Needs before politics
by Jennifer Maccarone
Every year, April 2 is World Autism Awareness Day. For some, it is just another day, but for thousands of families like mine, autism is a part of our lives, 365 days a year.
As a mom to two young adults on the spectrum, I can attest to the fact that my children have changed my life and have made me a better person and a better parent, have given me a stronger voice and resilience I didn’t know I had. And while their challenges continue, I am proud of their success. But there are so many things I wish I knew way back when they received their diagnoses.
I wish I knew then that I wasn’t alone and that it didn’t matter what anyone thinks (ice cream is acceptable for dinner; it’s okay to hide from the world in your garage; TV can save your life). I wish I knew then that when things were at their worst, they would get better. I wish I knew that it was okay to feel sad, jealous, angry, frustrated and overwhelmed. I wish I knew how hard it was going to be to get and keep a spot in daycare, and that school for them meant a full-time job for me. I wish I knew that every transition required meticulous planning and support. I wish I knew in advance that when they turned 18, they would lose their pediatrician, their government subsidies and that their access to support programs would end.
Helping and supporting my kids meant I became involved everywhere I could: School, organizations, community groups and more, with a view to providing opportunities to increase understanding and acceptance of autistic people.
In October 2018, I was elected as the MNA for Westmount–Saint-Louis and became the first spokesperson for autistic people in the Quebec National Assembly. Since then, I have been tirelessly striving to change the lack of resources and support for families with children and adults on the autism spectrum.
To date, I have formally proposed six different mandate initiatives to the government – all of which the CAQ voted against. I asked them to study and find solutions for: the high number of students with special needs who are forced to homeschool, or who do not have access to any educational support; the lack of access to daycare for children with handicaps; the transition from youth to adult; and inclusion in the workplace.
Every time the government voted against my suggestions, they refused to acknowledge the reality of these families and offer a helping hand. Beyond the distress this causes, I am deeply concerned that politics come before the needs of those who are vulnerable.
Today if I had a message for the Premier, it would be that autistic people and their families don't just need a speech during autism month, that I know things need to change, and that we can only do it together. Our political parties and values may be different, but our goal should be the same.
Like my kids, it may take me longer to achieve my goal, but I will not give up, and for the sake of all those whose voices we cannot hear, we need to always strive to get there. Autistic people and their families need you, and it’s not too late to act.
Jennifer Maccarone is the MNA for Westmount–Saint-Louis and the Official Opposition Critic for Diversity and Inclusion, Families, Social Solidarity, the Fight Against Poverty, LGBTQ2 and for Persons Living with a Disability or with Autism Spectrum Disorder. Contact jennifer.maccarone.wsl@assnat.qc.ca or 514.395.2929.
