Basically, it’s all a question of rhythm. Even in a global pandemic, the old people slow us down or take their time to die, toddlers dawdle, the sick are absent, pregnant women slip away, the bruised souls struggle to follow, and what about the parents of autistic children? Or have ADHD? Or anxious? Those, yes. Always complaining about the system, wanting more in the name of neurodiversity.
Ah, the system! Everything has been delegated to the welfare state, which produces mysterious acronyms. Children, teens, the old, the disabled, the sick and the desperate have been pitched to him. By telling ourselves that with the taxes we pay, the machine was going to give it back to us. That she would take care of everything, even the shepherd’s pie. And we could finally find the Nordiques, or we could have our damn baseball stadium at zero cost. As my father used to say: ” There’s no such thing as a free lunch. »
Man is the only animal endowed with speech. Capitalizing on this advantage, he learned to speak to say nothing. He only shuts his mouth in one circumstance: in the face of injustice.
You have to have been vulnerable – or accompanied a person who was – only once in your life, to have lost yourself in the labyrinth of the administrative “machine”, its relentless logistics, its rules that no one understands, its “before. the hour is not the hour and after the hour, it is more the hour “to grasp the ubiquitous scale of the farce.
This machine has become so complex that it ends up justifying its very existence by creating an opaque fog impossible to pierce for the honest lucid citizen. You need keys to open the doors. And we install locks to make locksmiths work (appreciate the attached organization chart, COVID version): bit.ly/3px3xYA), “assistants to the direction of prehospital services, emergencies and fluidity”. A success. The emergency room occupancy rate at Pierre-Boucher Hospital in Longueuil was 234% this week …
The twelve labors of Rose
The documentary play Rose and the machine tells the true story of a mother of an autistic child (Maude Laurendeau, mother of Rose) facing this dystopian maze in an infernal machine that looks like Mad house of Asterix. She is the only one to fight against the medical diagnosis, the incredible follow-up – then the education system – against a background of bureaucratic neglect and filthy inconsistency.
This giant system, shielded by acronyms, CLSC, ICI, CRDI, CIUSSS, CISSS, protects itself and muzzles its employees and other pawns responsible for defending the locks and finding the keys for you. When they don’t lose them… Maude Laurendeau, she was diagnosed with autism spectrum disorder for her three-year-old daughter, three letters written by a doctor on a post-it : TSA. The doctor (in a hurry) told him to call the CLSC to be eligible for ICI (intensive behavioral interventions). She has to go to the CLSC three times before seeing a TS (social worker)… who will lose the file. Welcome to the ordinary nightmare of people who are not 100 km / h on the highway. And it’s you and me one day or the other.
Our obsession with time passing, which is won or lost, makes us forget that it is we who spend
“We are in a time economy, where everyone has to prove their effectiveness. Stakeholders must justify everything. It’s a frantic pace, ”said Maude Laurendeau in a telephone interview.
In this documentary piece, the excellent Julie Le Breton (godmother of Rose) plays 43 characters, each time adding a more absurd dimension. The world is moving too fast for Rose. “In fact, the world goes too fast for everyone”, specifies the author of the play which does not point the finger at anyone, but unpacks the absurdities of a system in front of which it multiplies the points of view in its investigation on the ground.
Real theater from real life
I have a weakness for documentary theater. Behind these pieces, there are years of research and experience. I saw I like Hydro, by Christine Beaulieu (four hours), read All inclusive, by François Grisé, on RPA (private residences for seniors), and I would see Rose and the machine. Its scope greatly exceeds autism, which affects 1.5% of the population. “There have been a lot of echoes since the first one,” admits Maude. It makes me feel good. But it doesn’t feel good to see so many people recognize themselves in this distress. The show comes at a good time. The health and education systems are sluggish. We have become very lonely. “
Only faced with a machine that suggests that we medicate our cherubs as soon as they no longer “follow” or disturb overworked teachers. Over 40% of the kids in my son’s class were on medication when he was in grade 6e year. Sorry if I repeat it here.
I just want it to be… more human. I do not understand why the system is so detached from the reality of the people.
“It is estimated that 50% of mothers quit their job within two years of being diagnosed, so everything that the child requires in terms of care and procedures is incompatible with the fact of working,” reports Maude Laurendeau. Just that.
A father of four, including a little girl with autism, testifies in Rose ; he spent two months All. The. Days in front of government offices for help. Eventually, the machine contacted him to offer him a solution due to the hype, even though a clause in the health services law exempts the state from helping families! As this father demanded the same services for all autistic children, he lost those he was entitled to on the sly (in the private sector). What does this father say after years of more or less lost battles, a GoFundMe and piles of files for his daughter Charlotte? “We have to have a society that takes care of each other. We need to be mobilized as a community. And if we cannot access basic assistance for our children, this system must fall. I blame capitalism for that, absolutely. It can be done peacefully through mass protests or by shutting down the economic system. “
We can also believe in Santa Claus. Or buy a sand bag.
cherejoblo@ledevoir.com