Weekly Pulse: Health Care Reform Without Kennedy

Lindsay E. Beyerstein

Sen. Edward Kennedy succumbed this week to brain cancer at the age of 77. During his 46-year career in the Senate, Kennedy's name appeared on virtually every major piece of progressive legislation from civil rights to economic justice.

One of healthcare reform’s greatest champions died Tuesday night. Sen.
Edward Kennedy (D-Mass.) succumbed to brain cancer at the age of 77.
During his 46-year career in the senate, Kennedy’s name appeared on
virtually every major piece of progressive legislation from civil
rights to economic justice, to healthcare. Kennedy called healthcare
reform "the cause of my life."

Jack Newfield of The Nation remembers Kennedy as the senate’s fighting liberal, the "best and most effective senator of the past hundred years."

James Ridgeway of Mother Jones laments:

We are left with weak, squabbling,
visionless Democratic puppets and a President whose domestic reform
policies are adrift-sliding towards the horizon with each passing day.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

The loss is a blow to healthcare reform. Alex Koppelman of Salon notes that
with Kennedy’s passing, the Democrats have lost one of their most
effective bipartisan deal-makers. Democrats will also be down a vote in
the senate for the foreseeable future because Massachusetts state law
doesn’t allow for the appointment of an immediate replacement.

Naturally, with congress on vacation, wackos are rushing in to fill
the media vacuum. Eric Boehlert asks in AlterNet why Republicans the
only ones allowed to get angry
about healthcare reform, or anything else. He notes that in 2003, the
media decided that Howard Dean was too angry for prime time. During the
Republican National Convention in 2008, SWAT teams were sent to raid
the homes of suspected anarchist protesters. And yet, conservative
demonstrators in Arizona are allowed to tote rifles just outside the
security perimeter of a presidential event.

RNC Chair Michael Steele raised eyebrows by championing single-payer healthcare in an op/ed in the Washington Post framing the GOP as defenders of Medicare.

Odd that Steele has so much love for Medicare, but none for the
nation’s other leading source of government-run healthcare, the
Veterans Administration (VA). This week, Steele accused America’s other
leading public insurance provider of encouraging veterans to commit suicide,
based on a booklet published by the VA which explains living wills,
advanced directives and other key concepts in end-of-life care, Rachel
Slajda reports for TPM DC.

Progressives have been doing a great job debunking the death panel and death book myths, like this creative photo essay
from TPM. But we’re scarcely addressing  the misconception that
underlies them: The idea government-administered health insurance is
inherently more prone to rationing than private health insurance.

Newt Gingrich and other prominent opponents of reform claim that a public option will restrict choices and deny care. What they don’t say is that for-profit insurance is
rationing. When your insurance company covers an old drug for your
condition, but not a new one with fewer side effects, that’s rationing.
The company is restricting your treatment choices to improve its bottom
line. When an employer or an insurer decides not to cover mental health
care, that’s rationing. The entire business model is predicated on
charging people more and giving them less care so there’s more money
left over for the stockholders.

No health insurance can cover every treatment, no matter who runs
it. But public insurance has two major advantages: 1) Public insurance
tends to be cheaper to administer; 2) The tough choices about what to
cover are ultimately in the hands of the voters, not health insurance
bureaucrats with an eye on the bottom line.

The whole town hall concept is turning out to be a strategic blunder
for the White House. The format makes legislators and the media sitting
ducks for extremists and astroturfers who want to paint themselves as
typical citizens. As Sandy Heierbacher of the National Coalition for Dialogue and Deliberation writes in YES Magazine:

[T]he town hall design sets the stage for activist
groups and special interest groups to try to ‘game’ the system and
sideline other concerned citizens in the process. As Martin Carcasson,
director of Colorado State University’s Center for Public Deliberation,
recently pointed out, "the loudest voices are the ones that get heard,
and typically the majority voices in the middle don’t even show up
because it becomes a shouting match."

How much more clear can the Republicans be? They are not interested in bipartisanship. Sen. Chuck Grassley
(R-Iowa), supposedly the Senate’s leading reasonable Republican on
healthcare, couldn’t even be bothered to rebuke a town hall participant
who hinted about assassinating the president, as Raw Story reports.

If the Democrats want healthcare reform, they are going to have to
go it alone. Let’s hope they pass a bill that would make Sen. Kennedy
proud.

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.”

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

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.

Analysis Politics

Advocates: Bill to Address Gaps in Mental Health Care Would Do More Harm Than Good

Katie Klabusich

Advocates say that U.S. Rep. Tim Murphy's "Helping Families in Mental Health Crisis Act," purported to help address gaps in care, is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.

The need for reform of the mental health-care system is well documented; those of us who have spent time trying to access often costly, out-of-reach treatment will attest to how time-consuming and expensive care can be—if you can get the necessary time off work to pursue that care. Advocates say, however, that U.S. Rep. Tim Murphy’s (R-PA) “Helping Families in Mental Health Crisis Act” (HR 2646), purported to help address gaps in care, is not the answer. Instead, they say, it is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.

