13-1, Crescent Road, High Grounds
Bangalore 560 001
Ph. No. 22201436/22201439
Fax. No. 22201435
Email: ksaps@bgl.vsnl.net.in
27
Asha Ramaiah
KNP+
113, 1st Floor
Above New Janatha Stores
15th Cross, Sth Main Road
Wilson Garden
Bangalore 560 030
Ph. No. 22120410
Email: ashainpplus@yahoo.com;knpplus@vsnl.net
Vidyuth .K.S
Lawyers Collective HIV/AIDS Unit
1 st Floor, No. 4A, MAH Road, Off Park Road
Tasker Town, Shivajinagar
Bangalore 560051
Tel: 080-51239130/1
Fax: 080-51239289
Email: aidslaw2@lawyerscollective.org
Meera Pillai
203, Mayflower
200 Defence Colony
Ilnd Main, 4th Cross
Bangalore 560 038
Ph. No. 25283841
Email: mpillai65@yahoo.com
0
Facilitator
Ms. Sanghamitra Iyengar
Samraksha
No 11, Bull Temple Road
A Cross, 6th Main Road
Chamarajpet
Bangalore 560 018
Ph. No. 26604563/9448477426
Email: samraksha@vsnl.net.in/si@samraksha.org
Rapporteur
Gita Srinivasan
1416 12th B Cross, 6th Main
Mahalaxmipuram
West of Chord Road, 2nd Stage
Bangalore 560 086
Ph. No. +91-2359-0339
Email: gita_s@yahoo.com
28
WORKSHOP BACKGROUND MATERIALS
date
ref.
sub
: 24 August 2005
: bg\1112\05
: Workshop on Managing HIV/AIDS in the Workplace.
Dear Friends,
Through this letter we wish to inform you about a new initiative of Hivos with its collaboration with Stop
Aids Now! (SAN!) and its partners. Hivos has been working closely with SAN! to support several
partners that are active in the fight against HIV/AIDS. This new initiative relates to developing policies on
‘Managing HIV/ AIDS in the workplace’. More information regarding SAN! and the initiative is available
in the attached folder.
As a first step in this the initiative a workshop is being organized in Bangalore on the 22nd of November
05. Attached you will find two documents that explain this initiative:
Folder from STOP AIDS NOW! explaining the initiative
Participation form questionnaire
Hivos would like to invite you on behalf of all the Dutch STOP AIDS NOW! partners (Aidsfonds, Hivos,
ICCO, Cordaid and Novib) to take part in this initiative. Please read the documents carefully. We also
wish to inform you that the decision to take part in this initiative is entirely voluntary and should be
guided by the possible use that having such a policy within your organisation level might have for the
staffers.
We hope that you would be keen to participate in the workshop and if so please send us your confirmation
by filling in the participation form questionnaire to Ms Hemalatha at hemalatha@hivos-india.org before
15th September 05. Please see Annexure 1 which prepared by SAN for the first Uganda workshop. It will
give you a concise idea of the issues at hand.
The progannme schedule and other details would be sent to you once we receive the confirmation from
you.
Looking forward to your positive response by 15th September, 2005,
Best regards,
Dr. Shobha Raghuram
Director, Hivos India Regional Office
Email id: s.raghuram@hivos-india.org
Mr. Bishwadeep Ghose
Programme Officer, Hivos India Regional Office
Email id: b.ghose@hivos-india.org
29
Programme Schedule: Workshop “Managing HIV/AIDS in the Workplace", Bangalore, India
22nd of November, 2005
Chair/ Facilitator/ Discussion Leader day:
Agenda
| Time
Objectives
09.00- 09.30 Welcome by the
and
facilitator
introduction
of
I_______ participantsand
I 09.30 - 09.45 Expectations
fears
I 09.45-10.45
4
F acilitator/Speaker________
Shobha Raghuram, Hivos
Yvette Fleming, SAN!
Sanghamitra
Iyengar,
Samraksha________________
Exercise
where
the Sanghamitra Iyengar
expectations and fears are
expressed
on
colour
papers in a few words/ one
sentence_________
Basics on HIV/AIDS Basics on HIV/AIDS Group Discussion and Group Facilitators
linking with the impact presentation
Christy Abraham, ActionAid
of
HIV/AIDS
on
Followed by sum up and
development
presentation By Session
organisations
facilitator
Methodology
15 mins group discussion.
