GRIEF ABOUT ABLEISM: WORK OR SCHOOL. Your chronic illness may not affect everyone’s ability to work, but for those where it does, it can be a major source of grief in a capitalist society where our identities are synonymous with our work- and where accommodations to work or study can require you to get through a gauntlet of dehumanization.
How has chronic illness or disability affected your relationship with work or school? How do you feel about work now?
GRIEF ABOUT ABLEISM: MEDICAL ABLEISM. Medical ableism can be incredibly frustrating- not only because it seems to contradict the entire concept of providing “care”, but also because it is a major barrier to diagnosis, treatment, and social validity.
Medical ableism is also compounded heavily by intersectionality: by carrying other marginalized identities. In an interaction with a heavily unbalanced power dynamic, any additional factors that shift the patient’s power down can have a disproportionate effect.
How has medical ableism affected your access to health care?
Based on information from @whatsyourgrief .
1 – Non Death Loss.
Yes, I’ve gained a lot through my chronic illness. But I’ve lost a lot too, and it’s important to allow yourself time and space to feel how this change has affected your life.
2 – Non-Finite Loss.
11 years in, I have fewer Disability-Smacks-You-In-The-Face days, as @simplybphotos_yeg puts it. With non-finite loss, we experience the grief of losing the life we imagined we’d live. As @whatsyourgrief makes clear, this grief may go on for a long time.
3 – Disenfranchised Loss.
I’ve seen some talk around how grief around #longCOVID is ableist (I completely disagree, see the previous post)- when we encounter that, we may live with disenfranchised grief: the feeling that you are denied the right to grieve.
4 – Secondary Loss
Disability can set off a ton of changes. When the initial loss triggers a domino effect of more losses, those are secondary losses.
There are a bunch of reasons we might not take our symptoms seriously: prioritizing in genuine scarcity of care, overcompensating with your new normal, not understanding what is normal or abnormal, only hearing about extreme cases, and not wanting your doctor to see you as a hypochondriac.
Here’s the thing though: chronic illness travels in groups, because body systems affect each other. One diagnosis usually leads to another- and in the absence of a diagnosis, the “issues” can pile up pretty quickly.
It’s important to be aware of why you might be dismissing your own symptoms, and if your reasons serve you best.
LIVING IN CRIP TIME. For Zac and Kaia, crip time has always been a burden of possibilities.
But living in crip time forces disabled folks to implement and respect personal boundaries, offering us the opportunity to learn (imperfectly) how to listen to our bodies and the limits they set for us (Cepeda, 2021).
Like the pandemic, disability and sickness pushed us into these teachings— which in turn have opened up possibilities for what could be (Arrow & Grant, 2021, p.101).
We all stepped into a kind of crip time with COVID- how has it created more possibilities for what could be?
LIFE IN CRIP TIME. Queers and crips alike need “flex time not just expanded but exploded” (p. 107), with flexible starts and deadlines, hitting life milestones on alternative timelines, and new ways of thinking about time and our expectations of it (Arrow & Grant, 2021, p. 101).
In what ways does crip time affect your life? Has the pandemic changed the way you think about time?
CRIP TIME IS FLEX TIME NOT JUST EXPANDED BUT EXPLODED (Kafer, 2013). Kafer goes on, “It requires re-imagining our notions of what can and should happen in time, or recognizing how expectations of “how long things take” are based on very particular minds or bodies.
Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds. (p. 107)
How has your life changed to accommodate crip time?
ARE YOU TALKING TO ME?! or WHEN PEOPLE TREAT YOU LIKE A SILLY LITTLE SOMETHING WHEN YOU GET SICK. One of the consequences of healthism (the belief that all individuals have control over their health, and thus responsibility for it) is a sneaky side effect.
The accompanying belief is that people who are sick are just not trying hard enough, or perhaps, not very bright. (This also applies to fat folks and people living in poverty.) After all, if everyone has the SAME opportunity to pursue and achieve good health, then we must be doing it wrong.
In some ways, understanding healthism and neoliberalism helps me manage better when strangers treat me like a doofus because I haven’t figured out how to un-sick myself, with simple cures like kale (applied rectally).
But when folks who know me suggest in a patronizing tone that maybe I just haven’t considered taking acetaminophen and (of course) yoga, it’s incredibly frustrating, disheartening, and belittling.
It’s part of the continued infantilization of disabled people.
So often, people’s illnesses are only taken seriously when they can refer back to their past as a PhD candidate, top athlete, or high-powered executive.
I got sick at 20, right after my first semester in college. I have no storied history in the workforce to back me up, no proof that I’m a good citizen of capitalism. No way to say, “before I got sick, I was worth something in your value system” and it’s HARD.
How do you feel about not having had a work history before illness?
In some ways, I’m still seeking that kind of validation. I’m lucky that in most of my social circles, work doesn’t define us, that I was able to finish school, and that I am able to work (for pay) a teeny tiny bit.
MILLIONS OF NEW PEOPLE WILL MEET THE CRITERIA FOR ME/CFS. 10% of all folks who catch COVID-19 will meet the diagnostic criteria for M.E., and yet most of those people will receive little to no support.
Here are the basics:
💗 M.E. is characterized by post-exertional malaise (PEM) or delayed symptoms following exertion. Exertion may be physical, cognitive, emotional, sensory, or environmental.
🥕 There is no medical test for M.E., but there ARE many quality studies showing clear biological deficits in people with M.E. including low blood volume, mitochondrial deficiencies, and more.
💗 M.E. can become permanently worse with over-exertion, so learning your limits (though they may change constantly) and staying within them is very important. 50% of people with M.E. are housebound. People with Very Severe M.E. are bedbound, intolerant to light or sound, and often require medical support to receive nutrients.
🥕 M.E. has several common comorbidities including dysautonomias (especially POTs), hypermobility spectrum disorders (HSD), and that MCAS.
💗 M.E. is thought to be triggered by viral infection (hence the COVID-19 stats). Sometimes the initial infection is hard to identify, and it can be masked by other events that appear to trigger the M.E. but may actually have triggered the infection that lead to M.E.
Living with M.E. can be incredibly difficult. Though my life is fulfilling and full of love, it also takes enormous effort to deal with an illness that touches every part of my life. Every want, every task, every obligation comes with calculations and compromises that aren’t even guaranteed to work out. It’s exhausting and disheartening- and the lack of control over your own life (not to mention the medical neglect) is known to be actively traumatizing as well.
The Willows Work 