Unnamed and Unknown | Part 4

On March 1, Starfire marked Disability Day of Mourning to remember those with disabilities who died at the hands of parents and caregivers.

We returned, for the fourth year, to Orient, Ohio on the grounds of the former Orient Institute for the Feeble Minded; we also visited the cemetery of the former Longview Asylum in Cincinnati.

We remember this day because, offers George Santayana, “those who cannot remember the past are condemned to repeat it."

These are the voices of the team that traveled to Orient.

Trigger warning: Their comments are honest, raw, and can be alarming:

Tim Vogt: Behind me is the cemetery. So, if you look, you'll see, before that tree line there, and beyond that tree line, you'll notice divots in the ground; if you want to pay attention in those divots, you can move some of the grass away and some of the leaves away and you'll see stones with numbers on them. So, just to give you a lay of the land: We started this just as a way of remembering the day itself as the Disability Day of Mourning. It was started by the Autistic Self-Advocacy Network, and they wanted to mark people with disabilities and commemorate them who died at the hands of their parents. What's known as filicide. Bridget and I in particular know a few people who have died at the hands of their parents, and their parents died at their own hands afterward. So, we felt like honoring that was perfectly fine. But we also wanted to expand it ourselves, and just think about people that died at the hands of caregivers.

We felt like looking back at ourselves as a service providers, looking back at ourselves as a society, as a culture, was an appropriate and powerful way to approach how to do something different, how to build a different kind of future. We particularly know a few people that used to come to Starfire's programs that had disabilities. One man spent his whole life here. One woman was dropped off here at the age of six, and she talked about how horrible it was to just sit in a room all day. A man who didn't really know who his parents were, said his teeth were yanked out because he would bite himself. So, the things that happened here at Orient Institution are things that we just want to remember. So, we started visiting and what we noticed was well over 1,000 graves that have no names. For us it's not necessarily about beautifying a cemetery. If we got a bazillion dollars and tried to figure out how to make everybody have a headstone with their entire history known, that would be one way to go about it.

But our concern is that we could shake the dust off our hands and say, "Well, we're done here," and go back to business as usual. We think that this cemetery, and others like it, represent a metaphor for how human beings with disabilities still struggle to be known, still struggle to be known as individual people with individual stories and capacities and possibilities. Keep in mind that the story's not done. That it's about noticing this and then saying, what do we do out of this? So, if somebody wants to spread flower petals, you can do that. We have a few tiny garden spades, if you feel like you want to get your hands dirty and clean up some stones. There are a few cards that our friend and colleague, Nancy and her son, Steve, they wrote a prayer about being named and known. So, lots of people, lots of options of ways that you can spend your time, wander and look at the graves, feel it. All right. Does anybody have any questions? Cool. All right.

Kenny Whiteley: I'm Kenny Whiteley. I'm from Lancaster, Ohio. I work for the Perry County Board of Developmental Disabilities, and I work a lot with training people with disabilities, training people that serve disabilities. So, I'm part of the system. I need to know what the past is to know where we're going, going forward. I'm a very empathetic person, so it's really hard for me to know what limited options that people today have, and what even less options these people had.

Being here today, I was talking over there, I don't want buried in the ground myself. But I had a choice, in that these people died over here and somebody brought them out here and made this choice for them, but we couldn't even acknowledge that with a name. They say that you die twice. They say you die when you die, and they say you die the last time that someone mentions your name. So, I don't know. I'm very affected by today, and I think I'm taking a lot of this away with me, but in a good way. I've got to find a way to put this energy to use.

Pam Whiteley: Pam Whiteley is my name. This is a great reminder as to why we do what we do. There's just a lot of frustration. But coming and doing things like this, it just, I think, keeps it real and keeps it fresh as to why we do what we do every time.

This is my second year coming, and the first was so jarring and shocking. So, this year we're doing two different locations with the hope of not only remembering individuals, but also trying to have that look back on why things were done the way they were, and how we can prevent similar actions, and respect the individual. All right. So, this is Howard Reed. He was born on May 6th, 1914, and he died on December 17th, 1969. Who was Howard? He was a brother. He was a son ... and why was he here? Why was he put here and was he respected? What could he have given [to] more people? We're, in the most respectful manner, unearthing headstones, not digging them up, but digging the dirt off of them, exposing the name, exposing the life that was here. That's the goal here. That's my goal.

