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Al Etmanski, who has spent decades advocating for disabled people's rights to housing, livelihoods and autonomy, now has a major part to play in crafting the Canadian Disability Benefit. If implemented, it would make Canada the first country to guarantee disabled people an income above the poverty line.Supplied

More belowAl Etmanski on The Decibel

This is part of the Difference Makers, which highlights some of the people working to make Canada a better place in 2022.

The paradox of being Al Etmanski as he approaches the end of a long and inventive career as an advocate for the disabled can be stated as follows: He doesn’t want anyone to write about his accomplishments because he feels it is no longer appropriate for non-disabled people to lead the world of disability. This is because people with disabilities now direct so many aspects of disabled life – in many cases because Al Etmanski laid the groundwork for them to do so.

Or, to put it another way: There is a fair chance (if you are an optimist) that in the next session of Parliament, Canada will make global history and become the first country to guarantee an annual income above the poverty line for individuals with disabilities. You won’t hear Mr. Etmanski claim any glory. But all the tracks lead back to you-know-who.

Last June, Carla Qualtrough – the former Paralympian who bears the ungainly title of federal minister of employment, workforce development and disability inclusion (she also happens to be blind) – tabled Bill-C35, The Canadian Disability Benefit. The benefit is intended to “reduce poverty and support the financial security of persons with disabilities.”

Of the six million Canadians who live with a disability, roughly 850,000 of working age exist below the poverty line. This means they make (if they live in Toronto) less than $2,028 a month – and sometimes a lot less: an Ontarian who can’t work because of a serious disability might receive a maximum of $1100 a month from Ontario’s Disability Support Program. That’s a monthly shortfall of $1500. “And it costs 40 per cent more to live as a disabled person,” says Michelle Hewitt, the co-chair of Disability Without Poverty, another public-policy group Mr. Etmanski kicked off. Ms. Hewitt has MS. “If you need a power wheelchair,” she points out, “it’s $20,000.”

Since Ottawa’s announcement last summer, Disability Without Poverty and the government’s COVID-19 disability advisory board (which Mr. Etmanski also co-chaired with Ms. Qualtrough) have been toiling to hammer out the program’s details. This month, Prime Minister Justin Trudeau repeated his support for the benefit, which could easily cost $10-billion. That number is sure to raise hackles, but evidently doesn’t trouble most Canadians: an Angus Reid poll last June found that 89 per cent of us approve of the move.

But whether the supplement will become a reality is anyone’s guess. It wasn’t even mentioned in the Throne Speech this fall. This is the disabled, remember, the most consistently neglected and mistreated of all needy people, across centuries of history. Will it ever come to pass? No one else is as optimistic as Al Etmanski. They tend not to have his staying power.

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Cabinet minister Carla Qualtrough, shown at October's swearing-in with Prime Minister Justin Trudeau and Governor-General Mary Simon, tabled the legislation to create a Canadian Disability Benefit. She and Mr. Etmanski were co-chairs of the federal COVID-19 disability advisory board.BLAIR GABLE/POOL/AFP via Getty Images

Mr. Etmanski has long believed that if we completely integrate disabled people into our lives and our thinking, as just another steady presence in everyday life, we‘ll have a more serious chance of overcoming our innate, collective fear of them – of their appearance, of their infirmities, of their unfillable need, of what they portend for all of us. He seems to be one of those chastening types who was always drawn to helping others.

He grew up in multiple small towns in Northern Ontario (his father was “an OPP”) before heading off to the University of Toronto to study history. He eventually ended up in Vancouver, brought in to wipe out vandalism in social housing projects. “I ended up hiring the people who were the so-called vandals,” Mr. Etmanski says. In the process he helped open Vancouver’s housing projects to people with disabilities, creating the first barrier-free communities in B.C. By 1978, he had another, more personal reason to take on their plight: his daughter Liz was born with Down syndrome.

Mr. Etmanski’s move into social housing coincided with the B.C. government’s desire to save money by closing its large, provincially funded institutions for the disabled. This was the shocking era when a day’s activity in a big institution often consisted of a shower followed by hours of staring into space on a foam mat in a large crowded room. Mr. Etmanski went to work for the BC Association for the Mentally Retarded (later the Provincial Association for the Mentally Handicapped, now BC Inclusion – nomenclature has been one of his ongoing causes) and eagerly led the exodus of the inmates into local communities. B.C. was ahead of other provinces, and still is: More than 10,000 young people with disabilities live in long-term care homes across the country, Mr. Etmanski says, “because there’s no other place for them.”

He expected the communities to object, but they didn’t. “The most remarkable thing I learned,” Mr. Etmanski remembers, “was that if you gave the public a chance to evaluate the issue, you were pleasantly surprised.” Suddenly, the fearsome characters who had been locked out of sight proved “capable of loving another human being, of enjoying music, of having all kinds of capabilities the system dismissed. Because the system just took it as a given that if you were disabled, that was it, you were in some way non-human.”

He was beginning to understand how to change the bigger social picture via the individual details of peoples’ lives – an insight encouraged when he met John McKnight, his long-time mentor and role model. A decade earlier, Mr. McKnight had founded the Asset Based Community Development Institute, a Chicago-centred group of non-conformist urban renewal keeners who tried to rebuild communities on the basis of their strengths, rather than their deficiencies. Its most famous graduate is Michelle Obama.

“The whole idea is that all of us are a bundle of emptiness and wholeness,” Mr. Etmanski says today. “And the difference between a lot of people and people who have been marginalized or labelled in some way, is that some people – people like you and me – get to ignore the empty part of us in favour of our gifts. And so the real job is to convince people who work with labelled people to stop focusing on the half-empty and focus on the half full.” His stated goal is nothing short of “refreshing the so-called social contract.”

