:00 [Narrator] Welcome to the Treat People Like People podcast. Our guest today is Robert Stack, author of the book, Silent No Longer and the president and CEO of the non-profit Community Options. Here’s Robert:

:14 [Robert Stack] Community Options is a nonprofit organization that I founded in my 30s. So, it’s been around for over 30 years. Our mission is to develop housing and employment for people with disabilities.

:26 [Robert Stack] It bothers me even to this very moment that I’m speaking to you, that there’s still thousands of people that are relegated to live in these kinds of facilities. The people didn’t do anything wrong, and the people didn’t hurt anybody. They didn’t do anything against society. And yet they’re relegated to live in these warehouses. They’re relegated to live in nursing homes. They’re relegated to live in orphanages.

:47 [Narrator] To understand what drives that kind of passion and urgency, we have to go back. Way back. To a seminary outside Pittsburgh, Wednesday afternoons, and a little girl named Tanya.

1:00 [Narrator] Robert grew up wanting to be a priest. He was enrolled at St. Fidelis Seminary in Pennsylvania. Six days a week of Latin, French, math, and English. The only escape: Wednesday and Saturday afternoons. You could play sports, which Robert was terrible at, or you could volunteer. Robert chose the latter.

1:21 [Robert Stack] They had us go to this building, which wasn’t far away. They bused us there. And it was an orphanage sort of a thing, or an institution. And it was for children with significant levels of disabilities.

1:32 [Robert Stack] And I met this little girl named Tanya. she was born without a disability from what I understand. Her father was psychotic and he tried to smother her to death. The result was significant levels of brain disabilities and a lot of other sorts of ramifications. You know, she would drool all over her arms and she would have problems. I worked with her every Wednesday and every Saturday, we would go to the mall, we would hang out together, we would play. And I got her to chew, and I got her to do a variety of little things. I was only at the time 13, 14, 15 years old. We had a very nice relationship, and I really liked seeing her. And I liked taking her to the mall and she’d hold my hand and it was like I was her big brother type of thing

2:15 [Narrator] In his junior year, however, Robert realized that priesthood wasn’t for him after all. He left the seminary, finished high school, went to college, and eventually landed in a graduate philosophy program at Kent State. His plan was to get his PhD and head to Colorado. Then came a reunion.

2:35 [Robert Stack] And I went back to the seminary to see my friends. And I decided I was going to go up and see Tanya in this building. And it was totally shut down and out of business. I later learned they moved her and other individuals into large congregate care, institutional warehouses. She ended up in a place called Pennhurst, which was a horrific institution in the Philadelphia area.

2:57 [Robert Stack] I wanted to see what this Pennhurst was. And when I saw Pennhurst, I’m like, this is a horrible place. I said, why do the people live here? And I wanted to see if I could figure out how to get her out. And I was no family member. I was no relative. I had absolutely no blood ties at all. But I was very frustrated because I couldn’t do anything about it.

3:14 [Robert Stack] And that’s when it really kind of dawned on me that, that it really wasn’t important if people understood the allegory of the cave by Plato or whether or not, you know, Sartre’s existentialism was going to have a long-term effect on anyone. And I decided to put the magic marker down, if you will, and, and devote my life to disabilities.

3:35 [Robert Stack] I was able to get a job at an institution called Suffolk Developmental Center.

3:41 [Narrator] It came with a 50% pay cut and a title nobody had a real definition for: Assistant Recreational Therapist. And what he found there only affirmed what he’d seen at Pennhurst.

3:55 [Robert Stack] I worked on the ward, and I did things and I got involved with all the people with disabilities in this institution. And that’s when I saw how really bad it was.

4:03 [Robert Stack] My roommate and I when we would run in the morning, we would see like a bunch of people, like just milling about in a big day room. And we would see a few staff staring up at a, at a television that was suspended from the ceiling with wire hanging. And then that night, whenever I would come home, I would drive by that same building and I would see the same people, you know, leaning there. And they were staring at the television as well. I was just absolutely astounded at how horrific it was and how no one should really live there like that.

4:37 [Narrator] In the coming years, Robert would work in different roles for several institutions and in government organizations. And the more he worked with people with disabilities who were shut off from society and any human dignity, a plan started to form in his head.

4:54 [Narrator] The plan was to move people out of institutions and into the community. Into their own homes. Into jobs. And, most importantly, into life.

5:06 [Narrator] Robert eventually founded Community Options. And somewhere along the way, he started writing about what he’d witnessed. Because he kept running into the same wall: people couldn’t see what he saw.

5:20 [Robert Stack] People with disabilities bring a gift. When they come to work, they come to work with dignity and grace. I meet so many people with disabilities who are just really terrific people and they enrich my life and they can enrich everyone else’s. But if they’re tucked away, if they’re segregated to live in large institutions, no one’s ever going to find out who they are.

5:39 [Narrator] There’s this misconception that people with disabilities somehow can’t or won’t contribute to society. That they’re ok with not being a part of it. In his book, Silent No Longer, Robert shares the stories of the people he’s worked with. To show the world that they are willing and able to contribute to society.

5:57[Narrator] One of those stories is that of Bernard. Robert found him at the John Stone Training and Research Center in Bordentown, New Jersey, an institution he was working to close.

6:09  [Robert Stack] One of the people I talk about my book, Bernard. So here I am at the John Stone Training and Research Center.

6:17 [Robert Stack] I walk into a ward and there’s a guy. And the guy is sitting there smiling and he’s at a table. And he has a, a, a bunch of magic markers. And I go, hi, how are you doing? And he goes, “Good, my name’s Bernard.” What’s your name? And I go, Robert. And he goes, okay, Bob, good to meet you. So I go, oh, good to meet you. And I go, what are you doing, Bernard? He goes, well, I’m taking these magic markers and I’m putting them in the box. I go, then what do you do? He goes, well, I fill up this box and I put the little box in a bigger box. And I go, what do you do then? He goes, after I fill up these little boxes, I fill up the big box. And then I fill up that big box and put it in a bigger box. And I said, and then what do you do? He says and then I dump them out and do it all over again. Ridiculous, isn’t it? And he realized without articulating the fact that what he did had absolutely no purpose. Absolutely no reason.

