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Starfire brought in L.A. based social innovator, David Hsu to talk about the impact social isolation is having on American life at our last un-conference event. His presentation, “Profits & Purpose in the Age of Isolation” highlighted some of his findings shared in his e-book Unthethered: https://www.readuntethered.com. If you haven’t read Untethered yet, it’s an incredibly impactful (and quick) read.

This podcast is a conversation with David Hsu, Linda Kahn, Jack Pearpoint, and Jo Krippenstapel, centered around the theme of social isolation and the universal drive for human connection. We dig into ideas around who is leading the effort to become a more tethered society, the greater impact that comes from doing things one-on-one, and how we might all begin to reach for a future of belonging in small, practical ways.   

We hope you enjoy!

“The more people understand their lives and part of their purpose as reaching for belonging, for themselves for their communities, there will be all sorts of innovations. ”

— David Hsu

 TRANSCRIPT:

Katie: Why do you think some people avoid the topic of social isolation?  

David: I think talking about social isolation forces you to deal with the reality that they’re all human problems, and human problems -- human dimensions are sometimes the most painful to confront.  

Linda: I think it’s because it’s so complex. People want it simple and it is so multifaceted and complex that there are no easy answers.  

Katie: So that’s Linda Khan and Jack Pearpoint, who both joined us for this podcast. You’ll hear from Jack next. Jack and Linda are long time advocates, presenters, movement builders of inclusion. They are inventors of person-centered approaches like PATH, MAPs, Circle of Friends and their ideas have really revolutionized the way that we tell stories and convey ideas when it comes to inclusion. 

Jack: And we are all looking, we have been trained to look for the 15-second-quick-fix and that’s not going to work. That’s not the nature of this issue, this is a human scale problem of global proportions. Which of course then shuts us down, until you sort of cut right back to well, actually it’s just the two of us and we can start right here right now. And it doesn’t matter where you start.  

David: Yeah, a lot of people in my world like to rush to policy or what can we do to raise awareness? As if awareness alone is something that changes things. 

So I think talking about social isolation, at least for me, clarifies that solutions lie in humans coming together and translating whatever we come up with into action. 

And that sounds vague but thinking about the ways in which people are isolated can help access I think why at root some of these issues like opioids, or suicide, or recidivism are such hard but I think solvable issues.  

Katie: So it offers a sense of clarity on a multitude of very complicated sometime personal issues but it kind of pinpoints something.  

David: Yeah and for me I mean I the people who have made a big impact on me, they sort of see that everyone is part of the solution and I think that a lot of the time we define problems in ways that make it seem that there are special people in society who can’t be a part of the solution and I just I want to fight against that. 

This is why with social isolation which is in many respects can be a health issue. I’ve seen in America us increasingly medicalizing it. And I want to go in a slightly different direction because I think we need more leaders not fewer, more specialized leaders.  

Katie: Ok, and that gets to your point of like policy and awareness, right, but what you are saying is it’s really more about people who are the most marginalized, vulnerable and isolated are the change makers actually, they have the answer.  

David: Yeah they are the real change makers. A lot of people that I work with through LA kitchen are people who are off the streets, have recovered from addiction, are home from 20 or 25 years of incarceration and its not a profound mystery to think why these people have a super well developed sense of the power and value of human connection because they’ve lacked it. Or they have against their choice been isolated from the community.  

Katie: Yeah, and I wonder if we can segue into the conversation around people being wasted, that people are being wasted. 

Jack: We have developed a society that throws people away and doesn’t even notice. 

And that doesn’t sound very good, we don’t think of ourselves aspeople who do that - but we’re doing it. And struggling to come to terms with that, so it’s a fascinating challenge that we’re all working on. And the way you have to come to terms with that is in a conversation with somebody who has been exploited. And that’s anybody anywhere, and the leadership for this change is not going to come from systems. If we figure this out, and I think we can, leadership is going to come from the margins. It’s going to be all the people we have systemically excluded, when we slow down enough to listen to them. And one of the, I think one of the most exciting capacities that whether its ex-offenders, or people who have been through residential schools and other institutions, or people with disabilities, if we make a space where it’s safe and we slow down enough to listen. They teach us to slow down and listen. And boy do we need that right now. 

So, there’s actual enormous unrealized capacity to resolve some of the most fundamental issues in our society, by slowing down to listen. And its available to any and all of us next door, around the corner, over coffee.  

Katie: So now you’re going to hear from Jo Krippenstapel who is also around the table for this podcast. Jo is one of our mentors here at Starfire. She has inspired many many many of the changes that we have made in the last ten years. I do want to apologize for the quality of audio you are about to hear from Jo, it isn’t the best but she has a lot of great things to say so listen up.  

