Liberation or confinement: People with disabilities have a right to manage their own lives

Helen Roulette wants to manage her own care.

The Manitoban, who lives with cerebral palsy, has asked for independent living hiring her own caregivers and choosing her own home.

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Instead, the Manitoba government wants to cut her current 24-hour care to 35 hours per week, forcing her out of her current apartment and into a group home.

Some say her demands are about rights and justice. Others say they would waste taxpayers' dollars.

Rod Lauder, the advocacy co-ordinator for Inclusion Winnipeg, told CBC Manitoba the situation is about saving money.

He's probably right, but maybe it is also about 19th-century beliefs guiding government spending. Under such thinking, life with disability automatically means dependency and is, therefore, worth less than other people's lives.

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Sadly, those least able to fight back, particularly those bucking stereotypes, make the easiest targets for those beliefs.

The independent living model includes self-managed home care (now called self and family managed home care), a program that bucks assistance stereotypes. Designed by people with disabilities, it came to Manitoba in the 1980s. It allows people to choose their own homes, their own caregivers, and manage their own budgets.

Lauder's view that the government is trying to save money by refusing access to these programs is supported by the government's behaviour.

In the last six years, successive Manitoba governments have refused to increase salary allocations for self-management staff, putting self-managers at a disadvantage in competing for workers.

Services for people with disabilities seem to be among the first to feel the cutbacks.

I doubt those protesting public spending on disability services cry as loudly about publicly funded services they use: roads, education, stadiums and arenas

I doubt those protesting public spending on disability services cry as loudly about publicly funded services they use: roads, education, stadiums and arenas.

Wouldn't they demonstrate in the streets if they faced an intrusive personal assessment for every tax dollar spent on them? If remote strangers dared decide when they sleep, eat, take a bath, go to the toilet, or where they live and with whom, and who touches their bodies?

That is the kind of life the Manitoba government envisions for Helen Roulette.

Too many remain blind to opportunities identified by someone like Rich Donovan, creator of the Return on Disability Group and the RoD Index. He "has spent more than 10 years focused on defining and unlocking the economic value of the disability market," as the group's website says.

His research found that the world market of people with disabilities rivals the size of China. They and their families and friends control $8 trillion in annual disposable income, the Return on Disability Group says.

People with disabilities pay taxes like everyone else, if they are fortunate enough to have an income large enough to warrant taxation. Some too few have jobs. The RoD Index has found that employees with disabilities are assets, not charity.

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U.S. and Canadian businesses are listening to this growing market.

The Manitoba government clearly is not listening.

It treats people with disabilities only as a liability, not an asset. The result is discrimination based on double standards, assuming that what Lauder calls "a good life" for most is unrealistic for people with disabilities and a waste of precious resources.

Is independent living an unrealistic, demanding expectation?

Independent living doesn't mean living unassisted nobody is totally independent and all people, regardless of their intelligence, need more than physical care. They need activity, novelty, challenge, a sense of purpose and meaning, a sense of belonging.

Independent living means living an adult life, making decisions (choices) within a community of one's own choosing, and contributing to that community according to one's abilities. It means being a part of life, not apart from it.

Controlling behaviour

It's the kind of life the Manitoba government is denying Helen Roulette.

Dependency, such as Roulette's, brings out the best and the worst in people. Some respond by collaborating with dependent persons so they can achieve their greatest potential. Others try to maintain or even increase the dependency.

In The Prince, Niccolo Machiavelli's how-to handbook on domination, he advised that "a wise prince will seek means by which his subjects will always have need of his governance, and then they will always be faithful to him." In other words, his power relies on his subjects' dependency.

Controlling behaviour by authority figures, such as caregivers, carries an implied threat of punishment for resistance. Many people with disabilities experience such domination but fear retribution, such as loss of services, if they dare speak out.

Systems, even those designed for the most benevolent purposes, such as home care and long-term care facilities, can lead members of that system to harm recipients, to behave as Machiavelli advised. The only antidotes to such harm are awareness, vigilance and self-management, with or without support.

Roulette has already demonstrated her ability to direct her own care. For some people, group homes are liberating, but for people like her, they are confining.

The Manitoba government and taxpayers have a choice: help liberate her or confine her.

If we choose the latter, what does that say about us and our elected leaders?

This column is part of CBC's Opinion section. For more information about this section, please read this editor's blog and our FAQ.

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