Covid Isn’t Over: Disabled Lives Are Still at Stake (by Jeneva Stone)
Rob earlier this summer, before he contracted Covid. Rob is at an outdoor art class. He is seated in his wheelchair with a tie-dye surgical mask over his tracheostomy tube. His dad stands next to him, holding up a white t-shirt with a design Rob drew on it for the class project.
I’ve had some reasons for optimism about the pandemic, including the development of vaccines and treatments, but my community is still in danger, and it seems that nondisabled folks care less and less.
I can remember the early days of the pandemic, thinking that nondisabled people might finally understand the access barriers to, well, just living, and to medical care that people with disabilities have been living with forever. That the experience of having had life dramatically upended might lead to greater awareness of the struggles people with disabilities face daily. But, in the end, nondisabled people just wanted to “get their lives back” and it didn’t matter what disabled people needed.
My disabled son Rob, artist and disability rights advocate, was taken to the ER recently with a case of Covid. Rob is vaccinated and boosted, and has avoided Covid for two and a half years, but it finally got him.
Rob was treated with an effective antiviral medication and responded well; however, the way he was treated during his hospitalization was appalling.
Rob has a complex form of dystonia with little voluntary movement, and he is nonspeaking. He cannot be left alone when hospitalized. While the hospital put up no resistance to my husband and myself doing shifts to create a 24/7 advocacy presence in Rob’s hospital room, its policies were set up to prioritize staff over patients.
Despite two and a half years of developing Covid “rooms” in hospitals, Rob’s IV lines were strung across the floor for at least six feet, and through a door hinge to IV pumps placed outside his room. Surely there are better ways to handle this to balance staff safety with patient safety.
Despite the fact that Rob has a personal baseline plan for tracheostomy and pulmonary care, the hospital’s ICU attending physicians pushed back on implementing this, without giving clear reasons. Despite the fact that Rob chose myself and my husband for his medical power of attorney.
Despite the fact that there’s a mind-boggling home health care worker shortage, and home nursing is perhaps even more affected than other categories of home care, the hospital attending pushed to discharge Rob before it was clear I could re-establish Rob’s home nursing supports (which are not 24/7).
Because the federal government and states are not providing enough funding for Home and Community-Based Services, Rob still relies on his dad and myself for “natural supports.” But when we risk becoming ill ourselves with Covid and needing isolation and/or rest, Rob is at risk for losing his HCBS waivers altogether, due to flaws that must be addressed in Medicaid’s institutional bias. So Rob’s civil rights, altogether, are at risk in a hospitalization for Covid.
As I’ve reflected on this experience, I am grateful for vaccines and effective treatments for Covid. But it is also clear that hospitals are simply OVER Covid and they are OVER dealing with disabled people who have it.
While the country is throwing away masks and getting on with their lives, the message to people like Rob and my family is pretty clear–you just have “special” needs; you don’t have a right to be part of society; we don’t have to accommodate you. You’re just part of that group of people who were going to die anyway.
And so, without either the federal or state governments setting Covid policies that protect the civil liberties and the very lives of disabled people, my people will continue to be vilified. Our disabled children will continue to get inferior educations (because most school boards seem anxious to use Covid to undermine the IDEA), our people will continue to die unnecessarily, and our people will continue to be shut out of the community presence we established through persistence and hard work prior to the pandemic.
In closing, it is amusing and enraging to listen to folks on social media debate the fairness of student loan cancellation, arguing that same old saw about “personal responsibility” that never seems to apply to situations where the pontificator really ought to be personally responsible. Like, say, wearing a mask to protect other people.
Jeneva Stone is the Little Lobbyists blog manager.