Nothing About Us Without Us – Building back better (fourth in a series)

The recent Throne Speech promised a Canadian Disability Benefit. This makes Canada the first country in the world to commit to ending poverty for its disabled citizens. It’s an historic investment in their financial well being. If properly designed the proposed Benefit will have the same impact as the Guaranteed Income Supplement, which ended poverty for seniors when it was introduced. The disability community is uniting to make sure the Benefit is fair and inclusive. Their campaign is worth following for those interested in learning how to build back a better long term care system, secure Universal Basic Income and resolve other social and environmental challenges.

My co-author on this post is Rabia Khedr, a leading disability advocate and human rights champion.

The phrase “Nothing about us without us” has its origins in political movements going back to Poland in the 1500s. It’s been a rallying cry for democracy ever since. Think, for example, of the slogan “no taxation without representation.” In the 1990s “Nothing about us…” was resurrected by disability activists who were tired of being excluded from decisions that affected them. It has fueled the disability movement ever since. And been adopted by hospital patients, Indigenous people, and people with dementia.

There’s a catch though. No one likes to be included as a favour or token gesture. That type of inclusion is fragile, easily eroded and far too dependent on the grudging goodwill and changing priorities of people in power. Too often “Nothing about us…” is used by the status quo to preserve the status quo.

Increased representation in decision making is always claimed. Never granted. Power is a habit. And those that have it don’t like giving it up whether they are conscious of their resistance or not.

Covid has knocked the traditional policy-making process off balance. It has exposed flaws in our institutions so fundamental that nothing short of transformational change will do.

Which means we must transform how we make change.

Instead of advocating for a place at someone else’s table we can create our own. We can welcome diverse voices and allies, settle our disagreements, create the agenda, and invite government officials to join with us.

In terms of the Canadian Disability Benefit, “Nothing about us without us” means: 

1. Taking overall responsibility for getting the job done
2. Preparing our diverse movement for success
3. Designing the benefit in equal partnership with the federal government
4. Achieving consensus on key features and resolving any contentious issues among ourselves
5. Enlisting our artists to create language, symbols, and images that touch hearts and open minds
6. Galvanizing public support by aligning with powerful groups, doing our own polling, and recruiting celebrities and high profile champions
7. Dealing directly with Ministers, Senators, Premiers and the Prime Minister’s Office (PMO)
8. Ensuring all party, non-partisan support at the national, provincial and territorial level
9. Combining our storytellers, thought leaders and their followers to create a Disability Media that rivals mainstream outlets
10. Securing independent funds to mobilize our moral, social, cultural, artistic and economic power.

Let’s fashion our own liberation story. We have more power than we realize so let’s claim it. And not let the boundaries of that power be defined by others.

NOTE:  To learn more sign up for our four-part webinar series “Building Momentum for the Canadian Disability Benefit” beginning November 5th. We’ve assembled four world class experts to learn from, Peter Macleod, Jutta Treviranus, Delyse Sylvester and Adam Kahane.

Rabia Khedr is co-hosting this series with Jonathan Marchand who lived in a makeshift cage outside the Quebec National Assembly in August to protest being forced to live in a long term care facility.