October/November 2018
Before Celebrities Spoke of AIDS Desert AIDS Project (D.A.P.) marks its beginning in 1984, the year it received official non-profit status. It’s an important milestone and represents the dedication and true grit of the founders who came together to help members of their community die with dignity through compassionate hospice care. But for founding member and first executive director George Sonsel, D.A.P. was born five years earlier.
It’s hard for most of us to imagine a situation where on any given day we could be denied medical services. But that’s the reality faced by Trans/Gender Non-Conforming (NGNC) individuals according to the 2015 Inland Empire Transgender Wellness Profile survey. One in four respondents agreed or strongly agreed that they will be refused medical services because they identify as transgender, and almost 60 percent agreed or strongly agreed that they will be treated differently by medical personnel due to being transgender.
“It was a very difficult thing to get this agency off the ground,” he said. Back in 1979, Palm Springs wasn’t nearly the gay travel destination it is today, although gays were starting to buy up old motels and resorts in earnest. According to Sonsel, there were about ten gay owned establishments at the time, and the vision of an international gay destination was burgeoning. During season, the city had the highest concentration of gays in California. These and other business owners, about 30 gay men and women, knew that because their interests were aligned, they would be stronger together. They formed the Desert Business Association, which is still around today. The unassuming name was purposely created to protect its members from homophobic reprisals by cloaking their common bond. George Sonsel was already well established in Palm Springs as a director of social work and other related roles at area hospitals and with the County of Riverside. He had made his favorite vacation destination his home and was starting a private psychology practice on the side. But then then his friends and clients started dying horrible, sudden deaths, and doctors were baffled as to why. That first year alone, Sonsel and his former partner lost 30to-35 friends. “Our friends kept dying in front of our eyes,” said Sonsel. “We no more than acknowledged their passing than we began to prepare for the death of another.” This went on for about three years until Sonsel and his associates, made up of infectious disease doctors, oncologists, and the director of nurses at Desert Hospital (now called Desert Care Network) started accepting that this would not be a short epidemic. For those who had access to government records, there was enough public health data now to make informed assumptions about the seriousness of the epidemic. This was before the Internet, and information traveled a lot slower
Providing Gender Affirming Care
if there was no community to spread the message or demand a dialogue. Considering President Reagan would wait until the spring of 1987 to utter the word AIDS publicly, and never provided supportive leadership, American media and society itself was given free reign to ignore the suffering of AIDS patients and their loved ones. And as White House communications director Pat Buchanan called AIDS “nature’s revenge on gay men,” outright hostility towards those suffering was normalized. The panic caused in many hospitals by lack of information and the seemingly random nature of the infection perpetuated stigma by numerous medical staff across the country. Many who were suffering from AIDS avoided going to the hospital out of fear of how they would be treated. One of those motel owners called Sonsel and his partner one day, asking if they could come quickly. “He’s dying,” their friend said. A male couple who was staying at the motel had come to Palm Springs so that one of them could die. They were too afraid to go to the local hospital after reading about how it was mistreating AIDS patients. Despite urgings to accept care, they would not relent. Because of Sonsel’s state credentials, he was able to declare the dying man a threat to himself or others (aka 51/50) and had him forcibly transported to that very hospital, where the man died shortly after. The man’s partner left and went back to whatever part of the U.S. they came from. This became commonplace for George Sonsel, his partner, and their network of friends and colleagues. These are the people we now call community activists, humanitarians, and heroes. Sonsel has a much more sobering viewpoint. Continued on back
Viewed through even the narrow focus of a local lens that translates to thousands of marginalized individuals. A recent study published by The Williams Institute estimated that 0.6% of the U.S. population is TGNC, putting the 2015 TGNC population of Riverside County at approximately 14,000 people. “Although 93 percent of TGNC survey respondents indicated that they have some form of health insurance, [they] may not use it as needed due to inadequacy of providers, lack of services available, or strongly agree that not enough healthcare providers are adequately trained to care for TGNC people,” says Anthony Velasco, an Adult-Gerontology Primary Care Nurse Practitioner who has worked at Desert AIDS Project since 2016. “D.A.P. recognizes that given the association of negative health outcomes with stigma and discrimination TGNC people, particularly transgender women and transgender people of color, experience severe health disparities across a number of outcomes, including HIV.” Continued on back
New Emergency Generator In After 3 Year Wait Our Emergency Preparedness Generator was installed in July, after three years of construction and electrical upgrades, including new transformer and a new utility yard to house it. This generator will enable us to serve the community and our clients in the event of a natural disaster or other event. The behemoth is FQHC compliant and satisfies the City of Palm Springs General Plan’s Safety Element for Disaster Preparedness, Response, and Recovery. This project was funded through capital improvement grants from the U.S. Housing and Urban Development Community Development Block Grant (CDBG) Program, administered Continued on back
Celebrities
Continued from front
“We were taking care of our friends and so it didn’t feel like we were doing anything tremendous,” he said. “We were just doing what we felt we needed to do what we should do.” Those early years (1979-1984) were largely without any information for those like Sonsel who were working to save their communities as health care workers and advocates. Today’s roadmap for community health that was created during the first years of the AIDS crisis was carved out by people who were too busy helping others to focus on their own broken hearts, even as the pangs of survivor’s guilt would taunt them. “At times, I imagined my experience to feel like standing in the midst of a forest fire, somehow not personally consumed in flames, trying to extinguish an overwhelming inferno while watching in fear, desperation, and all-consuming guilt over your comrades being consumed or, at best, severely scarred for life by the flames,” said Sonsel. There was no social safety net in place to absorb the cost of caring for those suffering with AIDS, and many of the early
founders spent so much time caring for the sick and dying that they had to leave the careers that were supporting them. Also, it was common for doctors and nurses to avoid administering care out of fear of catching the mystery illness and giving it to their families. The idea to establish non-profit status came from the desire to continue the vital work to care for the sick, but it took years. According to Sonsel, they had no hope of paying an attorney to assist them, but by doggedly pursuing and pleading with the Secretary of State’s office, eventually, they succeeded in 1984. It was around that time that he accepted a position at AIDS Project Los Angeles. The co-founding of amfAR in 1983 by Elizabeth Taylor, and the tragic loss of Rock Hudson two years later mark a turning point for many. Celebrities started talking about the need for compassion, research, and the fundraising that was required to pay for this mission. Thank goodness for them. But our celebrity icons were not the first ones to roll up their sleeves to fight AIDS. In the late 70s, unsung heroes across our country were doing what the government and many in the medical community would not. And many
Generator
Continued from front
by the County of Riverside Economic Development Agency (EDA), the City of Palm Springs, and the City of Palm Desert. DAP also contributed funds to install security lights around the utility yard. Through grant applications prepared by Senior Grant Writer Laura Nachison and an additional award from the County of Riverside, the total amount of CDBG grant funding obtained over three years was sizeable.
