First Person

Would You Believe Me If I Said I Was Starving?

Two weeks ago, I was reading a food blog with instructions on how to throw better dinner parties. In the grand tradition of lifestyle bloggers, the author promised me that everything would be much better if I just stopped trying so hard. He included a recipe for baked ham, and suggested that hosts everywhere should just chill out and let guests slice their own sandwiches. Play it right, and everyone would be so happy and full that Ina Garten and her sweet husband Jeffrey would moan with a mix of pleasure and jealousy.

I sent the post to my little brother, a well-coiffed yuppie who organizes most of his social life around food, and asked what he thought about the recipe. “I don’t know,” he replied. “Ham’s still hard for me.”

With consistent refrigeration, a baked spiral ham will stay fresh for three to five days. That’s when its color shifts from a cheerful pink to a dull grayish-green, as the preservatives begin to buckle under the pressure of prolonged oxygen exposure. After a few more days, it starts to develop a thick, snot-like slime. That’s the bacteria breaking down sugars in the meat, as the decay sets in for real.

Most people throw their food out well before they have to confront this arc in the circle of life. But most people aren’t starving. If you are, you learn to wash the slime off—under hot running water, with soap if you need it—and hope for the best.

Most people throw their food out well before they have to confront this arc in the circle of life

There was a point before the weeks of rotting ham, or months of tortillas and processed cheese, when I could have asked for help. I didn’t.

I had already been fat for my entire life. When I was born, my baby cheeks were so big that they squeezed my eyes shut for the first three months of my infancy. As a kid, I was the worst-case scenario in every game of “would you rather.” I was also stable, smart, and well-adjusted—except that I was miserable. That’s what being fat does: It swallows up everything you do right and hides it in the giant failure that is your body. For women in particular, being fat is such a colossal fuck up that it squeezes out the room to be anything else: Being fat and isn’t an option. (The only exception is being fat and funny, if you manage to be in on the joke of your own fatness.)

By the time I was a teenager, I had learned how to avoid anything that would draw attention to my body: to wear clothes that hid my size, to avoid activities where people looked at me, and above all to hide the fact that I ever ate.

Hiding your eating is tricky in the best of circumstances—there are only so many times that you can just “not be hungry” during lunch, and there’s a thin line between tapping your pen just loud enough to cover the sound of your stomach growling and actually doing desktop drumrolls during Math class. But hiding your eating and asking for help getting enough food is actually impossible: You have to admit that you eat to tell someone you don’t eat enough. And I couldn’t do it.

Instead, my little brothers and I made it five years without setting eyes on a vegetable, eating stale scraps and spoiled meat. It sounds almost foolish now—like we were undone by our own vanity. But the truth is, society uses appearance as a shortcut to determining value. Thin is good; fat is bad. Fat people know that. We are acutely aware that we are considered lazy, weak-willed, and even incompetent—doubly so if we’re also poor.  But humans simply can’t endure being told we’re terrible all of the time. So we avoid situations where that’s likely to happen.

It turns out the stigma against being fat is so intense that it stops people from getting health care, exercising in public, or interacting with other people. For me, that also included finding someone who could help me get food. I knew what I would be up against—what it would take to convince someone I was telling the truth—and I didn’t have the energy. I had homework to do, power to get turned back on, and college essays to write.

Eventually, through no work of my own—I’ll cut off my own feet before anyone ever turns me into a “pulled herself up by the bootstraps” folk hero—the food available to me got better. It got more plentiful. It got healthier. I stayed fat. And now that I’m okay—now that I have water, and heat, and trash pickup—that’s fine. I have the luxury of rejecting the idea that the things that society says give me value—like thinness and prettiness and obedience—mean anything. Because right now, my survival isn’t tied quite so closely to whether or not other people think I deserve to be alive.



No, Forced Labor Is Not Good for Your Health

The Trump administration announced last week that it will allow states to deny Medicaid to people who are not meeting work or other daily activity requirements imposed by state officials. As my colleagues have shown, more than 6 million people are at risk of losing health insurance under the new policy. This makes it all the more infuriating that the Trump administration is making the Orwellian claim that its change will make people healthier.

