Thread by @TheChalis

Today is #LongCovidAwarenessDay.

I’ve never had Covid as far as I know, having had enough privilege to be able to make some sacrifices to keep my immunocompromised kid healthy. I don’t have #LongCovid, so why should I care? 🧵

I was 42 when Covid started. My family members routinely live into their mid to late 80s. Let’s assume I had 45 years left at the beginning of the pandemic.

I’ve avoided Covid so far, but it’s likely I’ll get it at some point. Following extreme caution, once every 5 years. /2

If someone infects me with Covid once every 5 years for my remaining time on the planet, in a best case scenario, I will have gotten it 15 times.

Statistically, the odds of getting symptomatic #LongCovid are about 1:10 per infection. Per. Infection. /3

That doesn’t guarantee I will be fully disabled by the 10th infection. It may happen much sooner, or not at all.

To be clear here, disability isn’t the problem. What I’m actually trying to avoid is pervasive ableism and lack of systemic supports. I know there will be no help. /4

So, it is in my best interest that I avoid getting Covid.

We know the way to avoid #LongCovid is to avoid getting Covid to begin with, and that is why I still advocate for prevention:

N95 masks, appropriate ventilation, effective testing, and better vaccines. /5

Once again for the people in the back:

Vaccines wane.

You can still get Covid.

You can get #LongCovid from a mild or asymptomatic infection.

Covid is still a problem. /6

But, because it’s increasingly likely as governments try to convince us there is no issue here that Covid will continue to plague us for many years, we also desperately need to find solutions for present and future #LongCovid sufferers. /7

It’s important to recognize parallels with other diseases, as that provides an important shortcut for finding solutions.

Covid shares some significant similarities with HIV, and #LongCovid sufferers describe symptoms similar to ME/CFS in some cases. /8

We have a moral obligation to provide robust social supports. SSDI has never been enough, and too many people are denied after multiple applications with all appropriate documentation. It’s being run like a private insurer who is avoiding payouts to help stockholders. /9

Because this is a problem that government created through repeated mismanagement of public health measures and horrific comms, there is a reasonable expectation that government should provide treatments and care at no cost indefinitely. Choosing otherwise is a moral failure. /10

The idea that those responsible for harm should be financially responsible for repairing it is firmly established in many legal systems around the world. There is also precedent for seeking justice from those who benefited from those who harmed others. /11

To recap:

#LongCovid needs treatment, truth in communications, prevention, social supports within the community, financial support, and understanding. /12

#LongCovid highlights myriad difficulties the existing #disability community has experienced for decades: inadequate SSDI, lack of home and community based services, and no marriage equality to name a few.

Someone recently told me “We never heard of ‘ableism’ before Covid.” /13

And that’s the whole problem, isn’t it? You don’t care about something until it affects you *directly.*

You fail to see many of society’s problems because you feel insulated by your circumstances. I share no such illusion because I know we are all connected in community. /14

That knowledge comes from some hardships I’ve experienced, but none of that makes me better or different than you.

The difference is that I stay open to learning, which means I stay open to caring, and the good news is that you can decide to make that change any time you want.