Healthcare is a human right - but not in the United States

(Published in Harvard Public Health)

Abortion rights are just the latest casualty of the United State’s failure to ensure universal and equitable access to healthcare.

The Supreme Court’s ruling on Dobbs v. Jackson in June is just the latest blow to health rights in the United States. National medical associations in the U.S. agree that abortion is essential to reproductive healthcare. So why would abortion not be protected as such? Because the U.S. does not, and never has, protected a right to health.  

Good health is the foundation of a person’s life and liberty. Injury and disease are always disruptive, and sometimes crippling. We might have to stop working, cancel plans, quarantine, hire help, and in cases of long-term disability, build whole new support systems to accommodate a new normal.

The U.S. remains the only high-income nation in the world without universal access to healthcare. However, the U.S. has signed and ratified one of the most widely adopted international treaties that includes the duty to protect the right to life. Under international law, the right to life simply means that humans have a right to live, and that nobody can try to kill another. Healthcare, the United Nations says, is an essential part of that duty. In 2018, the U.N. Committee on Civil and Political Rights said the right to life cannot exist without equal access to affordable healthcare services (including in prisons), mental health services, and notably, access to abortion. The U.N. committee mentioned health more than a dozen times in its statement on the right to life.

The bottom line is: the U.S. can’t claim to protect life if it fails to protect health. And it has consistently failed on all three of the U.N.’s measures— the latest being access to abortion.

In the U.S., our debates around healthcare, and especially abortion, are hampered by a lack of right to health. Instead, the Supreme Court in 1973 protected access to abortion through the rights to privacy and due process, not health. Privacy is mentioned only twice by the U.N. committee commentary on the right to life.

Since Dobbs, several state legislatures have declared it fair game to criminalize abortion procedures even in cases where pregnancy threatens maternal health or life. Despite ample evidence that restrictive abortion laws lead to spikes in maternal mortality and morbidity—core public health indicators—the Court prior to the Dobb’s decision has defended abortion as merely a matter of privacy, not health or life. We know this is a myth. Abortion is deeply tied to the ability to stay healthy and in some cases, alive.

Regardless, our political parties remain deeply polarized on access to healthcare, including abortion. But lawmakers should know there is historical backing in the U.S. for elevating a right to health. None other than U.S. president Franklin D. Roosevelt, first proposed healthcare as a human right in his State of the Union address in 1944, as part of his ‘Second Bill of Rights.’ His list featured aspirational economic and social guarantees to the American people, like the right to a decent home and, of course, the right to adequate medical care.

Eleanor Roosevelt later took the Second Bill of Rights to the U.N., where it contributed to the right to health being included in the Universal Declaration of Human Rights in 1948. The right to health is now accepted international law, and is part of numerous treaties, none of which the U.S. Senate has seen fit to ratify. The U.S. conservative movement has historically declared itself averse to adopting rights that might expand government function and responsibility. In contrast, state legislatures in red states are keen to expand government responsibility when it comes to abortion. The conservative movement condemns government interference in the delivery of healthcare—except when it comes to reproductive health. The American Medical Association has called abortion bans a “direct attack” on medicine, and a “brazen violation of patients’ rights to evidence-based reproductive health services.”

Excepting access to abortion, U.S. lawmakers have largely left healthcare to the markets, rather than government. True, the government funds programs like Medicaid and Medicare but these programs vary significantly in quality and access by state, falling far short of providing fair, equitable, universal access to good healthcare.

The only two places where the U.S. government accepts some responsibility for the provision of healthcare are 1) in prisons and mental health facilities; and 2) in the military. While healthcare services in the U.S. prison system are notoriously deficient, they nevertheless exist and are recognized as an entitlement, underpinning the right to life. As an example, in 2005 a federal court seized control of the failing healthcare system in California’s Department of Corrections citing preventable deaths. In the military, free healthcare is an entitlement, and the quality of that care is deemed good enough even for the U.S. president.

So why doesn’t everyone in the U.S. have the same rights?

It is an uphill battle in a country that sees health and healthcare as a private matter for markets and individuals to navigate. But if we want to improve public health in the U.S. we need to start legislating healthcare as a right—and recognize that achieving the highest possible standards of public health is a legitimate government function.

