By Jayne Melville Whyte

A life with disability should not mean a life in poverty.  Unfortunately, that’s the reality for too many persons with disabilities in Canada.  I should know.  I’ve lived with challenging mental health conditions for several decades, and while I’ve had periods of work, I’ve also had long periods of hospitalization, and I’ve relied on government benefits to eat, for shelter, to survive.  I eked out funds from casual contract work when I was well enough and depended on gifts from friends in hard times.

But persons with disabilities should do more than ‘just survive.’  We want to contribute as creative and caring members of the community.

The 2021 federal government budget announced consultations for a new national Canadian Disability Benefit to ensure people with disabilities have a basic income.  This is ground-breaking news, at long last, and something to be celebrated.  Now the hard work comes — making it happen.  Persons with lived experiences should be at the table, working alongside government at every stage of the creation of this new benefit, to make sure it’s done in a way that helps those it is intended to.  The popular mantra, “Nothing about us without us,” is not just about engagement, it’s about making the benefit the best it can be.

People who live with disability and poverty bring an essential perspective to planning.  Our perspectives are unique. A story from my past is a reminder of how easy it is for those who’ve never known poverty to be oblivious to its constant piercing presence in every decision and action a person makes.

In 1993, after repeated hospitalizations and divorce, I found myself relying on benefits for survival. My total cheque was $864 per month for rent and living expenses.  A psychiatric bed cost (at that time) about $1000 per day.  Every day I was not in hospital saved the government money but left me in a state of poverty that prevented healthy living.

In 1994, Senate committee hearings were underway about changes in the now defunct cost-sharing scheme for social programs, the Canada Assistance Plan.  Two national mental health organizations asked me, a woman on social assistance, to make their presentation. The plane from Regina to Winnipeg did not connect as planned with the Ottawa flight. The Senate committee waited until 9:30pm to hear my presentation.

Before I began the carefully worded speech, I apologized, “I never even thought of coming a day early.  The hotel room costs more per night than I am allowed for a whole month of food and other needs after my rent.”

A Senator responded, “I never even think about the hotel cost.…a whole month?” “Yes,” I responded, “for food, toothpaste, recreation, transportation, gifts for my family….” He shook my hand and shook his head, and I went to the luxury (for me) of a prepaid hotel room for the night.

Ten years later, I worked casual contracts with non-profit organizations, never earning enough to pay income tax; no use applying for the non-refundable federal Disability Tax Credit.  At another national planning meeting, I realized the stark income difference of participants when my new friend mentioned over her glass of wine, “When I worked as Deputy Minister….”   I valued her experience as a person with mental illness who also understands government processes.  But I’m not sure she valued my poverty experience while brainstorming support systems.

In 2014, mental health conference expenses were paid by agencies who invited me to participate: $400 for airfare; $800 for four nights at the hotel, plus meals and taxi.  Five days of conferencing cost more than my monthly benefit.  Some participants were professors at universities — not “rich” but not poor.  Other participants were in deep poverty because of disability and unemployment or underemployment, grateful for the lunch at the meeting as their one meal of the day, worrying that they’d be homeless if their depression kept them from work for another month.  Together we documented the failure of community services to meet the needs of people with disabilities.

People with disabilities living in poverty offer a perspective essential when planning social programs and income supports.  We should be at every government table in every phase of planning and delivery. Any solution must involve the people who are most affected, the population the program serves.

The Canadian Disability Benefit is too important to leave solely to government.

Jayne Melville Whyte is a member of the leadership team of Disability Without Poverty. She lives in seniors’ subsidized housing in Regina, Saskatchewan.