Inside Belchertown State School and How It Changed One Educator’s Life ~ 908

Tim Villegas:
Hey, y’all. Just a content warning about today’s episode: depictions of the living conditions of institutions for people with disabilities in the 1960s will be discussed, as well as certain attitudes about people with disabilities that were present early in the careers of those who worked there.

Carol Quirk, CEO of MCIE, worked in institutions first as a consultant and then as a psychologist. When she first opened the book Unsilenced: A Teacher’s Year of Battles, Breakthroughs, and Life-Changing Lessons at Belchertown State School by Howard Shane, memories of her experience began flooding back.

Carol Quirk:
Drab visually, where you’re seeing human beings in states that you would not want your own relative. The smells of people who are not bathed well enough, on top of that, whatever disinfectant might be used. The sounds of people moaning, groaning, calling out, shrieking, and laughing. It’s shocking. And then the other part for me is how we warehoused human beings and treated people in ways that we would not do today. We would not treat animals that way. That would not be acceptable. Those are all things that kept coming to me as I was reading his book.

Tim Villegas:
But if one good thing came out of working at these institutions, it put her on a path to advocate for inclusion for people with disabilities.

Carol Quirk:
It had a definite and significant hold on where I ended up. The first time I was working in an institution, I was working for a state agency. I was very young. I can’t believe they let me do this. We were consultants supporting people with developmental and intellectual disabilities related to problem behavior. I was asked to go to Southbury Training School to work with the residential supervisors who each supervised a building called a cottage—even though there was nothing cottage-like about it. They were supposed to learn behavioral strategies to teach their cottage attendants how to support problem behavior or use teaching strategies. I ended up staying on campus. They had housing for visitors and taught behavioral strategies. Each person had to take one resident to apply what they were learning and also take one cottage and do something as a group to improve the lives of the people who lived there.

Carol Quirk:
A psychologist who was monitoring what I was doing kept saying, “The only reason you can do what you’re doing is because you’re from the outside.” And some of the changes were things like: in the dining room, residents had to wear clothes, have forks as well as spoons, and receive their whole meal all at once—not piece by piece. And the attendants couldn’t yell. Those were the three interventions: fork as well as spoon, meal all at once, and no yelling. Wildly successful. I couldn’t believe that this psychologist, older and more experienced than me, couldn’t do what I was doing. I had to believe that you could make change from the inside. So I deliberately sought a position in an institution. I was qualified as a psychologist and got a job in North Carolina.

Carol Quirk:
One of the first people under my supervision was a young woman who spent 23 out of 24 hours in a straight jacket. She could speak a few words, had severe self-injury, and used a wheelchair when out of the straight jacket because she couldn’t walk due to lack of exercise. Within a year and a half, she was walking, using words, dressing herself, feeding herself, and attending the school on the grounds. But that influence was personal, just like Howard Shane’s influence was very personal. It didn’t change the system. I saw that I could make change in the lives of a few people, but I was not in any position to tell those above me what to do.

Carol Quirk:
I came to the conclusion that the only way to make change was to have a high level of influence or be from the outside, where you could act in a way that gave responsibility to the people who were there but influence them to make changes to better the lives of people with disabilities. I knew I had to learn things—systems change, how to run a business, budgeting, teaching strategies. So I got my doctorate and took coursework in education and business to figure out how to do something different to make a difference.

Tim Villegas:
So yeah, it really did put you on the path you are now. Okay. What would you want anyone who’s listening to this interview or reading Howard’s book to learn from this experience—from your descriptions and from Howard’s story?

Carol Quirk:
I think I would want them to think about the assumptions they make about people with obvious disabilities, especially when they see them in a group. In both institutions I was in—residential facilities—the units or cottages and the descriptions I gave you about people moaning, groaning, rocking. I saw young people eating threads they tore off their sheets or clothing.

This contrasts with several years later, after this experience, I went to a conference specifically for autistic people who used augmentative or alternative communication or typed. There were very few non-autistic people other than helpers—family members, aides, or service providers. Nearly 50% of the attendees were not only autistic but severely impacted in terms of communication and behavior.

Carol Quirk:
I stood there and they were all doing the same things I saw in the institution behaviorally. These are communicators—maybe in alternative ways—but people who express their thoughts, choices, and interests. That hit me like a blow. What had we done as a humanity where we warehoused these people, assuming they didn’t understand or had no cognitive ability? That is not true. How many of them were actually autistic people who couldn’t communicate?

