I am part of an invisible demographic. Yet, strangely, my son and I can’t leave the house without feeling noticed everywhere we go.
My seven-year-old son is defined in the medical world as a child with medical complexity. He is non-verbal yet his smile will speak to you loudly. He is charming and silly, sensitive and loving.
My son feels like my personal disruptor as well as my saviour from a life less lived.
He has introduced me to a world of love and beauty as well as one of discrimination and injustice. He is disabled. Disabled by a world that is not designed for him and at times feels like it is actively trying to oppress and dismiss him.
Let me share a bit of this with you. Despite the privilege I inherently have, I find myself struggling to provide for our basic needs, and I am not alone. Thousands of families like mine across this country struggle every single day.
Disability poverty starts at birth for many kids in our country, but I recognize that this may be a surprise to you. It likely wasn’t on your radar.
Families like mine are caught in a constant juxtaposition. We strive to save and plan for our children’s lives well beyond the age of 19 as they will always be fully dependent and will need 24/7 assistance for their daily needs. In the same moment, we brace ourselves with the knowledge that they may not live to their next birthday. We routinely grieve alongside other parents and friends who have lost their children at very young ages.
Our kids certainly have a way of keeping it real and raw.
We live in a country and a society that is paying a lot of lip service these days to inclusion, diversity and disability equity yet we are consistently left behind in the area of actual, tangible supports for our kids’ needs.
Our fellow Canadians assume that we are “covered” for our kids’ needs. But we are not.
Did you know that most families in Canada routinely need to pay substantially out-of-pocket for basic medical equipment like wheelchairs and walkers? The financial burdens we bear are intense including big ticket items like home and vehicle adaptations.
Another thing you may not realize is that families like mine don’t have access to income support that recognizes the 24/7 demands of our kids’ care and the barriers to employment that this creates.
The federal Child Disability Benefit is only around $240 per month and only for families with the lowest of low incomes in Canada. Although this benefit was slated to be doubled and was held up as a platform promise by the Liberals in the last election, we are still waiting.
The federal Liberals also promised a Canada Disability Benefit and recently tabled legislation to turn the promise into a reality, but the bill was largely a symbolic gesture, since Parliament recessed shortly thereafter and then an election was called.
Promises, best intentions and symbolic gestures aren’t good enough. And disability needs rise above partisan politics. Families like mine need support now.
Our country has a lot of work to do and that is why I am sharing this with you. Most Canadians believe in the value of disability inclusion. Let’s make sure our political candidates do too.
Actually, these are more than values. These are rights embedded in the UN Convention on the Rights of Children and the UN Convention on the Rights of Persons with Disabilities. But that alone doesn’t make it so.
We need you to step up as allies. We need our elected officials to step up.
As a solo mom, I worry deeply about the future for my son and so have stepped up to put my energy into the collective voice for change. I was honoured to join the Leadership Team of the grassroots group Disability Without Poverty.
Our vision? We want people living with disabilities to be prosperous, realize their power, pursue their passions and participate in every aspect of society.
This movement needs all Canadians to care. Ask your political candidates what concrete actions and policies they will put forward specific to those with disabilities.
Canada must build back much, much better. And that must include persons with disabilities and their families.
Photo courtesy of author