15 minutes sharing
15 minutes presentation
I
I 10.45-11.00
| 11.00- 11.30
Tea___________
Coping Strategies
I
I
I
111.30-12.00
I
I
I
L
12.00-12.45
- The impact felt in Presentation by one of the John Dalton, NESA
executive Indumathi
Ravi
times of HIV/AIDS participating
within an organization organisation
SIAAP
Coping strategies
developed on internal
mainstreaming
- Process and content
HIV/AIDS and the An
exercise
on
Workplace
experience of any type
of
discrimination
gender/caste/
class/
ethnic/race)
Stigma
Discrimination
o
Sanghamitra Iyengar
Yvette Fleming
and - Personal experiences Presentation Perhaps what Asha Ramaiah, PWN
from a PWHA person has been the general Sanghamitra Iyengar
- Basics on Stigma and experience
of Yvette Fleming
discrimination
at the
Discrimination
and
Stigma
toolkit workplace
one
presentation
personal experience
UNAIDS
Case
Studies of successful
programmes
30
Shankar,
12.45-13.30
13.30-14.15
14.15- 15.00
15.00- 1530
15.30-15.45
15.45- 16.30
16.30-17.00
17.00
i
Managing HIV/AIDS Why HIV/AIDS is a Presentation
Edwina Pereira, INSA
in the Workplace workplace issue
Shalini Gambhir, BMST
(ILO
Code
of
Practice)
Lunch
Information on the Presentation
of Presentation
with Presentation Stop Aids Now! |
Initiative
Managing HIV/AIDS interactive components
Yvette
Fleming
Project
in
the
Workplace
Officer
|
Initiative
I
Review
of
expectation and fears
Coffee/Tea________
Group
discussions
for
inputs
from
participants on the
general framework of
operation
Formulating
next
steps______
Closing Ceremony
with statement
Sanghamitra Iyengar
I
Interactive Discussion in Sanghamitra Iyengar
groups
Interactive Exercise
1
I
Sanghamitra Iyengar
Yvette Fleming
o
31
Ba i
I
STOP
AIDS
NOW!
EERI lUTUTIEF HI UeSFOIDS.
10$. iCtQ. MEHIS4 El IIVIB
RIVC
Folder
With this folder STOP AIDS NOW! would like to inform you and your organisation about an initiative
“Managing HIV/AIDS in the Workplace”. This initiative aims at adjusting policies and practices of
donors (like Novib, ICCO, Cordaid and HIVOS) and their development partners in the light of the
HIV/AIDS pandemic.
STOP AIDS NOW!
STOP AIDS NOW! is a partnership between five Dutch Co- funding non governmental organisations Aidsfonds, Hivos, ICCO, Memisa (Cordaid) and Novib (Oxfam) established in 2000. The mission of this
partnership is “working together towards a world without AIDS”. The objective is to increase and
improve the Dutch contribution to the global HIV/AIDS response, summarized as “more and better”.
More is understood as enhancing the level of activities of non governmental organisations (NGOs),
community based organisations (CBOs), AIDS service organisations (ASOs) and faith based
organisations (FBOs) in the South with regard to information, education, prevention, treatment and care
for people with HIV and AIDS, support for people affected by the impact of HIV and AIDS (e.g. orphans
and vulnerable children, women and elderly) and strengthening the structure and influence of civil society,
including the role of the business sector. Better is seen as improving the quality of the HIV/AIDS
activities of civil society in the South by stimulating mainstreaming, linking and learning, capacity
building and innovation.
Development Themes
In light of their understanding of the global crisis and the necessary response, the SAN! partners1 have
chosen three development themes
1. Access to treatment
2. Orphans and vulnerable children
3. Gender and HIV/AIDS. Development themes will be organized as development projects.
Their overall objective remains learning from and innovating in existing strategies and methods;
developing new strategies and methods and establishing new forms of cooperation and partnership.
1 SAN! Partners means throughout this document the donor organisations Aidsfonds, Hivos, ICCO, Memisa (Cordaid) and Novib
(Oxfam).
32
Managing HIV/AIDS in the Workplace
Within the theme Access to Treatment we have chosen “Managing HIV/AIDS in the Workplace ” as central subject.
Managing means having a comprehensive workplace policy in place, that includes prevention, care “and support
and treatment. “In place” means understood and operational within the organisation. An HIV/AIDSpolicy defines
an organization’s position and practices for preventing HIV transmission and for handling HIV infection among
staff. The policy provides guidance to managers who deal with the day-today issues and problems that arise in the
workplace. Also, the policy informs staff about their responsibilities, rights, benefits and expected behaviour on the
job.
How do we make sure that counterparts have operational workplace policies and implement programmes
for their own staff? SAN! partners discussed the above questions with representatives from the South
during a workshop held at the end of January this year and this resulted in a project initiation document.
