Usually when we think of the HIV pandemic, we think of one big health crisis, and a lot of "mini-pandemics" under its umbrella, many of which are based in social "ills" of some sort. Crises in immigration. Under-resourced or even failing health care systems. Millions of kids who have or will lose their parents to AIDS. But we too infrequently think of HIV as part of *another* pandemic - that of the universal and seemingly un-abating crisis of gender-based violence (GBV) And, more to the point here, we (I understand this "we" to be quite broad: activists, policymakers, researchers, academics, health care providers, teachers, etc.) - "we" writ large - have not paid close enough attention to the ways these social and health crises are linked. HIV and gender-based violence, and violence against women in particular, are mutually reinforcing. In too many circumstances, they invent each other, as cause and consequence.
Usually when we think of the HIV pandemic, we think of one big health crisis, and a lot of "mini-pandemics" under its umbrella, many of which are based in social "ills" of some sort. Crises in immigration. Under-resourced or even failing health care systems. Millions of kids who have or will lose their parents to AIDS. But we too infrequently think of HIV as part of *another* pandemic – that of the universal and seemingly un-abating crisis of gender-based violence (GBV) And, more to the point here, we (I understand this "we" to be quite broad: activists, policymakers, researchers, academics, health care providers, teachers, etc.) – "we" writ large – have not paid close enough attention to the ways these social and health crises are linked. HIV and gender-based violence, and violence against women in particular, are mutually reinforcing. In too many circumstances, they invent each other, as cause and consequence.
UNAIDS now estimates that there are 17.7 million women living with HIV. The World Health Organization (WHO) and other groups estimate that on a global level, one in three women will be beaten, coerced into sex or otherwise abused in her lifetime. But what we don't necessarily know is what's the link between these statistics and what's the relationship between these crises? And maybe there are a few more direct questions that need to be posed: 1) why don't we know these things? And 2) who's not asking the right questions to uncover the answers?
Twenty-five years into the pandemic, I'd like to know answers to these questions, as would many people. But (is it really 2006?) we still must continue to make the arguments that these are important and legitimate human rights and public health questions to pose.
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The HIV and GBV landscape has been marked by failures – failures to develop human rights and gender-equity based policy, especially when it might have been simple to create or implement. One current failure: Throwing PEPFAR (the President's Emergency Plan for AIDS Relief) money into combating gender-based violence without clear criteria for programs and goals for results – and for results that are grounded in empowerment of women and the eradication of gender inequality. When we hear that anti-violence against women funds are going to organizations that are promoting marriage and strengthening family as means of HIV and violence prevention – especially in light of transmission in contexts of domestic violence, we know we are facing a breakdown.
Critical in this list of policy failures has been the promotion of abstinence-only-until-marriage as a means of HIV prevention. Period. For young people, for women, for LGBT people. These polices are coercive, discriminatory and are, at their roots, grounded not in sound public health practice, but moral judgments. And while many of us talk about how women are subjected to sexual assault inside and outside marriage and are not always able to negotiate safer sex, we have also let go of one principle that fundamentally makes abstinence problematic: we don't consistently speak of how it creates terror about sex, how it teaches that sex is a bad thing, dangerous, lethal. Twenty five years ago, we might have spoken of sexual liberation in this discussion. I miss that analysis.
On a global level, activists have been slow to link gender-based violence and violence against women (VAW), as well. HIV organizations have been slow to address experiences of women, and women's organizations have been slow to take on HIV. There's fear and prejudice all around: sexism, fear of feminism, fear of HIV and HIV+ people, fear of being overwhelmed by taking on "additional causes", fear of resources being stretched too thin, fear of fragmentation in coalitions, etc.
The Center for Women's Global Leadership (CWGL) recently released Strengthening Resistance: Confronting Violence Against Women and HIV/AIDS, a report which highlights critical political challenges and innovative strategies used by activists worldwide as they respond to the links between the two pandemics. Activists in both VAW and HIV/AIDS communities are beginning to generate creative and strategic advocacy that is grounded in ideas and practices of resistance: resistance to the virulence of HIV transmission, resistance to pervasive experiences of violence, resistance to governmental complacency and resistance to sexist and discriminatory attitudes and prejudices. We can only hope policymakers follow suit. Quickly.
