“The human family is the unit of society. The family, as it was ordained by our great Father, with its ties of kith and kin; with its tender associations of childhood and youth; with its ties of affection and sympathy; with its fireside, its stable and its domestic altar — there is the place for the early education of the child. His instruction may be had in school; his heart and character should be developed and molded at home…
We should be cautious about establishing such artificial communities, or those approaching them in character, for any children and youth; but more especially should we avoid them for those who have natural infirmities, or any marked peculiarity of mental organization…
They depend more than ordinary persons do for their happiness and for their support upon the ties of kindred, of friendship, and of neighborhood. All these, therefore, ought to be nourished and strengthened during childhood and youth, for it is then, and then only, that they take such deep root as to become strong, and life-lasting… The home of the blind and of the mute should be his native town or village; there, if possible, he should live during childhood and youth; there he should form his friendships; there, if he comes to need special aid, it will be given most readily and fitly; and there his old age will be cherished.
Beware how you needlessly sever any of those ties of family, of friendship, of neighborhood, during the period of their strongest growth, lest you make a homeless man, a wanderer and a stranger. Especially beware how you cause him to neglect forming early relations and affection with those whose sympathy and friendship will be most important to him during life.”
–Samuel Gridley Howe, 1866
In 1832, Samuel Gridley Howe opened the Perkins Institution and Massachusetts Asylum, one of the first schools for the blind in the United States of America. He went on to found many similar institutions throughout the country, and eventually founded the Massachusetts School for Idiot and Feeble-Minded Youth in 1848.
His work was popular with the community, who started arguing that people with disabilities should live there permanently, delegating their responsibility of inclusion and universal belonging to him and his colleagues.
Through his hope, commitment and care, he had accidentally sprung a trap, leading people with disabilities to a social dead end that continues, nearly 200 years later.
To his credit, once he saw the outcomes of what he had created, he offered the preceding quote, warning history off of his life’s work. His words shocked his audience, and weren’t heeded, and the model he developed dominates the lives of people with intellectual and developmental disabilities to this day.
When I was a kid, my father would take us hiking. He’d always remind us at the start of each trail to never pick flowers or mushrooms.
“You never know if it’s the last one,” he’d say.
In his own way, dad was helping us understand our impact on the lives of the living things around us. It’s a lesson that stays with me today, as I always try to turn off the lights, compost, recycle, and of course, appreciate the beauty of nature carefully.
Dad was ahead of his time. Today, we hear about measuring our “carbon footprint,” a way of looking at the literal impact of our life on the environment.
I was late in translating these lessons to my work in “human services.” I was 12 years into my career before I came to fully understand how my work impacted the lives of the people I was supporting.
People with disabilities, when they were centered around me, had mostly safe and fun experiences, but I was part of a pattern that crowded out cultivation of their own community connections. That left them, in a sense, worse off socially. Pervasive isolation was an experience nearly everyone described.
I had thought that my work was better. In a sense, it was. It was less overtly brutal than the asylums and institutions of the 1900’s. As I noticed the patterns, though, it was the same: A bunch of people with disabilities in a building, surrounded by staff, without many neighbors and friends in their lives. People who had dreams, gifts, and a purpose in our world that went unrealized. Relationships severed, as Gridley Howe had warned, before they ever had a chance to grow into the safety of affection, camaraderie or love.
It’s hard to describe this historical similarity. People like to pretend that things are just fine. But they’re not.
This cartoon, which I borrowed from David Wetherow’s 1992 “Whole Community Catalog,” seems to get at the point better than anything:
As I wrestled with this reality, I had to pivot over and over, running up against the institutional impulses that were, and still are, deeply seated in my thinking, and in the designs of the disability service system, and the collective mindsets of our entire society.
Noticing the underlying similarities between the experiences of people with disabilities in the 2000’s and people with disabilities from the previous century was so helpful.
Over time, I shifted my work and helped a beauty emerge that centered a person and their family and community around each other, rather than my work.
It’s not perfect, but it’s better than just replaying the script of my ancestors in this work, and watching people with disabilities and their families continue to struggle in a society that says it wants to help.
As I lived into that work, I noticed a similarity between how I thought about my approach to the work of supporting people with disabilities, and the advice my father had given to us about how to approach the gifts of the natural world around us: Be careful. Preserve what is already good there without disturbing or destroying it. Hold respect at the top of your thinking.
I started to call this way of thinking “institutional humility.”
It was a great way to help me remember that yes, I was indeed running an institution, even if it was a smaller, more palatable, modern version of one. And it helped me keep in mind that the biggest similarity in mindsets I shared with my ancestors that ran the old big scary asylums was a form of expert arrogance.
The people who ran the institutions were attempting to help people with disabilities with their buildings, staff and programs.
What they actually created, though, was a giant institutional-sized hole in peoples’ lives. People spent decades in the old institutions, and when they closed, they left with nothing much to fill it.
