We are three loving and fighter mothers for our children who have intellectual disabilities. Three mothers terrified of 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 subjected to retrograde practices which correspond to institutionalized, that is to say systemic, neglect. They are robbed 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?
In our schools, children with developmental disabilities are grouped into “levels”: mild, moderate, severe, profound. 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 like your child to be graded by IQ? Why is this practice normal for children living with developmental disabilities? 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’s been cut off from all his friends and the environment he’s been in for four years, which is bad enough. But there is worse.
I screamed. The new school listened to me (thank them) and reintegrated reading instruction into Lou’s individualized intervention plan – three months into 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 elementary school tomorrow and that I forgot to throw a tantrum so that we could show him the numbers too. Damn.
Would you accept that overnight your child can no longer attend their learning environment full time because the waiting lists are too long? Imagine that, out of “fairness concerns”, from the top of his pyramid, a manager decided to sprinkle services so that more users could benefit from them. Parents would take to the streets if all children were affected, right? This silent reality is that of adults with intellectual disabilities and/or autism spectrum disorder in Montreal. Since the pandemic, 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 ! What about those young adults rocking the other four days? What about those moms and dads who are working – 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, put away. What awaits him? What awaits us as parents in our 60s?
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?
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’s talking about it? Do you have support in place? No way ! Despite the loss of bearings, a depressive state, cries 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 painting is not very original, unfortunately: we are legion in the same situation.
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.
Failing to revolutionize a deaf and blind system, we seek your solidarity as fellow citizens, parents, 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 lack a voice from screaming.
