Behind Bars: I Want to Break Free from this Hatred and Stigma

Kevin Osborne

This interview with Kaniz Fathema Peer counsellor Mukta Akash Bangladesh, from Khulna, Bangladesh is part of the Behind Bars series by Kevin Osborne and the International Planned Parenthood Federation. 

This interview with Mukta Akash Bangladesh, a Kaniz Fathema Peer counsellor from Khulna, Bangladesh is part of the Behind Bars series by Kevin Osborne and the International Planned Parenthood Federation. 

“I was born in Khulna, a city in Bangladesh. In 2002 my parents arranged my marriage with a guy who had just returned from Saudi Arabia. I was in the second year at college. I was married in June 2002, against my will. 

From the first year of our marriage, I noticed that my husband was often unwell. He had frequent fever, aches and stomach trouble. He was not willing to go to a doctor. In 2006 we had a daughter. In the same year he went to India and found out that he was HIV positive. 

After he came back he wanted me and my daughter to be tested for HIV. In April 2006, he took me to the Khulna district hospital for an HIV test, and we found out that I was HIV positive. A few days later we found out that my daughter was positive as well.

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Once my husband and in laws found out that I was HIV positive their attitude towards me changed.

They started to blame me for everything. My husband started to beat me. Although I have never asked him how I become HIV positive or if he knew before that he was HIV positive. Finally they wanted me out of the family and I returned to my parent’s house. After a few days he (my husband) came to my parent’s house and told the neighbours that I was HIV positive. 

Soon my daughter started to become unwell. She was having frequent fever, mouth ulcers and pneumonia.

I took her to the local children’s hospital. I informed the doctor that she was HIV positive. Within minutes the whole hospital knew.

People were coming to see us, as if we were some kind of animal in a cage. Nurses were using gloves all the time. We were hated by everyone.

One day one of the cleaners told me that they were going to burn the beddings once we leave. After hearing this I took my daughter to a private clinic.

In this clinic, once the nurses got to know they started to avoid us. So, the doctor requested that we leave.

He feared that no one will come to his clinic if they heard about us. After returning home, I got in touch with a doctor from India. I used to get ART treatment for my daughter from India.

I started to look for a job but no one was willing to employ me knowing my HIV status.

The situation is really sad. Although I have a job now, I want to break free from this hatred and stigma.

Females are especially criminalised by HIV laws in my country, even considering the social status of women in Bangladesh.

It is breaching our human rights. It is causing spread of HIV/AIDS, and people are not willing to come forward to test because they fear to be criminalized.

I think criminalisation is a disincentive to finding out your HIV status. The criminalization and discrimination that I face are too much to bear.

If one transmits it willingly, then, I think HIV transmission should be a criminal offence. There should be support for HIV positive persons. We need to build more awareness. The number of awareness programs that we are doing is not sufficient at the moment.

Having HIV has changed me.

I used to know nothing about the world. But since I have been struggling for my daughter, I have changed. I know about HIV/AIDS and where to seek help now.

I am humiliated by my status. I hate when people hate me and look at me as if I am something strange. 

The rights of people who know their HIV status should be the same as those who don’t. Because they are both human, and a positive person is also a normal human being”. 

Culture & Conversation Human Rights

Let’s Stop Conflating Self-Care and Actual Care

Katie Klabusich

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.

Over the past year I’ve noticed a spike in articles on how much of the emotional labor burden women carry—at the Toast, the Atlantic, Slate, the Guardian, and the Huffington Post. This category of labor disproportionately affects women of color. As Minaa B described at the Huffington Post last month:

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.”

While her words ring true for me, they are certainly more weighted and applicable for those who don’t share my white and cisgender privilege. As covered at Ravishly, the Feminist Wire, Blavity, the Root, and the Crunk Feminist Collective recently, self-care for Black women will always have different expressions and roots than for white women.

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.

Roundups Politics

Campaign Week in Review: Trump Selects Indiana Gov. Mike Pence to Join His Ticket

Ally Boguhn

And in other news, Donald Trump suggested that he can relate to Black people who are discriminated against because the system has been rigged against him, too. But he stopped short of saying he understood the experiences of Black Americans.

Donald Trump announced this week that he had selected Indiana Gov. Mike Pence (R) to join him as his vice presidential candidate on the Republican ticket, and earlier in the week, the presumptive presidential nominee suggested to Fox News that he could relate to Black Americans because the “system is rigged” against him too.

Pence Selected to Join the GOP Ticket 

After weeks of speculation over who the presumptive nominee would chose as his vice presidential candidate, Trump announced Friday that he had chosen Pence.