So I think the thing I would want people to think about in today’s world is when we put students with significant cognitive disabilities in a separate classroom for most of the day, we look at what they’re doing and see children who are not readers, barely communicators, thought not to be able to achieve grade-level curriculum. Maybe they won’t ever, but our whole assumption about who they are once they’re in a group is to “other” them and think of them as less—less capable, less knowing. Our expectations drop, and they don’t get exposure to social opportunities, let alone academic ones.

Carol Quirk:
I know Howard said in his interview that we have to think about times when it’s not all about inclusion. We have to think about times when we can teach specific things a person might need, especially if they need alternate communication or have other learning needs. I agree that for many people, there may be that intensive time for specific instruction. But inclusion is not just about place, as we always talk about at MCIE. Yes, you may have those times for very specific, unique instruction, but inclusion is really about relationships and opportunities to experience what the rest of humanity is experiencing.

Tim Villegas:
My name is Tim Villegas, and you’re listening to the Think Inclusive Podcast presented by MCIE. This podcast exists to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. To find out more about who we are and what we do, check us out at thinkinclusive.us or on the socials—Facebook, Instagram, or Twitter. Also, take our podcast listener survey. Your responses will help us develop a better podcast experience. Go to bit.ly/TIpodcastsurvey to submit your responses. We appreciate it.

Today on the podcast, we talked to Howard Shane, author of the book Unsilenced. He is also an associate professor at the Harvard Medical School and the director of the Autism Language Program at Boston Children’s Hospital. We talk about what it was like to work at Belchertown State School, an institution for people with disabilities in the 1960s. We also highlight some of the stories from his book, including how some of his students used an early form of augmentative and alternative communication. Thanks so much for listening. I’m glad you’re here. And now, our interview with Howard Shane.

Tim Villegas:
Today on the Think Inclusive Podcast, we have Dr. Howard Shane, associate professor at the Harvard Medical School and director of the Autism Language Program at Boston Children’s Hospital. He has designed more than a dozen computer applications used widely by persons with disabilities and holds two U.S. patents. He’s received the Honors of the Association distinction from the American Speech and Hearing Association, to which he is a fellow. In 2019, he received the Frank F. Kleppner Lifetime Clinical Career Award. He’s also received the Golden CIN Award for innovations in technology from the United Cerebral Palsy Association, authored numerous papers and chapters on severe speech impairment, lectured throughout the world, and produced numerous computer-based innovations enjoyed by persons with complex communication disorders. Howard Shane, welcome to the Think Inclusive Podcast.

Howard Shane:
It’s a pleasure and an honor to be here.

Tim Villegas:
I’d love it if you would introduce yourself to our audience of educators and families of children with disabilities. We’re going to talk about your book Unsilenced, but maybe people don’t know who you are. Would you spend a couple of minutes introducing yourself?

Howard Shane:
I’m Howard Shane, as you mentioned. I’ve been at Boston Children’s Hospital for the past 44 years, where I’ve had the opportunity to see, I estimate, over 10,000 children in our clinics. My professional focus has really been working with children who are minimally verbal—sometimes called nonverbal or non-speaking—children with significant complex communication problems.

Tim Villegas:
Could you set the stage a little bit on what the living conditions were like at Belchertown when you first arrived?

Howard Shane:
It’s important to understand me as a person back then. I had just graduated from college with a minor in education. I was going to be a history teacher, but there were no jobs in history teaching where I lived. The only job in education available was at Belchertown State School. I was accepted basically by a phone call. I had no preparation to work with individuals with disabilities.

I arrived at Belchertown, met the director of education, and went to the infirmary building where I was going to be the teacher. The moment I walked into the building, my life changed. You were assaulted by the odor, the noise. We toured the building and I saw young children living in dormitory-style rooms—30 people in a room, iron beds or cribs, women on the first floor, men on the second. It was nothing I had ever encountered or imagined existed. I was a pretty naive 22-year-old guy.

Tim Villegas:
You did have some training to be a teacher, although this was the job that was available. In the book, you talk about using students’ interests to guide them to learn. Was that something explicitly taught to you, or was it innate?

Howard Shane:
There was no real curriculum designed for me. I knew from my own approach to life that when something is of interest, it makes a significant difference in how you approach and learn about it. I had just finished reading the book Summerhill by A.S. Neill, which described a philosophy started in England where troubled teenagers were taught through personalized curriculum based on their interests. One student was interested in automobiles and mechanics, and his whole curriculum was built around that.

