Discrimination - Bill of Health

Hands with blue protective nitride gloves holding N95 respirator.

A Patient’s Right to Masked Health Care Providers

July 20, 2023July 19, 2023 Katherine Macfarlane Leave a comment

By Katherine A. Macfarlane

In May 2023, Mass General Brigham instructed its patients that they “cannot ask staff members to wear a mask because our policies no longer require it.”

Following patient protests, the hospital updated its policies with an imperfect fix, announcing that “patients can ask, but providers determine when and if masking in a particular situation is clinically necessary.”

This episode highlights the uneasy circumstances that people with disabilities face in the U.S. while accessing essential care: On the one hand, the law surrounding reasonable modifications in health care is well-settled. On the other, the practical reality of U.S. health care leaves little room for individualized accommodation and self-advocating patients vulnerable to retaliation.

Surgeon and anesthetist doctor ER team with medical clinic room background.

On Experiencing IBD as a Woman

June 7, 2023June 7, 2023 Amalia Sweet Leave a comment

By Amalia Sweet

At the end of last summer I stopped eating. It wasn’t that I wasn’t hungry — I was, constantly — but rather that pretty much everything I tried to put in my stomach triggered excruciating abdominal pain.

While still in Chicago where I was working toward my master’s degree, I went to University Health Services. When tests revealed I was anemic but free of ulcers and Celiac disease, they suggested I work to reduce my stress and follow up with a gastroenterologist when I returned home to Boston later that month.

I called every medical practice I could think of in the greater Boston area and no one had availability sooner than four months out. Without a primary care physician and desperate for a diagnosis, I went to the ER. In spite of my anemia and the fact that I had lost a scary amount of weight in a short period of time, the ER refused to provide a prioritized referral and told me my symptoms were a product of me being sedentary when in fact I was sedentary because of my symptoms.

Public Health Law and Civil Rights Laws Must Work Together to Rise to the Challenge of Long COVID

March 21, 2023March 21, 2023 The Petrie-Flom Center Staff Leave a comment

By Elizabeth Pendo

Amid the ongoing COVID-19 pandemic, the need for public health laws and policies that align with and reinforce civil rights protections for disproportionately impacted populations is greater than ever. In particular, disability rights laws will be critical for responding to the millions of Americans who experience lasting or recurring symptoms after acute COVID-19 infection (commonly referred to as “long COVID”). This article will discuss the importance of the Americans with Disabilities Act (ADA) in protecting the rights of people with long COVID and other disabilities in the workplace, in health care, and in disability and other benefits in order to chart an equitable path forward.

person walking away from a surgical mask lying on the ground.

Personal Crusades for Public Health

February 14, 2023February 13, 2023 Katherine Macfarlane Leave a comment

By Katherine Macfarlane

Public health in the U.S. has collapsed. In its place, we are left with an insufficient, impoverished alternative: personal crusades. This essay describes the cost of casting aside what is best for the public’s health in favor of individual choice, especially to those who are high-risk for serious illness or death from COVID-19. It explores how they must negotiate public health measures on their own.

The Mask-Optional DEI Initiative

September 20, 2022September 20, 2022 The Petrie-Flom Center Staff Leave a comment

By Matt Dowell

Recently, I remotely attended a mask-optional, in-person meeting where campus leaders proudly proclaimed that DEI (diversity, equity, and inclusion) is my college’s “top priority.”

As a disabled faculty member who writes about disability access in higher education, I found myself considering how to make sense of such a statement — how seriously to take such statements, how much to care that such statements are being made.

US map made of many people with empty space in the center that resembles a single spiky corona virion.

The Institutionalization Missing Data Problem

September 15, 2022September 15, 2022 The Petrie-Flom Center Staff Leave a comment

By Doron Dorfman and Scott Landes

One of the most important lessons from the ongoing COVID-19 pandemic needs to be about health surveillance of marginalized health populations — indeed, “who counts depends on who is counted.”

As disability scholars who use data and empirical tools in our work, we want to remind decision makers that advancing just law and policy depends on the systematic collection of accurate data. Without such data, our laws and policies will be fundamentally incomplete.

Magazines on wooden table on bright background.

Citational Racism: How Leading Medical Journals Reproduce Segregation in American Medical Knowledge

June 7, 2022June 7, 2022 The Petrie-Flom Center Staff Leave a comment

By Gwendolynne Reid, Cherice Escobar Jones, and Mya Poe

Biases in scholarly citations against scholars of color promote racial inequality, stifle intellectual analysis, and can harm patients and communities.

While the lack of citations to scholars of color in medical journals may be due to carelessness, ignorance, or structural impediments, in some cases it is due to reckless neglect.

Our study demonstrates that the American Medical Association (AMA) has failed to promote greater racial inclusion in its flagship publication, the Journal of the American Medical Association (JAMA), despite an explicit pledge to do so.

London, England, UK, January 22nd 2022, Long covid symptoms sign on pharmacy shop window UK.

Mobilizing Long COVID Awareness to Better Support People with Acquired Disabilities

April 29, 2022April 29, 2022 The Petrie-Flom Center Staff Leave a comment

By Marissa Wagner Mery

Long COVID exposes an often-unacknowledged facet of disability: that one is far more likely to develop a disability than be born with one.

Estimates suggest that, at present, approximately 10 – 20 million Americans are now afflicted with the array of debilitating symptoms we now call Long COVID, which include fatigue, shortness of breath, and cognitive dysfunction or “brain fog.”

The upswell of advocacy and awareness around Long COVID should be mobilized to call attention to and address the challenges faced by newly-disabled adults, particularly with respect to employment.

Long COVID and Physical Reductionism

April 19, 2022April 29, 2022 Leslie Francis Leave a comment

By Leslie Francis and Michael Ashley Stein

Like plaintiffs with other conditions lacking definitive physiological markers, long COVID plaintiffs seeking disability anti-discrimination law protections have confronted courts suspicious of their reports of symptoms and insistent on medical evidence in order for them to qualify as “disabled” and entitled to statutory protection.

We call this “physical reductionism” in disability determinations. Such physical reductionism is misguided for many reasons, including its failure to understand disability socially.

Ironically, these problems for plaintiffs may be traced to amendments to the Americans with Disabilities Act (ADA) that were intended to expand coverage for plaintiffs claiming disability discrimination. Three provisions of the Americans with Disabilities Act Amendments Act (ADAAA) are appearing especially problematic for long COVID patients in the courts.

HVAC tech wearing mask and gloves changing an air filter

Providing Clean Air in Indoor Spaces: Moving Beyond Accommodations Towards Barrier Removal

April 1, 2022April 1, 2022 Jennifer S. Bard Leave a comment

By Jennifer Bard

One of the most persistently frustrating aspects of the Americans with Disabilities Act (ADA), as currently applied to schools and workplaces, is its emphasis on the eligibility of qualifying individuals for accommodation, rather than on population-based removal of barriers to participation.

This individualized approach has always been an uncomfortable fit, given the reality of changes in physical function throughout the lifespan, and is a particularly unsatisfying model for the collective threat of COVID-19, a novel virus that has not only caused at least a million deaths in the United States, but is likely to trigger a variety of disabling sequelae in many (perhaps most) of those who recover.

So far, however, there is mounting evidence that individuals who seek to protect themselves from infection with COVID-19 in school or in the workplace (very much including those who work in schools) are going to have to do based on their individual susceptibility to contracting COVID-19 or to being disproportionately affected by an infection.

Tag: Discrimination