“I am pleased to announce that I have chosen Governor Mike Pence as my Vice Presidential running mate,” Trump tweeted Friday morning, adding that he will make the official announcement on Saturday during a news conference.

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The presumptive Republican nominee was originally slated to host the news conference Friday, but postponed in response to Thursday’s terrorist attack in Nice, France. As late as Thursday evening, Trump told Fox News that he had not made a final decision on who would join his ticket—even as news reports came in that he had already selected Pence for the position.

As Rewire Editor in Chief Jodi Jacobson explained in a Thursday commentary, Pence “has problems with the truth, isn’t inclined to rely on facts, has little to no concern for the health and welfare of the poorest, doesn’t understand health care, and bases his decisions on discriminatory beliefs.” Jacobson further explained: 

He has, for example, eagerly signed laws aimed at criminalizing abortion, forcing women to undergo unnecessary ultrasounds, banning coverage for abortion care in private insurance plans, and forcing doctors performing abortions to seek admitting privileges at hospitals (a requirement the Supreme Court recently struck down as medically unnecessary in the Whole Woman’s Health v. Hellerstedt case). He signed a ‘religious freedom’ law that would have legalized discrimination against LGBTQ persons and only ‘amended’ it after a national outcry. Because Pence has guided public health policy based on his ‘conservative values,’ rather than on evidence and best practices in public health, he presided over one of the fastest growing outbreaks of HIV infection in rural areas in the United States.

Trump Suggests He Can Relate to Black Americans Because “Even Against Me the System Is Rigged”

Trump suggested to Fox News’ Bill O’Reilly that he could relate to the discrimination Black Americans face since “the system [was] rigged” against him when he began his run for president.

When asked during a Tuesday appearance on The O’Reilly Factor what he would say to those “who believe that the system is biased against them” because they are Black, Trump leaped to highlight what he deemed to be discrimination he had faced. “I have been saying even against me the system is rigged. When I ran … for president, I mean, I could see what was going on with the system, and the system is rigged,” Trump responded.

“What I’m saying [is] they are not necessarily wrong,” Trump went on. “I mean, there are certain people where unfortunately that comes into play,” he said, concluding that he could “relate it, really, very much to myself.”

When O’Reilly asked Trump to specify whether he truly understood the “experience” of Black Americans, Trump said that he couldn’t, necessarily. 

“I would like to say yes, but you really can’t unless you are African American,” said Trump. “I would like to say yes, however.”

Trump has consistently struggled to connect with Black voters during his 2016 presidential run. Despite claiming to have “a great relationship with the blacks,” the presumptive Republican nominee has come under intense scrutiny for using inflammatory rhetoric and initially failing to condemn white supremacists who offered him their support.

According to a recent NBC News/Wall Street Journal/Marist poll released Tuesday, Trump is polling at 0 percent among Black voters in the key swing states of Ohio and Pennsylvania.

What Else We’re Reading

Newt Gingrich, who was one of Trump’s finalists for the vice presidential spot, reacted to the terrorist attack in Nice, France, by calling for all those in the United States with a “Muslim background” to face a test to determine if they “believe in sharia” and should be deported.

Presumptive Democratic nominee Hillary Clinton threw her support behind a public option for health insurance.

Bloomberg Politics’ Greg Stohr reports that election-related cases—including those involving voter-identification requirements and Ohio’s early-voting period—are moving toward the Supreme Court, where they are “risking deadlocks.”

According to a Reuters review of GOP-backed changes to North Carolina’s voting rules, “as many as 29,000 votes might not be counted in this year’s Nov. 8 presidential election if a federal appeals court upholds” a 2013 law that bans voters from casting ballots outside of their assigned precincts.

The Wall Street Journal reported on the election goals and strategies of anti-choice organization Susan B. Anthony List, explaining that the organization plans to work to ensure that policy goals such as a 20-week abortion ban and defunding Planned Parenthood “are the key issues that it will use to rally support for its congressional and White House candidates this fall, following recent setbacks in the courts.”

Multiple “dark money” nonprofits once connected to the Koch brothers’ network were fined by the Federal Election Commission (FEC) this week after hiding funding sources for 2010 political ads. They will now be required to “amend past FEC filings to disclose who provided their funding,” according to the Center for Responsive Politics. 

Politico’s Matthew Nussbaum and Ben Weyl explain how Trump’s budget would end up “making the deficit great again.”

“The 2016 Democratic platform has the strongest language on voting rights in the party’s history,” according to the Nation’s Ari Berman.