In a series of tweets, Seema Verma, the Trump official who oversees Medicare and Medicaid, argued that work requirements will “improve health outcomes” and cause improvement in “mental and general health, and well-being.” The administration’s guidance allowing states to deny people Medicaid makes similar claims.

The administration points to two research reviews it says support its case for allowing state officials to deny Medicaid to low-income people not meeting state work requirements. In fact, neither of the studies say that imposing work requirements as a condition of receiving health care will improve health. Moreover, both of the studies rely heavily on research from countries with universal health coverage—that is, countries that provide health care and coverage to all of their people regardless of employment status and without imposing work requirements. In these countries, people are empowered to make work and education choices without being threatened with the loss of health insurance if the state doesn’t like their choices.

In short, the reviews don’t tell us anything about the impact of Medicaid work requirements on health. What they actually do tell us is the that relationship between health and employment is much more complicated than the administration suggests.

The most rigorous and recent of the two reviews found insufficient or inconsistent evidence that employment was beneficial for general health, except for depression. The authors also cautioned that selection effects—the fact that more healthy people are more likely to work—may have caused an “overestimation” of their findings that work was beneficial for depression. In theory, one could conduct a demonstration study that denied employment to some people while providing it to others in order to isolate the causal effects of employment on health. But, as the authors note, this would be unethical.

The older and less rigorous of the two reviews, a 2006 evidence review commissioned by the United Kingdom’s Department of Work and Pensions, concludes that “the balance of the evidence” shows that work is “generally good for health and well-being, for most people.” But it goes on to detail what it calls “major provisos.” These include that “health effects depend on the nature and quality of work” and its “social context,” and that “jobs should be safe and accommodating.” The more rigorous review makes a similar point and notes research concluding that “low-quality jobs can lead to reduced health, while high-quality jobs can lead to improved health.”

These findings about how low-quality jobs can negatively impact health are particularly relevant for Medicaid beneficiaries. As researchers at the Kaiser Family Foundation have documented, most non-elderly Medicaid enrollees (who do not also receive SSI disability benefits) are employed, but typically in poorly compensated jobs that do not offer health insurance. Among non-elderly Medicaid enrollees who are not employed, physical and mental health impairments are common.

If the state officials and the administration want to improve health and well-being, they should offer real help with finding well-paying, safe, and accommodating work to all Medicaid enrollees, but on a voluntary basis. This help should include child care assistance and other work supports. But allowing state officials to coerce people to take any job—or work even more—under threat of losing their health insurance takes away people’s agency and will cause far more harm than good.

Finally, if the administration is serious about improving the health of working-class people, then it should stop rolling back important labor standards and worker protections. And it should get serious about improving job quality, including by raising the minimum wage as President Trump made a campaign promise to do.

Bottom line: All the happy Orwellian Twitter talk from Trump officials won’t change the fact that their policy will hurt millions more than it will help.



What Farmworkers Can Teach Hollywood About Ending Sexual Harassment

What could Hollywood’s brightest stars learn from farmworkers in Florida’s tomato fields? When it comes to creating a workplace where women are empowered to report sexual harassment—and receive justice rather than retaliation when they do so—the farmworkers of the Coalition of Immokalee Workers (CIW) offer a proven model. That the group created this solution in a town known less than a decade ago as “ground zero for modern slavery” makes it all the more remarkable and promising for other industries.

Agriculture is a notoriously dangerous industry for women: 80 percent of women farmworkers report having experienced some form of sexual violence on the job. The CIW is addressing this crisis through its Fair Food Program (FFP), which puts market pressure on tomato growers to enforce a strict code of conduct in their fields. The code, which was developed by workers themselves, sets various human rights standards, one of which is zero tolerance for sexual assault. (It mandates immediate firing for unwanted “physical touching.”) If violations of the code go unaddressed, the result is severe economic consequences for the grower.

To enforce the code, which covers more than 90 percent of Florida’s $600 million tomato industry, the CIW has established legally-binding agreements with 14 of the world’s largest retail food corporations that purchase tomatoes—including WalMart, Whole Foods, Trader Joes, and all major fast-food companies with the exception of Wendy’s. These corporations promise to cut off purchases from farms that are out of compliance with the code. Now, tomato growers know if they don’t crack down on abuses in their fields, they can’t sell their produce to these major buyers. These agreements didn’t come easily: CIW educated consumers about the plight of farmworkers via hunger strikes, marches, and direct action. It took intense public pressure to get most of the corporate retailers to sign on.

