Everything was coming together: We finally had the child we so desperately desired, Kalika, after seven heartbreaking miscarriages. And now, both my husband and I had landed tenure-track jobs at the same institution, of which in academia there are typically astronomical odds.
Our busy, joyful lives were shockingly interrupted when my baby girl was diagnosed with a catastrophic neurological disorder, Rett syndrome. RS is rare, affecting about one in every 15,000 live births, primarily girls. It leads to a near total loss of speech; limited functional hand use; mobility issues; breathing problems; sleep disruptions; seizures; and gastrointestinal issues.
Thankfully, one of the things that held me together after her diagnosis was immersing myself in my new line of research, on education in RS. Until recently, girls with RS had been classified as “ineducable” but revolutionary eye-tracking communication devices, such as the one my daughter uses to talk, are challenging prior perceptions. Another source of comfort was the classroom, where my students' sharp, social-justice oriented engagement in issues of language and literacy gave me moments of intellectual escape. It was all momentarily bearable.
But I had never anticipated a pandemic would tear through the country, leaving more than 200,000 dead in its wake. I also never anticipated that a virus would transform my refuge from one disease into the hotbed of another.
Why? UGA has been firm that face-to-face instruction must proceed, even as it was named as the university with most confirmed infections just a few weeks ago. Stepping into the classroom for me is now filled with terror: Respiratory issues, a common complication of COVID-19, are the single most critical cause of death in RS. Entering a classroom with students posed only “minimal risks” per the institution, but even if I am comfortable with that level of risk for my own life, what right do I have to take it on for my daughter?
Credit: Usree Bhattacharya
Credit: Usree Bhattacharya
Exceptions to faculty members' physical presence in the classroom have been granted to only those with Americans with Disabilities Act accommodations. This exception is also being applied for the Spring semester. Importantly, embedded within that mandate for instructional delivery is this line: “ADA accommodation is for the employee and does not extend to members of the employee’s household who fall into categories of increased risk of severe illness from COVID-19.”
While the university has made significant efforts to provide a safe environment for faculty, staff, and students, and numbers have fallen over the past two weeks, I have also seen it highlighted that our county is the “20th worst” among all U.S. counties. The disease is still circulating aggressively within our community and campus — that can simply not be denied.
Many of our peer and aspirational universities have transitioned to online instruction: e.g., Harvard, MIT, and my own alma mater, University of California, Berkeley. Importantly, online instruction is neither new to UGA nor does it necessarily signal an inferior education.
There are educational practices that work better online, especially when you factor in the effects of socially distanced and mask-to-mask instruction in classrooms. Online education has been part of American academia since the ’80s; we now have decades of research to support its value, and also, thankfully, resources to make it rich and engaging in multiple ways.
It is absolutely possible to have students “learning effectively” and “engaging deeply” in online environments. We have no research yet to support the claim that the benefits of traditional face-to-face instruction are carried over in the constrained pandemic context.
To add to these issues, my daughter has been out of daycare since early March. She started school a few weeks ago, but our county, the home of UGA, feels it is too dangerous to open for in-person schooling; her instruction, therefore, occurs at home as well. Like many dual academic couples, my husband and I not only juggle our jobs, we also serve as homeschool educators, and, additionally, facilitate Kalika’s physical, occupational, feeding, and music therapies that occur virtually. A dozen hours with our wonderful babysitter helps us get through the week.
There is currently no accommodation for parents of Clarke County students who are faculty or staff within the UGA system. We are all struggling. I love my students; I have spent my life believing that teaching is what I was born to do. I am firmly committed to offering the best instruction to my students. I am hoping, however, for room for flexibility in the face-to-face instructional mandates for the Fall as well as for the Spring.
A 4-year-old little girl’s life is at stake. She already battles profound disabilities in her everyday life; to add to her challenges in life would be unconscionable. An official switch to robust, online-only instruction for the few graduate students in my seminars at UGA, when compared to the risk of exposing my vulnerable little girl to a terrifying and deadly disease, seems like a minor and simple fix.
I understand that legal decisions steer decision-making within higher educational institutions in evaluating these kinds of accommodations. However, educational policies must also be guided by the heart. In the context of the worst public health crisis to affect the United States ever, we should be coming together as a community and thinking of each other.
It’s one thing to ask that I risk my health for my profession; it’s another to ask me to risk my child’s life. We must make decisions ethically, thoughtfully, and most importantly, lead with compassion, as the flagship university of Georgia’s higher educational system.