7:02  [Robert Stack] So I said, well, would you be interested in living in a house in a community? And he said, of course.

7:09 [Narrator] Robert got Bernard out. He got 17 people out, actually. The ones no other agency would take. Blind, deaf, multiple disabilities. He got them all.

7:24  [Robert Stack] I got Bernard out of the institution. He was very, very bright and very interested. He worked as a volunteer for the Stony Brook Watershed Treatment Center. And he liked it. He could answer the phone and he showed that he had, you know, a really great repertoire. He had this unbelievable verbal retention.

7:41  [Robert Stack] I found a condo. The banks didn’t want to give us the mortgage because they were afraid that if we defaulted, they wouldn’t be able to throw a blind guy with intellectual disabilities out on the street. But after a lot of harraging, wheeling and dealing, we were able to get him in. We got him a job and he was a receptionist and he was, he’s been a receptionist. I think he’s retiring now, but he’d lived there for years and years. And he was living in this apartment. He, he would take a bus on his own to the, to the, to the building that he worked in. He would work there and we give him very minimal support.

8:17  [Robert Stack] I saw how easy it was to do if you did it right. I’m watching people that didn’t have anything to do relegated to live in these facilities. And now they have a purpose, all of us should have a purpose.

8:29 [Narrator] And then came a reporter to do a story on Bernard…

8:34 [Robert Stack] This woman stuck a microphone in his face. And she said, why did your parents put you in an institution? And he said, because the doctors told them that was what was best for me. And then they said, what did you hate about the institution the most? And he thought about it for a few minutes and he said, they told you when to go to bed. They told you when to get up. But the most I hated was that you had to take ice cold showers and with a lot of other people, which I think is a pretty telling story.

9:05 [Narrator] Choice. Dignity. Self-determination. Those aren’t abstract values in this work. They’re the difference between being trapped in someone else’s schedule and rules and a life that belongs to you.

9:20 [Narrator] Aaron’s story is a good example of how people can thrive when you, in his case quite literally, cut them loose.

9:28 [Robert Stack] Aaron was a fellow who was placed, he’s from New Hampshire. His mom is from New Hampshire and Aaron was placed. He has, he was called level three, whatever that means. Level three autism, which is a nice label. Everybody loves to give labels to people. So they gave him the level of level three autism, meaning he had pretty aberrant behavior. And everyone decided they couldn’t take care of him. And so they put him in the Judge Rotenberg Educational Center. The Judge Rotenberg Educational Center is based in Massachusetts. And at a very high cost, they kept him in this institution.

10:03 [Narrator] The Judge Rotenberg Center uses aversion therapy. The idea behind aversion therapy: pair an unwanted behavior with an unpleasant stimulus, like an electric shock or physical discomfort, until the brain stops associating that behavior with anything but pain. It’s been used on people with disabilities for decades. Most major medical and psychological organizations now condemn it as cruel and harmful.

10:31[Narrator] At Judge Rotenberg, the primary tool was electric shock.

10:36 [Robert Stack] They use a lot of electric shock therapy. And when I say electric shock therapy, I don’t mean like the kind, like the cuckoo’s nest where they shock your head. I’m talking about aversion therapy. They have backpacks, and the backpacks have a really nice battery pack, so they don’t lose any, any electric, uh, juice. And they can shock people that way.

10:56 [Robert Stack] That’s one method. They use a whole bunch of methods. They would, like, they roll people up in mats and sit on them. They use restraints and they, they tie them up. And that’s a normal thing. But electricity seems to be their most common way of dealing with behavior that they find is being aberrant.

11:14[ Narrator] So, what exactly is “aberrant behavior?” Well, basically everything that isn’t “normal.” Self-injury, yes, but also aggression, compulsive repetitive movements, non-compliance, refusing an instruction, and behaviors that in any other context might just be a bad day.

11:34 [Narrator] But back to Aaron.

11:37 [Robert Stack] He was tied to a conference table when we first met him. And so that was the first impression that we were given.

11:44 [Robert Stack] This just happened a few years ago. From what I can understand, it was under a court order from the Department of Justice or somebody that they had to get people out of these places and they had to do it pretty quickly. And I said, well, look, we can do it, but we just, we just started working with you. We have no homes for anybody to live in. We have no infrastructure. We have no staff. We have nothing. And they said, oh, well, can you put them someplace else? So I said, well, we have a vacant house in San Antonio, Texas. They said that sounds fine.

12:13 [Robert Stack] So I had the woman, her name is Samantha Cutler, do a FaceTime of the house in San Antonio and show it to the families and to the clinical people. And they go, oh, it sounds like a nice house, looks like a nice house, sounds like a plan. So they said, okay, let’s do it.

12:27 [Narrator] Then came the problem of how to get Aaron to Texas. No government ID. No commercial flight. The Judge Rotenberg Center offered a solution.

12:37 [Robert Stack] How are we going to get them to Texas? San Antonio, Texas and New Hampshire are pretty far. So they all opted to fly him.

12:45 [Robert Stack] However, the problem that they had was they had no government ID.  So they couldn’t put him on a commercial flight at all. And they were afraid to do so anyway. So the Judge Rotenberg Center said, what we can do is we will fly him down there on a Pilatus air ambulance. And the state of New Hampshire said, we’ll pick up the cost. So I said, okay. But my staff said. We’ll go. And they go, no, no, we don’t want you to go. So we said, okay, fine. My staff got very upset and they were saying we think we should handle it. I said, look, we won the war. We might’ve lost the battle of who flies him down.

13:18 [Robert Stack] Anyway, they flew him down and he was in handcuffs and, uh, leg irons and he had been shackled to this, uh, to this plane. It reminded me of the old Silence of the Lambs with Hannibal Lecter, you know, shuffling, with a grotesque mask on and the epitome of evil, but this wasn’t a movie. It was real.