Nely Rodriguez, a CIW staff member originally from Mexico, says it’s the economic consequences that make all the difference. “We’ve shown how the power of the market can be used to improve the conditions in the field,” she says. Under the FFP, workers are able to monitor their own workplaces for violations of the code, and can lodge complaints via a trilingual 24-hour hotline operated by an independent monitoring organization, which does annual announced and unannounced audits on participating farms and investigates all complaints. (During those audits, they speak to at least 50 percent of the workforce, including workers, crew leaders, and supervisors.) In contrast to other workplace hotlines that might be contracted out, or answered by a machine or a corporate HR representative, CIW’s always has an expert on call who understands the power dynamics of the tomato industry. Headed by a retired New York State Supreme Court Justice, the monitoring organization also audits the payroll, looking for minimum wage violations and enforcing the penny-per-pound of tomato surcharge that buyers pay to administer the program.

Since the Fair Food Program started, “Everything about working in the fields as a woman has changed,” Rodriguez says. Every new hire immediately receives a tri-lingual pamphlet and watches a CIW-produced video about the code, and then participates in worker-to-worker education sessions in the fields. “You literally can see people speaking up about issues—even in front of the bosses—during these sessions,” she says. “You see the lack of fear—it’s a completely different culture,” Rodriguez says. Prior to the FFP, it was “commonplace” to either suffer sexual violence or to know a victim, “and there was never any consequence if it came to light, or the consequence was the woman losing work.”

‘You literally can see people speaking up about issues—even in front of the bosses’

In recent years, 23 supervisors have been disciplined and nine fired as a result of complaints. When a violation requires corrective action, growers don’t hesitate because they know the hit they will take to their bottom line if they fail to comply. Rodriguez says the number of allegations has slowed, and the nature of the allegations has also changed, as employees and supervisors come to understand that zero tolerance truly means zero tolerance. “Instead of a boss who watches women when they are sleeping, now it might be some vulgar language on the bus,” she says.

CIW’s model is now being replicated in other states, and reaching workers in other industries—most recently dairy workers in Vermont. The MacArthur Foundation recently wrote that it offers the “potential to transform workplace environments across the global supply chain.” And the New York Times called it “the best workplace-monitoring system” in the United States. The CIW has exported its model to farms in seven states and three crops along the East Coast, and it will soon be piloted on citrus and watermelon farms in Texas. It is also informed historic reforms in the Bangladesh garment industry, and is being studied by janitorial and construction workers in Minnesota.

Could this approach work in the television and film industry? The key question is, what parts of the supply chain are equivalent to the tomato buyers? If a CIW-like movement led by the women of Hollywood inked legally binding agreements with 150 major corporations, declaring that they would not buy advertising on network shows that were in violation of a code offering recourse to victims of harassment or assault—that could be a start. What about agreements with the platforms that stream content, like Netflix, mandating that they will only carry films or shows produced by companies that are in compliance with that same code? One could even look at potential agreements with cable providers and national movie theatre chains. All of these agreements would together send a signal that sexual misconduct will not be tolerated in the television and video supply chain, and that companies that do not comply with the agreed-upon code will experience severe economic consequences.

“All Hollywood has to do is ask who has the power, and then bring public pressure to get those agreements signed,” says Rodriguez. “If a solution came from the most unexpected place to eliminate sexual violence in the workplace, they can do it too. And then they could help make sure the model reaches more workers in industries across the country who don’t have the platform and resources that they have.”

This article was produced in partnership with The Nation.



What We Can Learn From California’s New HIV Law

California HIV advocates scored a win this past October, when lawmakers voted to reform several criminal statutes that specifically targeted people living with HIV. The new law, S.B. 239, reduces the penalty for not disclosing HIV-positive status prior to sexual activity from a felony charge punishable by up to eight years of imprisonment to a misdemeanor carrying a potential punishment of up to six months in county jail. The law also repealed a felony that was specific to sex workers living with HIV.

The new provisions, which took effect January 1, now require an actual transmission or for prosecutors to demonstrate that a defendant had intent to transmit HIV. They also recognize that certain risk reduction measures—such as being on antiretroviral treatment or the use of barriers like condoms—negate intent.

