Expanding Meaningful Involvement of People Living with HIV AIDS MIPA
Expanding Meaningful Involvement of People Living with HIV/AIDS (MIPA) Barb Cardell Venita Ray Julio Fonseca, Program Manager, AIDS United
Re/Building Community: The Impact of MIPA/GIPA Barb Cardell
Definitions Today…
MIPA is…
GIPA is…
The Meaningful Involvement of People with HIV/AIDS
The Greater Involvement of People with HIV/AIDS
GIPA means meaningfully involving people living with HIV in the programmatic, policy and funding decisions and actions that impact on our lives by ensuring that we participate in important decisions. -
Global Network of People Living with HIV/GIPA Report Card
What is MIPA? At its most basic, MIPA means two important things:
■ recognizing the important contribution people infected or affected by HIV/AIDS can make in the response to the epidemic ■ creating space within society for their involvement and active participation in all aspects of that response. UNAIDS (1999) Photo credit: Poz Magazine (2013)
MIPA/GIPA Pyramid
Decision Makers Experts Implementers
Speakers Contributors Target Audiences
UNAIDS (1999)
Why MIPA/GIPA? “People cannot achieve their fullest health potential unless they are able to take control of those things which determine their health.” --World Health Organization,
Ottawa Charter for Health Promotion (1986)
The first PLHIV document to address GIPA/MIPA
Photo credit, Peter Staley (1983)
The Denver Principles Recommendations for people with AIDS: 1.
Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
2.
Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
3.
Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
HIV = A history of self-empowerment
John J. Wilcox LGBT Archives of Philadelphia
Act Up, 1991. Photograph: Dirck Halstead/Time & Life Pictures/Getty Images
Network Empowerment Project Meeting, 2016, Milford, PA. Photograph: Ken Pinkela/Sero Project
The PWA/PLHIV empowerment movement was not born in isolation Self-empowerment movements of the disempowered existed long before the HIV/AIDS epidemic: Women’s
health movement
Civil
rights movements (African-American, Latino, Native, Asian, LGBT, feminism, etc)
Unions/workers’movements Anti-colonial,
anti-apartheid movements
Community
development/ anti-poverty/ welfare rights models
Community
education (Paolo Freire)
From the beginning: challenges
Death, poor health and burn-out of early leaders
Early movement dominated by white gay men - voices of people of color, women, and others often not heard
Growth of funding and pressures of professionalization often decreased community engagement.
Commitment to PLHIV leadership often faded.
And the challenges continue:
Little funding to specifically support PLHIV organizing or networks
Fewer people with HIV receiving disability and more people having to work more hours, multiple or lowwage jobs, to make ends meet.
Sense of urgency missing, complacency about treatment
Epidemic larger, more diverse than ever
Professionalization of AIDS Inc.
What prevents people from making MIPA happen? (Remember - Stigmatizing people aren’t aware they’re doing it)
Frequently Heard Comments…
This is MIPA enough
Who’s going to fund it?
Well, we already have an advisory group
Wouldn’t a service be a better use of resources
All your meetings are at noon, so we can’t show up
We tried this before
We can’t find the right people
Isn’t that standard a little too high?
This might be over their heads
The “Sandbox”
People won’t show up unless we feed them or give them gas card
We invited them but they haven’t come
We already have one what works at our organization
But you’re high functioning, ours aren’t like that
We have positive people are on our Board/group – but they’re not out
MIPA at the Local Level can affect great change
Photo T. Bogdan 201
From POP+ to MIPA Venita Ray
“POP+ inspired and motivated me to become an advocate. After hearing the stories from the mentors and participants, it changed me for the better. Viewing "How to Survive a Plague," made me have a greater appreciation for the many people that sacrificed and fought for us to reap the benefits of their great efforts.” DB Edwards
Original POP+ Scope: Educate HIV+ individuals about ACA and the marketplace Revised POP+ Scope: Build leadership in the HIV community by training PLHIV how to engage in a broad range of public policy related activities
How we evolved…. • Awarded POP+ grant • Attended AIDS United Training – Denver Principles/MIPA/GIPA • Held Focus Group w/long term HIV+ advocates • Revised POP+ Scope to MIPA • Community-wide Training (Denver Principles/GIPA/Organizing) • Redesigned POP+ Program
Long term HIV advocates • Helped develop POP+ program • Served as advisors, mentors and trainers.