13:38 [Narrator] Wonder what happen next? Right after Aaron was placed in the San Antonio house, something shifted.

13:45 [Robert Stack] He was placed into a small house in San Antonio. And in very short order, he was pretty much, uh, able to deal with, uh, all the things he had to deal with, including, um, going out into the community. He would walk down the street. People knew who he was. Staff would be with him. They took him to places like a rodeo. They took him to fast food restaurants. And he was very, very happy.

14:10 [Robert Stack] I said, you know, we have to get this guy some government ID. The guy had no government ID. That’s how little valued he was. And the, the funny part about it is they had, the staff had a hard time getting him a passport. Samantha, who runs the place and she was the one that really catalyzed the placement. She said, well, what, what is your problem with, why can’t you just get him to get a passport picture? Well, they said, in passport pictures, you are not supposed to smile. And it was very hard for us to get him not to smile because he loved to smile so much because he was so happy.

14:44 [Robert Stack] He was there for quite some time, and we wanted to, um, keep him there. But, uh, the state of New Hampshire said, no, no, no, you have to bring him back. So he wound up back in New Hampshire. And, uh, the last time I saw him, quite frankly, was probably around Halloween. And he was with staff, uh, picking pumpkins. And he’s doing well. No one ties him up. No one hurts him. No one holds him back. And he lives a life now that he never would have lived before. His mother is delighted with the progress he’s made.

15:11 [Robert Stack] He doesn’t speak, uh, but he’s an example of why I say silent no longer, the title of the book: “Silent No Longer,”  because how long are we all going to be silent no longer? And when are we going to speak up for people like Aaron who can’t speak up for themselves and say, “Hey, you really shouldn’t shackle me. You shouldn’t handcuff me. I didn’t hurt anybody. And I don’t deserve to be manhandled in such a grotesque, uh, way in such a medieval way. And I’m not a prisoner. I didn’t do anything wrong.”

15:42 [Narrator] Aaron’s story isn’t an isolated case. There are hundreds, thousands of cases like his. Robert knows their history all too well, and he needs you to know it too. Because it’s far from being. Even if most people think it is.

16:00 [Robert Stack] In the 70s, there were hundreds of thousands of people living in institutions and they, they made them farms. It’s kind of like, well, we’re going to put them all where they can be with each other. And all the people with intellectual disabilities can all be with each other. The doctor would say, well, the best thing for you to do is go into one of these institutions. And they, they built them more and more and more.

16:24 [Robert Stack] They’re going to be safe. No one’s going to hurt them. No one’s going to bully them. No one’s going to make fun of them. They’re not going to run away. We’re all going to, we’re going to make sure that they’re in our care. They’ll be with their own kind, which I always thought was kind of a disgusting comment, but that’s what they would say. They’d be with their own kind. The parents felt, well, they, they can take care of them. I can’t. So it’s in our best interest and in our son’s or daughter’s best interest for them to be in those institutions.

16:47 [Robert Stack] It was a way to separate them, put them in a place where they would get that quote unquote proper care. And then no one would have to worry about them again.

16:55 [Robert Stack] I think parents, by and large, were confused or they were sold a bill of goods by being told that institutions were good for their son or daughter to live in. And I know that it’s different now. Parents are starting to see that if their son or daughter lives in the community, they’re going to live a better life in general. And it’s also more social because they have more people that they can interact with. What we do is we believe that people with disabilities should live in the community and they should live a good life and they should be with other people.

17:29 [Narrator] Robert is still at it. Community Options operates across multiple states. He’s still moving people out of institutions. Still making the same argument, one placement at a time.

17:44 [Robert Stack] If I can get one more person out of a crappy environment of an institution, I feel like I’ve done something.

:00 [Narrator] Most conversations about violence against people with disabilities start with the individual. What happened?  Who did it?  What should be done?

:10 [Narrator] This is the Treat People Like People Podcast, and our guest Nancy Fitzsimons, professor of Social Work at Minnesota State University, Mankato, and co-author of the book Flipping the Story on Disability and Violence thinks that’s exactly the wrong place to start. Her argument: violence against people with disabilities is not an individual problem. It is a society problem. And until we flip how we understand it, we will keep failing the people most at risk. Here is Nancy:

:42 [Nancy Fitzsimons] I am a professor of social work at Minnesota State University, Mankato. I teach things that center around what we call macro social work practice, which is the policy side and community engagement side.

:54 [Narrator] Nancy works at the system level, changing the policies that shape people’s lives. Her entry point into disability was academic and personal.

1:05 [Nancy Fitzsimons] I’ve been connected to disability services and systems and people with disabilities and later advocacy work for my whole social work career. And I was practicing for about 15 years, and I had the opportunity to take on some projects that centered around abuse and neglect at the University of Illinois at Chicago. And that was what got me connected to this topic of issues of violence against people with disabilities and I’ve been connected to that work ever since.

1:37 [Narrator] It started with a phone call in 2007. A mother had noticed bruises on her 18-year-old son shortly after he arrived at a state-run facility called Minnesota Extended Treatment Options, METO. The staff had routinely put him in four-point restraints, metal handcuffs and leg hobbles. And they had threatened the mother when she tried to withdraw her consent.

2:03 [Narrator] A year-long investigation by the Minnesota Office of the Ombudsman for Mental Health and Developmental Disabilities followed. Their 2008 report was titled Just Plain Wrong.

2:16 [Nancy Fitzsimons] What they found is that a significant portion of the men and women, who were required to live there, were subjected to horrific treatment in the form of restraints, used unchecked for some individuals up to well over 250 times.

2:36 [Narrator] One resident had been restrained 299 times in a single year. For behaviors like touching a staff member’s shoulder. Touching a pizza box. Talking about running away.

