Tag Archives: Health
Health is a Neighborhood Issue
Jackie Reed
Quick Summary:
Jackie Reed embodies the community embedded in efforts such as Every Block a Village and Westside Health Authority. She explains how health has become “a focus on problems” rather than on the people having them, and how she has helped create a new kind of health that offers fulfillment.
For ten years following the 2010 publication of their book The Abundant Community: Awakening the Power of Families and Neighborhoods, John and Peter hosted conversations with neighborhood activists on their community-building work. All their ideas are still at work and continue to be influential for anyone engaged in creating the future in the present. The transcript here has been edited for length and clarity.
Health Is a Neighborhood Issue:
Conversation with Jackie Reed
September 9, 2014
John McKnight: Welcome everybody. Today, we are joined by Jackie Reed. I’ve known Jackie for thirty or forty years and she is one of the great inventors in Chicago. Jackie, welcome and we are glad that you could be here.
I wonder if we could begin by having you give us a little background on your history and what led you to focus on the issue of health.
Jackie Reed: I grew up in Natchez, Mississippi, during a time when Natchez was segregated. I went to segregated schools and I lived in a segregated community, but we never felt poor. We had a sense of pride and dignity. Education was very important to our families. My mother had 11 years of education and my father couldn’t read or write, but they had a lot of hope and they had dreams for their children. So, we grew up with a strong sense of family and a strong sense of community. We grew up with a sense of dignity about our community and believing that we could do anything.
I am 64 years old now and so I am a child of the 50’s and 60’s. I came to Chicago when I was 18 because there weren’t many jobs down South. I was looking for a job to work that summer so I could save up money to go back to school. I was going to Alcorn State University, and it wasn’t a state school; it was a private college at the time. Then I met my husband, got married, and stayed here in Chicago. It was quite a big difference here because the people had more. The people had more, but they didn’t have a sense of sacrificing and demanding more out of themselves. It seemed to me that people were into living in the moment and having a good time. Now don’t get me wrong because I liked it. All of sudden I didn’t have to worry about school and sacrifices. I could go partying on Saturday nights and work and get paid. The guys had more money and cars. So, we could have a good time. I had a sense of freedom, but there was always something in me that said I had to prepare for my future. I had to help somebody.
In growing up in the South, we had always seen people helping each other. If somebody had chickens, then everybody had eggs. People had gardens and people could eat out of each other’s gardens. I remember my Daddy raised hogs in the country and when he would bring a hog back, we would cut that hog up and take some to our neighbors. We would take a leg to this neighbor or a shoulder to that neighbor. By the time we finished giving that hog away we only had a little bit of that hog for ourselves.
This was the way people lived and we came to understand that what people thought about us was very important. We had hope and we had a community and we had a future. They did the usual things and got into each other’s business and so forth, but people really cared about each other.
These are the values that I grew up with and the values that I came to Chicago with. This was at the time when they actually did outreach to find people who wanted to get on welfare So, people in the neighborhood would say that you could go down to the Welfare Office and tell them that you are not married and you can get a welfare check and so forth.A lot of people did that. They were working and they got dressed and went out on Friday nights and they spent money. They used bad language on the streets and they didn’t care if children were there or not.
So, I saw a breakdown of the values and the morals of the people grew up with. I know that these people had grown up with families from Mississippi, Alabama, and Arkansas just as I had, but somehow they did not have the same sense of identity and purpose and drive for that community that we had. I think that part of it was we had a clear sense of what we had to do for ourselves because the community, the white community, the power structures in the South, were so organized against the Civil Rights Movement and in Chicago it was very different. You really couldn’t tell because the Aldermen were Black and the Mayor was Mr. Daley. There was a sense that he was going to take care of you in some kind of way. There was a different level of awareness about the political structures and what was possible.
I liked Chicago and moved to the West Side. I started to work in factories, I went to school, and I paid my own tuition. I didn’t know anything about getting money to help pay tuition. I was told that I wouldn’t do well in school because I had gone to segregated schools but I didn’t find the University of Illinois to be particularly challenging. It was fine, but I didn’t feel threatened or somehow inferior there, and I did real well. I finished my degree in sociology and then I went to the University of Chicago, later on. Just basically having babies along the way (I have four children), struggling, paying bills, and trying to feel, What is my purpose, what is my sense and what can I contribute?
John: Somehow you got into the health field. Can you tell us about that?
Jackie: I started out of my church at Bethel. They were looking for a director. I had worked in practically every area of social work and I was now in the church. I had become pretty famous in the church for my social work; I had been working with children needing adoptive homes and ended up placing more children in adoptive homes than any other social worker in the state. I was finding Black families for Black children.
So, Bethel wanted me to consider being the director and so I became director of a holistic health center. John, when I was director of the health center, I was also a social worker for the pastoral counseling ministry. Many of the people who came into the health center really didn’t come with a lot of health problems. They came in with a lot of community and social problems. Like the woman who had a son who was staying at home; he was on drugs and he was stealing all the baby’s formula and selling it, or the mother whose girl is pregnant by her mother’s boyfriend. We saw a breakdown in families. The intervention was more social than medical.
So, we thought to ourselves, What is health? How do we go about creating health in this community? That was one of the things that plagued me. I went to the universities to try to get them to partner with us. One of the universities came out and they would look at what I would call the flavor of the month, such as all these girls having babies and that is one of the reasons that you have family problems, too many teenagers having babies. So, what we need to do is have more clinics in the schools that can dispense birth control.
So, when you go back to the neighborhood the neighborhood people say that is not going to work. They would say that this is giving girls permission to have sex and this is basically legitimizing their behavior and not teaching them to restrain their behavior. Not teaching young men to restrain their behavior. Where are the values and the morals? We want to teach our young people rather than just giving them a pill.
Then you have the problem of another flavor of the month, of course, which was infant mortality. We have high infant mortality –– more babies are dying in Chicago than in Costa Rica. What are we going to do about that? We will do outreach to get that young mother into the clinics. If we can get that mother into the clinics during the first trimester of her pregnancy, the babies won’t die. Then it didn’t become about the mother; it became about her womb. How can we get this womb to the doctor’s office? It was not a focus on people; it became a focus on the problems. They were going to find a quick fix for the problems, but people are more complex than a womb or they are more complex than their sexuality.
Anytime we would do something the politicians would not necessarily listen to us, because if you had a problem with drugs and drug abuse in a neighborhood, the people say we need to have more drug treatments and have something for these young men to do. Politicians would say, We are going to lock them up. So, you lock up the people on drugs. You take the womb to the hospitals so that they can be taken care of. Everything is about a problem and something that we can quick fix it with the next flavor of the month.
I just got fed up with it because people began to look for this outside quick fix to come in here and dope us up or lock us up or something. People lost their sense of what we can do for ourselves. Because the quick fix was something that was based on research, and because it was something that was more legitimate than my little idea, people lost their confidence and their ability to make a difference in their own community. They would go in there and they would listen to what a researcher had to say. The researcher would give them some incentive for coming: You come to this thing and you’re pregnant, we are going to give you some Pampers or we are going to give you a baby bed. Things like that.
That way is not really respecting people. People need respect. People need to maintain a sense of dignity and a sense that they themselves have the solution. So, I left that organization after about four years and I said, The hell with this. Every time we tried to get some program going, people would say that’s not what we need. So, let’s go hear what the people say and then, based on what the people say, we are going to put a strategy around that and work on what the people say.
That is how we started the Westside Health Authority. We say we are going to use the ideas of the people here and we are going to use their capacity to make a difference in their community. We are not going to get wrapped up in organizational interests because then you have to worry about big money and interests. We want to be an organization that people would use. We wanted to be able to get people’s ideas traversed from one point to the next point. We want to build their capacity up to care for work in their community and to make change in their own community. That’s how we really got started with the Westside Health Authority.