“We believe that this legislation will result in outdated, biased, and inappropriate treatment of people with a mental health diagnosis,” wrote the political action committee Leadership Conference on Civil and Human Rights in a March letter to House Committee on Energy and Commerce Chairman Rep. Fred Upton (R-MI) and ranking member Rep. Frank Pallone (D-NJ) on behalf of more than 100 social justice organizations. “The current formulation of H.R. 2646 will function to eliminate basic civil and human rights protections for those with mental illness.”

Despite the pushback, Murphy continues to draw on the bill’s mental health industry support; groups like the American Psychiatric Association (APA) and the National Alliance on Mental Illness (NAMI) back the bill.

Murphy and Rep. Eddie Bernice Johnson (D-TX) reintroduced HR 2646 earlier this month, continuing to call it “groundbreaking” legislation that “breaks down federal barriers to care, clarifies privacy standards for families and caregivers; reforms outdated programs; expands parity accountability; and invests in services for the most difficult to treat cases while driving evidence-based care.”

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

Some of the stated goals of HR 2646 are important: Yes, more inpatient care beds are needed; yes, smoother transitions from inpatient to outpatient care would help many; yes, prisons house too many people with mental illness. However, many of its objectives, such as “alternatives to institutionalization” potentially allow outpatient care to be mandated by judges with no medical training and pushed for by “concerned” family members. Even the “focus on suicide prevention” can lead to forced hospitalization and disempowerment of the person the system or family member is supposedly trying to help.

All in all, advocates say, HR 2646—which passed out of committee earlier this month—marks a danger to the autonomy of those with mental illness.

Victoria M. Rodríguez-Roldán, JD, director of the Trans/GNC Justice Project at the National LGBTQ Task Force, explained that the bill would usurp the Health Insurance Portability and Accountability Act (HIPAA), “making it easier for a mental health provider to give information about diagnosis and treatment … to any ‘caregiver’-family members, partners or spouses, children that may be caring for the person, and so forth.”

For the communities she serves, this is more than just a privacy violation: It could put clients at risk if family members use their diagnosis or treatment against them.

“When we consider the stigma around mental illness from an LGBT perspective, an intersectional perspective, 57 percent of trans people have experienced significant family rejection [and] 19 percent have experienced domestic violence as a result of their being trans,” said Rodríguez-Roldán, citing the National Transgender Discrimination Survey. “We can see here how the idea of ‘Let’s give access to the poor loved ones who want to help!’ is not that great an idea.”

“It’s really about taking away voice and choice and agency from people, which is a trend that’s very disturbing to me,” said Leah Harris, an organizer with the Campaign For Real Change in Mental Health Policy, also known as Real MH Change. “Mostly [H.R. 2646] is driven by families of these people, not the people themselves. It’s pitting families against people who are living this. There are a fair number of these family members that are well-meaning, but they’re pushing this very authoritarian [policy].”

Rodríguez-Roldán also pointed out that if a patient’s gender identity or sexual orientation is a contributing factor to their depression or suicide risk—because of discrimination, direct targeting, or fear of bigoted family, friends, or coworkers—then that identity or orientation would be pertinent to their diagnosis and possible need for treatment. Though Murphy’s office claims that psychotherapy notes are excluded from the increased access caregivers would be given under HR 2646, Rodríguez-Roldán isn’t buying it; she fears individuals could be inadvertently outed to their caregivers.

Rodríguez-Roldán echoed concern that while disability advocacy organizations largely oppose the bill, groups that represent either medical institutions or families of those with mental illnesses, or medical institutions—such as NAMI, Mental Health America, and the APA—seem to be driving this legislation.

“In disability rights, if the doc starts about talking about the plight and families of the people of the disabilities, it’s not going to go over well,” she said. “That’s basically what [HR 2646] does.”

Rodríguez-Roldán’s concerns extend beyond the potential harm of allowing families and caregivers easier access to individuals’ sensitive medical information; she also points out that the act itself is rooted in stigma. Rep. Murphy created the Helping Families in Mental Health Crisis Act in response to the Sandy Hook school shooting in 2012. Despite being a clinical psychologist for 30 years before joining Congress and being co-chair of the Mental Health Caucus, he continues to perpetuate the well-debunked myth that people with mental illness are violent. In fact, according to the Department of Health and Human Services, “only 3%-5% of violent acts can be attributed to individuals living with a serious mental illness” and “people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”

The act “is trying to prevent gun violence by ignoring gun control and going after the the rights of mentally ill people,” Rodríguez-Roldán noted.

In addition, advocates note, HR 2646 would make it easier to access assisted outpatient treatment, but would also give courts around the country the authority to mandate specific medications and treatments. In states where the courts already have that authority, Rodríguez-Roldán says, people of color are disproportionately mandated into treatment. When she has tried to point out these statistics to Murphy and his staff, she says, she has been shut down, being told that the disparity is due to a disproportionate number of people of color living in poverty.