California’s new reforms have been hailed as an exemplar for advocates working to modernize laws in other U.S. states. As of 2011, there were 67 laws in 33 states focused on people living with HIV—many of which were drafted in the earliest days of the epidemic when no effective treatments existed. Most of the laws make it a felony to engage in sexual contact without disclosing your status, and some turn criminal misdemeanors like biting or spitting into felony aggravated assault or attempted murder, despite the universally accepted fact that saliva does not transmit HIV.

State Sen. Scott Wiener (D), who co-authored the bill, believes that the old laws “focus on the exceedingly rare situation where a sociopath runs around and intentionally tries to infect people.” He added, “That’s not who’s being prosecuted under these laws. Who’s being prosecuted? An awful lot of women, particularly African American women and transgender women.”

Recent research from UCLA’s Williams Institute found that 43 percent of the people arrested, charged, or prosecuted under HIV-specific laws were women, even though women only make up 13 percent of the state population of people living with HIV. They also found that felony solicitation enforcement was likely to disproportionately impact LGBTQ youth and transgender women of color, and that white men were statistically less likely to have similar charges brought against them.

“Most of this stemmed from the solicitation part of the law,” said Amira Hasenbush, the Jim Kepner Law and Policy Fellow at the Williams Institute. The first of California’s HIV criminal laws required mandatory HIV testing for individuals convicted of solicitation, and repeat arrests for those already registered as HIV-positive faced felony sentence enhancements. She added that street-based solicitation arrests in California had gone down over the last 15 years with the advent of the internet. But sex workers who rely on public spaces—overwhelmingly black women—now bear a higher burden of arrests.

‘Folks really do think that the laws require transmission’

Many state HIV-specific laws that criminalize non-disclosure do so without requiring actual transmission to take place. Many also do not require prosecutors to prove that the defendant had a malicious intent to transmit; what lawyers call a “culpable mental state.”

“Something that I encounter all the time, even among advocates, is that folks really do think that the laws require transmission,” said Kate Boulton, staff attorney for the Center for HIV Law and Policy. “They are surprised to discover that in fact, no harm needs to occur, and that there doesn’t even need to be a risk of harm,” she said. And risk of harm is growing increasingly rare: people living with HIV who have an undetectable viral load and receive antiretroviral treatment cannot transmit the disease to sexual partners.

The new California law takes this into account. “If you are on treatment, or if you used a condom, those are things that would negate the required intent to transmit,” said Boulton.

Still, advocates disagree on how to move forward.

“It’s very exciting what came from S.B. 239, because you see success is possible,” said Boulton. “But it’s not without its drawbacks,” she added, cautioning the use of viral load suppression as the basis for deciding a defendant’s intent.

“It’s important for advocates to be mindful of potential negative consequences if these laws are modified to criminalize only people with HIV who have detectable viral loads, even when there is no transmission or intent to harm,” says Bruce Richman of the Prevention Access Campaign. Legislation that places a premium on having an undetectable viral load would leave many HIV-positive people—particularly those experiencing a lapse in treatment or those whose HIV becomes resistant to treatment—subject to the same punishments that are currently in place. So for now, legal scholars, public health professionals, and HIV advocates are still struggling to find the balance between using viral suppression as an approach to defining risk reduction and negating intent, without tipping the legal scales against those who have less access to HIV care.

In the long term, advocates are hopeful that reforming these laws, educating lawmakers, and working to increase access to HIV prevention and care will improve legal and health outcomes in low-income and marginalized communities. Otherwise, added Boulton, “It’s just punishing and incarcerating people strictly on the basis of health status.”

Correction: This article has been updated to amend inaccuracies regarding S.B. 239, and to include the latest research from the Williams Institute.



Why We Need to Stop Calling Trump ‘Crazy’ When We Really Mean ‘Dangerous’

Questions about President Donald Trump hit a fever pitch this week following his tweets about the size and potency of his nuclear button. Of course, such questions are nothing new. Throughout the campaign and Trump’s first year in office, news articles, op-eds, and tweets critical of him have routinely deployed words such as “crazy,” “insane,” and “unstable” as epithets. But what are the implications of the use of mental health language in such critiques for how our society views mental illness?