The Myth of Impossibility

A couple of weeks ago, my husband and I celebrated our wedding anniversary by spending a night in a hotel room overlooking Brooklyn Bridge Park. The view was spectacular and we spent most of the night watching barges and ferries going up and down the East River and people walking their dogs. It was indescribably beautiful and mesmerizing, and the main thought that emerged for me was, “I want to walk here at night,” immediately followed by “but that’s impossible,” and then “but is it really, though?.” 

Because what makes it feel impossible for me to walk in a semi-deserted park at night is not a physical barrier but rather a socially constructed one: I would not feel safe. Whether this is objectively true is not relevant. The point is that I intuitively articulated a key part of the world I want to live in - one where I am safe - and that it felt impossible to achieve.

This, at a much larger scale, is what is happening with our reactions to the deep structural inequalities the COVID pandemic has surfaced. 

In the United States, Black and latino individuals are up to twice as likely to die from a coronavirus infection as white people. This observable fact is linked to inequitable access to health care, as well as to stress-induced morbidity at least partially caused by underlying violence and hostility. Even when Black people do reach hospitals for care, they are sometimes distrusted and their subjective experience of their own bodies is ignored.

You don’t have to be a public health official or a policy expert to know what a better world would look like: one where access to health care is freely available, where everyone's experience can be heard, and which is prioritizing those who need it most. And yet, when we plan around even just one single health intervention - access to the COVID-vaccine - the people prioritized are those with money or in predominantly white neighborhoods.   

Another topic the pandemic has underlined is our collective misuse of natural resources, in particular in countries with high levels of personal car ownership and use. This is nothing new, of course, but the evidence highlighted by the near total worldwide stand-still of air and automobile traffic in March and April 2020 showed just how much we actually can control. Emissions picked up immediately as lockdowns lifted. Again, it is easy to imagine a more balanced world: one where we organize ourselves around collective modes of transportation and where local products - those that do not have to be flown in from abroad - are not only accessible but promoted and their exchange incentivized. And yet, one of the first things France’s President Macron did when the initial lockdown was lifted was to authorize massive governmental support for individual car-ownership in France, rather than investing that very same amount on an equally job-producing overhaul of the country’s infrastructure.

My point is that we already know what we need: a community where we are all safe, seen as our full selves, and in harmony with nature and the physical world we inhabit. But as we begin to envisage that world, we immediately revert to our current set-up. Sure, it is harmful and not sustainable, but the road to the alternative feels scary and unknown and therefore we dismiss it as impossible when really it is not.

I am not (excessively) naive. I know that there are people in power whose short term interests fuel the all-but-calcified status quo. I know that our regulatory systems often are set up to protect the interests of the powerful - observe the recent chaos and panic caused by individual speculators playing the stock market in a way that led to massive losses of established companies, when no panic ensued where the opposite was true. 

And yet, we have the tools to circumvent many of these structures: crypto-currency, collective community action, locally-grounded economies, and - yes - love. Because love is what is at the heart of the world we all know we want to live in. And the only thing standing between us and that world is the myth of impossibility.

A culture of care: helping activists and their allies look after themselves

@ OpenDemocracy

Self-care is often the last thing on the minds of frontline human rights defenders. But it is the only thing that can make activism sustainable.

Last year at least 321 human rights defenders, in 27 countries, were killed, and frontline activists are increasingly also the targets of digital attacks and state oppression . The impacts of these threats transcend the activists’ work, rippling out to create fear and anxiety in their daily lives, for their families and within their communities. This lack of wellbeing is as paralysing as insecurity can be. Given this, self-care becomes a precondition for social justice work, and so – as feminist activist and writer Audre Lorde famously said – an act of political warfare.

People on the front line of that war need and deserve the support of donors and allies beyond their own communities. Many of those who we support at The Fund for Global Human Rights (the Fund), where I work, face steeply escalating security challenges and so we are in ongoing conversations with them about how we – as a donor and ally – can better, and over the long term, help lift the physical and emotional burden that insecurity places on them. From these conversations my colleagues and I have learned some important lessons about how to fund and support the security and well-being of frontline activists – but also about ourselves.