Jo: One of the other ways that I think it connects is how universal this experience is of being untethered. Right, it’s not just “they” are untethered- it’s we are all untethered and for us as a society of people to make space to have those conversations about “what are the gifts of people who have been previously devalued?”

If I’m only tethered to people who are exactly like me, then I don’t have any way of making a stretch to people who have been homeless or imprisoned or come from another country. This is where it starts to come together. 

Linda: So that’s a really interesting point, and another way to think about who are your people and where are you spending time? Because it’s another way of noticing, who's missing? Who are you not connected to? Where are the people of difference? Who else do you know? How are you spending your time? When you think about who are your people, if you’re not tethered to.  

Katie: Yeah and I’d like to bring it into more of a definition around tethered that you offered in the primer, you talk about connection as a mixture of strong and weak ties and I loved how you held up weaker ties as actually the most important. And why I loved that illustration so much is what we see in people’s with disabilities lives who we talk to is that their weak ties are often minimal if not null. And that while they might have family, they may have moderately strong ties. A lot of times those moderately strong ties are staff, people who are paid to be in their life, or they’re other people with disabilities. So that’s the picture of isolation it’s the picture of segregation as well. So you know, the weaker ties why are they valuable, why are you saying that they’re indispensable?  

David: Yeah I honestly can’t remember where I learned the language of not being able to access worlds beyond your own but I like it because it’s often the weak ties that help us travel more, further. And in very practical ways, you know you think about searching for a job, searching for romance, searching for belonging and our families, our closest friends are important but they often only take us so far. If you think about highly networked highly powerful highly influential people they are people who have amassed an extensive networks of weak ties that they activate when they need to.

Everyone needs that network of weak ties. 

But I think there’s another part of it that is a little but more hedonistic, sort of pleasure-centric, which is just that - this is other people’s research, but at the end of life, a lot of the time when we think back on our lives, there are small moments of intimacy that we experience with people who we may have met once, maybe on our travels, maybe … who knows where. But who help us to feel human in a way that can last a lifetime and I think that’s extraordinary and it’s a thing that happens through weak ties often. So there’s this saying in sociology, the strength of weak ties like weak ties have outsized strength in human communities.  

Jo: What I love about this notion of weak ties is at least to me, it makes the whole effort more approachable. If you say “Gee, I notice you’re a little weak in the most intimate friends category why don’t you get three next year?” I kind of get anxious. But if you say, how about a dozen weak ties, over the next couple of months. I can start to feel some energy about that, feels very doable, feels a little interesting. Really feels different to me.   

Linda: Because it’s then about the power of showing up, of starting to discover, ok so let’s look at your neighborhood and your community, and what do you care about and where are you hanging out and starting to discover what people’s interests are. And just places to show up and hang out whether it’s become a regular coffee shop or something that you join because it's interest that you have, there’s weak ties.   

Jack: And that makes it very, very doable because anybody can do it, it’s not that difficult. So one of the terrors you know “in the dark of the night” issues of what’s happened to the work of many people - its been industrialized by many people. Not here, not at Starfire. But the pressure to, ok we need numbers we need them now we need them reportable with stats. And we’ve commodified the very thing that we were trying to do. Not we have but -- it has been done with well-intentioned people trying to figure it out... But the pressure to do it faster, do it more for less, those kinds of pressures are enormous and the pressure to not do that is enormous.  

David: I mean I still think -- I still care about doing it at a bigger scale.  

Jack: Oh yeah  

David: Faster, improving it I just think we can do that one-on-one, it just requires that everyone be a part of it. There’s lots of ways of to do that and mass storytelling is one of doing them. What I think is more critical than the scale at which we recruit is kind of the desire and a belief in bringing people in and showing them how useful whatever they bring is.  

Linda: I think one of the things that’s really exciting about the way David thinks about this is just people stepping into some action and responsibility. Thinking about so what can I do about this?

What’s my contribution to the very problem we have? I think that’s pretty interesting because you need the contributions and the solutions of everyone, including the people the most impacted. 

And so I think trying to make this everyone’s issue is really interesting. 

Katie: What I want to pull out a little bit more is this idea that who are the leaders of this movement? That yes it requires all of us and yes it requires the marginalized and it requires those who aren’t typical leaders. But it does require it does require leaders at the top also. And that’s part of your work David right is to talk to business leaders and to talk to philanthropists.  

David: Yeah I mean I definitely have an interest in engaging resourced people, but it’s mainly out of an interest to help them understand what types of leaders they should be supporting. Rather than thinking oh me as a philanthropist, I’m the answer to society. It’s much more as you scan the landscape which good philanthropist is like doing all the time, you can recognize Starfire. You can recognize the kind of work they’re doing.  

Jack: And when you make the kind of transition Starfire is making, which is incredible, courageous and wonderful you lose some of your traditional backing.  

