"… the LGBTQ+ community living with disabilities faces an arduous uphill journey toward recognition, meaningful support, and equitable access to quality care."
♿ 🛏️
C'est jusqu'au 6 avril,
l'exposition "De la vie au lit",
à Montréal, mais proposant des modalités de retransmissions web,
et il s'agit du travail fondamental de l'excellente commissaire française Sarah Heussaff (qui est actuellement publiée dans le dernier Multitudes).
Je suis profondément heureux de ce travail, il correspond notamment à plein d'échanges entre Sarah et moi, et la continuité de son travail pointu dans les Disability Arts / Arts Handicapés.
C'est tout un pan de la culture handie & malades chroniques qui est étudiée via nos vies alitées puissantes. Nous existons allongé-es.
Along with the usual news items covering research and advocacy this week's news summary includes a thread with media coverage of #LongCovidAwarenessDay
Let’s talk about THAT NPR article. I’ve taken a few days to grieve for those forced into dangerous situations by spouses/family who would rather go back to normal than protect their vulnerable loved ones. Where has kindness gone & how do we stop treating ppl as disposable?
I wish I could say I was shocked to read that piece - but after 4 years of being abandoned by more people than I care to admit - little surprises me anymore. We were “all in this together” for a few weeks - and then people got sick of it.
People don’t want to change their behaviours. For many healthy & privileged people the pandemic was the first time they ever had to make sacrifices or change their “normal”. Most didn’t like it.
Some people were empathetic enough to see the isolation from stay at home orders and connect it to the lives of disabled people. I had a number of people reach out and say things like “wow is this what your life is always like?”
Of course my answer was “Yes”. My chronic illnesses isolated me long before the pandemic - Covid only intensified that isolation. When people would draw parallels I felt great hope - I imagined we would move forward to a more inclusive society.
Instead what has happened is people got tired of having to make sacrifices. Government & public health told them that they no longer had to protect the vulnerable & that it was OUR responsibility to shield & isolate.
So they stopped masking & went back to normal.
There were some holdouts - usually people who love or care for a vulnerable person. But as it became clear that herd immunity wasn’t coming, that Covid wasn’t going away…. Even those people grew resentful of the modifications to their daily lives.
They started pressuring their vulnerable loved ones to stop worrying so much & go “back to normal”. Many started doing high risk indoor actitivies and simply lying about it - while others wrote articles for NPR.
The sad reality is that people now view the vulnerable as THE people who ruined their lives. After all - mask mandates & stay at home orders were sold as a means of “protecting the vulnerable”. People are angry their “normal” was altered & they’re not being subtle about it.
I would argue they should take that anger and direct it where it belongs - at government and public health officials who’ve bungled the messaging around Covid from the very beginning. The people who lied & downplayed the risks & cost us our best chance of containing Covid
Of course most leaders and public health officials are telling people what they want to hear. That the threat has passed, that we’ve “defeated Covid” and that they can party like it’s 2019. As a result people aren’t angry at them - they’re angry at the vulnerable instead
They’re angry at disabled people for trying to protect themselves, at advocates for reminding them that we’re STILL in a pandemic and at the sight of a respirator. These things & people remind them of that time in their life when they couldn’t do what they wanted.
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They don’t want to be reminded of the few weeks or months they had to sacrifice for other people. They want their “normal” back. And they definitely don’t want to consider they too could end up disabled like us “vulnerable people”.
So they buy the lies despite overwhelming evidence that the threat is still with us. And they direct their anger towards disabled and vulnerable people instead. They put us at risk - often deliberately - so that they can stay in their denial bubble of normalcy.
I’m sick of it. It’s made life much harder for so many people and it didn’t have to be this way. We understand Covid & how it’s spread and we have the tools to keep everyone safe. The reason people don’t want to use them is that they fear change & adaptation.
They also don’t see themselves as vulnerable. They still see Covid as only an issue for those “other people” that they think they’re so much better than. So they do nothing to protect us.
How do we change this? I don’t know anymore. Given most of us can’t even get our loved ones & doctors to take steps to protect us… what chance do we have of convincing strangers?
I don’t have the answers but I do know that writing articles shaming your vulnerable spouse is NOT the way. Lying & exposing vulnerable loved ones to reinfection is NOT the way. Refusing to take any precautions & getting Covid over & over is NOT the way.
We can clean & ventilate the air we share. We can mask in high risk settings. We can demand mask mandates in hospitals, free access to tests & better vaccines & treatments for Long Covid. There’s much we CAN do if we would stop othering people & admit there’s a serious threat
For now the best I can do is protect myself & those around me and continue to tell stories of challenges I face. I encourage others within the disability & Long Covid communities to be ready to welcome many new members - our ranks will keep growing in the ‘let ‘er rip” era
We need to remember how scary it can be when you first realize you’re chronically ill - and we need to have compassion for those joining us regardless of how or why they ended up here. When we figure out how to work together as a collective voice - we will be unstoppable.
I see far too many chronic illness patients being dismissed from the ER for “faking”. Is there not a duty to run tests to ensure something isn’t missed before discharging someone as a fake? Given the consequences could literally be their life?
