Tuesday, 11 December 2018
featured Healthcare Inclusion

Paul Vienneau: Some progress for people with disabilities, and a long way to go

Paul Vienneau (Facebook)

KJIPUKTUK (Halifax) – Today, December 3rd, is the international day for persons with a disability.

One day a year amounts to a nice gesture, but I hope is it is an IOU to the future, a time when disabled people will be as non-remarkable as any other citizen, when our requirements aren’t called special needs, but simply, needs.

There has been progress.

Two years ago Bill 59 signalled a new openness, a willingness by municipal and provincial governments to work with us as partners. After years of patronizing treatment by all levels of government, things started to change for the better.

In this city I see municipal government at times leveraging disabled citizens as resources, as partners on the path to a more inclusive and accessible society.

Personally, I have built relationships with Mayor Mike Savage, councillors, heads of Transit, Public Works, Winter Works, staff, and others, and have been able to help out with suggestions and informal consultations. I know they want to make Halifax a better city for all of us.

But more change is needed.

I often hear councillors speak of how they need to view issues through a “disability lens.” This means that disabled citizens get involved, that we get to hold the lens. Let’s face it, from straws to drive through bans, the able-bodied love to tell disabled people what they can do without.

When our group, the Bill 59 Community Coalition, first addressed the Province’s Law Amendments Committee in November two years ago, we gave them hell for allowing a mere day and a half for concerned disabled citizens to arrange transportation, in order to address a bill that sought, among other things, to address our inability to plan trips reliably on our own terms.

Many people in the disabled community require a week or more to arrange a ride to a grocery store, but for this very important issue they were given a day and a half notice.

My first statement to Law Amendments was to point out how anti-democratic this process was. I was pleased that no angry faces looked back at me from the committee table. They took what we said to heart.

When we returned the next spring the process was much better. We had the CART System, a remote transcription service in place, ASL interpreters, and our time was spent much more efficiently and an incredible amount of work was done.

Bill 59 is our bill of rights for the deaf and disabled citizens of Nova Scotia. For the first time, members of our community were invited to fully participate in designing the bill, a sign that the government and disabled citizens were going to work together, from that day on, to make things better.

I am concerned, though, that after the triumph of Bill 59, we have drifted back into complacency again. I worry that we will miss this opportunity to make an evolutionary step forward.

For instance, this year I have read many stories about efforts to get developers to include affordable housing in their projects. Nowhere have I seen the word accessible in these conversations, even though poverty and disability often go hand in hand.

Nova Scotia has the fastest-growing disabled population in Canada. If you live long enough, inevitably you will become disabled in one way or another, sometimes for the rest of your life, and at other times for a shorter period, through surgery, back or knee problems, and so on.

Nonetheless, developers get away with not including accessible units in their projects.

Take the development going into the old Ben’s Bread location on Quinpool Road. The developer promised he would include affordable units in future developments, but not a peep about accessible units.

The Quinpool Road area is a wheelchair user’s dream- flat roads with many accessible buildings and businesses. With some infrastructure works it would be a Shangri La for all disabled folks. We could build it as a model accessible neighbourhood that every citizen could thrive in.

Another example.

We have a crisis in long term care homes, with disabled people injured and dying from pressure sores. Left untreated, the sores lead to necrotic tissue, sepsis, and possibly death from septic shock.

Preventative measures include turning the patient in bed while they sleep, ensuring the wheelchair user does not sit for too long without breaks, and vigilant checking of the skin.

Pressure sore injuries are a disability issue. When someone becomes older, they become disabled by age. Given enough time, we all become disabled.

I have a personal connection to this issue, in that I know the sister of one of the disabled women who passed away from her sore. I remember hearing stories from that sister, told with such love and gratitude for her disabled sister. A sister entrusted into the care of the system, dead from an easily-prevented injury. Heart breaking.

Or yet another example.

We’ve heard of people with disabilities warehoused in senior care homes.

I lived in such a place for over three years after my two year hospital stay in the early 90s. For a 24 year old newly-injured young person it was difficult to be in an institution where the vast majority of “clients” were elderly, physically/intellectually disabled people.

Don’t get me wrong, I loved the wonderful old people I shared a home with. But this was simply not the right place for me to be. It was as if every week another resident would pass away, and that affected me greatly. I am still dealing with many of the things that I had to go through living there, and in that neighbourhood which made us feel unwelcome.

Disabled people should be living in the community, in homes where they are able to hire and self-direct their own attendant care. The government should pay for this. The ongoing social cost of segregating an entire class of people is so much more than the cost of enabling them to live the kinds of lives able-bodied people take for granted.

Keeping us in inappropriate places is a remnant of the old days, when we were stockpiled like old firewood, biding our time until we died. The time has come for Nova Scotia to follow through on the promise of Bill 59.

Politicians and bureaucrats promise “an accessible Nova Scotia by 2030”. With the greatest respect, this is an empty slogan. A better one would be “tomorrow morning we start the work to become a more accessible province.”

Accessibility is a process, a journey that will continue forever.

It’s as if the government thinks the work is done now. But change doesn’t come from from legislation. The legislation is merely the starting point.

I have much affection for our elected representatives. Many have become genuine friends over the last four years or so since my advocacy became a big part of my life.

It’s in this spirit of affection that I ask, where are your priorities?

While everyone is fired up over a stadium and a P3 hospital, we’re still waiting.

Instead, we should seize the momentum of Bill 59, and create conditions that facilitate success and inclusion. We disabled people need to get involved and self-advocate. Sitting back and waiting for things to change results in disappointment.

I say, don’t just be the change, start the change.

See also: It’s time to build affordable and inclusive neighborhoods

 


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