[Attendees begin to read aloud inscriptions from the graves…]

Kenny Whiteley: George Dudley, January 15th, 1910, March 6th, 1973. May Lewis, January 14th, 1918, March 11th, 1973.

Mitch Haralson: Oshi Williams, July 14th, 1923, to November 18th, 1969. So, at the tree line, it changes from names and dates to numbers. So, I'm interested to know why. But it's just a stark difference in, I think, respect, quality of stone, deliberate nature of the layout. It's just the stark reality of, here's where we stopped caring.

Pam Whiteley: Unnamed, 381.

Simon Buehrer: Unnamed, number 474.

Pam Whiteley: Unnamed 353.

Simon Buehrer: This one's unnamed. 445. I'm going to scrape it. It's like a scratch and reveal. It's [just] how long it's been here. 399, again unnamed. I'm Simon Buehrer, and I work for OCALI in Columbus, and I'm here on the Disability Day of Mourning to learn how to become a better human being. OCALI stands for the Ohio Center for Autism and Low Incidents. So, our goal is to help build opportunities for folks to experience a high quality of life throughout their life. I'm muddy and I'm glad, because it feels like this is work in the earth, which I think gives it more of a weight.

I came here to learn how to be a better human being, and to try to bring a sense of responsibility and reverence. I mean, I feel it deeply. You can feel the physical sensation of being here with the wind, and reflecting on the fact that this was a human being with nothing more than a number to mark their passage on this planet. Yeah. What do I feel like? I guess I feel honored to be a witness to this, but also just the weight of this experience. Like I said, I came here to learn how to be a better human being, and I think part of it is a responsibility that we all have to being a part of a community. What that means is making sure that everyone has opportunity, everyone has the ability to be fully present in their own life.

Bridget Vogt: This is a clear task. We can all feel good about. Like, well, I know I did that, versus when we look out beyond this space and this time and the history, it is a little less clear what to do to make the world better for people with disabilities. So, I think that's somewhat of the draw of the action, and the clear cut. We all like clear plans, and the rest of the world is just not as clear when we leave this space. But I guess the hope is just stay motivated by this, so that this doesn't happen again, or it doesn't happen in a way that it happens now. It looks a little different, comes in different packages, but it's still happening.

Katie Robinson: I am Katie Robinson. I work at OCALI and the Accessible Educational Material Center. I'm here today as a disabled person to honor my own community, and a bit of my own history, and hopefully highlight some of the history of ours that is essentially hidden, and bring it out and make people look at it because it's the only way we can do better going forward. It's a piece of history that we're just not so far removed from.

I was born in 1990, and my parents were told to institutionalize me by an ophthalmologist. To know that these are my people and that they suffered in such a way, and they've been so dehumanized to be a number, is difficult. We're not there yet in terms of being equal, but I've been able to do things that the person here probably couldn't have dreamed of. I'm proud of the disabled advocates of yesteryear, who gave me those chances. That includes, I feel connection to these people. These people are part of my history and part of that push for change.

Unfortunately, many of them gave their lives for it. It feels good that there are able-bodied people who are listening too, it's not just disabled people trying to get others to listen, that this is our history that's not taught in schools. This is our history that nobody talks about, or those people. It's a “those people” problem, when disability is not a problem, it's part of a person and who they are, and it's okay. The atrocities committed to people when we can “other “them, we have things like this happen. If we can step away from that othering of people, humanize people better, we can be more removed and not do things like this again. In my lifetime, we still have had that mindset of, those people go away, those people go to other places and they're not part of society. I was very underserved in a public school until I was in sixth grade, and I did have to go away. I went to the state school for the blind, because my public schools didn't serve me properly.

