Unnamed & Unknown | Part 3

From Starfire, this is a podcast on what's more possible in inclusion, community, building and relationships.

Hi. I'm Robbie Jennings Michels with Starfire. This is the third of our series on the Disability Day of Mourning, which is March the 1st, and the fourth consecutive year we are recognizing this day. Disability Day of Mourning is held annually to remember human beings with disabilities who were victims of filicide, people who were killed by their mother or father, and we use this opportunity to remember those killed or mistreated by others responsible for their care at institutions. Institutions and places known as asylums, in our backyard and yours, places where many people with disabilities died, and they died unnamed and unknown.

I'm talking with Tim Vogt, who leads our Learning Network, family mentor Nancy Fuller, and family leaders, Cassandra Clement Melnyk and Nestor Melnyk. Nancy, Cassandra, and Nestor are all parents of people with developmental disabilities and have worked with Starfire to launch family projects within their own communities. Starfire provides family mentors and money to help families like Nancy's and the Melnyks' share their gifts, build community and spark connections. Welcome, and thank you for being here today.

Let’s start with a quick recap of our first 2 sessions:

Tim talked about how he and his wife and coworker, Bridget. heard stories, really sad stories, of the care delivered at places like Orient, which is just south of Columbus, Ohio. Graphic, alarming, choking stories, but truthful ones. Stories that aren't shared for the macabre, but rather for reconciliation because, well, those who can't remember the past are condemned to repeat it.

We talked about the impact of those stories on Tim and Bridget, hearing that someone was locked in the pipe room, that another one's teeth were removed because he was a biter. And as horrible as all this was, it drove a desire in Tim and Bridget for more learning, which they did through relationships and documentaries like Christmas in Purgatory and Willowbrook and Off the Cement Floor, and you can find links to all of those and other resources on our website.

And all of this culminated in a trip to find the cemetery at Orient where hundreds, if not thousands, of people were buried, and they were buried as numbers. And we heard from Nancy and Cassandra and Nestor, who went back to Orient with Tim and Bridget. Cassandra's comment about the fact that human beings were placed at Orient in her lifetime when she was in high school, not 100 years ago, was eye-opening. Nancy found a cemetery in Cincinnati, the former Longview Institute, and she said she and Tim found the grounds sadly familiar. Quiet, cold, no gravestones revealed.

Nestor shared that the tools they brought to remove dirt and brush from those numbered and sometimes unmarked graves, that those tools were breaking. And it was a metaphor that begged the question, are there no solutions to being unnamed and unknown? And that seems like a really good starting point on our journey along the road of reconciliation this afternoon. I want to throw it out to the group. Why is being named and known so important?

Nancy: From my standpoint, being named and known is so important, particularly having a son with a disability, because, as you look back in this history that we've just viewed, we need to honor the people who weren't named and known by doing better because we know better now. And so my efforts and my family's efforts, along with Starfire, is really to give purpose to my son's life, the purpose that many other people weren't granted.

Cassandra: The reason that named and known is so important to me is that everything that I've learned about people and about what people notice and people with disabilities, and I always come back to social capital, whether you have artistic ability or you're doing some kind of job that's interesting, we are known by our work. People with disabilities are often known as the person with the disability. And what I've learned from Starfire is how to create social capital for Troy, how to improve his social capital. In our neighborhood, everything that we have done is so Troy is named and known, and everything that is in our hearts and everything that we tell our neighbors is to make sure that Troy is named and known in this neighborhood that he lives in.

Tim: For me, named and known represents how other people relate to a person. It's not like the people that lived at Orient didn't have names. We know they did. Of course, their gravestone doesn't have their name on it, in some cases, which is what we are focusing in on, but really, they were out of sight. They were sent away to a place that was miles and miles, and possibly farther, from where they were born. They were disconnected from the people that they were kin to and they were lost to their community.

