wolbring

COVID-19, its aftermath and disabled people: What is the connection to ethics?

In COVID, Uncategorized on May 19, 2020 at 9:59 pm

One statement came out May 18 but I only see this now which is in essence highlighting many of the 11 points in my piece below. Joint Statement on the Disability-Inclusive Response to COVID-19 – Towards a Better Future for All A Response to the Secretary-General’s Policy Brief A Statement by 138 Member States and Observers May 18

Many talk about fake news. As my piece shows for disabled people  its about invisible news.

The World Council of Churches blog piece was reprinted on the Institute for Science, Society and Policy blog

Shorter and edited version of the original below on the World Council of Churches blog

Reprinted as  invited commentary by International Journal of Disability, Community & Rehabilitation

Comment by me: The below is the result of searching a certain set of newspapers.  The results are not generalizable. It would be interesting what others find.

My blog piece starts at the bold.

COVID-19, its aftermath and disabled people: What is the connection to ethics?

Gregor Wolbring, May 19, 2020

Disabled people can be impacted by COVID-19 and its aftermath in many ways:

  1. as potential users of COVID-19 protection measures (protection product bought by disabled people or deployed by others to be used by disabled people)
  2. as potential non-therapeutic users (consumer angle of non COVID-19 products)
  3. as potential consumers of COVID-19 knowledge
  4. as potential producers of COVID-19 knowledge
  5. as potential therapeutic users (as patient, getting treated)
  6. as potential diagnostic targets (diagnostics to prevent ‘disability’ which might increase in the aftermath of COVID-19 due to changing family circumstances)
  7. by COVID-19 protection guidelines (staying at home, no visitors in group home….)
  8. by changing societal parameters caused by COVID-19 aftermath (how do we act toward each other? See for a positive possibility in (1))
  9. by changing societal parameters caused by COVID-19 aftermath (how do certain companies act toward disabled people?)
  10. more non-disabled people competing with disabled people for existing jobs after COVID-19
  11. increasing autonomy of a product or process (e.g. AI/ML judging disabled people, see algorithm bias in health insurance…).

Ethics is about what one ought to do. Many secular and non-secular ethics theories and principles exist that ought to give guidance (2).  The question one ought to ask is which ethics theories and principles are employed for which of the 11 points of impact? There are also many different ethics discourses ranging from medical ethics to artificial intelligence ethics, robot ethics and environmental ethics. Many of these ethics discourse will impact the lives of disabled people during and in the aftermath of COVID-19. Another question one ought to ask is which topics are covered in relation to COVID-19, disabled people and ethics?

Given that 75% of Canadians still read newspapers and that newspapers are still influential in shaping opinions, I looked at newspapers to ascertain which of the above 11 impacts are evident and how ethics is used in relation to disabled people in the COVID-19 coverage.

The case of Canadian English language newspapers:

It is known that over 75% of Canadians still read newspapers (3, 4). Furthermore, numerous studies exist that highlight the problematic coverage of disabled people in the media. On April 27, 2020, using Canadian Newsstream (a database consisting of n=190 English Language Canadian newspapers) I searched the terms ft (“covid” or “corona” or “sars-cov-2”), and obtained 63,441 articles (January to April:88/998/28380/33971). To find content related to disabled people I searched the terms ft(“covid” or “corona” or “sars-cov-2”) AND (“disabled people” OR “people with disabilities” OR “disabilities” OR “disability”), which generated 759 hits all of which were dated March or April (311/448 respectively). Of these 759 articles, 39 were in The Globe and Mail and 12 in the National Post: the two Canadian newspapers with national distribution. Up to three weeks ago the coverage was mostly indicating for example that early hours are now available for shopping for disabled people. In the last three weeks two main issues emerged.

The issue of being heard as disabled people:

One topic that emerged in the last three weeks is that disabled people and disability groups were quoted to say 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”(5).

Given that some recent articles give voice to disabled people saying they are not heard, it is puzzling that only three articles (5-7) mentioned that the Canadian government set up a Canadian disability advisory group on April 4 (8). One should have expected that the newspapers mention this group much more. Given its national scope, its even more troubling that the National Post did not mention the group and it leads one to wonder why the The Globe and Mail  mentioned the group only once and in this case without their official title so it would be hard for readers to make the connection (9).

Even more troubling is that the newspapers so far did not even mention once the guidance document COVID-19 and Disability: Recommendations to the Canadian Government from Disability Related Organizations in Canada (10) published by Canadian disability groups on March 24th.

