What's at Stake? | with Denny Burger

This show is all about building connections and building community, but what's at stake if we don't? On this episode, you'll hear from Denny and his story about Don, an irascible old coot as he likes to affectionately call him, and how he helped Don get back to his community roots after being institutionalized for 30 years. This is such an important story to remember how far we have come. But also what's at stake if we don't do this work. Thanks for listening.

Denny: [00:00:41] Checking one, two, three. 

Katie: [00:00:42] Great. So we can get started.

Denny: [00:00:44] Well, hi, my name is Denny Berger. I'm retired. I serve on the Board of Good Life Networks and  also I'm a volunteer for ProKids as a CASA.

And so what else am I supposed to talk about? 

Katie: [00:00:56] So what is something about community building or being part of the community that you're interested in or passionate about?

Denny: [00:01:04] I guess my orientation comes a lot from when I was working. I worked with people with intellectual and other kinds of developmental disabilities in a county-based service system.

 I met a lot of people over the years who lived in institutions or at home with their families or were moving out of institutions and into the community, or were just finding their own place for the first time. And in all those cases, it's great to know your neighbors. It's great to have some connection with the people around you.

So I would say community building to me is knowing your neighbors, having a relationship with them, looking out for each other, especially people who tend to be devalued or labeled with some kind of disability, it's really important in that sense. 

Katie: [00:02:00] Because they're typically not included? Or, or why would you say it's...? 

Denny: [00:02:05] Well, they're typically not included or they're at risk of being  isolated being lonely and  being dependent on paid staff for anything they do. And that's not always the best circumstances to be in. 

Katie: [00:02:22] Yeah. I think there's a pretty powerful story that you have around this. So let's jump into how you came to know your friend Don. 

Denny: [00:02:32] Don. So this was probably in the late nineties.  I met this guy who lived in, a state-operated facility. And was the kind of situation where people live 16 to a so-called cottage, but really cottage is a euphemism and there were about eight or nine so-called cottages, so you can do the math. It was a big institution essentially. So this guy that I met through some mutual friends, had a compelling, well, this came out over time, but essentially what he told me was needed to get out of here. He needed to get out of where he lived because he belonged on Gracely Drive. And Gracely Drive was a street in Sayler Park where he grew up.

Right on the river, a river community, nice little town, really. You know, walkable streets. And it's the kind of thing you do know your neighbors and everybody knows everybody and people have lived there for generations.

So it is, it's a nice little community.  And Don lived there with his parents until he was about 30. As kid, I'm sure he was a real active, he loved to fish. He rode his bike around. I don't what kind of friendships he had in the neighborhood as a kid. I don't know, but I saw a lot of pictures of him with his pants rolled up wading in the river, and he always talked about riding the Anderson Ferry. He lived close to that. That's sort of a Cincinnati landmark that goes over the river back and forth quite a few times a day. But when I met Don, he was probably 60, 59, 60 years old.

Katie: [00:04:25] Right, right. So there was a time where he lived in his home in Sayler Park, on Gracely Drive. And then there was a time when he lived in this institution, then it ended up being about half of his life was spent in a community and the other half in an institution. Tell me about that time period that Don lived and what that looked like, for him to move to an institution. Why was that a choice that his parents ended up making? 

Denny: [00:04:49] It was probably, I forget exactly when he was born sometime in the thirties, maybe mid to late thirties.  I think he probably was at times challenging, you know?  But as his parents aged, I think, the family doctor recommended that Don would be better off. He was kind of a handful and his parents, I think his dad had died by this time and maybe it was just his mom. I can't remember. But the doctor essentially recommended that Don be placed at Orient, which was a large state-run institution, essentially. And that would be better for him. 

Katie: [00:05:31] How old was he at that point? 

Denny: [00:05:32] He was like 30.  Yeah. And so he moved to this state institution and his mom followed the doctor's advice. I think she was a little sad about it, but ...

Katie: [00:05:45] It sounded like for many years she was able to bat off the doctor's advice and say, "No, this is my son. He's staying with us."  But then after 30 years, and when she started aging, that was the choice that she was presented with and felt that was the only choice she had left. Is that right? 