David: Yes 
 
Katie: I think that’s kind of what I was going to is this idea that there are a lot of Executive Directors in place right now, who have been in that role for however many years, they are not going to change their model or shift their financial structure to do something risky, to change their model to be more impactful. And to give leadership to families like we’ve learned how to do at Starfire, and to give leadership to people with disabilities to do projects cool projects in their neighborhood. The executive directors that we know, a lot of times, say excuses more that have to do with putting the onus back on people with disabilities to say it’s their choice to be with each other, you know they deserve this day program or workshop because what else are they going to do? 

Jack: And we surveyed them and they say they like it.  

Katie: Yes, the data shows...that they’re all happy.  

David: That’s a really interesting point, there’s a lot of lying in the world of impact and in non-profits. In having, I mean I try to study big non-profits that are doing the kind of work that we all care about but seem to be doing it on a huge scale. For example, there are non-profits who I will not name like in LA who will serve huge numbers of people who are coming out of prison, and huge numbers of seniors and things like this -- and their annual reports look amazing. Right? And then the more you sort of learn and talk to people and dig you know there is some muckraking that is appropriate I think in this world. Impact, there are a lot of lies that are told about large scale impact. There are so many dysfunctions in our mass like mass-style interventions. Whether it’s for hunger or aging or mental health services, or any of these kinds of things, where well intention folks we end up creating solutions that still waste just only en mass. For me it’s slowly seeing this and connecting the dots and I think people who have worked over the years and decades in disabilities probably have the most powerful ways to help people understand this. 

So I think there are people who work one and one also, we shouldn’t be unfairly or inappropriately modest.

Or we can say oh it's messy it's not so tangible the impact. But I think when you consider the amount of lying that takes place, we should stand firm about tangible proven impact at the scale that we’re doing. We should also understand and be able to tell the story of how one to one work does have this amplifying power. And I think that -- I’m still in the process of figuring out how to do that.  

Katie: I'm glad to hear the struggle is still alive and well. And that there are still no answers yet but we’re doing the right work and that’s what’s important. One of the things you say in Untethered is that “We are reaching for the future of belonging,” we’re reaching for that. So you know you talk about how old ways of belonging need to be remade. Let’s talk about what’s emerging and how people can like somebody said here show up, all we have to do is start showing up. What are those patterned ways of living together that need to be encouraged? 

Jo: I think the local movement is very hopeful and when people experience it, it feels fun. You get such an immediate sense of something’s really different about this than my usual pattern. 

So there are so many examples of local: local food, local beer, local everything, right? When we lean into that I think we will start to tether ourselves to people who aren't exactly like ourselves.  

Katie: Lean into local, I like it.   

David: I mean for me reaching for this future of belonging is all about reaching. I love this T.S. Elliot line which is, “For us there is only the trying, the rest is not our business.” 

The more people understand their lives and part of their purpose as reaching for belonging, for themselves for their communities, there will be all sorts of innovations.

It feels weird to name certain things because they’re so infinite. Like they come to they come to life in so many ways, which is why it’ s beautiful. It’s about this overall pattern and it’s about this sense of chaos that we are trying to create. The best kind of chaos. People just trying things.  

Linda: It does have to do with the courage to engage. It involves some introspection. And then there does need to be ‘what’s my local action going to be?’ Including noticing when the future we’re leaning into is here. There will be moments where people experience belonging, and we better notice those too, it’s not out of our reach. It’s living now as well and being able to share those stories and notice the experiences and understand how did it happen. It always takes courage to do that, so I’m often thinking about stretch and courage and being honest to notice when I haven’t done it.  

Jack: If we just make a space, and it’s -- it is scary I agree. You mean I’ve got to meet new people? Yeah. But it’s not that difficult if you go for loose connections. If we make the assignment: by tomorrow morning by ten am you have to have a best friend for life, we’re not going to do very well. But there are an infinite number of loose connections, we don’t even have a clue how many there are out there. It is beyond our limited human capacity to even imagine. So anything goes if we make the space. I think my metaphor for it is we need to get our fingers in the dirt, dirt is universal, and you don’t know what the wonderment will be yet. And next time it will be a different array of goodies. But there are always goodies.  

Katie: And Jo, when you’ve said before this is finding new ways to spend time together, and it’s deciding to spend time together. And then it’s finding new ways on how to spend time together. I just love that simplicity there. It’s powerful. Jack, Linda, David, Jo, thank you so much for spending this time together, I really appreciate it.  

“We’ve learned that true safety comes from a form of love or a form of affection and care. It’s a shared obligation, it’s a reciprocal relationship.”

In this audio you’ll hear a conversation with Tim Vogt about the subject of safety, love, and the ‘spell of certain magic words.’

TRANSCRIPT:

Katie: Can you start us off and talk about what does safety get sold as in the service system today?

