The structural silencing of disabled children and their parents: A reflection on who is absent in discussions about the toll of coronavirus

This article is part of the following series: Dispatches from the pandemic

Content warning: suicidal ideation

Last Wednesday was the day I learned to always carry a paperclip in my pocket. 

We were laying in the soft green grass watching puffy clouds in the sky when my eight-year-old son threatened to jump from my bedroom window. He described how breaking glass would slice his neck and then kill him when he landed, thirty feet below. Then he ran inside, upstairs, and locked my bedroom door.

He lay curled on my bed on the other side of the lock, but I didn’t know this for the minute it took to find the paperclip. I called out his name, told him I loved him, but for the minute until I popped the lock I couldn’t know if he was listening.

This was the third time in as many days that he had described his violent death to me, but even this wasn’t enough. It wasn’t until the next day, when he started kicking and throwing objects at windows at close range and then lay in a crumpled pile in our closet sobbing with a coat sleeve wrapped around his neck, that we got in touch with a doctor who heard the fear in my voice. By the end of the day, we had a telehealth visit with a specialist and a prescription for an antipsychotic medication that we picked up and administered before dinner. 

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My son is a sweet and funny autistic kid who suffers from severe sensory processing dysregulation, anxiety, and perseveration. Casual acquaintances do not know this about him because we have organized our life to manage his afflictions. He plays on highly-structured sports teams that give him the several hours of physical exertion that his body craves each day. He has regular play-therapy sessions with a trusted counselor. He loves being with other people and responds well to peer influence so weekend playdates with neighbors offer us a lifeline. The summer’s open-ended days are hard, but we begin preparing him months in advance and make sure his days include exercise and structure.

Now my son is in sudden and intense social isolation. The virtual connections that may work for many do not work for him. He cannot handle the cognitive screen-overload of zoom, the sensory stimulation of notifications, or the request to download and upload worksheets required of the virtual classroom. Remote video games with friends hold no interest. Teletherapy is a challenge since he is more responsive to therapeutic play and touch than to conversation. The mere thought of participating in zoom calls induces panic-filled meltdowns that disrupt his well being for hours. While I respect calls among well-intentioned anthropologists to refer to the injunction of the moment as physical and not social distancing, social distance has become our reality and its impact on him (and me) is taking a brutal toll.

I’ve seen a number of blogs about seizing the moment of tranquility that coronavirus has foisted upon us: bake bread, plant gardens, reconnect with the pioneering do-it-yourself ethos of frontier survival. When I see so little public awareness about how dark my life has become as we’ve had to sever our social supports I know this is, in part, because I am too overwhelmed to speak out.

The experiences of my son, and many of the 1 in 6 children in the United States with developmental disabilities, are doubly erased. First, they are erased because parents are struggling. I am an academic which means that right now I am barely surviving myself. The list of basic academic duties expected of me is exhausting to even write. I’m going to stick it in a footnote, meant for those who don’t understand faculty life.^[1] Then, on top of all of these things sits the obligation to transform my spring-term undergraduate and graduate classes into experiments in virtual learning.

“Keep teaching” became the university slogan the week that all elementary schools in my state closed. Faculty at my university were given no extra time to prepare for the switch. No one asked me if this was something I could do. My children’s schools did not check in to see if screen school would work for my family. In both cases, remote instruction just began, administrators assuming that teachers and students would adapt. Pre-tenured at a moment when entire universities are closing, with my family’s health insurance depending upon my employment, I was afraid to protest or advocate for my son. 

This erasure is compounded by the fact I’m unable to speak openly about the challenges I am facing because my son is too young to fully understand informed consent. It haunts me about this moment that millions of children may now be living in agony when they and their families — aware of the stigma — cannot responsibly share their experiences. 

This is the bind of structural silencing: living without supports is dangerous, but so too is voicing the struggle. Epidemiologists are tabulating death rates, economists are evaluating costs in dollars. Neither calculation offers visibility into the intense burden of surviving the everyday dis-ease of social isolation— nor how this affects some far more than others. Speaking out is one of the best tools for inspiring recognition and with this an appropriate response, and yet sharing may not be wise given the tremendous lack of public understanding. Even though I am his mother, it would be irresponsible to disclose how severely my son is struggling, and so I cannot share how much I am struggling too.  

