Ideas, Resources & Reflections
Resource: "Beautiful Dreamers",1990, a film starring Rip Torn and Colm Feore,based on a true story of how the poet Walt Whitman helped to make positive changes to the local institution in London, Ontario in the late 1800's. Check Amazon for VHS (worth the search)
This page was originally intended as a place to offer information about helpful books, CD's and DVD's...and we will be doing that.
However, perhaps, in part, because I recently saw "Julie and Julia" (loved the Meryl Streep/Stanley Tucci Paris scenes especially)and partly because I can't locate,at the moment, the article I had planned to share here, I have decided to rethink this first entry on our new website.
I realize that I want these notes to include a little more of the personal, since I believe so strongly that we are the most helpful (and the most interesting) to others when we bring our whole selves to what we are doing.So I hope that each time I write here (every couple of weeks is my intent) to mention just a little of what is influencing my life and my work at the moment and also to include a resource or article that I believe you may find useful and inspiring.
This summer I have been trying to resist the lure of the beach and lazy days to complete work on my new book, Meeting the Challenge: A Guide to Respectful, Effective Planning, Advocacy & Support with People Who Have Puzzling Behaviour. A long title, I know, and it has been a long endeavour to share what I have been learning about this for so many years.
Writing it has often been an emotional experience as well, thinking about the numerous people who have encountered great difficulties due to ill-advised treatment as much as to their original problems.The book has also called up (in a more intentional way) many recollections of Herb Lovett, to whom the work is dedicated, along with my friend, Lisa.
Herb was my good friend, my colleague, and a mentor in thinking about people with challenging behaviour. He was a true pioneer, who helped many let go of their need to control,and develop a real committment to trying to learn and understand from the person who has the problem.
The film,"Beautiful Dreamers", tells the story of two other pioneers...Walt Whitman and Maurice Bucke; it is based on true events, that took place right here in London, Ontario, where I live. So from several perspectives, talking about "Beautiful Dreamers" feels very fitting for this first conversation.
The film takes place in 1883 when Maurice Bucke, the new director of London's Asylum for Idiots ( a "scientific" term meant to convey a category of "intelligence", or lack thereof) attends a Superintendants Conference in Philadelphia.He is there to learn about new approaches and also to present his paper on "The Symapthetic Nervous System." In an age where the latest methods were shock, restraints, alcohol for sedation and surgical removal of women's ovaries to "calm down their hysteria", Bucke had the revolutionary idea of trying to connect emotionally with people who had mental and developmental challenges.
He says, " I believe that feeling precedes thinking, and if we can just reach their feelings we can improve the quality of their lives, don't you think?"
His thoughts aren't very well received among conference participants, who are much more enamoured of restraint chairs and pickled ovaries displayed in jars. But one member of the audience, who has asked how the gadgetry being shown will improve anyone's life,applauds wildly for Bucke. He is Walt Whitman and has come to the conference to see if any ideas might be of help to his brother, Eddie. Eddie has some sort of intellectual disability and the two brothers live together.
Bucke and Whitman develop a very close relationship and the poet winds up accepting an invitation to come to London and see if he can help make The Asylum a bit better for those who live there.
More humane ways of treating people were introduced, including things as seemingly simple as opening the windows to let in air and sunshine, offering music and dance and some athletics. The film ends with a demonstration cricket match between the town team (whose members have serious doubts about these new-fangled approaches) and the residents.
At one point, Bucke is meeting so much resistance from Asylum staff and the town, that he begins to doubt himself, but Whitman encourages him:"You're not a quack...you're a hero! Modesty never healed one person on this earth"
The credits at the end of the film include a note that within a short time of Whitman's visit all restraints had been removed from The Asylum.
The current London Regional Mental Health Care is built on the grounds of the former Asylum (now very much within the city limits). They offer tours of the remains of the old buildings,including some of the "devices" once thought to "cure" people. This equiment, along with parts of the film, offer shocking images of what was done to peope in the name of treatment, and both are good reminders that we should stay wary of how easily technology can be abused and abuse,even with good intent.
The film also provides encouragement, for me, that we can make a difference, that it is not only okay, but at times absolutely necessary to share our voice, even if it is not in tune with popular practices and beliefs.Rip Torn's Whitman shows so much strength and bravery that I become inspired to be a bit more courageous myself.
His mesage invites us to believe in ourselves and our power to create change:
"Whoever you are, come forth,
or man or woman
You shall not stay sleeping
there in the house
though you built it
or it was built for you.
Out of the dark confinement
out from behind the dark screen.
These are the days
that must happen to you."
Leaves of Grass
See you next time,
Exploring Helpful Help
A Review of How Can I Help? Stories and Reflections on Service by Ram Dass and Paul Gorman, New York: Alfred A.Knopf, 1985
I’m not sure if this is the most important book I have ever read to help me think about the work I do and others do, to support people who have a disability, but it probably is. There are so many things to consider in trying to be present with people as they explore their dreams and options for the life they most want ...voice, power, rights, community, deep listening, creativity, respect, connecting, gifts, stories, relationships...all of these and many others are parts of the picture for me. But because we are offering help...as professionals and families and friends... the nature of how we help seems to me one of the foundation pieces that holds everything together.