Tim: They’re selling us an idea of safety that nothing will ever happen to us. And what they’re doing is they’re trying to provide a cover for families and communities to say, “Great you’ve got it take care of it thank you.” We just kind of believe that there’s a balance. That there are some services that can provide some degree of safety. But we just don’t believe that that’s the only form. And that’s where we have the question of well, “Who’s got my back? Who’s making it more safe for me and with me?” And the thing we think about at Starfire it’s a great quote is that safety comes from the presence of many capable, caring glances. We need to be in the presence of a bunch of people that know us and see us and love us. And that’s

Actually what keeps us safe it’s not the locks on the doors it’s not the security systems it’s not the management requirements of the Medicaid system or the policies of the group home or the day program or the segregated farm that says they’re going to do this that or the other. None of those things actually provide true safety.

K: Yeah, I mean if we all wanted to live in the safety that people with disabilities have to live in, which is the safety of basically the State and policies, it would look like a military state. You know, it would look like people going, patrolling up and down the streets and us having to lock our doors at a certain time and all of us being sort of trapped in this really sterile, scheduled out environment and nobody would want that.

T: It’s always safer with more people.

K: Yeah.

T: So that’s the design of Starfire’s work that’s intentional. That true safety comes from a form of love or a form of affection and care. It’s a shared obligation, it’s a reciprocal relationship. I look out for your best interest because I care about you. And you look out for mine because you care about me.

K: So… in front of me is a book called christmas and purgatory and I’m going to read a quote. It says, “Some of mankind’s most terrible mistakes have been committed under the spell of certain magic words or phrases.” This book is filled with graphic and disturbing pictures of an institution. I’m bringing this book into the conversation because it shows us the worst of mankind of what can happen when we follow the lure of ‘safety’ over community.

 IMAGES FROM CHRISTMAS IN PURGATORY

T: Well, the book Christmas in Purgatory has always been powerful to me because it is, as you put it, graphic. And it’s also kinda interesting, at least from my perspective, some of the pictures rhyme with the pictures I see even today. In services for people and in the form of our services. It’s not as bad, so that book shows people naked in rooms with dozens of other people without any kind of toileting or any kind of cleanliness. It’s a really horrific kind of doral kind of essay on what was happening to thousands and millions of people with disabilities. But if you took just the form of it, people in rooms without much purpose, you’d largely see that very much alive today. The same pattern is still happening in day programs and workshops and group homes for people with disabilities. That’s really, I think very dangerous because it’s almost like it’s repackaged, it’s the same pattern but it’s got some new color to it and then we buy it. We’re giving them a version of the Christmas in purgatory support system which is here’s some walls that will largely keep out the monsters that we’re telling you that live outside of here but they’re still sitting there in a room with each other doing nothing that leads them outside of those walls. We’re not in the presence of these safe, caring, loving glances. We are at the real kind of mercy of the wardens of the institution, so to speak.

K: So are you saying that we haven’t designed anything really new out of the institution? We just kinda designed smaller, prettier institutions when we closed down places like Willowbrook?

T: That’s my perspective.

K: It seems like the intentions are maybe better this time around.

T: I think we are evolving. Like I do think that people are trying to recreate somewhat of a better mousetrap. It’s just still a trap and now we’re stepping into a space in time where our our laws are starting to say, ‘Well are these kinds of places the same as the institutions?’ and people are largely saying, ‘Yeah, they are in function and in form.’ So it doesn’t matter the intention of whether or not, it’s still based on a design and that design is still based on some assumptions that people with disabilities are a them, are a collective group of people. And that’s a dangerous thing because then everybody’s identity is lost. Most people with disabilities that I am aware of and hear about and talk to are in real danger of having no purpose as a citizen of their community. They are simply a client of nonprofits and governmental services and their entire purpose is lost to the world. And I think that’s a big danger that I think Starfire raises and says: ‘What about this person’s purpose? Why was this person born? And what’s the role of the family in a community to discover that, and what’s the role of the support system, service system to nurture that experience?’

And I don’t think that it’s bad to have a collaboration between service system and families and community. It’s for me, from my perspective, it’s over weighted toward just the services system and then a person with a disability almost gets kind of sent to this place or places that are gonna serve them and if it’s just to captivate them and keep them safe in our building, the shared purpose becomes clienthood. It becomes we all are in this building because we all have some sort of need that’s been defined by our medical records or our doctor’s evaluation. So volunteerism could be we discover purpose together as citizens and that’s what would build that kind of safety net of relationships that well I look out for you because I care about your purpose and I care that your gift to the world would be missing if you weren’t here.

