Tag Archives: disability

You Don’t Have to Tell Your Employer About a Serious Diagnosis—But You Still Might Want To

Originally published in GQ on August 31, 2020.
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On Friday, Actor Chadwick Boseman died of colon cancer at age 43. From an announcement posted to his Instagram, the public learned the star had originally received the diagnosis in 2016, and that he had filmed many of his best-loved films while undergoing chemotherapy and surgeries to fight the disease.

The news came as a shock not only to the general public, but even to directors, producers and colleagues he had worked closely with over the last four years. Sarah Halley Finn, the veteran casting director who picked Boseman to play T’Challa in Black Panther, told Vulture she had no idea the actor had cancer as the blockbuster was filmed in 2017. And in a tribute on Saturday, Spike Lee said it never crossed his mind while on set with Boseman. “I never, ever suspected that anything was wrong,” said the director of Da 5 Bloods. “No one knew he was going through treatment.”

The decision of whether to disclose a serious diagnosis like cancer to an employer is frequently a fraught one. Under federal law, no one is required to tell their employer as long as they assume they can reasonably do the work required, but disclosure is necessary to trigger the protections of the Americans with Disabilities Act, the main federal statute protecting cancer patients in the workplace.

Even if workers disclose, employers are limited in what they can ask about the cancer and must keep any medical information they learn confidential. Reasonable workplace accommodations for cancer patients include leaving for doctor’s appointments, time off to recover from treatment, and periodic breaks during the work day.

That Boseman kept his private life under wraps does not mean he never sought any accommodations to deal with his illness in the workplace, and he was potentially able to negotiate well beyond the legal minimum. “Given that it’s Hollywood, I could imagine a contract that [Boseman] enters into with a studio setting out his specific needs and binding anyone to secrecy,” said Sasha Samberg-Champion, a civil rights attorney who specializes in disability law. “If you have that kind of stature and a sophisticated agent you could work those things out. And the employer might not even be allowed to know why you need certain things.”

Gordon Firemark, a Los-Angeles based entertainment lawyer, told GQ that it’s “pretty typical” for an actor’s agent or manager to negotiate special accommodations for their clients like private dressing rooms, separate facilities, transportation or special foods. “If an actor of his stature is starring in a movie and he can’t be there because he had a chemo session, they’ll often just schedule around them, and that could be kept very quiet,” said Firemark.

For many workers who may have less negotiating power, having cancer in the workplace, even with the protections of the A.D.A., can be extremely difficult. To start with, the 30-year-old law does not protect independent contractors or those who work in businesses with fewer than 15 employees. But even employees covered by the law can still face discrimination, as some courts have ruled that extended periods of leave for cancer treatment can be legitimate grounds for termination.

Ann Hodges, a University of Virginia law professor and co-founder of CancerLINC, a nonprofit that helps cancer patients and their families navigate legal issues, said employers are often more willing to accommodate people working in higher-wage jobs.

“Sometimes it’s because they’re just not as easy to replace, or they may have more power in the organization,” she said. “Often those patients also have jobs that can more easily be done remotely.” According to the Economic Policy Institute, higher-wage workers are six times as likely to be able to work from home compared to lower-wage workers.

Hodges, a cancer survivor herself, points out that many Americans also lose their health insurance if they lose their jobs—a problem in the best of times, and an acute crisis for someone in treatment for cancer.

As a member of SAG-AFTRA, the union for film and television actors, Boseman would have had access to the union’s vaunted healthcare plans. But David White, the national executive director of SAG-AFTRA, noted that even these plans have been under strain—they’re “not immune” from the larger issues plaguing America’s healthcare system. Earlier this month, in light of projected deficits in the tens of millions of dollars, the entertainment union announced it would have to tighten eligibility requirements and raise premiums going forward. More than 17,000 people have signed a petition in protest.

“It’s a constant struggle to make sure that we are maximizing access for people like Chadwick and for people who can only dream of having Chadwick’s level of success,” White said.

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Q&A: Drug Addiction Is a Learning Disorder

Originally published in The American Prospect on July 7, 2017.
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For the past 30 years, Maia Szalavitz has researched and reported on science, drug policy, and health. Before that, in her early 20s, she herself became addicted to cocaine and heroin—sometimes injecting the drugs several times a day. Even after overdosing, after being suspended from Columbia University, and after getting arrested for dealing—facing a 15-year-to-life sentence under New York’s now-repealed Rockefeller drug laws—Szalavitz struggled to quit. In her latest book, Unbroken Brain: A Revolutionary New Way of Understanding Addiction, Szalavitz explores why getting off drugs is so difficult. She challenges the public to see addiction as a neurological learning disorder—much more like autism and ADHD—than a moral failing, or a chronic illness. This conversation has been edited and condensed.