I started exploring the idea of what is helpful help and what is not helpful help because of Herb Lovett’s questions around people’s good reasons for behaving in challenging ways. “When had we done something similar?” “What was our ‘good reason’ at the time?” “What helped us or what do we wish had been offered as help?” These powerful questions invited people to reframe the focus from fixing and controlling behaviour to understanding it through our own experience. The process encouraged empathy and diminished the “us and them” mentality so frequently present in our attempts to provide assistance.
I thought of this approach as transferable to other aspects of support, so when I do training on person centered planning I ask people to think of a time when others were involved in planning something with/for them, such as a wedding, a family event, a major purchase. And then I request that they jot down what was helpful about others’ involvement and what was not. The answers are not surprising...helpful includes being listened to, people pitching in as needed, offering suggestions without expectation of their being followed, sharing similar experiences. Not helpful may be when others discounted your opinion, took over, didn’t follow through, or gave unwanted advice.
Reflecting on what our experience of help has been...remembering that all of it is well intentioned but much of it misses the mark, and that we are put in a vulnerable position whenever we rely on others, is a powerful way to re-evaluate how we are offering assistance. Especially when we consider that most people we are helping have much less choice regarding who helps them and how.
I don’t remember now where I bought How Can I Help?...I know it was many years ago...pre-Amazon. The title likely appealed and several good friends were big fans of other works by Ram Dass. Like many other books I buy, I probably didn’t start reading it right away, but when I did, I finished it within 24 hours . The stories, by people in a variety of helping professions...doctors, nurses, social workers, clergy, peace activists, third world development workers and many others, share lessons learned that are reflected by the Chapter headings: Natural Compassion; Who’s Helping?; Suffering; The Listening Mind; Helping Prison; The Way of Social Action; Burnout; and Reprise: Walking Each Other Home.
In addition to the stories themselves and the learnings shared by those relating their experiences, editors Ram Dass and Paul Gorman have many powerful observations about the nature of true help:
“This goes far beyond programs and processes. It goes deeper into the real meaning of support, which is to nurture and sustain....It’s a lot of listening, talking, modeling, guiding, hand-holding, resource sharing, story-telling, crying, and celebrating. It’s frequently maddening, sometimes thrilling, usually draining, but never boring.”
One of the important points in the book relates to what role we assume as a “helper”...how we see ourselves. This lesson is reflected by a story shared by a doctor who recalls a patient he met when he was an intern, who helped him rethink his professional identity. The patient was an African American man in his 60’s ,who was seriously ill. One night the intern visited the man alone instead of just seeing him as part of a team during rounds.
The man asked the intern, “Who you?”...a question that changed his life. “I started to say, ‘Well, I’m Doctor...and then I just stopped cold. It’s hard to describe...all kinds of answers to his question started to go through my head. They all seemed true but they all seemed less than true. ‘Yeah, I’m this or I’m that...and also....but not just...and that’s not the while picture; the whole picture is...’ The thought process was something like that. Nothing remotely like that had ever happened to me. The guy gave me a grin and said, ‘Nice to meet you’. He died a few days later. And I carry him around today. I think of him now and again in the midst of my rounds. A particular moment or particular patient brings him back. ‘Who you?’ For years I’d trained to be a physician , and I almost got lost in it. This man took away my degree and then gave it back to me. I’ll never forget that”.
Another story relating the problem of professional distancing and the courage it requires to remove those barriers is recounted by a paediatric nurse:
“It was the use of machines and extraordinary medical measures that moved several of us to see how much distance we were putting between ourselves and the infants. Even if the machines weren’t there, though, there was the tendency to keep it impersonal, to keep your distance, and you knew it wasn’t any good for the children...for the children least of all. So a group of us began to talk about it, to open up to our feelings, to decide to be with the children more, and when it got too hard and we’d break down, we’d support each other and talk it over. What happened was the more we opened up, it just became natural that we began this new practice of holding infants when the time came for them to die. It wasn’t a decision as much as something we’d become ready to do. So at the end we’d take them off the monitors and into our arms in a rocker. And we’d sit with them in their final moments. It tears you apart because holding them , sometimes you can feel them go. And the death itself is different. On the machines, its monitored as brain death. In your arms, it’s the heart...”
Another important point shared by helpers is about mindfulness and staying open to what someone may really need in the moment, rather than imposing our bright and shiny theories of what we believe will solve and save. My favourite story in the book is shared by an American living in Japan when he was in his early twenties.
One day a very drunken, belligerent labourer boarded a commuter train the American was on, cursing and yelling and hitting out at a young woman holding a baby. The blow sent the woman reeling, somehow miraculously missing the infant. Continuing to threaten the other passengers, the labourer next tried to rip a metal pole out of the center of the car. The American was a long time student of Akido, and although that practice forbids fighting in general, he thought this would be a legitimate use of that skill. After all, people on the train needed defending. So he taunted the drunk a bit, and just as a fight between the two would have begun, an old Japanese man called out, “Hey! Come here!”