After the emergency

When we think of security risks and infringements of our wellbeing, it’s often acute dangers that come to mind: threats linked to a particular activity or event; the deep sadness that comes with the sudden death of friends. But the first lesson is that emergency help in response to an acute situation isn’t enough.

Within the human rights community, a focus on emergencies alone has encouraged the rise of ‘hard security’ experts and organisations, and emergency funds for the immediate evacuation of activists facing imminent risks. All these are great and necessary for responding to life-threatening security breaches. However, they do not address the long-term security and wellbeing needs of frontline activists or their communities once the emergency period has ended.

Right now, for example, the Fund is supporting the temporary relocation of four community leaders and their families. They were receiving threats because of their community’s resistance to a mining project that would destroy their land and jeopardise livelihoods. This relocation – and the accompanying strengthening of physical security for the community – can be absolutely necessary as a last resort. But it has consequences that last: disrupted learning for children, disrupted livelihoods for everyone, and ongoing guilt for placing one’s family in this position, to name a few.

Emergency help in response to an acute situation isn’t enough

Add to these long-term effects of acute danger the everyday risks of the work. Some are inherent in the pursuit of justice and equality itself, such as feeling powerless when campaigns fail or new injustices occur. Others are due to the specifics of the place where the work is done: war zones and humanitarian crisis areas are obvious examples, but women who work outside the home may be unable to escape the risks and stress of continuous sexual harassment even in their local neighbourhood.

In addition to being short-term, many security interventions fail to address the cumulative and insidious effects of day-to-day strains and frequent reminders that the world is unjust. To be effective, security and wellbeing measures require long-term relationships, flexible funding and a deep understanding of the specific work done by an organisation and its inherent risks.

For example, in two countries where the Fund operates – which cannot be named due to security risks – we have found that by helping activists to counter immediate physical threats we have won the trust needed to have deeper, more complicated conversations about wellbeing. These conversations address which day-to-day risks may be necessary or acceptable to get the work done; when pulling back from activism for a period could actually help sustain the work over the long term; and when colleagues need help to take a back seat. As a result of these deeper conversations, activists say they feel more open to ask for the additional wellbeing and security support they need: whether it is relocation, retreat space, support for medical bills, help to generate independent income sources, security cameras, psychosocial support or just flexibility to change what they are doing without affecting funding.

Through these conversations we have found that general, long-term funding makes it easier for frontline activists to openly share realities about emotional strain and security threats. This is because activists know they can adapt their work to changing circumstances without putting continued support in jeopardy.

It’s all relative

It is hard to feel well when you don’t feel safe and it is hard to feel safe when you don’t feel well. To complicate things still further, any individual’s idea of what ‘well’ or ‘safe’ feels like changes drastically depending on their environment and circumstances. Our second lesson at the Fund has been that wellbeing is relative and support must respect cultural differences.

A long-term grantee in Latin America recently went on a two-day meeting away from her country and told us that even this temporary respite from danger fostered deeper strategic thinking and longer-term resilience, simply because she could finally get a good night’s sleep.

The point here is not to force anyone into therapy or a daily yoga practice

At the same time, frontline activists often push back against suggestions that they might need to focus on their own or their colleagues’ wellbeing. There is a certain macho culture amongst many activists which labels psychosocial support as necessary only after a breakdown or for those who see themselves as victims. To many, thinking about wellbeing can feel frivolous and selfish: our communities are under attack as we speak, so what if we have nightmares and can’t relate to our kids?

The funder-grantee relationship itself can limit openness. As mentioned above, some frontline groups are reluctant to share emotional needs for fear their funder will yank support or believe they are incapable of delivering on a funded project – which may very well be the case where trauma is untreated.

For all these reasons, funders and allies of frontline activists must understand local stigma and practices around wellbeing. We should use our position to make suggestions, based on our experience with other partners – not impose pre-determined solutions. In many of the countries where the Fund works, counselling and mental health support are viewed with deep suspicion. The broader body-mind awareness culture that has gained popularity in the global north in the past couple of decades is seen as the refuge of those who just aren’t strong enough.

