I have noticed your advertisements in the paper regarding the new campaign and am very excited about it. What a wonderful way to communicate to the public how everyone does belong.

I thought I would share a little of our story with you. I have a fifteen year old daughter who is moderately mentally challenged and has some physical disabilities as well. She is quite high functioning and is integrated into Chestermere High School quite well. She does spend a fair amount of time in the resource room but she attends foods classes, art and various other options to receive an integrated program.

Kacy has wanted to be a teacher since she was about four. She doesn't really have many memories of life before school as she began at the ACH in the preschool multi-handicapped preschool at age two half days. She plays school in her spare time with dolls and cats, whoever she can find to teach.

Last year, her resource teachers told me it was a shame about Kacy's disabilities (that is still a remark that hurts) as she had a wonderful gift of teaching and they often used Kacy's skills with more challenged students. It got me thinking...

This year she entered high school here in Rockyview. She spent exam week in January at home with me and very bored. Kacy loves school and would spend all week there if she could. I approached the elementary school in our area to see if there was a possibility that Kacy could help out in their library during exam week in June. The librarian thought it could work as Kacy has gained considerable library experience working 5 periods a week in her own school library. Well, from there it has evolved. A grade one teacher that worked with Kacy as an aide asked if Kacy could come and help out in her class as well. It is proving to be most successful. The kids in the school like Kacy, ask for her help and ask her to come out at recess and eat lunch with them. She is helping in the library by reshelving books, helping the librarian with a reading program, and doing inventory. She works in the classroom with students, reading and writing and redirecting. She takes things off bulletin boards, puts them up, does photocopying and is helping pack up for the summer. She is in heaven...and so are we. I have asked the school to write some thoughts down about Kacy and how they feel this inclusion is making Kacy a part of our community and they have agreed. They may also take some pictures for us.
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Karen has serious Down syndrome and no ability to communicate verbally. She used to live a "pseudo-life" doing routine work in sheltered workshops. As a result, Karen turned inward.She was clearly depressed and had no self-confidence. She was also frustrated at the lack of control over any aspect of her life and would grow angry and resistant to the slightest change, such as a move in work stations at the sheltered workshop. Over a period of years, the workshops closed and Karen 'supported to enrich her world', a process that was scary for her at first.

Gradually, she found her place working in a family resource centre where she helps kids. (It is not a childcare centre, but women go there for help with various issues — parenting, financial, new immigrant issues — and are frequently struggling with self-esteem for many reasons.) Women come together, the children play and the women broaden their meager support networks.For the first time in her life, Karen is an adult woman supporting kids, not a "severely disabled woman". She has become the caregiver. Karen has changed the atmosphere of the place. When Karen is there, "happy and valued and contributing", the women see this as a place where everyone is appreciated and everyone's gifts are appreciated... as Karen's has been. The Centre becomes a place where their gifts will be honoured and not just a place they come to have their needs met.

Karen knows that she is valued and appreciated. She holds her head higher, walks taller, and has a new calmness and serenity about her. She knows she matters.
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In her late 20's, BJ had worked in daycare for four years. Working to get Level II daycare certificate; she loved this work. BJ is not well-educated and has been struggling with illiteracy because she was not integrated into a good school program as a kid and taught to read. People assumed she was incapable of learning.

BJ was very angry about this experience and is now proving them wrong. She is learning to read so that she can do a two-year early childhood education course.

She loves working with toddlers especially. "They look up to you as a role model." BJ recognizes that few adults with developmentally disabilities have independent full time jobs, and is proud that she is one of them. She loves her work because of the sense of pride that has come from learning about responsibility, about being able to clothe herself and put food on the table. BJ has allowed her friendships to develop and to become closer and richer because of her better sense of self and her independence.

BJ is proud of being able to read, getting around alone on the bus, and being a tax-payer.
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Jade is a woman with a severe developmental disability whose family was extremely reluctant to allow DDRC to try to place her in the community.They feared that she would be attacked, teased, hurt, or would fall and hurt herself.