Denny: [00:06:05] The other factor was "What's going to happen to him when I'm gone?"  You know, and I think in her mind, she felt like he would be safer in the institution because she probably didn't want to ask the sister to be responsible for Don. She had her own life, her own children, et cetera. And so I think it was with the best of intentions that she was able to feel more secure that Don will be in a safe place and, "I don't have to worry about him."

Katie: [00:06:36] And there was a story about institutions before the real story came out, which was that it is a safe place and this is where people can be in community with people, quote, unquote, like them. 

Denny: [00:06:46] Yeah, that's the myth. 

Katie: [00:06:48] Yeah. That was the story being kind of marketed at that time before a lot of the injustices and absurdities came out into the open and you had the Willowbrook Documentary and  Robert Kennedy coming out and revealing a lot of the atrocities.

So this was prior to that and Don was living in the institution then for about 30 years?

Denny: [00:07:10] He lived in Orient until, then Orient got closed as part of the state institutionalization push.  

Katie: [00:07:18] Deinstitutionalization push.

Denny: [00:07:21] Sorry. Yes. And, when that closed, I remember just busloads of people, in Butler County, there was a place called Fairfield Center, which was funded. Basically,  it was an institution too, but it was more privately operated. It wasn't operated by the state of Ohio. It was funded by the state of Ohio. And, so he moved in there and that was, you know, I don't know, 120 people, something like that, living there. So it was just a smaller version of where he had been, with newer buildings. Less gothic.

Katie: [00:07:53] It sounds like there's a pattern here in our society that we...

Denny: [00:07:57] The mindset used to be that these people need special protection and they need to be congregated and segregated because there was  all these myths about they were a burden. They were pitiable. There was the narrative of sexual deviation and bad behavior, all that. So that was in part the  dysfunctional reasons why people were lumped together. 

Katie: [00:08:26] Sure. 

Denny: [00:08:27] So yeah, Don that's where he was living when I met him.

Katie: [00:08:30] Okay. And it sounds like, kind of in that time period, a lot of his past and Sayler Park stayed with him. 

Denny: [00:08:36] It never went away. It never went away. He always said, apparently, I've talked to other people that knew him longer than I had, and he would always say, "I belong on Gracely Drive. I don't belong here. I want to live in a group home someplace other than here."  So he always wanted to return. He never forgot his home. And I think he did romanticize and idealize going home. You know, he thought in his mind his life would take up where it left off before he was moved into Orient. 

But 30  years went by and you can't go back, you know? 

Katie: [00:09:13] A lot happens in three decades, to a town and to people. 

Denny: [00:09:18] People died. His mom died, you know, his sister was still alive and she didn't live in Sayler Park, but she was still in the community, in the Greater Cincinnati area. 

Katie: [00:09:26] And it shows  he was just completely out of touch. You know, hadn't gone back, hadn't visited maybe nobody from his family visited?

Denny: [00:09:35] No. Yeah. Not as far as I know. 

Katie: [00:09:37] So just completely cut off and that is heartbreaking to think that somebody would have...

Denny: [00:09:44] And he remembered all, you know, like people from the neighborhood. He told me stories about, his next door neighbor, Bill and his wife,  and you know how they would do things together or he would go over there and just hang out with them sometimes and they would welcome him into their home.  And he remembered that feeling of being somewhere where people know you. They know who you are. They care about you. And he lost that when he moved into the institution. It was very anonymous, you know? 

Katie: [00:10:17] Well, and I think the story of resilience there is that those experiences actually were, in some ways, probably a buoy for him throughout that entire time period, where he could remember and think back on a time when things were different and that in some ways that was a mantra that kept him alive or resilient or surviving.

Denny: [00:10:37] I think that's right. He did it, it kind of, he was a survivor  and part of his gift was he motivated people to try to help him. And I mean, we were able to put ourselves in, or speaking for myself, I put myself in very uncomfortable situations at that time on Don's behalf. 

Katie: [00:10:56] Well, tell me how you ended up finding a way to support him to getting back home. How did that process begin? 

Denny: [00:11:02] Well, there was like a little group of people, and we were all sorta like service-y service workers, to be honest, but I spent a lot of time going back to Sayler Park, with and without Don, you know, like meeting, actually, I met his nephew who lived in the house where he grew up and he really didn't really want his crazy uncle back there. That's kind of exactly what he said. 