The point here is not to force anyone into therapy or a daily yoga practice, but rather to stimulate an ongoing conversation between activists, allies and funders which allows all to see the emotional strain of the work, makes seeking support normal and provides an assortment of possible mitigation strategies – which may be different across cultures and regions.

We are all in this together

In my two decades working for international human rights and social justice organisations, I have watched colleagues getting sick with worry, trauma and guilt, often with little more support than collegial compassion and a shared sense that this is just how it is. I myself remember calling peers late at night during my research or advocacy trips, from phone booths in bus stations and on deserted public squares (before affordable international cellphone service was available), to talk about what had just happened and how best to stay safe.

While these calls were soothing, the makeshift networks we cobbled together amounted to neither risk mitigation nor care. They were an expression of friendship: necessary but not enough. Some of this is changing, with more formal structures being put in place at the international level. But the recent crisis over alleged bullying and a toxic work environment at Amnesty International highlights just how far we still have to go.

Funders and other allies to frontline groups are not exempt from stress: we too have full workloads and exist in a culture that celebrates overwork and burnout as a badge of honour. In fact, a 2019 UK survey shows that 80 percent of charity workers have experienced workplace stress in the past 12 months. At the end of the day, if we are not willing to take our own security and wellbeing seriously, no one will trust we have theirs in mind.

Perhaps most importantly, we have learned that true security and wellbeing requires an ongoing culture of learning. It might even require a fundamental reboot of the way we work. Some funders are beginning to question the conceptual framing of holistic security and wellbeing: this is not just about being safe and feeling good, but rather about the sustainability of the work itself. Flexibility, collectiveness, inclusion, diversity, respect and self-awareness are strategies for achieving this, as well as being at the core of a world where human rights are defended.

When Health Care Providers Refuse Care, Whose Rights Are At Stake?

@RHRealityCheck

Recently, an appeals court in Scotland ruled that a wide range of service providers have a right to object to helping with the provision of abortions, even if the care they provide is not directly related to the termination of a pregnancy. In the original ruling, last year, the duties carried out by the two Catholic midwives who brought the case had been considered so removed from the actual abortion that there could be no objection. The appeals court, however, disagreed. Everyone even tangentially involved, it said, has the right to object to providing a wide range of services. The only exception would be life-saving care.

This ruling highlights issues that have relevance beyond Scotland.

The tragic death of Savita Halapannavar in Ireland last year crystallized that no one really knows for sure when a woman is dying from pregnancy-related complications. Over the years, I have interviewed dozens of medical providers in countries with restrictive abortion laws. A key concern for the vast majority of them was how to make sure their actions were legal. Those working in countries where only life-saving abortions are permitted often expressed fear that they would either turn too many women away, with fatal consequences, or ultimately lose their license for providing care to someone who wasn’t “dying enough.”

Let’s apply this notion in a context where anyone involved, however tangentially, in the provision of abortion services, can refuse to treat a woman who is not dying.

This situation raises questions which, regardless of the answers given, compromise quality care. Who gets to determine how lethal each pregnancy is? Can a treating doctor compel assisting midwives or nurses to intervene if she or he believes the patient otherwise will die? And would midwives and others have the right to sue if they had been compelled to help provide an abortion to a woman who ultimately survived? There are no good answers to these questions, and any regulatory solution would almost inevitably lead to substantial delays in care.

Another key concern with a broadly defined right to conscientious objection in the context of health care is access to care in remote—or sometimes not so remote—areas. In the United States, much anti-choice activism is directed at making abortion impossible rather than illegal. Legislators, judges, and other officials in states including Mississippi, Virginia, and North Carolina have made it their goal to run every last abortion provider out of their state. Already, 35 percent of the U.S. population lives in counties without an abortion provider.

Moreover, broad conscientious objection clauses in combination with the stigmatization of abortion generally can stifle the provision of care anywhere. In small communities where everybody knows each other and where abortion is thought of as “evil,” doctors, nurses, and midwives often object to providing care out of fear rather than faith. After all, they still have to make their living where they are.

