Web Extras for "30 Years of Red Ribbons"
HIV/AIDS-Related Links Suggested by Alumnae Interviewed for our Article
Recommended by Tracie Gardner
The Legal Action Center is the only non-profit law and policy organization in the United States whose sole mission is to fight discrimination against people with histories of addiction, HIV/AIDS, or criminal records, and to advocate for sound public policies in these areas.
LAC provides legal advice and representation to New York State residents who have HIV-related legal problems, especially due to discrimination or breach of HIV confidentiality or testing rights. They also help with problems such as health care proxies, living wills, permanency planning, and government benefits.
There is an FAQ section pertaining specifically to people with questions regarding HIV positive status and the work place.
The Body: The Web’s largest source of HIV and AIDS information.
The Body is a very comprehensive site, with everything from articles by medical experts and advocates including Tracie Gardner. They offer an “Ask the Experts” forum where site users can submit their questions. They also host dozens of bloggers who write about their own experiences living with HIV. The bloggers are an incredibly diverse group, and nearly anyone looking to find a common experience could connect with the stories of one of the bloggers. Additionally, the site includes sections on prevention, treatment, and living.
This organization aims to address increasing HIV rates among women of color aged 13–24 through building partnerships with individuals and organizations that serve and empower adolescents. The site provides access to information, allowing young women to make informed decisions; promotes personal and professional growth; and works to create a collaborative environment for youth-serving organizations.
The mission of AIDS United is to end the AIDS epidemic in the United States. They aim to achieve this goal through national, regional, and local policy/advocacy, strategic grantmaking, and organizational capacity building. With partners throughout the country, they work to ensure that people living with and affected by HIV/AIDS have access to the prevention and care services they need and deserve.
The site has a fact sheet for each state in the country which gives the breakdown on the number of cases in each state, county demographics, gender demographics, and so on.
AIDS Alliance for Children, Youth and Families is a national nonprofit membership organization established in 1994 to give voice to the needs of women, children, youth, and families living with and affected by HIV and AIDS.
The Education and Training page lists numerous programs and conferences to assist care providers, women, and children affected by HIV/AIDS. These programs train participants to become advocates and mentors within communities. Included: The Consumer Leadership Corps Training Program, The Community Leadership Initiative Program, Girls 4 HOPE, VOICES.
The New York State AIDS Advisory Council consists of 17 representatives from the public, educational, and medical communities, local health departments, and nonprofit organizations, including the advocacy and service community.
This site has a very clinical appearance, and features a myriad of resources and links to other resources, including youth outreach, healthcare for the uninsured, funding opportunities and statistics.
GMHC calls itself the world’s first and leading provider of HIV/AIDS prevention, care and advocacy.
This comprehensive site offers information on nearly everything, including how to get tested, how to lower one’s risk factor, and services for men, for women, and for children. GMHC also offers meals to individuals affected by HIV/AIDS, as well as access to mental health services.
Housing Works is committed to ending the twin crises of AIDS and homelessness.
Their mission is to provide people living with HIV/AIDS with access to quality housing, information on HIV prevention and healthcare. They were the first nonprofit in the country to use a self-sustaining model, meaning that the proceeds from their bookstore café, thrift stores, and catering company support the mission of the nonprofit.
Voices Of Community Activists & Leaders (VOCAL) is a statewide grassroots membership organization in New York building power among low-income people who are living with and affected by HIV/AIDS drug use and incarceration, along with the organizations that serve this population, to create healthy and just communities.
More about Tracie Gardner’s work
Watch a 15-minute presentation by Tracie Gardner on “The Politics of HIV Prevention: Black Women and the Fight for HIV/AIDS prevention Justice”
Synopsis: Gardner emphasizes the disproportionate number of black women with HIV relative to the whole population of women with HIV. She focuses on two age groups–young girls/teenagers and women over 45. She makes several suggestions which could relatively easily lower the occurrence of HIV:
1. Talk to women and girls about HIV. She says there is no point in pretending that young girls are not sexually active, and informing them about safer sex practices could dramatically lower their risk of infection.
2. Different branches of social services must communicate with one another. Women must have access to all manner of information, no matter what bureau or institution they go to for that information. There must be HIV/AIDS centers in places where women can get to them.