The remedy to an institutional-sized hole, of course, had to be institutional-sized as well. We invented so many fixes: Therapies of all kinds, interventions and services for home, for work, for school, and in Starfire’s case, for experiences in the community, vacations, entertainment and volunteering.
It was a great BIG try to solve a great BIG problem we had created with more tools and help.
The problem, though, captured in the “An Institution is an institution is an institution” cartoon above, though, was that we now had people who had not grown up in institutions.
I’m not suggesting they should have. But what I noticed was that the tools invented to fill an institutional-sized hole in someone’s life were also being applied to people who had a different experience.
For people who grew up in communities with their families, the help they needed was different than what people who had spent 60 years in an asylum needed.
In a sense, the help they needed living outside the institution was just as important, but shaped in a new way.
But they were being offered the same services and supports.
I often wondered: Is this why people with disabilities are still lonely? Because our tools are crowding out community?
I would be giving our system way too much blame and way too much credit if I thought that was the only factor. After all, the social rejection and discrimination people with disabilities face seems to never end, and always comes in new forms. But I do think we are using the wrong approach in our systems. And I do think our approach is contributing to people who didn’t live in institutions experiencing similar life outcomes to people who did.
Over the past 15 years, I’ve studied institutions, visited them, and heard from survivors. I’ve read books about them and watched documentaries and dramatized depictions of them. I’ve noticed the historical parallels to our modern system, and have worked every day to find new ways to unthink, rethink, and break the hold institutional thinking has had on the lives of people with disabilities. It’s what design-thinkers call a “wicked” problem, in every sense of the word. Once one thing gets fixed, other problems cascade around it. We need a complete rehaul.
I was recently at a disability conference and attended a session with two presenters. My colleagues at Starfire were the second presenters. They were introducing the results of a pilot project called “Inclusion Seekers,” where we were attempting to invite the general public into going beyond voting, volunteering and donating as they primary ways of engaging with “disability.”
The approach is to help everyday neighbors to know
one.
single.
person.
with a disability in some natural way as part of their neighborhood, school, hobby, family, work or place of faith.
We had developed some terrific partnerships with people with disabilities, families, service workers and community members who had led the charge with our support.
The first presenter was an artist who also had a disability. The artist was going to talk about their creations and how they had taught others about art.
But that artist surprised everyone in the room by starting with a story about their life in an institution.
Details were left out, but that artist’s quotes told us all we needed to know:
“I was sent to an institution, and I’m here to tell you, if you are thinking about sending your loved one to an institution, don’t do it. Bad things happen to people in institutions. Please don’t ever send anyone you love to an institution.”
It was that short.
The room was so quiet.
The artist went right into the story of how they had used their art to live a real, meaningful life, and helped others so the same.
The audience asked the artist a few questions about the art, but no one mentioned the warning.
No one was talking about what this person has just borne witness to.
After that artist was done, my colleagues presented the beautiful outcomes of their work with the people who had helped make it happen.
I, however, kept thinking about what that artist had said. I couldn’t shake it. The juxtaposition between the artist’s warning about sending people to institutions and the “Inclusion Seekers” story was jarring.
I thought back to an experience I had at church. A group of parishioners were studying aspects of the world that called for a faithful response. One of them invited a nun who was leading a group dedicated to abolishing the death penalty. I don’t remember all she said, but I can clearly recall her teaching how we were all responsible in making the death penalty possible.
“Do you know why we say ‘Not in my name’ at out protests and vigils?” she asked.
None of us knew.
“Well,” she said, “When the State of Ohio puts someone to death, the death certificate lists the cause of death as ‘Homicide, in the name of the people of the State of Ohio.’”
We all sat quietly, considering our complicity.
By proclaiming that the death penalty wasn’t being done “in our name,” death penalty abolitionists were admitting their contribution to the problem, even though their participation in it was compulsory through taxes and their representation by elected officials who furthered laws they disagreed with.
“Not in my name.”
It was over 15 years since I’d heard those words, but they came to mind as I listened to an artist with a disability warn us about the horrible things that happened to people “in our name,” as the people of the State of Ohio.
Our tax dollars has gone to institutionalize that artist, making all that happened to them possible.
And it struck me that our tax dollars had also gone make Starfire’s work possible. The service workers trying a new approach, supporting the people with disabilities and their families in creating experiences that had a different shape than the institutions and connected them to their neighbors. All of that was also done “in our name” as taxpayers in Ohio.
There is a different way to think about how to go about righting a wrong. It’s called “Restorative Justice.” Mostly, I hear about it in situations where someone has committed a crime or offense of some sort. Instead of sending someone to jail, giving out fines, putting a kid in timeout or spanking or suspending them from school – the person who did the wrong has a plan developed by which they make it right, and also learns responsibility for their actions and empathy for others. The goal is to help heal all parties and possibly lead to a better future state than if a more traditional form of punishment was involved.
One official definition involves these key principles and practices:
• Accountability: Offenders are encouraged to take responsibility for their actions and understand the impact of their behavior on the victim and the community.
• Repair and Reconciliation: Focus is on repairing the harm caused by the wrongdoing and promoting reconciliation between the victim, offender, and community.
