My 20 Minute Speech

Last week I was asked to write a 15 minute speech, word for word, nothing off the cuff. Hopefully it will get me access to getting some corporate inspirational gigs. Good fund raising for WPIT.

It took about four hours to write and it's more like 20 minutes long. Let me know what you think.

Can World Peace Really Happen?

My name is Judith Snow. I am happy to be here. It gives me great pleasure to share a little bit of my life’s journey with people – with you. On top of this I have a burning question that I believe you can help me answer. My question is: “Can World Peace Really Happen”, or more accurately, “When and what will it take for people – people just like you – to get that World Peace can be created and that it will be people just like you and me who do the job to make it real?

This is how I got my burning question. Obviously I am a person with a severe disability. I was born in 1949, in Oshawa Ontario, to a very ordinary lower middle class family, third child of Ted and Rita Snow. By the time I was seven months old I had never tried to sit up or creep, and it was apparent that I was not developing in the usual ways. After months of trips into Toronto to see many doctors my parents were told I had Muscular Dystrophy and that I would not likely live past age four. Clearly they miscalculated. I am now over sixty.

What is true is that I have a very rare sort of body. I have the same muscle strength now that I had when I was born. I have a baby’s strength spread over an adult body, which means I can move everything a very tiny little bit, and nothing except my face very much. I do a lot with my face!

In our world we call this situation a disability. Disability as a concept means that an essential function is missing. In other words, if I say a bomb is disabled I mean it will no longer blow up – essentially it is no longer a bomb. If I say a disabled car is blocking the intersection of Highway 401 and Yonge Street I know that hunk of metal is now a barrier to traffic and not a vehicle any longer.

What I am saying is that I grew up knowing and being surrounded by people who knew that my essential functions were missing. There is a lot more to say about that, but for now what is important to understand is that what we think we know and what is really so can be very different things.

One day when I was six years old my Father was washing and dressing me. As I sat there he explained to me that some doctors in the United States were putting children with Down Syndrome to death because they believed that society should not have to bear the burden of the extra costs that caring for these children would bring.

Dad grew up in rural England, in a small community in the southwest of the island. The major economic activities there were raising cows and sheep, and digging rocks to plant potatoes.

He explained that as children with slower thinking grew up, they were able to grow potatoes along with everyone else. Such folks lived and worked along side of each other with no distinctions made. But in his boyhood, he said, children like me were killed because no one had enough food or other resources to support someone who would likely not be able to grow food.

I asked him why he and "they" were still keeping me alive. He replied that perhaps I would be the one to find the answer.

Being a very straight forward kind of kid I never asked him what was the question I was seeking an answer for. I simply believed that the question he meant me to answer was: “Why do people get Muscular Distrophy?” I decided I would be a research doctor and started to take a deeper interest in school. In my teens I felt the burden of isolation and rejection. The question I had to answer turned into: “Why is society so mean to people with disabilities?” By my early twenties I had become a prominent disability rights advocate. Now I am asking myself and you a different question, but I will get back to that in a few minutes!

By the time I was sixteen the medical prediction obviously had shifted and “they” said I would live until I was thirty. My parents were clear that I should have the same opportunities as my three siblings and my Mother spent two years finding a university that was sufficiently flat so that I could get into the essential courses. There was no mandate for accessibility in those days. I continued to enjoy my academics and in 1968 I entered an Honours BA program in Mathematics and Psychology at York University.

Still, underneath it all we knew I had no real future, and 1978 found me living in a chronic care hospital, gradually losing my little remaining muscular strength, bloating with oedema and struggling to breathe without coughing. My time was near!

However, at the same time the determined side of me was going back to York University four days a week to run Canada’s first Centre for Learning Support. As I had completed my BA, and then my MA, at York I had realized that there were many students or potential students, and even some staff and faculty members at the university, who would be empowered if there were somebody around to help them organize the accommodations they needed to do their work more effectively – the blind student who needed a Braille map to get oriented and some volunteers to read texts onto tape, the professor with newly acquired Multiple Sclerosis who needed to get registered for Wheeltrans, and so on. In 1976 with a seed grant from Atkinson Charitable Foundation I set up this campus support system. Now every university and college in Canada has one.

While on campus I met a professor of Graduate Studies in Education, Marsha Forest. She was researching the value of inclusive education – classrooms where students of diverse academic abilities study together. She and I became great friends and challenged each other as to how far this inclusive idea could go. I began to see myself through her eyes, as a vital, intense woman with good ideas, interesting questions and much more to give and take than a part-time job, a bed in a chronic care hospital and a medical death sentence could give me room for. Through Marsha and her husband Jack, President of Frontier College I met many more energetic and paradigm breaking people. I began to hope I could live.

