Rob and I have worked hard to make sure that others see Shannon as an equal, that given her lifestyle and experiences that some might even be a little jealous. What we couldn’t control was how Shannon’s peers would treat her on a daily basis. What power did we have of creating a natural environment for Shannon to make friends and with all the equipment and staff attached to her, nothing about Shannon seemed open and available to invite friends into her life.

What we have found is that by modeling what we want for Shannon, for continuing to acknowledge her disability all the while sharing her abilities, Shannon has become just another high school student, one with peers, acquaintances and friends, just one of the 400+ grade 12 students trying to get through to the end, to Graduation, and all that comes with it.

Shannon has friends that take care of her just like they take care of their other friends. One day Shannon showed up at school with her hair a little less than its usual stylish way, Ennis, a fellow drama student, stepped in, pulled the elastic out of her hair and had it fixed up in no time, he didn’t ask he just knew it needed to be done.

Shannon has worn orthotics on her feet for years which meant she always wore big shoes that were difficult to put on and impossible for Shannon to kick off. Recently Shan’s orthopedic surgeon suggested she only needed to wear her orthotics when she was standing, out with the old, big shoes and in with the pretty, cute flats. One problem with the flats is that Shannon has figured out how to get them off by wedging them against her wheelchair, this can become a bit frustrating at times. One morning while Shannon was at her early morning Yearbook Club Shannon flipped her shoe off one too many times and the shoe came flying back at her. Shannon’s SEA wasn’t really sure how to take that, one of the others students in the class throwing Shannon’s shoe at her but I certainly knew how to react, with a smile!

It has always been my feeling that there is a level of politeness between people who see each other on a regular basis, people that haven’t really spent enough time getting to know each other but know enough to compliment one another and be polite. That is not where friends stay, this is where a friendship begins. To really know another person means that you can laugh not just with them but at them as well, in a way that includes mutual respect. I think of times my friends have laughed at me when I’ve spilled food on myself or tripped on the sidewalk, only good friends can get away with that. Which brings me back to the girl in Yearbook that threw the shoe at Shannon, it wasn’t a hard throw, more of a toss onto her lap and it was accompanied by, keep your shoes to yourself Shannon! Only a friend could get away with that behavior.

Yes, our daughter has peers, acquaintances, classmates and staff but she also has people in her circle that would gladly call her a friend and treat her with the same caring respect and sense of humour as they do with all their other friends. This is where we want our daughter and in this world the word ‘inclusion’ isn’t necessary!

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Yesterday was Mother’s Day in Canada.  My mother is a feisty 90 year old and right now she’s in an isolation bay at her local hospital.  C-Difficil, that scourge of modern health care facilities is the culprit.  My sister and I are tag-teaming staying with Mum and it’s all gloves and gowns.  Mum is mostly very upbeat and still demanding to go out for a smoke (goes well with peanut butter sandwiches and chocolate bars).

But yesterday, after wishing each other a very Happy Mother’s Day, a young doctor strode into our area.  Mum began to ask questions about her condition and he said, “I only have ten seconds to answer questions.”  Mum then asked what would happen if her symptoms didn’t get better soon and half-way through her question, the doctor began “nine….eight…..seven….”  Mum stopped speaking and the doctor left the room.

Last night at my sister’s dinner table, we were all chatting about my daughter Natalie and how her character demands a thoughtful approach to all that life puts in her path.  She is academic by nature and loves her area of contemporary material culture.  Natalie metaphorically turns things over in her hands until she understands them completely.  It’s a slow way of life and very contemplative.  Of course, Natalie can speed up at exam time or when she’s feeling the rush of ambition.  But it’s not her natural and preferred way of being – I love that about her.

Here is a portrait of Natalie painted by my sister Karen:

That doctor did not understand many things.  He did not understand respect for others, especially his elders.  Especially elders who happen to be ill.  He did not understand that people who are older, or have disabilities require time to ask and reflect.  He did not understand the slow movement.  He did not understand that is a very poor physician and that his approach is antithetical to healing.

People like my Natalie have much to teach us about reflection, thoughtfulness and the time it takes to have a conversation that is fulfilling or to discover the answers to “who are you and what are you feeling right now?”