Community-wide MIPA Training
Program Description Six week advocacy training designed by and for PLHIV building on the principles of the Denver Principles, GIPA and MIPA that teaches how to • Become leaders in the HIV/AIDS community • Advocate for issues affecting people living with HIV/AIDS • Get educated about issues that impact people living with HIV/AIDS • Get empowered to use their voice to make a difference and have meaningful involvement with HIV/AIDS organizations
Program • POP+ Overview/Denver Principles/GIPA • HIV 101 – The Basics • Advocacy Panel – Mentors • Affordable Care Act/ Mental Health • Community Organizing • Effective Leadership • Using Your Story as an Effective Advocacy Tool • Movie: “How to Survive A Plague” • Utilized long-term HIV+ advocates as mentors and program trainers
POP+ Requirements • Must be HIV+ • Required Reading - The Four Agreements • Must complete an advocacy project • Participate in 2 non-HIV community projects • Only one absence allowed • Meet with mentors at least twice • Provided gift card to trainers to operationalize MIPA principles • Mileage Reimbursement
Graduation 2014
WAD 2015 Candlelight vigil
POP+ Holiday Party 2014
ADAP advisory committee meeting 2015
MIPA in Action • Graduated 15/ 2014; 14/2015; New Class starts Oct. 2016 • Grads help design program for next class and serve as trainers in new POP+ class • Ryan White Planning Council (8) • New Heterosexual HIV Awareness Task Force to bring awareness to the heterosexual community about HIV. (3) • Started secret Facebook page • Deputy Voter Registrars (4) • Greater Houston Chapter of the Positive Women’s Network (5) • Led the fight against an HIV criminalization bill in state legislature. • Organized a holiday card signing party for Michael Johnson. We mailed 24 cards to him. • HIV is Not a Crime II – 4 graduates attended training academy • Produced play written by grad on HIV Crim w/HBCU
• • • • • • • • •
Lessons Learned Need ally/PLHIV to serve as gateway for others Solicit feedback at every stage Need to always highlight community members Be creative in finding the right level of involvement for all Need constant development and transition of leadership Seek and utilize community input whenever possible Convey ownership Reintegrate graduates as trainers and mentors • Build community and not just programs
The Positive Organizing Project: Meaningfully Involving People Living with HIV/AIDS
Julio Fonseca, Program Manager
AIDS UNITED
Positive Organizing Project
Technical Assistance provider for Positive Organizing Project
www.HIVcaucus.org
Previous POP Highlights Since 2014, AU has funded $295,000 to 12 grantees: • AIDS Partnership Michigan Detroit, MI • Brothers United - Indianapolis, IN • Chicago Women's Project Chicago, IL • Down East AIDS Network Ellsworth, ME • Georgia Equality - Atlanta GA • Housing Works - Brooklyn, NY
• Legacy Community Health Services - Houston, TX • Lifelong AIDS Alliance - Seattle, WA • Louisiana Public Health Institute New Orleans, LA • Mazzoni Center - Philadelphia, PA • Positive Women's Network Philadelphia - Philadelphia, PA • Unified – Detroit, MI
What is Positive Organizing? Mobilizing people living with HIV at the local level to: • Address HIV stigma • Raise HIV education and awareness among community leaders and policymakers • Ensure that meaningful involvement of people living with HIV/AIDS is present at all levels
Year 3 Project Design Two Tracks for the upcoming grant year:
1. Building a MIPA-driven organization: projects focused on concrete activities to strengthen the organizational practices and that operationalize MIPA values at the organizational level. 2. MIPA-driven grassroots projects: projects focused on specific grassroots activities that involve PLWH leadership.