The short version of a long struggle is that in late 1979 I found out my increasing ill health was due to an allergy and my sense of futility was due to being trapped in a service system dedicated to comfort dying people. I lived on others’ couches for a while, and by June 1, 1980, with the intense political and personal support of all sorts of people, I became Canada’s first person to have government funded individualized support – money to pay the wages of assistants who go with me throughout the day so I can work and live as a fully participating citizen.

I wanted to know how it was that Marsha and many of the people I met through her and Jack were able to see me not as a defective person with a dysfunctional body that could not meet the demands of life but as an interesting and resourceful colleague who lives with some unusual challenges and opportunities. Same evidence, different approach and extremely different personal and social outcomes!

As the blindfold of disability thinking gradually left my understand, and believe me it took me many years to be able to let go of the disability paradigm totally, I realized that people who are labelled disabled are always contributing something. I also gained evidence that we would contribute much more to the economy and to our communities if we were actually supported to make the contributions we are good at making, not the contributions others think we should have been able to make.

Let me give you some quick stories to illustrate what I mean by contribution. In 1993 fifty-two people moved into the thirty-six apartments of Courtyard Housing Cooperative in North Toronto. The coop is designed to be inclusive so people of a wide range of abilities, cultures and incomes were invited to become neighbours. Most of us had never met before moving in.

Imagine how long it would ordinarily take fifty-two strangers to get onto speaking terms and to know each other, especially in a busy, urban apartment block. It is predictable that we would never get to know each other well.

We all knew each other in three weeks. Here’s how it happened. A middle aged woman, an enthusiastic Special Olympic athlete by the name of Miriam, has the characteristic of walking into people’s apartments without knocking, asking people personal questions, like: ”Why is your nose crooked?”, then walking into the next apartment without knocking, telling everyone there what she has just learned about their neighbours and then asking them the same sort of questions. Soon we were all talking to each other, if only to gossip about how to handle Miriam and her questions.

Miriam is the perfect ice breaker and we made her head of the Social Committee. But here’s the not so obvious contribution, the powerful gift, that Miriam gave us. Through Miriam we learned that many of us had begun to feel ill soon after we moved in. Without Miriam I would have known only that I felt sick. With Miriam building a circle of story telling we discovered that “WE” feel sick! We formed a committee, took on the city who own the building and discovered that they had cut costs by putting in an inadequate air circulation system. There is a car park under the apartments and many were being slowly poisoned by the exhaust gases. Within six months we were able to get an individual air circulation system added to every apartment.

In those six months one person died. Without Miriam how many more would have died before we could meet ourselves and get organized to deal with the danger we were facing?

Another story – in 1993 I started an art guild called Laser Eagles. Twelve artists are part of this – I am one of them. One way or another none of us is able to create a painting by ourselves. In the beginning each artist would wear a laser pointer strapped to the head, arm or leg, some part of our body we can move with some reliability. With the laser light we would show our supporter, called a Tracker, what colour, what brush and how to create the painting. The Trackers have often been college students who need a community placement or a senior who has time on their hands. These days none of the artists uses a laser pointer anymore. We have all found other ways, often without words, to communicate with our Trackers.

One artist is a young man, Aaron, who has never spoken and whose body is tiny and very fragile. In the first two years of Laser Eagles we often had young men and women from a police training college program come in as Trackers. One police cadet would hold Aaron’s hand, one would hold the brush, and through subtle flickers of his fingers Aaron would indicate where to put the paint.

There is nothing to match the effect that supporting Aaron had on those cadets. Throughout quiet hours of patiently following the tiniest movements young men and women discovered their capacity to listen, to relate, to appreciate creativity, to stand up for the value of diversity and to be peaceful community citizens.

Young Aaron literally has the capacity to single-handedly gentle an army. What he needs to give his gift is a stable context to create his art and plenty of access to young men and women.

This is how I got my burning question: “What will it take for people to get that World Peace is available through including diversity in our lives and communities?” It seems like a very airy fairy idea until you spend time with Miriam and Aaron, and the hundreds of other people I have spent time with or whose stories I have heard.

It’s simple enough. First you decide to be inclusive and welcome someone who is very different from you into your life or your community’s life. Then that person or that group messes something up, either because they don’t like the rules, or they can’t understand the rules or they just simply can’t do it. Then there is a choice – re-establish the old rule or do what it takes to make a new one that works for everyone. Those who decide to take the journey to build a renewed context, a renewed community, find that along the way they not only got a beautiful painting or healthy air in their apartment building, they also became able to create peace along the way.

In my experience the work of making oneself ready and then actually receiving the gift of diversity and peace making looks very different than expected. It is easy to miss if you aren’t willing both to look for it and then see it. Many years ago I spent several days in a south western US desert. There are tiny flowers everywhere in that region, but I did not see them for nearly three days. My eyes were used to much bigger flowers, with very different colouration. It literally took days for my visual organizing system to prepare itself to interpret “flowers” even though the subtly hued blossoms were there all along.

I wrote the following story to talk about this journey of welcoming diversity and preparing ourselves to be peaceful.