It was clear to me that I could do the same thing at Belchertown. I tried to incorporate that kind of thinking, and it’s a way of approaching education that’s followed me throughout my career.

Tim Villegas:
Let’s talk about making change. How long were you at Belchertown?

Howard Shane:
A year.

Tim Villegas:
Okay. So in that year, do you feel like you were able to make change from inside the institution, or did you feel like in hindsight, when you left, you were able to make more change?

Howard Shane:
I think this was the beginning of the deinstitutionalization movement. The impact I had was through communication with the Springfield Union, giving them information about what I thought were injustices in that situation. But clearly, leaving the institution and becoming more educated made a bigger difference.

I went to Syracuse and worked with Dr. Burton Blatt, Dean of Education. He had written a book called Christmas in Purgatory, where he went into institutions with a camera and wrote a poetic anthology. I was part of his Institute on deinstitutionalization. I also worked with Dr. Ruth Lindsey, a specialist in cerebral palsy communication. It was a perfect fit for me. I had the opportunity to meet like-minded people at Burton Blatt’s Center on Human Policy. It was a very exciting time—we were right at the threshold of change. Later, Wolf Wolfensberger joined the faculty. It was a very exciting time to be there.

Tim Villegas:
Your time at Belchertown really set your trajectory toward making change. Then all the skills you brought with you—developing programs for communication and improving the lives of people with disabilities—do you think you would have gone into this area if you hadn’t gotten that job at Belchertown? What if you had become a history teacher?

Howard Shane:
I think my life would have been completely different. I’d like to think I would have been a history teacher and liked it, but maybe I would have become bored. It’s hard to predict. Once I got to Belchertown and accepted where I was and what I was doing, it became an obsessive focus. I don’t know if I would have been as excited about history. Maybe I would have sold encyclopedias or cars. I just don’t know.

But that definitely set the trajectory. Family and friends say to me now, “You’re doing the same thing you were doing at Belchertown, only the opportunities are different.” Along came technology in the early ’80s—the confluence of deinstitutionalization and the computer revolution gave me and others the opportunity to invent and create different types of communication applications and hardware.

Tim Villegas:
A story in the book that I really love is how you describe the communication system you made. It was a clock, right? Maybe you could describe it for our listeners.

Howard Shane:
It occurred to me that when looking at a second hand on a watch pointing to numbers, why couldn’t it point to letters or pictures? I put a template on an old clock, removed the hour and minute hands, and just had the second hand going around. Then I worked with university students and a professor at the engineering school at UMass to build something that allowed this type of scanning.

We used a mercury switch attached to the wrist. By turning your wrist, it completed the circuit and would start or stop a light going around the circumference of a circle. It’s a historical look at the beginning of AAC. I don’t want to claim I was the first person to think of it—there was work going on elsewhere—but we weren’t in touch with each other. Eventually, it became what’s now known as augmentative and alternative communication. I was part of the formation of the name and got to know other people. It became a small industry of mom-and-pop stores. Now we take an iPad or Apple Watch and create incredible opportunities.

Tim Villegas:
Let’s talk about making change. How long were you at Belchertown?

Howard Shane:
A year.

Tim Villegas:
Okay. So in that year, do you feel like you were able to make change from inside the institution, or did you feel like in hindsight, when you left, you were able to make more change?

Howard Shane:
I think this was the beginning of the deinstitutionalization movement. The impact I had was through communication with the Springfield Union, giving them information about what I thought were injustices in that situation. But clearly, leaving the institution and becoming more educated made a bigger difference.

I went to Syracuse and worked with Dr. Burton Blatt, who was the Dean of Education. He had written a book called Christmas in Purgatory, where he went into institutions with a camera and wrote a poetic anthology. I was part of his Institute on deinstitutionalization. I also worked with Dr. Ruth Lyndsey, a specialist in cerebral palsy communication. It was a perfect fit for me. I had the opportunity to meet like-minded people at Burton Blatt’s Center on Human Policy. It was a very exciting time—we were right at the threshold of change. Later, Wolf Wolfensberger joined the faculty, which made it even more exciting.

Tim Villegas:
Your time at Belchertown really set your trajectory toward making change. Then all the skills you brought with you—developing programs for communication and improving the lives of people with disabilities—do you think you would have gone into this area if you hadn’t gotten that job at Belchertown? What if you had become a history teacher?