John: I was just wondering about the name Westside Health Authority. When they hear something called an authority, most people would think governmental. You didn’t call it the Westside Health Organization. Can you tell us why you chose the word “authority”?
Jackie: We believe that the people really are the authority on what needs to happen.
I mean, look at all the professionals and all the dollars that have been spent on the west side of Chicago, just to give you an example, in health care. The program that was supposed to reduce infant mortality, I think, had somewhere near 30 million dollars spent over a period of ten years. Then you have all the hospitals; you have five hospitals alone that probably had spent somewhere around quarter of billion dollars a year in health care and all people are doing is getting sicker and sicker.
So, we believe that the people themselves really are the authority on what needs to happen in the community. We believe that if we listen to the people and follow what they and give them an opportunity to use their ideas and to use their capacities, we would create health in a community.
Peter Block: Jackie, what you are saying is mesmerizing and thank you. What I’m interested in is what did the people say?
Jackie: We went out and knocked on doors. We got a grant from the MacArthur Foundation; they took a chance on us. I actually had gone to the MacArthur Foundation and asked them for some money to hire some people from the community so they could go out into the neighborhood. We asked people, What is health and what is working in the community? We wanted to build on that rather than on what’s not working. The MacArthur Foundation said that we had to go the university and get somebody from the university to help us.
I went to the university and I told them that we are the “authority” –– we are the boss, and if they were willing to work for us then we would give them part of our grant. They were willing. I had graduated from the university and had some friends there. We hired a woman from the university to come and work with us. She started to work with us around 1990 and she just retired, actually about six months ago; she ended up quitting the university and working for us.
So, we asked the questions in the community. We trained about 15 people from the neighborhood to go out and ask their neighbors, What did they think would work in the community? What is health and how can we make the neighborhood healthier? The people said, Well, I really don’t know anything about health, but I wish that we could do something about those gunshots behind my garage on Saturday nights. So, we asked them, What can we do about the gunshots? And they said, You can’t do anything about the gunshots unless you do something about jobs. These young people are not like us when we were kids and nobody had money. We were satisfied to go outside with no money and be ok, and now you see television and everything is about money. The kids don’t feel like they are worth anything if they don’t have any money and so we have to create some jobs for them.
Then somebody else would say, Well, you can’t create jobs unless you have some businesses. So, we need more businesses right here in our neighborhood. We have to go to Oak Park for everything we buy or to some other neighborhood. We don’t have our own economy right here in our neighborhood. Then somebody else would say, Well, you just can’t build a community and have a healthy community just because you have kids or you have a few jobs. Because if you don’t teach morals and values, if you don’t have that as your foundation, the jobs will leave and the businesses will dry up.
So, we are just listening to what people are saying. We looked at what we had and what we had was four hospitals in that neighborhood. These four hospitals were also around the table with us because they had their own organizational interest. They were competing for patients. We had the community’s ear and voice they wanted to make sure that they were plugged into us. So, we used that leverage with those hospitals, and we worked with five schools and those hospitals to help to get 291 young people into internships. Now, the hospitals will provide a precept for young people to go there, and they will learn and work in the pharmacy and they will work in food service and they will work in the gift shop and in the library and they would work going around visiting patients and taking books and they worked in the accounting office. So, they learned all kinds of skills.
These young people saw themselves differently. They began to have hope and their grades improved. The families began to brag about what their sons were doing. They weren’t gangbanging and not hanging out as much. They were paid to do this because many of these young people have the experience that their mamas or their aunties taking care of them are on kidney dialysis and then the phone service would be shut off, but they had to have a phone because that is their lifeline connection. So, the money that we were able to raise for them through the Mayor’s Office of Workforce Development, which is a right way for the mayor to spend the money, was a good thing for Chicago to do. We were able to get them stipends and they could actually go to work. We got the community college to come in and train them on various kinds of skills so that they could actually learn, not only from precepts, but they could also have some formal training from Malcolm X Community College, Wright Junior College, and other colleges that came in.
Our mission was to go out of business. We were always looking at ways that we could make a difference in terms of public policies and getting this thing implemented citywide. So, in three or four years, we had gotten 291 young people into paid internships and they ended up in Walgreens to train them in pharmacy and we built partnerships for them. The city of Chicago liked the project, and the public school hired our staff and took over the project which they called the Schools to Work Project. Our staff is still working there.
The people said, Schools and businesses. How do you build businesses in these neighborhoods? We have been trying to do that forever, and we were able to get these same hospitals to tell us who supplies their lights and who presses their sheets and who provides the catfish for the trays. Then we were able to get businesses in neighborhoods to supply those things. The real beauty of our work is the entrepreneur and we got ma and pa paint companies out of basements to paint the kitchen for Loretto Hospital and we got MK Cleaners to do the cubicle curtains for West Suburban Hospital. We were able to help these companies to get 3 million dollars over a period of three and half, four years. This became a model for the Empowerment Zone when the Empowerment Zone legislation was passed, and we worked with the city to put more together and do more of that.
Then the third thing, the big thing and the real foundation of our work, is called Every Block a Village. You can get businesses created when you have a lot of people who want business and you can help them clean up their portfolios and introduce them to the procurement offices at the hospitals. But how do you get people to change their values and morals? How do you get people willing to commit themselves to helping their neighbors on things they will not get paid for? Maybe what we can do is to find a citizen leader on every block and then try to turn every block into its own village. Maybe, on this one little block we could get the neighbors connected to each other and understand each other’s needs, and then maybe we could turn this block around. Maybe, they would know who their kids are and then tie that block into another block.
So, we organized blocks, and we called the effort Every Block a Village. We brought people together on these blocks every month. They began to talk about their blocks, and they began to talk about their children and about their vision. They remembered the way it was when they were in Mississippi and Alabama. We built relationships with these folks. Then we began to ritualize these relationships. They would take each other soup. They would take each other to the store. They would go to the pharmacy for a sick neighbor. We began to ritualize; we would bring them together for Thanksgiving; we would give potlucks and everybody would bring a pot. They were smiling and grinning with each other and their children would be smiling and grinning. So, when you saw the children on the street acting up, you could say, You shouldn’t be doing that, and you are not afraid of that kid anymore. When you saw some kids hanging out in front of your house, you are not calling the police saying that they are drug dealers; you know those kids in front of your house. They just don’t have anyplace to go. You can ask, What are you doing out here?
So, you are building relationships with your neighbors. You are establishing rituals and patterns for celebrating each other. You are feeling good. People would say, I was sick before this; I had this terrible disease and I didn’t feel like coming out to this meeting, but I sure feel better now. They feel a sense of satisfaction and a fulfillment from giving their gifts, and that is what I call health.
Health is a satisfaction and a sense of fulfillment because you have a purpose for living and that purpose propels you to do something, to give to somebody, and that makes you want to do more. The more money you get the more you want to share. The better you feel the more you go out there and not only work in your garden but go over to your neighbor’s yard and cut their grass. So, it’s a sense of being fulfilled and I think that when people are on the dependency end of it, they lose their sense of purpose and they lose their sense of their destiny. The biggest health problem we have in our neighborhood, particularly among our youth, and it is hopelessness.
I will stop there and I’m sorry, I just get going.
John: Jackie, one other thing. I know that when I was attending meetings of the citizen leaders of Every Block a Village, you always started with a prayer. Various citizen leaders would lead a prayer to begin and also to end the meeting. Then one time I remember that you and I went and interviewed some of those citizen leaders in their homes. One of the things that became very clear there was that they saw the base of what they were doing as an expression of their faith. Over and over again, that’s what we heard. I was wondering if you could talk about the historic church and the question of faith and how that gets manifested at the block level and the organization.