Rachel Cohen: Your book takes aim at some of the nation’s central narratives around drug addiction. Can you start by describing some of these, and why you think they’re off the mark?

Maia Szalavitz: We have this whole public narrative around the idea that addiction is a chronic brain disease, which is wrong, and that narrative is overlaid onto a treatment system which is primarily focused on getting people in 12-step self-help groups that basically involve confession, restitution, and prayer. If such a treatment were suggested for autism, or any other illness, people would say, “Wait a minute, that’s faith healing, and that’s not what we do in modern medicine.” But in addiction nobody seems to notice this contradiction, and that’s because we as a culture don’t really believe addiction is a disease—we see it as a sin.

One of your major arguments is that we should start to think of addiction as a learning disorder. What does this mean?

You cannot be addicted without learning that the drug fixes something for you. On a very basic and silly level, if you don’t know, then you can’t crave it, and then you can’t go out and seek it. People can recover from addiction when they learn to do different things.

Addiction, like other learning disorders, tends to start at a particular period in brain development. Like schizophrenia, addiction is overwhelmingly a disorder of late adolescence and early adulthood.

You talk about the problem of “overlearning”—and say addiction is defined by compulsively using a drug or activity despite negative consequences.

One of the most interesting things about addiction is that it’s a special kind of learning, in that it gets learned more deeply. Basically if you think about it, if you love some subject, like math, you will learn about it with an intensity someone who hates math could never achieve. Or if you fall in love with somebody, you start to learn every little thing about that person.

Our brains are evolved to do this so we can successfully reproduce and raise children, but when that system gets misdirected towards a substance, you get this intense learning of cues associated with the drug, intense longing, this sense that if you don’t have it you just can’t survive. It resets the priorities in your brain. If you don’t have love to compare it to, you’d just think this person is completely crazy and they’re making really stupid choices. But when you understand that it’s basically the same thing as when people have affairs—complete with the lying—you realize this is just a misdirection of a very natural system that we all have and are all vulnerable to having misdirected in varying ways.

So “overlearning” occurs when you just focus so intently on one thing. That is a terrible disadvantage when the thing is a drug. But it can be an incredible advantage if that thing is a subject of inquiry you’re using in your work, for example.

What are some implications of recognizing that addiction is a learning disorder?

So there are several things. One is that there’s this interminable debate about whether addiction is a disease or not. My feeling is basically that if you want to call it a disease, if that’s important to you, you can say it’s a disease that takes a form of a learning disorder, like ADHD and depression. If by “disease” you mean that it’s not the person’s fault—I’m totally with you. If by “disease” you mean it’s chronic and progressive, like cancer or Alzheimer’s, well the data just don’t show that.

And like other learning disorders, it only affects narrow parts of learning. For example, you can have dyslexia, but still have a very high IQ.

The other and even more obvious implication is that if addiction is marked by a failure to respond to punishment, then we should realize that punishment is a really stupid way of dealing with addiction. Yet this is what we as a country have decided we’ll do. It’s just insane that we think we can use the criminal justice system for this. It does not solve anything to put someone in a cage for a couple days for possession of a substance.

You find that most of our drug policy was crafted not based on public health, but on racism.

There is no reason other than racism that marijuana is illegal, and it’s very clear from the history that that’s the case. Many tend to have this misguided idea that the Drug Enforcement Agency sat down one day and rationally weighed the costs and benefits of each substance. But all of our drug laws, including alcohol prohibition, resulted from racist or anti-immigration panic, or a combination of the two.

In your book you talk about the importance of “harm reduction” for drug policy. Can you briefly talk about what that is and why it matters?

The idea is well let’s stop moralizing around the idea that people shouldn’t have these types of pleasures, and instead we should care about a person’s drug use when that person’s drug use does harm. If you’re using and things are good, we shouldn’t care. If you’re using and harming yourself and others, that’s when policymakers should get involved.

