Research & Writing

HPOD also continued its ongoing research and writing activities to produce salient information for policymakers and civil society stakeholders to address key disability rights issues on education, health care, ethics, supported decision-making, climate change, and beyond.

Education

HPOD collaborated with the University of California Los Angeles’ WORLD Policy Analysis Center to produce a policy brief on how school districts addressed the challenges caused by the COVID-19 pandemic during the 2020-21 school year. The disruptions to in-person learning precipitated by the pandemic had disproportionate effects on students with disabilities. Numerous reports indicated that students with disabilities, their families, and caregivers faced myriad barriers to accessing quality educational and related services due to school districts’ rapid transitions to remote learning. HPOD and WORLD Policy Analysis Center researchers found substantial variation across school districts in their approach to remote instruction, compensatory services, and whether students with disabilities were prioritized for returning to the classroom before other students. Many school districts’ COVID-19 responses for SWDs included one or more of 4 principal adaptations; however, no two of the 24 districts surveyed adopted the same combination of strategies, underscoring the effects of absent federal guidelines. Access the full brief here.

Climate Justice

HPOD Senior Associate Dr. Penelope J.S. Stein and Executive Director Professor Michael Ashley Stein published a pair of articles in The Lancet Global Health and Human Rights Quarterly urging greater disability inclusion in climate change mitigation and adaption measures. They point to a pair of cases pending before the European Court of Human Rights casts in stark relief the disproportionate effects of climate change on persons with disabilities and older persons. Verein Klimaseniorinnen Schweiz & Others v. Switzerland was brought by a group of older women in Switzerland who allege that the state is not doing enough to cut greenhouse gas emissions. Switzerland's inaction consequently exposes them to life-threatening heatwaves in violation of the right to life and the right to private and family life enshrined in Articles 2 and 8 of the European Convention on Human Rights. A similar case filed by an Austrian man with a temperature-dependent form of multiple sclerosis argues that the Austrian government's inability to effectively combat climate change violates his rights under Article 2 and 8 is pending.

As Professor Stein commented for a news article published in The Hill on the exclusion of an Israeli minister who uses a wheelchair from the COP26:

“It’s of course unfortunate that [the minister] was left out … and it’s right that attention’s being paid to it, but what’s really more of an issue is the way people with disabilities have been left out of the climate change agenda and dialogue. Although we’re all going to suffer, and do suffer, from climate change, right now and in the future, the mortality rate for people with disabilities from natural disasters is as high as four times that of non-disabled persons.”

Health

HPOD has also undertaken research specific to the disparate impacts of the COVID-19 pandemic on persons with disabilities. HPOD Senior Associate Ari Ne’eman and Executive Director Professor Michael Ashley Stein, along with others, published study in the Journal of Health Politics, Policy and Law that analyzes how many states' triage protocols that determine how to allocate scare lifesaving health care resources, commonly called Crisis Standards of Care plans (CSCs), changed in response to disability rights advocacy. Their study of 35 states found that disability rights views were not well represented in CSCs that were either not updated or updated early in the pandemic. However, states that revised their plans later in the pandemic were more aligned with advocates' priorities. Notwithstanding some changes, many CSCs still include concerning provisions, with dire implications for both disability rights and racial justice.

Beyond the pandemic’s impact on patients with disabilities, HPOD Executive Director Professor Michael Ashley Stein joined HPOD associate Dorothy W. Tolchin, an Instructor in Physical Medicine and Rehabilitation at the Harvard Medical School (HMS) and Benjamin Tolchin of the HMS Center for Bioethics to advise clinicians on how to overcome stigma in the AMA Journal of Ethics when treating patients for conditions without biomarkers. Taken together, these conditions—which include functional neurological disorders, fibromyalgia, chronic fatigue syndrome, and chronic pain syndromes—contribute to up to roughly half of primary care and specialty clinic visits. Yet stigma too often influences how clinicians diagnose and treat these conditions, to their patients’ detriment.

Supported Decision-Making

Persons with intellectual disabilities around the world have similarly called for greater recognition of supported decision-making, which Article 12 of the CRPD protects, as a means to promote their dignity and autonomy. Many persons with intellectual and other disabilities have had their right to make important decisions about their lives taken from them, through both formal adjudications and less formal policies and practices. In a recent Current History piece by HPOD associate Chester Finn, Executive Director Professor Michael Ashley Stein, and Director of Advocacy Initiatives Hezzy Smith, Finn puts his finger on the apparent contradiction underlying these restrictions:

“Why do you have to take someone’s rights away in order to help someone make decisions? It just doesn’t make any sense. Rights protect people. How does taking those away help someone? I think they’re just using the disability against the person. … What good does it do to say someone is too disabled to have rights? … People don’t come out and say it but in practice that’s what they do.”

Calls for supported decision-making are slowly beginning to influence the work of professionals and academics in the field. One such area is research, where persons with intellectual disabilities face barriers to participating due to rules regarding informed consent. Professor Stein, HPOD Senior Associate Ari Ne'eman, and colleagues at Harvard Medical School, Mass General Brigham and Brigham and Women’s Hospital have argued in The American Journal for Bioethics that researchers and ethics reviewers should incorporate supported decision-making into research protocols in ways to prevent the exclusion of persons with intellectual disabilities.

Ethics

HPOD Chair William Alford published a critical essay of popular ethicist Peter Singer’s writings on persons with intellectual and other disabilities in the American Journal of Law and Equality.  Well known for having made a powerful case for a vastly greater individual and societal commitments to alleviating global poverty, Singer is also well known for his controversial views regarding the lives of “profoundly intellectually disabled humans,” which have been roundly criticized by disability rights advocates for devaluing disabled lives. Alford adds to this body of critique a careful analysis on Singer’s own terms that dissects how Singer’s stance on global poverty alleviation enters into sharp tension with his treatment of disability, revealing internal inconsistencies that warrant revision.

With regard to medical ethics, HPOD Executive Director Professor Michael Ashley Stein co-authored a piece with HPOD associate Dorothy W. Tolchin and other Harvard Medical School colleagues in the AMA Journal of Ethics arguing that ableism in medical schools' admissions processes and expectations set by technical standards for the physician workforce can perpetuate historical patterns of exclusion in health care settings. For example, medical students interviewed for this article cite "alarming ableist tendencies in admissions processes" that confirm other reports. One medical student with disability described a conversation with an admissions officer as follows, illustrating the attitudinal barriers that medical students with disabilities face:

“He highly recommended that if I receive any interview invitations, if at all possible, I should wear the prosthesis rather than come in the wheelchair.”

Similar biases affect whether physicians with disabilities themselves seek appropriate health care treatment. As HPOD Executive Director Professor Michael Ashley Stein and colleagues observe in The New England Journal of Medicine, structural barriers inhibit disclosure, with deleterious effects on physicians with disabilities' access to care. Licensing questions related to current or past diagnoses or treatment for mental disabilities that don’t affect physicians’ current functional abilities are irrelevant to their professional competence and therefore illegal under U.S. disability rights laws. Yet, a 2016 national analysis of medical licensing applications revealed that two-thirds of states have application questions that do so. Physicians in these states are more reluctant to seek formal medical care for a mental disability because of fears about repercussions, which may include unmerited license investigations that require substantial time, energy, and money for legal representation and clinical consultations.