The issue of who gets treated:

The topic of the possibility of disabled people not getting treated was the second major topic appearing in the last three weeks. The evaluation by disabled individuals and disability groups that they might not be treated was flagged in an open letter to the Premier of Ontario on April 8th referring to the so called “triage protocol” developed in Ontario (11). The term “triage protocol” was mentioned in 11 articles between March 30th  (12) and April 21 (7, 13-15). Troubling again is the finding that The Globe and Mail and National Post did not cover the topic at all. The Globe and Mail seems to refer to a hierarchy of worthiness of treatment (16) but again without clarity so readers very likely do not make the linkage to existing protocols such as the triage one developed in Ontario (11). One other article in The Globe and Mail outlines the consequences  of going for the herd immunity (17).

What is the scope of ethics?

Within the Canadian newspapers covering COVID-19 and disabled people (search done April 27), ethics is only mentioned once in detail  and is linked to how resources are allocated (18). The one article (18)  seems to make a case for the utilitarian approach to ethics, for the ones who benefit the most. The newspaper article  (18) said that the COVID-19 Ethical Decision-Making Framework from British Columbia, Canada (19) follows the principle of equality because it states “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)” (19). But such conclusion is not a given because the same document states “Resources ought be to distributed such that the maximum benefits to the greatest number will be achieved” which could be seen as a utilitarian approach (19). 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 WHO (20) sees the equality and utilitarian as two different ethics approaches. One newspaper article mentioned ethics in the title (13) but the term ethics did not show up in the text anymore.

Moving beyond disabled people I also looked at the 260 documents that mentioned ft (“covid” OR “corona” OR “sars-cov-2”) AND (“ethics”) (end time April 27). Many hits were false positives. 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 ethics approach is taken; as an ethic theory utilitarian was the only one mentioned.

Beyond the already outlined search strategies whose results I analysed  I used ft (“covid” or “corona” or “sars-cov-2”) AND ft (“disabled people” OR “people with disabilities” OR “disabilities” OR “disability”) AND ft (“ethic*”) from April 27, 2020 to May 14, 2020 to see whether new articles covering ethics in conjunction with disabled people and COVID-19 appeared. No new article on ethics showed up although there were more articles covering COVID-19 and disabled people (for example (21)) (which were not analyzed).

Moving beyond Canadian newspapers: The case of The New York Times

I did the same searches for The New York Times on April 27, 2020 ft (“covid” OR “corona” OR “sars-cov-2”) AND (“disabled people” OR “people with disabilities” OR “disabilities” OR “disability”) finding only 28 articles. Without disabled people, the hit count was 1397 articles. Of these 28 articles most were not on the topic. One mentioned disabled people as a source of new workers for call centres (22). One questioned the care industry (23), and one suggested mobile testing units for disabled people (24). One article highlighted the spread of COVID-19 in group homes in The New York Times and the problem with implementing social distancing whereby also covering the systemic and long time problems such group homes face including the negative views of the people in these group homes (25). The same article thematized the hierarchy of who is seen as worthy of treatment (25). Hierarchy of treatment and coverage is also covered in (26) and questioned in a letter to the editor (27). “Ethics” as a term was not mentioned once in the 28 documents. Updating my search till May 14th, 2020 I found one hit that engaged with the topic around ethics and COVID-19 and disabled people which was a letter to the editor reacting to an Op-ed that indicated that the “University of Pittsburgh Model Hospital Policy for Allocating Scarce I.C.U” uses an utilitarian approach. The letter made the point that this policy does not  follow a utilitarian approach stating: “In fact, the Pitt allocation framework explicitly rejects the singular goal of saving the most lives because it embodies the kind of pure utilitarianism that penalizes people with disabilities and socially disadvantaged populations, who fear that they will be cast aside in the name of efficiency” (28).

Discussion:

Disabled people can be impacted by COVID-19 and its aftermath in many ways:

  1. as potential users of COVID-19 protection measures (protection product bought by disabled people or deployed by others to be used by disabled people)
  2. as potential non-therapeutic users (consumer angle of non COVID-19 products)
  3. as potential consumers of COVID-19 knowledge
  4. as potential producers of COVID-19 knowledge
  5. as potential therapeutic users (as patient, getting treated)
  6. as potential diagnostic targets (diagnostics to prevent ‘disability’ which might increase in the aftermath of COVID-19 due to changing family circumstances)
  7. by COVID-19 protection guidelines set up (staying at home, no visitors in group home….)
  8. by changing societal parameters caused by COVID-19 aftermath (how do we act toward each other? See for a positive possibility in (1))
  9. by changing societal parameters caused by COVID-19 aftermath (how do certain companies act toward disabled people?)
  10. more non-disabled people competing with disabled people for existing jobs after COVID-19
  11. increasing autonomy of a product or process (e.g. AI/ML judging disabled people, see algorithm bias in health insurance…).