This happened to me years ago -
I had major OB GYN surgery and a week later was getting worse not better. Weak, in pain, swollen, loss of appetite etc. Went to the ER and was treated like a “nuisance” and asked what I “expected” after major surgery. I tried to explain I expected to improve a little each day - and I was clearly decompensating.
They decided I was faking and sent me home. This repeated 3 times over the course of a week - each time I was sent home without any tests.
Finally my then boyfriend took me in for a 4th time - literally carrying me to triage because I could no longer stand up. They got angry and said “we’ve already told her there’s nothing we can do.” He said he wasn’t taking me home to die. He demanded they run tests. The situation escalated but they finally acquiesced to the most basic blood work and an ultrasound. I’m incredibly fortunate they listened to him - and incredibly angry it took a man causing a scene to get me care.
Turns out I had a hugely elevated white blood count, a ferritin of zero and a hemoglobin of 63. I had a massive infected abscess in my abdomen that had been caused by an internal bleed left unchecked for weeks. I was rushed to emergency surgery and needed multiple rounds of blood transfusions and spent weeks in the hospital.
Had I gone home - I more than likely would have died. Had I been alone - I would have died. It should never be this way and from what I’m hearing from other patients it’s only gotten worse since Covid.
Please listen to your patients. We KNOW our bodies. Listen to women & marginalized individuals… don’t make us bring someone else to tell our story. Listen to people who come back over and over again - they clearly need help. Have some compassion and don’t assume someone is faking just because you don’t see an obvious issue.
#ViriosTherapeutics may have a combination antiviral vaccine developed for #fibromyalgia as early as 2026 if their Phase III trials go well this year. They aim to put #HSV1 back to its dormant state so the body’s symptoms lessen or disappear altogether.
I can't bind because of chronic pain, and trans tape isn't holding my tits because it's heavy, I can't do surgery either because it takes more than morphine for me to not suffer, what should I do? I'm lost.
This #LongCovidAwarenessDay I want to say sorry. I’m sorry to everyone who’s joined the ranks of the chronically ill & disabled because our leaders, public health and fellow citizens refuse to take Covid seriously.
Those of us who were disabled before the pandemic could see this wave of chronic illness coming - and many of us have been screaming from the top of our lungs the last 4 years. Begging people not to take their health for granted & to wear a mask and protect themselves. Warning them that there are no do-overs once you become chronically ill.
Unfortunately very few people are listening - and many won’t understand the true devastation of #LongCovid until it directly impacts them. At which point it’ll be too late.
Despite seeing these waves of disability as an inevitable consequence of “let er rip” Covid strategy - one thing I did not see coming was how many people would willingly embrace not only ableism - but full on eugenics.
People in my own life who were previously kind & supportive have become cruel and angry. The masks have been ripped off. They don’t hesitate to tell me that they blame me for the restrictions placed on them in the early days of Covid - and that they will never again allow their freedoms to be infringed on in the name of protecting the vulnerable. One even went as far as to say “you’ve been sick for years - just die already.”
People who say these things don’t understand what disabled people understand all too well - your health is not a permanent state. Everyone will become disabled eventually…. Some of us earlier than others. Also many people who think they’re invulnerable are already vulnerable and don’t even know it.
Yet rather than adapting behaviour and pushing for a new normal that makes the world safe for everyone - most temporarily abled people have instead doubled down on hateful eugenics talking points and want us to stay home forever (or worse - die). It needs to stop.
Covid is airborne and we all share the air. “You do you” individualism is quite literally killing people. We need to start caring about the air we share as this will lead to a healthier society for everyone. Until then we need to mask up. It’s not hard, it’s incredibly effective & it might save someone’s life.
If you want to read more about the “friend” who told me I should “just die already”… I wrote about it & the behaviour changes I’ve noticed throughout the pandemic here: https://disabledginger.substack.com/p/just-die-already
Thanks to Tanya Lewis & Josh Fischman for interviewing me for this SciAm #podcast on the recent publication of an NIH study on myalgic encephalomyelitis/chronic fatigue syndrome that I volunteered for.
We warned everyone back in spring of 2020 that this would happen if the pandemic was not kept under control.
I think the very broad definition of long covid used here is inflating numbers of people who are disabled...but no doubt many are & many more are less productive than before infection.
Ignoring post-viral illness continues to fuck us all up.
A story about one woman's decent into energy deprived #ChronicIllness. I can absolutely relate, but for me it's #ChronicPain zapping my energy like you wouldn't believe. The best I can get out of life right now, is trying to live a normal life on the internet, as that just requires two thumbs. If I didn't have the internet, I may not even be alive today.
Please take a second to read this very short article about an invisible life-controlling illness, so that the 'lazy' bias-ness can be killed ⬇️
"Composer Creates Concerto to Shine a Light on Chronic Illness: Danish composer Martin Byrial's latest concerto is based on stories sent to him from families fighting #chronicillness"
"It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness."
Our focus for March is Multiple Sclerosis. Join the Servant of All team as we discuss the challenges many face receiving proper diagnosis and treatment, as well as ways to support those who cope!