Harm reduction says let’s accept the fact that people in every culture around the world for all of human history have used psychoactive substances, and instead of trying to stamp out versions of them that we don’t like, let’s focus on the harm. That allows you to figure out why people are using, help them to get better, or to do it more safely. The beauty of harm reduction is it allows you to say to someone, “Hey I want to save your life, it doesn’t matter if you’re still using drugs, I’m not here to judge you, but I don’t want you getting HIV or dying of an overdose.” When you approach someone like that, especially people who are really marginalized and face all kinds of horrible situations, it’s really powerful. They’re so used to people coming at them with an agenda of I’m going to fix you. Simply treating people with kindness and respect creates an opening for change that you can never get through threats and humiliation.

Most people accept that alcohol prohibition didn’t work, yet for some reason still back broad bans on other types of drugs. And you note in your book that even though the U.S. has fought harm reduction policies for drugs, we all can see that harm reduction policies associated with alcohol, such as teaching people to select designated drivers, have been really effective.

This again comes back to racism. Alcohol has long been accepted by white people. Drugs that white people like are legal and drugs that white people have tried to use to oppress other people are not. In America, and around the world because of America, we have decided that certain substances are OK even though they’re more harmful than some illegal ones.

It’s actually kind of surprising that tobacco was legalized because it was an indigenous American drug, but the reason why is because it was one of the first products that America could sell to support its capitalism. Rum, sugar, and tobacco were big drivers of our economy for a very long time—and a lot of that runs on addiction.

We banned other indigenous drugs like marijuana and cocaine because we basically associated these with threats to white culture, particularly threats to white masculinity. If you review the history of how things became illegal, it’s always about how this particular substance makes it easier for this hated minority to get white women through rape and seduction.

Nixon also had his “Southern Strategy” and the idea was to associate black people with crime and drugs, which created a rationale to lock them up. When black people were seen as a signal of criminality, then harsh measures were needed. But when symbols of drugs are associated with white people, we tend to think they need treatment, not punishment. As someone who has advocated for treatment and not punishment for decades, it is really sad to me that the way we have made progress towards humane policy is because we want to be humane towards white people. If we can get towards compassionate policy, though, then hopefully we can make it humane for everyone.

Your book was published before Attorney General Jeff Sessions came to power, and he’s been spewing a lot of regressive rhetoric on drug policy recently. What do you think the Trump administration means for drug reform?

I don’t think anyone knows, but I do think it will be very, very difficult to put the marijuana genie back in the bottle, and that’s a good thing for drug reform generally. Once people realize that you can legalize marijuana and the world does not end, once you see what nonsense our drug laws are based on, it opens the door for creating sensible policy. Our current policies are not rational. They are not scientific. They are not based on anything other than prejudice. And to be clear, this doesn’t mean I think we should create Philip Morris heroin—that would be a bad idea, too—but what we should be thinking about is what is the best way to regulate the human tendency to use psychoactive substances and how do we make sure that the substances people use are the least likely to yield harm. That’s the basis on which we should craft drug policy, not that drugs are immoral.

You talked a bit about disability rights advocates pushing for ‘neurodiversity.’ Do you see addiction as something that should, or will, be part of this movement?

I absolutely do. I think addiction should be considered a form of neurodiversity and we should understand addiction through the lens of disability. If you think about it in terms of autism, people with autism often take comfort in repetitive behaviors, which is very similar to people with addiction who take comfort in repetitive behaviors. When you accommodate people and allow them to be their weird selves, you make things better for everyone.

How was your book received by other experts in the field?

It’s been received amazingly well, which really surprised me because I’ve been saying pretty much the same kinds of things for a long time and it used to be seen as really out there. I’m not the first person to make these arguments, but there really has been a sea-change.

I certainly have gotten criticism from some 12-step people, mainly those who felt like they wouldn’t have been able to recover if they weren’t forced into the 12-step program. My answer to that is that 12-step programs can be fabulous self-help, and should be available, but if we want to argue for more compassionate medical treatment of addiction, then we need to let doctors actually treat it.

Progress often feels slow. As someone who has followed this for many years, is it hard to stay hopeful?

Actually it’s funny because some of the younger activists will say to me, “How can you be so optimistic?” But when I first tried to get people to pay attention to humane drug policies in the ‘80s and ‘90s, I was cast as fringe and radical. And now we have eight states where recreational marijuana is legal. In the 1980s, you’d be told you’re a traitor in the drug war if you even think about stuff like that. We also today have white empowered parents fighting for harm reduction, whereas in the past the white empowered parents were saying to lock up drug users, use tough love. Nobody today even has a good case for why locking up a heroin user for possession is helpful, and that’s a really radical change compared to all the stuff I used to hear during my own addiction and early recovery.