The labourer stopped and went over to the old man, who continued to beam at him:“ ‘Whatcha been drinking?’ he asked, his eyes sparkling with interest. ‘I been drinkin sake’, the labourer bellowed back, and it’s none of your business!’
‘Oh, that’s wonderful, absolutely wonderful,’ the old man said. ‘You see, I love sake too. Every night , me and my wife(she’s seventy-six, you know) we warm up a little bottle of sake and take it out into the garden and we sit on an old wooden bench. We watch the sun go down and we look to see how our persimmon tree is doing. My great-grandfather planted that tree, and we worry about whether it will recover from the ice storms we had last winter. Our tree has done better than I expected, though, especially when you consider the poor quality of the soil. It is gratifying to watch when we take our sake and go out to enjoy the evening...even when it rains.’
He looked up at the labourer, his eyes twinkling. As he struggled to follow the old man’s conversation , the drunk’s face began to soften. His fists slowly unclenched. ‘Yeah,’, he said, ‘I love persimmons too.’ His voice trailed off. ‘Yes’, said the old man smiling, ‘and I’m sure you have a wonderful wife.’
‘No’, replied the labourer. ‘My wife died.’ Very gently, swaying with the motion of the train, the big man began to sob. ‘I don’t got no wife, I don’t got no home, I don’t got no job. I’m so ashamed of myself.’
Tears rolled down his cheeks; a spasm of despair rippled through his body. Standing there in my well scrubbed youthful innocence, my make this world safe for democracy righteousness, I suddenly felt dirtier than he was. The train arrived at my stop. As the doors opened, I heard the old man cluck sympathetically. ‘My, my’, he said. , ‘that is a difficult predicament. Sit down here and tell me about it.’
I turned my head for one last look. The labourer was sprawled on the seat, his head in the old man’s lap. The old man was softly stroking the filthy, matted hair.
As the train pulled away, I sat down on a bench. What I had wanted to do with muscle had been accomplished with kind words. I had just seen Akido in combat, and the essence of it was love. I would have to practice the art with an entirely different spirit. It would be a long time before I could speak about the resolution of conflict.”
Last year I came across the term, “sanctuary harm” in Bruce Anderson’s CD, Our Door is Open. Bruce was quoting Phillip Hallie, who outlines three characteristics of what he calls institutional cruelty in his book by the same name:
1. Unintentionally harmful attempts at help are embedded into the regular workings of the group or organization
2. Those harmful features of attempts to help operate on the “edge of awareness” of the helpers...they know that these go on but it is not brought into full consciousness
3. There is a power differential between those relying on help and those giving it
Bruce Anderson,Our Door is Open,quoting Phillip Hallie, Institutional Cruelty
Bruce shares the technical definition of sanctuary harm as any acts within a helping regimen that create fear, feelings of helplessness, humiliation or loss of trust in those attempting to help. These are not usually intentional but we need to bring our awareness...and our courage...to the foreground to see where this may be present in our efforts to support.
Those of us who are paid to offer help do so for a variety of reasons, most of them from a genuine wish to make a positive difference. And overall I think we do. But it is easy to fall into acting in automatic ways of being with people and being lulled into accepting stereotypes of what constitutes help. We all need reminders to re-visit what we are doing and check in with ourselves and the people we hope we are assisting, to see if our efforts are truly what they want and need. Reading and discussing stories from How Can I Help? is one very powerful way to deepen our understanding about the true meaning of service:
“Service not only reveals a larger vision of life, but steadily moves us along and supports us in our efforts to realize this vision. Each time we seek to respond to appeals for help we are being shown where we must grow in our sense of unity and what inner resources we can call upon to do so. We are constantly given, for example, the chance to experience the inherent generosity of our heart. Each time this happens , our faith in that part of ourselves which is intimately related to the rest of the universe is strengthened. So too each act of caring with a desire to grow, we also meet our fears and resistances....but with the opportunity to see them for what they are, and, in so doing, to loosen their hold and ultimately to relinquish them.
On the path of service , then, we are constantly given feedback which helps us along the greater journey of awakening...To the question, ‘How can I help?’ we now see the possibility of a deeper answer than we might once have experienced. We can, of course, help through all we do. But at the deepest level we help through who we are. We help, that is, by appreciating the connection between service and our own progress on the journey of awakening into a fuller sense of unity. We work on ourselves, then, in order to help others,. And we help others as a vehicle for working on ourselves.
Perhaps, finally, we can trust a little more...both ourselves and the process. We have much more to offer than we may realize. All we have to do is ask, ‘How can I help?’ with an open heart, and then really listen.”
How Can I Help? is available on Amazon for about 10.95 or less. This is a book with stories and insights that could be used for discussion by Circles, at Team Meetings, and in a variety of circumstances where paid and unpaid support is offered. I hope and believe that you will love this book as much as I do.