Finally, DDRC got her work in a hotel, a real job for which she had to apply and interview for. Her brother, Ken, a major decision-maker in family was extremely skeptical. He thought she was only safe with paid workers who looked after her and made decisions for her in a known and protected environment.

One day he walked into the hotel with her and had an epiphany. She was confident walking into the hotel and leading him to her workstation past all the other hotel workers, who all greeted her as though she were part of a team and part of a community... she belonged. He suddenly saw that she was much safer as part of a group of people who really cared about her than as someone always under paid supervision. Ken has been very impressed by the hotel's willingness to problem-solve and work with him where small problems have come up. And the hotel staff have lost their own sense of fear of how to approach or help people with disabilities.
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Nadine, who has cerebral palsy, spent many of her formative years in an institution, where she was left to lie on the floor for much of the day. Her "shower" was to lie, in the company of others, including men, on a metal gurney, covered only in a sheet, and to be hosed down.

As an adult, she moved into a group home which was better. There she learned small trades and math skills. She used to go to a medical equipment shop to get her wheelchair fixed once in a while, and while it was being tinkered with, she would chat with a fellow who worked there.

Richard enjoyed their chats over the five or six years she came to the shop, and missed her when the better part of a year passed without his seeing her. When she did come in again, he felt a surge of pleasure, and slipped his name and phone number into her pocket before she left. She called him. He cancelled a dinner with his parents, and spent an entire Sunday with her. They have been together now for 15 years, and married for 13. Richard was attracted by her courage. "She lives to dance.That's what she loved to do. She would go out to a bar and dance by herself if there was no one to dance with her." He adapted a computer for her and found her access to technology that allowed her to read and to create sentences. With Richard's help, she designs web pages and has designed her own greeting and business cards.They now operate an e-business together.

She is more confident and more secure than she once was. Richard, who now works with computers, takes her with him on his calls, and spends as much time with her as possible.
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Ginette is a young woman with a moderate disability who had been extremely frustrated with her life at the sheltered workshop.She hated getting off the train with 60 adults who have developmental disabilities (many more austerely disabled than herself) every morning, doing make-work every day, and facing this as the sum total of her future.She knew that society values a good job, wealth, physical beauty, self-worth. In society's eyes, she felt she was inferior and fell short. She was frustrated, angry, had poor self-esteem, no friends, and was prone to angry emotional outbursts when frustrated.

Ginette was placed at the Gap where she began in a janitorial position and eventually had a position created for her taking care of stock.Today, five years later, she is a completely different person.She looks confident, dresses beautifully, and has developed social abilities she did not have before.

She has friends and when staff members go out for a beer, Ginette is invited along. Managers have noticed that staff are different when Ginette is around.They treat each other with more respect, are kinder and more accepting with each other when Ginette is around.
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By Krista J. Flint, manager of social marketing
Developmental Disabilities Resource Centre of Calgary (DDRC)

All of my references seem to centre around the large cedar book case where my 3 baby boys and I seem to spend endless hours pouring over books as my 7 year old astonishes himself with his newly acquired ability to read to his younger brothers. I often think about my dreams for them as each day takes them farther from the intimacies of my body, and away from the cocoon of our home. I imagine their lives, careers and futures in fantastic detail. (It is one of my favourite ways to pass time). And while the specifics of their existence in the world remain foggy and difficult to envision, I am sure about a few things I desperately want for them.

I want them to know deep and life-changing love.
I want them to learn the names of their neighbours.
I want them to have friends that knock on our door on Saturday morning.
I want to be annoyed at the frequency with which the phone rings for them in the evening.
I want to observe them unnoticed at a school dance, in midst of their peers.
I want them to feel the exhilaration of acceptance and to know the heart break of being left out, and to be able to imagine this same heart break in others.
I want them to be inspired by all there is to learn in the world.
I want them to feel the pride and fulfillment of a first pay cheque.
I want them to experience the joy of participating in an endeavour that is bigger and more important than they are in the universe.
I want them to understand the importance of their place and uniqueness in the world.