They were essentially what we call out of sight, out of mind. If you're out of sight, out of mind, you don't even get to be thought about. And that's the problem with what the institutions and the systems and even today's social services represent, is we take people out of sight and then they become out of people's minds and out of people's thoughts, and then they're lost to people's hearts. They can't belong to anybody, which is what we're looking for. We're looking for belonging. We're looking for connection.

Robbie: What are some of the barriers to that integration, to that connection?

Nancy: I think some of the barriers are just the way that the institutions, companies, the way it's all set up today. It's set up in a way for segregation even today. For example, lots of kids may not be in an institution today, they're not, but many, many times, they spend their days with other people with disabilities.

The barriers are breaking down the current model that's out there and trying to find a new path forward, one-on-one, out in our community. And that's exactly what our family's been working on, and it's a life changer for us.

Cassandra: I think Nancy really hit on something. It's the individuality. We each have our own personalities, and I think what happens in the disability world is everybody is known as the guy with Angelman syndrome, the gal with Down syndrome. Oh, he must have autism.

Immediately, it comes to mind of, "Everybody I've ever met with autism, that's how this fellow is going to be." And we don't do that with other groups so much, and I really think that it's so important to look at people with disabilities as a person, a human being. What do they like? What don't they like? How can I get to know them? That's exactly what Nancy said.

That's exactly what we've been working towards. That's what we want. That's the bright star in our life is, if people know exactly what makes Troy tick.

Robbie: Rather than having someone known by their diagnosis, have them be, as with Nancy's son, he's an awesome illustrator. The art that he produces is beautiful. Oh, and by the way, he has a disability. And I know that Melnyks' project, your project was the Pop-Up Puppy Park, without a puppy, which is fun in and of itself, but the opportunity to be named and known in your community through that project, again, for something other than a diagnosis.

Nestor: This also reminds me of the labels that we put on people. People automatically get categorized with that label regardless of what their social capital is, status, ability. I think back, I'll never forget when several years ago I met Richard Bernstein, who's a Supreme Court judge in the state of Michigan, who's legally blind. People who say, "Oh, he has a disability," and all of a sudden is lumped in the same category as anyone else with any other kind of disability is unfair to him and unfair to everyone else.

Tim: Yeah, it's really a practical question about imagination. How could anyone imagine how to know them or those people or people with disabilities? It's impossible to even imagine that, because it's a nameless, faceless monolith. And so you really have to get to the individual specific personal named level to say, "Well then, what does Troy want? Or what does Nancy want? Or what does Tim want?" How could I know Tim is different from how I could know Nancy, is different from how I could know Troy, and how we show up in the world is so wildly different.

So the more specific forms of imagination we can help people enter into with each other, the more that we can relate, right? It's just impossible to relate to them. You just can't do it. So I think that that's part of it. I really think that our systems, I appreciate that they're out there.

However, they do have financial pressures, and so we have to serve people in groups. Starfire used to do that. It wasn't until we really realized that we were asking people to give up their identities and their social ability to connect because everybody just saw them as Starfire. Everybody just saw them as “them.”

And that was what we were asking people to give up as a condition of getting our help. And that's when we started to walk away from that compromise that we were asking people to make. And we said, "Look, we just want you to be known for who you are." And that means we have to behave differently as a business, as a company, as an organization. And that's one of the challenges we have for the system.

And that's what we saw in the institutions and Orients and Longview, is they were early versions of our system that just simply said, "These people are all alike. We're going to treat them exactly the same," and the endpoint was none of them got a unique opportunity to offer their gifts to the world and be known. So we're slowly evolving as a system, as any company should, as any business should. And we are saying, "There's a better way to do this." And perhaps we ought to lean into people's connections, their unique identities and their neighbors, which is a different kind of support. It's not based on Medicaid waivers or donations. It's based on, again, connection to people around you.

