The Cripping Cultural Work residency at Showroom MaMA (Rotterdam) is past halfway and ends this year. We opened the space on the 11th; I’m showing work made these past months. Mid-residency, it gathers small growths, stray thoughts, and swings between rage and tenderness. I live parallel lives: needing care, giving care, working, applying. Here I try to dissolve that split, to come out as sick, and treat CV gaps as work, practice, resistance. Not to be defined by them, but to let them in and learn crip time.
I wanted to try how sound can be felt next to heard, so I built an armchair as a sensory object for embodied listening: narration travels through the body via bone conduction and other transducers.
Behind it, a textile fort stitched from common Bulgarian embroideries passed down in my family. Perfect domestic scenes with no mess, illness, or care work. Like a CV. I add my own embroidery at the pace of crip time, threading in what’s missing: gaps, breakdowns, stops and starts.
My son calls our forts “places to go and cry.” This one isn’t spectacle. It’s an architecture of care, a space to pause and refuse the usual tempo. Made for children, a space owned by them in the gallery; adults are welcome too.
If in Rotterdam, pass by MaMA
#crip #chronicillness #invisibleillness #accessibility

Find New Meaning
https://cfsselfhelp.org/library/10-find-new-meaning

"In sum, we experience the loss of the person we used to be. The pervasiveness of loss presents us with one of our biggest tasks: finding meaning when so much has been taken from us"

A little bit of what might be called psychobabble near the start but interesting topic

@mecfs
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME @longcovid
#LongCovid #POTS @pots #chroniclife
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

2/

"Akin to the ideal victim, the ideal claimant of hidden disability must navigate a system built by (and from the perspective of) those with specific preconceived notions of what it means to be a person with a disability and to present as one."

#MEcfs #invisibleillness #hiddenillness #spoonie @mecfs #hiddendisability #invisibledisabilityawareness #invisibledisability #invisibledisabilities

Seeing is Believing:Identifying the “Ideal Manifestation of Hidden Disability” in Ontario’s & Quebec’s Social Benefits Tribunals

https://digitalcommons.schulichlaw.dal.ca/dlj/vol48/iss2/1/

"advocating for a shift away from entrenched stereotypes towards a more inclusive & equitable system"

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #chronicillness
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#Disabled
#Disability

World Arthritis Day .

#arthritis #chronicpain #chronicillness #jointpain #rheumatoidarthritis #fibromyalgia #invisibleillness #pain #painrelief #osteoarthritis #autoimmunedisease #health #kneepain #backpain #lupus #arth…

Vibrant Vitality

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD"

From:
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine

https://www.ochsnerjournal.org/content/25/3/152

#chronicillness
#chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
#LongCovid #PASC #POTS @pots @longcovid

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