Jackie: When we first started Every Block a Village, we had people in the neighborhood who were Muslims and people who were Christians. Also, we had staff who were Jews and staff who were Muslims and staff who had no faith, but we had to be who we were. We do not discriminate. They are all very lovely people and they have all made tremendous contributions.
The idea here is that you have to believe that God is in charge and that God is with you when you are trying to help other people. This notion is about the spirit and you know the spirit is about loving other people. You can’t have love unless you are in relationship with other people. I mean to have the spirit and not be in a relationship with other people is like having eyes, but keeping them closed. It is the beauty of the spirit to be shared and to share your life with someone else and that makes you better and makes them better.
I think that everybody knew that. Most of the people are Christians. They don’t go to the same church. Most of them go to different churches, but they express their love for God by how they love their neighbors. That is very Christian, and I think very Islamic, too, that you love God by loving people. You exhibit your love for God by the way you help other people. We always emphasize the fact that people had to give of themselves, and it is in the giving of yourselves that you really do benefit the most. The person who gives benefits the most. Of course, that is also scripture. Jesus says that it is more blessed to give than to receive. By the giving you receive. It is when you keep yourself and when you hold on to your stuff that your life drains away and you become fearful, and you become hopeless. When you give yourself to other people, even if they are unlovable, you are doing it because of God. You give people a chance because you love God. It is a spiritual thing. It is a spiritual principle.
Peter: I have one more question. Tell me how you launched the block leaders and what they did in their early days?
Jackie: In order to really connect somebody with someone else, and to call them a citizen leader, we had to give them the name. The name went on before they were actually providing leadership.
We had some clear expectations for them. The expectations included them getting to know who was on their block. They also had to come to regular meetings and they had to bring somebody to the meetings with them. They had to represent their block at the meeting and, f example, someone would say, My name is Arlene Huntley from the 5400 block of West Haddon. She would give a block report. When something would happen, or there was some project going on, let’s say, October is coming up –– every October we would have Oktoberfest. We didn’t want to get into people’s ideas about Halloween so we would have Oktoberfest and the people would come and they would bring gifts for the children. They would have apple-bobbing and activities like that in the park. They would supervise it all. They would basically plan what they were going to do at Oktoberfest. They would get flyers out on their block about Oktoberfest.
If we needed to have people teaching, for example, about what health was in the neighborhood, we trained some of the citizen leaders to actually go down to Cook County and talk to the doctors. All of this was building their capacity as a leader, not only among their neighbors, but also with professionals because professionals are a part of the community, too. Of course, if they went down to County and provided training and then County had to pay them consultant fees for coming down there. They learned the language of the medical profession:, primary care, ambulatory care, and whatever else. They were also responsible for knowing who was sick on their block. They would make sure that a card got out and they would bring a card to an Every Block a Village meeting and 50 people would sign the card so that people felt connected to each other, even people who were not necessarily on people’s blocks.
Maggie Rogers: We have a question in the chat from Mac Johnson, one of our friends in Cincinnati. He asks, Can you share what works to help nonprofits’ staff to shift to ABCD’s approach of citizen versus client.
Jackie: That was one of the hardest jobs that I had to do. We had actually gotten funding to do the ABCD model, but all the people we hired wanted to be helpers. They wanted to go out and help people. It was difficult to get them to understand their job was to go out and organize helpers from the community. It takes a certain kind of organizer. I just got very, very fortunate to get somebody who was from Mississippi who had organized in the Civil Rights Movement, and they knew how to go out and find people to organize. They didn’t go out to do the helping; they were actually successful in doing the organizing. He has been with me, no matter where I go, he has been with me for about 30 years. He was very instrumental and knew how to go out and mobilize people.
What we try to do is to get people to go out to the community. They have to, first, not to go out and see who has needs, and see who is sick or to see who needs more food. They have to go out and bring people into the meetings. They have to let people know how much they wan these folks to come to this meeting. They have to build a relationship first. A lot of times you knock on somebody’s door and they will ask you, Why aren’t you guys doing more about these drugs in the neighborhood and why aren’t you doing something about schools in the neighborhood? I’ve got a mama here that’s sick and she can’t get her medical card, and why can’t you help me get her medical card?
So, you have to listen to all of that and you have have real authentic concern for people and show it, but you also have to keep your vision ahead of you and then you have to have a place to come back to and to debrief about your visit. So, when you come back you have to say to people, What did you learn? Then they talk about the needs and then I will start saying things like, Ok, that’s fine, but what are the assets? Sometimes people would say that we need to be doing more to help these people. Then you say, How are we going to help them?
So, you have to listen, and it is a process by which they get transformed. It doesn’t happen overnight because people have been trained in this dependency role to need help. It is very difficult to get people to see themselves as the help. That is why you have these meetings, and you have to get one or two people who are the strong leaders to have a voice that keeps repeating it.
I would like to share a story with you about one of the things that happened that blew my mind. We had a lady by the name of Diane Scott. We had organized people in the neighborhood to be on a community health board for Cook County Clinic when they came into the neighborhood. These ladies would go to the meetings, and they would come back and say the Clinic’s space is too small and we need to have another clinic built. So, one lady, Ms. Scott, says, I think we ought to build a clinic. Our children, every day, went to schools where they don’t have books and teachers who are not there to really teach them. They have to listen to the gang talk and walk through gang territory and be threatened.
In the meantime, we are in our comfort zone and we need to build a facility here; they need to see something. She organized a group of the citizen leaders on the different blocks. The women got together for catfish dinners. The County says, If you build a building will you rent it? They said yes, and County didn’t have any real clue that we were actually going to build it, and I didn’t either. We had never done it before. These ladies started selling catfish dinners. The men would come in too. I men didn’t fry fish, but they took orders and they would take catfish dinners downtown to different office buildings every Friday. They got fish donated from the fish markets in the neighborhood and they got cornmeal from Jim’s Grocery Store on the corner. They ended up raising about $60,000 from catfish dinners.
So, it was serious then. They had made a believer out of me, and they had made believers out of themselves. I said to the foundation that we had $60,000 and County said that if we built them a building they would rent it to us. So, was the foundation going to help? They said yes, and how much is it going to cost? We said, Well, we have this consultant pro bono who says it is going to cost somewhere around 4.5 million dollars. They said, If you raise the four million, we will give you $500,000. Then we went to another foundation and said that Foundation X is going to give us $500,000; what are you going to do?They said we will give you $300,000.
So, it went on and on and then the Empowerment Zone money became available, and we went down to the Empowerment Zone Board. All the ladies went there in the morning and asked for 3.5 million dollars. You have to go before a group of people and the people have to decide. The audience was packed and the audience could be for you or against you. So, the whole neighborhood went down there and there wasn’t any room for anybody else. When they started voting on what to do with the money, we ended up with 2.5 million dollars.
Then the state said if we were raising that kind of money then they were going to give us a million dollars. Thay’s the way we raised the money to build this building. County signed the contract to rent the space. Then we had to actually build a building. We didn’t know anything about contracts and bidding out and all of that. We hired a guy to help us. The neighborhood people said to us, We sold catfish dinners. We do not want to see all these other folks coming into our neighborhood doing this work. This has to be our work and our young people have to do this work. So, we are going to make this a Black project from the community.
We had a young guy who had a trucking company. He got so excited about this project that he got the boys who were out on the corner training bulldogs on Sunday mornings to come work for him. He put hard hats on them. He put them on crane machines and had them working on digging a hole. He had about fifteen of them. More than he needed, but he was giving them an opportunity. Of course, they didn’t have union cards, so the union came out and said they were going to stop us from working.Then the community came out and said, You will not do that. The union said, Pay for one of the guys and you can continue to work. So, we were able to have our people learning and feeling good about this work. After that we had R.S. Scott, a black concrete guy, come in and lay the foundation and he brought his workers with him. People who didn’t have an opportunity to bid on the big contracts could bid on our contracts and they could actually get the contracts.
