Love Really Is The Cure: A Review of Elton John's New Book
As global citizens, we exist both independently and interdependently, relying on the judgment of others to ensure that laws and policy accommodate our needs. The particularities of policy in cultures and communities the world over is, of course, flavored by schemas and frameworks that are historically specific to a given region. What is taboo in one space may be commonplace in another—but popularity of framework shouldn't be mistaken for the resolution and addressing of stigma. When stigmas inform political agendas that serve to maintain white patriarchal capitalist systems, marginalized populations are often disproportionately impacted by such policy and governance. It is no coincidence then that the stigma of HIV/AIDS has not only perpetuated the rates of transmission, but has oppressed global populations and demographics most affected by the illness.
This is the argument of Love is the Cure: On Life, Loss, and the End of AIDS, (Little, Brown and Company; 2012) Elton John’s latest book that pleads for global action in helping to end the AIDS crisis. Infection rates continue to climb, he writes, because of the twin swords of stigma associated with the HIV/AIDS and the general public's lack of compassion for people living with it.
[Source: Hachette Book Group/http://www.hachettebookgroup.com/titles/elton-john/love-is-the-cure/9780316219907/#desc]
Doctors first identified HIV almost three decades ago. Why did global governments and policy remain unmoved during the searing onset of the AIDS crisis? John writes in his book that such structural inertia resulted from stigma; he writes about the early 1980s, when epidemiologists first identified HIV/AIDS as the “4H disease” due to its prevalence in “homosexuals, hemophiliacs, heroin users and Haitians.” Known initially as the "gay men's disease"—and to the press as "GRID", or gay-related immune deficiency—the perfect storm of rapid HIV transmission, closely trailed by the fatal onset of seroconversion to AIDS, and stigma against homosexuality translated into global government inaction and death. It took the diagnosis and eventual death of high profile figures like actor Rock Hudson and Ryan White, an HIV-positive boy with hemophilia, for the US government to pay attention.
It wasn’t until 1988 that Congress allocated federal money through the HOPE Act towards AIDS education, prevention and treatment and—one year later—developed the National Commission on AIDS. HIV had been on the CDC’s radar since 1982 but as transmission rates were highest among ostracized populations seen as threatening to values held dear by the historically dominant white heteronormative majority, less attention (and compassion) was lent towards acknowledging the proliferation of a major public health crisis.
Since the 1980s, the Elton John AIDS Foundation (EJAF) has pursued efforts to combat the stigma and transmission of HIV/AIDS. EJAF runs major operations in the United States and the United Kingdom, and mobilized resources in regions of the world with high infection rates such as Malawi, South Africa, Ukraine and Haiti. The stigma associated with homosexuality and rape, while prominent here at home, disproportionately affects access to health care in these countries and creates barriers to HIV/AIDS education, treatment and prevention.
The end result of those barriers paint a grim picture here in the United States. In rural Louisiana, a recent increase in infection and diagnostic rates in African Americans was reported by the Louisiana Public Health Institute (LPHI). In their report, we learn that African Americans in Louisiana accounted for "76% of newly diagnosed HIV cases and 76% of newly diagnosed AIDS" as of 2009.
Interventions do exist, and change can happen with community-based responses. The Southwest Louisiana AIDS Council (SLAC), a grassroots organization and EJAF grantee, has been working to help HIV/AIDS patients in rural Louisiana for over a quarter century, and is led by Executive Director Terry L. Estes. By using a navigator model, SLAC has been able to successfully provide integrated services to their clinical population, of which 74% are African American.
Operating in the rural South has been challenging for SLAC, and further complicated by current Governor Bobby Jindal’s decision to privatize public hospitals. With no public access to health care in their region, SLAC is working against both an ongoing national debate about health care and the stigmas and stereotypes surrounding HIV/AIDS in the American South.
"There's a lot of judgment that it’s a 'gay disease,'" says Estes, a hauntingly familiar refrain that echoes John’s accounts from the 1980s. She later adds that, in her community, "there's a lot of institutionalized racism that seems present."
The racism and homophobia are further compounded by archaic and misinformed stereotypes about Southerners—ones that Estes credits with creating even more obstacles for care, treatment and prevention.
“I feel like we have to work a little bit harder to get that credibility,” she says.
Rural locations face exceptionally specific challenges when providing HIV/AIDS care. Yet in major cities like Washington, DC, John writes that "the trend lines of the AIDS epidemic trace the contours of long-standing economic and racial inequities in America." Between the stark geographic differences of these cities lives a similar battle: stigmas that pervade race and class. With 3 percent of Washington, DC’s population testing HIV-positive and African Americans accounting for a disproportionate number of those infected, it is clear that the disease does not discriminate—but what does are the institutions in the very city that is host to "one of the worst AIDS crises in the Western Hemisphere."
Similarly, New York City’s infection rates reflect historically stigmatizing trends. As of 2011, the New York State HIV/AIDS Surveillance Annual Report describes astonishingly high rates in the city alone. Over 100,000 residents are living with HIV/AIDS and 70 percent of those infected are men. Of that 70 percent, nearly 45 percent are African American. The highest rates of infected populations include men who have sex with men (MSM; includes bisexual men) and injection drug users (IDU). African American men account for over 45 percent of all late stage diagnoses with the highest rates among MSM. While nine percent of all late stage HIV/AIDS cases are in heterosexuals, it is clear that historically oppressed and marginalized populations are disproportionately affected and infected.
There is a sense of urgency in eradicating the HIV/AIDS epidemic and John’s voice—in his pleas for compassion and the use of human rights frameworks to deconstruct the stigmas that serve to perpetuate this public health crisis—is reflective of how the disease impacted both his own life and the lives of many people around him. It is easy for one to understand the necessity of ending human rights violations when it is relative to their own lives. But in his book and in life John challenges the status quo—the white patriarchal capitalist structures. He calls for people to see past their privilege and beyond the values that have long held marginalized populations in subordination. The perpetuation of stigmas in any community speaks to the judgments bestowed on "the Other" as perceived by the dominant group and teaching people to unlearn is no easy task. However, it is one that John takes head-on and his words echo the truth not just about AIDS, but about inequality in general: love is the cure.