I was expelled from high school almost before I got there. I was too sick to attend class, and my private school saw that as grounds for expulsion. My immune system had gone crazy. My body was both attacking itself and unable to fend off attacks from outside threats. A year later, with improved health, I tried to attend my local high school. I asked for an accommodation that might protect me (and other students) from infections; could there be some hand sanitizer dispensers around the school? The answer was no. They explained that just because my immune system didn’t function didn’t mean that they were responsible for containing the spread of germs.
When I came to Stanford, Teri Adams and her Office of Accessible Education staff were much more willing to accommodate, ensuring my own room and bathroom were kept safe from wayward infections and malicious germs. Classes, however, were a different story. There was no compelling reason for my fellow students to stay away from class when they were sick — and who can blame them, the quarter system is unforgiving in many ways — nor did many of them see any need to cover their mouths when coughing near me. This did not anger me, but it did upset me. It reinforced lessons I learned as a young teenager, that the world isn’t made for someone with a compromised immune system, and I have no right to expect it to be.
You can imagine then, that current events are somewhat strange for me. For the first time since I became immunocompromised, since my immune system lost the ability to fight infections with any real power, others are worried about infecting, and being infected by, strangers. Every day, I read about the previously “impossible” changes that are being made to keep infections from spreading.
However, it isn’t just the attitude towards infections that has changed. My greatest fear has always been that I will not be able to earn an income and have health insurance due to my inability to work at a regular office job. My chronic conditions mean that working in an office, five days a week, 8 hours a day, will never be feasible. But I have compensated for my physical inefficiencies by becoming massively productive when my body is feeling as well as it can. I get my work done quickly, and when I feel well I work for countless hours to make up for the times I know I will be too ill. If I could work from home, I could have a normal occupation. Until recently this concept was met with skepticism and disdain from many employers. No longer. The impossible is once again becoming less so.
The changes demanded by COVID 19 — the awareness of infections, the pervasive concern for sanitation, the accessibility of remote work — are monumental shifts that will impact people with chronic illnesses, hopefully for years to come. Disability activists have spent years fighting for these structural improvements; now they have been achieved in the span of a few weeks. These are hopeful actions. And yet, there is also fear.
When I read op-ed pieces, listen to politicians and see demonstrators urging elderly and vulnerable populations to stay home indefinitely so that the rest of “us” can get back to “normal,” my chest grows tight. I study disability theory and Jewish history; both have taught me that I am in populations that are easily othered. Once the path to dehumanization has begun, even on a micro level, consequences follow. I worry that the twin impulses to push the immunocompromised further to the margins of society or to simply accept that our deaths are inevitable will win out in ways I cannot predict. The American ideal that individual freedom is more important than collective life is not new. We need only look to gun regulations to see that individual “liberties” often win out over the common well-being in this country. I worry that when we put an economic value on human life, when we place economic output above human life, the only logical conclusion is that my life has no value, or very little. I sense danger for the disability community and all of those who are part of it.
It is not a new idea that creation often comes after destruction. From the catastrophic loss of life and economic well-being that we are seeing, and will continue to see, there are many possibilities of what the new world will look like. Without a doubt, the world will be different after this pandemic. The loss of life is a travesty, a horror that will continue to unfold and cannot be mourned greatly enough. But what is to be? Will the threat of illness around us make us more accepting of the ill or less? Will the disruptions to how we learn and work and live make us more tolerant of differences or less? Will the vulnerabilities of certain populations bring their struggles to the forefront or will we avert our eyes to their suffering, dismissing them as collateral damage that cannot or should not be saved?
In the shadow of the Industrial Revolution, Tennyson wrote:
“Tho’ Nature, red in tooth and claw …
O life as futile, then as frail!
O for thy voice to sooth and bless!
What hope of answer, or redress?
Behind the veil, behind the veil.”
Today we are up against nature in its most raw, most savage, and most brutal state, and I wonder, I worry, what our answers will be, what choices will we make. We need to face this evil and the questions it poses head on. This horrific, ghastly destruction is also an opportunity to remake a better, more inclusive world. Everyone deserves healthcare, everyone deserves the opportunity to work in a way that their body or family or other obligations allow Everyone’s needs deserve to be treated as important and valid. We must not choose to put those who are most vulnerable away, push them even further into the darkness, abandon them as the economic sacrifices who must die or remain “behind the veil.”
Contact Jen Ehrlich at jene91 ‘at’ stanford.edu.