Phase 1: Project Initiation
The project initiation document proposes a project with three sub divisions:
The first sub-project A addresses the question of good donorship: What is the responsibility of the donor
organisations that are represented in the STOP AIDS NOW! partnership given the continuously changing
circumstances in emergency and high HIV/AIDS prevalence countries? Up until now there has not been
clear and consistent support for the development and implementation of HIV/AIDS workplace policies by
counterparts2 like you. The working title of this sub-project is Good Donorship and it is currently being
elaborated.
o
Sub-project B, will have the working title Workplace Policies and Programmes. It aims at facilitating all
counterparts to develop and implement comprehensive workplace policies and programmes, starting in
two countries Uganda and India. A strategy on how to cope with stigma and discrimination in the
workplace should be part of this policy and programme. The project will support the process of
developing and implementing a workplace policy. The pre-conditions for your organisation to be able to
develop and implement a workplace policy, what you expect from your donor, how to access resources
and services when needed, how to advocate towards government and national health programs must be
taken into account when writing a project plan. Your participation in this initiative means that you will be
challenged, together with other partner organisations of the SAN! Partners, to formulate and implement a
project plan, which is ultimately aimed at having HIV/AIDS Workplace Policies and Programmes
The third sub-project C will emphasise communication. Communication needs to be established on
different levels aiming at linking and learning. Levels are: 1) donor - donor 2) donor -counterpart 3)
counterpart -counterpart.
Participation
What does this initiative mean for your organisation?
You are invited by your donor organisation on behalf of STOP AIDS NOW! to participate in this
initiative. This invitation will be sent to all counterparts in India of the STOP AIDS NOW! partners.
Participation means:
- Your orgamsation can deliver input on what “Good Donorship” could mean for your donor together with
other organisations in Uganda / India in times of HIV/AIDS
2 Counterparts are partner organisations/ partners/ southern counterparts of SAN! Partners.
33
- Your organisation will have the opportunity to participate to get support for the development and
implementation of a comprehensive workplace policy together with other organisations in India in times
of HIV/AIDS
- Your organisation will start/ continue/ further develop and implement a comprehensive HIV/AIDS
workplace policy and the necessary technical and financial support will be provided. Your organisation
will be informed regularly on issues related to HIV/AIDS in the Workplace.
STOP AIDS NOW! has scheduled a starting event being one day workshop “Managing HIV/AIDS in the
Workplace'' on 22nd November, 2005 at Bangalore, India. Your organisation will be informed about this
initiative and workshops will be given on topics related to “Managing HIV/AIDS in the Workplace”. This
event should result 4n a local project group that will lead the sub-project B Workplace Policies on behalf
of all participants in this initiative. A local project co-ordinator will be employed.
Starting Event
If you wish to participate in this initiative and attend the one day workshops “Managing HIV/AIDS in the
Workplace” on 22nd November, 2005 at Bangalore, India. More information on the programme will be
sent later. Please fill in the participation form and return it to your contact at Novib, Cordaid, ICCO and
Hivos and to Bishwadeep Ghose b.ghose@hivos-india.org or hemalatha@hivos-india.org at HIVOS, India
Regional Office, Bangalore, India. Bishwadeep Ghose can be reached by phone + 91 80 22210514/
51121002/ 22270367 (fax). For more information on this initiative contact STOP AIDS NOW! Project
Officer Yvette Fleming at vfleming@stopaidsnow.nl.
o
34
Dear Participants and Resource Persons,
The Hivos Regional Office would like to thank each and every one of you on behalf of the co-financing
agencies of Cordaid, ICCO, Novib and STOP AIDS NOW! for attending the “Managing HIV/Aids in the
Workplace” on 22nd November, 2005. Your participation and contribution was very much appreciated.
The draft workshop report is attached and if you have any observations please get back to us with your
comments before the 14th of December. The email is hemalatha@hivos-india.org
We at Hivos would like to make clear that the project Managing HIV/AIDS at the Workplace is an
initiative of STOPAIDS NOW! and that our office as one of the partners of STOP AIDS NOW! facilitated
the first workshop. The follow-up activities/meetings/ideas regarding Managing HIV/AIDS at the
Workplace will be conducted and formulated independently of Hivos and STOP AIDS NOW!. Both
Hivos and STOP AIDS NOW! are very much committed to this initiative but future plans will need to
reflect the needs of the participating organizations and the communities they work in.
Beginning of February STOP AIDS NOW! will be sharing the draft test version of the Good Donorship
Guidelines with you to be tested out or one year. SAN! believes that grassroots organizations can build up
the dialogue on these issues, being stimulated by these guidelines, but done autonomously in collaboration
with other grassroots organizations.
It was a good first-hand opportunity for the Hivos Regional Office to collaborate with SAN! in hosting
this workshop. And, last but not least we again remain thankful for the unique opportunity to dialogue
with all of you.
Thanking all of you once again,
Yours sincerely,
Mr. Bishwadeep Ghose
Programme Officer, Hivos India Regional Office
Dr. Shobha Raghuram
Director, Hivos India Regional Office
35
0
PARTICIPANTS PRESENTATIONS
HIV and AIDS- INDIA
HIV and AIDS POLICIES AT
THE WORK PLACE
HW.rfAOS4.ln*.