Cassandra: I think it's important to think about, while we are remembering how things used to be, thinking about how we want things to be. We want everybody to have connection. We want everybody to have friends. We want everybody to think of them and to say, "Hey, I saw this video. It reminded me of something that this fellow might like," and that is what makes my heart sing. When somebody says, "This is funny and it reminded me of Troy," that is what happens in everybody's life except it's so rarely had ever happened in Troy's life that when it does, it's just a miracle to us. And the more that I can make that happen, the better his life's going to be.

Robbie: And the more you can help him be named and known, the more frequent those opportunities will occur and those instances will happen. I really liked what you said, Tim, about it's not one size fits all. It's about understanding what an individual wants and what his or her gifts are, and it's about making opportunities for those gifts to be shared. That kind of leads me to my next question: What are some of the ways that happens? What are some of the ways that those gifts are identified and that we bridge those barriers and bridge those gaps? Nancy, you look like you might have some thoughts on that.

Nancy: Well, I could share from my own personal experience that when I did a family project with Starfire and they guided me all the way through, the first step was to say, "What gifts do I have as a mom and what gifts do my son Steve have?" And we found common ground in both liking to do some art and drawing. And the big question was, "Well, what does my neighborhood for my community need?" And then our case, we started doing art projects around our community, and that was our path forward to make connections not just for me, but for my son to also be named and known. And by the way, I got a little named and known myself, so there was no harm done in me getting new friends. I've got now over a dozen new friends, and so does my son Steve, and it's a blessing.

Tim: Yeah. I think it's another version of being known, which is, I remember Nancy, when we were talking about Steve cared about art, he cared about babies, and he cared about faith, and you did too. And we cooked up the idea that a church would be interested in faith and babies and art, and now you all were celebrating baptisms. And Nestor and Cassandra, I remember sitting with Cassandra we're trying to think of ways that we could help learn how Troy could show up. And one of the ideas was that Troy loved to be moving, and we almost came up with the idea of a cart that if his hands were on a cart and he was pushing a cart, that was a powerful way to be in the world and he could move.

And so you all came up with the snack delivery service that was a cool little thing to try out. But again, those are two aspects of knowing somebody, but you only get to know them that way if you spend a lot of time with them and you notice what really is successful for them and feels good to you. Again, like you said, what your family wants and what your community wants. So who needs snacks out there? Who loves babies out there? Those are great questions and there's lots of answers to them.

Nestor: And this reminded me of our Pop Up Puppy Project (PUP) which it was for Troy, but it wasn't about Troy. But the amazing thing about that is not only did Troy build some relationships and people start to see him in the neighborhood and recognize him and wave and say hello, but then also that next layer that Cassandra and I started seeing people that we hadn't met before and living in the same neighborhood for years and not really knowing these people, but the stories that we continue to hear about other neighbors who have met each other through that process. So it's a compounding thing. It's not just a Troy thing. It's not just our children and our families, but it compounds to other people.

Cassandra: The motion behind PUP, which started as a family project for Cassandra, Nestor, Troy and Sophia, it is just baffling to me. I've just become best friends with the people. I will fight forever to continue PUP, as long as people are still meeting people and one day a month they're not lonely or they have something to look forward to. I just think that is the best thing that our family can offer to our neighbors.

Robbie: That's awesome. And with every one of those stories, the likelihood that your children, your adult children, your loved ones and others will not live a life of out of sight, out of mind. They won't, because of the work that you've done to create projects, to take those eight seconds of outrageous courage to let others into your life, as Nancy would say. And I think that's one of the reasons why this recognition of Disability Day of Mourning is so important. It's not just about going to the cemetery. It's about remembering and it's about understanding that this happened, and some instances continues today. And the only way that it doesn't continue is if we recognize patterns and we remember, and that's why we're going. What is the trip to Orient and to Longview, which is now Summit, what is it not about?

Tim: So what comes to my mind, Robbie, is it's not a community service project. It's not a resume builder. It's not something that you can sit in the car on the way home and say, "Wow, that was great. I feel good about this," and then forget about it. It's about acknowledging, it's about self-reflection, and really, it's a call to action. It's a call to change. It's not about the day. It's not about cleaning graves. It's not about standing there and thinking about what happened. It's about moving forward.