The biggest danger from my perspective is nobody’s talking about this. We say “it’s their choice to be segregated” and in that case let ourselves off the hook for even addressing the complexity of the issue. I think that’s why Starfire’s story is so powerful. It’s just more honest. We’re talking about the complexity of things versus selling everybody on the idea that we can solve all your problems.

The most egregious examples I have of people with disabilities being in trouble is where there were very few people looking out for them. There was a woman who was being prostituted. She had $100,000 a year in services and the services couldn’t stop her from being prostituted. Another person I know lit a cup in fire in his group home and spent two years in State Penitentiary. He again, had a big waiver, big bunch of money behind him that  the service system and a bunch of nonprofits, including Starfire. Both these cases lined up and said we’ll keep you safe. We had three people that I always kind of paired together that came to our dances and our outings. One young man’s mother shot him up with morphine then shot herself up. She’s still alive but she’s in jail for the rest of her life and her son is dead. Another young woman would come to our dances and our outings and her mom laid her down in bed and shot her in the head and shot herself in the head and both of them are dead. Another mother stabbed her daughter who was autistic and then stabbed herself and set the house on fire. All three of those people came to our outings and our programs. They all participated in our dances. They all went bowling with us.

And I’m sure it’s more complicated than any of us know. But my question has always been did we fail them by not bringing in more people into that story? By telling them that our dances and outings were gonna answer all of their hopes and dreams and fears, did we take away the complexity and did we let ourselves off the hook for actually inviting in those capable glances that would have said, “Hey it seems like you’re not doing so good, could I spend an afternoon with your daughter or could you and I take a walk and just talk about it?” How do we grow a safety net of relationships – versus services?

K: A safety net that looks more like love? Outside of the service system, outside of a volunteer saying, “Let’s go on an outing together and sort of not taking them as seriously as a true friend. When families can see that, ‘Hey my son or daughter is loved,’ that creates safety.

T: I think that if I fear being rejected, it’s largely because I’ve had that experience before right? And we know that people with disabilities are rejected a lot of ways throughout their lives. So are their families and if we don’t acknowledge that. Then we ask the question of how do we mitigate against that rejection? How do we build less rejection? That would be really good work but to simply say we’re gonna protect you from ever having to worry about rejection doesn’t actually get at the antidote to rejection. It just takes away the possibility of the hurt coming.

K: Let’s address the idea that people with disabilities often need support. Not every person with disabilities has the same needs or challenges but across the board there is a need for support that might look like a staff person, right? I think that what we’re saying here is not to say that someday that the community will replace every need for the service system. Is that right?

T: I don’t want anyone to ever think that a friend is going to replace paid support or a friend’s gonna replace family. However, we can’t think the service system is the sole system of support. We have to believe that some people can learn ways to support each other outside of services. So for example, if someone needs a feeding tube, that might lay outside the technical expertise or even something that would be unsafe. We wouldn’t want me to change someone’s feeding tube, I could easily cause an infection or harm to that person. However, there are lot of things we could do together that don’t require me changing a feeding tube. The problem is services own every aspect of a person’s life. I always ask families, ‘Were you trained to have a kid with a disability or did they just fall into your lap?’ They say we just learned. So family members are just citizens that learned the role of caregiver, so that means other citizens can learn. I just don’t like discounting the possibility that citizens can learn these things. So services have to be more creative and individualized so they can consider each individual’s design question. What is the design question that arises from this person’s life? Or their purpose. How might we help support facilitate that is an individualized design question? They also have to assume that someone from the community should and could be in this person’s life in a variety of different ways and the service workers have to own their own limitations.

K: One of the last quotes here in the Christmas at Purgatory book says, “The greatest discovery of my generation is that human beings can alter their lives by altering their attitudes of mind.” I think that is a big part of what we’re talking about. If we keep the same mindsets we’re gonna continue to pump out the same story, which is an old story of people with disabilities.

T: I think people can do what they want. If they want to recreate the outings or they want to recreate day programs. It’s a free country, right? Nobody can stop them, and yeah there might be people that say that’s a great idea for me or my family member. I mean those just aren’t the people we’re working with. We are working with people that say, “I thirst for a future and I believe in that future, and I’m willing to work with you.”

K: How should people change their mindsets about safety? What is the sort of underlying thing you think that needs to just shift?

T: I think they just have to start getting out there and meeting people. I think they have to start really believing that there are about thirty people out there that are going to be their future best friends that they haven’t met yet. And the only way to meet them is to start meeting them, and then the only way to get them to be best friends is to start investing in those people. And then just believe in it and act like you believe it and sure enough it becomes true.

K: Cool. Anything else?

T: It’s complicated isn’t it?

How do you want to spend your time? How does the way you spend your time impact others? When is time with others “wasted”?

Listen to hear Tim Vogt discuss how time spent with people with disabilities should be valued as “sacred.”

“Time matters so much… We have come to understand that the time we have with people with disabilities is sacred. It represents their life.”