Christy Abraham
ActionAid International India
WUNGHJ GENERATION
ANO WORKFORCE
■
I
GENePAL COMMUNITY
INCREASING ORPHANS.
WIDOWS ANO CHILDREN
2
OPPORTUNITIES AND
CHALLENGES
HIV and AIDS and
Development Organisations
• DEMAND FOR
SERVICES
• RESOURCES
• FUNDS
• INFORMATION
©
• NATIONAL POLICY
• INTERNATIONAL
SPACE AND
DISCOURSE
c ""
SILENCE
STIGMATISATION
FEAR
MYTHSAND
MYSTIFICATION
• PATRIARCHAL VALUES
• AWARENESS NOT
LEADING TO CHANGE
AND ACTION
• LACK OF CARE POLICIES
•
•
•
•
3
ORGANISATIONAL
GOVERNANCE
Work Place Policies- Why ?
• Virus does not discriminate- All are Vulnerable or
at Risk
• HIV can be prevented and We have a
responsibility to ourselves
• HIV is not AIDS- Positive Living extends
productive life and provides quality to Life
• It is not HIV that Kills- Fear, Lack of Food,
Medicines and Care Kills
• Safeguards Rights of all Human Beings
5
36
SHIFT FROM IEC TO BCC
START FROM WITHIN
ENDORSE THE GIPA PRINCIPLES
ADOPT THE EQUITY AND RIGHTS FRAMEWORK
DEVELOP A CULTURE OF INCLUSIVENESS
DEMONSTRATE AND COMMUNICATE
DEVELOP GUIDELINES,RULES.POLICIES,
PROCEDURES
• IMPLEMENT, REVIEW, REVISE
•
•
•
•
•
•
•
i
a
THE NEED HAS EMERGED
RESPOND NOW !
CHALLENGES
• Lack of conviction
• Culture of Organisations
• Resources
• Funds
Thank You ...
8
37
NESA
NESA works to secure life with
dignity among Dalits, Adivasis
and other vulnerable
communities numbering over
5.5 million in 6,600 villages of
Karnataka, Tamil Nadu and
Kerala.
New Entity for Social
Action
N E S A
trv
w«l*
Life with dignity
A? 3 F
14
13
New Entity for social
Action (NESA) is a
network of 42 voluntary
organisations, some of
whom are Dalit and
Adivasi networks
NESA focuses on rights Dalits, Advasis, Women &
Children
From the start in 1998 NESA
took HIV/AIDS as one of its
focus areas
A_£_3_K-
13V
16
15
HIV/AIDS IS ALSO A RIGHTS
ISSUE
FROM 1997 TO 2005 NESA TRAINED
AROUND 2900 STAFF OF 355 NCOS.
They in turn covered
The right to knowledge and the
means to protect yourself
4142 Sex workers
83634 Men with multiple partners
25980 School & College Students
116280 CBO members
The right for those affected to
avoid discrimination and to A e 3 M
V3J
access services
17
38
o- 2900 Staff trained
805486 Mass community
vt?
tiv
18
BUT THERE IS A NEED TO REACH
STAFF
WORK PLACE POLICY
• NESA’s HIV/AIDS programmes were
developed with the community in
mind. But we expected the work in
community to reach the staff also.
• Surveys by NESA partners find 6070% of men in marginalised
communities have non-marital sex
• There is as yet no specific work place
policy for HIV/AIDS
• Do staff also have non marital sex ?
A <! 3 W
• What about the husbands of the
women staff ?
w
19
I VP
20
WHERE TO START ?
NEED TO REACH STAFF
• Helping staff to protect themselves and
to access care will assist with
integrating HIV/AIDS into development
work
• We notice risky sexual practices
among NGO staff
• We see HIV infections among them
• The opposite is also true - integrating
HIV/AIDS into development work will
also protect staff
• We know staff who have died of
HIV/AIDS
THE IMPORTANT THING IS TQ
START SOMEWHERE !
21
TRAINING WORKS FOR
STAFF ALSO....
IMPACT ON STAFF ?
Before training 90% of staff say
“HIV/AIDS can never affect me”
• Staff realised that that HIV/AIDS is a
problem in the society and an issue in
development
After training 95% of staff realize that
they could be affected
• Staff understood risk factors in the
community some also understood their
own risk factors
Risk perception is one of the keys for
3 m
prevention
• Staff met HIV positive people - this
increased visibility of HIV/AIDS - knowrutg *
be a prevention measure
KU
23
3*?
