Unnamed & Unknown | In Our Backyard: Understanding DDM Part 2

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

Robbie: Welcome to Starfire's podcast, More. We call it More because the work that is done alongside people with developmental disabilities helps everyone realize more, more connections, more friends, more happiness, a more fulfilling life. I'm Robbie Jennings Michels with Starfire, and we're talking with Tim Vogt, who leads our learning network; family mentor, Nancy Fuller, and family leaders, Cassandra Clement Melnyk, and her husband, Nestor Melnyk.

Nancy, Cassandra and Nestor have been involved with Starfire for several years and are parents of adults with developmental disabilities.

This is the second of three sessions we're dedicating to Disability Day of Mourning, which is held annually on March 1st to commemorate the lives of those with disabilities killed at the hands of caregivers, parents, institutions. In session one, which is now posted on our site at starfirecouncil.org, and available via Apple, Spotify, and Stitcher.

We talked with Tim Vogt, who led Starfire's pivot from day programming and then, later, teaching community-building in a building, to our present state, which is teaching community-building in the community.

Tim shared how he came to understand the truth and prevalence and instances of some pretty horrific treatment. And the content you're about to hear describes treatment of people that can be alarming and graphic. But if we don't learn the truth, we can't reconcile the past or heal. Tim talked about how this realization led him and others on a journey of reconciliation. We talked a lot about resources last time, and links to all of them can be found in the transcript section of each podcast and at starfirecouncil.org/event.

Look for March 1st, which is when our group will travel to the former Longview State Hospital Cemetery and to the Orient Cemetery in Pickaway County outside of Columbus.

Tim, you and your wife Bridget, who's worked at Starfire for as long as you have, you take a day to drive to Orient Cemetery. You don’t know that it's Disability Day and you're not doing it as part of a theme. You just want to see and learn more about the place that was an asylum. You and Bridget dig, you find numbered gravestones, and you have a short, but telling exchange with a prison guard. Describe that for us.

Tim: When we got up there and knew we were on prison grounds – the cemetery is in between the two campuses of the prison – we were a little worried that we might be making the prison guards nervous. We weren't really sure what the protocol was for visiting a cemetery. After we were visiting, we kept waiting for somebody to show up, and after we visited, we walked toward our cars.

And as we walked back across the graveyard, we saw a little security guard zooming up to us on a golf cart and we thought, "Boy, this is it. This is where we get ourselves in some real trouble."

He came over and he said, "What are y'all doing here?" and we said, "We're just visiting this cemetery." And we told him we were from Starfire and we said, "We're really just kind of thinking about how to process this graveyard," and we said, "In particular, we're interested in, and saddened by, the part of the graveyard that has people who are buried here that were people with disabilities, and they died here and they're buried without even a name." And I said, "Some of these headstone are just numbers."

And that prison guard got really quiet and then he said something that was really profound to us, which was, "It's still that way."

He said, "The people inside are still just numbers."

We had a good conversation about that common way that we have of sending people away, turning them into numbers, erasing their name, essentially, and just kind of treating them as people separate from us, and we were impressed. Bridget and I were both impressed and moved and touched by the compassion of this prison guard, not only to what we were trying to do, but also to his own role and his own understanding of the prison itself. So it was a really powerful moment for us.

As we were walking away, he said, "Well, I'd like to just invite you to maybe go through the processes next time." And so he did give us the name of the assistant warden, and he said, "If you just call her up and tell her the next time you want to come, it shouldn't be a problem," and gave us her direct line. He was really helpful in making it possible for us to visit, and we were really grateful for having met him.

Robbie: I'm glad to hear that. And how random was that, the fact that you and Bridget were there and you really didn't know that it was a national day to remember. And talk about the providence of that.

Tim: As we were driving back, I remember we were stuck in traffic, and I got an email notification from the Autistic Self Advocacy Network and it said something about marking the Disability Day of Mourning. I couldn't believe it. I pulled my phone out and read the email and it talked about, "Join us in commemorating and marking this day as a day to mourn the lives of human beings with disabilities who lost their lives at the hands of their caregivers."