Katie: [00:11:25] Wow. Well, and let's just pause for a second there, because it just tells so much about the story that had been told about Don. "Yeah, he's gone. He's put away, but he was crazy."

Denny: [00:11:38] "He was crazy. He's better off where he is."

Katie: [00:11:41] Yeah. So, you know, having not even probably known him, you said he was his nephew? I mean, he was probably really young when he left. So just it's the story that gets told to kind of almost make things okay. 

Denny: [00:11:52] Exactly. That was the narrative. Don was a crazy guy and, he was better off where he was, He was with his own type of people, et cetera, all that. But in terms of what else, I think I just got to know Don really well. We spent a lot of time together, and he cracked me up. He came to my house for holidays. He came for Thanksgiving. He came over at Christmas time, he didn't go anywhere.  

Katie: [00:12:16] At that time, was that a typical thing for a case manager to bring somebody home that they worked for, on holidays? 

Denny: [00:12:24] Some people did. I wouldn't say it was unheard of, but you know, it was not typical. 

Katie: [00:12:29] Right. So clearly Don and you had kind of hit it off and you weren't bringing everybody that you supported?

Denny: [00:12:36] Yeah, my kids got to know him, you know, he'd call up and yell into the phone. And, you know, my kids couldn't understand him. And they'd go, "Dad, it's Don"-  some loud guy on the phone going " Dennis, the old man"...  he was like, "Okay, I think it's for you, Dad." But, so I mean, we had a strong affection for each other. One of the bad habits Don picked up at the institution was he smoked a lot. And I mean, that was like one of his main things,  smoking.  I think a lot of people that live in institutions, they guard their possessions because things get stolen, you know? So he really, especially, I think cigarettes, you know, if you think about institutions, unfortunately, if you think about jail, cigarettes are almost like a form of currency, you know? And so I think that was similar where he lived and they had a lot of importance to him and he developed some things like he would smoke cigarettes up his nose instead of his mouth which didn't help portray him as a typical person, but it was something that is more unusual behaviors are more the norm in institutions, nobody comments on them. There's high tolerance for anything like that. 

Katie: [00:14:00] Right. And low expectations. Yeah, no expectations. So you all came together as a group of service workers and you held a kind of a meeting around Don's passions and interests and his dream, and one of the things that I love that came up during that meeting as one of his biggest strengths was that he's an accomplished smoker.

Denny: [00:14:21] Very accomplished smoker. Yeah. 

Katie: [00:14:23] So you take these things that were typically seen as odd behaviors or odd absurdities about Don and you find the strengths in him. And so what other things came out of that? And what were the steps that were taken after that meeting that got him home? 

Denny: [00:14:42] So the defining comment that came out of that is, "I want my own key. I want my own key. "

And that had a lot of resonance for everyone, I think, because, it really indicated such a yearning for home and my own place, or at least away from where I live now with all these other people that I don't want to be around. 

Katie: [00:15:08] Certainly he had roommates and yeah, no privacy. 

Denny: [00:15:12] The only people that had roommates were the people that were violent. 

Katie: [00:15:16] Okay. So that's one way to get your own 

Denny: [00:15:18] room.

Exactly. People figure that out pretty quick. Like the woman that told me, I heard her talking to another woman and said, "Don't ever tell them what you like. They'll make you earn it". Overheard that, you know? And that's kinda like, yeah, there you go. I mean, so people who live in institutions figure out the culture, you know, they may have an identified disability, but that doesn't mean they're not perceptive and they don't understand what's happening.

But anyway, he was such a survivor. And so, his strengths: accomplished smoker, a strong survival instinct and ability to mobilize people on his behalf, because we all felt compelled to help Don,  because his passion was so strong. You know, he had such a long memory and a strong passion to be living back where he grew up, to rediscover his lost life, I would say. 

 Don and I  did speaking engagements together. We went around and talked and Don had a compelling story to tell. So he became sort of a minor celebrity in DD circles a little bit. And as a result, he lived in Butler County, but the superintendent at the time from Hamilton County was very touched by his story and contacted me and said she would allocate funds for Don to move out of the institution and live in Hamilton County. 

Katie: [00:16:39] And back to his strengths that he knows how to organize people around what he needs. 

