In Medicine people tend to use the language of war. Someone “battles” a disease. Health workers “fight” at the “frontlines”. When the pandemic started and we witnessed the massive spread in Italy, “triage” protocols were developed and discussed quickly around the world. This process was first developed on the battlefield to determine which injured soldiers should be attended first. Our modern discussions have provoked a reflection of how limited resources should be made available to COVID-19 patients, and who was “worth it” to be treated and ventilated. See, as an example, the table below from the NEJM:
This rationale is supposed to reflect a utilitarian approach — maximize the benefits for society.
But what are the benefits for society? What do we value as a society? What message are we sending with a list such as the one in the table?
The discussion reminds me of the differences of priorities of triage for injured soldiers as developed during the Napoleonic wars (the ‘Napoleonic approach’), and the selection of passengers to be saved from a sinking ship (the ‘Titanic approach’): Why do we give priority to the ones with the best chances of survival in one case (injured soldiers) and the youngest and most fragile ones in the other case (women and children first to leave a sinking ship)? What would it mean for us, as a society, if we chose to prioritize our efforts to save the elderly, frail and disabled. Some years ago, I came across the paper by Rosemarie Garland-Thomson entitled “The Case for Conserving Disability”. She eloquently presents her thoughts based on what disabled people contribute to society as a whole:
“By contribute, I do not mean economic productivity, nor contribution through individual agency or acts, but rather I consider the generative work of disability and people with disabilities through their presence in the world.”
Now that the prioritization of ventilators is no longer such an urgent issue, countries are slowly re-opening, and soon schools will also restart. Now a new discussion ensues — which students should be prioritized to attend school? Parents of disabled children are worried for several reasons: their children might not be able to wear masks due to sensory issues, or be unable to manage the masks physically, touching them inappropriately, etc. They might also be restless, prone to wandering around the classroom and not able to keep a safe distance from other students and teachers. And, based on their underlying health conditions, they might be at a higher risk of complications if they get COVID-19, especially if they have conditions that impact breathing and ventilation, or associated immunological deficits. Due to these concerns, many parents are expecting that their children will not be able to attend school, and plan to keep them safe at home. This means that the presence of disabled children will be significantly reduced in this new reality. My fear is that it will further exclude disability from the mainstream and bring us back to a ‘segregated’ society that only values its strongest and most “productive” members.
Let’s imagine if we chose the “Titanic-approach” — and prioritize disabled and chronically ill children. We have a limited number of lifeboats/classrooms, and need to determine who will be able to board/occupy them. If we give priority to this vulnerable group, we could start pairing them with individual educational assistants (to avoid cross-contamination between children and classrooms) and get them used to the new routines in school (hand-washing, masking, distancing) in a structured, supportive and developmentally appropriate way, while helping them to get back on track academically. Once this has been achieved, reverse inclusion could start, adding students to the group that do not have special education needs, while still maintaining a small and constant classroom cohort of students, teachers and educational assistants that allows distancing and continuity. With ongoing opening stages, and as the pandemic subsides, classes could be filled up to the original numbers.
On the other hand, while the pandemic persists with new cases or outbreaks, targeted lockdowns of affected cohorts would be required. Such an approach would have the effect that those students with the highest needs and most challenging to be homeschooled would have an earlier access to education. This approach would relieve their parents to get some respite and preventing their further burnout, as well as enable them to pursue their own work. As a smaller number of students would come into the school buildings, it would also allow schools to get started without hastily needing to hire additional staff at the beginning of the school year. The stepwise reverse inclusion of students without special education needs could help them learn more intimately about the needs of their disabled peers and how to support them. It would facilitate them to become allies experiencing a real-life situation of living in a society that values its more vulnerable members and believes in the strengths of diversity and cooperation. If the physical attendance of school teaches something, this should be among the top priorities.
Let us be clear: we are not in a war. We are in a storm. Weathering a storm requires everyone to change course, take it head on and sail through. Persisting on the original course usually takes longer and is more dangerous, especially if there is an iceberg or second wave on the route. Let’s change course before it is too late.
I thank my colleague Dr. Peter Rosenbaum for his helpful comments.