While that's not institutionalization, I should have been able to be better served in my community and I wasn't. I would say the biggest difficulty of being a multiply-disabled adult now isn't really as much access issues, like being able to get on a bus. It is society’s views on disability that stems from the mindset of this institutionalization, the medical model of disability that perpetuates, that there's something wrong with me that needs fixed. When disability can be a piece of human diversity, and I have a perspective to offer that others may not have, and it's not something that should be erased from me. But the preconceived perceptions of disability and the lack of resources that should be available to disabled people to be independent, is really my struggle day-to-day, like accessible housing, I can't afford an accessible house and I'm going to be fully paralyzed at some point in my adult life.

The preconceived notions that people have when you walk into a job interview. My disability is very visible. I've been perceived as inadequate or not as qualified as soon as they see that my eyes don't track together. The public perception that you can't live a good disabled life. I've had my own blood, my own family tell me that if they were me they would've killed themselves. That's not a testament to my strength. You just do what you do. But when people say things like that, they seem to think it's a testament to saying how strong and great you are. But it really says that, I can't perceive living a good disabled life. That if I was you, I couldn't live a good life.

I used to have no confidence, because if people tell you that you're nothing for so long, you believe it. Some of my confidence can be faked, but some of it is genuine. I have to present a front of having it together and competency, a little more than somebody able-bodied may have to do, because I know I'm representing my whole community, including these people here and those living and those who right now don't have a voice or a way to communicate with you, to talk to you. I represent myself and I represent them. If you're passive and you're disabled, you're screwed. That's really what it comes down to.

Best action, honestly, talk to more disabled advocates. Consume media created by disabled people, including their own memoirs, their own books. Listening to disability advocates who they themselves experience the life. You can be parallel to a disabled person and be empathetic, but it's best to hear about the experience from the person living it.

There's going to be uncomfortable conversations. I've had uncomfortable conversations with people. People may not want to confront internalized ableism. From birth, our community, our world, is taught that disability is bad, disability is life ending. There can be some uncomfortable conversations about unintentional ableism, or admitting that your mindset may need to shift on your perceptions, or that maybe you've said something wrong and that's okay. It's part of the human experience, is we should be learning and constantly changing and growing as people daily. We're not meant to be static, we're meant to be dynamic. So, to be open and to be willing to listen, and be able to work together. Working together, we can remember this part of history and we can unpack the mindset that continues in people that justifies things like this.

Tim Vogt: Thanks for your time today. We always close with a little reflecting, and as the spirit moves, and then we'll have a few words after that. So let's just start with what's on your heart, what's on your mind, what you're thinking about, what it meant to you.

Katie Robinson: I came out as a disabled person to pay homage to my own community and our history. It was moving. I mean, it's moving to see able-bodied allies that care too about this history, and want to preserve it. But it's moving to see a number assigned to a life, and nothing more. When they had a whole history of likes and dislikes and things to offer the world. They were a light, they were a light in the world that was reduced to a number.

Pam Whiteley: Katie said a couple of times over the last hour that it seems like this is almost ancient history, thinking about 1800's, really early 1900's, but it happened decades ago. It happened a decade ago. It's still happening now. These are just reminders that we need to not take steps back.

Tim Vogt: Two things are striking me today. One is, I have a friend who passed away last year that worked to bring people out of Orient down to Cincinnati, and find places to live. Every time I'd talk about this place and our visits here, he would call me up and he'd say, "Remember, Tim. Good people worked there." So, it's making me think about good people and what that means. I don't really have an answer for it, but good people buried these people without a name apparently. Good people ran this place and performed some pretty horrific acts on people. I'm trying to reconcile what that means for good people who say they're good people today.

The second thing that's touching me is the land is scarred to a certain degree. You can see the divots, and as we dig around the stones are being swallowed up. But we're doing healing work for our ancestors, as y'all pointed out. Another one, one more, another one, one more, which is the work of the future.

Take care of yourselves. There's lots of ways to do that. If you want to talk to somebody, grab them before you leave and just say, "Can I get your number, your email?" You can talk, hold each other, human touch, human connection is the antidote to human disconnection, which is what we think this cemetery represents. It's going to hurt, I think finding ways to make it better will help you. Commit yourself to good work, as most of you are, and that's worth it.

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