We ended up contracting out 87% of the contracts to local people. Because we had to finish the project, and some of these people had various levels of skills, we ended up with 55% of the contractors being able to finish this job. I learned that there are a lot of reasons that people don’t make it and all they need is a little help. Sometimes all they need is a little encouragement and for somebody to keep at it and to provide that opportunity for them. When that job was being built, the neighborhood would come up to the site and just look in and see all these Black boys down in that hole. I would get so many phone calls from people saying, I can’t believe that we are really doing this. There was a renewal of hope that we can do things in our own neighborhood. We can raise money. We can put people back to work. We can improve our schools.
So, that is the real lesson that we learned about when we do things for ourselves, when we mobilize our own assets. We could not have done that if those women had not sold catfish dinners. It was better to start with what they had and build on that than to start with money given to us by a grant. It’s that for most of what we do and the little bit that we have, the people have to sow that. The Bible says that God gives seed to the sower and so whoever sows that seed gets more seed. Your skills and gifts are built by you using them. If you don’t use them and you are waiting for someone else, you are the most frustrated and unhealthy person in the world.
So, we have to use our gifts. We have to use our capacities because we build capacity by using our capacity. That is what people on the block have to begin to learn. Unfortunately, the media, the stereotypes that everybody communicates to us in our community, is that we are deficient and that we are weak. We don’t know and we need to have more education. People have common sense, and these are the same people who built this city and who built this country. People didn’t have education. They were ordinary people with ordinary gifts and mobilizing those gifts because they had a vision.
John: Great, great.
Bob (caller): Hello, Jackie and hello everybody. I’ve enjoyed your talk. I’m just curious about something, Jackie. Did you find that people in the South had a greater willingness amongst them to help their neighbors than you find in Chicago or is it about the same?
Jackie: I think at the time it was a greater willingness to help because you had a focused enemy, if you will. There was the Ku Klux Klan as the target enemy that mobilized people. In Chicago, there was no target enemy. There were good people and there were bad people. There were good people and bad people in the South, always, as well. People were much more open about their feelings about Black folks at that time. Here it was not as clear. People felt that they had more, and they didn’t have to mobilize as much as down there.
It’s no different now. In the South now, and in Chicago now, I think that you have the breakdown of community across the board. I mean the breakdown of families in Chicago and in Mississippi. You have crime everywhere. People are afraid. In Chicago people are afraid and down South people are afraid. So, this fear is actually, I think, the very root of violence in our community. People always just say violence is a result of not having money or these kids are trying to make money here or through gang activities, that sort of thing. Really and truly, I have learned that kids that are carrying guns because they are afraid that they are going to be shot up by other kids. The gangs would leave drugs, but they would have to have protection.
We were not afraid, even with the Ku Klux Klan in the South, because we had family and we had community and we had hope and we had church and we had a future presented to us. We had a destiny to fulfill. We were all made to feel very important to changing this community. We were very important to changing racism in America. We were change agents. Now, with the dependency kind of attitude you are waiting for change to happen to you or for you. When I was a child we had many Black leaders. Even as a grown-up, twenty years ago, thirty years ago, you had a lot of black leaders. Now, you look for the Black leadership and you don’t see them. You see preachers every once in a while, but people are so bogged down with their own organizational interests that you have to ask, Where is the community and where is the heart of the community? We were seeing that there was a real breakdown in community because people have embraced the whole dependency model, the professional model and needing service model, and it is killing us, actually.
Peter: I have a question. How does the economic or local business-owned landscape look now in the neighborhood? The story about having raised the money and 80% local to build the building. Describe the economic landscape some 20 plus years later?
Jackie: I would say it’s dire. I think that it has continued to bottom out. Unfortunately, it started probably in the 80’s with the loss of 145,000 manufacturing jobs in the Austin community alone. Austin was a heavy manufacturing area. With manufacturing leaving and businesses like restaurants and dry cleaners and other businesses that support manufacturing leaving the community, it has been piecemeal all the way. You have a few retail stores that have opened up. Of course, Walgreens is there and CVS and some fast-food restaurants. Those jobs are there and those kinds of businesses are there. You still have the liquor stores, but by and large, unfortunately, not a lot going on in terms of business.
Peter: Have you tried things to launch and support and fund locally owned businesses? What you are describing is everywhere. Outside-owned and money leaving the neighborhood.
Jackie: I talked about the business that we organized. We organized businesses to have contracts with people and so there were a lot of businesses coming in with various levels of capacity. That was one of the areas that sort of got spun out. I think that not for profit organizations try to do a good job –– and this is going to sound hypercritical –– but I didn’t think we should last more than five years. I wanted us to go out of business because you have to get into organizational interests if you are going to stay in business. As long as we could work in the community’s interest then I thought we could stay. At some point you have to try to figure out how you are going to survive and how you are going to pay your bills and the organization has to get bigger. It was something I didn’t want to get into.
So, the business network was spun out and another group began to do business networking. They organized a big roundtable with meetings with politicians about business development. The politicians brought various businesses to the neighborhood, but it didn’t really improve the neighborhood situation. It really has to be, I think, looking at to what degree you can create sustainable kinds of income in that neighborhood where it can turn over and over. So, you have Walgreens in there but the grocery stores are not there. A grocery store is a business that perhaps could have other kinds of links to improvement in the neighborhood. It has just not worked out. It is a difficult job to do. It takes almost full focus to do that.
We were working on Every Block a Village and working on building our health facility. We tried to stay in health because when you have an organization in a neighborhood people will take you down if you try to get into schools because your area is health. They say, We work in the schools. You have other organizations doing work in schools, and you don’t want to get into that fight because it is distracting and wearing on you.
Peter: Tough. It is amazing to listen to you, Jackie. We are so grateful. There is a realism mixed with hope. I think the way to create a local economy, perhaps, is with co-operatives and it’s a tough nut to crack. To bring outside businesses in doesn’t really solve the problem.
John, any questions or thoughts?
John: Well, one thing I know that is currently going on with the Authority is the housing development process. That is key to providing local jobs.
Jackie: Two years ago, we started to look at ways that we could take some of the houses in the neighborhood that had been abandoned as a result of foreclosure. People on these blocks were having a difficult time holding on to their equity in their houses. The abandoned houses were being neglected terribly by the banks. They were being broken into. We came up with the notion that we would do 100 men and 100 homes. These homes would be renovated by people in the neighborhood and by local businesses. These homes then would be sold to local people.
That is one of the things we started doing, as well as fundraising. So far, we have done about 17 homes and at least 15 have been sold. If they haven’t been sold, they have been leased. It is really wonderful because schoolteachers from the neighborhood now live in the neighborhood. They were able to go on that block and help stabilize those blocks. We were able to start Every Block a Village on some of those blocks.
We are having an Every Block a Village meeting tonight and we bring people out to give them a bigger vision. Just trying to bring people who have resources back to the community and give them a good place to live and at a cost that they could afford. They would be able to get a great house that they would not be able to buy in some suburb. Then you have people who have values, people that have education and people who can contribute not only in terms of paying for their house and paying taxes on their house, but also serve as advocates with the politician for better schools and for more opportunities in the neighborhoods. You have better streets and people who pick up the garbage and pick up the trees, who make sure that the alleys are clean and there are activities in the park district.
Some of the things that they have been going on in Every Block a Village lately have been the demand that the fees be lowered at the park districts because kids can’t come because they cannot afford the fees. If they don’t pay the fee, they can’t participate in the park district. Also they are insisting that they have better bus transportation because if we have to leave the community to go get a job, we must insist that buses not just run in the daytime but also at night as some people work the 11 pm shifts.
