We are three loving and fighter mothers for our children who have intellectual disabilities. Three mothers terrified by the future, resolutely angry at the chronic invisibility of our children. And forced to hope for a revolution.
Our observation is brutal: our young people are subject to retrograde practices that correspond to institutionalized, that is to say systemic, negligence. They are deprived of their potential; their dreams are ignored; they are forgotten before the extinguished screen of their future. Would you accept this treatment for your children?
Lou, 12 years old
In our schools, children with intellectual disabilities are grouped by “levels”: mild, moderate, severe, profound impairment. We no longer talk openly about IQ (intelligence quotient), but the assessments that help decide which class a child will go to nevertheless include intelligence tests.
Would you accept that your child be classified according to his intelligence quotient? Why is this practice normal for children living with an intellectual disability? We are told that it is for the good of our little ones, for the allocation of educational services adapted to their needs. Except that.
My son Lou (not his real name) was kicked out of the school he was attending when his intellectual disability went from ‘mild’ to ‘moderate’. He was cut off from all his friends and from the environment in which he had been evolving for four years, which is already violent enough to cry. But there is worse.
Despite his moderate impairment, Lou is a kind of nerd: he has a remarkable facility with words. However, in the DIM class (moderate disability), we stopped teaching him to read. Children in DIM follow the CAPS program, which focuses on social skills. Exit academic learning.
I screamed. The new school heard me (we thank them) and reintegrated the teaching of reading into Lou’s individualized intervention plan – three months after the start of the school year…
Should I rejoice? Impossible. I think of the other students. Sorry, commies: if your parents can’t yell, you’ll learn to read in another life. I also realize that my son is finishing primary school tomorrow and that I forgot to throw a tantrum so that we could show him the numbers too. Damn.
Thomas, 19 years old
Would you accept that, overnight, your child could no longer attend his or her learning environment full-time because the waiting lists are too long? Imagine that, for the sake of fairness, from the top of his pyramid, a manager has decided to sprinkle services so that more users can benefit from them. Parents would come out into the streets if all the children were affected, right?
This silent reality is that of adults with an intellectual disability and/or an autism spectrum disorder in Montreal. Since the pandemic, the services previously offered full-time in day centres, centers and workshops are given “in blocks”, for a maximum of three days a week. Big deal ! And those young adults who rock the other four days? And those mothers and fathers who work – or have to stop working?
Thomas is 19 years old, in two years it will be the big jump… without a parachute. His school career will be over. And his dream of learning to read, shelved. What awaits him? What awaits us as parents who will have reached their sixties?
And above all, what happens to this commitment of the State: my disabled child, despite all the challenges he will face in life, will become a full citizen in an inclusive Quebec open to difference?
Mary, 28 years old
Would you accept that at the age of 21, at the end of his school career, your young full of energy is plunged into an abyssal void… without a project, without resources? This is the reality of my daughter, Marie, for whom we try to cobble together a schedule with the few activities we can find.
As confirmed by the Royal Society of Canada1, the pandemic has disproportionately affected people like my daughter and their loved ones. Did you know ? Who talks about it? Do we have support in place? No way ! Despite the loss of bearings, a depressive state, calls for help, radio silence! We were even told that our daughter would have to attempt suicide for support…
At the end of my rope, faced with the anemic state of the services offered, I made the difficult decision to leave my job to assume my role as a caregiver to Marie. This table is not very original, unfortunately: we are legion in the same situation.
Time passes, I get old. How can I not anticipate what will happen to my daughter when my strength dwindles or I die? Where will she go to live? In an intermediate resource? Will this place meet his needs?
As a society, did we not decide, 50 years ago, to take people with disabilities out of psychiatric hospitals to integrate them into society and increase their full social participation?
In the era of inclusion and all-out diversity, our children are ignored, made invisible. Kept silent. Systemically. It is against the charter. It is an open violation of human dignity. And it’s an insult to our collective intelligence, if such a thing exists.
What do we do now ?
Failing to revolutionize a deaf and blind system, we seek your solidarity as fellow citizens, parents and allies.
There are at least 170,000 people living with an intellectual disability in Quebec. That’s a lot of dreams of inclusion on the ice… and parents who are voiceless from screaming.
* Anouk Lanouette Turgeon is co-responsible for Parents à la bout, employment counsellor, author; Isabelle Perrin is a resource person for the Users’ Committee of the Montreal CRDITED; Anik Larose was Executive Director of the Quebec Intellectual Disability Society from 2015 to 2021.