22
OTHER PROGRAMME IMPACT
Lessons and
Challenges
• NESA works against
discrimination, this includes
discrimination against those
infected by HIV
These also apply to
internal mainstreaming
• NESA works for gender equality
- gender equality is a powerful
AIDS prevention measure,
A 2 3 H
yy
25
yy
LESSONS AND CHALLENGES
DIFFICULTIES
“Above all, the challenge of AIDS
is a test of leadership”
Kofi Annan
• Talking about sex & sexuality
• Talking about condoms
• Distributing condoms
• You may be accused of
encouraging sex among staff
or have some other motive for
interest in AIDS.
NGO leaders like National leaders
have to act - those who have had
personal experience are the fast
accepters.
28
27
OBJECTIONS
“Aids...., here ? You are joking”
Know what to expect:
- anticipate the
opposition
“There are more pressing problems
than Aids”
“Aids is a fashion but good to get
funds”
“We must advise tested blood and
clean injections”
a g 3 m
w
20
40
26
OBJECTIONS
HOW TO START
“Talk about sex and condoms will make
our image go down”
“It is an insult to say staff are at risk”
“Condoms are not 100% safe you
know... ”
“US Government advocate abstinence
only, perhaps they are right....”
3
BELIEFS, ATTITUDES AND VALUES - NGO
LEADERS, STAFF, ORGANISATION
J
CHECK AND
UNDERSTAND OUR
OWN BELIEFS,
ATTITUDES AND
VALUES
UP
32
PLEASE REMEMBER
HIV is not a moral issue and
needs a response that is
caring and compassionate,
personalised and pragmatic,
realistic and responsive.
HIV is not a problem
HIV can never affect me
Condoms promote promiscuity
Homosexuality is not normal/ sin
Sex is sinful (but fun)
Its your own fault if you get HIV
There are “innocent victims” (others are guilty?)
HIV + women should not bear children
az™
33
34
PLEASE REMEMBER
WHAT CAN WE DO?
There are no INNOCENT VICTIMS
• Make sure that all staff know and understand
- The real threat of HIV
- Gender & reproductive rights
- Basics of HIV/AIDS prevention
- Basics of care
Are the others GUILTY?
People living with HIV and Aids suffer
enough without being made to feel
guilty
ae a m
vv
A g 3 X
35
UP
4/
36
BREAK THE SILENCE
MAKE AIDS VISIBLE
• Silence leads to stigma and
discrimination
• Visibility of PLHAs actively
promotes risk perception
• Facilitate staff to interact with
positive people
• Stigma and discrimination makes
it harder for people to change
their behaviour
UP.
• Invite “Positive speakers” to speak
at your functions
SUPPORT AND WORK WITH
PEOPLE LIVING WITH HIV
AND AIDS
THIS SHOULD BE A
DEVELOPMENTAL AND
WORK PLACE POLICY
UP 30
RESPONSIBILITIES OF
DONORS
(Good Donorship)
RESPONSIBILITIES OF NGO
PARTNERS
WHO HAS TO TAKE THE
LEAD?
A, £ 3 H
W
UP 38
37
WHY SHOULD WORKING WITH POSITIVE
PEOPLE AND THEIR ASSOCIATIONS BE AN
ORGANIZATIONAL POLICY?
- It helps suffering people to feel better, to
avoid discrimination and to access services
- It actively prevents new infections in
community and staff
- It encourages a caring attitude in staff ^nd
puts HIV firmly on the agenda.
4o
So far the NGOs have not
taken a lead - they have left
AIDS to the Aids service
organisations
So far the donors have not
pushed NGOs into active |||
prevention and care activities —
42
“We have reached a stage in
the spread of Aids that there
is almost no time left for
merely thinking and feeling
and talking... Concrete action
is what is required every day
and every hour”
w
vo
Nelson Mandela
At least 5 States in India have
1% of adults infected.
If politicians don’t take AIDS
seriously then NGOs must
press for change
A ? 3 >t
43
VO
If NGOs don’t take AIDS
Seriously then Donors must
press for change
THAT IS “GOOD DONORSHIP”
A? 3 M
45
43
44
What is Mainstreaming
• Mainstreaming is a process whereby
“internal”
policies
and
“external”
approaches are conducive to and work
towards realising a vision through
participation and in partnership with
vulnerable communities reflecting the
diverse needs, views and interests in
addressing HIV/AIDS not merely as a
health issue but as a development issue.
Coping strategies developed on
internal mainstreaming
- Process and content
SIAAP
OUR BELIEF AND EXPRESSION
50
49
We believe...
We believe...
• “Our sexuality is a fundamental part of who we
are
• Our rights to well being includes a right to
sexual and reproductive well being irrespective
of gender, sexual orientation and behaviour
• Sexuality, gender and human rights should be
integrated into all ‘development’ initiatives
• ‘Community* led initiatives are relevant,effective
sustainable and have to be fostered to
complement NGO efforts”
• Siaap should always give the first priority to the
community.