I always believe the universe moves in mysterious ways, and Bridget and I just couldn't believe that we had actually been there mourning human beings with disabilities who lost their lives and lost their identities, while under the care of the people at Orient, on the actual day that the Autistic Self Advocacy Network and others had already set aside to mark. We didn't even know about that.

Robbie: Yeah, that was definitely kismet. Nancy, remind us how you got involved. You talked a little bit about that during our first podcast, but where did you you start your research?

Nancy: I think where it all started was Tim and I used to do coffee regularly, and one coffee conversation, after he and Bridget had gone to the Orient, he couldn't help but share his experience with me, and I was deeply moved and upset by what he shared and I said, "We need to do something. We need to do this again." He agreed, and he said, "But if we're going to do it again and potentially invite more people to join us, we're going to need to get approval." I offered to call up the prison and try to get approval. I did track down the assistant to the warden and she was very gracious. Once we did connect, she approved us bringing a group of people the following March.

Robbie: And, Cassandra, that was your first visit with Troy and Sophie…

Cassandra: I knew that friends from Starfire were going to Orient on the Disability Day of Mourning. I had heard of Orient and I knew it was the largest asylum for people with disabilities in Ohio. I just quickly Googled to see what I could find out about it, and I found out how it was opened in 1857. The name was the Ohio Asylum for the Education of Idiotic and the Imbecile Youth and, today, those words just sound so hurtful.

And then I saw it was changed. The name was changed, later, to the Institution for Feeble-Minded Youth, which, again, just stabs you in the heart. And then somebody changes it to the Columbus State School, and then it ended up being called the Columbus Developmental Center in 1980, and I saw that it closed in 1984, and that was the year I graduated from high school. And it really struck me so hard that, when I graduated from high school, people like my son were living in a place like this.

My daughter and I decided that we were going to take Troy [son/brother with a developmental disability] on a road trip. It's about an hour and a half away. It's north, so we knew it was going to be colder. You hop in the car, and an hour and a half is not a long ways, but it gives you a long time to talk. Sophia was very interested in like, "We're going to prison ground. Are we going to get in trouble?" There were just a lot of questions about that.

We pulled in, and you can just drive right in, and there was a parking lot there and we met with the other people from Starfire. We got Troy out of the car and he started walking in the cold, cold, windy weather. And Sophia and I were on either side of him, and I remember the group was a little bit further ahead of us because the ground was so choppy and it was also very wet. And then, as we're going up a hill, Tim says, "This, this right here, what we're walking on, these are the gravesites."

I think I knew that there were only going to be numbers, but I think I expected to see more of a cemetery with headstones, and there weren't any headstones at all. We were walking, the bumpy terrain that we were walking on, the divots, the indentations where the markers were, people had died, and the gravesites were just rectangular stones. And you had to take your boot and shove the moist, muddy earth away, and then you could see a number. And Nancy was so brilliant to bring flowers, and she handed flowers to all of us, stems and bouquets of flowers, and Sophia and I thought, we're going to put a flower on everybody's grave. Come to realize, there are hundreds and hundreds and hundreds. It ended up not being a flower, it was a petal. It was a sprinkle of petals because there were so many stones with numbers.

We left and walked back to our car. And, on the way home, I remember so many of our sentences started with, "Oh my gosh, can you believe?" and, "Wow, that was so sad." And then we were so quiet for a while and then, all of a sudden, the end of the ride ended up so much better because it really solidified for us that we had to make sure that Troy, who was sitting so quiet in the backseat now, that Troy was going to be seen. And we knew that he wasn't going to have a life like that, but do people know him? What do they know about him? And we realized, my son, her brother with developmental disabilities, hadn't had any social capital at all to offer to our neighbors and friends. I really see that as the beginning of our journey.

Robbie: Developing and sharing and treasuring that social capital, that's a really excellent point about one of the reasons that we do the work that we do at Starfire and why we commemorate this day. Nestor, I know that, on your first visit, you said that you felt a little overwhelmed. What made you want to go?

Nestor: When Cassandra, Sophia, and Troy went the second year of this journey, and they came back and shared what they saw, what everything was like, I felt compelled to do something just to acknowledge what had happened in my own mind and experience it for myself. It's one thing to read and hear about it, but it's totally different to personally experience that, just hearing about the hundreds and hundreds of numbers there is one thing, but to see it for yourself. And I think what was most powerful to me, at the time, was just the anger and frustration that I felt that these gravesites are still neglected. These people were neglected in life, and they're continuing to be neglected even after they're gone.