Parenting has helped me to understand that I can know very little for sure about humanity, but I feel as if I know this:

Children belong on little yellow school buses, or careening across playgrounds, oblivious to pain and loss which sadly swirls around the world.

Adults belong in coffee shops and in offices and factories, in malls and libraries, in traffic and line-ups at the post office, connected to each other in the hairy, messiness of day to day life.

Children belong in families, babies belong in Mothers arms, alone and yet a part of an intimate kinship of parents up in the night... in nurseries, in rocking chairs and walking hallways.

My babies, and the ensuing privilege and chaos of three children under 7 have made me realize that we do not exist except in the ways that we relate to one another. Each identity waits in breathless expectation of being created and flourishing in the gaze of someone who knows us and would miss us if we were gone.

This is the stuff that makes us human.

That which separates us weakens us. Where would I be without you to make my experiences real?

I belong to you and you belong to me.

Children need other children. Kids belong with other kids, brought together by that which they love, not by what society perceives as most broken about them.

Neighbourhood schools, regular classrooms, community places - this is where real belonging lives.
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By Krista J. Flint, manager of social marketing
Developmental Disabilities Resource Centre of Calgary (DDRC)

Relationships that develop into real and enduring friendships are the most profound expression of our deepest human quality. It's the manifestation of the characteristics of freedom and esteem; it answers our soul's most desperate yearning for connection to each other.

As children we gravitate to others on the basis of proximity. Neighbourhood kids, fellow bus travellers, children of our parent's friends provide a wealth of opportunity. There is little magic or chemistry in this equation - most often it happens because of a certain amount of intentionality.

When we attend school and develop into young adults, we begin to decide for ourselves who we will seek out in our world, whose company we will cherish, which characteristics we crave connection to, and most importantly, which identity we will create for ourselves which will invite an intimacy that could blossom into friendship.

As grown ups, friendships made when young often carry over into our adult life. These are the relationships we have nurtured, and which have witnessed and endured more changes in ourselves than we can often bear to acknowledge. If we are lucky (and do the type of work which brings people of like sensibilities together) we make friends in the workplace. Perhaps this is due to these production-oriented times in which we live: we find ourselves in our offices for as many hours in the day as we are at home with our families.

The devastating reality for people with developmental disabilities who are deeply embedded in service delivery systems is that the natural ebb and flow of life passages (which facilitate friendships), has often been denied and has left people isolated and terribly alone.

We are defined most significantly by our relationships with others. Unlike the families we are born into, friendships - those which are real and withstand our foibles - are completely of our own making. They belong to each of us alone. They reflect who we are, who we wish we were, and allow us to remember our value in the universe. Someone once said that "love and family is blind, but friendship, thankfully, closes its eyes." I know I am worthy of goodness, grace and affection because I have those in my life whom I have chosen and whom have chosen me.

What if that was not the case? What of lives which are defined by what is perceived as most broken, what most desperately appears to need fixing, and whose days exists in a world of supports, paid companionship, and within (in spite of best intentions) an environment which reenforces isolation and soul crushing loneliness.

Friendship is a fickle flower. It needs tending and nurturing. The soil conditions need to be right, the light adequate but not glaring, and (a fact that is little known) it requires a sheer force of will. Things grow best in the wild. You only need to taste hot house tomatoes from cellophane and compare it to a field tomato still warm from the sun to understand the difference.

At the Developmental Disabilities Resource Centre of Calgary, there is no shortage of committed and talented gardeners.

DDRC's Inclusive Schools Initiative supports Calgary schools to become places where children are drawn to each other because of what they like, and what they are good at. It has provided resources and strategies (to both curriculum and social structure) which can create warm and nurturing places for all of our children.

DDRC's Community Support Program and Community Living Network are tremendous examples of how the melding of proximity and intentionality are imperative in the magical equation of friendship. Community Resources Workers (CRWs) work diligently to help clients find themselves in places like their work lives, where they are most likely to develop relationships with coworkers and community members. The Community Living Network helps clients develop uniquely individualized living situations which reflect as broad a variety of instances as there are personalities. It is in these homes, full of the messiness of life, that real relationships are fostered.