2:52 [Nancy Fitzsimons] One of the hard parts, that when you read the report, is that you see as though it was justified at all system levels. Administrators who ran the facility, the front-line staff who implemented, they justified their actions because they saw some of these individuals as the worst of the worst. As though somehow the human beings that were experiencing this deserved it or it was their fault.

3:18 [Nancy Fitzsimons] It’s  pretty egregious. And it really makes you wonder how many things are happening in other places that never get this kind of attention.

3:27 [Narrator] Just Plain Wrong triggered a federal class action lawsuit. The settlement legally mandated Minnesota to create the Olmstead Plan in 2013, a roadmap for ensuring people with disabilities could live full, integrated lives in their communities. But when that plan was finalized, it contained nothing about abuse and neglect.

3:52 [Narrator] Nancy was asked to co-chair a subcommittee to fix that.

3:56  [Nancy Fitzsimons] The subcommittee was made up of at least 30 people connected to this issue. Many were people with disabilities. We really thought about who the stakeholders should be to come talk about. Let’s understand the problem and let’s think about solutions. So we did this work for about six months together. And out of that came a document, The Comprehensive Plan to Prevent Abuse and Neglect of People with Disabilities.

4:23 [Nancy Fitzsimons] One of the things that I think is different is we really wanted to think about this problem comprehensively. And we really wanted to think about prevention using the public health model’s understanding of prevention. So a lot of times we use the word prevention and like what do people really mean?

4:41 [Nancy Fitzsimons] But if you use the public health model there’s prevention, primary prevention. Like you really want to stop things from ever happening. And what would that look like? And then, you want to think about ways in which we reduce risk, which isn’t the same as prevention, but we certainly want to put measures in place to reduce risk. We certainly want to put measures where we have much more effective early response systems, where we can quickly detect, and then respond when abuse and neglect happens. And we also want to put measures into place to correct how things aren’t working.  And to improve those systems. So that framework framed our work, in terms of thinking about what comprehensive would look like.

5:27 [Nancy Fitzsimons] Looking at what we could do at all those different levels, because most of our system really is a response system. We teach people to watch for certain things to happen. And then if they happen, then they’re told where to report. So that really isn’t primary prevention.

5:43 [Narrator] Almost two decades after that first phone call, there was still work to be done. In their 2026 book, Flipping the Story on Disability and Violence, Nancy and her co-author, Dr. Patsy Frawlie from Australia, built their arguments around a well-established framework called the social ecological model. It was originally designed to understand how violence occurs across four levels: individual, relationship, community, and society. The traditional model places the person at the center and works outward. Nancy and Patsy reversed it.

6:21[Nancy Fitzsimons] When Patsy asked if I would collaborate with her on this book, we were mapping out the book, we kept trying to write the book with the individual chapter first. And then we realized all we needed to do was flip the order. By the time you got to the individual level, the stage was set for what you did at an individual level from a totally different understanding of the work.

6:46 [Nancy Fitzsimons] We reversed the order, placing society at the center and then moving outwards, with the understanding that people with disabilities need to be interwoven throughout each of these levels. They need to be at the forefront, leading, and informing.

7:05 [Narrator] The really important message is in the subtitle: People with Intellectual Disability and Allies Leading the Change. Not being helped. But LEADING.

7:17 [Nancy Fitzsimons] It is only people with the lived experience who can really talk to the issue and what needs to change to challenge people’s stereotypes and belief systems of disability, the best people to do it are people they themselves, right, because they are living, breathing, real-world examples of the opposite of what people think about a person with a disability is and what they are capable of doing.

7:43 [Nancy Fitzsimons] We’ve both been connected to working with people with intellectual and developmental disabilities and the disabilities community more broadly. But it’s not our lived experience. What we needed to make sure we did is to make sure that we are centering  the people and the programs and the stories. The book is meant to open up possibilities and ideas.

8:03 [Narrator] At the heart of the flipped model is a concept Nancy keeps returning to: ableism. Many people these days have a basic idea of what ableism means. But Nancy wants us to understand the full extent of the word.

8:19 [Nancy Fitzsimons] Ableism is being left out because the world is not built for us in mind. Ableism is when disabled people are treated badly because of their disabilities, both in how one person treats another person and also how people are treated in our society as a whole. It is about being excluded. It is about not being seen. Not being valued. Not being heard. It is about not being part of your community.

8:45 [Nancy Fitzsimons] There really is a diversity of body/mind, the ways in which our bodies exist in this world. And that the idea of this is that when you start to really unpack that, more and more people can start to recognize how our society, often times, has [a] very narrow scope of what is preferred, what is valued. People with disabilities doing this work are actually doing is breaking down barriers for many people in our society.

9:14 [Nancy Fitzsimons] For disabled people, especially people with a disability that is visible, the way they are treated comes from a place of what we call presumed incompetence. People operate under their own presumptions;  untested, unchecked, unchallenged. And that ultimately results in individuals becoming invisible, being erased, being unseen, being discounted. This is not necessarily intentional, but it’s a byproduct of systemic ableism.

9:45  [Nancy Fitzsimons] This is not an uncommon experience, at all, for people across the spectrum of disability when it’s apparent, or somebody believes that somebody has a disability; is that the  non-disabled person will speak to the person without a disability, right. They’ll ask somebody else: what would they like or what do they think or how are they feeling?  Again, often times talking right in front of the person as though they are not there. I mean how dehumanizing that must be.

10:11 [Nancy Fitzsimons] A colleague of mine, Karen Harvey, she writes in her book about trauma in the lives of people with disabilities. And she says: “With the exception of those bold enough and strong enough to demand the lives they want, many wonderful human beings continue to live in the shadows of human life, a product of systemic ableism.”

10:31 [Nancy Fitzsimons] How many people are invisible and discounted? And we’re trying to change that.

10:39 [Narrator] Invisibility is not passive. When a person is unseen, unheard, and presumed incompetent, something else moves in to fill that space. Assumptions. Excuses. Systems that look the other way. That’s the ableism Nancy is calling out, and she said “It is not just a social problem. It is what makes violence possible.”

