hospital equipment

The Import of the UNCRPD and Disability Justice for Pandemic Preparedness and Response

By Joel Michael Reynolds and Rosemarie Garland-Thomson

During the COVID-19 crisis, many nation-states did not consult or substantively take into consideration treaties protecting the rights of people with disabilities when developing their pandemic responses.

For example, the United Nations’ 2008 Convention on the Rights of Persons with Disabilities (UNCRPD) is an international human rights treaty intended to protect the rights and dignity of all persons with disabilities. It articulates principles of non-discrimination (see especially Articles 2, 3, and 5) and broader obligations upon specific parties, such as states parties, which are obligated to protect the rights and freedoms of people with disabilities (see Article 4, et al.).

The failures to uphold these principles and obligations during the COVID-19 pandemic were met with a swift response. The Office of the United Nations High Commissioner for Human Rights (OHCHR) produced guidelines on COVID-19 and the rights of persons with disabilities in April of 2020, as well as a policy brief in May of that year.

This commentary outlines three of the more important considerations for international pandemic lawmaking — both for specific instruments and wider deliberation — with respect to people with disabilities in general and the United Nations’ 2008 Convention on the Rights of Persons with Disabilities (UNCRPD) in particular.

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Lady Justice blindfolded with scales.

Health Justice Can’t Be Blind

By Daniel E. Dawes

“Justice is blind.” We have all heard this phrase before, and seen the iconic representation: the blindfolded Lady Justice.

That blindfold is supposed to symbolize impartiality. It represents our strict subscription to the notion that impartiality and objectivity are the principles upon which our system is built and by which it is protected. This notion that justice is blind is one rooted in equality.

But justice should not always be blind. Rather than prioritizing equal treatment, sometimes justice demands that we treat individuals differently to ensure equal outcomes. This notion of justice is rooted in the principle of equity.

Put simply, equity takes fairness as its aim. Where equality entails the equal (i.e., impartial) treatment of individuals, equity demands a nuanced approach to ensure equal outcomes.

To achieve justice in the realm of health, our focus must be on equity, and not on blind equality.

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Patient receives Covid-19 vaccine.

The Target of Health Justice

By Sridhar Venkatapuram 

As we amplify, further develop, and advise in the realizing of health justice, there would be much benefit in clarifying the basic units of moral concern.

This call for more specificity relates to both who is the primary unit of moral concern (individuals, communities, nation-states, etc.) as well as what it is that we care about in relation to them (i.e., liberties, resources including health care, basic needs, respect, opportunities, capabilities, relationships, etc.).

In the current context of the COVID-19 pandemic, where vaccines have become the preeminent goods of value worldwide, I focus my discussion here on how distributing vaccines equitably at the level of geographical units such as districts or nation-states may obfuscate or tolerate injustices, as well as provide suboptimal control of the pandemic.

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Los Angeles, California, United States. June 23, 2021: #FreeBritney rally at LA Downtown Grand Park during a conservatorship hearing for Britney Spears.

How Adult Guardianship Law Fails to Protect Contraceptive Decision-Making Rights

By Kaitlynn Milvert

After Britney Spears testified this past summer about her struggle to have her intrauterine device (IUD) removed while under conservatorship, many commentators posed a simple, but critical question: Can conservators (or guardians) make contraceptive decisions for those under their care?

Attempting to answer that question reveals an area of state guardianship law where guardians’ authority is particularly murky and ill-defined. Reform is needed to address the restrictions on reproductive decision-making rights that adults under guardianship currently face.

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Group of Diverse Kids Playing in a Field Together.

Health Justice is Within Our Reach

By Dayna Bowen Matthew

Health justice is the outcome when law protects against the unequal distribution of the basic needs that all humanity requires to be healthy. Angela Harris and Aysha Pamukcu define health justice in terms of ending the subordination and discrimination that produce health disparities.

I first saw and experienced the need for the work to achieve health justice as a child. I grew up in the South Bronx, insulated from the absence of health justice until the fourth grade, when I began attending private school. Before then, I had no idea that the racially, ethnically, and economically segregated society in which I lived, played, and attended school and church was any different than the society that existed unbeknownst to me outside of my zip code.

I crossed interstate highway exchanges daily as I walked to P.S. 93, oblivious to the fact that other kids did not breathe the exhaust fumes and toxins from nearby waste transfer stations that tainted the air where my mostly Black, Dominican, and Puerto Rican neighbors lived. I had no idea that clean, breathable air was inequitably distributed in this country by race.

It was not until I left the South Bronx to attend school in Riverdale that I realized other families had an array of housing options to choose from that were different than mine. In fourth grade, when my family began voluntarily bussing me to private school, I learned that the housing available to families extended beyond the racially segregated shotgun row house I lived in, the stinky, dimly lit apartment buildings on my corner or “the projects” where my grandparents lived in Harlem. Who knew there were sprawling homes atop manicured lawns and opulent apartments overlooking Central Park available throughout other parts of the city? Who knew that even modestly priced apartments could be located near green spaces, well-stocked grocery markets, and schools that prepared kids well for college? Not me. I had no idea until I began to see that decent, clean, affordable housing, and resource-rich neighborhoods are inequitably distributed by race and ethnicity in America.