POP Goals • Increase grassroots mobilization • Promote, increase, and strengthen leadership development for people living with HIV • Measurably address stigma • Improve policy, social, and community environment for effective HIV programs • Vigorous engagement of people living with HIV
POP Outcomes • • • •
Positive Leader development Enlivened agencies to expand MIPA internally and externally Expansion of community networks of people living with HIV Sustainability of Projects
Questions? Contacts: • Barb Cardell • [email protected] • Twitter @barbcardell • US People Living with HIV Caucus • www.HIVcaucus.org
• • • • •
• • • • • •
Venita Ray [email protected] 713-299-6123 Twitter @laadyv Legacy Community Health www.legacycommunityhealth.org
Julio J. Fonseca [email protected] Twitter @fonjulio AIDS United www.aidsunited.org
Re/Building Community: The Impact of MIPA/GIPA Barb Cardell
Definitions Today…
MIPA is…
GIPA is…
The Meaningful Involvement of People with HIV/AIDS
The Greater Involvement of People with HIV/AIDS
GIPA means meaningfully involving people living with HIV in the programmatic, policy and funding decisions and actions that impact on our lives by ensuring that we participate in important decisions. -
Global Network of People Living with HIV/GIPA Report Card
What is MIPA? At its most basic, MIPA means two important things:
■ recognizing the important contribution people infected or affected by HIV/AIDS can make in the response to the epidemic ■ creating space within society for their involvement and active participation in all aspects of that response. UNAIDS (1999) Photo credit: Poz Magazine (2013)
MIPA/GIPA Pyramid
Decision Makers Experts Implementers
Speakers Contributors Target Audiences
UNAIDS (1999)
Why MIPA/GIPA? “People cannot achieve their fullest health potential unless they are able to take control of those things which determine their health.” --World Health Organization,
Ottawa Charter for Health Promotion (1986)
The first PLHIV document to address GIPA/MIPA
Photo credit, Peter Staley (1983)
The Denver Principles Recommendations for people with AIDS: 1.
Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
2.
Be involved at every level of decision-making and specifically serve on the boards of directors of provider organizations.
3.
Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
HIV = A history of self-empowerment
John J. Wilcox LGBT Archives of Philadelphia
Act Up, 1991. Photograph: Dirck Halstead/Time & Life Pictures/Getty Images
Network Empowerment Project Meeting, 2016, Milford, PA. Photograph: Ken Pinkela/Sero Project
The PWA/PLHIV empowerment movement was not born in isolation Self-empowerment movements of the disempowered existed long before the HIV/AIDS epidemic: Women’s
health movement
Civil
rights movements (African-American, Latino, Native, Asian, LGBT, feminism, etc)
Unions/workers’movements Anti-colonial,
anti-apartheid movements
Community
development/ anti-poverty/ welfare rights models
Community
education (Paolo Freire)
From the beginning: challenges
Death, poor health and burn-out of early leaders
Early movement dominated by white gay men - voices of people of color, women, and others often not heard
Growth of funding and pressures of professionalization often decreased community engagement.
Commitment to PLHIV leadership often faded.
And the challenges continue:
Little funding to specifically support PLHIV organizing or networks
Fewer people with HIV receiving disability and more people having to work more hours, multiple or lowwage jobs, to make ends meet.
Sense of urgency missing, complacency about treatment
Epidemic larger, more diverse than ever
Professionalization of AIDS Inc.
What prevents people from making MIPA happen? (Remember - Stigmatizing people aren’t aware they’re doing it)
Frequently Heard Comments…
This is MIPA enough
Who’s going to fund it?
Well, we already have an advisory group
Wouldn’t a service be a better use of resources
All your meetings are at noon, so we can’t show up
We tried this before
We can’t find the right people
Isn’t that standard a little too high?
This might be over their heads
The “Sandbox”
People won’t show up unless we feed them or give them gas card
We invited them but they haven’t come
We already have one what works at our organization
But you’re high functioning, ours aren’t like that
We have positive people are on our Board/group – but they’re not out
MIPA at the Local Level can affect great change
Photo T. Bogdan 201
From POP+ to MIPA Venita Ray
“POP+ inspired and motivated me to become an advocate. After hearing the stories from the mentors and participants, it changed me for the better. Viewing "How to Survive a Plague," made me have a greater appreciation for the many people that sacrificed and fought for us to reap the benefits of their great efforts.” DB Edwards
Original POP+ Scope: Educate HIV+ individuals about ACA and the marketplace Revised POP+ Scope: Build leadership in the HIV community by training PLHIV how to engage in a broad range of public policy related activities
How we evolved…. • Awarded POP+ grant • Attended AIDS United Training – Denver Principles/MIPA/GIPA • Held Focus Group w/long term HIV+ advocates • Revised POP+ Scope to MIPA • Community-wide Training (Denver Principles/GIPA/Organizing) • Redesigned POP+ Program
Long term HIV advocates • Helped develop POP+ program • Served as advisors, mentors and trainers.