Denny: [00:16:44] He knew how to motivate people, you know? And he knew how to touch people.  He was, again, that whole narrative of "I'm a survivor. I'm going to outlive this crap. I'm getting out of here."  It really did  mobilize people and, it mobilized the superintendent at the time. 

Katie: [00:17:01] Yeah. It gives me chills to think about somebody who knew what he wanted all those years. 

Denny: [00:17:06] He had a strong yearning, you know, and he never used these words, but I think he felt like his life had been stolen from him and he wanted it back and he was not going to rest until he got it back. 

Katie: [00:17:20] Absolutely. So, the superintendent gives him this ticket out? 

Denny: [00:17:25] Well, they found a provider that agreed to provide services and support Don living in the community. An apartment was found on Gracely Drive, where he wanted to live, but really what he wanted was to live back in the house he grew up in, where nephew Ricky was living and he wanted nothing to do with Don. As a matter of fact, one time Don and I were walking down Gracely Drive and Ricky drove by in his car and pulled over and said, "What are you guys doing here?" I said, "We're looking for an apartment for Don".  And he was not pleased, he felt like, you know, and that was his family, but again, he was young.

He totally internalized the whole narrative of the crazy uncle who belonged in the institution. Yeah. And he didn't know the real Don. 

Katie: [00:18:11] There's fear in that. There's all kinds of things to unpack about. 

Denny: [00:18:14] Resentment. Like "Why is he back? He's got a claim to this house".  

Katie: [00:18:19] Public shame or...  There's something  inside that nephew too. Anytime there's a way into somebody's heart to see somebody as human, that is the way to reform or treat somebody family member.  That hope, I even hear that nephew. And I think if he knew Don the way you knew him, his heart could change.

And  it's when we're in relationship, it's when we're in community, that hearts are changed, not when we keep each other separate in systems and institutions. Clearly that's the division. Yeah. 

Denny: [00:18:53] You have to be known. I mean, you know, that's what makes safety in the community is when you know your neighbors. You're known by people. People look out for you. You look out for them.

There's are reciprocal relationship. 

Katie: [00:19:07] So you found an apartment on Gracely Drive?

Denny: [00:19:09] He moved in. I remember, I drove over and picked him up. There's a funny photograph. I think it's funny, of Don looking all pissed off cause he's with three staff and that like one is the social, the young, sorry, I don't mean to be stereotypical here, but the young perky social worker who's about 22. Then there's the nurse, who's worked with Don for a long time and she's smiling. And then there's the direct service staff from the institution that is looking just as like pissed off as Don is. It's funny, you know. 

Katie: [00:19:45] That picture is in the show notes or it's linked somehow to this podcast, so if you want to check it out, you can see it. 

Denny: [00:19:51] But  I think, one of the things about direct service staff during this era, and I don't want to, you know, tar everyone with this brush. I mean, there's lots of great direct service, support staff, wonderful people that are doing everything for the right reasons.

But in this era in large institutions, especially I think the staff and this is probably still true for a lot of staff, but they would tend to focus on the deficiencies of people that they purportedly supported, rather than the strengths, the gifts, the passions, the skills, the interests. You know, they weren't interested, they didn't see any of that. They just saw a guy that smoked cigarettes up his nose. He had no teeth,by the way, that were all pulled out in the institution. I don't know why, but he had not a tooth in his head. You know, he did have false teeth, but he refused to wear them,  in typical Don irascible fashion.  That was part of the difficulty, I think, for a lot of staff.

Katie: [00:20:55] Yeah. And his face at the cottage institution when he was leaving or was it the cottage there? 

Denny: [00:21:00] Yeah, yeah, yeah. Yeah. He didn't look happy. He looked irritated in that photograph. 

Katie: [00:21:05] Then he gets to Gracely Drive?

Denny: [00:21:06] But he gets to Gracely Drive. You know, we got him a key. And, you know, something he could wear around his neck,because that's what he wanted, even though that's not the most typical thing. And it kind of identifies him maybe as you know, we were working on changing that. 

Katie: [00:21:20] Just imagery-wise, you mean? 

Denny: [00:21:21] It's not the best.