Gender Affirming Care Continued from front
Because D.A.P. has identified these health disparities, and has developed an understanding of the specific needs of TGNC individuals, “it has taken additional steps to provide our TGNC clients a trans-affirmative environment where patients can feel respected and treated with dignity, as well as providing them with an opportunity to engage in an ongoing relationship with a primary care provider and/or a mental health provider to address the full spectrum of health and wellness needs,” adds Velasco. Some of those steps include training frontline staff on the diverse sexual orientations and gender identities of D.A.P. clients, providing non-gendered bathrooms, being mindful when using gender pronouns, and email signatures that indicate a staff member’s own gender pronouns. In addition to being able to access the dozens of services D.A.P. provides to all their clients, TGNC individuals also have access to hormone therapy. And Velasco says the organization is in the process of reviving support groups for individuals who are transitioning. “We envision the support group as a means of socialization for TGNC individuals, but also a venue to talk about trans-specific issues such as chest binding, hormone therapy issues, expectations after surgery, etc. There have also been discussions on having a TGNC Health Navigator. Although the role of the Navigator is not quite defined yet, I see it as a combination of peer support and case management.” D.A.P. also recognizes the importance of providing their staff with ongoing training and education, as well as creating opportunities for advancement that will increase the number of trained providers and staff who understand the complex issues faced by TGNC individuals. For example, the World Professional Association for Transgender Health (WPATH) is starting to certify health professionals who work with the TGNC community. Velasco is
times it cost them their ability to support themselves financially. George Sonsel survived that forest fire he described and is living contentedly with his husband Sven in the EU. “Today my heart and soul feel at ease and that initial sense of urgency and desperation has been calmed,” he said. “That foundation we worked so hard to construct held and persevered.” Bringing an end to the HIV/AIDS epidemic remains the top priority for D.A.P. But the organization has learned a lot in 34 years and it wants to respond to the unmet needs of its neighbors struggling to find health and a path out of poverty, regardless of their HIV status. The organization is in the middle of it’s largest expansion yet. By 2020 it will care for twice the number of patients and clients as today, increasing from 4,000 to 8,000. This will add more than 20,000 square feet to its campus footprint and includes 60 additional housing units. Please visit dapvision2020.org or desertaidsproject.org to find out more.
Housing Infusion for PLWHA In September, the Housing Authority County of Riverside awarded D.A.P. a sizeable grant for FY 18-19 HOPWA (Housing Opportunities for Persons With AIDS). The funding request was prepared and submitted by Grant Writer Janell Rickey to support our Housing Assistance Services. This supports emergency, temporary, short-term, and permanent housing for our clients in need.
among a group of staff members at D.A.P. who have been working to qualify as the first providers certified by WPATH. Certification includes a minimum of 50 hours of credit (achieved through activities such as WPATH Foundations Courses, a mentorship, attending workshops and community events), a final exam, license, and becoming board certified in an applicant’s specialty. It’s projected that the first examination will be administered in 2019. And Velasco notes that D.A.P. has taken a proactive approach to developing partnerships with TGNC organizations to create and grow programs and services by and for TGNC individuals. “Community involvement ensures acceptability, appropriateness, and the relevance of our interventions, programs, and services [and] strong partnerships with TGNC organizations will also allow TGNC people to be the main voice for such programs,” he says. In keeping with that philosophy, D.A.P. has hosted the Transgender Day of Remembrance, Transgender Day of Visibility, Transgender Pride, Transgender HIV Testing Day, and a Trans Holiday Party, among other efforts. “We also understand that one size does not fit all,” says Velasco. “Interventions and programs are most effective when we incorporate racial and ethnic issues that contribute to risks, and issues of stigma and discrimination that are specific to the TGNC community. D.A.P., through our Community Health and Medical Departments, educates and provides services and care through a broader context of health and wellness by approaching TGNC-specific issues not only of the individual, but also recognizing the role of families, social networks, schools, communities, and organizations where TGNC people live, work, and play. We make an effort to go beyond what’s convenient and bring education and services to TGNC people in their neighborhoods and communities.”