11:05 [Nancy Fitzsimons] Ableism drives violence in terms of thinking about the negative stereotypes about people with disabilities and how those stereotypes as belief systems shape and influence how people are seen, how people interact with people, the policies that we create, the systems we create.

11:24 [Nancy Fitzsimons] One of the drivers is accepting or normalizing violence, disrespect and discrimination against people with disabilities. You will hear this: somebody will excuse or justify the behavior of a partner, or a caregiver, of a person with a disability, who has engaged in what we would say is harmful behavior, abusive behavior, but it’s justifiable under the circumstances, because this person has a disability. The partner or the caregiver must be this wonderful person, this angel person. “Oh you just do God’s work.” Things like that.

11:58 [Nancy Fitzsimons] But when you think about that, what that does is, it sets up this dynamic in which the behavior can be excused and easily justified. That’s an ableism problem that has  ramifications for people at the individual, the relationship level.

12:12 [Nancy Fitzsimons] Another one of those is controlling people with disabilities decision-making and limiting independence. Guardianship, which is sometimes necessary, but most of the time is just a reflexive practice. Our education systems often times  reflexively and systematically tell parents of children with intellectual and developmental disabilities that they need to get guardianship as soon as their child turns 18.

12:37 [Nancy Fitzsimons] When you appoint guardianship before a person is even ready to start really beginning to assert themselves, all of those decisions that people learn to make with support are just taken away.

12:50 [Narrator] And ableism does not operate alone.

12:53 [Nancy Fitzsimons] We don’t see often people with disabilities as whole people. Vulnerability and risk for violence is compounded when a person is a member of multiple marginalized groups in our society. When we fail to look at this from an intersectional lens, we’re denying the whole humanity of that person, reducing them to their diagnostic label, their disability label, and we’re also then discounting or ignoring all these other identities and lived experiences that make up that person.

13:24 [Nancy Fitzsimons] The movement of disability justice, which comes out of Black and Brown disabled people who have been marginalized within the disability rights community, has really opened up thinking about those intersecting identities. Disability justice work is connected to racial justice work, gender justice work, LGBTQ justice work, as it’s connected to class. What it’s doing is saying is that we have to doing this work in community.

13:53 [Narrator] Which brings everything back to a single word: power.

13:59 [Nancy Fitzsimons] Everything, to be honest, goes back to thinking about that power and who has power. The people in our society who are most likely to experience violence, to not be believed, to not get justice within the systems created to seek justice, are the least powerful people in our society.

14:17 [Nancy Fitzsimons] Until people with disabilities are fully included in all aspects of public and political life, in spaces where these decisions are being made by people in positions of power, they will lack the individual and collective power to change the conditions that make them more vulnerable to violence in all of its forms.

14:38 [Narrator] Changing systems starts with changing who has a seat at the table. But for people with disabilities, getting that seat has never been automatic. It has required training, networks, advocacy, and allies. Nancy points to programs that have been quietly building that pipeline for decades, one person at a time.

15:00 [Nancy Fitzsimons] Partners [in] Policymaking has been around a long time. I remember Colleen Wieck telling the story of what inspired her. It was a parent was going to testify at a congressional hearing and realized that nobody had prepared them for what they were going to be doing. That was the beginning of that program.

15:19 [Nancy Fitzsimons] And one of the things that I think was really unique, when the created the program, it was designed to be adults self-advocates. Adults with intellectual developmental disabilities paired with parents of children with disabilities, learning together.

15:32 [Nancy Fitzsimons] Dr. Wieck said: “If it was just parents with children, you can’t see the future. You’re really only thinking about how do I advocate for my child for what they need right now.”  By having adults who identify as self-advocates people with intellectual developmental disabilities learning together, changed the conversation. Because the fact of the matter is, probably every self-advocate individual, probably had their parent told by some professional that their child was never going to achieve this, that, or the other. And so now all of those, you know, once children are now adults who have defied what those professionals, quote unquote professionals said their capacity was. That is really powerful.

16:16 [Nancy Fitzsimons] Knowledge is power, right. It is not just what you know. It is who you know. The other part about Partners in Policymaking, and other similar kinds of programs is what it does to build social capital. To build social connections, because that is how we change things. We don’t do this individually or in isolation. We do this in community.

16:40 [Nancy Fitzsimons] If you want people to be part of community, you have to do community building work. We never did it. We never did it. We built all these little group homes and all of these little spaces in which people never became part of the community because we didn’t do that work.

16:55  [Nancy Fitzsimons] In our book, what we say is, that it is never too late. You’ve got to be doing community building work in partnership with organizations, systems, and people who care about this issue.

17:08 [Narrator] But community building does not always look like policy work or advocacy training. Sometimes it looks like a rehearsal room. A canvas. A stage. The places where people show up not because they have to, but because something there calls to them. Nancy found that some of the most intentional, effective work of inclusion was already happening in creative spaces.

17:31 [Nancy Fitzsimons] One of the great joys of doing this book was being able to profile people and programs and organizations that we love. Creative communities, art, music, theater, wherever they may be. This is where many people with and without disabilities find community. This is where they find a sense of pure acceptance. And where they find joy. They can just be themselves.

17:57 [Nancy Fitzsimons] These are often really safe spaces where people can talk about their experiences and tell their individual and collective stories. Where someone who has a similar experience tells them in ways they might not have heard or weren’t ready to hear, that you shouldn’t be treated like that. Where you see that you are not alone. There’s power that comes from being not alone.

18:20 [Nancy Fitzsimons] Just like there is ableism, there is internalized ableism. How people experience it and start to see themselves.

18:26 [Nancy Fitzsimons] In relationships, that power is often used to control the other person. Many of these behaviors that are used with people with disabilities, sometimes in partner relationships, sometimes in support relationships whether they are paid or not paid, they create the conditions for violence to occur and to be tolerated in our society. Everybody at the relationship level has a responsibility to step back and to really think about the nature of relationships.

