I watch through the window as the seasons change, spring to summer. The heat permeates, the neighbor kids run and play. Sprinklers soaking their bodies as they dance in glee.
My ten-year-old child, J, sits stimming, gleefully twisting at the waist from side to side, as their hair blows in the breeze, trying to sign. Trying to communicate to neighborhood kids, and a community who abandons and ignores. I smile and mirror “Nice work” in American Sign Language, and model with the augmentative and alternative communication, “I saw you said, ‘I like.’”
We return to the 14-hour tube feed in our home. We return to seizure monitoring and to learning adaptive sign language. To a life forever forgotten, abandoned, homebound, and unknown.
Summer turns into fall, the school buses return. Kids with new backpacks share their summer woes as they walk the streets, new shoes scraping sidewalks. The push and pull of another school year.
When the pandemic began, we had already been isolated for nearly five years due to my child’s low seizure threshold, compromised immune system, and airway restriction. Nurses at the pediatric intensive care unit referred to us as “frequent flyers” and knew us by name. Our child’s neurologist informed us to stay within a one-hour radius of the local children’s hospital. We had frequent 911 calls and traumatic ambulance rides.
Neighbors peered out curtained windows: no consoling messages, no food trains.
Even neighbors who were nurses didn’t show up for support. This was not the community that we had hoped for.
When the pandemic began, we had already been isolated for nearly five years due to my child’s low seizure threshold, compromised immune system, and airway restriction.
As the pandemic went on, both my child and I developed Long COVID, after catching COVID-19 from a school assistant in 2022. The days rolled into nights as I lay in bed, struggling with chronic pain, insomnia, worsening anxiety, and depression. It was a pendulum swinging from one extreme to the next; some days my flares would subside, but my mental health would plummet. My child became increasingly intolerant of their feeds and agitated by my inability to be the same parent I was before I got Long COVID.
We hadn’t prepared for the deep pain associated with societal abandonment, especially not from those who claimed to support disabled people. I have attended masked events deemed “inclusive” that weren’t safe for my child. COVID-aware groups abandon disabled kids, specifically those who can’t mask because of airway restrictions. We need collective care that supports those who have complex disabilities by increasing education on medical caregiving in order to combat structural ableism and create an inclusive environment. Communities need to create safe spaces for inclusion for all disabled kids, including and going beyond COVID-19 safety measures.
When COVID-19 hit, we spoke to our child’s medical team about our concerns. For two years, my child’s neurologist and primary doctor assured us that we didn’t need to worry as COVID-19 affected only adults, and that our child would be fine. My child has a rare disability related to genetic changes called 4p- (or Wolf-Hirschhorn), shared by roughly 1 in 50,000 people. People with this disability have microcephaly, seizures, intellectual and physical disabilities, hypotonia, and organ function concerns.
We had been fighting against abusive care in the medical system since prior to their birth. Our local medical institution had already shown us that they did not care for the survival of our child. In the fall of 2022, my child caught COVID-19 from a visiting instructional assistant. At the time, we were doing remote school and had decided to organize a rare N95-masked visit.
Roughly a week later, we rushed J to the children’s hospital due to a bad cough and breathing concerns. The doctor assured us that “COVID-19 is mild in kids” and discharged us after a few hours. I pleaded to have my child admitted, but they callously told me to bring them back if anything worsens. A day after we arrived home, we had three weeks of crisis-level care, fighting to keep our child alive. I asked for support from our state disability case manager. She hinted that we “could place our child in medical foster care.”
None of my child’s medical providers seemed to know about the extensive dangers of COVID-19 for people who have an intellectual or developmental disability (IDD). Later, I discovered a 2021 study that used medical records from 64 million intellectually disabled individuals that showed people who have IDD were six times more likely to die from COVID-19 than the general population. Additionally, a 2023 study found that people who have IDD have higher rates of Long COVID.
I knew my child had Long COVID. They were more agitated, less tolerant of their tube feeds, and experiencing more pain. Since my child is “non-speaking,” providers wanted “scientific evidence” to prove the prognosis. They viewed my child as having “severe” health complications and didn’t appear interested in supporting or researching another diagnosis.
My child and I both tested positive for the Epstein–Barr virus, which supported my own Long COVID diagnosis. Surprisingly, I was able to get a diagnosis fairly quickly.
