♿ 🛏️
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.
Got my postal vote for upcoming referendums in Ireland, so I thought I would remind people of this option for future votes (it's too late for the referendums).
"To explore experiences of patients who have complex chronic conditions, such as #fibromyalgia & #chronicfatiguesyndrome, when they request medical assistance in dying (#MAID) in Canada"
An emeritus professor Edzard Ernst who has focused on researching Complementary & Alternative Medicine takes a sceptical look at an Ear Acupressure Device that has been promoted for ME and other conditions
My scooter doesn’t have a tight turning circle so using it on a bus is a lot harder than my powered wheelchair but after my lesson today I feel confident enough using it on buses 😀
My heart goes out to every disabled and chronically ill person who’s holiday season was largely spent in isolation. No rooms filled with laughter. No trips or getaways. We don’t get a break just because it was the holidays and many of us don’t get to celebrate at all. Sending 💗
"Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis: Elizabeth Hope, who was diagnosed with ME, has since overcome her adversity to become an award-winning wheelchair dancer"
I'm considering going to this protest, "“Scrap The Green Paper” coalition calls on the Department of Social Protection to "Scrap the Green Paper" on Disability Reforms." outside Leinster House on Thur, Dec 7.
STAT Meghan O´Rourke on a medical system not built for #chronicillness - and the 'invisible kingdom' that could spur change
Interview with Megan O´Rourke, journalist and author of the book "The invisible kingdom". She talks about society's resistance to #chronicillnesses and the need for recognition and investment in these conditions.
Disability At Home:
"This website documents the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible..."
"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."
"But I was wrong. I was and am disabled. I got the [parking] placard and ended up using it every day because it was a life saver. I wished I had gotten it sooner when I needed it, long before I finally talked to my doctor about it."
“I’m on the verge of losing it at everyone because everything seems so loud, like it’s way louder than normal. And it’s so annoying it makes me angry. Like even someone drinking a drink seems like they have megaphone at their throat.”
“I’m often so tired that even taking a deep breath is exhausting. I will even put off going to the bathroom for as long as possible because just walking the few feet from my couch to the restroom feels like walking a mile. My whole house feels like it triples in size on my bad days and everything is so far away.”