Real lives and real friendships happen here. They happen in high school classrooms and elementary gymnasiums, in offices, at the post office at tax time, in churches and in babysitting co-ops. The chemistry evolves in driveways between houses, and across children's soccer fields, in art classes and at the YWCA.

The soil is fertile here. It's rich and it's real, and it is warmed by the sun.

You can get a tomato grown in a green house, but this one tastes so much better.
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By Krista J. Flint, manager of social marketing
Developmental Disabilities Resource Centre of Calgary (DDRC)

Our most deeply powerful attributes as citizens is our ability to contribute to the betterment of the human family. Inherent in this is an understated and yet profound assumption of competency. Becoming the "giver of support" rather than the receiver, is an often-overlooked vehicle to shifting the power differential that resides so often in the experience of people with developmental disabilities.

Call it charity or benevolence; one can't over look the danger in a constant and unending role as the recipient of these efforts. To what degree then, could this change in roles, forever alter our paradigm about the ways in which we measure the value and contributions of one another? What is the value of one who teaches us to be more human?

Persons with developmental disabilities are taking their rightful place as classmates, employees, neighbours and for the first time, as volunteers. Communities are coming to see that schools, workplaces, and neighbourhoods are bereft without the participation of those people who have been arguably among the most marginalized. Sadly, many people with developmental disabilities have experienced profound wounding as a result of segregation, isolation, loneliness, poverty, and institutionalization. The effect of such is often the most disabling of conditions. What could be learned from these experiences, and from the untapped potential for empathy and support that exists in people with developmental disabilities?

For some time we have known how good it is for people with developmental disabilities to participate in the volunteer sector. It has provided valuable job skills training for people for whom entry into the workforce has been difficult, if not impossible. It has allowed many to experience the camaraderie and soul-affirming effects of working in a group to achieve something larger than any individual's set of circumstances. Litanies of these positive effects have been both researched, and documented. But what of the value to community volunteer resources? We can no longer afford the cost of ignoring the depth and significance of the giftedness that exists in the participation of people with developmental disabilities.

It is imperative that we focus greater resources on formulating and articulating the reasons that communities are better and stronger when they include individuals with disabilities. We need to use vast and far reaching tools to demonstrate to the world that all of our children benefit when children with disabilities learn in regular classrooms. We must find ways to illustrate that the approaches used to include an individual with a disability as a volunteer, are the same ones we can employ to access the important resources of new Canadians, or new moms as volunteers. Accommodation and inclusion are most often a matter of rethinking our approaches to inviting participation. And reengineering these approaches to create strategies that will welcome those whose gifts of which we are most in need. We must invest the appropriate resources in challenging ourselves and those in volunteer resources to consider the terrible cost of ignoring this potential. Our volunteer sector, our communities, and indeed our human family are in terrible danger of forever losing the ability to see the giftedness in each other. It should always be most evident in the way we give freely of ourselves to improve the lot of another.

The human condition is one of interconnectedness. The key to ensuring this important link exists in the voluntary contribution (and in the act of welcoming the contributions) of those with developmental disabilities as the bestower of important gifts... gifts we can little afford to live without.
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By Al Etmanski, executive director of PLAN

“You must be the change you wish to see in the world.” - Gandhi

I can still remember where I was when I first heard about Judith Snow's Joshua Committee. A jolt of electricity shot through me, and I haven't been the same since. It made me see my daughter Liz's life so differently. Catapulted out of my preoccupation with her therapy, physical and mental development and, yes, disability, I landed with new eyes and new challenges: to ensure her inclusion and prevent her loneliness.

I will be eternally grateful to Judith Snow, Marsha Forest, Jack Pearpoint, Peter Dill and the other members of that inspiring team. They were the first to nurture my understanding that friendship is primary and disability is secondary maybe even irrelevant. There is no return from such a profound transformation. Thankfully, (see Jack Pearpoint's From Behind the Piano: Building Judith Snow's Unique Circle of Friends and Judith Snow's What's Really Worth Doing and How to Do It, both available from Inclusion Press, www.inclusion.com).

