Stacks of books against a burgundy wall

Announcing The Journal of Philosophy of Disability 

The Journal of Philosophy of Disability (JPD) is a new journal devoted to the philosophical study of disability.

Disability is central to human life. As the slogan from disability studies goes: “disability is everywhere, once you know how to look for it.” After a steady stream of scholarship from the 1990s onward, work in the field of philosophy of disability has expanded exponentially. Despite this explosion, there has never been a peer-reviewed journal devoted to scholarship in the field of philosophy of disability. Until now.

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The Disparate Impact of COVID-19 on Individuals with Intellectual and Developmental Disabilities

By James W. Lytle

Katrina Jirik’s compelling post on the dangers posed to people with disabilities if care is rationed during the COVID-19 pandemic powerfully characterizes discriminatory allocation criteria as a form of “updated eugenic thought” that cannot be reconciled with the Americans with Disabilities Act and other anti-discrimination statutes.

I worry, however, that persons with disabilities and other vulnerable populations face an even graver threat:  policymakers may unintentionally adopt policies that neglect to consider the unique needs of persons with disabilities and inadvertently place them at much greater risk.

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empty hospital bed

Disability and Rationing of Care amid COVID-19

By Katrina N. Jirik, PhD

As health care resources grow increasingly scarce amid the COVID-19 pandemic, states, hospitals, and individuals are forced to make tough decisions about the rationing of care. These decisions are often framed in terms of medical and/or legal criteria. However, many people, especially the physicians who make the difficult decisions, realize they have a huge moral component related to perceptions of the value of an individual’s life.

Various states have triage guidelines in place, which differ somewhat, but primarily reflect a utilitarian goal of saving the most people with the least expenditure of finite resources. This is where the societal issue of the value of the life of a person with a disability comes into play.

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hospital equipment

How Triage During COVID-19 Can be Fair to Patients with Disabilities

By Govind Persad

On March 28, 2020, the Department of Health and Human Services issued guidance regarding the application of antidiscrimination law to triage policies — that is, policies for fairly allocating scarce medical treatments, like ventilators, in the COVID-19 pandemic.

Many news outlets incorrectly portrayed HHS as prohibiting triage guidelines from considering disability. But the guidance is more nuanced.

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New technologies are empowering persons with disabilities. But are they Assistive?

Consumer tech has reduced daily friction for countless individuals, making it easier to control households, shop for groceries, and connect with loved ones. These technologies can be especially empowering for persons with disabilities, increasing accessibility and resolving frustrations of everyday activities. You may have seen related news in press releases and popular headlines: “Alexa is a Revelation to the Blind,” “Disabled Americans Deserve the Benefit of Self-Driving Cars,” “Amazon Alexa Can Help People With Autism Do More On Their Own.”

But are these technologies assistive? Disability nonprofit Understood.org defines assistive technology as “any device, software, or equipment that helps people work around their challenges.” Classifying a device or software as assistive technology (and/or related regulatory labels) can lead to insurance coverage and tax incentives. It can change how devices are viewed in healthcare settings and impact product research and design. In this article, we speak with bioethicist and disability scholar Dr. Joseph Stramondo about how to define assistive technologies in today’s consumer tech revolution. 

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Group of people of various ages and ethnicities sitting in a circle talking. At least one of the people is in a wheelchair.

Rethinking Inclusivity in Precision Medicine Research: The Disability Experience and Barriers to Participation

By Maya Sabatello and Paul S. Appelbaum

One of the most important aspects of precision medicine research is its focus on inclusion of diverse groups. The reality is that without cohort diversity, it will be impossible for precision medicine research to deliver on its promise to provide prevention and therapeutic options that are tailored to each individual’s genetic makeup, environment, and lifestyle choices across diverse groups. And, as the scientific community, including the national All of Us Research Program, increasingly has come to realize, for precision medicine to reduce—rather than magnify—health disparities, it is critical to ensure that historically marginalized communities are included in this research endeavor. Read More

The Danger of Speaking for the Dying Patient with “Intellectual Disabilities”

After suffering from Alzheimer’s disease for more than two decades, my grandma quietly passed away at a nursing home in California several years ago. This may sound like a story too common to tell in the United States. However, my grandma never wanted to go to a nursing home in the first place. As someone who spent the majority of her life in China, she only immigrated to the United States to reunite with her family after my grandpa passed. When her conditions first developed, her own children (my extended family who lived with her) considered her a burden and liability, and sent her away against her will – a stark violation of Confucian filial piety cherished in my culture. After being admitted to a public nursing home with very few Mandarin speaking staff and patients, her condition deteriorated rapidly, partly as a result of language barriers and general isolation from family and friends. She soon lost most of her basic functioning and remained in a borderline vegetative state for the last few years of her life.