3. She says that men in the prison system are not receiving adequate care. Prisons must step up their healthcare provisions not only for the inmates, but for the population outside of the system (such as the families men return to after their prison sentences end).
Read Tracie’s article “Mandates Won’t Save Our Kids from HIV — Actual Follow-Through Will” at thebody.org.
Recommended by Mona Bernstein
AIDS.gov has links to federal resources and funding opportunities. There is also a section outlining the uses of new media to contribute, connect, and share information relating to HIV/AIDS.
Project Inform fights HIV and Hep C epidemics by helping individuals to make informed health decisions, advocating for affordable quality healthcare, and promoting medical strategies to prevent new infections. Their events calendar informs visitors when and where they can get involved in/attend fundraisers for the cause.
Technical assistance offered through the site is available to grantees and planning councils.
Kaiser Family Foundation offers all sorts of articles and fact sheets regarding HIV/AIDS, everything from Medicare/Medicaid, uninsured coverage, and women’s health, to minority health.
San Francisco AIDS Foundation offers information on risk, testing, and treatment. Client services include housing support and benefits counseling, as well links to support for minority groups who are at higher risk for infection with HIV/AIDS, including black men and Latinos.
The site has standard info from getting tested to prevention and treatment; has a questions and answer section, fact sheets, and brochures.
Recommended by Aleefia Somji
Avert.org is “the most up to date all the time, and really great for general information about HIV,” says Somji.
The site is a comprehensive and user-friendly website with history of HIV/AIDS, testing prevention, quizzes, games, and stories. Has a section devoted to sex, sexuality, and relationships, and one devoted to HIV/AIDS around the world.
The book The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS, by Elizabeth Pisani is “amazing, one of my favorites. The author is funny and really comes at the whole HIV issue from an epidemiological public health standpoint. Easy for anyone to understand. She’s done a lot with HIV,” says Somji.
Pisani also gave a 2010 TED talk “Sex, Drugs, and HIV—Let’s Get Rational” that provides a look into the logic used by addicts, which is an entirely different logic than is present in the mind of non-addicts. For example, Pisani and her team interviewed users in Indonesia asking them if they knew how HIV was spread. Nearly 100% said through the sharing of needles, yet 3 out of 4 users interviewed shared needles anyway, the reason being that if they were found on the street carrying a needle, they could be taken to jail.
Nawal El Saadawi
The book Woman at Point Zero by Nawal El Saadawi “is also great,” says Somji. “She’s an Egyptian author, its a true story.” The New York Times Book Review said of it, “Saadawi writes with directness and passion, transforming the systematic brutalization of peasants and of women into powerful allegory.”
This 2009 TED talk by Hans Rosling is described as having “new facts and stunning data visuals.”
This article in The Body, is a three-part article that provides a firsthand glimpse of how a small-scale organization called HIPS (Helping Individual Prostitutes Survive) goes into the red light district of DC after hours and distributes what sex workers need to stay safe and stop the spread of HIV. Somji volunteers with this organization.
And the Band Played On (1987 book by Randy Shilts—and 1993 HBO film —about the early days of the AIDS epidemic). “It includes everything—health policy, the people who were tracking it, politics, economics, public health, quick decisions, its amazing. Highly recommended,” says Somji of the film.
More about Somji’s work
Read more about Aleefia Somji’s “HIV Positive” work while a student at MHC and in London.
Wake Up Pune: “This is the website for the HIV Positive campaign and the first HIV organization I volunteered with, where I learned what disruptive theatre is, and where I met some of the most inspiring people ever,” says Somji.
Even More AIDS Resources:
Good magazine’s changing face of AIDS infographic brilliantly illustrates the successes and failures of the world’s fight against HIV/AIDS over the past three decades.
Alumnae Arden O’Connell ’97 and partner Liz Berges ’94 started Coalition for Courage after spending a year working and living in Zimbabwe at an center for HIV/AIDS orphans. The nonprofit now runs a scholarship program, and provides psychosocial support and food aid for the agency. They raise about $100,000 annually for the orphan-care center. Berges reported that one young woman they sponsored for six years has just finished her first year at MHC. She notes that there are two alumnae on the board and several others who work with the nonprofit on various projects.