With New Protections Tied Up in the Courts, Home Health Care Workers Aren’t Waiting Around

Originally published in The American Prospect on April 3rd, 2015.
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Almost two years after the Obama administration extended historic labor protections to the nation’s 1.79 million home healthcare workers, those new rights remain in limbo. In September 2013, the Department of Labor (DOL) announced plans to amend a longstanding regulation that has excluded them from earning the federal minimum wage, overtime pay, and compensation for travel on the job. For home healthcare workers in the United States—a group that is nearly 90 percent female—this move marked a significant step towards setting a floor of decent labor standards.

But the rule-change, which was set to go into effect on January 1st, now faces a challenge in federal court, and critics say state legislators are using the ongoing litigation as an excuse to avoid implementing the new protections. At the same time, given that most home healthcare workers are paid through Medicaid and Medicare—two underfunded public programs—many also worry that states will respond to the rule-change by curtailing consumers’ access to quality care. Activists across the country are working to pressure their lawmakers to reckon with these new standards and avoid potential calamity.

Four decades ago, Congress decided that home healthcare workers should be classified more like babysitters who provide “companionship,” rather than as workers entitled to basic protections. Nursing home employees, by contrast, are fully covered under the Fair Labor Standards Act (FLSA), despite performing many of the same tasks. As home healthcare has ballooned in recent years, these occupational distinctions have become harder to justify.

According to the Bureau of Labor Statistics, the U.S. will need one million new home healthcare workers by 2022. But the work is draining, the pay is paltry, and turnover is high. When adjusted for inflation, home healthcare workers’ average hourly wages have declined by nearly 6 percent since 2004. In 2013, the average earnings of home healthcare workers totaled just $18,598. 2013 was also the year that the Obama administration decided it was well past time to update FLSA’s policy. Because the DOL has the authority to amend federal regulations, it was able to enact this change without seeking Congress’s approval.

Though the new DOL rule-change would most directly benefit home healthcare workers, it carries implications for all domestic workers, including nannies and housekeepers. “By improving the conditions and protections in one area, you’re broadly boosting the sense that this is dignified work,” says Elly Kugler, an attorney with the National Domestic Workers Alliance, (NDWA) a group representing domestic workers in the United States.

Whether that change will actually be implemented is another question. Last year three industry groups filed a lawsuit against the DOL rule-change, insisting that it would have a “destabilizing impact” on home healthcare and hurt millions of elderly individuals. On December 22, 2014, a D.C. district judge vacated the rule for third-party employers, arguing that the executive branch cannot make such a regulatory change. A few weeks later, the same judge also vacated FLSA’s revised definition of “companionship services.” The DOL filed a challenge in appeals court, and arguments will be heard later this spring. Some suspect this may ultimately make its way to the Supreme Court.

Then, on March 20th, Labor Secretary Tom Perez sent a letter out to all 50 governors, urging them to focus on budgeting the minimum wage and overtime protections now, “to ensure that [they] will prepared if the Department prevails” in appeals court. Across the country, activists are also pressuring their representatives to focus on these issues. Yet many lawmakers are using the litigation as an excuse to avoid reckoning with the thorny budgetary questions. This means workers may not see minimum wage, overtime, and travel pay increases anytime soon.

“In Georgia, we’re seeing that our lawmakers are not talking about these issues,” says Tamieka Atkins, who leads Atlanta’s chapter of NDWA. “They have the attitude that we’re not going to move on this until the lawsuit comes down.” In response, Atkins’ group launched a campaign to lobby lawmakers and health agency commissioners in advance of their next legislative session. They also started a petition—“Governor Deal: All Eyes Are On Georgia”—asking for gubernatorial support towards minimum wage and overtime.

Activists in Texas are also applying pressure to their leaders. In January, domestic workers launched a home healthcare campaign, bringing together consumer groups, disability rights organizations, and labor unions. The following month—for the first time ever—domestic workers traveled to Austin to share their personal stories and lobby state legislators. “It was a really great opportunity because we agitated on different levels,” says Mitzi Ordonez, a domestic worker organizer at the Fe Y Justicia Worker Center in Houston. “What we found is that many of the lawmakers just didn’t know about these [DOL] changes.”