Mr. Etmanski found himself increasingly surrounded by parents who had been dependent on government funding for the welfare of their (exceptionally expensive) children; they wanted more say in the fate of their kids, in the quality of their lives, in how the money was spent. Back then – the late 1980s – ”nobody anywhere in the world was doing anything to respond to a changing demographic, which is that for the first time in history, people with disabilities were outliving their parents.” So Mr. Etmanski and his partner, Vickie Cammack, founded the Planned Lifetime Advocacy Network (PLAN) to create human webs, “care networks for people with disabilities that could then manage the affairs and care of disabled children after their parents were gone.” Forty communities around the world have adopted its precepts.

But to be a more independent advocate for the disabled, Mr. Etmanski had to loosen his own dependence on government money. He became a “social entrepreneur.” He raised money, persuaded credit unions to open their doors to parents of disabled children (and their savings), held auctions, raised more money, wrote books (including The Power of Disability, his latest).

“I feel like the history of disability is full of individuals with disabilities and their families taking what they can get, even though it’s not what they want. Contrast that with the high-tech industry or the cellphone industry, where they’re investing all the time in new technologies, making mistakes in order to learn to change things.”

Having demonstrated that people with disabilities and their parents could be something other than snivellingly grateful recipients of governmental largesse, Mr. Etmanski set out to prove an even more radical contention – that those same people could manage the funds granted to them more effectively than government-approved service providers. The result was the Registered Disability Savings Plan (RDSP), an RRSP to protect, tax-free, the savings of the disabled and their wards. “We could just see that people with disabilities were in poverty. But we also rethought disability, to be more than just receiving a program or a service from government or a service provider. Being disabled was about being surrounded by family and friends, about having a sense of belonging and enough money that you weren’t getting poorer.”

A disabled person with money of their own! Disability as a proud way of life, rather than a badge of permanent second-class humanity! After 12 years lobbying for the RDSP, Mr. Etmanski had effected an enormous change in the self-reliance of people with disabilities. The outside world barely noticed. But even disability advocates were slow to understand what had happened.

Today, more than $6-billion is under management in RDSPs across Canada. Six-billion sounds like a lot of money – a genuine tribute to the frugality and creative financing for which many families of disabled people are known. But only a quarter of Canadians eligible for RDSPs have one (and qualifying is not easy). “People don’t know about it,” Mr. Etmanski says. “But a bigger part is that people don’t have the money to put aside for it.”

That fact has rattled around in Al Etmanski’s brain for a decade as he asked himself – ever the ambitious community organizer – how he could lever the RDSP into something bigger.

Then COVID-19 struck. The fault lines baked into the disability apparatus were exposed. Many people with disabilities were trapped in ever-more-deadly residences for months on end. Mr. Etmanski seized the moment of public awareness to create Disability Without Poverty, a new voice for the cause. He relentlessly cajoled Ms. Hewitt and her co-chair, Luca Patuelli, a professional dancer and choreographer whose legs are compromised by arthrogryposis, to co-chair the group, 14 of whose 17 members are people with disabilities. Meanwhile Ms. Qualtrough carries the ball in cabinet, reminding her able-bodied colleagues that there is more than one way to define a successful life.

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Luca Patuelli, co-chair of Disability Without Poverty, does one of his signature dance moves at his home in Boucherville, Que.Christinne Muschi/The Globe and Mail

None of this enthusiasm, even Mr. Etmanski’s rust-proof variety, guarantees the disability income benefit will ever be anything more than “aspirational,” to use Ms. Hewitt’s word. Two big challenges lie in its way. The first is who qualifies as disabled: There’s no set federal definition, and each province has its own ideas. Does temporary disability count? Does mental illness qualify? You can hear the trolls rumbling into action even as you read.

The second sticky question is, how much of a top-up do people get? It costs more to live in Vancouver than it does in Calgary or Toronto, but those are only the three most expensive (and best-serviced) places for a disabled person to live.

Then there’s the spectre that terrifies even the leaders of Disability Without Poverty – the prospect of the benefit going through, only to be clawed back by provincial governments reducing other funds and services, as if there were a fixed and unchangeable level of support a disabled person deserves.

What the disability benefit’s champions hope to establish, in other words, is a state of mind – one that doesn’t see those with disabilities as lesser human beings because they were unlucky enough to have suffered blows inflicted, through no fault of their own, by amoral fate. “A disability is an unasked-for development that impacts your ability to work in the world,” the University of Calgary’s Lindsay Tedds, who studies the economics of disability, points out. So how do we let them live with dignity, and then let them contribute if they can?”

That’s a radical ask, but it isn’t a new one. When Luca Patuelli’s daughter Luna was diagnosed in utero with her father’s condition, four months into his wife’s pregnancy, the first question the doctors asked was whether the couple wanted to abort. “The fact that it’s still an option is incredible,” Mr. Patuelli says. In his mind, the new benefit will let more people with disabilities find more ways to contribute their talents, however subtle or unpredictable those talents might be.

Al Etmanski, the realist’s realist, has been trying all his professional life to organize a community in which that can happen. If the disability benefit survives the gauntlet of competing demands and threats we call Parliament, if it creates a permanently equitable starting point for people with disabilities, Canada can call itself the leading country to do so. That will also make us the first country to openly imagine a great possibility – a place in which the disabled are no different from anyone else by virtue of the fact that our dreams are the same.

Read more about some of the people working to make Canada a better place in 2022 ⋅ Lisa BarrettSarah LazarovicMaayan ZivAshif MawjiRobert WrightMark Shieh

Bonus podcast: Al Etmanski on The Decibel

On The Globe and Mail’s news podcast, Al Etmanski speaks with feature writer Ian Brown about the Canadian Disability Benefit and why poverty among disabled people has been ignored for so long. Subscribe for more episodes.

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