More Alumnae Fighting HIV/AIDS
- Brooke Nichols ’09
Chelsea McCracken ’09 wrote the following about the work of her classmate, Brooke Nichols:
“Even as a young alum, Brooke has made an impact on HIV research and helped inform policy and funding decisions on both a small and large scale.
From her Mount Holyoke days through her master’s in epidemiology at UMass-Amherst, she spent a total of 6 months in Luderitz, Namibia, doing original research on the spread of HIV. She focused on alcohol consumption and migrant work patterns to better understand the epidemic. Her research concluded that having many informal drinking establishments in an area was linked to higher HIV prevalence, and after hearing her conclusions, the town put into place a program to register and formalize all of these drinking establishments. (She published a paper on her research in AIDS & Behavior: Nichols et al., “Density of Drinking Establishments and HIV Prevalence in a Migrant Town in Namibia,” 2011, in which she acknowledged Mount Holyoke for its financial support.)
She is currently working on her Ph.D. at the Erasmus Medical Center in the Netherlands, where she looks at the math modeling of the HIV epidemic in rural Africa. The first part of her Ph.D. has focused on seeing if “treatment as prevention” or “pre-exposure prophlyaxis” would be cost effective interventions. Because of this model, she was invited to the HIV Modeling Consortium, headed by Imperial College and funded by the Gates Foundation. She published a second paper, in the Journal of Internal Medicine, titled “HIV testing and antiretroviral treatment strategies for prevention of HIV infection: impact on antiretroviral drug resistance.” In October 2011, she also met with policy makers and mathematical modelers from around the world in South Africa to compare models and come to consensus on the similarities and differences among the models. This gave policy makers and major funders the opportunity to give their input on the models, discussing what would help them make funding decisions for different prevention measures.
She is now working on a mathematical model to investigate the potential emergence of drug resistance in Africa if treatment is scaled up. She is doing this in partnership with the World Health Organization, to help inform their policy decisions about antiretroviral therapy.”
- Elizabeth Berges ’94 and Arden O’Donnell ’97Coalition for Courage Helps Kids Affected by AIDS, PovertyBy Heather Baukney Hansen ’94
When I glanced at a toddler standing by the side of the road with a tiny pink Mount Holyoke College T-shirt on, I did a double-take. It was still morning but the strong African sun had already burned off most of the night chill. It was late last July and Elizabeth Berges (’94) and I were walking along a buzzing main street in Norton, Zimbabwe. We were nearly 8,000 miles from it, but here was this compact, powerful flash of South Hadley. I came to learn how closely linked the two—our alumnae and this stricken suburb of Harare—actually are.
It was my first time in Zimbabwe but Berges is a regular. She and Arden O’Donnell (’97) founded Coalition for Courage (C4C) eight years ago, to support vulnerable children in the region. Working with a local non-governmental organization, they sponsor scholars from pre-school through high school and beyond, financing school fees and uniforms, stocking a library, funding food security and teaching vocational skills.
By investing in these bright children with shy smiles and deep wells of desire in their eyes, C4C focuses on a groups that’s been lost amidst global revulsion at their nation’s tyrannical regime. During his 30-year reign, President Robert Mugabe has left widespread collateral damage in his wake. Several years ago, the economy virtually collapsed, taking with it the educational, health and agricultural systems that were once the envy of Zim’s neighbors.
Some staggering statistics represent the profound tears in its once-vibrant fabric: roughly 1.3 million, or one-fifth of all Zimbabwean kids, have lost at least one parent, most of whom died of AIDS. A solid quarter of the population is HIV-positive, and more than half of all new infections are among young people. Most of these are girls, largely because prostitution puts food on the table. This pandemic, compounded by political instability and poverty (more than half the population lives on less than $1 per day and the unemployment rate is somewhere between 70 and 80 percent) makes children, in particular, susceptible to exploitation and abuse. Zimbabwe gets the lowest donor support of any southern African nation for people living with HIV; $4 per person annually; compared to its neighbor Zambia, which receives $184 per person, per year.
But, while the global community stepped back, C4C and a remarkable number of MHC alums, stepped forward.