Have a look at the Slow Movement: Making a Connection website – you will be glad you did, especially if you are giving or receiving care….. or, you just happen to be like Natalie.

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At a recent Public Policy Forum dinner honouring Canada’s six living former Prime Ministers, Joe Clark spoke about the critical talents required for a changing world. It is a world in which non – governmental organizations may have more power and influence than states themselves.  He cited these examples. Amnesty International has offices in 80 countries, more than most countries have embassies.  Only five multi – national companies in the world employ more people than Red Cross/Red Crescent. Greenpeace has more influence on public policy than most national governments.

Without using the phrase social innovation, he managed to describe the skills required to be an effective social innovator. And in a language that was personable and jargon free.  The first ninety seconds of his speech is worth viewing for his witty banter and a self deprecating story that had tears of laughter running down many of our faces.

Coming up with a new idea is hard. Proving that your idea works is even harder.  Tougher still is scaling and spreading your innovation so its benefits are received far and wide. The reason it is so tough – we must rely on others. Spreading far and wide means changing structures, institutional practices and policies, something we can’t do on our own.  We must work with friends and allies but equally, strangers and opponents.

Clark identified three sets of skills for this challenging stage of the social innovation journey.

Seek Common Purpose: “… the ability to respect and bridge conflicting identities and different values and patiently seek enough common ground to build trust, respect and then collaboration.”

Marry Mandate and Imagination: while non governmental organizations are imaginative inventing new instruments like micro-credit  “what they don’t have is the authority to change the rules…  Non state organizations often have the imagination which the world needs, but only states and governments have the mandate and power to change laws and regulations and obligations.”

Lead from beside: “As power disperses in the world so does the capacity to lead. And in almost every case the most effective leadership will have to be shared,” Clark said. “The model now should be leadership from beside.”

These skills Clark concluded, ” define a collaborative, respectful, innovative world..and speak to the most challenging issues of the future.

Here’s the U-tube of former Prime Minister Joe Clark’s complete speech. Wise words from one of our best.

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When we were living in England, I began to have an idea for a photographic campaign involving high fashion and aspirational images involving people with visible differences.  (It was an idea that I shopped around, but it never went anywhere).  I was already involved with supporting Canadian designers living in London and an article was written in Chatelaine Magazine about how my husband Jim and I connected Canada, fashion, and philanthropy.  Jim and I had organized a fashion show with Brown’s Boutique at our residence, involving 20 super models and 20 of the world’s best designers.  In an hour and a half, with the help of a Sotheby’s live auctioneer, we raised 100,000 pounds for Women for Women International – a charity that assists women recover from war through human rights training, skills acquisition and economic empowerment.  Women for Women works with our Canadian troops in Afghanistan to help women survivors of war there.  This is a photographic taken at our charity auction – I am shown wearing Canadian designer Erdem with my dear friend Joan Burstein, founder of the iconic Brown’s Boutique in London.

So, yesterday, when a friend of my daughter Natalie’s sent me a facebook link to a TED talk on the photographic beauty of children with disabilities, I was riveted.  Rick Guidotti is a Vogue and Elle fashion photographer with a huge body of art and couture work under his belt.  He is used to taking pictures of the world’s most gorgeous women wearing the world’s most beautiful clothes.  But, one day in Manhattan, he glimpsed another kind of beauty on the street.  A girl getting onto a bus had long white hair, very pale skin and blue eyes.  Later, after researching, he discovered that this mystery girl had albinism, or the absence of pigmentation in her hair and skin.  In his TED talk, Guidotti tells the fascinating and inspirational story of finding and photographing that girl from the bus stop as well as hundreds of others from around the world including Africa where albino children are sometimes murdered as witches.

But Guidotti did not stop at albinism in his search for beauty in diversity.  He has done photographic projects with all sorts of children with physical differences.  I urge you to watch his presentation.

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I posted my first story on Tyze 463 days ago!!  It was the “sort of end” to the long process of adopting my first child, Leo.