Community-wide MIPA Training
Program Description Six week advocacy training designed by and for PLHIV building on the principles of the Denver Principles, GIPA and MIPA that teaches how to • Become leaders in the HIV/AIDS community • Advocate for issues affecting people living with HIV/AIDS • Get educated about issues that impact people living with HIV/AIDS • Get empowered to use their voice to make a difference and have meaningful involvement with HIV/AIDS organizations
Program • POP+ Overview/Denver Principles/GIPA • HIV 101 – The Basics • Advocacy Panel – Mentors • Affordable Care Act/ Mental Health • Community Organizing • Effective Leadership • Using Your Story as an Effective Advocacy Tool • Movie: “How to Survive A Plague” • Utilized long-term HIV+ advocates as mentors and program trainers
POP+ Requirements • Must be HIV+ • Required Reading - The Four Agreements • Must complete an advocacy project • Participate in 2 non-HIV community projects • Only one absence allowed • Meet with mentors at least twice • Provided gift card to trainers to operationalize MIPA principles • Mileage Reimbursement
Graduation 2014
WAD 2015 Candlelight vigil
POP+ Holiday Party 2014
ADAP advisory committee meeting 2015
MIPA in Action • Graduated 15/ 2014; 14/2015; New Class starts Oct. 2016 • Grads help design program for next class and serve as trainers in new POP+ class • Ryan White Planning Council (8) • New Heterosexual HIV Awareness Task Force to bring awareness to the heterosexual community about HIV. (3) • Started secret Facebook page • Deputy Voter Registrars (4) • Greater Houston Chapter of the Positive Women’s Network (5) • Led the fight against an HIV criminalization bill in state legislature. • Organized a holiday card signing party for Michael Johnson. We mailed 24 cards to him. • HIV is Not a Crime II – 4 graduates attended training academy • Produced play written by grad on HIV Crim w/HBCU
• • • • • • • • •
Lessons Learned Need ally/PLHIV to serve as gateway for others Solicit feedback at every stage Need to always highlight community members Be creative in finding the right level of involvement for all Need constant development and transition of leadership Seek and utilize community input whenever possible Convey ownership Reintegrate graduates as trainers and mentors • Build community and not just programs
The Positive Organizing Project: Meaningfully Involving People Living with HIV/AIDS
Julio Fonseca, Program Manager
AIDS UNITED
Positive Organizing Project
Technical Assistance provider for Positive Organizing Project
www.HIVcaucus.org
Previous POP Highlights Since 2014, AU has funded $295,000 to 12 grantees: • AIDS Partnership Michigan Detroit, MI • Brothers United - Indianapolis, IN • Chicago Women's Project Chicago, IL • Down East AIDS Network Ellsworth, ME • Georgia Equality - Atlanta GA • Housing Works - Brooklyn, NY
• Legacy Community Health Services - Houston, TX • Lifelong AIDS Alliance - Seattle, WA • Louisiana Public Health Institute New Orleans, LA • Mazzoni Center - Philadelphia, PA • Positive Women's Network Philadelphia - Philadelphia, PA • Unified – Detroit, MI
What is Positive Organizing? Mobilizing people living with HIV at the local level to: • Address HIV stigma • Raise HIV education and awareness among community leaders and policymakers • Ensure that meaningful involvement of people living with HIV/AIDS is present at all levels
Year 3 Project Design Two Tracks for the upcoming grant year:
1. Building a MIPA-driven organization: projects focused on concrete activities to strengthen the organizational practices and that operationalize MIPA values at the organizational level. 2. MIPA-driven grassroots projects: projects focused on specific grassroots activities that involve PLWH leadership.
POP Goals • Increase grassroots mobilization • Promote, increase, and strengthen leadership development for people living with HIV • Measurably address stigma • Improve policy, social, and community environment for effective HIV programs • Vigorous engagement of people living with HIV
POP Outcomes • • • •
Positive Leader development Enlivened agencies to expand MIPA internally and externally Expansion of community networks of people living with HIV Sustainability of Projects
Questions? Contacts: • Barb Cardell • [email protected] • Twitter @barbcardell • US People Living with HIV Caucus • www.HIVcaucus.org
• • • • •
• • • • • •
Venita Ray [email protected] 713-299-6123 Twitter @laadyv Legacy Community Health www.legacycommunityhealth.org
Julio J. Fonseca [email protected] Twitter @fonjulio AIDS United www.aidsunited.org