Robbie: Very well said. Nancy?

Nancy: I was just going to add that I think there's a healing that needs to take place. And when you look backwards to acknowledge the pain and what was ugly, we want to pivot from that unnamed unknown place to looking forward toward what can we do in our own world, in our own sphere of influence to help people become named and known. And so to me, it's a journey from one to the other and showing up on this day is the first step to say, "Let's look at this truth together, and then let's self reflect on what are my gifts and how can I make this world better so this does not repeat?"

I realized recently that our family project, the Anderson Art Collaborative, which has now become its own nonprofit and its growing and swelling, what I've realized now, that is my reconciliation. Because my dream is to create a space in my community where all are welcome, all are named, and all are known. And that is my work. But what is my work going forward? And it's to create the culture in my community that matters.

Robbie: Okay, so March the first 10:00 AM we're going to, for the first time, visit two cemeteries. One here in Cincinnati where Starfire is headquartered, although we serve and connect with people all around the world, thank you to Zoom. We will also be for the fourth year in a row at Orient. So Nancy, start us off. What are we going to do at Longview?

Nancy: So we'll start with reading and recounting a little bit about the history of Longview State Institution as well as how people arrived at this cemetery. Following that, we have some storytelling to do, and I personally have met four people who knew people at Longview. And I think it's important as we look at the truth, to look at what their experience was on who they met there and what their experience was. And then my son Steve makes bookmarks with prayers on them, and we'll begin to read many of the names of the people that we know were buried in this cemetery. And so I think hearing the names will bring it home and make it real. But then we're going to try to pivot just like we talked about to something more beautiful.

So we'll lay flowers in some vases around the one monument that remains there, and we'll talk as a group about what are some options to continue this healing and restoration. And lastly, we're connecting with new people joining together and that's what this is all about. So we're meeting in this space like-minded people with big hearts, and these relationships may continue in a positive. One day, could you imagine if there were many, many people commemorating this day of mourning across our country with the same intention to look, reveal and move forward? And wouldn't that be a beautiful thing if people around our country could recognize that day and ultimately create a personal challenge to do better?

Robbie: I can't wait. Thank you. Tim, what will happen up in Orient?

Tim: It'll be very similar to what Nancy described. We'll gather at 10 o'clock on March 1st we'll circle up and talk about the history of what the day is and the history of the place, and then we'll let people walk around and look at the graves, and we'll bring some flowers as well. And Nancy's going to mail me some of Steve's prayer cards. Then we'll circle back up and talk about ways that we can commit ourselves to something better in the future. The one aspect that's a little different for Orient is that we want to figure out if there's somebody who's close to orient that would be interested in carrying this forward in future years. We really believe that local solutions are the best solutions to inclusion. So we're inviting some people that are up from Columbus area and central Ohio to join us, and I'm there to connect them to what we've been doing for three years. And my hope is that they would be interested in carrying that forward for that area of Ohio.

Robbie: Yeah, very good. I agree with you, and I think many people do, that local is best from an awareness perspective, and that helps the ground swell and it helps connect people here and in other communities. So I am so glad to hear that. The torch is heavy, but it's not impossibly so.

Nestor: Last time we talked about not having the tools. Sometimes we lose sight of the solution because we're thinking of the big picture. We're looking for that big solution, but sometimes it's just about little steps and small projects. And to echo Tim's suggestion that the visits to Orient should be local, it's that same thing. It's all about people doing what they can do with the resources they have, where they are and who they have that they can affect.

Robbie: We will be at Orient and at Longview at 10:00 AM on March 1. The first directions to both facilities are on our website starfirecouncil.org. Go to our calendar page, look for March the first. There are images and resources and stories, and I invite you to go to that page as well as listen to these three episodes. Thank you all so much.