These are some of the policy kinds of things these people are able to espouse. Then it has been a wonderful thing, and we have also raised money towards supporting that. I think we have raised somewhere around $400,000 and all of this money has been spent in neighborhoods and on neighborhood contracts and neighborhood folks working. People who were once in jail and coming out of jail have to come to these meetings so they will be a part of the community. It’s not just a job, but also a part of the community. It is part of what we require from them.
John: One of the things that strikes me as especially significant about everything that you are saying about the Westside Health Authority and the EBV is that you are bringing people together to perform two functions. One, to be advocates for better transportation, for instance. Also, to be involved in neighboring in ways that brings new life to people and the young people in the community. So, you have a double vision. So many organizations just have a view of advocacy, but you have been able to combine advocacy and community building in the same organization and that has always impressed me as being especially important. A lot of other organizations could learn a lot from you about how you make both those things happen.
Peter: We are nearing the end of the hour and we are so grateful to have you on this call. Jackie, any final things that you would like to say?.
Jackie: I am very grateful for John’s work and I have to say that it came to life for me when someone asked that question about how you get people to stop seeing themselves as someone who goes out to help someone with needs instead of going out to organize the help. So, that has been in the back of my mind all along. I’m just very grateful for the work that John has done and you, as well, Peter. It really began to help me think this way. I think that we have to help other people to think this way.
It is hard because as a Black woman so many times you don’t want to get caught in a conservative mind and say that these folks are victims, and they are going to be victims and leave them alone and so forth. It was not always the case. I had a young man who went out and did some outreach on the blocks. He’s about 30, and has been in jail about four times. I put him out there and he had been mentored by me. So, we paid him to go out and do some surveys, and he came back and said that the people who are 55 to 65 years old are the people on the block that are picking up paper. They are still trying to help their neighbors. They are really hopeful, and they are really helpful. The people between the ages of 45 to 55, he said, they are hopeful, but they are less helpful. He said those that are 30 are selfish. He said they think of themselves, and they are buying their cars and their jewelry and they are competitive with their neighbors. Those under 30 are not hopeful; they are hopeless and they are fearful. He said, I don’t know how we are going to change that. And he is 30. He is somebody in the church now. He is somebody who never went to church and now he is bringing his folks to church.
The change that we have to have is not change that can come from the outside, and it is not even outside of our people. It is the inside, and we have to change the heart. That is the only change that is sustainable. That is the change to help us all to grow because when you have a passion for something, even though your leg hurts and you have arthritis, you still get up and move because you have a passion for doing that. When you do it you feel better. You feel healthier and feel more satisfied. That is health and that is being healthy. That is satisfaction and fulfillment from giving your gifts to contribute to society. When you cannot do that, then we are not in a healthy society.
Heart Surgeon Leads the Way
Quick Summary:
Doctors Paul Uhlig and Ellen Raboin talk about the flaws in our current healthcare system: mainly how the practice of medicine does not do enough to build community for patients in hospitals. They talk about Relational Infrastructure.
For ten years following the 2010 publication of their book The Abundant Community: Awakening the Power of Families and Neighborhoods, John and Peter hosted conversations with neighborhood activists on their community-building work. All their ideas are still at work and continue to be influential for anyone engaged in creating the future in the present. The transcript here has been edited for length and clarity.
Full Transcript:
Heart Surgeon Leads the Way Toward Collaborative Health Care
Conversation with Paul Uhlig, MD, and W. Ellen Raboin
February 11, 2014
Peter Block: Here’s the context of why I am excited about what Paul and Ellen are doing. There is great conversation in this world about health care reform and if you look at most of it, it is really about better disease management, better health care management. Mostly about how to automate the process, how to lower the costs, increase speed, and make it more convenient. And to me that’s not really reform, and I thought it was until I met Paul several years ago.
What Paul represents is to me the real reform. which is to change my relationship with my own health and with the health care professional. What’s exciting about what Paul and Ellen have done is that they have invited us to change the relationship we have with our own health and the people around us and treat health as social phenomenon, not a medical problem to be solved.
So, I’m excited, Paul, and I don’t quite know how you would like to begin. You both have written a book. Maybe you could give us a little introduction about what’s exciting to you now about what you are in the process of writing about and creating.
Paul Uhlig: Let me begin by thanking you and John and Maggie and Leslie and the listening audience for the privilege of having the two of us with you today. I’ve long been an admirer of your work. The audience may or may not know, but you and I had an opportunity to cross paths in Cincinnati several years ago, and we worked side by side a little in health care. It was a tremendous experience and I’m so grateful for continued friendship. Ellen and I bring complementary perspectives and maybe I will let her begin from this point. Ellen, I could I pass on to you?
Ellen Raboin: Yes, and again thank you for having us here.
I met Paul in a cultural workshop after he had done some wonderful things in a hospital I’m in where the culture had chewed him up and spit him out. What he was talking about was building community in the hospital and what that means. I like the way Peter put it that this as a social phenomenon that was going on. That was ten years ago and we never stopped talking and thinking about how we build a healing environment where people can relate in new ways. It turns out that relating in new ways is the way that you create new ways of relating. It’s been an adventure. Paul?
Paul: The work that we are focusing on is in hospitals and I say right from the very beginning that the interaction in a hospital is only a very small part of where health is created as we live and work together. That’s true for health in general and it is also true for the way that we respond and recover and heal from an episode of illness. Yet, an entire lifetime can be lived in those few days of a hospital stay for someone who is seriously ill and for their families and the people who are working together to care for them.
What’s very interesting to me and, framing a little bit of our book, is a transformation that’s occurring that is not limited only to health care. It’s a much deeper transformation in society. I certainly have been a party to that in the years of my career in health care. We all know every day that conversations are happening in our country about health reform, and I don’t really have a lot of deep passion about that one way or another. Whether we are Democrat or Republican or what we think of health care reform, legislation is smaller on my list of concerns.
Just step back a little and look at some very broad changes that are happening in health care. I’m a physician and I’m trained very well to do the things that I do, so it’s interesting to step back and look at that training and the work that the physicians, the nurses, social workers, pharmacists, and all the health professions do and how we are trained.
There’s basically a model that we work under that tends to abstract the person away, to focus on the disease, to focus on the scientific treatment of that; that’s wonderful and I don’t want to take anything away from that. But along the way as that model has been applied, for decades now, some things, some really important things have become off-center or lost. It’s interesting to just to reflect about some of the trajectory of this way of working in health care.
When we step back and look at health care we see a huge part of our society, with some of the very finest people that society has, who are very well trained, who are very responsible and working very hard every day across the country and the world. Yet, when we step back and see the results of that in terms of costs that are growing at an unsustainable rate, quality that is surprisingly uneven and not what we would wish it to be, people that really cannot open doors to heath care in a way that all of us wish that we could. The experiences of giving and receiving care is something that should be one of the most extraordinary of human interactions yet they are often leaving people feeling alienated, exhausted, discouraged, scared instead of restored anew.
So, my journey began by trying to understand how can it be that such good people work so hard and produce such less than optimum results for society? As I began to understand this, it was really fascinating to learn the history of these models that we work in. They have a birth date in the late 1800’s and a place of birth: John Hopkins Medical School, which was founded in 1893, and where there was a small core faculty of radical and revolutionary pioneers who became together at that time and basically broached this model of care.
There was another powerful event in history, which occurred in 1910, when Abraham Flexner, who studied the state of education and practice in the United States in health care wrote a scathing report in which he said there is so much that needs to be done, but there is this model, this Hopkins model, that prevents us from doing it.