The Bicycle

This is the context of the story:

The first character is David who is the dad. David is a city bureaucrat and a volunteer who visits a voiceless young man in a state run nursing home whose name is Chris.
Chris enjoys collecting small plastic toys.
The family consists of David's wife Joan and 3 kids. The third child is Joe who is 10, burly, egocentric and greedy.
They regularly attend a church that has a strong social committee.
Only David has met Chris.

At the beginning of our story, it is Christmas time. David, disturbed by the materialism of Christmas, decides to follow Chris’ example of enjoying simple pleasures. This idea turns out to be a hard sell with the family, especially Joe who has his heart set on a specific bicycle.

On Christmas day, the extended family gathers. Joan is cooking an extra fabulous dinner since she has ample time because she has not had to buy and wrap many gifts. When the time comes to open presents, each person gives each person a simple gift, costing 0 to 5 dollars, chosen with that person’s capacities and interests in mind.

As the thoughtfulness and creativity emerge, people become more and more excited. Unlike other Christmases, family members become interested in each others' gifts, and appreciative of the newly enjoyable interaction – except grumpy Joe.

Every one of Joe’s gifts is a coin or a bill, and as time passes others pass him some cash under the table. By the end of the day he has accumulated $21.53. Joe is confused. He loves the money and the attention but it is nowhere near enough for a bicycle. Nor does he actually want to be thought of as only a money grubber.

After dinner, to Joan’s shock, Joe offers to help with the dishes.

After Christmas, David is filled with curiosity about his son's confusion. David takes opportunities to talk to him and also invites him to his next visit with Chris. At the visit Joe is uncharacteristically silent and visibly uncomfortable, but offers to come on the next visit too. In the meantime, he gets excited by discussions about how to turn his $21.53 into enough for a bicycle.

Early in February, Joan and David are both shocked to discover that their credit cards have 0 balances!

Through a series of small investments and odd jobs, strong arming everyone who was present at Christmas dinner, Joe has raised his cash to $60.79. One day before spring break, on the way to a visit to Chris, Joe and David see the exact bicycle in a going out of business sale and buy it on the spot for $49.99. Joe proudly shows it off to Chris, riding it around and around the room. Chris beams with joy.

Some time after spring break, guys at school tease Joe about the time he spending with Chris. Joe is confused and starts a fist fight where another child ends up with a broken arm.

Fortunately the school uses restorative justice instead of zero tolerance. Joe and his parents find themselves facing the injured child, his parents, several other children and school officials. This gathering is led by a justice oriented listener. Each person explains the incident and its impact on them. It emerges how frightening teasing is to the children and how no one seems to know how to deal with it. Joe is nearly in tears. He turns to his parents and explains how he doesn’t know how to be both a person who likes and respects Chris and a regular boy who makes fun of “gays” and “retards”.

No one has ever seen Joe be so vulnerable and articulate.

The resolution of the meeting includes a decision to bring Chris to the school and have Joe and his classmates make a presentation about inclusion.

Next Christmas comes. The nursing home made less profit this year, so the executives decide to cut costs by closing it for the holidays. Chris has no place to go to over the holidays and the official decision is made to permanently move him to a bigger facility two states away. Upon hearing this, David and several people connected to the school and his church organize a ten day vacation for Chris at the church’s retreat house. They recruit paid and volunteer helpers, and secure his return to the same nursing home when it reopens. All goes well and Chris goes to Joan’ and David’s for Christmas dinner. Joe does not receive even one quarter and he doesn’t seem to even notice his gifts. He is too busy helping Chris open his plastic toys and eat his pureed ham and turkey dinner.

When Joe helps take Chris back to the nursing home on Jan. 3, he notices Chris longingly looking at the top drawer of his dressing table. Joe peeks into the drawer and sees the jumbled collection of old pictures and plastic figurines, some quite cheap but some complex and interesting He has an insight.

Joe takes his remaining $10 from last year’s bicycle fund. Working with the shop teacher and his classmates, he constructs a wall hung display cabinet and some picture frames. A few weeks later the entire class participates in putting Chris’ bedraggled family pictures back together with clear tape and into beautiful, simple frames. Chris chooses and organizes the plastic toys he wants in his display cabinet by eye blinks. The most prominent toy is the one Joe gave Chris for Christmas – a happy clown on a bicycle.

The End

My final point is that the gift of diversity is everywhere. Every stable country has its gypsies. Every faith group is one fence apart from people who believe something else. And certainly, very, very certainly every family has at least one member who physically, intellectually or emotionally is very different in some deeply challenging way.

What would it take for you to accept that these challenges are placed at your doorstep so that you can receive the gifts of more happiness, a more vital and stable economy, more creativity in your personal and community life, more accurate communication, deeper more trustworthy relationship, and best of all a planet-wide outbreak of peace? I am asking because I know that once you accept this truth about inclusion you will help me to build it.

Thank you.