It's time for a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities.
As a chronically ill, chronically poor person, I have feelings about when, why, and how the phrase “self-care” is invoked. When International Self-Care Day came to my attention, I realized that while I laud the effort to prevent some of the 16 million people the World Health Organization reports die prematurely every year from noncommunicable diseases, the American notion of self-care—ironically—needs some work.
I propose a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities. How we think about what constitutes vital versus optional care affects whether/when we do those things we should for our health and well-being. Some of what we have come to designate as self-care—getting sufficient sleep, treating chronic illness, allowing ourselves needed sick days—shouldn’t be seen as optional; our culture should prioritize these things rather than praising us when we scrape by without them.
International Self-Care Day began in China, and it has spread over the past few years to include other countries and an effort seeking official recognition at the United Nations of July 24 (get it? 7/24: 24 hours a day, 7 days a week) as an important advocacy day. The online academic journal SelfCare calls its namesake “a very broad concept” that by definition varies from person to person.
“Self-care means different things to different people: to the person with a headache it might mean a buying a tablet, but to the person with a chronic illness it can mean every element of self-management that takes place outside the doctor’s office,” according to SelfCare. “[I]n the broadest sense of the term, self-care is a philosophy that transcends national boundaries and the healthcare systems which they contain.”
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In short, self-care was never intended to be the health version of duct tape—a way to patch ourselves up when we’re in pieces from the outrageous demands of our work-centric society. It’s supposed to be part of our preventive care plan alongside working out, eating right, getting enough sleep, and/or other activities that are important for our personalized needs.
The notion of self-care has gotten a recent visibility boost as those of us who work in human rights and/or are activists encourage each other publicly to recharge. Most of the people I know who remind themselves and those in our movements to take time off do so to combat the productivity anxiety embedded in our work. We’re underpaid and overworked, but still feel guilty taking a break or, worse, spending money on ourselves when it could go to something movement- or bill-related.
The guilt is intensified by our capitalist system having infected the self-care philosophy, much as it seems to have infected everything else. Our bootstrap, do-it-yourself culture demands we work to the point of exhaustion—some of us because it’s the only way to almost make ends meet and others because putting work/career first is expected and applauded. Our previous president called it “uniquely American” that someone at his Omaha, Nebraska, event promoting “reform” of (aka cuts to) Social Security worked three jobs.
“Uniquely American, isn’t it?” he said. “I mean, that is fantastic that you’re doing that. (Applause.) Get any sleep? (Laughter.)”
The audience was applauding working hours that are disastrous for health and well-being, laughing at sleep as though our bodies don’t require it to function properly. Bush actually nailed it: Throughout our country, we hold Who Worked the Most Hours This Week competitions and attempt to one-up the people at the coffee shop, bar, gym, or book club with what we accomplished. We have reached a point where we consider getting more than five or six hours of sleep a night to be “self-care” even though it should simply be part of regular care.
Most of us know intuitively that, in general, we don’t take good enough care of ourselves on a day-to-day basis. This isn’t something that just happened; it’s a function of our work culture. Don’t let the statistic that we work on average 34.4 hours per week fool you—that includes people working part time by choice or necessity, which distorts the reality for those of us who work full time. (Full time is defined by the Internal Revenue Service as 30 or more hours per week.) Gallup’s annual Work and Education Survey conducted in 2014 found that 39 percent of us work 50 or more hours per week. Only 8 percent of us on average work less than 40 hours per week. Millennials are projected to enjoy a lifetime of multiple jobs or a full-time job with one or more side hustles via the “gig economy.”
Despite worker productivity skyrocketing during the past 40 years, we don’t work fewer hours or make more money once cost of living is factored in. As Gillian White outlined at the Atlantic last year, despite politicians and “job creators” blaming financial crises for wage stagnation, it’s more about priorities:
Though productivity (defined as the output of goods and services per hours worked) grew by about 74 percent between 1973 and 2013, compensation for workers grew at a much slower rate of only 9 percent during the same time period, according to data from the Economic Policy Institute.