 Exactly. Yeah. I mean, you know, most people don't have a key on a ring around their neck, you know, and a chain around their neck. But, anyway, that's where we started. And he was really happy. He had an easy chair in there. And he was pretty happy to be there. But to him, Gracely Drive meant moving back to the house he grew up in. So there was that. 

Katie: [00:21:45] 30 years ago, right? 

Denny: [00:21:46] Exactly. But Ricky was living  there and that wasn't happening. 

Katie: [00:21:51] Yeah. Real world isn't always what it is in our minds and in our dreams and what we what we aspire for.  So when you started walking around the neighborhood with Don to kind of get acclimated to this new world of 30 years later Sayler Park, did you find any people who knew him?

Denny: [00:22:10] Well, the next door neighbors, there are the people that lived a couple doors down from that house. They were elderly now, but we stopped over to see them and they were happy that Don was back and we had tea and cookies 

Katie: [00:22:23] Are these the same neighbors that he used to talk about?

Denny: [00:22:25] Yeah. 

Katie: [00:22:25] Oh, wow. 

Denny: [00:22:26] Yeah, they were still alive. Although, Bill died shortly thereafter, the husband.  They were both  in their probably mid to late eighties, I would think.  So they weren't getting out and about too much. They were pretty much home bodies. 

Katie: [00:22:39] What a beautiful reunion. Were they surprised to see him?

Denny: [00:22:45] Well, I had had contact with them. That was part of the legwork I had done earlier, notifying them  and contacting them.  And we had been over to visit them before. 

Katie: [00:22:55] So what was the reunion like when you first went? 

Denny: [00:22:58] It was touching. Yeah. It was touching. There was a little hug from the, I forget the wife's name now, Harriett, and maybe .  But yeah, it was very sweet and Don was happy to see her and I think he felt a little bit of a homecoming then, so that was good. Yeah, that was great. 

Katie: [00:23:17] Tell me about the safety that he experienced home on Gracely Drive and the safety he experienced in the institution. Can we, can we draw a comparison? 

Denny: [00:23:28] Sure. I mean, well, that's, we'll talk a little bit in generality, but you know, I mentioned before a lot of the staff see deficiency, not gift. The training isn't particularly good. A lot of staff when left to their own devices are capable of some very bad behavior. Don talked about when he lived at Orient, someone held a knife to his throat and he said it was a staff person. I believe him. I mean, but you know, who knows?  He was robbed a lot. He had personal possessions stolen, a lot money.  When he lived at Orient, I didn't witness anything like that, but in institutions a lot of times, people are vulnerable and part of it is even though they live in an institution, they can still be isolated and lonely. They're not really very happy to be there. I used to think this was very ironic, you know, that people don't even have a space or a time when they can be alone. And we used to fund, like in people's plans, there was actually alone time with something that was allocated. They get three hours of alone time a day, which I always thought that was for all good intentions, but you see how weird that is. 

Katie: [00:24:39] It's still in people's plans where this person gets no alone time, right? 

Denny: [00:24:44] No alone time, meaning they have 24 hour, seven day a week supervision. Does that make them safer? If their staff is good, if they have a relationship with their staff. The quality of the service is only as good as the quality of the relationship. And one of the things about community services are that direct care staff are turning over constantly. There's always new people and some of them are not good. Some of them are just there to make 10 bucks an hour or 12 bucks an hour. I mean, they're not paid. They don't have a commitment to the work. And sometimes they're resentful, because of the lack of training, they tend to interact with the people that they're supposed to be respectfully supporting like they're a bad child. 

Katie: [00:25:34] It's lack of training in the good training sense and it's poor training, too much bad training. Right? It's to get to your point that it's deficiency based. There's still a lot of deficiency based training out there. In terms of "This is your behavior plan, and this is the person's case file. And let's go through and not think about anything that is about their passions or interests or strengths."  It's about  "This is how you have to show up for this person to, quote unquote, be safe because they are violent or they are these things"  that get labeled onto a person and then they never leave.

 And to your point about the institution saying  you believe him when he tells you these stories, but no one was there to even witness it. 

Denny: [00:26:17] Exactly. No one is there to know if things aren't going good. Or no one comments. I mean, theoretically there's a quality assurance, even in the state institution, there were supposed to be some kind of quality assurance, but really that didn't exist. It was just kind of what went on behind closed doors.  I don't have to tell you there's all kinds of horrible things that have happened. You know, you think about Willowbrook,  if you've ever seen any footage of that or any of the big state institutions. It's just not a good thing to do, segregate people.  It's bad and congregate them. 

