I want you to imagine this:
“It is just a few years from today, and the last years have seen a lot of change for persons with disabilities and their families in Canada. We have a new Canadian Disabilities Act, our government has signed the UN Protocol to Safeguard the Rights of Persons with Disabilities, across the country there have been sweeping changes to disability benefits so no one is forced into a life of poverty, RDSP uptake is at an all time high, individuals are selecting their own supports and the annual disability pride parade attracts thousands of visitors to cities across the country every year. It is a new era for individuals with disabilities and their families.”
The Family Arm of the Disability Movement is the person we love with a disability and their parents, grandparents, sisters, brothers, cousins, caregivers, friends and neighbours. We, the family, have been an afterthought for too long, our opinions sidelines, our emotions trivialized, our needs prescribed and our resources shuttered. Enough.
Being visionary is not new to us. Alone or sometimes with other families, we worked to create visions and solve problems for our loved one with disabilities beyond the ones that we are given as an only choice. Families saw beyond the four walls of institutional living. We took risks and invested in new ideas; we created employment opportunities and built homes.
For a long time organizations made decisions for families based on what they had on offer, but the tides have turned. Organizations have very little to offer anyway, so they don’t have permission to tell us what our choices are. We have needs, we will tell them what they are, and if services cannot be offered to meet our needs, we will purchase those services elsewhere or innovate for other solutions.
As soon as we can, we will take the funding allocated for our loved one and make new choices. We will hire the right people for us and build a team around our family member with a disability. Good intentions and a charitable heart are not longer the only job requirements. The requirements are creativity and innovation in your work, delivering a high standard of work with dignity and respect. Organizations will measure the outcomes and performance of their employees in tangible ways and report back to us on progress. You, organizations and service works, need to know we are your employers, you are accountable to us and you serve us.
Poverty is not our baseline. Because our family member was born with or came into a disability it does not mean they deserve to be poor. Social assistance is not a gift; it is an entitlement like Old Age Security or Child Benefits. Disability benefits means a floor beneath from which family members can build themselves up to a better place. One day we will find a way to pool our collective billions in assets and resources and we will leverage it. Our financial decisions will shift the economy, markets will watch us.
If you doubt this vision I want to remind you that persons with disabilities and their families are the most creative and innovative people in our country, we craft, design and adapt daily. We are the ultimate life hackers. We are fed up and tired but our vision is clear.
Our family members with disabilities will be included, have choices and have full economic citizenship. We, the families, will use our creativity, determination and love to change the culture of living with a disability in Canada.