I sat down with Rebecca Cokley, a senior fellow for disability policy at the Center for American Progress, to discuss this.

Rebecca Vallas: So I’ve had conversations with a lot of folks who say “Why does it matter? People can use all kinds of language but isn’t this just about people being a little too PC?”

Rebecca Cokley: I’m going to read a quote from Leslie Templeton from the Women’s March Disability Caucus. She just posted a series of snapshots of news clips talking about the mental status of Trump. She said, “When you read stuff like this, having said issue yourself, it makes you feel small. It makes you feel inferior, it makes you feel weak. Not only do I feel like my rights are being attacked by Trump, I feel who I am is being attacked by the American people.”

These are people’s lives. The accusation of someone’s unfitness to serve in any sort of role—whether as a parent, a colleague, a boss, an educator—is impacted by the slightest accusation, especially around mental health. It’s not about someone being PC or not, it’s really about a lack of understanding of the impact of labeling someone without irrefutable proof.

RV: So there’s a connection being made between his negative behaviors and his unpopular policies that people are explaining by this labeling. You’re saying that by extension people who themselves have mental health disabilities, mental illness, intellectual disabilities, and so forth are being implicated in these negative behaviors.

RC: Definitely. I also think one of the challenges with all these armchair diagnostics is that the people that are doing it aren’t even clear on what a mental health disability is. We sit there and see articles titled like, “Can someone with the attention of a kitten on crack make a decision?”, “Trump has social autism,” “Trump has a dangerous disability.” People still like to think about the other, the unknown, the shadow in the corner of the room, the thing we don’t talk about, versus acknowledging that it’s your son seeking therapy, it’s your best friend who is grieving the loss of their mother, it’s your boss who is now taking anti-anxiety meds. It’s much easier to castigate those folks than to say, “No, these are real people, and in some cases even me.”

‘We can conclude that the president is unfit to serve without armchair diagnosis’

RV: There’s a particular significance of this conversation having to do with the presidency or really with any elected office. It’s basically gospel that people with mental illness or mental health disabilities are unfit to serve. If someone has ever sought treatment—whether for depression or for substance misuse—even just that can stop someone from being taken seriously as a potential candidate. So in reinforcing this kind of narrative around what mental illness is and tacking it onto Trump’s face, there is a much deeper consequence that a lot of people aren’t thinking about that has to do with maintaining the status quo or even taking us backwards in terms of representation by people with disabilities in elected office.

RC: Definitely. When we’re talking about people with disabilities writ large we’re talking about 54 to 58 million people. If you’re zooming in specifically on people with mental health disabilities or mental illness, we’re talking about 10 million people in this country. And I think as we’re talking about Trump, it really is much easier to point at “mental fitness” than to actively talk about behaviors. That’s uncomfortable, because it forces us to be specific: What are the behaviors that we’ve seen? What are the behaviors that are evident in this person’s history that we should be pointing at to say “we screwed up here.” We dropped the ball, we elected somebody who was unfit to become president of the United States.

Besides, we have a history in this country of electing people with disabilities. Right now we can look at Sen. Tammy Duckworth (D-IL) and Rep. Jim Langevin (D-RI) as people with physical disabilities that are currently serving in government.

RV: Your examples point out that people would not be looking at Trump and saying “man, his disability makes him unfit to serve” if it were a physical disability—that’s something that people at their core would understand would be deeply offensive. But if it’s a mental illness, all of a sudden that seems to be equivalent to unfitness to serve.

That brings us to something you often talk about, what you refer to as “a hierarchy of disability.” And what this means in the policy context, for example, is that it has been a lot easier to get health coverage if you’re a person who has a physical illness or a physical disability than it is to get mental health coverage. But that conversation is rare when it’s about social perceptions and stigma. I think what we’re seeing here is this massive gap between the trust that a lot of people in this country have for the potential leadership or decision-making by people without disabilities or people with physical disabilities, compared with people who have mental health disabilities or mental illness or intellectual disabilities and so forth. Am I right to characterize it that way?