• Community Involvement: The role of the community is emphasized in addressing harm and supporting victims and offenders.
• Dialogue and Communication: Conversations and dialogue are at the core, allowing all parties to share their perspectives and work towards a solution.
• Voluntary Participation: All parties in the process willingly take part in it, including the victim and offender.
• Flexibility: Adapting the approach to different situations and communities.
It’s an interesting approach to helping heal the wounds we inflict on each other, and on ourselves.
But what If the perpetrators and victims are long gone? What if the people doing the harm did it in the name of the people of the state we live in? What if we didn’t even know the harm was being done?
I keep thinking about restorative justice, and it seems to hinge on one key idea: The thing that created the wound could never be what heals it, or as Audre Lorde puts it, “The master’s tools will never dismantle the master’s house.”
The opposites of restorative justice principles lead to the hurts: isolation, miscommunication, inflicted force, selfish perspective, disconnection.
So how could we ever expect to heal the wounds of our institutional ancestors with the tools and thinking of the institution?
We can look to the principles of restorative justice for our answers. We have to be flexilbe, create the conditions where people can choose their way forward and find each other. We have to help people keep knowing each other through conversation, and be involved in each other’s lives as members of the general public. We have to help people connect and act together.
This would be the most significant innovation our system has ever taken on. We’d take ourselves out of the center of the disability story, which we never should have taken over in the first place.
We have to give up the fantasy that we can manufacture or institutionalize belonging, and support real life, which is made up of people in families and neighborhoods, even though it’s messy and unpredictable and unbillable and uncontrollable and grows in unique and wild ways throughout the life of each and every person with a disability.
How can we, as people working in the business of helping other human beings, orient ourselves out of the spotlight, and center people in a way that frees them up to live their life in their own way?
It’s not always easy, and it takes a little practice, but I’ve found that “institutional humility” offers a helpful reminder. It reminds me that our work is to be more careful, noticing when we are overstepping our bounds. It helps me remember that part of our work is to rectify an historical arrogance, and avoiding the hurts that so many continue to experience. It draws my attention to the power beyond our payroll that might take decades of investment, nudging and nurturing to flourish.
In short, “institutional humility” is an organization’s internal awareness of its own impact on the community lives of the people it supports, and the correlating actions it may or may not take in consideration of that awareness.
It’s tempting to take the easier road and use the old institutional toolbox. After all, there are hurts that need quick fixes, and we are all desperate for a salve to deeply rooted troubles like the dehumanization endemic in how society approaches disability.
And we are great at marketing and need to fund the machine, with a community that, thanks to our institutional approach, imagines themselves inept at inclusion and largely has no idea how to actually get to know a person with a disability beyond the support they give the service system.
So our industry is letting the community easily go along, while horrible outcomes are still emerging “in their name.”
We need new approaches and new colleagues, and new ways of thinking.
It can feel overwhelming and impossible, and it is, if we take an institutional “solve the problems now” approach. But if we think of ourselves as innovators, employing a “restorative justice” approach with “institutional humility,” we can rest in the peace of knowing that long work lasts, and opportunity to practice anew is reborn each morning.
When I forget, I return to a simple rhyming mantra:
Prefer, Defer, Refer.
- Can I sincerely prefer the community to the system of services and experts? Can I remember that life has to be lived in a community, outside of my offices, meetings and programs? Can I hold onto the belief that community will be as good, or possibly better than a life of services? Who will be there when my staff leaves?
- How do I defer to the community as the experts in knowing and caring for each other? How can my work reinforce that, rather than take over? How can I remind community members of their wisdom, capacity and responsibility?
- Will I remember to refer to the community first, knowing there are people who can help each other grow, heal and live? Can I look to them from the get-go, rather than start with my service interventions? Do I keep in mind that most problems – needing a job or a place to live, having a friend to listen, getting welcomed – are ordinary problems that people without disabilities solve everywhere every day? Are staff unnecessarily sending people further into institutional stories and lives?
I know my work is still important and good, but these three questions give me a chance to pause and think about my “institutional footprint” on someone’s life. They help me stay humble and give room for communities to do what they do best.
And most importantly, I get to work on correcting an historic wrong, making it right and keeping my work from deepening the trouble people with disabilities face.
Acknowledging the trouble is the first step.
When that artist finished their presentation, they were asked questions about art, but none about their warning about institutions.
When my colleagues finished telling their story, I knew I had to say something, both to acknowledge the wound we’d witnessed, and to draw a bright line between the two stories and show how something more, and better was possible.
I hesitated to raise my hand, thinking it might just all be too much.
But the emcee asked if anyone had anything to say, and up went my hand.
I apologized to that artist on behalf of all the taxpayers of Ohio, of which I was one. And offered Starfire’s story and work as a start at making the wrongs they experienced right.
A small, careful step in a new direction, and an invitation to all of us to consider our own role in restoring justice in our work, lives and communities.
I can think of no better way to honor the people we support than meeting their creativity with our own.
Cincibility 