Down Syndrome, Covid, Death. Yeah not so uplifting.

I think a lot about how to process living through a global mass death event. I don’t know how to do it even for myself, but am pretty sure that we’re all experiencing levels of trauma, albeit in very different ways. I try to read stories of people we’ve lost until it gets too much. I try to do what we can to keep us safe while also maintaining our connections to the world. I try to write about places where my voice might be useful.  I expect the traumas of living through this to last a lifetime.

Here’s two stories I’ve been following lately. Vincent Welch, a 35-year-old man with Down syndrome living in Michigan, living at home, tried to get vaccinated, but couldn’t get a shot. There doesn’t seem to have been enough vaccine in the area and the health of people with Down syndrome – who seem to be ten times more likely to die from covid (and four times more likely to be hospitalized) – just isn’t treated as an emergency.

Welch caught covid, went to the hospital, went on a ventilator, then died.

In British Columbia, a two-year-old with died from Covid. The internet (at least in my networks) has been a-flutter with unconfirmed reports that the child had Down syndrome, and normally I wouldn’t report something unconfirmed like this, but it’s the discourse I’m following. For one set, the child’s down syndrome is the complicating factor that makes the death explicable and not so scary for their children. For another set, the down syndrome is yet another sign that we’re not protecting our most vulnerable (and that our disabled kids matter).

The coverage and discourse (so what’s in the media specifically and what’s being talked about generally including in the media) of risk factors throughout Covid has been revelatory, but not surprising, For one set of people, risk factors like Down syndrome intensify the need to work for public health for all. For others, risk factors enable people who consider themselves not-at-risk to disregard public health and presume themselves immune. But in both cases, the focus on conditions like Down syndrome is othering. In one case negative, in the other positive, and I’m always interested in the ways that positive language around Down syndrome — people who genuinely want to help and protect — still is othering.

The discourse varies, naturally, by the type of risk factor: obesity brings shaming; the risks to the elderly makes the young proclaim their ageism loudly, and so forth.

Senator Ron Johnson, for example, said vaccines only need to go to “the vulnerable.” While Sarah Palin, in acknowledging her and her family’s (including Trig, her son with Down syndrome) recent positive diagnoses for Covid, offered a really pretty good statement about everyone needing to be careful, highlighted the vulnerability of people with “special needs.” Palin’s statement is MUCH preferable to Johnson, but still reveals how ideas about disability and vulnerability work.

At any rate, the pandemic roars on, my son – 14 – cannot be vaccinated, although I’ve had some good news about Minnesota readying to prioritize kids like him once pfizer is approved (they are the first vax with a 12-16 test with results in), and living through a global mass death event continues to layer traumas on us day by day.

Would you like to know more?

I wrote about positive discourse for my first piece for CNN in 2012 (and third op-ed ever)  and fairly frequently thereafter, including this piece on not comparing people with Down syndrome to endangered animals.

I’ve written about Sarah Palin in 2008 (on abortion politics and Down syndrome),on her use of forced baptism metaphors, and on her memeing her son as a prop in the culture war. We’re not friendly. But her statement was actually pretty good and we’re going to need a lot of people I dislike to urge basic public health measures.

Don’t miss this mock New Yorker cover (not for the magazine, but for class) on loss and covid in a thread of amazing mock covers. It made me gasp and filled my eyes with tears.

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