Who’s in Your Life? Rethinking the Social Story of Disability: A Book Review by Peter Block

Belonging is on all of our minds these days. There is a new book that faces the fact that many of our services to vulnerable people unintentionally feed their isolation.

The author is Tim Vogt and the title is “Who’s in Your Life? Rethinking the Social Story of Disability.”

What is compelling about this book is the way the author details the challenges he faces in ending isolation. One insight is that belonging and connection occur when we return this aspect of well-being to the control of vulnerable people and their families.

I am a friend of the author and was personally part of the early days of his story. Over a period of a few months, I joined John Knight and Judith Snow for several workshops and conversations with Tim’s organization, Starfire.

John, for decades, had questioned whether institutions are capable of care. He is author of the book “The Careless Society: Community and Its Counterfeits.”

Judith, a quadriplegic and Canadian citizen, was an author and  national voice for putting funding and accountability for well-being of the disabled in the hands of the person and the family instead of the hands of service providers.

I had no idea until I read his book how seriously Tim took those early conversations with John and Judith. He chronicles how he began a major transformation in the direction of ending the isolation of the people he had given his life to serving.

 

A Story of Transformation

Tim was executive director of Starfire, a celebrated organization in Cincinnati that serves people with disabilities.

One interesting aspect of the book is that it is about an institutional transformation initiated from its chief executive. Quite rare.

It also makes clear how personal awakening and organization transformation need each other. When we are awakened, many of us leave what we are doing and pursue our future elsewhere. Not Tim.

He describes what is required of himself and his organization when he shifts his context and thinking. In this case, the shift in context is that ending the isolation of vulnerable people might be more important than creating programs to help them build the skills and capacity to better deal with their condition.

 

Facing Our Part in Producing Isolation

Tim’s book centers on people given the label “disabled,” but it applies to all institutions that care for the vulnerability of others. People who are blind, economically isolated, addicted, returning offenders, mentally challenged, victims of crimes, school dropouts.

Tim chose to face the reality that offering programs to disabled people to help them function in the larger world misses a fundamental aspect of their well-being: the importance of being connected with people who are not disabled. Add to this the importance of being treated as people who are much larger than what they are not.

In the introduction to the book, he writes:

I explore the damage that grouping people into programs for those with disabilities causes to their lives. Some argue that people with disabilities and their families have the right to “choose” these kinds of groups.

But that choice is largely forced upon them by systems that offer limited options. Having to accept segregation as a condition for support is unacceptable, and we can do better. That’s the entire gist of this book. (p 3)

It is a common conversation about how institutions should change to better serve the needs of the vulnerable people in their domain. Most efforts at social change focus on change that does not begin with the changemaker and the way they engage the world in order to serve and to make a living.

Authentic transformation requires something more, which is to own clearly our own personal contribution to the problems we see. Tim is courageously honest about his own role as the executive director of Starfire:

I was facing a hard truth about myself. Our programs were full of people with disabilities.… But was I just taking advantage of their loneliness, malleability, and cognitive disabilities to feel good about myself and make money? (p 39)

 

Isolating Care

Part of Tim’s realization of the institution’s role in creating isolation in the midst of services was crystalized by a study by Jack Pealer, a well-respected Ohio researcher and activist in the disability domain. Pealer asked 51 people with disabilities the question “Who’s in your life?” and it is his findings Tim speaks to here:     

On average, he found that each person had …

8 family members,

25 paid staff people,

2 friends without disabilities,

68 other people with disabilities in their life.

It was absolutely the pattern of the world I worked in: some paid helpers like me took care of people with disabilities in our programs and our beautiful recently-new building.

It looked like a special education classroom.

It looked like an outing… a day program…or a workshop… or a group home.

It looked like Starfire.

It wasn’t just me profiting off of people with disabilities and their families. This was an industry. (pp 40–41)

The implications of his insight put into question the way we have structured our institutions of charity, philanthropy, social responsibility. People choose a career of caring and compassion. Institutions exist for the same purpose. This book does not question the sincerity of care and social responsibility in our current way of thinking and investing. It does, however, introduce a different conversation, which is might there be a more powerful way of having an impact in serving those who are vulnerable. In this case, the vulnerable are disabled people. The same question applies to our investment in all who struggle and need something more.

 

Reform and Transformation

Service organizations and foundations are traditionally focused on programs: more education, job training, building skills in managing life. Tim questions this approach to serving the disabled:

Nearly 70% of their relationships were with other disabled people. Only 2% of their relationships were with people who weren’t disabled and weren’t paid to be there.

They were living their entire lives in this pattern. And all their families felt the same loneliness, pressure, and fear. …  It dawned on me that even our best efforts were just a shadow of what people with disabilities and their families really needed. (p 42)

It wasn’t people’s disability that was preventing them from having friends or jobs. It was being treated as a bundle of problems and then held at arm’s length from true belonging. (p 85)

Most social service organizations are organized along a traditional strategy for success: smart funding, good management of the delivery system, know the path forward, measure carefully, and look for ways to grow. This mindset is a close reflection of the business perspective held by many of their board members. Tim speaks to the appeal of the current offerings:

People with disabilities and their families were telling me how happy they were in their satisfaction surveys. And donors were giving hundreds of thousands of dollars each year. I had 50 applications for every job opening, and people were clamoring to work for me. How could that be wrong? (p 43)

Tim came to believe that ending the isolation of the disabled was a greater service than designing skill-building programs and providing special events like bowling trips. How do you pursue the transformation in the face of the demand for what now exists?

