Associate Professor, Faculty of Medicine
University of Calgary
An earlier version of this blog was originally published on the World Council of Churches website on June 10, 2020, which is an abridged and edited version of the original, published on Gregor Wolbring’s blog on May 19, 2020
Ethics is about what one ought to do. Many secular and non-secular ethical theories and principles exist to give us guidance. Which ethical theories and principles are employed to understand and respond to the points of impact of COVID-19 on disabled people?
There are many different contemporary ethic discourses, ranging from medical ethics to artificial intelligence ethics, robotic ethics, and environmental ethics. In the complex world of societal change, many of these kinds of ethics discourses are relevant to the lives of disabled people during and in the aftermath of COVID-19.
Disabled people can be impacted by COVID-19 and its aftermath in so many ways:
- As potential users of COVID-19 protection measures (whether the protection product is accessible for use by disabled people or others
- As potential non-therapeutic users (consumer angle of non COVID-19 products)
- As potential consumers of COVID-19 knowledge
- As potential producers of COVID-19 knowledge
- As potential therapeutic users (as patients, getting treated)
- As potential diagnostic targets (diagnostics to prevent “disability,” which might increase in the aftermath of COVID-19 due to changing family circumstances)
- By COVID-19 protection guidelines (staying at home, no visitors in group home, etc.)
- By changing societal parameters in the aftermath of COVID-19 (how we act toward each other)
- By changing societal parameters caused by COVID-19 aftermath (how do certain companies act toward disabled people?)
- By more non-disabled people competing with disabled people for existing jobs after COVID-19
- Increasing autonomy of a product or process (e.g. AI/ML judging disabled people, see algorithm bias in health insurance and AI hiring people)
Where are the disabled in our public discourse?
At root, these are ethical concerns, matters that should be deliberated in our public discourse. But how much have the concerns of the disabled and the people linked to them really been reflected in our public media?
I looked at some Canadian English-language newspapers and the New York Times to ascertain which of the above 11 impacts are evident and how ethics is used in relation to disabled people in their COVID-19 coverage.
On April 27, 2020, using Canadian Newsstream (a database consisting of 190 English-language Canadian newspapers), I searched the terms "COVID" or "Corona" or "SARS-COV-2," and obtained 63,441 articles. To find content related to disabled people, I searched the same terms and added the search the terms "disabled people" or "people with disabilities" or "disabilities" or "disability," which generated 759 hits, all of which were dated March or April. Of these 759 articles, 39 were in The Globe and Mail and 12 in the National Post: the two Canadian newspapers with national distribution.
Till recently, the coverage was mostly about, for example, how early hours were now available for shopping for disabled people. In the last three weeks two main issues emerged.
The first main topic was that disabled people and disability groups were quoted as saying that they are not listened to. While government has been responsive to the needs of vulnerable populations with financial supports, it is not clear that they are putting a disability lens on decision-making. Advocates and stakeholders have been frustrated and concerns remain. Especially in the areas of equality of access to health care and supports; access to information; and the lack of an emergency response plan for people with disabilities.
Given that some recent articles give voice to disabled people saying they are not heard, it is puzzling that only three articles mentioned that the Canadian government set up a Canadian disability advisory group on 4 April. One would have expected that the newspapers mention this development much more.
Even more troubling is that the newspapers so far did not even once mention the guidance document COVID-19 and Disability: Recommendations to the Canadian Government from Disability Related Organizations in Canada, published by Canadian disability groups on March 24.
The second major topic in Canadian coverage was about the possibility of disabled people not getting treated. This concern of disabled individuals and disability groups was flagged in an open letter to the Premier of Ontario on April 8, referring to the so-called triage protocol developed in Ontario. The term “triage protocol” was mentioned in 11 articles between 30 March and 21 April.
Within the Canadian newspapers covering COVID-19 and disabled people (search done April 27), ethics is only mentioned once in detail, and it is linked to how resources are allocated. The one article seems to make a case for the utilitarian approach to ethics, for the ones who benefit the most. The newspaper article said that the COVID-19 Ethical Decision-Making Framework from British Columbia, Canada, follows the principle of equality because it states that “Resource allocation decisions must be made with consistency in application across populations and among individuals regardless of their human condition (e.g. race, age, disability, ethnicity, ability to pay, socioeconomic status, pre-existing health condition social worth, perceived obstacles to treatment, past use of resources).” But such a conclusion is not a given because the same document states that “Resources ought be to distributed such that the maximum benefits to the greatest number will be achieved," a utilitarian approach.
Only the real situation will show how it will play itself out around disabled people. Indeed, the document Ethics and COVID-19: Resource Allocation and Priority-Setting by the World Health Organization sees the egalitarian and utilitarian as two different approaches.
In other coverage of the pandemic, moving beyond disabled people I also looked at the 260 documents that mentioned "COVID” or “Corona” or “SARS-COV-2” and "ethics" (end time 27 April). Many were false positive. 20 articles focused on the issue of how to distribute resources in the case of shortages, and only one article mentioned disability. Not one article discussed that disabled people might have a problem based on which approach is taken; an ethic theory utilitarian was the only one mentioned. Updating my search till 14 May, I found no new article on ethics covering disabled people and COVID-19.
I did the same searches for The New York Times on 27 April 2020, finding only 28 articles that mentioned disabled people in relation to COVID-19, whereas I found 1,397 hits without disabled people. Of these 28 articles most were not on the topic. One mentioned disabled people as a source of new workers for call centres, one questioned the care industry, one suggested mobile testing units for disabled people, and one highlighted the spread of COVID-19 in group homes in New York. “Ethics” as a term was not mentioned once. Updating my search till 14 May 2020, I found one hit that engages with the topic around ethics and COVID-19 and disabled people.
Where is ethics in the public discourse?
The data I obtained from my searches show that, at least for the newspapers covered, ethics was not used to build a positive ethical framework for understanding and supporting the needs of disabled people in the time of COVID-19.
The newspaper coverage does not reflect the reality that different and competing ethical theories can justify different actions. Furthermore, the newspapers only engaged ethics with the focus on medical ethics, leaving out the many other relevant ethical fields such as artificial intelligence ethics and environmental ethics that will influence how disabled people will be treated during and in the aftermath of COVID-19.
My research indicates that ethics is not used in the newspaper COVID-19 discussions as a lens to highlight a positive angle for disabled people or to outline systemic problems playing themselves out in the moment around COVID-19 and disabled people. It seems we have not learned from our mistakes in dealing with disabled people in prior disasters, whether heat waves, hurricanes like Katrina, or other disasters. This is troubling.
Susan Sherwin, a leading ethicist, has concluded that “we [ethicists] lack the appropriate intellectual tools for promoting deep moral change in our society.” I made the point elsewhere that most people don’t think in terms of morals or ethical theories or use ethics as a concept to better their situation. They think in concrete impacts, about what will affect their good life. Even when they use concepts such as rights, discrimination, or equality, they do not link them to ethics as such.
In general, the newspaper coverage of COVID-19 and disabled people seems to support this view. Terms such as “human rights” and not “ethics” were used to try to further the situation of disabled people in the COVID-19 situation.
Whether one uses “ethics” or other terms and concepts such as “ability expectation” and “ableism” and “the governance of ability expectations and ableism” (especially suitable to map out conflicts between groups and people), what is needed is an engagement with all of the ways that the pandemic and its aftermath affects disabled people and that these terms are used to enable, rather than disable, disabled people.