Full Transcript:

Katie: So, what does it mean to spend a lifetime with people?

Tim: There’s a great metaphor from C.S. Lewis in his book “The Four Loves,” where he talks about the difference between approach and nearness, and he talks about this in the context of faith and being close to God. But I think it applies, the way he describes it he says,

“I want you to imagine that you’re on a path, and your path ends at a village, and the village has a warm bath and a cup of tea and all your friends are there, and there is a fire and you’re in the mountains and you’re on this path and it’s cold and it’s rainy and your coming to this cliff, and you’re at the top of the cliff, and below you you can see the village where you are going, the baths and the tea and the friends. It’s waiting for you. But there is no way to get to it, you’re near it, you can see it, you can smell the smoke from the fire. But you can’t fly and you can’t climb down the cliff. The only way to get there is a five-mile loop that goes around the whole valley, and actually every step you take for a while is going to get you further from the village, but interestingly enough you’re approaching your goal more than you were when you were near it.”

The question really is about what’s the goal. And what it means to get there. When I think about what does it mean, especially in our work in Starfire, to help people grow towards each other, it means more than just being near. The path is actually the thing we have to keep going along. We have to travel that. And time matters there it might take longer, it will take longer. We can’t actually get closer unless we spend a lot of time together. Isn’t that a great metaphor?

K: It is.

T: Its really helpful to me

K: Yeah. Why do people have a hard time committing to a long-haul?

T: Well I’m really interested these days in what happens if we don’t have to commit to it but we just continue travel together. Because, time is just really interested in that, if we go 30 years in the future, and we say we’ve been best friends, or we’ve been married, or we’ve been great neighbors. We’d look back and say, what kinds of things did we do to keep that alive. It was things like forgive each other, and grow separately but come back together, and bring new people in to introduce and celebrate together. We’d have to do all these things that probably require us to be uncomfortable. But when we are in the future looking back, its easy to say: “Oh yeah that’s how it happened,” but it’s hard for us to see it that way. That’s why time matters so much, is that it’s the passing of time that allows all of that stuff to happen.

K: Sometimes more time does not equal quality time. So with Starfire we have actually started working less with people, we spend less time with people. And we out in more quality during the week more than maybe we did with the day program days.

T: It was just a way we thought about peoples lives and our purpose. Our whole purpose was to almost fill time, and now it is to invest it in that future story, that future goal. We have just come to understand that the time that we have with people with disabilities is sacred. It represents their life. And we spend a few hours a week building that life. A connected, vibrant, life with lots of friends who care about me.

K: So you’re saying that the goal you have in mind can determine the way you spend your time. And the goal that we have is different than keeping people safe and happy now it’s a full rich life.

T: Yeah, its some what of an understanding, and it’s something to own up to. We didn’t actually imagine the same kind of lives for people with disabilities than that we imagined for ourselves. And somehow we imagined that their purpose was a very finite, you know, existence. That was very much in the present of managing them or just keeping them safe and happy. When we started to say “oh we’ve been thinking about this all wrong. Each of these people have a unique purpose.” Then we had to, one come to terms how we assumed very little was possible for them. And once when we did that, we had to commit ourselves to what was possible. Then we had to understand that’s generally looks like a connected, included, participatory future. But, again its unique and wild for each person. So we had to design our services in a way that use time to get there. When we started to think about what that looks like, it takes a lifetime to build a life so we had to figure out how to invest our time and partnership with people in a sacred way that lead to that future. And allow the space for surprise and new relationships and affection to percolate.

K: So that’s that three hours that we spend a week instead of the four days.

T: Yup. So instead of four days its three hours of invested time, and the week in between actually really matters, because we become new over that week and the story becomes a little deeper. Week by week it gets deeper and deeper. Its approaches that vision of the future. It approaches that forty to fifty-year story. You can only chip away at that a step at a time, or a day at a time week at a time, you can’t knock it all out in a week or a month. It just doesn’t work like that.

Close your eyes and think of a time you felt a "spark" with someone or something. Was it the first time you held a microphone? The time you met your best friend? Why is this idea of a "spark" important to our work in the community around people with disabilities?

Listen below to hear Tim Vogt's 3-question interview on this series' theme with host, Katie Bachmeyer.

Transcript:

Katie: So, tell me about a time you saw a spark at Starfire.

Tim: There was a young man that was coming here, Kyle, and he would walk around our day program, and he would walk in a very different way. He would turn his toes inward and make these sideways steps, and he would kind of walk around corners very intentionally. And, I remember, at the time we had a few staff who thought this was a really big problem – that he was acting strangely or it wasn’t appropriate. One staff, a guy named Jon, had noticed that this young man had kind of an interest in martial arts, in ninja-kind of stories. And Jon actually noticed that what Kyle was doing was not strange or weird, it was actually a form of martial arts.