It was a crystallization, not only in the United States, but also across the entire world, around these ways of working. The ways the hospitals are organized. The way the practitioners do their work. The underlying thought processes used, and the resources that are used, in trying to help people in times of need. We had 50 or 75 years of amazing benefits from that and my specialty is one of those, cardiothoracic surgery, which did not exist at that time, and there are so many things that can be done for people. Yet, increasingly those ways of working are no longer bringing us benefits and we have outgrown these methods. We have extended capabilities and have begun to fractalize what we do so much that the human core process is often lost and with that tremendous opportunities have arisen for trying to do things right.
So, our work is really about pathways to a new future. I’m increasingly certain that we are at a fascinating time in health care. A once in a hundred or a hundred-and twenty-year moment where a paradigm is being completely rewritten. One of those early pioneers, so long ago, was a very revered figure in health care and his name is William Osler. He gave a commencement address in about 1916 to a medical school class. It was called to my attention by a person I admire very much, a man named Brent James, who is a real pioneer in transforming health care practice in the Salt Lake City area. He found this talk and it is incredible.
Osler begins by saying, Congratulations. This is such a milestone in your life. You are about to go into your practice and you are going to do extraordinary things and you are going to have wonderful lives. And then he paused and said, But you know I actually feel sorry for you because you will never be able to experience the unbelievable thrills, the highs, the lows of creating a new way of working in health care as we did. And this transformation had nearly finished by the time that he gave this talk. And it was so poignant because for decades after that he would have had to give that same talk, but not today. Today he would probably be there with his bright eyes and say it’s come back again. It falls to your generation to create this new world of health care.
And that’s what I really feel at this moment. Now, like all true innovations, what this future is going to be is something we do not fully see yet. It’s pathways that we can see. Now what I was going to say is these pathways are true collaborative practices and active engagements of patients and physicians.
Peter: Could you make it more concrete for us and give us some examples of the transformation?
Paul: Let’s think about my friend Mary. Mary is a nursing educator and she is a maternal child nurse. About 13 years ago her mother and father were in a terrible car accident. They were going out to dinner with another couple and another driver collided with them head on. The two friends of the family were killed at the scene. Mary’s mother was very seriously injured with a head injury. Her father, who was the least healthy, she said, was the least injured. Over the next 30 days, Mary and her family helped care for her mother in what proved to be the last month of her mother’s life. The challenges that she encountered began when she first came to the hospital. Her parents’ pastor notified her that an accident had happened and she was there at the emergency room as a nurse and as a daughter and could not be allowed into the room to see her mother because they had not positively identified her mother even though Mary said, That is my mother. It took a phone call to the sheriff to release the names to even allow her to go in.
Over the next month her mother was transferred five different times. Mary spoke to multiple people who were trying very hard, working very well, trying to care for her mother, and yet, she said with each transfer a little a bit of her mother’s history was lost. She said if she had not been there, the ability to communicate and to connect between what one group thought and what another group thought, or even from one shift to another shift, was completely missing. Eventually her mother died. Probably her mother would have died anyway, but Mary was just grieving over the fractalized care that she had experienced and the way the entire thing took place.
Mary also talked about her father. She said her father was an older man in a wheelchair and a niece brought him 50 miles each day to spend time with her mother. When health care practitioners would come in they would ignore him, and they wouldn’t speak with him and she said the language went up a notch, because she was a nurse. She said Please, don’t ever forget that this person is here.
These are often, sadly, the realities that people experience in health care in hospitals. There is wonderful intent and so many people working so well and yet often there is this disconnectedness. Sometimes people say, Don’t you people talk to each other? So, we set out to figure out how we could do better. How could we do an even better job of doing this? And it turned out to be the simplest things. Simply trying to bring people together and to use ordinary language and to sit down and try to change these traditional hierarchies so that the strengths of the patients and families are woven into the care that we are giving.
As we began working in these ways, things started to change. Outcomes started to improve. Patient satisfaction started to change. Our sense of meaning and fulfillment started to change. Also, the context that we were creating became sort of alien in the hospital system and that created interesting challenges as well. Eventually several of these various successful models that we created did not survive in their organizational context. And so, what Ellen and I have been working on for the last ten years is an explication of what is really happening. We call them “Implantation Field Guides” for people who wish to follow on this journey and make their own contributions.
There are some concepts that we have been able to develop and apply that I think might have some meaning outside of health care as well. I’m concerned that I’m talking too much so I’m just going to be quiet and listen here for a minute.
Peter: Thanks, for making it concrete. Ellen, would you like to add something that would help us get more of the texture, like what it looks like?
Ellen: I think these pathways are a good way to think about that. That we are not specific to health care, but we are as a universe moving from the ideas of having experts to the ideas of doing things in a collective and collaborative ways.
The health care environment itself has been organized around individual providers and so that accounts for the power and respect we give to that way of organizing the work. It’s moving now to involving the patient and the family, and this is not a new discourse in our society. We want that for our family, we want that to organize around them, and furthermore to organize around what we are focusing on, which is organizing around meaning. When you start doing that and you start putting people in the same room together, and you ask each other what matters to you, you have a whole different context.
So, what we are talking about here is building what we are calling the social field that is full and rich with resources that enables us to do things that you can’t do when you are organized in a different way. So you can ask each other, How can we get this guy to his sister’s wedding? We know he is going to die and he is going to be dead in a month, but what he wants is to get to his sister’s wedding before that happens. So how can we do that? That way of thinking about what care is, and what health is, puts you on a different agenda as you are together.
So, what we are looking at is reflectiveness between the patterns of interaction that don’t naturally happen in a hospital, and we can build that intentionally. For those of you on the call, we have to figure out who you are. You know that the meetings happen by professionals or not at all. What would happen if we put different people in a room together?
Peter: What would I see?
Ellen: Right now, some possibilities are that when you walk in you see a conference room down at the end of the hall where a group of people are talking about the patient. You take that group of people and put them in the patient’s room with the family, where they are talking with the patient and with the family. Furthermore, you say, What can you tell us about what is important to your father? What can you tell us about what his life is like when he gets home? And can we all get clear about what that means here, today? So, there is that group standing in the hospital room seeing what we can do to change how the care happens and it opens up and makes it possible for us to say things to each other that we didn’t before.
Peter: I would see people standing in a circle in a hospital room, the patient’s room?
Ellen: Yes.
Peter: Who would be in that circle?
Ellen: All the disciplines would be there, because remember the driving question was, Don’t you guys talk to each other?
If you’ve had the experience of being in the bed in a hospital, the nurse comes by and the doctor comes by, and probably the pharmacist never comes by. And the residents come by, so you get a little bit of the story from each one, but who is integrating that? Now, the first thing that happens is for everybody to be there. But the thing that really happens is the emergence of something that wasn’t there before, because of what you can create with all of that context in the room, and all that feeling. It becomes sort of a magical circle. People look at each other and the patient says, All of you care about me, I had no idea that all of these people were caring about me.
There is a fondness that shows up between the patient and the family and then it becomes a healing circle. It’s not about the medicine anymore and it’s not about disease. The shift from the traditional care model, which Paul has pointed out has great benefits. “We have heart in Bed 2” ––patients are talked about that way. And now we can say, We have Mr. James and his wife over here; let’s go visit together and see what we need to do today. It’s about the promises that we made and the promises that we kept to each other. It’s a whole different language that comes with that way of caring for each other.
Paul: One of the interesting things, Peter, is our marker for whether this is working or not is whether there is laughter. It’s spontaneous and it’s kind of leveling, the idea that we are just people together. There’s an interesting term called “Patient Centered Care,” and we began to notice that really the patient wasn’t in the center of the circle, but the patient was a part of the circle. The patient, the family, and all of us are just contributing whatever expertise we can. The patient is contributing their sense of what they really want, the family is contributing, we are contributing different things, and somehow we are providing for each other’s care. And there is this very beautiful thing that takes place. It’s amazing.