My son Leo was born in Florida on January 24th, 2011. I was heading down to Florida for his birth the day before and was feeling pretty overwhelmed and excited.  A very good friend of mine, Cindy, offered me a network called Tyze.  She told me I’d be able to connect with my family and friends with one email instead of many.  “Cool,” I thought, “sign me up!”

Lots of people wanted to know what was happening—where I was and how things were going with this new babe.  I was pretty sure I’d be really busy being a new mom and the idea of creating and recreating emails to let people know what was happening was a bit daunting.  So, the “Mary’s Going to Be A Mom” Tyze website was born.

What a godsend it was!!  I posted pictures and short stories to let everyone in my network know what was happening as often as I liked.  It was really easy to use and took very little time.  Everyone knew when he was born and saw pictures instantly—people knew how we were doing and was happening as we waited for Leo’s birth mom to sign off on his papers. It only took one Tyze message to let everyone know when we were finally on our way home.

On the Tyze network, my friends and family had an opportunity to comment and send us well wishes.  It felt like one big love fest!!!  Everyone was so happy for us and excited to meet Leo.

What I also loved about my network was that I was able to record everything that was happening. I can now look back to that first story and all over again feel the emotions of meeting Leo. I love that this information and history will stay available to me and to Leo too as he grows up, almost like a priceless digital scrapbook.

I’ve now started to send out stories and pictures of Leo as he grows up. Whether my family and friends see Leo often or not they still feel connected to us through pictures of him and stories about the milestones he reaches. In a sense, our network will all know him as a little boy and what he is like through the years. If anything ever happened to me others would know of his life and who is he his.  I really love this aspect.

It’s also really important to me that our story is private. I don’t really want to post pictures of Leo on other sites.  We have a big network but it’s secure and only for Leo’s members.  I don’t have to worry about his picture turning up randomly on the Internet, that doesn’t appeal to me.

So, our network is now called “Leo’s Den”.  All the members love being apart of this online community and I love that everyone in it will know and love Leo as much as I do.

Mary

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These themes speak to the heart of our family life and what nursing means to Nicholas’ wellbeing.  Nick could not survive without nurses.  Each evening at 8pm, a nurse arrives in his room.  Nick’s greatest medical needs are at night – once asleep, he often stops breathing because of central and obstructive apnea.  When this happens, an alarm sounds on his oxygen monitor and the nurse will reposition Nick or stimulate his face to restart his respiration.  The nurses give medications via Nick’s stomach tube, they take care of his incontinence needs, and they keep him comfortable by frequently repositioning him in bed.  Nicholas’ nurses make careful and copious notes about his hour by hour pain levels as well as his respiration and they monitor his vital signs especially if he is unwell.

But this is not all the nurses do.  At 8pm, Nicholas is awake and usually watching television.  He might be  cheering for his team in the Stanley Cup ice hockey finals, or watching re-runs of his Liverpool Football Club in action back in the UK.  Ask Jen, Tiffany, Karen, Crystal, Patricia or any of his nurses – they all know team scores, best players and how to trouble-shoot when the technology connecting Nick’s computer to his big-screen TV goes on the fritz.

Christine is the head nurse at the facility where Nick lives.  She is in charge of all things medical for Nick and others who live with Nicholas as well as adults with disabilities residing out in the community with their families.  Christine has helped me problem solve complicated medication problems, accessing difficult-to-reach doctors and finding solutions to funding problems for equipment and medical services.  Together, Christine and I can get around pretty much any medical problem that life throws Nick’s way.

Nicholas has had over 65 hospitalizations in his life.  We have known many nurses both for home and hospital care in Canada and the UK.

Nick is a Canadian and he is healthy – he is a living example of why nurses in our country celebrate “The Health of Our Nation”.  And he is medically complex – a testament to years of nursing notes (ie. the real story in the day of a patient) being transformed into best practice.

Today, I would like to say THANK YOU! to all Nick’s nurses, those incredible individuals working now, in the past, in Canada and in the UK.  Happy National and International Nursing Week!

This photo was taken on Nick’s birthday (a ball hockey tournament in Hyde Park, London, in 2010).  Melinda, Nick’s nurse, is on the far right and Angela, another wonderful nurse has her hand on the cup.  Thank you Melinda and Angela, we love you!

