10days

I have been thinking a lot about my recent interview with Christine and have decided to write about it. Please read this brief post first. In previous interviews, each of the subjects has had the luxury and benefit of time. Their ‘coming to terms’ happened long ago, and now each of them are able to discuss the evolution of their focus from medical issues to

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christine

I interviewed Christine Kluczynski in her home earlier this summer. I hadn’t met her before and wasn’t familiar with her story or her blog – so I was not only keen to capture her story, I was keen to simply hear it!  I wasn’t disappointed – she’s a smart woman and dedicated mother, with enough ambition to match her big ideas. Christine is a relatively

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alley

Both boys were born when we lived on Pape Ave. It’s a very busy street north of Gerrard, but south of Gerrard it’s quiet, leafy and residential.  If you live in Toronto you know the neighbourhood as Leslieville.  (When I was living there, it hadn’t been branded yet – it was really just a stretch of streetcar stops along Queen, on the way to the

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131-3193_IMG

We’ve come a long way in recent years – the ‘patient voice’ has taken front stage as a source of guidance and inspiration for health care policy-makers, process engineers and designers.  Incorporating the needs of the patient is also at the center of ‘patient-centered care’ – an approach to care that seeks to account for the patient’s individual biography, culture and capacity. These intentions have

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Photo: Toronto Brigantine

When I was a teenager, I sailed on a tall ship every summer. Toronto Brigantine is a sail-training organization for youth and operates two vessels: T.S. Playfair and S.T.V. Pathfinder.  During the summer, the ships sail the Great Lakes with its seamen and crew, often sailing continuously through the night and arriving at port only to refuel and for brief shore leave.  During the winter

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marjorie-richards

Marjorie Richards was one of Owen’s caregivers. She worked with our family for several years off and on and was probably the most experienced of the group. What I remember most was that she was unflappable – nothing fazed her, she was always on time, she was always energetic and ready to go. She also wasn’t intrusive or irritating; she seemed to have figured out

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donnas family

I interviewed Donna Thomson a few months ago when she was in town for her book launch. I had so much footage by the end it was hard to decide what to put in the videos! I decided in the end that almost all of it needed to be published. I’m including one of the videos here, and you can see all three of Donna’s

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Slide2

I spoke last night at DesignMeets: an event for Toronto’s design community, hosted by my friends at Pivot. I was allowed 5 slides and 5 minutes! “I was what I call an ‘extreme’ caregiver for over 12 years, caring for my son who had multiple severe disabilities. Owen died about 4 years ago – since then, I’ve been writing and speaking about our experiences.

future

I just came back from the OACCAC‘s* annual conference – I was part of this illustrious panel: Dr. Tim Rutledge (CEO of North York General) Dr. Jonathan Kerr (Family physician and President of the Ontario Association of Family Physicians) Nadine Henningsen (President of the Canadian Home Care Association) Jennifer Johannesen (Patient and Caregiver Advocate) Moderator Jeffrey Simpson, National Affairs editor for the Globe & Mail

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singledad-blog

I met Single Dad (SD) a couple of weeks ago.  He’s the blogger behind the semi-eponymous Single Dad/Disabled Daughter. He was in town to visit a friend and agreed to be interviewed for my Conversation Library series.   SD has two adult children with severe disabilities – his daughter lives at home with him and his son, previously cared for by his ex-wife, now lives in a

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