Learning that tomorrow brings new beginnings
Jennifer Maccarone’s children Bianca and Samuel visit the National Assembly.
By Jennifer Maccarone
Over the past few months, the COVID-19 pandemic has changed our lives and created many challenges to overcome. Whether these challenges were financial, professional, pedagogical, personal or related to our mental health, we had to adapt to them, and we continue to change our daily lives hoping for a return to normalcy soon. These issues are even more important for people living with mental, intellectual or physical disabilities.
As a mother of two children on the autism spectrum, it’s been a daily challenge to find our new family routine. From getting the right mask, to understanding what’s allowed and what isn’t, and now figuring out full-time school at a distance (two different schools no less), and my unstable schedule, we’ve had our share of anxiety and setbacks. I wish I could tell you that things are great and that we’ve figured it all out, but every day there seems to be a new challenge. It hasn’t been easy, but through all the stress, the screaming and the tears (mine included), we’ve learned that we’re survivors, and that tomorrow brings new beginnings.
I try to include my kids in my work and advocacy so that they see the big picture when I can’t be there to fix the Wifi, or to reassure them that things will get better. I do my best to shield them from my own worries, and there are plenty of them, especially during the pandemic. I worry every day about how they’re going to survive school, about how their social and language skills are suffering, about how their mental health is at risk. Like all parents of special needs children, I worry about what happens if I get sick. I worry about the people I represent across the province, and the citizens of my riding. I worry that people living with handicaps or with autism, and their families, are forgotten or ignored as the government makes announcements about deconfinement or how they will deal with the second wave. Part of this worry evolved into outrage when I learned that the intensive care triage protocol (see link at the end of this article), quietly put in place by François Legault's government, discriminates against people who have a cognitive or intellectual impairment. Now that we are facing the second wave of the coronavirus, if the government doesn’t plan for it, we may be confronted with a shortage of beds and/or respirators. When faced with having to choose between two patients, individuals with Down syndrome, autism, or other cognitive and intellectual disabilities are at a disadvantage and may not be selected. Human rights apply to everyone, and you can count on me to ensure that the voice of those who are most vulnerable is heard loud and clear.
As the official opposition critic for people living with a disability or with autism, it’s my responsibility to be a spokesperson for our community. As a member of society, and as a parent of special needs children, it is my privilege.
To read the intensive care protocol, visit https://msss.gouv.qc.ca/professionnels/documents/coronavirus-2019-ncov/1-Protocole_national_triage_aux_Soins_intensifs-pandemie.pdf
Jennifer Maccarone is the Quebec Liberal Party MNA for Westmount-Saint-Louis and opposition critic for people living with a disability or with autism.