18:58 [Narrator] It is easy to get lost in the systems and frameworks and to forget that all of it, ultimately, comes down to one person. One life. One set of choices that either belong to someone or have been taken from them. Nancy’s model starts at the societal level for a reason: because that is where the conditions are set. But the goal was never abstract. The goal is a person in the driver’s seat of their own life. So what does it actually look like when the upstream work pays off at the individual level?

19:31 [Nancy Fitzsimons] The fact of the matter is, is you do this work upstream, there is less work to do at the individual level, because we have done the work upstream. What we invest in downstream at the individual level  is really much more about empowering people. Helping people find community and discovering who they are and what they want in life.

19:53 [Nancy Fitzsimons] Right now, we really spend so much time having to navigate or support people who have been harmed. And some people deeply harmed. We need to prevent that.

20:05 [Nancy Fitzsimons] We profile a young man and his mom. And they talk about their journey like in a car. And how his mom had to move from, you know he’s in the back seat strapped in, and mom is doing all the driving. And slowly he learns, right, he can move, and he gets into the front seat. And eventually in his life, he gets to be in the driver’s seat and mom is there to support him.

20:28 [Nancy Fitzsimons] We cannot be doing this one at a time. We need to invest further up, right, because we are just constantly pushing back and pushing against all of the things that are upstream. We’ve got to change that up at that level.

20:40 [Narrator] Nancy has spent her career in the spaces most people never see. State institutions. Group homes. Policy hearings. Subcommittees with long names and longer agendas. She has written a book that tries to make all of that visible, and to hand people the framework to actually do something about it. So the question is: who needs to read it? The answer might surprise you.

21:08 [Nancy Fitzsimons] I sure would love parents to read this book. To think differently about the vulnerability that people assign to their minor-age or adult children with intellectual or developmental disabilities.

21:19 [Nancy Fitzsimons] Certainly people who are part of all of these systems. People who do advocacy work in lots of different spaces: disability connected, violence connected, racial justice work. This book, while it is about interpersonal violence, I actually think it’s about things much more broadly about how we create community.

21:38 [Narrator] And on an individual level?

21:41 [Nancy Fitzsimons] In whatever is in the work we do, step back and say: how are people with disabilities represented? How are they included? Because it does not matter the nature of what work you do, people with disabilities should be connected to it.

21:55 [Nancy Fitzsimons] People do not need any more charity, to be perfectly honest. They just need real relationships, real friends and real experiences. Reach out to invite people in to be a part of things because they might actually be interested in  whatever it is that you do. Each time you do that, you build community.

:00 [Narrator] There’s this thing we do with each other. All the time. This endless stream of words, and signs, and letters: Communicating. But what happens when you can’t speak up for yourself?

:12 [Narrator] Today’s story is about being heard. And about what happens when people who’ve never been heard finally get a voice. It’s about a man whose bubble burst, how he stumbled into a world that many Americans had never heard of. And how it changed everything he thought he knew about intelligence, dignity, and what it means to connect.

:34 [Narrator] This is the Treat People Like People podcast with stories from people who work alongside people with disabilities. And here’s Dan Reed.

:44 [Dan Reed] My name is Dan Reed and I live in Saint Paul, Minnesota, and I retired a year and a half ago. But about 40 years ago, I kind of stumbled into a new profession, and that’s working with people with disabilities. It changed my life and certainly changed the life of the people that, that I supported.

1:07 [Dan Reed] It’s been an incredible journey and I’m really excited to talk about it.

1:12 [Narrator] Before Dan Reed became the person he’s describing, he was someone else entirely. A guy riding the biggest wave of his generation, the personal computer revolution.

1:24 [Dan Reed] Well, in the old days, when I got out of school, I was real hot shot. I got involved with the release of something called the PC. It was just wild. I got caught up with some startups in the Twin Cities. I got involved with two that were great and both failed, of course. And then, I got involved with another. I got to work with executives all over the Twin Cities, whether it was General Mills, Cargill, U.S. Bank. I introduced them to a product that was the precursor to PowerPoint.

1:57 [Narrator] And that’s when his bubble burst, and he found himself in his brother’s basement, looking for a new job.

2:03 [Dan Reed] My partner had a heart attack, and died. And his family wanted to sell the business, and they did. So then, I went to work with another company, lost all my money. What am I going to do? And then there were no jobs. That was, you know, after the crash of the PC and all that.

2:20 [Dan Reed] And I was just applying for jobs, and I, I used to have a fancy condo up on Summitt Avenue in St. Paul to my brother’s basement. And then finally, I found this job in the paper. It was like marketing director for some company. So I went to the interview, and that’s where it all started.

2:37 [Narrator] That company was Midway Training Services. And to understand what Dan was walking into, you need to understand where they came from.

2:45 [Narrator] In 1965, a group of parents in Saint Paul faced an impossible choice: send their adult children with intellectual disabilities to an institution or figure it out themselves. They chose themselves. They rented space at Christ Child School, showed up as volunteers, and gave their sons and daughters a safe space to thrive.

3:08 [Narrator] They kept growing. Outgrew a church basement. Outgrew the Merriam Park Community Center and eventually landed on University Avenue in the Midway neighborhood.

3:18 [Narrator] By the time Dan arrived, Midway Training Services had been quietly proving for decades that people with intellectual and developmental disabilities were capable of far more than the world gave them credit for. The organization later became Ally People Solutions, a name chosen for listening to the people it serves, because what these families need most is exactly that: An ally.

3:43 [Narrator] But in the early days? The world Dan was stepping into looked very different.

3:49 [Dan Reed] It was started by parents who kept their kids at home. They’d been through it all. Your kid can’t do this. Your kid can’t do that.

3:57 [Narrator] Sixty years ago, most Americans had never met a person with an intellectual disability. Not because there weren’t any — but because they’d been made invisible. Sent away and warehoused by the system. And most people never even thought about them.