It’s no wonder we don’t sleep. The Centers for Disease Control and Prevention (CDC) has been sounding the alarm for some time. The American Academy of Sleep Medicine and the Sleep Research Society recommend people between 18 and 60 years old get seven or more hours sleep each night “to promote optimal health and well-being.” The CDC website has an entire section under the heading “Insufficient Sleep Is a Public Health Problem,” outlining statistics and negative outcomes from our inability to find time to tend to this most basic need.
We also don’t get to the doctor when we should for preventive care. Roughly half of us, according to the CDC, never visit a primary care or family physician for an annual check-up. We go in when we are sick, but not to have screenings and discuss a basic wellness plan. And rarely do those of us who do go tell our doctors about all of our symptoms.
I recently had my first really wonderful check-up with a new primary care physician who made a point of asking about all the “little things” leading her to encourage me to consider further diagnosis for fibromyalgia. I started crying in her office, relieved that someone had finally listened and at the idea that my headaches, difficulty sleeping, recovering from illness, exhaustion, and pain might have an actual source.
Considering our deeply-ingrained priority problems, it’s no wonder that when I post on social media that I’ve taken a sick day—a concept I’ve struggled with after 20 years of working multiple jobs, often more than 80 hours a week trying to make ends meet—people applaud me for “doing self-care.” Calling my sick day “self-care” tells me that the commenter sees my post-traumatic stress disorder or depression as something I could work through if I so chose, amplifying the stigma I’m pushing back on by owning that a mental illness is an appropriate reason to take off work. And it’s not the commenter’s fault; the notion that working constantly is a virtue is so pervasive, it affects all of us.
Things in addition to sick days and sleep that I’ve had to learn are not engaging in self-care: going to the doctor, eating, taking my meds, going to therapy, turning off my computer after a 12-hour day, drinking enough water, writing, and traveling for work. Because it’s so important, I’m going to say it separately: Preventive health care—Pap smears, check-ups, cancer screenings, follow-ups—is not self-care. We do extras and nice things for ourselves to prevent burnout, not as bandaids to put ourselves back together when we break down. You can’t bandaid over skipping doctors appointments, not sleeping, and working your body until it’s a breath away from collapsing. If you’re already at that point, you need straight-up care.
Plenty of activities are self-care! My absolutely not comprehensive personal list includes: brunch with friends, adult coloring (especially the swear word books and glitter pens), soy wax with essential oils, painting my toenails, reading a book that’s not for review, a glass of wine with dinner, ice cream, spending time outside, last-minute dinner with my boyfriend, the puzzle app on my iPad, Netflix, participating in Caturday, and alone time.
My someday self-care wish list includes things like vacation, concerts, the theater, regular massages, visiting my nieces, decent wine, the occasional dinner out, and so very, very many books. A lot of what constitutes self-care is rather expensive (think weekly pedicures, spa days, and hobbies with gear and/or outfit requirements)—which leads to the privilege of getting to call any part of one’s routine self-care in the first place.
It would serve us well to consciously add an intersectional view to our enthusiasm for self-care when encouraging others to engage in activities that may be out of reach financially, may disregard disability, or may not be right for them for a variety of other reasons, including compounded oppression and violence, which affects women of color differently.
I hear the term self-care a lot and often it is defined as practicing yoga, journaling, speaking positive affirmations and meditation. I agree that those are successful and inspiring forms of self-care, but what we often don’t hear people talking about is self-care at the intersection of race and trauma, social justice and most importantly, the unawareness of repressed emotional issues that make us victims of our past.
The often-quoted Audre Lorde wrote in A Burst of Light: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”
But as we continue to talk about self-care, we need to be clear about the difference between self-care and actual care and work to bring the necessities of life within reach for everyone. Actual care should not have to be optional. It should be a priority in our culture so that it can be a priority in all our lives.
In a time of great strife, in which those who seek to divide us have a very large platform, I remember that these things are all true:
You can oppose an illegitimate or unnecessary war, and still individually and collectively honor and love the troops that serve.
You can honor and love the troops that serve, but protest the ways in which war is waged and abhor the behavior of individual soldiers who abuse human rights and dehumanize the civilians in a population. You can honor and love and support the troops that serve but still work to change the systems, and hold politicians and individuals responsible for crimes they perpetrate.