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UN United Nations general assembly building with world flags flying in front - First Avenue, New York City, NY, USA

Legal Capacity and Persons with Disabilities’ Struggle to Reclaim Control over Their Lives

The Health Law, Policy, Bioethics, and Biotechnology Workshop provides a forum for discussion of new scholarship in these fields from the world’s leading experts. Though the Workshop is typically open to the public, it is not currently, due to the COVID-19 pandemic. However, many of our presenters will contribute blog posts summarizing their work, which we are happy to share here on Bill of Health.

By Matthew S. Smith & Michael Ashley Stein

Persons with disabilities face an ongoing struggle to reclaim power and control over their lives.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is an important tool in this struggle.

In mental health care settings, the CRPD has challenged states and practitioners to reject coercive forms of care orchestrated by substitute decision-makers — be they clinicians, family members, or court appointees — in favor of modalities that preserve and privilege individuals’ direct control over their care.

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FLINT, MICHIGAN January 23, 2016: City Of Flint Water Plant Sign In Flint, January 23, 2016, Flint, Michigan.

Digging Deep to Find Community-Based Health Justice

By Melissa S. Creary

Public health interventions aimed at Black and Brown communities frequently fail to recognize that these communities have, over and over, been made sick by the systems that shape their lives.

When we fail to recognize that these problems are happening repeatedly, we are likely to address the most recent and egregious error, ignoring the systemic patterns that preceded it. Public health and technological policy responses that do not address these underlying structural and historical conditions are a form of bounded justice, i.e., a limited response sufficient to quiet critics, but inadequate to reckon with historically entrenched realities.

By only responding to the acute crisis at hand, it is impossible to attend to fairness, entitlement, and equality — the basic social and physical infrastructures underlying them have been eroded by racism.

To achieve health justice, we must move beyond bounded justice. Rather than simply recognizing the existence of underlying social determinants of health, we must do the hard work to create and re-create systems, interventions, policies, and technologies that account for that erosion and offer high-grade reinforcements.

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U.S. Supreme Court

There’s No Justice Without Health Justice

By Yolonda Wilson

Last month the U.S. Supreme Court struck down the eviction moratorium issued by the Centers for Disease Control (CDC). The Court reasoned that, among other things, the eviction moratorium was an overreach by the CDC. That is, even in light of a global pandemic where being unhoused increases one’s risk of acute COVID-19 infection and subsequent serious illness, the Court rejected the CDC’s argument for the connection between housing justice and health justice. The Court raised several telling rhetorical questions in their decision that were intended to show the potentially troubling slippery slope that would commence if the moratorium were allowed to stand:

Could the CDC, for example, mandate free grocery delivery to the homes of the sick or vulnerable? Require manufacturers to provide free computers to enable people to work from home? Order telecommunications companies to provide free high-speed Internet service to facilitate remote work?

Whereas the Court viewed the eviction moratorium as an overreach that would lead to unthinkably absurd consequences for other sectors of social and economic life, a Black feminist conception of justice, as expressed, for example, in the historic statement of the Combahee River Collective, is necessarily grounded in a sense of the importance of community, rather than as a mere collection of individuals who may have little to no connection with or obligations to one another. Though the Court prioritized the interests of landlords and real estate agents, a Black feminist conception of justice foregrounds the needs of the overall community, such that if the well-being of the community depended on free grocery delivery to the sick and vulnerable, then so be it. The community rises and falls together, and so justice must account for the whole, not merely the well-heeled. Implicit in this conception of justice is an understanding that the community can only thrive, can only aspire to a Black feminist conception of justice, to the degree that the community is well or ill.

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abortion protest outside supreme court.

Pregnancy Loss, Abortion Rights, and a Holistic Reproductive Justice Movement

The Health Law, Policy, Bioethics, and Biotechnology Workshop provides a forum for discussion of new scholarship in these fields from the world’s leading experts. Though the Workshop is typically open to the public, it is not currently, due to the COVID-19 pandemic. However, many of our presenters will contribute blog posts summarizing their work, which we are happy to share here on Bill of Health.

By Greer Donley and Jill Wieber Lens

In the summer of 2020, celebrity Chrissy Teigen shared her son’s stillbirth with her tens of millions of followers on social media, including photos of her agony at her son’s simultaneous birth and death.

Teigen and her husband, John Legend, are noted supporters of abortion rights. After Jack’s death, Planned Parenthood tweeted its condolences: “We’re so sorry to hear that Chrissy Teigen and John Legend lost their son, and we admire them for sharing their story.”

Backlash was swift, accusing both Teigen and Planned Parenthood of hypocrisy, questioning how one could believe abortion involves only a “clump of cells,” yet grieve a pregnancy loss.

This anecdote perfectly highlights the perceived conflict between pregnancy loss and abortion rights — that any recognition of loss in the context of stillbirth or miscarriage could cause a slippery slope to fetal personhood.

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elderly person's hand clasped in young person's hands

Vulnerability Theory and Health Justice

By Matthew B. Lawrence

If we want to understand how changes to the law might affect health outcomes, we must remain mindful that the law not only regulates how we behave in the world as it is, but also shapes the institutions and structures that make the world the way it is.

The dominant theoretical frameworks of classical liberalism and behavioral economics obscure this critical relationship.

In this blog post, I suggest that health justice and vulnerability theory fill this theoretical gap, and serve as invaluable, and largely complementary, frameworks for understanding health law and policy.

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