He began by turning his attention to what alternatives could be offered. As was evident, he had to face the fact that the people served, those with a disability and their families, were heavily committed to the programming. And that this programming was what Starfire’s funding supported.

What to do? The natural instinct when facing a problem is to do better planning, bring in a consultant, look for other places that seem to have answered the question. Call for reform. And strive to do this quickly, for time is thought to be of the essence.

 

Friendship as a Strategic Alternative to Programming

The typical concern with a clear strategy, speed, and scale was not the case for Tim and his allies at Starfire. They took the time to look for small opportunities to discover what the path to reducing isolation might be. What Tim and the Starfire staff did is the essence of real transformation: seemingly slow, small insights which give a hint of possible future major effects. He says:

I was focusing so hard on the individual person with a disability becoming better versions of themselves, I never considered that the most critical part of their life and personhood was defined by their connections to the people around them. (p 81)

It became obvious: inclusion needs more than one address. (p 159)

Eventually we launched over 160 projects in Cincinnati. They were all unique and personal. But the projects had a few things in common.

They all brought people  to work alongside each other, and to work alongside a person with a disability. They were all a catalyst for friendship.” (pp 175–176)

Their strategy for shifting from a priority of service to one of friendship seems simple but is very difficult. It confronts the professional with the question of what is their unique contribution to the people they care about. If it is not to apply the skills of training and counseling they have spent  so much time developing, then what use are they? Simply bringing people together and helping them value each other? Having wider friendships for the disabled be the outcome of their work?

Tim and his allies looked for small experiments in ways the staff might build personal relationships with the disabled Starfire people and find projects in the community outside the programs they delivered. They brought in people from the community to teach classes in areas of interest, things not having anything to do with disability. They found ways to be friends with people in ways that had not seemed important or possible before. They funded projects where families would work to make their neighborhood better, the only requirement being that three nearby families would be partners.

What set Starfire apart from most others is that scale or customer satisfaction with programs were not their measures of success. The idea was simply including and connecting their participants with people that were not paid or disabled.

More and more, we learned that people would come together over anything they cared about, and there was always some way for a person with a disability to join right in. (p 175)

Each person who completed a project added an average of four new people to their life. (p 176)

 

The Challenge to the Institution and Its Culture

Even when the need and methods for transformation become clear there remain substantial implications for the organization. A staff that was hired for one kind of program development and delivery is now asked for a complete shift in orientation. It is a major shift to transition from the predictability of being a service provider –– a group of program designers and deliverers –– to the uncertainty of co-creating and organizing a unique experience for every person and family that walks through the door.

At Starfire, programs were still offered, but the design changed. Neighbors and potential friends populated the room to a much larger extent. The mission focused on pathways to friendship and ending isolation versus personal development.

Throughout the process, there was the question of whether the funders would support the shift in thinking. Also a concern about whether Board members would back Tim and the staff as they ventured into unknown territory. Every institution has some variation of a Board, people who carry oversight authority to approve the way a change in service delivery philosophy will enhance or subvert the organization’s mission. The way Tim navigated these relationships is a powerful part of the story. At some point he had to put it all on the line to really believe he and his allies could make ending isolation a major intent of the agency.

 

Friendship Matters More Than We Know   

Ending isolation now has our attention. In California, Jon A. Powell leads the Othering and Belonging Institute. Great Britain has a Minister of Loneliness. Paul Uhlig, a heart surgeon, has invented Collaborative Care and started Proximal Health, both of which recognize that being connected to each other is as important to our well-being as his surgery or any medical intervention. Along the same line, Social Prescribing is an effort where physicians, as a central part of their treatment, write a prescription for which kind of volunteer involvement would be best for the health of their patient. These are important examples of addressing isolation because they represent institutional forms of care, and yet they operate in a non-institutional way.

Besides being a reassuring story of transformation, “Who’s in Your Life?” creates a proof of concept for those who seek an alternative future for the social service efforts in our communities. We need institutions and their capacity for productive organized effort and creating growth. This book offers a way for an institution to convene and create belonging that is in the hands of neighbors and citizens. It deals with the question of raising funding to build the social capital of neighbors being connected, trusting each other, and making a place better. And it shows what this looks like when we value each individual’s gifts, regardless of what labels we once used to call each other. “Who’s In Your Life?” inverts our thinking about much of what we once thought was useful.

Finally, beyond rethinking the nature of institutionalized service, this book points to the larger transformation, which is to see the essential place that friendship plays in the well-being of the place where we live. This is the ultimate revolution, the possibility of neighbors being friends and welcoming strangers aside from professional and policy and program intervention. Friends to those on the margin who are seen for their gifts, not their vulnerabilities.

Friends are people who know, care, respect, and have a commitment to each other through time. And who do this for its own sake. Friends in this sense is the opposite of finding like-minded people, for that is the source of our isolation.  What has been created in this instance gives form to our commitment to bring belonging into a way of being.

Tim Vogt. “Who’s in Your Life? Rethinking the Social Story of Disability.” Toronto, ON: Inclusion Press, 2024. www.inclusion.com