You can honor and love any and all public servants—as I do deeply—but still abhor systemic problems in civil services that lead to racist behaviors and outcomes (or those based on class, immigrant status, gender, ability, or any other basis for discrimination).
You can honor, love, and respectpolice, but abhor the militarization of our police forces; racial and ethnic profiling; abuses of fines, fees, and arrests that both target and most adversely affect the poorest individuals; and the growing dependency of the budgets for police forces based on fines drawn from those who can least afford it. You can honor, love, and respect the police, but still understand why there is a great level of distrust of policing in some communities. You can honor, love, and respect the police, but still recognize real abuses of power by individuals or groups among them, and seek to hold those responsible accountable for their actions.
You can honor and love police for putting their lives on the line for public safety, but recognize the very deeply legitimate concerns of movements—like Black Lives Matter, immigrants’ rights groups, women’s rights groups, LGBTQ rights groups, and others for whom policing often is not about public safety, but is itself a source of fear—because law enforcement is and has been too often used against these groups in ways that are disrespectful, demeaning, and sometimes deadly.
You can honor, respect, and love the police, but support the work of Black Lives Matter, immigrants’ rights groups, women’s rights groups, and LGBTQ rights groups, and defend them against blame for the behavior of someone acting in their name who is not actually acting in their name at all.
You can honor and respect the work of prosecutors, judges, and other law enforcement officials, but recognize when the systems in which they are working are not working for the people or to promote justice, or when individuals within those systems operate more on bias than on integrity.
You can protest and advocate for change in any and all of these systems without dishonoring the individuals within them. Indeed, by protesting and seeking to make them better, you make the world better for those within and outside of law enforcement and, hopefully, promote a more universal justice.
You can and we all must honor and treasure the freedoms of speech and of assembly, and abhor violence, while also recognizing that sometimes it is perpetrated by people, like veterans, whose own needs for health care, love, and honor have not been met by the country that sent them to war, or by people who feel so alienated that they—wrongly but nonetheless—resort to violence.
You can be confused by or even irritated by something you don’t understand, but it is on you, not others, to try to understand it. As Proverbs 4:7 says, “The beginning of wisdom is this: Get wisdom. Though it cost all you have, get understanding.” Read, discuss, challenge yourself. Try to open yourself up to what may seem like radical ideas. Make yourself vulnerable to learning. If you don’t understand the movement for Black lives, women’s rights, LGBTQ rights, immigrant rights, then listen to the very people fighting for their rights in order to better understand them. You may have started from a very different place than they do; you may stand in a very different place today. The issues may seem alien at first. But just because you don’t have cancer does not mean cancer does not exist. Try hard to understand why there is distance, what you don’t understand, and what you can—what we all must—do to narrow that distance in understanding each other.
We can love, honor, and respect each other and still recognize and raise awareness of our collective weaknesses. Indeed, that is the essence of progress and of democracy. Don’t fight it. Try to help it along.
People are human and therefore flawed. The systems we create also are therefore often flawed. We need mutual love and respect, along with vigorous debate and sometimes protest, to right the wrongs that are the inevitable result of our flawed selves and our flawed systems.
Love, honor, respect, and accountability: We need them all. Accountability, along with freedom, is the essence of a functioning democracy and part of the struggle for justice. The right to speak, the right to protest, the right to agitate for changes in systems that are flawed because we are all flawed in some way. The right to make things better.
Speaking up, speaking out, changing systems… This is not disrespect or lack of love and support. It is the essence of the struggle for the rights of all people. It is democracy. Some will tell you that in speaking out you are being disrespectful, but the opposite is true. You are respecting the many who have fought and given their lives—and who continue to be placed in harm’s way—on behalf of all of us so that we may all exercise our basic freedoms.
Let’s embrace the struggle. We can love, honor, respect police and other public servants, politicians, soldiers, and ourselves, and still work to hold them and ourselves accountable. These things are all true. I can hold these true simultaneously.
Can we all hold these things true simultaneously? I hope so, because I fear our failure to do so will only result in more violence and hatred.