RC: I think you’re definitely right. I’ll even use myself as an example, being a little person. I walk in the room and you can tell that I’m a little person. Nobody is going to object to me asking for a stool or jumping on the chair to push the chair down. But for a long time I wasn’t as out about having obsessive compulsive disorder and it wasn’t something I frequently talked about until I was in my 20s. I was actually challenged by a friend and mentor of mine, Andy Imparato, who is very outspoken about having a mental health disability. When Andy and I were on a four-hour car ride from Washington, D.C. to Newport News for the Virginia Youth Leadership Forum, there were two topics of conversation: One, why haven’t I proposed to my then-boyfriend, now husband and two, why don’t I talk about having OCD?

We had a conversation about why I was hesitant to talk about it, and why I had put myself out as an advocate, as a spokesperson, as somebody working in the disability space, but I was not coming to the table with my whole self there. And so I tried it that night. I addressed the fact that I walk in the room as a little person and that’s a privilege. And I often don’t think we talk about disability as privilege. There is a privilege to my existence as a person with a physical disability. There’s a privilege to the fact that unlike 80% of disabled people, I grew up in a family just like me.

And then I addressed the fact that I also have Obsessive Compulsive Disorder and I used to wash my hands like 200 times a day. The number of young women who came up to me afterward was amazing. It was about 50 young women that pulled me aside that all wanted to talk about mental health disabilities. The fact that I had a job, the fact that I was in a relationship, the fact that I was being paid to go around the country and talk to other young people with disabilities, and the fact that I was working on a presidential campaign at the time were huge.

So I think a lot of times when we have internally stigmatized our own mental health disabilities and then we face a public that criminalizes mental health, without any criminal behaviors associated with it. We do it for no more reason other than to say that you don’t like somebody, for no more reason than to say that somebody is evil or you don’t agree with their decisions. It invalidates a part of their humanity, and makes it that much harder for folks to come out.

RV: I want to get to the solutions part—how we do better. You talked about the importance of precision in language. What’s your advice to those folks who are out there wanting to be good allies on this?

‘It invalidates a part of their humanity, and makes it that much harder for folks to come out.’

RC: I think checking in on your friends that have mental health disabilities and saying, “Hey, how is it going? Do you need anything? How are you feeling in this time?” And doing some real deep listening as to what people are encountering, because it’s hard right now. I think also connecting to organizations that work with folks with mental health disabilities, whether it be groups like Dan Fisher’s Psych Survivors Network or certain chapters of the National Alliance on Mental Illness that are doing some really good things. Engage to see what needs to be said, what is the right language to use, and ask your friends. So much of our language gets caught up on the fear of saying the wrong thing versus taking five seconds and asking your friends what’s the right thing to say.

I also think, as long as we continue to hold mental health at arms length as “the other,” we can’t have the conversation that we really need to be having. That leads to the criminalization of mental health and the knee-jerk reaction of saying, “Oh, that person can’t do that job because they’re nuts.”

RV: I want to read a tweet by Julia Bascom, Executive Director of the Autistic Self Advocacy Network. She says, “We can conclude that the president is unfit to serve without armchair diagnosis or violations of medical ethics. We can resist racism, totalitarianism, and a nuclear threat without ableism. We don’t need this, we can do better, progressives have a moral obligation to do better.” Powerful words. But it feels to me that that piece of call-to-action language doesn’t quite go as far as some people are wanting to go, especially given the conversations about invoking the 25th Amendment. So I would love to hear any suggestions you have about how people can handle these kinds of hard and honest conversations when folks are looking for guidance about how they can actually engage in this conversation but in a way that is not ableist.

RC: I think going back to the last line of Julia’s tweet, progressives have a moral obligation to do better. We are the party that came up with mental health parity in health care, thanks to former Senator Paul Wellstone. We are the party that is pushing for the U.N. Convention on the Rights of Persons with Disabilities. We are the party that is pushing to end sub-minimum wage programs for people with disabilities. We are the party that is pushing to increase access to mental health services on college campuses and programs for young people with mental health disabilities. Why are we then at the same time being so quick to use disability diagnosis as a weapon? Because we don’t like the president and we think the president is acting like a jackass. If President Obama wasn’t afraid to say Kanye was a jackass, why can’t we say that President Trump is being a jackass?

This interview was conducted for Off-Kilter and aired as part of a complete episode on January 6. It was edited for length and clarity.