As Ebola virus disease (EVD) continues to spur public attention, AIDS activists have drawn important parallels between the current Ebola outbreak and the history of the HIV pandemic.
The history of HIV has shown how social, economic, and health care injustices drive epidemics, and how this is especially compounded by racial/ethnic inequalities. The most pernicious illustration of this is how various criminalization efforts—the “war on drugs,” targeting of sex workers, detention and deportation of undocumented immigrants, criminalizing HIV transmission, anti-homosexuality laws, etc.—are disproportionately enforced against minority communities of color here and around the world, and how these efforts serve to fuel the epidemic, increase stigma, and (attempt to) silence voices in these communities.
So while fear and paranoia about Ebola permeate public conversations, and while media outlets and politicians attempt to exploit this to their ends, what tends to get overlooked is the blatant truth that Ebola is an illness that is right now predominantly experienced—in all its complexity—by people of color in three particular countries: Liberia, Sierra Leone and Guinea.
But it is not enough to outline these three countries in broad terms, rather we need to appreciate that Ebola is an illness that hits individual communities and families—where caregivers contract it as they try to provide care and respite to their ill loved ones; and where health workers contract it for trying to do their job, often without adequate resources and support.
While the focus tends to be one-sidedly on the need to contain, control, and eliminate Ebola, there are real people and real communities — with their own hopes, fears, and desires — living (and dying) with Ebola. We need to listen to these voices and act together in solidarity with them — not react to/for them.
On the other hand, Ebola cases here in the US quickly divulged to personalized blame and stigma. It is horrifying to see how otherwise anonymous people are made into objects for media outlets, government officials, and the public at large to scrutinize over, and often to vilify. It brings to mind the early days of the AIDS crisis when people with AIDS were routinely and publicly blamed and made into scapegoats. To put it plainly, this blaming and shaming is an exclusionary act of social and political violence.
It was enraging to hear accounts, tinged with racism, which vilified and condemned Thomas Eric Duncan. As the history of AIDS reminds us, it ultimately is not Ebola that silences Duncan’s life and legacy, rather it is the violence inherent in governmental and societal blaming, shaming, indifference, and eventual amnesic trivialization. For the toxic effect of this violence does not end with Duncan’s death. Duncan’s fiancée — Louise Troh — was forced into quarantine and then homelessness after her apartment was destroyed, and was excluded in the hospital settlement case.
It is also of interest that the two nurses—Nina Pham and Amber Vinson—who contracted EVD while caring for Duncan in Dallas are nurses of color. Here in Philadelphia we have a number of West African immigrant communities, especially Liberian. Not only are these communities intricately affected by Ebola events in the US and in West Africa, health workers of color are also more likely to be involved in helping provide care to these communities here.
Likewise, we should recognize the number of West African nurses and other health workers who are helping provide health care for people throughout our region, and who are now facing stigma from their employers, co-workers, or the public. The rise in stigmatizing attitudes and policies directed at immigrants from Liberia, Sierra Leone, and Guinea echo the stigmatizing attitudes and policies directed at Haitians, gay/queer/trans folks, drug users, and sex workers during the HIV pandemic. Given our general lack in the US of a good grasp of world geography, it tends to be that all of West Africa (indeed all of Africa) gets lumped into this stigmatization. West African communities here are fighting this stigma, for example holding an anti-Ebola/anti-discrimination protest on Oct. 25 in Southwest Philly.
In general, the fear and stigma associated with Ebola highlights the need to have health systems that truly focus on the care of all individuals and eliminate all barriers to care. Here in Pennsylvania (and elsewhere) it reinforces the call for “health care as a human right” and the need for publicly supported universal access for all people to quality, affordable and dignified care.
Lastly, discussions around isolation, quarantine, and surveillance echo similar discussions in the HIV pandemic. A dangerous tendency with these discussions is that by focusing solely on the “isolation” of infectious pathogens we lose sight of the person who is living with it. This leads to rather casual conversations about the explicit control of other people’s bodies and lives in a way that serves to dehumanize and silence the person themselves.
All of this ties to last year’s 30th anniversary of the Denver Principles, the milestone statement that embodies the AIDS self-empowerment and self-health movement. The Denver Principles begin by stating: “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’”
Despite the different particularities of the Ebola outbreak, the Denver Principles help point to how we might challenge the narrow call for a “more contained” response, and instead fight for a more humane response that truly values the dignity, care, and voices of those most affected. We cannot be silent in this collective fight, for it truly is the Silence — and silencing — that equals Death.
John Barbieri ([email protected]) is an adjunct faculty at Thomas Jefferson University School of Nursing. He is a member of Rebellious Nursing (facebook.com/RebelliousNursing), ACT UP Philadelphia (actupphilly.org), and Put People First (putpeoplefirstpa.org).