So, the first spark was the noticing of that staff, saying, “Huh? I wonder if this isn’t just weird or this isn’t just strange or this isn’t just a behavior problem. What if this is an intentional clue into who this person really is? Maybe this is one form of communication of who they think they are and who they were born to be.” As a result, another staff started to invite in a local martial arts master to teach for the reason of cultivating this interest that was noticed with this young man. So, Kyle gets an opportunity now, because of these two staff, to be in the presence of somebody who could be a mentor, or a sensei if you will, to his unfolding or emerging identity around the martial arts.

A few months later, Kyle is having a planning session.  His family is coming and our staff are gonna be there. We’re thinking about who is Kyle. And, Bridget says, “We should be inviting Master Korchak, the martial artist that had been teaching the class. He should come and help us think about Kyle’s future.” So again, here’s the next spark, the idea that Master Korchak is not only here to teach about martial arts but he might come to a meeting to help us all imagine what Kyle’s future could look like. And he carries a really interesting part of it, which is this interest, a passion that Kyle has for martial arts. And he knows a lot about that, he’s dedicated his whole life and career to this. So, he’d be a logical person to invite in.

So, in the planning session, they started talking about martial arts and when it came up that Kyle was interested. And the whole circle, everybody in the room – the family and our staff kind of came up with the idea that there’s some Special Olympics classes they could explore around the martial arts and that’s a legitimate thing for people to think of. However, Master Korchak said, “I think he could do my class. I do it every Monday and I think he could come. He’s already good enough to be a part of that. It’s a self-directed journey for everyone that’s in the class, and Kyle’s got enough of an interest and enough of capabilities to participate.”

So, right there you see another spark: validation of Kyle’s passion by an expert in his field, and an invitation out of the disability world, or the special world, and into the regular world, the regular martial arts class. And that really helped that family, I imagine, that everything they believed and knew about him, which is that he deserved a full life and a community was actually true. That there was somebody out there who believed what they believed. So again, you see this fanning of the flames.

So this was 2012, when all this happens, and Kyle starts taking these classes, and we just received an email about a month ago that Kyle has his black belt in gumdo. And that’s actually a story that we’re gonna share next on this series. It took a lot of people to hold the flame of his passion. Kyle, himself, of course, insisting on a life that relates to martial arts. It was our staff, the paid people in Kyle’s life, people in the martial arts community, as well as it was his family. So, it was everybody kind of acting with intention and helping this thing to move forward.

That’s one path, is what happens when a bunch of people keep contributing in little ways over time. Also important to notice, is how very fragile each point along that journey is. Is that it could have been smothered by the doubt of a staff, the certainty of a staff, the doubt of the family, the fear of a community member, lack of ambiguity from Kyle about where does this even go, why invest in this. So, there’s so many places along the story where it could’ve all fallen apart. To us at Starfire, the biggest tragedy would be that a story like this would be lost. And, we actually think that this happen an awful lot. People’s stories get lost because we’re not fanning the flames, and we accidentally smother the points at which these kinds of stories and lives could emerge. So, we really believe that when you notice a spark, the key is to notice it and then to notice your own doubts or worries or concerns, and then to tamper those a little bit, and provide room for that spark to turn into a flame, to catch fire, to spread wildly in a way that would really ignite someone’s whole community, their whole family, their whole selves, their whole future.

What does it mean to "stay?" Why is this important to our work in the community around people with disabilities? Listen to Tim Vogt's 3-question interview with host, Katie Bachmeyer.

Katie: So, why is the concept of staying important to Starfire’s work?

Tim: There is a great quote by Wendell Berry, and he talks about the marriage vows and they are not for better and for richer and for health, they are for better or worse, richer or poorer, sickness and health. He says that in staying we learn something closer to the truth which is that not everything in life is happy, and not everything in life is great. I think people with disabilities and their families that I know, relate that there is a great joy in life, especially when they get included and supported and loved in a way that we at Starfire hope that they could be. That continues to be a struggle for them and their families. So, if we can think about staying in solidarity, and in fraternity, and in relationship with people, we can be with them in that struggle, and it can lead to some good things, but it could be tough, many tough days.

I also think that when we think about “staying” we think about that same quote reminding us that there’s going to ups and downs and it might be tempting to leave. Leaving is an assumption that somewhere else is going to be better, but staying seems to be an invitation and a commitment to making this place better or this life better or this relationship better. So staying implies, in the depth of that concept, that I’m not just going to get out of here; I’m not going to leave you or this place. I am going to be here. There are going to ups and downs and good days and bad days, but I am still going to be here. So I think staying through those good days and bad days, and through the struggles and through the joys, and paying attention to the closer you get to the truth of what life is all about, what inclusion is all about.