As to this list, the newspapers I searched covered only point 5 of these 11 points of impact under the triage protocol coverage.

If one looks at the March 24th statement from the disability organizations (10) they cover also  point 7 of impact (measures put in place in response to COVID-19) under their priority 3 and point 3 of impact (accessibility of information) under priority 2 and 10. The document suggests a citizen task force that can monitor the situation also after COVID (priority 4) which could fit with points 4 and 6-11. Priority 5 of the document could help points 2,8 and 9. Priority 8,9 could help points 9 and 11. Roxanne Mykitiuk and Trudo Lemmens bring in the duty to accommodate obligation into the triage discussions (29) and Ari Ne’eman outlines disability laws used in the USA to prevent appearing discrimination against disabled people in the rationing actions (30) broadening the impact under point 5 beyond how the newspapers covered point 5 of impact. The ethical obligation to have access to trusted people is also mentioned (31) fitting point 7 of impact. The Council of Canadians with Disabilities wrote in a March 20th, 2020 media release “The Council of Canadians with Disabilities (CCD) reminds all levels of government, community organizations and businesses responding to the COVID-19 crisis that all planning needs to be done using a human and disability rights lens to ensure that our country’s response does not leave anyone behind”(32) and mentions among others the principle of universal design. The media release could cover actions among all 11 points of impact.

A recent CNN article (33) outlines how utilitarianism and libertarianism are used to push for opening the economy and to stop the lockdown. The article did not mention disabled people, but the sentiment presented can impact all of the 11 points of impact as well as the points made by the disability groups including the Council of Canadians with Disabilities.

Ethics is about what one ought to do. The newspaper articles I searched did not use ethics to build a positive notion for disabled people in the time of COVID-19.  Instead in one of the Canadian newspaper articles covering the triage protocol one reads.

“Thankfully, we have the Human Rights Act that protects us broadly. Will it be taken narrowly in these times to ensure that, for example, the vent-dependent, spastic quadriplegic child who presents with a few symptoms of COVID-19 will receive the same level of care as a 12-year-old non-disabled presenting with those same symptoms? Our premier has ensured that persons with disability have nothing to fear. Human rights, set down internationally, and put into our domestic law through the Human Rights Act, belong to every single person in Canada, whether they have disabilities or not, whether they fall into COVID-19 vulnerability or not. Such legal standards and protections will make it easier for medical care providers to do what they know they need  to do”(13).

Human rights are put forward as a means to protect against COVID-19 problems in other newspaper articles (16, 34, 35).  The newspaper coverage does not reflect the reality that different ethics theories can justify different actions (2). Furthermore, the newspapers only engaged ethics with the focus on medical ethics. However, as to the 11 impacts, there are many ethics discourses from artificial intelligence ethics to environmental ethics that will influence how disabled people will be and are treated during and in the aftermath of COVID-19.

Conclusion:

The findings indicate that ethics is not used in the newspaper COVID-19 discussions as a lens to highlight a positive angle for disabled people and to further the discussions of outlining systemic problems many of which play themselves out in the moment around COVID-19 and disabled people, but were also evident in many other disasters whether heatwaves, flooding’s like after Katrina, or other disasters (36-38). This is troubling.

Sherwin, a leading ethicist, concluded that “we [ethicists] lack the appropriate intellectual tools for promoting deep moral change in our society” (39). As outlined elsewhere (2, 40) most people don’t think in ways of morals or ethics theories or use ethics as a word to better their situation. They think in concrete impacts, in what impacts their good life and they use concepts such as rights, discrimination, equality they would not link to ethics. 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 better the situation of disabled people in the COVID-19 situation.  And there are numerous examples from outside the newspapers  (41-43) reflecting the same reality.  As my research results can not be generalized to all newspapers or other media sources it would be interesting to see what others will find using other sources.

However, independent of whether one uses ethics or other terms and concepts such  as ability expectation and ableism (44, 45) and the governance of ability expectations and ableism  (40) (especially suitable to map out conflicts between groups and people) what is needed is an engagement with all of the 11 impact points and the employment of terms such as ethics or others in ways that enable not disable disabled people.

References

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  3. News Media Canada. FAQ online: News Media Canada; 2015 [Available from: https://nmc-mic.ca/about-newspapers/faq/.
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  9. The Globe and Mail. OTTAWA NAMES GROUP TO ENSURE DISABLED CANADIANS ARE INCLUDED IN COVID-19 RESPONSE. The Globe and Mail. 2020 Apr 11.
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  41. Shew A. Let COVID-19 expand awareness of disability tech. Nature. 2020;581:9.
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