Katie: [00:26:50] And what you're saying is that people are still home in situations where they're not known by neighbors. And the only people they know or who know them are staff, and there still can be things that happen behind closed doors, to your point of  it depends on their quality of the relationship and the training of these direct support workers.

And so while we might have a different iteration of what an institution looks like, we still have these abuses happening in people's homes.

Denny: [00:27:17] I think people who need support come to believe that they deserve no better. This is like  as good as it gets, a staff person that resents their presence. Part of it is too, there's no recourse, like what do you do? Who do you tell? In theory, now you can talk to your SSA and say "This is bad. And I went out of here."

Katie: [00:27:41] Who also turnover on a pretty regular basis. 

Denny: [00:27:43] Right. And who also are hamstrung by lack of options. 

Katie: [00:27:47] And a huge amount of people that they're working for.

Denny: [00:27:50] Exactly,  too many people to know all very intimately. You know, and there's not really many options for, this person's  already placed. So that's one less person to worry about, a lot of times they get discouraged from wanting something better.

I think it's 

Katie: [00:28:06] pretty obvious to the listener but I want 

Denny: [00:28:08] to 

Katie: [00:28:08] make sure we do make the distinction between Harriet and Bill and a direct support worker in a institution. 

Denny: [00:28:16] Yeah. All right. I mean, they're, those are like citizens, free citizens that have want to have a relationship with Don. They  remember him when he was a boy. They have a lot of affection for him. They want things to go better for him. They were sad the way  his life turned out. Staff don't know Don, they don't know that history and they don't typically find out anything about his history. 

Katie: [00:28:45] And then there are staff like you who are more of the Jedi staff. So there are Jedi staff out there and there are people who have been direct support workers with the same people for 30 years.

I just want to acknowledge that and they are caring, loving, presences in people's lives. 

Denny: [00:29:02] There are lots of good people that do this work. It's just that they're not all good. Like anything. 

Katie: [00:29:07] Yeah. So it's like the risk there. There's just a risk. And the greater  the risk is that less people who know that person who aren't necessarily paid or trained to control them or  support them.  They're not paid. They don't have a manager telling them what to do. You're somebody who who's known Don his whole life and you care about him.

And that's not to say things in the community can't be dangerous, but I think really teasing this out, it's about how many eyes are on everyone. So are you one person in a house, an apartment with only staff and no other eyes on you, but staff? Or are you on Gracely Drive, walking down the street in a community of a lot of eyes where people are looking out for each other?

 And that's why it's so important when we talk about community building. It can't just be in community, in isolation. It has to be in community  in a fabric that's woven together of people who know each other and kind of look out for each other. Right?

Denny: [00:30:15] And predictable patterns are good,  like go to the coffee shop every morning at nine o'clock and you kind of get to know people, or go to the library on a regular basis and get to know people that way.

So there's strategies and rhythms that are more conducive to community building that can counter that possibility of isolation. Even with Don, the staff weren't really into putting themselves out. The fact that, frankly, the Butler County SSA director was his pal gave them some purchase to be on their toes a little bit more than they typically would.

Or if his sister and nephew had been around more, it would have been the same. It's like with anything, when people see that you're valued by others, then they tend to treat you with more respect. But if you have no connection, no relationships, nobody that really cares about you then, it's easy to get isolated and alone and be more vulnerable. 

Katie: [00:31:21] Throw away. 

Denny: [00:31:24] Most people with disabilities are poor.  Seventy-five percent are still unemployed. I think maybe  that's improved a little bit, but that was the stat.  So poor people don't have a lot of options. They're more at risk, frankly. So that's part of how it goes.

Katie: [00:31:44] There is a lot of hope right now in that what we're doing at Starfire and with Goodlife Networks is part of that hope. And this is a reminder about why we do it. 

Denny: [00:31:54] It's where we've come from. it's the way that benevolent services were envisioned were, under the best intentions, put people together and keep them with their own kind and protect them. Like I'm sure that doctor, when he told Don's mother to move him into Orient had good intentions for Don, but he didn't know the reality of what life was like there. 