Inclusion is not all happy and fun; it means I accept you as you are. 

I believe you can do better, but I accept you as you are. And you belong already; there is no need for you to have to earn it or prove that you are valuable, more valuable than you already are, so the idea of stay relates to peace. It relates to rest; it relates to some sort of satisfaction, and it relates to time in a really great way that I chose to commit myself to people, or a place, or to an idea, in a way that just gives the long story a chance to unfold. People with disabilities have a really small degree of imagination of story and imagination around their lives. There is a very short story about disability. It fits in this box and goes here and these people go here and that is what defines their life. So it is not a very big story and if we can stay with people and help nurture and participate in their journey and struggle for a better life, then we can see that there is a better story. You have to stay to see that better story.

Katie: Is it important to talk about staying because that isn’t a common reality for people with disabilities for in their lives that people often do not “stay”?

Tim: Yeah, I mean, when we look at the people that we support and the people that we love and know with disabilities, we see a lot of leaving in their lives. You’ve got professionals that are in and out depending on their next job, or if they got fired or promoted or left. So, there’s this constant turnover. And if we’re being really honest, we hear that there’s a lot of absence of community and rejection sometimes for people with disabilities and their families. And, an absence and rejection is a leaving of sorts. Right? Like, you’re left alone. We’re outta here. We’re not gonna be with you anymore. So, when you’ve got a disability, you’ve got this turnover almost in your life. Your social stories are very short. People are in it for a few minutes or a few hours or a few weeks or months as professionals, they’re not really in it for a long period of time. So, the counter, the antidote would be staying, the people that are there for a long time.

There’s also just an interesting, I would call it a creative limitation, that people with disabilities and their families are inviting us into.

A lot of people I know who have disabilities can’t drive. And so, their mobility is limited. They might not be able up and move to a new city for college because college isn’t even an option. Or, they would lose their funding if they moved out of state. Or, the public transportation system doesn’t actually travel between cities, you know. So, the mobility of people with disabilities is really physically limited, and the options of moving about are limited. So, then if we’re asking the question, “How might someone with a disability have a good life?” one of the factors is we that we think the reality is they’re going to be limited in how they move about.

So, we would want to develop local networks and really have people who have stayed around them be part of the story, that would have known them for a long time. The last aspect of stay that I can think of that really matters is that staying relates to taking care of a place and the people in that place. So, there’s another great essay that Wendell Berry wrote about his family’s farm and the generations of his family that have taken care of that place. And there’s a, by taking care of that place, they’re taking care of the people around them and of that place too. So, people who take care of a neighborhood or take care of a block, or take care of a city; because they’ve lived there their whole lives, those are the kind of people who create a culture where somebody’s looking after the place and the people in it.

And, if we could have more people stay and own the caretaking of places, and root themselves deeply, they would grow big networks, and they would, over time, probably build a culture that was very conducive to the lives of people with disabilities and that culture.

 Katie: So, last question. Who do you think is called to stay? And, how do they do that?

 Tim: I think we’re all called to stay. However, I don’t think that any of us are required to stay. There are good reasons for moving on from relationships and places. You can’t afford it, or the person you’re committed to turns out not to be the person that you thought they were, and that’s dangerous. But, I think that the problem is that if we don’t leave the potential for staying open, then we don’t ever invest deeply. We don’t get to know the people around us because we’re already out the door. We’re buying this next house in order to flip it in five years, and move to a new place. So, why would we invest in each other? Why would we care about each other’s well-being? Why would we look out for our neighbors? Why would we bring flowers to the woman whose husband passed away across the street? Why would we, you know, get to know the kids on our block if we’re gonna be gone in a few years’ time? So, the temporary-ness that we start with is key. Or the permanency.

If we start with an idea that this might be a place that I stay, and we find out that it’s not, that’s great because the assumption was there to begin with, and we invested as if we were going to stay. I once met a woman who really challenged me on that. And she said, “I was a military kid. I had to move.” She said, “And, I’m still a military wife now.” And she said, “I still have to move.” And she said, “But every place I go, I invest like I’m gonna be there for the rest of my life.” That was awesome and beautiful.

She didn’t forego relationships, she didn’t create an absence in the neighborhood or in the families around her by assuming that she would be gone. She actively, intentionally said I’m going to invest, because I know I’m gonna be gone but I still need to take care of this place by investing in it as though I’m gonna live here myself. 

So, if I’m a person with a disability and I don’t get to move, but everybody around me is flipping their houses every five years, and everybody is of the mindset that they’re outta here in a few years, then quickly my condition deteriorates, and I could be stuck. And, instead of staying, I’m stuck. Everybody around me – no one knows me. No one’s built a great garden that I can be a part of. Nobody knows when my birthday is. And, I’m not a part of their world either.