And this photo was snapped at the airport when we arrived in Canada last summer.  Christine, our incredible head nurse is on the left.  Thank you for everything you do, Christine!

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Before you stop reading because you think this material might be too dry, well…..keep reading.

There is a small-ish group of people working internationally at the top of their game in the field of innovation (and this discussion has direct benefit to our disability community).  Geoff Mulgan, Al Etmanski, Tim Draimin, Dr. Frances Westley, and Sir Ronald Cohen are a few of the visionaries who are working together to map sustainable solutions for the wellbeing of marginalized populations, including people with disabilities.  Their ideas may well be the key to a good life for Nicholas and future populations with disabilities in the developed world and beyond.

Geoff Mulgan began his talk on Austerity and Innovation with a slide of a J.M.W. Turner painting titled “The Fighting Temeraire“.

The image depicts a huge and beautiful shipped being tugged to her last Berth, to be broken up.  The tug is steam powered – the ship is not.  Mulgan uses this image as a metaphor for innovation…. sometimes we have to break apart what we know and love in order to replace it with something that is perhaps smaller and uglier.  But we must do this to truly innovate – we must have the courage to smash old systems in order to experiment with something that might have great potential for transformational change.

Often, it’s austerity that pushes us to explore new ideas for getting what we need.  When budget-conscius travellers found hotels too expensive, people began ‘couch surfing‘.  It’s now the world’s largest travel community.  Another stunning example of austerity innovation is the Aakash tablet computer, an extremely low cost device currently being massed produced for the poorest of the world’s poor and distributed free to university students in India.

According to Mulgan, 14% of corporate budgets is spent on innovation, research and development.  But no public agency spends this kind of money to invest in change.  The question posed to the audience was “How can 20% in health, education or social services budgets be absorbed without compromising service?”  The traditional answer to that question is to freeze budgets and sell assets.  A creative response is to innovate at the organizational level.

For practical examples of possible transformational change, Mulgan asked us to think about circuit economies – those sectors of public services where people in need of publicly funded assistance keep coming back for more – the recidivism of convicted criminals or people re-hospitalized after medical procedures.  In those cases, one of the great ideas spearheaded by Sir Ronnie Cohen and gaining momentum in Canada is the social impact bond.  This investment tool pays service deliverers based on the success rate of their social impact…. the more effective the social impact (eg. lowering recidivism rates), the greater the investment in the company or agency and the greater the return to the fund investors (private individuals or governments).  It’s an exciting idea and one that I believe holds great promise.

Mulgan talked about community asset sharing as an idea that is beginning to take hold in austerity-bound Britain.  In the economy of commitment, Mulgan says that putting responsibility into the hands of people who care most about outcomes is a good place to start.  The upkeep of parks as the responsibility of a neighbourhood was one example he gave.  Another was a fascinating response to the widespread closure of public libraries in the UK.  A national website called Bookhopper has sprouted up that prompts people to list the books on their own shelves at home, then share and exchange with neighbours or lend through Amazon.  Book lovers meet their neighbours and forge community ties – it’s a whole lot better than closed libraries with no alternatives for free book exchanges.

So, what would be the requirements for government at all levels to change so dramatically during my lifetime?

Geoff Mulgan identifies a few prerequisites for deep, systemic change:

• revolutionize the way in which government makes public their costs and outcomes- eg when all heart surgeons in the UK published their post-surgical mortality rates, the worst surgeons were outed and survival rates improved.
• aggregate capital across different services based on economies of ‘flow’ – eg. in my last post, I blogged about the couple with disabilities in Toronto and their newborn baby.  The homecare workers assigned to the couple were not allowed to assist the parents in caring for the baby, so the Children’s Aid Society threatened to remove the child.  An aggregation of funding and service to focus on the family unit would save money and deliver a service that is truly helpful.
• government must create and fund arms length think tanks to experiment with models of change and innovation.  This is what happens in the field of science, and in Social Science, models must be tested before they are rolled out to vulnerable populations.

