By Mike Frick
From June through early August, I
helped Asia Catalyst’s partner organization, Phoenix, to train five volunteers
in research and rights documentation skills. Phoenix is an NGO that serves
women living with HIV/AIDS – many of them sex workers and drug users — in
Gejiu, Yunnan Province, China. The five participating volunteers on our
research team are all former drug users, and several of them also work as sex
workers. Our goal was to build their capacity to conduct the kind of research
that can inform advocacy and make a difference in the lives of the community
Phoenix serves.
After surveying the needs of their
community, the volunteers decided to research medical discrimination against
people living with HIV/AIDS. Members of Phoenix report being turned away from hospitals
charged for un-rendered services or required to purchase all medical
instruments used in their care.
Our training program lasted eight
weeks and included workshops on selecting a research topic, conducting
formative research, protecting personal information, conducting interviews,
organizing information, analyzing data, planning advocacy, evaluating results
and writing reports. These classes were based on Know It, Prove It, Change It! A Rights Curriculum for Grassroots Groups, a manual on rights documentation currently in development by Asia Catalyst,
Thai AIDS Treatment Action Group, and Korekata AIDS Law Center.
The research team devoted three afternoons a week to the project and conducted all of the interviews
themselves.
The following four principles guided the direction and focus of our training program:
1. Develop practical tools. The training course emphasized the
use of hands-on, visual tools for analyzing information, planning advocacy and
writing reports. Team members learned how to analyze the data they collect
using cause-and-effect maps, event time lines, theme selection and rights
squares. In another exercise, they used relationship maps to identify potential
advocacy targets and allies, and then divided these individuals and
organizations into supporters, un-mobilized parties and potential opponents. The
goal of this exercise was to help team members to think about advocacy
strategically, and to approach research as a tool to strengthen social change.
2. Use real-world examples. The course used examples of both
local and international research and advocacy projects in order to illustrate abstract
concepts. We revisited the same examples throughout the course, in order to
establish continuity and demonstrate the progress of research projects. The
volunteers learned about child labor on tobacco farms in Malawi, a case I had
personally worked on, in order to understand basic rights principles and to practice
using those principles to analyze a problem. We practiced research skills by considering cases
in which schools discriminate against children affected by HIV/AIDS – a
phenomenon with which our team members are familiar. Finally, volunteers
learned about the U.S. student movement against sweatshop labor to understand advocacy
strategies such as alliance-building, letter-writing and lobbying.
3. Make informed consent a priority. Before beginning interviews, the
volunteers learned about the importance of protecting the personal information
and privacy of interviewees. Many of the volunteers have themselves experienced
violations of privacy related to their status as sex workers and women living
with HIV/AIDS, so they had no trouble understanding the importance of this
principle. Volunteers studied the four basic components of informed consent –
disclosure, voluntariness, comprehension and competence – and debated the
merits of obtaining oral vs. written consent. They analyzed the potential risks
to others of participating in the research project, and learned how to identify and
respond to interviewees suffering from post-traumatic stress disorder (PTSD).
4. See research as a means, not an end. Most importantly, this program
introduced the concept of research as a tool rather than as an end in itself. Early
in the course, one of the team members asked: “Can this kind of research really
improve our situation? Will people with power actually listen to us?” Like all
researchers, they quickly realized that research and advocacy are long-term
endeavors with pay-offs that often seem distant and unattainable. I was most
impressed by the resolve and dedication the volunteers invested in this project,
even knowing that this research represents just a first step toward lessening
medical discrimination against people living with HIV/AIDS.
The research team is currently
analyzing the information they collected. They have begun to write a report and
plan advocacy aimed at ending medical discrimination in their community.
Mike Frick is an MPH student at Harvard University, and was a summer graduate intern
with Asia Catalyst. Some of the tools from the Know It, Prove It, Change It curriculum can be downloaded at https://asiacatalyst.org/resources/cbo-resources/.
