This article was written by Brenda Lenahan, and originally appeared in DABC’s Transition magazine on Disability Justice (Spring 2022). Read the issue here.

If you’re interested in contributing to Transition as an individual or an organization, please email transition@disabilityalliancebc.org.
_______________________________________________________________________

I am part of an invisible demographic. Yet, 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 loudly to you. 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. Families like mine live with a painful 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 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, the financial burdens we bear are intense.

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 limited to families with the lowest incomes in Canada. Although this benefit was slated in 2019 to be doubled, we are still waiting.

The federal Liberals have put forward a plan to bring $10 a day child care to all Canadians. Why not plant disabled children’s needs at the forefront of policy discussions to ensure that this plan will truly be inclusive and equitable?

Let’s also hope the promised Canada Disability Benefit for working age Canadians with disabilities becomes a reality.

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 Disability Without Poverty.

This movement needs all Canadians to care. Ask your local MP what concrete actions and policies they will put forward specific to children with disabilities.

We are on the doorstep of an extraordinary opportunity.

Building back with human rights as our guide, is the only chance we have to ensure that social equity is in our future.

For more information on this movement and ways to support it, see: https://www.disabilitywithoutpoverty.ca.

To find contact information for your MLA, see https://www.leg.bc.ca/learn-about-us/members/.

Brenda Lenahan and her son live on the west coast of Vancouver Island. She is the founder of BC Complex Kids and advocates for access to equitable supports for kids with medical complexity.