WHERE DO WE GO FROM HERE? LIFE AFTER 2020
Calla Winchell is trained as a writer, researcher and a reader having earned a bachelor’s degree in English from Johns Hopkins University and her Master of Humanities from the University of Chicago. She is also a friend of the Gates Center and one of the patients on whom our research is intensely focused. She suffers from Ehlers-Danlos Syndrome (EDS), a rare group of genetic disorders, which affect the elasticity of connective tissues. Last year’s annual report profiled Calla and announced the launch of the Ehlers-Danlos Syndrome Center of Excellence, dedicated to developing a cure for EDS at the Gates Center and to better addressing the clinical needs of EDS patients through specialty care at Children’s Hospital Colorado.
A PATIENT’S PATIENCE: THE YEAR OF PARADOX A frequent comment that the sick and disabled have long hated is: “it must be nice to be able to stay home all day.” Hopefully, the echo of the last year will be enough to put to rest such a sentiment. The able bodied have had a chance to live as the housebound do, and have found it to be among the most stressful experiences of their lives. This is no surprise to the chronically ill community. It is no vacation to stay in the same four walls for months at a time (even less so if you feel consistently ill). If I had one wish for what we learn from this year, it would be a greater empathy for those less able. Indeed, the disabled community needs that empathy. Six out of ten deaths1 from COVID-19 in the United Kingdom were disabled people of all ages, with a particular loss of our older community members. I suspect when all is said and done that 1
will be similar in the United States. A whole generation of wisdom, humanity, love and happiness snuffed out because of bureaucratic incompetence and ableist policy decisions. It is a time for grim reflection, on why triage and medical rationing always coincidentally kills those less valued by society. However, the chronically ill and the disabled have superpowers taught to them only by painful experience: how to find a life worth living no matter the restrictions. We have coping skills for days, because the social isolation that many had to deal with for the first time this year is a daily fact for many medically marginalized people. We can make joy in the smallest accomplishments, appreciate aspects of life that go completely unnoticed by others. To be clear, we are forced to be resilient by a non-inclusive world. I wish we had a world
“Covid: Disabled people account for six in 10 deaths in England last year” from the BBC https://www.bbc.com/news/uk-56033813 Gates Center for Regenerative Medicine
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