Peter: John, do you have thoughts or questions that you might have for the conversation?
John McKnight: One thing I was wondering was whether both of you had examples. Here we are trying to get engaged in the process of the patient and the family and relatives. Can you give us some examples of what their participation and the context of their participation has meant in terms of your ability to do your job. You are listening to people who usually aren’t listened to, and you are a person of some expertise in diagnosis and treatment. What do you learn that you never learned before because they are in the discussion?
Paul: You learn the things that matter. The shift comes toward meaning. One of the patients that I remember is one who said all he wanted to do was to get home to his mule. He had one horse and one mule and that was more important to him than any of my medicine. “Just get me home” is what mattered to this person. Another gentleman raised Black Diamond watermelons and I’d never known what a Black Diamond watermelon was. Another man was an airline pilot and he was interpreting everything that was happening to him through the lens of “am I still going to be able to fly?”
So there is what matters to us in our lives and there is the inconvenience of all this, like this heart attack. And there are probably many different ways to respond, but if you were to create a polarity, one way is to respond to the heart attack and assume that our job is to fix the heart attack and then they can go on about their lives. That is what health care is often like. A different way is to say. What are our true goals here? What is this person finding meaning in and how can we weave the care that we are incorporating together in such a way that it supports the richness of those goals? It’s very different.
Ellen: You are talking about the hearts being broken, but there are also broken hearts. I hear lots of stories from Paul. One recent case was two brothers whose mother was very sick and wasn’t going to make it. The brothers hadn’t spoken in years, and it was broken family. And here you were at this moment, and they knew that it was better for their mother for them to stand together by her bedside and be together. Paul was able to facilitate that as a human being with these brothers who really wanted to relate at the bedside with the mother.
As a society we can ask ourselves why we are dying in the hospital in the first place. There are whole other sets of conversations we could be having today. Why is it still happening and why we are still handing that ritual over to the hospitals? Providers are in that place of really important moments in our social lives when our parents are dying. To be able to be human with each other is a resource we can build together. We say, This makes sense and we can do that here; we should do that and we ought to do that with each other. That’s what we are looking for when we go in. That’s what people think we ought to be doing here with each other. Should we just give them their medicine and leave or is there something else?
Paul: If I could add one other dimension, just as a member of a care team. We have spent a lot of time on the call so far talking about the process of rounds itself and the interactions and the purposes. What we found is when we tried to simply enact rounds in a collaborative way, it almost always did not sustain in the care environment. When we went back to the places where it did work, what we saw, in addition to the rounds, was that in some way another element had arisen in that environment, which was a weekly meeting of the care team, ideally with patient and family present as well, but not for the purpose of caring for the individual patients, but to just simply give us an opportunity to reflect how they were doing together as a team.
A whole lot of our book deals with the importance of creating what we called Relational Infrastructure, and it connects with the idea of action and reflection being coupled together. In health care there is tons of action and there are almost no opportunities for the intact collective team to reflect together about their work as a team and how they can do an even better job. Our implantation model actually centers on creating opportunities for people to simply meet, reflect, and converse.
What we found is that model builds a social field and a capacity that is increasingly rich with what we call resources, contextual resources, that arise in that. We have done this together before and we can draw on that the next time we do it. We remember this family and that way we can respond even more empathetically and wisely with this family. These become resources that we draw upon, but the model is enabled by a particular infrastructure and in health care those things usually don’t exist. So, the implantation model really focuses on how things are created in conversation.
Peter: What’s the argument against it?
Ellen: Part of the relational infrastructure is saying things like we need to schedule the way that we work so that we can all be together. That’s not the way we tend to be organized. Very often, the physicians are not even employed by the hospitals. How can we ever come together? It’s really hard.
Paul: And that’s nice, but we are too busy for that. That would be great.
Ellen: That’s impossible. In a way we ask, Why would we do that? A real surgeon would be in the OR. I mean, why are you out here, on the floor with the family? The nurses do that part. So, we have a divide-and-conquering way of scheduling and organizing and paying and all of the other, and we call this OD 101. The idea is shockingly simple, but hard to implement.
Here’s a really great example. We were just at a teaching hospital where the residents are at the bedside and what they are doing with those rounds is that they are teaching. It’s not that they don’t care, it’s not that they are not giving good care to the patient, but what they are actually doing is teaching. So, when you ask them to move to this way of talking so that the conversation is divided among the people who are in the room, the attending physician says, Now wait a minute; how am I supposed to grade the residents on their knowledge and their ability to report if they are not doing that, if they are not reporting on the bedside? That’s a different accomplishment. It’s a different priority.
So, it’s a very real question. How do you stay in the institutions that are built around creating these magnificent professions that keep us alive more and more? And we want that. We want that society, and we want them to save us, but how do we do that and create these human environments at the same time?
Peter: One more question. What about when they leave the hospital? Any thoughts about what would sustain the healing environment afterward?
Ellen: Yes, I had a wonderful man come to the door the other day selling magazines who has had a really rough life and he is trying to get back on his feet. He learned that I worked with the Ronald McDonald House, which is about putting families at the bedside. He said, Can I bring my son who is five and show him? I want to show him how to take care of people, because he had been in that situation. He knew that his family did not know how to take care of him. He was left with these providers who could not care for him. His mother is on drugs and he does not know how to help her and I want him to learn.
I thought, Oh my gosh, where do we teach our children how to care for each other?
So, I think there are some answers on many different levels. Peter, there is a help desk coming in to help connect to community-based organizations that are standing there wanting to help all of our institutions –– when people come out of prisons, when they come out of hospitals, when they come out of college now. How do we help these people make these transitions? This was so touching to me about this man wanting to teach his son to take care of his mother.
Maggie: The comments in the chat were early in Paul’s discussion. One question was: Is this true for geriatrics community, too? The other one is about how human core is lost. And we do have one caller in the queue.
Peter: I think we may have responded to some of that. There is another comment that says, My client has a group of facilities for senior living, independent, assisted, skilled nursing, and dementia units. What would it be like? Maybe we should take the call and then we can lump these together with Ellen and Paul responding.
Dr. Art Sutherland (caller): I am a retired cardiologist and have been working in population health issues for the last ten years. I understand all about hospitals, but what I want to point out is that basically that’s really extreme care, end of life, extreme trauma, extreme diseases. What you are doing is fantastic in that setting. What I was thinking and hoping to hear, if you are talking about The Abundant Community, is that we really need to focus on the community, because medicine only counts for about 10 to 20 percent of the wellness of the whole country. And if we do the upstream approach in eliminating the social determinism of health and make it better so they are not all negative, then you would do a much better job at prevention and you will keep people from reaching these terrible end stages prematurely.
Paul: Thank you. Did you want start, Ellen, and I will add a few comments.
Ellen: This goes back to what we teach our children. This movement is not, as you say, about the hospital and only about the hospital. In fact, we hope it becomes less so. It is about how we help each other before we get there and after we leave there. So, I’m with you. I think that it was Herb Shephard who said light many fires and get all the people involved and continue who should be in this conversation.
Paul: This is really a poignant and important question that Dr. Sutherland asks. There is a fascinating literature on the so-called Social Determents of Health that shows that what is done in acute health care is a tiny fraction of the determinants of the health of the population. This was actually said about five years ago and it was almost a crisis of faith for me. I’ve been spending my entire life trying to make health care better in a hospital setting and it became increasingly clear to me that where our health is really, truly created, and where the work needs to happen, is in the community. So, it’s like, what am I doing and why am I doing this?