With them as my guide and accompanied by other teachers and visionaries like John Lord, Peggy Hutchison, Dave Wetherow, Nicola Schaefer, Zana Lutfyia, Bonnie Sherr Klein and Jean Vanier, my insights deepened and expanded. I wasn't alone me and others were transformed as well. Confidently we plunged forward into the mystery of what seemed so obvious and so simple. My own work led me, along with my wife Vickie and a small group of pioneer parents, to co-found PLAN, which emphasizes personal networks as the foundation for the future safety, security and well being of our family members. Others branched out in different ways.

Nowadays few would disagree about the importance of friendship. Based on this insight, new organizations have been created and new initiatives within existing, organizations have been launched.

Mission statements have been revised, job descriptions expanded, courses outlined, books and articles published and circulated. Many of us travel the world providing keynotes and workshops. The response from audiences of individuals and families we meet remains cautious but hopeful and eager.

Yet I am feeling uneasy and uncomfortable these days, for, despite our efforts, I don't think we've been very effective. After 25 years, I would estimate the numbers of labeled Canadians enjoying genuine relationships as being in the low thousands! Just to be clear: when I speak about relationships here, I am using the measuring stick of authentic relationships reciprocal, heartfelt and freely given not the occasional "hello" on the bus, eating lunch in the food court or the odd "friendly" visit. Whether these relationships are naturally formed or deliberately facilitated, relatively few isolated individuals have benefited from our intention. Judith Snow, her colleagues and many others inspired by our passion could be forgiven for thinking we have let them down. It is time to rethink our approach.

There are many numbers of reasons for our limited results. The usual suspects are government (not their funding priority), service providers (too much control) and society (lack of awareness about the importance of relationships). Then there is the reality that nurturing relationships takes longer and is more complex and mysterious than many of us realized.

There is truth to all of these, and certainly in combination they are powerful barriers to overcome. Nevertheless, I would add another culprit: ourselves. Certainly, I can see where my own ego and actions have prevented the concerted and collaborative effort I now realize is required. I have been too focused on our own work and too dismissive of other approaches. I can also see where an excessive focus on the sentiment or romance of friendship can mask the fact that it must be accompanied by a lot of hard work.

The change we want is more complex than we think and will require a radically different approach to ensure widespread adoption. After 25 years, our challenge is no longer to prove the wisdom of our insights. It is to ensure their widespread acceptance and sustainability.

Financial and environmental sustainability have seeped into our public consciousness and now inform public policy; it's time to give equal attention to social sustainability. Unfortunately, there is very little written on sustaining social innovations. However, literature about technological innovation may provide some insight into how to address our restated challenge.

In industry, a distinction is made between an invention a new product of process and an innovation in its widespread adoption or sustainability. For example, after hundreds of experiments in Petri dishes, Dupont chemists eventually found the chemical combination for Lycra. That's an intervention. After repeated testing, the product was ready for widespread marketing and distribution, and Lycra is now a household word. That's an innovation.

In our case, the social "intervention" was creating and testing a variety of approaches for welcoming isolated folks into relationship and community. Now we must turn our attention to scaling up, expanding, replicating and sustaining our "innovation" (See Lisbeth Schoor's book, Common Purpose, or www.commonpurpose.org for a detailed discussion of the key ingredients for moving from model to mainstream).

If you are experiencing the same disquiet as me, I offer the following preliminary considerations as the basis of a widespread and transformative approach to ending the isolation and loneliness of persons who have been labeled or marginalized.

1. Establish an Intentional and Bold Agenda

The time for pilot projects and small initiatives is over. It is naïve to assume they will lead naturally to system-wide change. Loneliness is pervasive and debilitating. We know how to cultivate and nurture relationships for everyone, regardless of circumstances and conditions. Let's not settle for anything less than a permanent, profound and irreversible alteration in established patterns of policy, funding, practices and attitudes.