To be clear, in writing about our difficulties I am not advocating an end to social distancing before it’s safe. If my son is in a bad place today, he would be much worse off if someone in his circles became sick with or died from the novel coronavirus (and I am trying to teach him to care beyond his circles, too). It would be a false equivalence to weigh his comfort against the safety of high-risk communities of elderly people, underpaid essential workers, systematically marginalized people of color, and other disabled people who are suffering through the impossibility of isolation.

In this regard I join the chorus of fury at how government officials have squandered the time we’ve bought them by upending our lives to flatten the curve. The mortality rate for coronavirus in my community is presently 18% because only the very sick are tested. Where I live there is no personal protective gear, no contact tracing, no isolation of the sick. The lack of universal health insurance or basic income guarantees will only make the apocalypse that we’re staring down even worse. None of what needs to happen to bring an end to this is actually happening.

Plenty of others have vocalized these injustices; what I want to advocate for in this essay I’ve seen less widely shared:

First, I’d like administrators to stop the charade of normalcy when nothing about this moment is normal. Several academics have called for a change in expectations. Fewer have been able to say: I am trying my best to “keep teaching,” but I’m doing so while my previously stable son, in the background, threatens in descriptive detail to end his life. Because people don’t know this is happening to me, I suspect it may be happening to others– maybe many of us. So here is one concrete plea: if someone out there is reviewing a job or grant application or an annual review or tenure dossier that seems a little thin, please go ahead and assume this is their publication.

Second, I would like for us to begin a conversation about the intense therapeutic needs that we are living through and that won’t suddenly go away as the world begins to open up. Officials are proposing significant cuts to special education services. Not only must these proposals be rejected, but disability and mutual aid services everywhere must be expanded in recognition of the toll the virus has taken on disabled people’s lives. We should frame these therapies as repairs to social rather than simply mental health to reflect how the problem lies outside ourselves. Right now there is incredible damage being done to the fabric of sociality and it will take considerable time, energy, and financial resources to make this well.

Finally, in keeping with the disability studies maxim “nothing about us without us,” I would like to see disabled people centered in discussions about how to best use remote communication technologies as we move forward. We owe a collective debt to disability activists for many of the valuable online learning tools and video conferencing resources that were at our fingertips when the crisis began (see Hill 2020). Yet I am troubled by the claim now being made among administrators that coronavirus has ushered in systemic changes to pedagogy and work and that virtual communication will become the ‘new normal.’ Disabilities are multifaceted: what works for some may not work for others and much about the current world of zoom-based education does not have many of us in mind (see Roscigno 2020). We must make sure a wide range of disabled people are in positions of power in the design and implementation of remote communication technologies. 

Without the supports of school, sports, and friends, my son is now on a cocktail of medications. His appetite is strange to him, he frequently feels drowsy or nauseous, and the mere mention of zoom still throws him off for hours. But he is, for now, safer than he was before. Our days are far from calm, but I think he’ll be okay. 

I’m less sure about the rest of us. My son, who has always been extremely sensitive to his surroundings, reminds me that it’s no small thing to entirely remake our social worlds. I fear his collapse is telling– a harbinger of what is to come for the many who cannot or will not adapt to the widespread breakdown of sociality. As the burden intensifies, I hope we can find ways to meaningfully reimagine the mutual aid and care systems that have helped many of us survive. But something to keep in mind as we do: because of structural silencing, this work cannot depend upon individuals speaking out. It must be capable of responding even in the absence of vocalized suffering. 

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^[1]Each of these, in my typical life, would feel important: graduate student theses to edit; manuscripts I had committed to reviewing whose authors are waiting on me; a book review of a beautiful book that deserves to be celebrated to write; graduate students in the midst of fieldwork who need my support rethinking their projects, not to mention that their new IRB applications fall under my name; a book and new funding proposals I must write for tenure and promotion; so many university and academic service commitments to fulfill; and letters of recommendation that must be thoughtfully written for students desperate for scarce grants and jobs. Every one of these things must be done and every day there is no time.