Then it gradually became clear to me that what I had in the hospital setting was an extraordinary laboratory for understanding how to achieve things that could apply in many different settings. The way that we view what we are doing now is that we are basically in that hospital care unit, which we now imagine could be a workplace or a school or any community setting. We were actually creating what we would call an “intentional alternative social field” and we were developing methodologies to generate this richness of resources in this intentionally generated social field that would allow people to almost effortlessly do things that if we tried to do it by individual coordination or hard effort were almost impossible.
So, the simple idea is that there is this thing that is called social field, that is like this living memory bubble of things that people have done together. There are these resources, which are shared experiences, memories, and previous interactions, and these are actually made or socially constructed by people doing things together. If you don’t have a way to meet, connect, and interact, then these things cannot form, and by intentionally creating those things, simply in our case a weekly meeting of the inter-professional team with patients, families that have been cared for before are present so that voice is there as well. There are opportunities for actions and reflections so that you are always moving into action and back to reflection and then back to action and then back to reflection, and that grows and populates the social field with these amazing capabilities.
Peter: One of the questions: Are there any places doing intentional alternative social fields? I want to mention that Edgar Cahn and the TimeBanking idea that has created a structure to build a social field of people exchanging and engaging in an economy of generosity. So, I think there are some structures out there. Edgar’s is called TimeBanking. So, there are some things happening.
Paul: Edgar’s comments and concepts are very exciting. The idea of giving that structure so that things that people want to give and take put great meaning into giving and the idea that people wish to receive and interact and connect. It’s very exciting to me.
Ellen: Someone asked about what the building blocks are, and I would say connection is the word you are hearing over and over here. Structure opportunities where people can connect. Give them that opportunity to pay attention to each other in ways that they have not had before. You know, we are walking through life right now and we can change our pathways so that we are walking in a way that’s more connected and give us moments to stop and reflect. hat can happen in the community and that might be easier than in the hospital. That would be awesome.
John: I might add that there is a neighborhood organizing movement that is increasingly focused on how to weave people together around what they have or what they have to contribute rather than what they want to fix or change. When you see what begins to emerge in those neighborhoods, what you find is a bridge to the kind of in-institution experiment that you have.
Supposing that you knew from a neighborhood around the hospital that there were 16 people who indicated that they would like to do this with people who were older or they would like to provide the following kinds of interactions with people who love horses. So, as we move towards a culture of a contributing, productive, and giving community, it provides the information that people who are in institutions would need and use. This sort of answers Peter’s question: When somebody leaves here, where does this continue and what do you build on? So, connecting that kind of organizing that you are doing has great potential.
Ellen: Who does that connecting? Who is responsible for that? The gap that we saw here in the San Francisco Bay area is that when you get discharged you notice who is standing there. When the doctor that this child is hungry, or thinks I would like to work with the disease, but this child has lead in their apartment. There are community-based organizations that can do something about that, but who makes the connection between the need of the family and the organizations and the people? As you say, the individuals who are standing there and say, I would like to help. Organizing around that is not robust, yet, and we are working on that in different ways.
Peter: Here’s a question that somebody wrote in: Why don’t doctors leave the place, the clinic or hospital, and join the social context of the patient?
Paul: So, it’s a serious question and so ask it again and let me think about it for a minute.
Peter: Why don’t doctors leave the clinic or the hospital and join the social context of the patient?
Ellen: I will tell stories about Paul where he has done that and he has been scorned by his hospital system for doing it. Legally you can’t go to that guy’s house and see how’s he doing.
Paul: Well, you can, but I was discouraged from doing that in several cases, but I do it and I love that. Yes, it increasingly is that way of working that works. It is going to be harder at first to get doctors to do that, but there are other wonderful other health professionals who live in those worlds and gradually the more that physicians are able to experience that, the better. And that brings up the whole domain of health professional education. It is extraordinary how transforming that is and it is a wonderful question. The more that we can do those things the better we get.
Ellen: Why don’t we stop relying on doctors? Maybe there are other people out there or other professions out there. Why does it only have to be the doctor? We just said we need a whole team here and we need a whole village. So, if we stop asking for a doctor to come and instead ask a different question. How can we create a healing circle that is funded differently or resourced differently? How can we expect the doctors that are in the system to do that? I don’t know if that is the right answer. Maybe we do need them, but I’m just saying that there is more than one way to think about what is happening there.
John: That is how the hospice movement really began before it became medicalized. It was exactly what you are talking about.
Charlie Hathorne (caller): I’m the one that brought the question about senior living. In terms of the strategic work my client is doing, it’s like a culture shift from moving from going to a place to die to going to a place to live. To me that’s a major turning things upside down shift, and it has implications for, in Peter’s word, hospitality, in terms of coming to a place to live.
As I listen to you, it’s the idea now about how we can think about creating senior living places that are a place of community. When I first heard Paul and Ellen talk about ithat n terms of the hospital setting, it is reintroducing existential issues of the community that helps us address, like denial of death and what choices do I have, and meaning and isolation, and all of those things I hear going around the hospital bed or in a hospital room. It seems to be the reintroduction of a human element that maybe we could think about for senior living facilities. It’s just a thought I have, and I would love to hear your reactions to that.
Ellen: I would take “a human element” and say “human spirit.” One of the questions that we ask is, Is the thing that we are suggesting doing here helping the human spirit or hurting the human spirit? I think that is possible no matter where you are standing. I love that expression “building a place of living,” and I can see the possibilities for the connectedness there when it’s alive like that, when that’s what you are feeling.
Peter: We are running near the end. Any final thoughts, Paul or Ellen, you would like to share with us about this call or how it has gone for you?
Ellen: Thank you for being here and we hope we can connect.
Paul: From my perspective, what I know is that I have been changed by these interactions at the bedside of patients in these ways. I know that my colleagues have, and I know that my patients and families have been changed, as well.
About your question, Peter, how does this carry forth from the hospital to the community? I think that at least one way is that it carries forth is that we leave these conversations with a different heart. We see things in new ways. We see possibilities that we didn’t see before. We have a kind of confidence that we actually can participate in our own care. That we can work in different ways and that care doesn’t have to be produced and consumed, but that it can be co-created together. That it is just not about whether an illness is treated, but whether a life, purpose, and wholeness is recognized and shared with others.
So, I think it is that change that takes place as we participate in these things is the thing that carries forward. I am glad for this chance to have yet another conversation. That has been the thing that has been so fascinating for me as a doctor: to see the power of simply talking and a safe place for that to take place. So those would be my reflections right now.
Peter: A great point, Paul. Thank you, Paul and Ellen. Thank you very much and it is nice to hear your voice in what we are doing here. John, any final thought you might have and then we will give it back to Maggie.
John: It does strike me that something that Paul and Ellen are moving toward is that they are redefining what it is to be a professional. I think for many professions across the health and human services world is that we are always cautioned to not become involved with your patient. In Illinois more medical people have lost their licenses for something called “becoming personally involved” with their patient than any other cause. But it is being personal that seems to me is at the heart of what we are hearing here and that contradicts one idea of what a profession is about, and it threatens the idea of the objectivity of the person who is removed from us. So, it is courageous, this redefinition of bringing into the world the personal as a critical factor in healing. It is a wonderful thing that you are doing.
Peter: Also, another thought that I like, Paul, is the way you keep saying that the science and the skill of the physician are very critical. There is nothing in what you are saying that undermines that or wants to substitute for that. I think it is important that these two things, this kind of social field that you are talking about and the immense technical knowledge and skill that you have as a thoracic surgeon, can live together. It’s not having to choose and it’s not a movement from one to other, but trying to deepen and enrich that so we can appreciate. Every time I hear you, Paul, you start by saying what we have done is miraculous from a science and technical point of view, and so thank you for that.