But four years later, my child still has not received a Long COVID diagnosis. Most providers assumed all their symptoms were due to their rare disability, even if symptoms were new.
Before the pandemic, my child had survived multiple attempts of eugenics, from a geneticist suggesting an abortion at 8 and a half months in utero to the prescription of contraindicated medications that required resuscitation. The abuse by medical institutions was a traumatic reality. When Long COVID arrived, we knew we would have to fight to gain basic support.
Medical facilities have handled Long COVID the same way they have the ongoing pandemic: ignore it and hope it goes away. Instead of setting standards for illness mitigation and researching ways to protect vulnerable children, pediatric medical facilities dropped mask mandates and mitigations.
Medical facilities have handled Long COVID the same way they have the ongoing pandemic: ignore it and hope it goes away.
I spent a year emailing legislators, the Oregon Health Authority, and administrators at Oregon Health and Science University — begging them for permanent N95 mask mandates as essential for the survival of disabled kids like mine who have medically complex disabilities.
No one cared. They stopped responding. They said, “Vaccines will suffice.” They said, “That’s asking too much. If we do these accommodations for your child, we would have to for everyone.” They said, “You can still mask.”
I reminded them that my child could not mask due to aspiration risks and a serious upper airway restriction. I reminded them that there were other disabled children and adults who also couldn’t mask and who required all visitors and staff to mask to ensure their survival.
After a year and a half of solo advocacy, I received a compromise: all staff would wear N95 masks around my child, and we would get back-door access and be placed immediately in a room to avoid the crowded, unmasked waiting room. Yet no provisions were made to ensure other disabled kids and adults would have the same equitable and safe access.
In 2023, I was involved in a national research project through Utah State University that interviewed caregivers of disabled kids, specifically those with medically complex disabilities, regarding experiences of ableism in pediatric healthcare settings. I provided extensive support in developing themes that I had observed from my child’s experience in medical settings. Traumatic stories emerged about medical providers secretly placing DNR orders in children’s charts and doctors who asked parents why they loved their child or cared if they survived. The stories were a grim reminder of how the medical institution devalues disabled kids.
As a disabled parent, I sought community in disability justice and COVID-aware groups. Yet I have felt like an outsider. When I have spoken out against the ableism toward intellectually disabled folks in masked spaces on TikTok, I have received responses on posts from fellow maskers calling anti-maskers derogatory terms that mock the IDD community.
Local COVID-aware parents planned masked-required playdates in rock climbing gyms and outdoor sporting events that weren’t accessible to a physically disabled kid. I didn’t know how to relate to their potty training woes, favorite video games, favorite foods, and last-minute playdates. As a parent struggling with chronic pain while being a 24/7 caregiver, I was lucky to brush my teeth and get out of bed. They never understood the need for adult changing stations, seizure and aspiration monitoring, and tube feeds. If we are to move together as a community, we must commit to unlearning ableist tropes and intellectual supremacy and create antiableist spaces that celebrate all body-minds.
COVID-aware communities must provide safe spaces for generationally disabled families to celebrate access justice and radical inclusion. Intellectually disabled children, especially those who communicate via body language and vocalizations, need play, engagement, socialization, and care that is accessible and individualized.
In addition, in order to ensure the survival of our next generation of disabled leaders, we must continue to pressure medical institutions to require N95 masks and HEPA filtration — especially in children’s hospitals and neonatal and pediatric intensive care units. Even if parents of disabled kids do not mask or practice illness mitigations, children do not consent to ongoing SARS-CoV-2 infections.
A core principle of disability justice is cross-disability organizing. Fighting for collective liberation is essential.
That fight goes beyond COVID-19 precautions. We can only move together in collective disability liberation when we gain the understanding of how to keep our crip kin alive. By committing to crip care, we can help teach our communities new skills that help people learn about tube feeding, tracheostomy care, sign language, and beyond. This education will ensure true inclusion for our diverse disabled community.
Collective liberation is collective care. We learn and unlearn in order to provide revolutionary love. No one left behind. No one abandoned. Everyone celebrated.
Collective liberation is collective care. We learn and unlearn in order to provide revolutionary love. No one left behind. No one abandoned. Everyone celebrated.
eZme Fern, aka MadMaskedMxma (they/them), is a MAD, disabled, enby, queer parent who loves big trees, soft moss, and babbling brooks. They enjoy learning from their child, practicing ASL, and tearing down eugenics culture.
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