I could not help but think about my grandma when I read a recently published piece in New York Times. In “A Harder Death for People with Intellectual Disabilities,” Tim Lahey, M.D., argues that current laws make it too difficult for the “loved ones” and legal guardians of patients with “intellectual disabilities” to make end-of-life decisions on behalf of patients who cannot speak for themselves. Based on his own experience with patients in intensive care units, he criticizes the burdensome legal procedures required in some states to allow legal guardians to “decline life-sustaining therapies” and medical providers to “avoid giving unwanted care that isn’t likely to heal” these patients. From his point of view, questions a judge may ask such as “how sure is the guardian or family member of the patient’s wishes?” and “what’s the doctors’ best estimate at a prognosis?” are slowing down the “prompt, patient-centered, bedside care that all of us deserve.” Read More

Prenatal Testing and Human Capabilities

By Aobo Dong

According to Vardit Ravitsky’s paper on “Shifting Landscape of Prenatal Testing,” there exist two competing rationales for prenatal screenings for severe disabling conditions like Down syndrome. The “reproductive-autonomy” rationale justifies screening by invoking a woman’s individual autonomy. In contrast, the “public health rationale” justifies pre-natal screening and termination due to a Down syndrome diagnosis by invoking the costly public health expenditures that must be spent on children born with these disabilities – resembling a utilitarian calculation that minimizes pain and maximizes pleasure for society as a whole. According to Ravisky, the public health rationale creates social pressure that incentivizes women and their families to make the decision to terminate. Thus, the public health rationale is heavily pro-termination, while the individual autonomy rationale could lead women to make decisions in either way. What she proposes as a solution is to combat the public health rationale to allow women to make autonomous decisions free of social pressures, and establish a stronger “informed consent” procedure that better informs the implications of pre-natal screenings and Down syndrome so that women could make the best possible decision for themselves. This blog post will shed more light on this issue by invoking Martha Nussbaum’s capabilities approach to human rights.

A central feature of the capabilities approach is “adaptive preference” that measures the relative success in achieving the 10 core capabilities cross nation-states and social classes. Nussbaum is aware of the fact that “individuals vary greatly in their need for resources and in their ability to convert resources into valuable functioning.” Therefore, it is not even adequate to provide an equal amount of educational resources for one student with Down syndrome and another without any learning disability. Nussbaum would argue that the child needs something even more than a formal education, a proposal that could be much more costly than a regular education alone. She would not assume that a student with the condition must have a low self-worth; instead, she would consider the factors in the child’s social environment that may have caused such low self-esteem, and direct resources to improve the child’s own sense of worth and maximize her future potentials in living a fully human life. This is consistent with capability 7B (respect), which stresses their ability to “be treated as a dignified being whose worth is equal to that of others.” Read More

Emotion and Pain – Beyond “All in Your Head”

By David Seminowicz, Principal Investigator, Seminowicz Pain Imaging Lab, Department of Neural and Pain Sciences, University of Maryland

A potential difficulty, but also an opportunity, relating to using neuroimaging evidence in legal cases arises from the difficulty brain researchers have in separating emotional and physical pain. We know that pain and emotion are tightly linked. In fact, “emotion” is in the very definition of pain. The IASP definition of pain is: “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”  Yet, the legal system deals with “physical” versus “psychiatric” versus “emotional” pain in different ways.

Chronic pain is associated with anxiety, depression, and stress. These factors can exacerbate the pain, and pain can exacerbate them. Pain’s sensory and emotional components connect in a “feed-forward” cycle. It may not be possible to entirely separate the sensory and emotional components of pain, biologically or experientially. But it might be necessary for the purposes of legal cases, as important areas of law create sharp distinctions between physical and emotional, or body and mind.

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Is Pregnancy a “Disability” in the Ebola Epidemic?

By Kelsey Berry

Much of the recent Ebola coverage has brought to the forefront principles of disaster triage and served as a reminder of the inescapability of rationing health care resources. A piece in The New Yorker recently highlighted the plight of pregnant women and their apparent exclusion from standard Ebola wards in Sierra Leone. Professor and Ethicist Nir Eyal at Harvard Medical School was quoted discussing the role of disaster triage guidelines in allocating resources for Ebola in the case of pregnant women.

Pregnant women have long been identified as more vulnerable to viral infections than other healthy adults, due perhaps to immune system changes occurring naturally during pregnancy. This may have accounted for the increased mortality rate among pregnant women during the 2009 H1N1 influenza pandemic in the US (17% in pregnant women vs. 0.02% in the general population), and it may impact Ebola survival rates as well. A smaller 1995 Ebola outbreak in Kikwit, Zaire had a case fatality rate among pregnant women of 93%, and anecdotal accounts from the current epidemic in Sierra Leone state a 100% case fatality rate. Recent figures from West Africa put the case fatality rate in the general population at 70%. These statistics, among other concerns for resource utilization, lead to an ethical dilemma: whether and how to allocate scarce resources to pregnant women in the present ebola epidemic in West Africa.

If the mortality rates from Kikwit are accurate, Dr. Eyal notes that it means that, “what’s needed to justify giving regular priority to a pregnant woman is a willingness to allow six other people to perish to save her.” But, he notes, the permissibility of excluding pregnant women is sensitive to these rates; if they are wrong, than so too may be triaging pregnant women last.  Read More