Katie: [00:32:18] And if we don't talk about the realities of what can happen when, then it's going to be another doctor down the road saying something. 

Denny: [00:32:25] Don basically had no choice, no connection,  no real support. He never left the institution. I think, the work we're trying to do now is have people be known.  It's more on community.

And Harriet and Bill, they  don't have a son or daughter with a disability, but they're part of the community. Clearly they know people on their street so, "Come on in, lets..." 

Right. They have a long history of that. They had a long history. 

Katie: [00:32:51] A lot of allies and people that I think are going to make it more rich. So take me back to the day of Don's funeral and tell me what that was like. 

Denny: [00:33:00] Well, it was pretty sad because Don  had only moved into his apartment nine months before. And, as I've said, the many years of living in the institution had taken its toll. I mean, his main form of recreation was cigarette smoking cigarette smoking up his nose. So after about nine months of living in his own apartment, he just stepped out of the shower one day and keeled over,  had a heart attack and died. So it was very sudden. And he was 63 years old when he passed away.  I felt pretty sad and a lot of people did because  he had had such a long journey on his sort of circuitous path on the way back to Gracely Drive. There were a lot of human services people at his funeral. the superintendent that funded his services came.  All his family  came.  A lot of people from the community came, a lot of people from Sayler Park when I didn't know who they were, came, that knew Don or remembered him or knew his family and came to pay respects.

Katie: [00:34:07] What do you think it would have looked like if he was in the institution when he died? 

Denny: [00:34:12] Yeah, I don't know. I mean, you know, there was a whole thing about when I was working, if someone died and they had no one, which was common, there was no one to pay for the funeral and you couldn't use support dollars to pay for a funeral. So we would literally pass the hat. 

Katie: [00:34:33] Wow. 

Denny: [00:34:33] Yeah. I mean, so what does that tell you? It would have been more like that. You know, maybe because he'd  lived in a state institution, the state, I don't know, but... 

Katie: [00:34:42] Who would have been there? 

Denny: [00:34:44] Yeah. Me and a few, you know, staff, some staff would have shown up for sure. I know.  Certainly nobody, from the  community in Sayler Park or unlikely. His sister and I doubt if his nephew would have come. His sister might, cause I mean, it was right on, the funeral home is right on Gracely Drive. That was right in Sayler Park, in the heart of Sayler Park. You know, if he had died in Fairfield, then that would have been totally different.

Yeah. It's hard to say, but it would not have been in a community event of people coming together to remember and pay tribute to a tenacious old coot like Don. Well, that's what he was. 

Katie: [00:35:25] When you first told me that he died only nine months after he moved in, I thought, "What a tragedy,".  I was really heartbroken by that. And then I thought about it and I just realized, you know, it's actually such a triumph that he spent his last days exactly where he wanted to be. And he was home when he passed. 

Denny: [00:35:45] Maybe not exactly, but as close as we could get him, you know? And so, yeah, it was definitely a big improvement.  A lot of people expressed  similar  comments as what you just said that, "Well, he ended up his life where he wanted to be." And that is true. I'm always like, "Well, it wasn't exactly". But, but no, I mean, generally it was a thousand percent better.  And you know, it's hard. There is no ideal. Let's face it. A lot of people never achieve their dream, but,  that was a pretty good effort to do it. 

Katie: [00:36:17] Yeah. Well, thank you so much for sharing the story. I think it's really important. One to remind us about community and how lucky and fortunate so many people are to live on a street with neighbors and to start to recognize that as, "Hey, maybe I should go talk to these people."

Denny: [00:36:35] Yeah. When you bake bread, you make two loaves and give one away, you know? 

Have a block party. Whatever. Drink a beer with your neighbor on occasion. Or a coffee.

Katie: [00:36:44] Look out for each other. Right? 

Denny: [00:36:46] Exactly. Look out for each other. Most importantly.

Katie: [00:36:50] Thank you. 

Denny: [00:36:50] Thank you. 

Katie: [00:36:51] Thanks for your time. 

Thanks so much for listening. If you are interested in learning more about what Starfire does head over to our website. Starfire cincy.org. And maybe while you're there drop us a donation to keep good work in the lives of people with disabilities and families going. .