• Siaap should be sensitive to sexuality and
gender issues.
• Respect for and equality with people we work
for.
• Siaap should respect the right to privacy and
confidentiality.
52
51
Internal policy
Expression: LANGUAGE
• Community members involved in planning and
implementation of the programme
• PLHAs, WSW.MSM community members form a
part of the Siaap team as supervisors,
coordinators.
• Equip community members to compete with
other Professionally qualified candidates at
manager level positions.
• Community organisations to be supported mainly
with training and not funding.
• Policy of recruiting community members, Single
women - no compromise on competency &
quality of work
Generally in the field of HIV:
Metaphors used are of war • Fight against, destroy HIV, HIV free world.
• Leading to Stigma / Discrimination, isolation of PLHA
AT SIAAP:
• “We" instead of “US and THEM, “Work with" instead of
“Work for”, “Owner” instead of “Implementer”,
Responding based on internalization instead of
responding based on information, Sensitization instead
of Awareness - discussing instead of talking to .
53
54
• Create a more accepting and transparent
environment within the organisation.
• Work through individual belief systems through
Foundation Training, community level orientation
& exposure.
• Ongoing capacity building for community
members at different levels including training
them as trainers.
Focus on handling abuse, sexuality, gender and
rights. This has helped in understanding and
accepting self, leading to personal development.
• Ensure work ethics... periodical supervision
through SSS.
• All trainings - A Mix of community and non
community members (listen, live and leam)
• PLF a facility to access the
necessary services.
55
56
External approach
As per intervention Phases:
• Phase 5: Building peoples organisations
and Favourable environment.
• Phase 6: Mainstreaming individuals in the
community, by strengthening individual
capacity.
• Strengthen capacity of vulnerable
communities to handle community specific
issues as well as the general community’s
issues.
• Phase 1: Need of the Hour - focused on impact
of the Epidemic on rights of individuals.
• Phase 2: Spearheading interventions - NGOs
response
• Phase 3: Focus on Vulnerable community’s
issues
• Phase 4: Focus of specific community’s issues
and their response
57
58
> Promote policy to integrate issues of sexuality,
gender, human rights and reproductive health in HIV
interventions.
> Strengthen legal and medical networks to address
issues of discrimination and care of PLHA and other
affected communities.
> Sensitize and involve local governance bodies
(Panchayats) to create a favourable environment.
> Sit-in dharnas, Protests, lobbying with government
officials and departments, media advocacy for
bringing the community’s issues to the public
realm
> Setting up viable and replicable Community
Counseling Centers.
• Negotiating with NACO and Local SACS and placing
community members as counsellors in Government
settings.
• Inclusion of a PLHA representative as the sixth
member in the ICTCs.
• Thrift and Credit co-operatives critical to empower
Vulnerable community and to mainstream them
within the General community.
• Equitable participation: Promoter agenda ->
Implementor agenda -> Partnership agenda ->
Ownership agenda.
59
60
u.5
Internal: Challenges ....
External: Challenges
• Diversified needs and prioritizing based on ground
realities and capacity of the organisation.
• Death and Dropouts inspite of Long term on going
mentorship training and supervision
• Illness slows down performances of active
community members.
• Adopting training Methodologies and presentation
of content
• Handling personal issues takes up time and energy
• Focussing on technical competency and building on
Academic qualification.
• Handling community and non-community dynamics
within the organisation as well as during trainings
• NGOs effective in service delivery but were not able to
take the community1 s Advocacy related needs ahead
which were the community’s top priority.
• State sponsored violence
• No favourable policies with regard to WSW, MSM and
PLHA
• Discussing and creating an understanding on the
influence of External control and importance community
ownership
• Identifying members with leadership qualities and
sustaining their motivation levels by appropriately
handling the dominant members within the sangams.
• Positioning the community sangams as a resource in
the local environment
62
• Facilitating a process of effective partnership with the
61
Challenges were met with a
perfect mix of......
• A favourable organisational policy
• A steady, committed, passionate, inspiring and
visionary leadership
• An understanding, experienced, dependable
core group to strategize
• An committed team of implementors with skills to
work at grass root level.
• Competency to handle crisis through effective
use of like minded people ready to support the
cause in the immediate environment
63
O
Thank you
64
Definition of Stigma
Goffman(1963) defines stigma as an attribute that
is deeply discrediting and results in the reduction of
a person or group from a whole and usual person
to a tainted, discounted one.
The Basis of Stigma and
Discrimination
By regarding others negatively, an individual or
group confirms their own “ normalcy” and
legitimises their devaluation of the “other”
Managing HIV/AIDS in the Workplace,
SAMRAKSHA
Nov 22, 2005, Bangalore
68
67
Stigma as a Dynamic Process
ide the “tainted” from .