Compared to Texas and Georgia, some states have made greater progress towards implementing the new labor protections. California, which already pays its home healthcare workers minimum wage, allocated new funds for overtime pay in its 2014-2015 budget, and was prepared to pay workers more at the start of 2015. But after learning about the federal lawsuit, California Governor Jerry Brown decided to postpone the overtime pay, even though there is nothing legally obligating him to do so. Frustrated activists have launched a campaign in protest; they organized meetings with state legislators, held rallies and candle light vigils, and even set up a“Justice for Homecare Tribunal”—a mock trial against the state. “The best thing for us to do is to not rest on our laurels,” says Doug Moore, the executive director of the United Domestic Workers of America. “The governor wants this to go through the courts, but we will use pressure to change his position.” Moore says that if the DOL rule-change is upheld in appeals court, they will then move to demand retroactive overtime pay back to January 1st.

Yet for some states that have reckoned with the rule-change, the results haven’t always been encouraging. “What we have been seeing, unfortunately, is that you can equally comply with FLSA by paying overtime and travel time, or by setting caps on the number of working hours,” says Alison Barkoff, the Director of Advocacy at the Bazelon Center for Mental Health Law. This scenario is playing out in states like Arkansas, which is looking to cap homecare workers to just 40 hours per week, and to limit each worker to just one customer per day. In effect, this would enable states to avoid paying workers overtime and travel costs. But such measures will hurt employees who make their living by piecing together multiple part-time jobs. It may also impact consumers who need more than 40 hours of care, or who may have a harder time finding someone willing to work for just a few hours per day.

Some hope that the Americans With Disabilities Act (ADA) and the Olmstead v. L.C. Supreme Court case, both of which protect disabled individuals from discrimination and unjustified segregation, will help consumers fight back against cuts to healthcare services. “The ADA and Olmstead provide important protections to consumers, but they won’t completely prevent a state from implementing restrictive policies,” Barkoff explains. “The laws do not prohibit a state from capping worker hours, so long as the state has a process for exempting individual consumers who will be seriously harmed. Most consumers will have to shift the way their care is provided.”

Meanwhile, labor activists maintain that their interests are not at odds with those of healthcare consumers, because quality care depends on creating sustainable working conditions. Many in the disability community have also signed amicus briefs in support of extending minimum wage, travel time, and overtime protections to home healthcare workers. “I think it’s important to know that there isn’t just one disability rights community,” says Sarah Leberstein, an attorney with the National Employment Law Project. “Many groups are very supportive, but they’re also really concerned about states taking it seriously and implementing the rules in a thoughtful way that doesn’t result in cuts to services.”

Even if upheld, the DOL rule-change may be hard to enforce. In New York City—a place that has instituted a progressive domestic workers’ bill of rights and a paid sick leave policy—activists have learned first-hand how enforcing these types of laws can be quite challenging.

“It’s really hard to be reliant on a complaint-driven process where workers have to come forth, but still fear retaliation,” says Irene Jor, a New York organizer with NDWA. Many domestic workers are also isolated in private homes, without much regular interaction with other workers who might provide them with moral support to raise grievances. Even once complaints are filed, not all are likely to be dealt with. “The Department of Labor, both on the federal and state level, is incredibly underfunded and does not have enough investigators,” says Leberstein. “So often they can’t simply respond quick enough, and they can’t do targeted enforcement.”

Nevertheless, if the DOL rule-change were upheld, it would be an important achievement. Some businesses would certainly have to adjust their operations to accommodate the new labor protections, but supporters of the rule-change insist that the industry’s opposition is overblown. According to national surveys, less than 10 percent of home healthcare workers even report working more than 40 hours a week. “We’ve also got many examples of big home care agencies that have figured out ways to pay workers properly, and still provide good care,” says Leberstein, who points out that many organizations already operate in states that require minimum wage and overtime protections. “So they’ve either figured out a way to do it and still earn profits, or they’re admitting to violating the laws in their state.”

Asking the public to pick between providing quality care and treating workers fairly is ultimately a false choice wrought through a political culture of austerity. States could avoid this by increasing funds towards Medicare and Medicaid, which would help ensure that the disabled and elderly can access the high-quality and flexible care without compromising national labor standards and worker dignity.

Though the future of the law is still unknown, one thing is clear. This is an issue that cannot be put on hold—thousands of health homecare workers live in poverty and 10,000 more baby boomers turn 65 every single day.