History of GIPA and MIWA

From the early days of AIDS in North America, people with AIDS were ostracized from society and family. Little was known about how to treat AIDS, and fear of infection was high. Governments were slow to respond; research couldn’t move fast enough and many people died. Treatments that were tried often had difficult side effects, but people were urged to take them for want of anything else. From this time  a new kind of community response was formed, a type of activism that had never been seen before- by the people, for the people – charged with passion to challenge healthcare practices, governmental policies and decisions, and medical research.

In 1983 (the year before HIV itself was identified) people with AIDS developed the Denver Principles, a set of recommendations to challenge how they were being characterized: “We condemn attempts to label us as ‘victims,’ we are only occasionally ‘patients’. We are ‘People with AIDS.’

The Denver Principles led to MIPA (Meaningful Involvement of People with AIDS) and then the Greater Involvement of People with AIDS (GIPA) principles in 1994. Simply put, “GIPA seeks to ensure that people living with HIV are equal partners and breaks down…  assumptions that those living without HIV are ‘service providers’ and as those living with HIV are ‘service receivers’”. Like the original Denver Principles, GIPA states that people with HIV have the right to self-determination in decisions that affect their lives.

PWN recognizes the critical necessity of GIPA for all people living with HIV but particularly for women, whose voices can be overlooked in decision-making. Gender inequity is a highly influential social determinant that affects physical and mental health, as well as risk factors for HIV. HIV is not analyzed through a gendered lens, and typically structured healthcare and community services are not based on women-centred care, often furthering inequities.

GIPA was not developed with acknowledgment of socially structured gender inequities, as noted by Canadian research team CHIWOS as well as the International Community of Women living with HIV/AIDS. We recognize that moving GIPA to a more women-centred model – Meaningful Involvement of Women with HIV/AIDS or MIWA – is needed. Positive women’s issues encompass HIV related health, but also sexual and reproductive health, criminalization of HIV that is gendered and dangerous, gender-based violence, primary needs such as housing and food security, multi-generational care demands, and more. These issues need to be considered in the overall picture of GIPA, but often aren’t.

Women with HIV live the realities, and can identify directions in health care, support, education and advocacy. We see the benefits of GIPA/ MIWA for individuals in improved confidence, self-esteem, community connection and access to resources. The community benefits too – when positive women participate in service and resource development and share their realities to direct change, they bring added awareness of the dimensions of HIV. The work of one makes a difference for many.

Implementing GIPA in Non-Profits

As doctors scrambled to medically manage AIDS, groups of volunteers worked to meet positive people’s needs for peer-connection, essential in the face of enormous stigma. They also needed treatment information (sparse as it was) and often, end-of-life care. Many of these volunteers had HIV and were facing these issues themselves.

As the numbers of people with HIV grew, demands grew. A few volunteers had experience in providing care and support, but many didn’t. Providing support was hard; money was non-existent; volunteers had jobs, or often got sick themselves.

Groups began to apply for non-profit status so they could receive funding to organize services and hire staff. Organizations developed with guidance and participation of positive people as staff and volunteers; funding contracts provided financial stability for services. The need for more specialized services was identified, some of which required social workers; educators to take on the ever-present stigma and ignorance; managers to oversee planning, consistent service delivery, and finances.

The GIPA principles ensured that as organizations across the country grew, they did so with the voices of positive people at their individual and collective tables. Honouring GIPA means commitment to ensuring positive people can participate at each level of an organization- governance, staff and volunteers. The requirements of different roles demand different levels of training, experience, and in some cases, disclosure.

It is an agency’s commitment to GIPA that demands that wherever possible all measures must be explored to ensure that positive people are given the opportunity to be in these roles. An organization’s size, public profile, community (large or small; rural or urban) can influence whether positive people participate in an organization. In agencies that are dealing with small populations (such as in PWN in BC where there are approximately 1400 women living with HIV), there can be challenges.

In a seamless GIPA model, positive people identify service needs and work to deliver them. For some, personal situations might make this difficult. It may be disclosure concerns, chronic physical or mental health issues, insufficient experience, training, or certification for a particular position; financial issues (such as an individual losing their governmental support if a position pays past a certain limit), family or relationship constraints, such as a controlling or abusive partner.

