The Harms of Masking - Part 2

During covid, the pro-mask crowd purported to be the most caring. But they turned a blind eye to those with disabilities. Children with Down syndrome were punished with this cruel, inhumane policy.

My uncle Bobby — born in 1952 — had Down syndrome. Families with children with disabilities were left alone to care for them, and it was often a significant burden and sometimes, even a mark of shame for the families.

Bobby passed away a few years ago and had mostly lived an isolated life, having grown up before the Individuals with Disabilities and Education Act (IDEA) passed in 1975 (also known as the Education for All Handicapped Children Act — EHA). My grandparents adored him and took full responsibility for his care, though it was difficult as his cognitive abilities were extremely limited. He spoke only a few words, that were only understood by family members.

Bobby lived at home most of his life. While he was able to attend a special education program through Easterseals, it provided little in the way of education. When my grandfather died in his 80s, Bobby was moved into a care home as my grandmother was unable to care for him by herself at this point. Bobby spent most of his life interacting only with his family members, and other people with Down syndrome, not fully integrated into the world. Though he did enjoy hanging out with my grandfather at the family dry cleaning store.

Me and my uncle Bobby (left photo); Me, my grandparents, my brother and my uncle (right photo)

Thankfully, things changed for the better in 1975 with the passage of IDEA. For this, Jennifer Dale is grateful. This mother of three lives in Lake Oswego, Oregon with her family. Her youngest child — Lizzie — has Down syndrome. Up until 2020, the family enjoyed the benefits of services designed to protect the rights of people with disabilities. Early intervention has made educational progress for those with Down syndrome possible in a way that it wasn’t for my uncle.

Up until March 2020, Lizzie had been having a great year in second grade. Because of the Individuals with Disabilities and Education Act, Lizzie had been mainstreamed into the regular classroom and had a teacher who included her in the typical reading and math lessons with other students her age. This enabled Lizzie to learn from her peers as well as her teacher. She was also provided with an aide, who provided further assistance with lessons in the classroom. According to both state and federal law, children with disabilities must receive their education in the least restrictive environment. And that is what Lizzie had experienced in the first part of second grade.

Lizzie with her sister and her aide

Jennifer, Lizzie’s mother, told me:

“What Lizzie really needs is to look at her peers and how are they zipping up their jacket, or how are they coming in in the morning and making a food selection for lunch. That peer interaction and that peer role modeling is some of the best learning, that my daughter can experience. And so we advocated that she remain in the classroom in a typical general education classroom setting for more than 80% of the day [pre-Covid]. It's really valuable to a person with different needs or different abilities to look at what somebody else is doing and see if they can do the same thing or learn from that other person. So in a public education setting, it's not just the teacher that's impacting and influencing my daughter, but it's her friends.”

Along with most other schools across the country, Lake Oswego schools closed in March 2020. Jennifer told me:

“The school closures were devastating for Lizzie. I don't think I realized it at first. I thought it was safer since, as a child with Down syndrome, she is probably more susceptible to a respiratory virus. But as time went on, I don’t think people realized how isolated she was. She doesn’t have a means of reaching out to say ‘hey I miss you.’ It was impossible for a young person with cognitive delays to understand why was the world suddenly closed? Why suddenly can I not see my friends? Why am I only seeing them on a screen and how do I interact?”

For Lizzie, it wasn’t just the academics that mattered. It was the structure of the school day: getting up, getting dressed, brushing her teeth, getting on the school bus. This routine helped her learn to move through the world. She took cues from her peers in school and was learning to master the intricacies of life.

Lizzie’s parents’ hope is that she is able to live and work in the world — make friends, contribute in the work place, be happy and have a fulfilling life, a far cry from what my uncle experienced. But the isolation of covid lockdowns and school closures were a major setback. Lizzie grew withdrawn and sad without peer interaction but she didn’t have the means to express herself. She often hid under her desk during virtual school.

And so the Dales were thrilled to have the opportunity to send Lizzie back to school — albeit part time, or “hybrid” as it was called — in November 2020. A special accommodation was made for a handful of children with disabilities to return to the classroom. Lizzie was the only student at her elementary school to return at this time and one of only two kids in the entire district.  This meant Lizzie was alone in the classroom with only her aide.

It was better than being home on the computer all the time, but not in any way sufficient. She was still lonely and didn’t understand where her peers were. With only the aide, Lizzie was permitted to wear just a face shield rather than a mask, enabling some one-on-one communication.

It must be noted, it is very difficult for Lizzie to wear a mask. Down syndrome causes low muscle tone, softer cartilage and a flatter nose. When Lizzie tries to wear a mask, it just slides right off of her face. Furthermore, the softer ear cartilage means the strings that hold a mask over the face slip off easily, as the ears just bend forward.