“usual”
‘ ,
the^t w&h11
f; and *the^”jcreatipgj
Wide \:
Link and Phelan
(2001) and Gilmore
and Sommerville
talk about this
process happening
within the context of
power
Stigma may be used to
legitimise and perpetuate
inequalities
• Gender
• Caste
• Sexual orientation
• Class
• Ethnic Groups etc
70
69
From Theory to Practice
In HIV/AIDS
• Creating greater recognition about stigma
and discrimination
• In depth knowledge about HIV
• Providing safe spaces to talk about values
and beliefs underlying stigma, especially
sex and sexuality
• A central role for people living with and
affected by HIV
• Knowledge
• Fear
• Morality: sex, sexuality and taboos
• Illness, disfigurement, death
• Internal Stigma
• Double stigma
• Secondary stigma
71
72
MANAGING HIV/AIDS IN
THE WORKPLACE
THE I.L.O. CODE OF PRACTICE
HiV
22nd November 2005
iNsa^i
I
74
73
OPPORTUNITY
LOGICAL
ECONOMICAL
75
SUSTAINABLE
76
HIV IN THE WORKPLACE
OPPORTUNITY
I
78
PREVeNTI®
V-
79
80
INCREASED
PARTNERSHIPS
CAN WORK
AND SUPPORT
SELF FAMILY
. AND NATION
0
ACCESSIBLE CARE
RETAIN SKILLED
STAFF
LABOR FORCE
REDUCING MEDICAL
\
LEAVE
FOLLOW-UP
CARE
81
Prevention of HIV/AIDS
GUIDELINES
Management and mitigation of the
impact of HIV/AIDS
TO ADDRESS HIV/AIDS IN
THE WORKPLACE
Care and support of infected and
affected workers
Addressing stigma and
discrimination
83
84
KEY PRINCIPLES ~
CODE APPLIES TO
Recognize HIV/AIDS Jslfwor^pScPifiue
• All employers and workers in public and
private sectors
• All aspects of work - formal and informal
• Including applicants for work
Non Discrimination
Gender equality
Healthy work environment
Social dialogue
No screening for employment
Confidentiality
Continuation of employment relationship
Prevention
Care and support
• OUR WORKPLACES TOO
86
85
Form HIV/AIDS committee
- terms of reference
- decision making powers
- responsibilities
- assessments -participatory and
overall
CHECK LIST
TO
BEGIN
WORPLACE POLICIES
IN
OUR ORGANISATIONS
-formulates draft policy
-prepares plan of action and budget
-implementation and monitoring
-revisions, if required
88
87
INSA EXPERIENCE
WORKPLACE
POLICY
• INSA formed ethical principles
• 1991 - Principals of schools drew up policies at
workshops
• 1992- Managers at workplaces drew up policies
at workshops
• BUT
• DRAWING UP POLICIES IS SO DIFFERENT
FROM LIVING THE POLICIES EVERY DAY
INTEGRATE INTO
COMPREHENSIVE
ENTERPRISE POLICY
90
89
So
Fact Sheet
HIV/AIDS & the Workplace
• 5.134m Indians living with HIV/AIDS
-15-49 age group
- Economically productive workforce
- 38% infected - women
“The Bangalore Story”
By
Bangalore Medical Services Trust
& Research Institute
92
91
The BMST Background
Fact Sheet cont’d
• Companies lack Non-disclosure Policies
shielding HIV infected workers • No insurance cover for HIV/AIDS
• Anti Retro Virals - expensive
• Stigma - high
• Blood banking
- Corporate donor organizations
• The “ClI” hat
- CSR Sub-committee
• AIDS Awareness Programs - some companies
94
93
The Issues...
BMST’s Workplace Programs
• Perception of Risk
- By client organization
• Managerial-level Sensitization
• AIDS Awareness Programs
• Peer Educators approach
• Sustainability
- Of Workplace programs
• HIV/AIDS Workplace Policy
- Desirability?
90
95
51
Perception of Risk
Sustainability
• No Risk
• External agency AIDS Awareness
Programs
• Low Risk
- Follow-up?
• High Risk
• Peer Educators approach
- Logistics?
97
98
HIV/AIDS Workplace Policy
The Cll Stand
- Legal-ethical issues
• HIV Testing
• Confidentiality
• Discrimination
• Corporate Social Responsibility
• Support Proactive companies /
industries
- The Bottom line
99
100
THANK YOU!
Implications The Long Road..