DONNA THOMSON began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author and consultant.  In her book, “THE FOUR WALLS OF MY FREEDOM”, (McArthur and Co., September, 2010) available on Amazon, Donna examines her personal family experience through the lens of Amartya Sen’s Capability Approach and a wellbeing index created by Sabina Alkire, co-creator of the Bhutan Happiness Index.

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In the meantime, I find myself trying to control my outrage over a story in the news about a couple who are being threatened with losing their newborn baby to foster care.  Why?  The parents are both disabled with cerebral palsy.  The parent has many competencies (we are talking a gold medal Paralympian) and both parents have home support workers.

But anyone familiar with how social supports work will know that the home care workers who take care of each parent will not be allowed to touch the newborn because he is ‘not the client’.  In fact, home support workers will be attached to one parent only, so even if one spouse suddenly needs help in the bathroom, the caregiver in the house will not be able to assist if they have been assigned to the other spouse.  Such is the insanity of our system.

Because healthy newborns are not allocated home support because they have no medical need, the knee-jerk reaction of the Children’s Aid Society was to remove the child.  The assumptions of incapacity on the part of the parents is bad enough, but this situation reveals a deep and desperate inability of our publicly funded services to respond holistically to family needs.

Our systems need a revamp NOW and that is where social innovation comes in.  More tomorrow.

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Social innovation is a concept that Wikipedia describes as new strategies, concepts, ideas and organizations that meet social needs of all kinds – from working conditions and education to community development and health – and that extend and strengthen civil society.


Excellence in social innovation worldwide is championed by an organization called Ashoka – and anyone excited about positive change in the world should google it.  The heroes of that organization are called ‘Ashoka Fellows’ and there are plenty from Canada.  One is my colleague in the disability movement, Al Etmanski.  The Ashoka Canada website describes Al’s ‘New Idea’ as follows:


Increasing numbers of disabled people are living longer and the longevity means that many will outlive their parents. Al Etmanski addresses a concern that a steadily mounting number of parents live with: “What will happen to my son or daughter when I die ?” He redirects that question to “What does it take to make a life–however long–a good life?” He offers a new way of thinking about disabilities and citizenship and new insight about how to remove the barriers to a good life. His idea helps replace parents’ anxious isolation with planning that realistically contributes to their children’s safety, both while the parents are still alive and after they die.Relationships are the key. In Planned Lifetime Advocacy Network (PLAN), Al and his colleagues have created an infrastructure that systematically builds community, while dismantling the obstacles inherent in the social systems that control publicly funded services for the disabled. Al sees those systems as necessary and does not seek to replace them; rather, his work parallels the public bureaucracy and holds its feet to the fire by demonstrating what else needs to be done. For example, the Burnaby Association of Mentally Handicapped in Vancouver now pays for lifetime membership in PLAN for some people to whom it provides services. Al sees this relationship as “a good place for us.” PLAN’s ability to facilitate relationships for people who are isolated will continue to infiltrate bureaucracies and citizens’ movements and a growing international constituency of families with disabled members.


Al continues to innovate for Canadians with disabilities and their families – the Canadian Registered Disability Savings Plan (RDSP) is a tax sheltered savings tool that enables wealth for those like my son Nicholas, who will never be employable.  The money in Nick’s RDSP is substantial and all provinces in Canada have agreed not to claw it back at tax time.  Also, the RDSP does not negatively impact provincial disability pension benefits.  The RDSP was the brainchild of Al Etmanski and it’s an idea that I championed from the get-go.


Other Ashoka fellows from Canada include Mary Gordon, founder of the Roots of Empathy and Johann Olav Koss, founder of Right to Play.  The list is inspirational.


Everyday, the news is filled with sad or disturbing stories of violence and injustice.  But sometimes, there is a good news story that inspires and the Globe story about Ashoka and the positive power of social innovation is one.
Tomorrow, I will write about how the movement for social innovation is changing Canada.

DONNA THOMSON began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author and consultant.  In her book, “THE FOUR WALLS OF MY FREEDOM”, (McArthur and Co., September, 2010) available on Amazon, Donna examines her personal family experience through the lens of Amartya Sen’s Capability Approach and a wellbeing index created by Sabina Alkire, co-creator of the Bhutan Happiness Index.

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