In addition to the physical differences that make mask wearing nearly impossible for Lizzie, she has low muscle tone in her cheeks and has a hard time enunciating.

“Enunciation was always a struggle but from behind a mask it was impossible,” Jennifer told me. She added: “Trying to communicate while also adjusting her mask nearly every couple of seconds throughout the day caused Lizzie to withdraw from participating in the classroom, and socially with friends. People couldn’t understand her words and so she stopped talking.”

While mask mandates had gone into effect in the summer of 2020 in Oregon, in most instances, when the Dales were in public spaces all they had to do was raise Lizzie’s visible disability and she was permitted to go without a face covering.

But in the fall of 2021, masks were required for the full return to school. The Dales applied for a mask exemption for Lizzie multiple times and were always denied. They appealed to their pediatrician to write a note exempting Lizzie. To no avail.

Ultimately, the Dales were told Lizzie would need to be separated and isolated from her peers if she was going to go without a mask. Given the way Lizzie learns from her classmates, and her strong desire to be with her friends, this was simply not an option. Jennifer told me:

“After a year of no peer interaction this [being separated from her friends] was not plausible. So we forced her to wear it. She would come home everyday, having soaked through 3+ masks. Another feature of Down syndrome is tongue protrusion. Lizzie’s tongue is larger than other kids and the muscle is weaker, as well as having weaker lip muscles. So her tongue was constantly pressed up against the mask. Her mask was soaking wet at the end of every day.

There was no instance where a mask protected Lizzie or when she could wear it effectively. Her ears were too weak to hold up the straps and her nose too flat to keep the mask from sliding off. When she did try to speak, no one could understand her because she could not properly form the words. Her low muscle tone challenges her articulation without a mask. But with a mask was impossible. So she held back and stopped trying to speak or share her needs. As a result, she acted out.”

It is often crowed that mask wearing is a small sacrifice. But it wasn’t small for Lizzie. She was unable to communicate or connect with her peers and teachers. Which led to frustration and behavioral problems. The Dales were made to set up a behavioral assessment to “figure out what was wrong with Lizzie,” according to her mother.

Besides her disability, there was nothing wrong with Lizzie other than the fact that she was forced to cover her face in an entirely ineffective manner, making communication close to impossible.

It’s all so misguided and cruel to force a child who already struggles to learn and talk to wear a mask. Given that her mask was either slipping down under her nose, falling off of her ears or soaking wet (or all three) the forced masking was clearly ineffective. And yet, it was forced on this child. One can’t help but wonder if the cruelty was the point.

No sane person could observe a 9-year-old with Down syndrome and watch her frustration with this barrier to communication and think: This is worth it. We must continue. And yet, that is exactly what happened.

Lizzie’s speech therapist also wore a mask, albeit a clear one. The therapist assured the Dales that the clear frame on the mask allowed Lizzie to see her lips but the plastic fogged up and Lizzie struggled to see her therapists’ lips, leading to greater frustration. The Dales chose to discontinue speech therapy in 2021 because it was proving a waste of time.

Masks did not come off of the students and teachers until a full year later. Two years after closures, Lizzie was finally able to return to a normal school experience. Her behavior issues subsided immediately and her speech development progress accelerated.

And by Fall of 2022 every one of Lizzie’s aides, therapists and teachers admitted without hesitation that masks had harmed kids’ development. None more so than children like Lizzie.

“We sat in Lizzie’s IEP meeting and I was stunned to hear them all say this when just a year earlier we were viewed as horrible, selfish parents for seeking a mask exemption,” Jennifer told me.

Those who screamed the loudest about “anti-maskers” being ableist, failed to consider the needs of a child with Down syndrome. Or the deaf and hearing impaired. Or those suffering from PTSD. And now, those who insisted on masking — going so far as to demonize parents of children with disabilities as selfish teacher-murderers — seem to wave it off as if it was obvious all along that face coverings and other restrictions would be harmful. And we get lots of: Oh well, it was necessary in the fog of war. No harm no foul.

It was a sign of progress that kids like Lizzie could fully integrate into the world, make friends, learn to read, move towards an adult life of semi-independence since the passage of IDEA in 1975. That all reversed in 2020 when these children were shuttered at home and then restricted in ways that cut them off from their peers and the world when they were permitted to go back to school.

During covid, the pro-lockdown, pro-mask, pro-restriction crowd purported to be the most caring. But they turned a blind eye to those with disabilities. And their cruelty will not be forgotten by those who suffered at the hands of it.