We want to change the world view of our institutions and our culture. We seek to embed our social insights, inventions and innovations into the structures, systems and institutions of our society and to shift societal attitudes about disability. To end loneliness and isolation, we must be intentional and bold. We don't need any more demonstration projects.

2. Study Change

There are different types of change, and they operate at different speeds. In fashion and commerce, change happens very rapidly, seemingly overnight. Nature responds more slowly, taking decades, even centuries. Change to structures of government falls somewhere in between and requires its own unique set of strategies. Changes in cultural attitudes will take considerably longer probably not in some of lifetimes but we can lay the groundwork for others to follow.

We will need to think through the nature of the change we want more carefully than ever, and develop a sophisticated understanding of the patterns of institutional change. These are complex adaptive systems full of paradoxes, soft underbellies and tipping points. New questions will lead to new answers. How do we translate the imperative of a world where everyone belongs into policy? What should a successful national strategy contain? What are the fundamental steps that will lead eventually to the change in attitudes we all want? (For further information on relationships between time and change, see the website of the Long Now Foundation, www.longnow.org).

3. Unify our Efforts This challenge is bigger than any one organization.

None of our groups has a monopoly on concepts or process. There are as many ways, including some we disagree with, to nourish relationships as there are people. But a dozen items on the government agenda by a dozen different groups in the disability sector is a recipe for confusion and inaction. We need a unified, pan-Canadian effort within the disability sector to get the "permanence" ball rolling. We will have to leave our organizational territoriality behind.

Likely we will have to begin with a national conversation to establish trust and convergence before we can take action. (The PLAN Institute for Citizenship and Disability is completing a best practices report and policy recommendations on social networks for people who are marginalized and isolated in Canada).

4. Collaborate with our Allies

This challenge is bigger than the disability sector can tackle on its own. Indeed, it is bigger than the non-profit or the government sector. We can no longer afford the luxury of thinking exclusively along the sectoral lines. If we are to be successful, we must find ways to collaborate with all our allies and supporters, everywhere and anywhere.

This is easier said than done. It might involve strategic alliances with people we have previously seen as "the enemy," such as professionals and service providers. Or it might mean cooperating with people we are uncomfortable working with, such as businesses and corporations. Sociologists talk about two types of social capital: horizontal and vertical. We are generally pretty good at talking with people who are like us (horizontal social capital). Sustainable change, however, requires that we become equally comfortable talking with "powerful strangers" (vertical social capital) or recruit others who are.

5. Proclaim Our Values

Jean Vanier's Becoming Human is a national bestseller for a reason. More and more of us are confronted by the twin challenges of belonging and meaning. Pay attention to public opinion polls and you will see the yearning to belong to something bigger than oneself creeping up the list of priorities for most North Americans.

We are not supplicants in this quest to end isolation and loneliness. We are experts. There is moral value and intentionality to our vision and practice. And because we have witnessed or experienced exclusion for so long, we recognize, perhaps more clearly than the majority, the underlying principles that will sustain such change. It is time for our wisdom and insights about fairness, reciprocity, forgiveness, hope, hospitality and compassion to be made accessible to everyone.

This yearning to belong that we experience so acutely with people who have been labeled is universal. It's deeply within the tissue of our society.

Our response could also be universal. We have more collaborators than we realize. Perhaps we have the beginnings of a social movement. Think of the "slow food" or "simple living" movements and the corresponding changes they are inspiring. Social movements are, by their very nature, intentional, cross-sectoral, cross-organizational and inspired by values.

As the forces of technology, consumerism and globalization sweep through our society, the first time is ripe for a broad-based movement focused on enriching and deepening our connections with the people around us. I think this is a movement we could lead.

One of Judith Snow's oft-repeated maxims is, "dreams shape reality." Judith is not naïve. She knows dreams may shape reality, but won't change it. Dreams have got us started, but reality needs a helping hand. Only our collective creativity will fulfill the promise of no one alone.

Al Etmanski is Executive Director of PLAN, www.plan.ca. He invites anyone interested in exploring a sustainable agenda to end isolation and loneliness to contact him at aetmanki@plan.ca.
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