Thread by @jenbrea

Disabled folk…as we are know, medicine has long held a major blind spot when it comes to disability. I think this gap is feeding into poor public education about the true risks of COVID, but it is hard to have this convo with MDs who feel under siege and under-supported…

…and are experiencing their own traumas. At the same time, remaining silent about constantly being left out (not counted, barely mentioned) isn’t an option. I am thinking here about #HighRiskCovid19 but also about #longCOVID and this reality

https://twitter.com/jenbrea/status/1470975455188557827

If we had educated the public from day one regarding the risks of long-term disability up and down the age bracket, rather than solely the concern of those most at risk of dying, could we have prevented many deaths and injuries?

https://twitter.com/jenbrea/status/1238988538844033024?s=20

Could we have cultivated broader support from precautions?

Aren’t we making a massive mistake right now talking almost exclusively about vaccination and avoidance of death rather than the importance of avoiding **transmission**, given that we know that #longCOVID can occur after “mild,” asymptomatic, breakthrough, etc. infections?

Shouldn’t we be concerned that most healthcare *providers* actually don’t know this (as evidenced by the poor mask utilization people observe in many healthcare settings), that our public health officials are largely not talking about this…

And neither are the most influential MD/MPH Twitter accounts and media commentators?

Wouldn’t it be relatively trivial to emphasize, amid other messages:
1) The high prevalance of #longCOVID/disability
2) the risks of transmission
3) the importance of masks, ventilation, social distancing to prevent transmission and #longCOVID/disability

Disabled/chronically ill/#longCOVID people and those adjacent by and large “get it.” Everyone else seems to think we are asking the impossible, which…I just don’t get.

I can only think that it’s that the pandemic has done little to bridge the knowledge gap among the majority of healthcare professionals re: post-viral illness.

What’s maddening is that it’s difficult to even convince them that this gap exists or that our patient communities know *a lot* about how to go about bridging it.

Anyway, I think a lot of us thought that going from tens of millions (globally) disabled by infectious disease to hundreds of millions in two short years would somehow change medicine. Maybe that only happens *after*, when we’re forced to reckon with what actually happened.

What a waste

Anyway, I started this thread to try to solicit ideas re: whether there is a better ways to talk about this, specifically as a broader disabled community vis-a-vis medicine (not only #longCOVID). Is there a bigger picture frame that could be useful that I am missing here?

Maybe this is something @WildNycgirl’s “Denver Principles for ME” (or more broadly, post-acute infectious illness) can speak to, in part?

https://twitter.com/WildNycgirl/status/1470888803883790348?s=20

*for precautions