Limitations may occur because of organizations themselves. There can be cultural, structural or racial barriers to involvement. It can be because of the organizations’ lack of preparedness or commitment to implement GIPA, especially through a gendered or racialized lens. Organizations must examine and address these issues.

Every organization must work to create an organizational balance that incorporates GIPA principles within its delivered contracted services.

GIPA and MIWA at PWN

PWN has grown from a small peer support group to a comprehensive organization that focuses on HIV and related social and health determinants impacting women’s lives. We provide multiple services to women with HIV, health care and social service providers, community based organizations and researchers. We started as a partnership of women with HIV, and allies. The idea behind this was that when positive women could not carry on for health or other reasons, the work wouldn’t end. The partnership also made it possible for positive women who weren’t ready to publicly disclose to take part without fear of exposure.

One of our guiding principles is that women determine their own path, and this means we encourage them to decide their level of involvement in MIWA and assist them to reach it on their own terms. Positive women may choose to get involved in all levels of the organization: on the Board of Directors (Governance), in program development and delivery and in the community at large.

As organizations evolve and grow it is imperative they take the time to evaluate and self-reflect on whether they are working day to day within their founding principles. Upon reflection over the past several months, and digging deeper into what GIPA/ MIWA means for women living with HIV, in particular women who face greater barriers to participation (barriers not of their own making), we recognized that there is more we could do to ensure MIWA is at every level of our agency.

As of January 2016, we support GIPA and MIWA in these ways:

Board of Directors: We have 3 spots reserved for positive women on the Board of Directors, which is responsible for strategic planning, policy review and development, and leadership.

Program Development and Delivery: Positive women assist in planning, refining, and delivering programs. These include but aren’t limited to:

Peer Support: We know that lived experience in peer support is critical and encourage positive women wherever possible. We provide Peer Support Training as well as ongoing assistance afterwards for support group facilitators and those providing individual care, because peer support can be intense and we frequently see women need to take breaks from the work.

Education: Positive women develop and facilitate workshops at skill development weekends, and conferences. They also facilitate sections of Peer Support Training.

Personal Development:  We support positive women who want to take part in programs in leadership and peer support beyond PWN, such as the Pacific AIDS Network’s Positive Leadership Development Institute. We also provide ongoing help to women working in peer –focussed programming in other HIV-based organizations.

Executive Mentorship: in the past we have used an informal mentorship model to support women wishing to learn about setting up events, groups or programs in their own communities. We provide advice on goal setting, development, applying for non-profit status, and more.  We are formalizing this with set hours and sessions to make this a defined program.

Activism and Leadership: We support women who want to be positive representatives of PWN (or other organizations) contributing to research, programming, policy (or more) committees. They may do media appearances, or public speaking. These activities require public disclosure.

We work to compensate women in the most beneficial manner that does not negatively impact those living on Government assistance programs.

Hiring policy: Positive women are on staff, and whenever possible, we fill positions with people with HIV. Our affirmative action statement reads:

Preference in hiring will be given to Aboriginal women, women of colour, immigrant women, women with disabilities including women with HIV/AIDS, and economically disadvantaged women.

We have positive women on hiring committees and reserve peer-specific positions for women with HIV. We balance this goal with the need for expertise in the fields of social work, community development, finance, and education.

Moving forward, we are examining how to further embed GIPA/ MIWA principles in our work. So far this includes:

Responding to applicable calls to action from the Truth and Reconciliation Commission report Summary in 2015

Creating a Meaningful Involvement of Women with HIV/AIDS Implementation Manager (starting April 1)

Establishing an Indigenous Women’s Advisory Committee

Establishing a Positive Women’s Advisory Committee to the PWN Executive

Collaborating with various organizations similarly committed to ensuring women’s voices are central to moving forward on HIV and related health issues.

MIWA in the Community

It is essential in working with GIPA/ MIWA principles that we support each and every person to do so with confidence, dignity and respect. While we will encourage and celebrate with women as they try out new roles, we will not ask them to go beyond where they feel safe personally or publicly. Every person’s disclosure and activism journey is different and deserves respect.