Berges and O’Donnell started C4C, in part, because when they returned from living there several years ago, they found that the hundreds of people who’d been getting their emailed dispatches from Norton were eager for updates on the kids. “I thought it strange at first because these people hadn’t even met them, hadn’t heard their laughter, hadn’t been there when their parents died,” says Berges. They hadn’t witnessed children sleeping on cold dirt floors sharing a blanket with siblings, crowding around one textbook with 20 others in class, or playing soccer in bare feet so they didn’t ruin the one pair of shoes they preserve for school. They hadn’t seen any of this firsthand, yet they cared.
For O’Donnell, founding C4C was also intensely personal. After her father died of AIDS in 1999, she got a Master’s degree in public health and requested a field placement at an orphan care center with kids who had lost their parents to HIV. “Losing my dad was so hard, I felt lost and alone,” she says. After spending six months in Norton, O’Donnell says, “I fell in love with the place.”
Alongside the tangible support, of school fees and the like, is a more abstract commodity that C4C gives kids: someone who believes in them. “They helped me realize my potential and significance in the world by their support and kindness,” says Jane Mugovi, who was a C4C scholar from sixth grade until she entered college. She is now a sophomore at Mount Holyoke. Mugovi lost both parents before she was 16 but, when searching for role models, she found confident, determined ‘MoHos,’ (as she calls us) all around her. In the essay that got her into MHC, she wrote, “In my view these women believe in the supreme worth of any individual … After learning they were all Mount Holyoke graduates, I knew that I wanted to be part of the community where they learned.”
The MHC/C4C circle is a wide one; some are generous donors with a deep connection maintained through letters, and others have been fortunate enough to have endured sporadic electricity, no running water and the biggest, creepiest spiders I’ve ever shuddered at, to meet some of Norton’s most clever kids.
Bethany Sager (’96) has sent the proceeds of her elementary school’s Hunger Awareness banquet to C4C for many years—a contribution which has grown from $700 to $7,000 in the past decade. She visited Norton in 2007 and was wonderstruck by the experience. “The children we worked with had such happiness in their hearts,” she says. One of Sager’s fifth-grade students was so inspired that, after raising money for two years, he hand-delivered soccer uniforms and balls to Norton.
Bridget McBride (’94) is a registered nurse, but it was a basic knowledge of sewing that helped her make a lasting impact during a two-week visit to Norton in 2010. She spearheaded the “Real Pads for Real Women” project and taught an entrepreneurial group of girls to make durable, reusable sanitary pads (disposable ones are prohibitively expensive there). The girls are now selling their product and reinvesting their profits. The Pads project is part of C4C’s on-going goal to help kids become sustainable adults with safe and healthy work through skills-building.
When asked why MHC women gravitate toward C4C’s work, she says, “Our time at MHC remains special in our hearts because it represents our first taste of the potential for powerful change both as individuals and a group,” and C4C is a chance to effect that change.
While they’ll admit to, at times, feeling frustrated and hopeless at the sheer scope of their undertaking (O’Donnell says working in Zimbabwe can be like “doing social work on the Titanic”) they can’t imagine quitting. “I deeply believe in the resiliency of children and…I am inspired by their will to succeed despite the circumstances of their lives,” says O’Donnell.
Like the MHC women before me, I think often about those little ones who flocked around this summer, under the intense African sun, to hear me read. They’d sit on my lap, hold my hand or sit just close enough to pinch my shirtsleeves. I smile thinking about the pre-schoolers who eagerly showed off their burgeoning English skills. “HowAreYouI’mFine! HowAreYouI’mFine!” they’d shout as Liz or I passed their playground several times a day. My heart is also heavy recalling their burdens, their memories of losing a parent or a sibling, or of sexual abuse suffered.
It’s hard to say why so many Mount Holyoke women are connected to Norton. It may be that we learned long ago on that dynamic campus that we’re not defined by what separates us—be it thousands of miles or oceans of opportunity—but instead by what unites us. A smile, a shoulder to cry on, an aspiration, a need to be acknowledged; these are the pieces of our shared humanity.
— Annotations by Laurel Rhame ’12
October 19, 2011