Harris also expressed frustration at the hostility she and others have received attempting to take the lived experiences of those who would be affected by the bill to Murphy and his staff.

“I’ve talked to thousands of families … he’s actively opposed to talking to us,” she said. “Everyone has tried to engage with [Murphy and his staff]. I had one of the staffers in the room say, ‘You must have been misdiagnosed.’ I couldn’t have been that way,” meaning mentally ill. “It’s an ongoing struggle to maintain our mental and physical health, but they think we can’t get well.”

Multiple attempts to reach Murphy’s office by Rewire were unsuccessful.

LGBTQ people—transgender, nonbinary, and genderqueer people especially—are particularly susceptible to mistreatment in an institutional setting, where even the thoughts and experiences of patients with significant privilege are typically viewed with skepticism and disbelief. They’re also more likely to experience circumstances that already come with required hospitalization. This, as Rodríguez-Roldán explained, makes it even more vital that individuals not be made more susceptible to unnecessary treatment programs at the hands of judges or relatives with limited or no medical backgrounds.
Forty-one percent of all trans people have attempted suicide at some point in their lives,” said Rodríguez-Roldán. “Once you have attempted suicide—assuming you’re caught—standard procedure is you’ll end up in the hospital for five days [or] a week [on] average.”

In turn, that leaves people open to potential abuse. Rodríguez-Roldán said there isn’t much data yet on exactly how mistreated transgender people are specific to psychiatry, but considering the discrimination and mistreatment in health care in general, it’s safe to assume mental health care would be additionally hostile. A full 50 percent of transgender people report having to teach their physicians about transgender care and 19 percent were refused care—a statistic that spikes even higher for transgender people of color.

“What happens to the people who are already being mistreated, who are already being misgendered, harassed, retraumatized? After you’ve had a suicide attempt, let’s treat you like garbage even more than we treat most people,” said Rodríguez-Roldán, pointing out that with HR 2646, “there would be even less legal recourse” for those who wanted to shape their own treatment. “Those who face abusive families, who don’t have support and so on—more likely when you’re queer—are going to face a heightened risk of losing their privacy.”

Or, for example, individuals may face the conflation of transgender or gender-nonconforming status with mental illness. Rodríguez-Roldán has experienced the conflation herself.

“I had one psychiatrist in Arlington insist, ‘You’re not bipolar; it’s just that you have unresolved issues from your transition,'” she said.

While her abusive household and other life factors certainly added to her depression—the first symptom people with Bipolar II typically suffer from—Rodríguez-Roldán knew she was transgender at age 15 and began the process of transitioning at age 17. Bipolar disorder, meanwhile, is most often diagnosed in a person’s early 20s, making the conflation rather obvious. She acknowledges the privilege of having good insurance and not being low-income, which meant she could choose a different doctor.

“It was also in an outpatient setting, so I was able to nod along, pay the copay, get out of there and never come back,” she said. “It was not inside a hospital where they can use that as an excuse to keep me.”

The fear of having freedom and other rights stripped away came up repeatedly in a Twitter chat last month led by the Task Force to spread the word about HR 2646. More than 350 people participated, sharing their experiences and asking people to oppose Murphy’s bill.

In the meantime, Sen. Lamar Alexander (R-TN) has introduced the “Mental Health Reform Act of 2016” (SB 2680) which some supporters of HR 2646 are calling a companion bill. It has yet to be voted on.

Alexander’s bill has more real reform embedded in its language, shifting the focus from empowering families and medical personnel to funding prevention and community-based support services and programs. The U.S. Secretary of Health and Human Services would be tasked with evaluating existing programs for their effectiveness in handling co-current disorders (e.g., substance abuse and mental illness); reducing homelessness and incarceration of people with substance abuse and/or mental disorders; and providing recommendations on improving current community-based care.

Harris, with Real MH Change, considers Alexander’s bill an imperfect improvement over the Murphy legislation.

“Both of [the bills] have far too much emphasis on rolling back the clock, promoting institutionalization, and not enough of a preventive approach or a trauma-informed approach,” Harris said. “What they share in common is this trope of ‘comprehensive mental health reform.’ Of course the system is completely messed up. Comprehensive reform is needed, but for those of us who have lived through it, it’s not just ‘any change is good.'”

Harris and Rodríguez-Roldán both acknowledged that many of the HR 2646 co-sponsors and supporters in Congress have good intentions; those legislators are trusting Murphy’s professional background and are eager to make some kind of change. In doing so, the voices of those who are affected by the laws—those asking for more funding toward community-based and patient-centric care—are being sidelined.

“What is driving the change is going to influence what the change looks like. Right now, change is driven by fear and paternalism,” said Harris. “It’s not change at any cost.”