Sentimental Journey
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We've had 25 years of friendship talk, and people are still lonely

By Al Etmanski
Reprinted with permission from Abilities Magazine, Winter 2004

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.

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 - many 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 intentions. 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 any number 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 or process - and an innovation - its widespread adoption or sustainability. So, for example, after hundreds of experiments in Petri dishes, Dupont chemists eventually found the chemical combination for Lycra. That's an invention. 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 "invention" 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 them. (See Lisbeth Schorr's book, Common Purpose, or www.common-purpose.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. 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 our 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 foundational steps that will lead eventually to the change in attitudes we all want? (For further information on the relationship between time and change, see the website of the Long Now Foundation.)

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 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 deep 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 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." But 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 President of PLAN. He invites anyone interested in exploring a sustainable agenda to end isolation and loneliness to contact him at aetmanski@plan.ca

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