4:13 [Narrator] Dan, however, was about to think about very little else in the coming years.

4:18 [Dan Reed] The thing is because people had no idea about people, disabilities, they were locked away. Unless, you had a family member or a neighbor, maybe. We didn’t see people with disabilities. They were all sent away and quote unquote, forgotten. Imagine dumped at an institution, not a friend in the world.

4:36 [Dan Reed] They lived in horrendous situations. Like they’d be tied up to their beds and stuff. Oh, that was therapy. Well, there was no funding. So like, you know, the state House was like in Brainerd or wherever Saint Pete, whatever. At night there’d be one or two staff for hundreds of people. And that’s just the way it was.

4:51 [Dan Reed] As the state hospital started to close where these people were going to go? And I became unwittingly a part of that.

5:00 [Narrator] Dan’s job, it turned out, was something no one had really done before on this scale. As institutions began to shut down across the country, thousands of people with disabilities were moving into communities that had no idea how to receive them. And people with no special training were handed the mission to integrate them into society.

5:21 [Dan Reed] To find employment and activities in the community. Literally thousands of Dan Reeds around the country that had no training and were going to get them jobs. I went to every neighborhood meeting. I was active in all the different clubs. And I’m just very conversational and again, what are your needs at your business, just to see if there might be a potential fit.

5:44 [Dan Reed] I didn’t know any better, otherwise I wouldn’t have done it. You know, ignorance is bliss.

5:47 [Dan Reed] Two things that really hit me. They call them clients. If I talk to them 1.5% of the way the staff were talking to the clients we had. I’d be taken off shackles by the security. So that was made no sense to me.

6:02 [Dan Reed] They really didn’t have any, schooling, most because most of them came out of the state hospitals. But one thing that the first time I was there, one of my staff buddies said to me during orientation. None of these people have friends, only the ones that are paid for the privilege. And that stuck with me. How could people not have friends? And I thought, well, I’m going to see if I can become their friends, I mean, you got to get to know them before you can find them a job, and that’s how it really started.

6:29 [Dan Reed] And I used a lot of humor to try and get to them, cause that’s how I roll.  One day, I said, how was your weekend? And, you know, they’re kind of most, didn’t talk, but it didn’t matter, you know?

6:46 [ Dan Reed] And I said, well I spent, you know, I spent Sunday at the “Church of Saint Mattress,” and one of my buddies rolled his eyes and I went wait a second. You did that just like one of my other buddies would do that. And he just walked away. I went to one of our speech therapists. I told her and she goes well, that’s weird because humor is the hardest thing to so understand.

7:06 [ Dan Reed] Someone said, presume competency. Well okay, I did, and I could see it that they had intelligence.

7:15 [Narrator] Dan was onto something. He could feel it — there was more going on inside the people he was working with than anyone had ever stopped to notice. The eye roll. The reaction to a joke. Intelligence that had nowhere to go.

7:29 [Narrator] Then one night, he was watching the news. And what he saw was something called Facilitated Communication, or FC. It’s a technique that emerged in Australia in the ‘70s and made its way to the United States in the late 1980s. The basic idea: a trained support person provides physical assistance while a person with a communication disability points to letters on a keyboard or a letter board, spelling out words, thoughts, responses.

7:56 [Narrator] The premise behind FC is that some people have the cognitive capacity to communicate but lack the motor control or neurological pathways to do it independently. The physical support helps bridge that gap, giving someone access to a voice they already have.

8:13 [ Dan Reed] The first time I saw it was on ABC news, and a person like a caregiver would hold someone’s wrist and the person would point at letters on a keyboard, whether it was on like a little personal computer or whatever. We even just had sheets of paper. They would go to letters to answer questions or explain stuff.

8:37 [Narrator] And while researchers debated who was really doing the communicating, the person or the facilitator. For Dan and the folks at Midway Training Services the proof wasn’t in the studies. It was in the room. Yet it looked different for everyone.

8:52 [ Dan Reed] Oh, it varies. Some people are just you tap on the shoulder, it’s like an encouragement thing. Yeah. You got this, go ahead. And it also encourage them to verbalize too. You know. Yes and no goes a long way.

9:07 [ Dan Reed] Some people like the old-fashioned picture books because they’re handy. Um happy, sad. And those can’t be discounted, you know, especially if they know that they’re going to be listened to. When you listen to them or when you give them the opportunity to explain how they want to communicate. Everything changed.

9:23 [ Dan Reed] One thing about FC and all of it all was really controversial blah blah blah.  And we took it for what it was. Because we saw immediate changes. We connected and then we knew that there was more in there and that changed the whole relationship.

9:41 [Narrator] This is the thing Dan keeps coming back to. It’s not the technique itself, but what it unlocked. Because once the people he worked with had a way to speak out and be heard, it turned out they had a lot to say. And what they said transformed the way Midway Training Services operated.

9:59 [Narrator] It also challenged everything the staff thought they knew about communication, including that thing we all do every day: talking.

10:08 [ Dan Reed] Talking is about the least effective communication tool there is, cause it’s guarded. Whether it was what’s your favorite music? Why do you like this song? And then you just shut up and listen. So it takes two or three extra seconds. Who cares? You really care about them. You really care about their answer. Sit there. Or provide other things. Can you color it for me? Can you find it in a book? I got all day. And once you have that trust, they’re calmer. You’re calmer.

10:38 [ Dan Reed] It is almost a little overused, but there’s a real power there, because it’s so respectful. Once you get there and connect, you pick up all their communication beyond verbal.

10:52 [ Dan Reed] They knew we knew they were smart. That was the most important thing. That they cared about themselves. They cared about other people. They had dreams, well you got to listen, because if they know you’re if they know you’re going to listen, they’re going to do it.

11:05 [Narrator] Once Facilitated Communication was introduced, things began to change. And  fast. Not just for the individuals at Midway Training Services. But also for their families and the staff.