For any further information please contact
Bangalore Medical Services Trust & Research Institute
New Thippasandra Main Road,
HAL III Stage
Bangalore - 560 075
Karnataka, INDIA
Ph: 91-80-25287903 / 25293486
Fax: 91-80-25202714
• Ground Reality check
• Gaining entry
• Address “felt needs”
URL: www.bangaloremedical.org
Email: aap@bangaloremedical.org
101
52
102
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aging HIV/AIDS in the Workplace inrttative
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Rationale
itiative aims at adjusting policies and practices of
The ing
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CDR4 pordaid) Southern Africa Study (report
t$ike Novib, ICCO, Memisa (Cordaid) and
donor®
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g^4p^^Hy on support
iprtand donor
i IV/A!OS In the,
f/AJDS in the vyori
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Good Donorship
Project Initiation Document
Results
approved May 2005
Good Donorship Guidelines will inform how to suppoi
development and implementation of a HIV/AIDS
Workplace Programmes (comprehensive) with
$
counterparts
.
and
^j^atfphs;.what .to expect from their
’ G0<i Donorship | onor)
- Woi |ace Policy
- Comi feipationi
XI’S
(Link North-1®
North-South)
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-. *
jj^^Muorship Guidelir®
igl
organizations an®
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4IV/AJDS In the.
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o$h corti^-ehensive workplace policies including a stigma and
------1. .-x.-'c and aC;cess (q ca^ strategy
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dteqrjpiinatipn
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; content and process to be definedI in Uganda and
India ~
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A about their responsibilities, rights and expected^eh^avi JtotJ the
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mmunication
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responsibility towards febpportive policies of donors
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the development and implementation of workplace
policies of partner organisations ■
■ Mi A'‘
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Task
<1 -
Model in Uganda
Facts Uganda
- over 60 parti^ating organizations
Local Project Group (with ToR)
Chair (choo*on)
Loci Project Coordmator (ToR funded by SAN!) and
hoeted and financially manage by ACORD
Member (6 partner organization.)
PWHA organization/^^, to guarantee the GIPA
principle
.
hwohroment of other stakeholders (government, UNAIDS,
business sector, care providers) when applicable
- strong political will in Uganda on addressing
HIV/AIDSJ
HIV/AIDS.
TfeX5!^fcwent or9a^ation are experts on the
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pr^k^:
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karere University
MjnaflinaHIVIAIDSInth^WortiplacelnHiati
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- Designing and implementjng the Workplace Policies pilot
project (strategic plan for Uganda is submitted)
- Reporting about the project progress to participating partner
organizations and to the Project Coordination Group (Yvette
Fleming Project Officer)
Model in Ethiopia
Facts Ethiopia
-11 organizations selected by the donors and funded
by SAN! deyelpped a workplace policy individually
and shared, th ^outcomes in workshop
J
- jointly writinggisecond
Ksecond ^^se proposal whereby one
^pacity^M^g
^organization is taking the lead
a
^^organization
S^d. Donofishii^S^delines
— what
- will use
Adelines “in*term
11 individual Organizations saioctod by the donor
Flrtsphase: vk- -'’•:Xvs&0Sw»
Support fro^nTa mastw In pubflc heatth •tudont.^s
.■
L«^ Gorteirftant
Locri
Con&irftant on HIV/AiOS
HIV/AtDS
Usad a saffassesnwtrt method to assed thek H1VWJDS
^cwn^taTCee^-?--' ~
:2»\ \ '
ohep partnerorganization
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■-sa
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' ': ■. ’•;/'-' | Tasks
Needs to be further defined in Ethiopia
S
.>
Discussion
-
g^^^Sative being
(led ^^^febut we are d
leadership
Particip^ti(|i;in this initiative?
How wQuldyou like to take this initiative further?
How are yBgoing to n^^ sure that we move to policies and
from ralic||s into practices
»„£S'
fsJng on yourorganu
reach!)
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AIDS
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OTHER REFERENCES
4.
OTHER REFERENCES
4.1.
Joint ILO/WHO Guidelines on Health Services and HIV/Aids, International Labour
Office, Geneva, 2005 - Refer to the Website-
http://www.ilo.org/public/english/dialogue/sector/techineet/tmehs05/guidelines.pdf
4.2.
Understanding and Challenging HIV Stigma: Toolkit for Action-Trainers Guide,
September, 2003 - Refer to the Website: www.changeproject.org
4.3.
Draft
legislation,
Lawyers
Collective
-
Refer
to
the
Website-
the
Website-
http://www.lawyerscollective.org/lc hivaids/draftlegislation
4.4
The
HIV/AIDS
Bill
2005,
Lawyers
Collective
Refer
http://www.lawyerscollective.org/updates/HIVAIDS-bill-2005
56
to
Address: Humanistic Institute for Co-operation with Developing Countries, Netherlands, (Hivos), India Regional |
Office, Flat No. 402, Eden Park, No. 20, Vittal Mallya Road, Bangalore 560 001, India
Tel. +91-(0) 80-22210514/51121002, Fax +91-(0) 80-22270367
For correspondence Email: hemalatha@hivos-india.org
I
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