When I researched access to abortion for rape victims in Mexico, I came across various innovative “solutions” to this problem. In one area, abortion teams were circulated between public hospitals to ensure that no one had to provide care in his or her home town. In another, abortions were provided with the knowledge only of the senior-most officials at selected hospitals, with the result that many women in need of urgent care were turned away because “we don’t do that here” (even at hospitals where they, in fact, did).

Neither of these approaches solved the underlying problem: that abortions are seen as separate from other medical care (which they are not), and that abortion providers are considered different from other medical providers (again, not true). As a result, patients had to seek legal care in a clandestine manner, and in many cases the additional option of conscientious objection for anesthesiologists or nurses—who were not part of the core teams—made abortions virtually impossible to obtain.

Everyone has the right to freedom of thought, religion, and conscience. But international human rights standards do not protect our right to express those thoughts or that conscience in a manner that infringes on other people’s human rights. The more I learn about the concrete repercussions of conscientious objection in the context of health care, the more it is clear to me that there is no room for it. Ultimately, if you don’t want to provide the obstetric or gynecological services your patient needs—which may include an abortion—maybe you should choose another field of specialty.

Giving Thanks For Times the United States Has Fought Back Against Discrimination

@RHRealityCheck

It’s that time of year again: turkeys get pardoned or, more frequently, eaten. Malls get raided. Football gets ignored. Meanwhile, life goes on. And while it is easy to be cynical and disheartened by global news in light of so much hostility and inhumanity, for those of us living in the United States, this is also a time for giving thanks.

It is in that spirit that I have gathered a list of some of my favorite pieces of U.S. news on overcoming discrimination over the past couple of months:

• On April 9, 2012—Equal Pay Day—we could celebrate that the pay gap between Latina and black women and men had been reduced slightly compared to the year before. The over-all pay gap between men and women stayed more or less then same. (Of course, in June 2012, Senate Republicans blocked a bill that would have created better remedies for workplace discrimination through unequal pay by banning companies from retaliating against workers who ask about pay disparities, and by permitting punitive damages where discrimination is proven. But for now, let’s be thankful that the race/gender pay gap is diminishing).

• August 1, 2012, marked the day the provision of the Affordable Care Act that requires employers and insurers to cover preventive health care services, including contraception, in their policies without a co-pay took effect. This, in particular, is good news for women, because women often are stuck with the bulk of contraceptive responsibilities.

• In September 2012, a national study (citing 2011 data) was published, showing that lesbian, gay, bisexual, and transgender youth (LGBT) in U.S. school face less harassment than they used to. Granted, a whopping third of LGBT youth still say verbal harassment or bullying takes place often or frequently, which is outrageous (and probably reflects under-reporting). Still, given the fact that this number is down from almost 41% in 2009, it is certainly good news.

• In early November 2012, U.S. voters in four states came out in support of marriage equality, passing same-sex marriage in Maine, Maryland, and Washington state, and rejecting a constitutional amendment to define marriage as between one man and one woman in Minnesota. It should be obvious why this is good news, despite the fact that same sex couples still are denied equal rights at the federal level.

• Also in November 2012, the American College of Obstetricians and Gynecologists, the national OB/GYN organization of the United States, recommended that oral contraception be made available over the counter. This is great news, if translated into reality, especially since it will mitigate some of the consequences when employers don’t want to offer comprehensive health insurance to their employees.

• And last but not least, the U.S. Court of Appeals for the Sixth Circuit declared that Michigan’s ban on affirmative action policies is unconstitutional. Or put differently: there is nothing discriminatory about seeking a race (or gender) conscious way to overcome entrenched inequalities.

You may have noticed that none of this news is unpolluted. For every thanks we give, there is another mountain to move.

I am, however, an eternal optimist. Perhaps the best news of all is that when we look at gender and race discrimination in the United States over the past 4 or 5 decades, while it is still prominent and rife, it is gradually becoming less and less acceptable in law and in practice.

This year, for Thanksgiving, I celebrate Title VII of the Civil Rights Act of 1964: it’s been almost half a century since Congress codified the fact that we are all equal, at least on paper. I trust it won’t take us another 50 to really make it a reality.