Robbie: Nancy, you often talk about having eight seconds of outrageous courage when it comes to building connections and growing in times of discomfort. And I'm sure, when you picked up the phone and asked if you could bring digging implements to a prison ground, that took a lot of courage.

Nancy: Yes, Robbie. After our second annual trip there, we immediately felt, all of us, compelled to do this again. As we talk about how are we going to continue this theme of truth and reconciliation, we're thinking, "Okay, we dropped pedals on the graves," which was very healing and restorative in a way, and we said, "Well, if we're going to do this again, what's next? How can we enhance this?"

It didn't take long to think we were digging with our heels to try to uncover a number. It became very evident, Robbie, to your point, that we needed garden tools of some kind. And I think it was Tim that was like, "Do you think a prison is going to authorize you to bring in things that could be a weapon right next to the gate?" I called our new friend, who was the assistant to the warden, and I told her what a great experience we had and that we'd like to do it again. She said she had to get permission about the tools, and then, that next year, we got to take the tools with us and enhance our experience. And all I would say about that is that I felt more connected with the whole experience by getting my own hands in the actual dirt and turn over that grass to reveal that hidden number. I felt even more connected.

Robbie: Cassandra, did you have that same feeling as you were uncovering, that you had that dirt in your hands and you're thinking, "Wow?"

Cassandra: Yes. I think we've all heard of the saying, you have to dig in and get your hands dirty. And there's definitely a difference than using a boot heel and kicking and scraping with a boot heel than getting down on your knees in the damp earth. What it reveals is 967 or 529, but we knew very well what those numbers stood for.

Nestor: When the three of us went this past year, we realized, as we're driving up, that we actually forgot to bring some implements with us. And we, on the route, stopped at a Family Dollar dollar store, one of these discount stores, and bought some cheap spades because that's all they had.

And, as we're working with them, the handles are bending and the blades are bending because they're not the quality implements that we thought, and that actually was frustrating to me because I felt I wanted to do more and I couldn't, and I felt that even these simple tools were not enough. But it also is what made me realize that this whole issue is more overwhelming than you can imagine. The tools don't exist to truly reconcile this.

Tim: I'm struck by what you said, Nestor, that the tools don't exist. And I feel that frustration because I remember, when we left that day, you were ready to, for lack of a better word, go to war. You were ready to write letters. We were ready to go to the top of every single relationship we had through state government trying to figure out what could we do, right, and somehow people have to be aware, right? And I thought that that was about the best tool I could imagine is bringing in other people's awareness, highlighting the way that this cemetery represents a metaphor for neglect and absence of a community.

And I just want to say that, to tie it back to episode one, one of the people that lived at Orient that I knew, that told me about what it was like to live at Orient, a few years after I started working at Starfire, he passed away. I went to his funeral and I remember being one of about six people at his funeral. The only other people there were a few people with disabilities from his group home and a staff. And the officiant asked if anybody had any words to speak to his life, and no one spoke up. I didn't speak up either. I knew him, but I didn't feel like it was my place.

Now, looking back on it, it's hard for me to believe that I could have been the person to speak up and it's hard for me to believe that I didn't. But that experience, knowing that he went to his grave without people speaking to his life, and that's the part that I feel the same frustration and anger that you feel, Nestor. We still don't have the tools to help people see and be seen. That's everyday fire in the belly for me. We have got to help people be what we call named and known, and that's Starfire's work. That's your all's work as families…

Robbie: … and what is everyone's responsibility, right, is to know the history, to recognize the patterns that, sadly, are still happening, and to be inclusive. And that leads us to this year. This is the first year that we'll tackle two visits on this day. I invite you all to listen to our third podcast, which will air on February 20th. I invite you to look at our website, starfirecouncil.org/event. Come with us, travel to Orient in Pickaway County or come to the grounds of the former Longview State Hospital here in Cincinnati. And, when we talk again, we'll talk about the process of permission and what we'll do on our fourth observance of this day. Thank you all for listening.

For event details, visit our calendar page.