His name is Jonathan Marchand. In 2010, in his early thirties, following a very serious pneumonia, he was forced to move to a CHSLD.
This week, in the midst of a pandemic, he is making a gesture of great courage. In front of the National Assembly, he walled himself in a cage. The symbol of his decade-long confinement in a CHSLD is scathing.
His claim is clear. For him and thousands of other adults with disabilities, including those who have been handed over to CHSLD, he is demanding the right to live freely and with dignity at home and in society. How?
It proposes the concept of subsidized “self-directed personal assistance” – home support modulated according to the needs of the person and not according to the dictates of the health and social services system.
We always forget it, but more than 3000 women and men under 65, physically and / or intellectually disabled, live in CHSLDs.
Instead of offering them concrete support to live at home and in society, our governments have preferred to lock them in environments contrary to the life to which they are nevertheless entitled.
Dehumanized
I know it firsthand. I will never forget this brainless “head of service” of a CIUSSS who, without flinching, asked me why I did not “place” my intellectually disabled sister “immediately” in a CHSLD.
For a long time, our governments have indeed “parked” vulnerable people, of all disabilities and ages, in so-called “living environments”, public or private. They have been forgotten, dehumanized, ghettoized.
For a long time, like so many others, I denounce it. Like so many others, I am putting forward a much more humanist vision of this other blind spot in our “living together”.
In this vision, one of the main pillars – but not the only one – would be an expanded home support program aimed at preserving the quality of life of many vulnerable Quebecers and their caregivers.
A matter of choice
A rare exception to the inaction of past regimes was the idea of the former Minister of Health, Réjean Hébert, of universal autonomy insurance. Idea that the Barrette-Couillard duo hastened to abort.
This is why Jonathan Marchand is once again calling for action. Political, collective, united and responsible action. I will sum it up in these words.
We know that there will always be a need for so-called closed establishments where some very vulnerable people, young or old, depending on their own circumstances, must live.
In this, the future innovative homes for the elderly and alternatives, announced by Minister Marguerite Blais, will be of great use.
Elderly or disabled people who are more fragile, young or old, are however demanding more. What they ask is to finally have the CHOICE of their conditions and where they live.
A choice they want to be able to exercise in freedom and dignity. They want to be able to choose for themselves between living at home or in public or private accommodation.
However, as long as a true universal home support program is not in place, their right to choose simply does not exist.
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