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.
Three Core Takeaways from the UNCRPD for Pandemic Preparedness and Response
1. Triage or other sorts of critical care policies that specify differential treatment on the basis of disability alone are in conflict with the UNCRPD.
Article 4.1.E states that states parties should “take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise” (see also 5.2 and 11).
Policies could be developed that allow differential treatment options depending upon specific medical information. For example, if there is one ventilator left and two patients are indicated for ventilator use, specific information about the likelihood of response to intubation could, arguably, be used to determine which patient gets it.
Contrast this particularized approach to one that instead stipulates “those with pre-existing respiratory impairments should be de-prioritized during crisis standards of care.” On our interpretation of the UNCRPD, the latter is unjust and discriminatory while the former is, at least arguably, just.
Further, judgments based upon long-term predictions are not appropriate. This is in line with the OHCHR’s guidance on the subject matter, which advises against “triage guidelines for allocation of scarce resources with exclusion criteria based on certain types of impairment, having high support needs for daily living, ‘frailty’, chances of ‘therapeutic success’, as well assumptions on ‘life-years’ left should they survive.
Solomon et al. expand on this, arguing that “the ability to predict long-term survival is poor and therefore susceptible to bias. Furthermore, many disadvantaged populations have reduced life expectancy, and triage protocols should not exacerbate health inequities.” Given the evidence suggesting that quality-of-life metrics are biased and negatively impact equity of care for disabled people, they agree that “scoring systems using quality-adjusted or disability-adjusted life-years should not be used.” They do suggest, however, that “near-term survivability…can be assessed independently from disability,” where “near-term” picks out 12 months or less from discharge.
2. In the spirit of Article 4.1.H, official information concerning the pandemic must be made as accessible as possible.
This means including closed captioning as well as sign-language interpreters for all pandemic-related communications; it also means ensuring the availability of high-speed internet to all people as well as accessibly designed web interfaces (usable for those with screen readers, etc.) There are many resources available to help various bodies increase the accessibility of their communication strategies.
3. People with disabilities should be included in the development and review of pandemic preparedness and response at all levels and with respect to all relevant institutions.
Article 29.B specifies that state parties shall “promote actively an environment in which persons with disabilities can effectively and fully participate in the conduct of public affairs, without discrimination and on an equal basis with others, and encourage their participation in public affairs.” This includes any potential negotiations of new legal instruments relating to pandemics.
For more detailed analyses and suggestions, including those that take into account broader economic concerns, we recommend the following pieces:
- United Nations, “Policy Brief: A Disability-Inclusive Response to COVID-19”
- United Nations OHCHR, “Covid-19 and the Rights of Persons with Disabilities: Guidance”
- Banks et al., “Disability-Inclusive Responses to COVID-19: Lessons from Research on Social Protection in Low- and Middle-Income Countries”
- Guidry-Grimes et al., “Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care”
- Solomon et al., “Covid-19 Crisis Triage—Optimizing Health Outcomes and Disability Rights”
From Civil Rights to Human Rights
It is worth noting that while the United States of America signed the UNCRPD in July 2009 during the presidency of Barack Obama, it has not been ratified by the United States Senate. The Leadership Conference on Civil and Human Rights notes, “After four years [2016-2020] of an administration that has attacked disability rights through its policies and appointees…the United States must make its position on disability rights clear. Ratifying CRPD represents an opportunity to take bipartisan action and unite with the rest of the world in advancing the civil and human rights of people with disabilities everywhere…Disability rights are civil and human rights. Now, more than a decade after the United States signed the treaty, it’s time to finally make a global commitment to protecting disability rights by ratifying it.”
While civil rights/anti-discrimination laws like the Americans with Disabilities Act in the U.S. or the Disability Discrimination Act in the U.K. are certainly steps in the right direction, they are insufficient to forward disability justice and to enforce human rights that are inviolable regardless of ability status. National responses are limited. We encourage the development, implementation, and enforcement of international laws designed to uphold disability rights and realize disability justice across borders. Whether during times of crisis or times of calm, defending disability rights is essential to all human rights efforts at local, national, and international levels.
Joel Michael Reynolds is Assistant Professor of Philosophy and Disability Studies at Georgetown University, Senior Advisor at The Hastings Center, and Senior Research Scholar at The Kennedy Institute of Ethics.
Rosemarie Garland-Thomson is Professor Emerita of English and Bioethics at Emory University and Senior Advisor and Fellow at The Hastings Center.