11:17 [ Dan Reed] One story that I was working with one of our guys, he just blossomed incredibly once he was allowed to communicate. So I called his family and I said, can you come in for a meeting? And they hated that. I said this isn’t bad. Because all they ever heard was how bad their people were. Imagine hearing that year after year after year, you know, like a little bit of you dies every day, every day you’re at these meetings.

11:43 [ Dan Reed] It’s going to be good. Come on in. Well, lo and behold, all of his siblings came. And siblings are very complicated. Lot of hurt feelings at home. It’s complicated and I, they sat down on it, and then finally I just said. I’m just going to tell you straight up, we think your brother is really smart. It was really quiet. I looked up and they were all sobbing. I go what’s wrong? When we were young, he was the smartest. And they sent him away.

12:09 [ Dan Reed] Swallow that one.

12:11 [Narrator] Empowering someone to use their voice and listening to it doesn’t just open up the present. It opens up everything they’ve been carrying. And the people who came through the state hospital system had been carrying a great deal.

12:25 [ Dan Reed] We listened to them and we tried to change what was upsetting them.

12:30 [ Dan Reed] As they got more normally treated. Things would flare up. One of our guys was doing phenomenally well. Off the charts well, after we could communicate and all of a sudden he started to get really withdrawn. Sad. Throwing stuff. And I go, what’s wrong? He goes, the nightmares are back. He was having post-traumatic stress about how he was sexually abused for years in the state hospital. It’s like you let your guard down a little bit and it pops up.

13:01 [ Dan Reed] And then another guy, oh, you would of loved all these guys, that this guy was like your old grumpy uncle, he just loved you, but he was grumpy, you know? And, he was, he threw some stuff. And I said come in my office. I go, what’s wrong? I said, you’re acting like a jerk. What’s wrong? Just like you would a friend. He start sobbing. And he goes, “When I was in the hospital, my best friend, they drowned him in front of me and I couldn’t stop them.”

13:29 [ Dan Reed] I’d throw some shit around too.

13:32 [ Dan Reed] They could talk about it and share their stories, you know, and they weren’t alone and they were supported. So FC opened everything up for us.

13:42 [Narrator] Communication didn’t just surface trauma. It created pathways to healing, to learning the truth, and to becoming a working member of society. Employment was actually a big deal, and the Midway Training Services team got creative about it.

13:59 [ Dan Reed] You’re there to support them, make them better. That’s a whole another very interesting thing about how to prepare them vocationally. Art was really significant. We combine social skills and music. So people could play the piano. They could play their favorite song. Why don’t you bring in your happy song? Bring in your sad song. Well, once you did that, then they can talk about why they’re happy or why they’re sad.

14:20 [ Dan Reed] We did art and social skills. One of our happiest, quote unquote, Down Syndrome, because they’re all happy all the time. If anything, they’re more emotional because they’re really cool people. So it was, “Well, how are you feeling today?” That was how they started it. “But draw it first and then we’ll talk.” So they had about five minutes and they drew their little picture.

14:42 [ Dan Reed] Got to him and he goes, oh I’m great. I looked down at his artwork. He was hanging himself. “Hey, what’s that about?”

“I can’t talk about it right now.”

“When you want to talk about. Let us know.”

Next week he talked about, he couldn’t do his whole job anymore. He felt like it was a failure.

14:57 [ Dan Reed] Anyway, we dealt with it there. We took that task off his to do. Job didn’t care. “Oh, sure. We love him. Yeah. We’ll have someone else do that for him.”

15:06 [ Dan Reed] The work thing was so big because many, many wanted to work. And like one of one of our best workers; it doesn’t matter if it was the best, the middle of whatever; just he was a good worker. He started having panic attacks on the bus. Well in the old days we would not know what’s wrong. He must not like the job. Pull him off the crew.  And it was typically on a Monday. He goes “I’m afraid I’m going to forget what I’m supposed to do at my job.”

15:35 [ Dan Reed] Oh, so the job coach said, “Hey, remember how we did it? We did like this.” Even had a little video. “Got it.” So it was to prevent a panic attack. He didn’t want to embarrass himself at work. It was sweet. Cool. That’s a simple accommodation and very understandable.

15:53 [ Dan Reed] Oh my God. Nothing more rewarding than have someone, being their job coach, and have them just do a bang-up job. And we were so successful. Well, we went from, what, three workers to 70. They were my clients. I’m there to make them look good, give them the opportunity to succeed, to be better. Because when they’re better, I’m better.

16:17 [Narrator] Here’s a question that Dan keeps circling back to. Not just what this work gave to the people he served, but what it gave to everyone else. When you silence a group of people, what do you lose? What ideas, what observations, what insights just disappear into the void? Because, as it turns out, the people who had been sitting quietly in the corner of the room for thirty years had been paying attention all along. Very close attention.

16:49 [ Dan Reed] I mean, there’s some real insightful people there, and one of the reasons that is they observe the world for 20 and 30 years. They were watching everything.

16:57 [Narrator] Dan’s book Paid for the Privilege was published in 1996. It features the kinds of conversations he started having once Facilitated Communication opened the door. Big questions. About justice. Sexism. Spirituality. Faith. What it’s like to grow up with a developmental disability or autism. Thoughts that had been forming for decades with nowhere to go. And every word is as eye-opening today as it was 30 years ago.

17:29 [ Dan Reed] I think there’s renewed interest in the book, because it’s our history and  we’re under attack again. And if you don’t remember your history, you’re probably going to repeat it. It is amazing how, how if you don’t maintain their advocacy, things just continue to slip away.

17:48 [Narrator] Despite his complete career shift, Dan has never really left the communication sector. From PCs to FC, he’s always been the guy who connects people.

17:58 [ Dan Reed] And a whole world of new friends and the appreciation for differences. And that quality of life doesn’t mean you have six cars and four houses. I mean, these were our true friends. I mean, we actually helped each other. They helped me help them. And, so, you know, very quickly I realized that this is what I was supposed to be doing.

18:18  [ Dan Reed] You know, hotshot baloney.