Howard Shane:
I think my life would have been completely different. I’d like to think I would have been a history teacher and liked it, but maybe I would have become bored. It’s hard to predict. Once I got to Belchertown and accepted where I was and what I was doing, it became an obsessive focus. I don’t know if I would have been as excited about history. Maybe I would’ve sold encyclopedias or cars. That job definitely set the trajectory.

Family and friends say to me now, “You’re doing the same thing you were doing at Belchertown, only the opportunities are different.” Along came technology in the early ’80s. That confluence of deinstitutionalization and the computer revolution gave me and others the opportunity to invent and create different types of communication applications and hardware. That was really unique and important to me.

Tim Villegas:
Let’s talk a little bit more about our educational system as it stands right now. I’m wondering if you see the system as two separate systems—special education and general education. I’d love to know your thoughts about how we can improve that. Is it just a matter of improving special education services to be more inclusive and have more technology? Or do we need another system?

Howard Shane:
I think we need a different philosophical orientation. I think we started with language—just calling it special education, and maybe even the word inclusion. I think what we need to be looking at is an educational approach where every child is seen as a child. Obviously, we want them to be with other children to the maximum degree possible. But if we call them “substantially separate” or “segregated classrooms,” that kind of language is all wrong.

We want children to be together. But part of it is a philosophy where children are just seen as children. Maybe it’s a utopian dream, but I’m reminded of a book I read years ago by Nora Gross called Everyone Here Spoke Sign Language. It’s about the deaf community on Martha’s Vineyard. Before it became a vacation land, many people from a particular region in England settled there, and they had a dominant gene that led to a lot of deafness. So a vast majority of people on Martha’s Vineyard signed.

In the book, the interviewer asks a woman about someone named Jack Jones. She says, “Oh, he was this tall guy with red hair and freckles. He was very strong.” Then the interviewer says, “Wasn’t he deaf?” And she replies, “Oh yeah, yeah, he was deaf.” That’s when we’ll clearly have an inclusive philosophy.

Howard Shane:
So how do we go about that? I don’t know the answer. But I think we start with children being in classrooms. Just as you get called out to go to band or some program, you go off and do specialized reading. Letting children be together as much as possible. At the same time, we have to be realistic—there are learning differences. You can’t just throw children with significant learning difficulties or who are minimally verbal into a class and expect them to learn. But there are ways of maximizing their interactions, bringing them into situations with learning, and letting them experience that.

It starts with how we get whole schools to understand that. I work with a school in upstate New York as part of a research project—the Fayetteville-Manlius School. In one of their elementary schools, we have a program. There are children in substantially separate situations, but every classroom in the school is named in a way that doesn’t separate them. One teacher’s class is “O’Neill’s Ocean,” another is “Jones’s Jupiter.” It’s a general ed classroom—not a separate classroom. So I think it comes down to language, technology opportunities, and a philosophy of maximum exposure. That’s the way I see it. There’s much to be done—a great deal of work in my little utopian dream—but that’s how I think it should be approached.

Tim Villegas:
I think a lot of people share that dream. I hope so.

Howard Shane:
Again, this is just the way I think. I know there are much smarter people than me who really think about these things.

Tim Villegas:
Right. That’s why I’m excited for our listeners to hear your story and your thoughts. We need to share our dreams with each other. I love the way you’re framing technology as a way our society can be more inclusive. I do think that’s our future. Thank you for your thoughts about that.

Tim Villegas:
Let’s talk about the future. You saw this technology and said, “I can use this to help students communicate, tell me what they want, make choices.” As we’ve grown in technology and capability, what do you see as our future? What are some things we could look forward to in expanding communication capability for people with disabilities?

Howard Shane:
This podcast is about inclusion, and if I take that theme and think about technology of the future—some of which is already here—I think it will have a real bearing on inclusion. For example, we just finished some studies using the Apple Watch to deliver cues to children on the autism spectrum. We compared the ability to read a cue on the Apple Watch versus receiving it on an iPad. They were comparable.

We did a small study to help children get used to wearing the Apple Watch, and another on usability—interpreting haptic and auditory cues. Being able to do that opens opportunities for what I call social pragmatic mentoring. If a child has behaviors that a teacher or family wants to reduce in the community, instead of saying, “Hey Johnny, stop flapping your hands,” or “You’re standing too close,” or “You’re chewing with your mouth open,” why not send a subtle cue? We’re working on those skills—giving reminders without calling attention to them.

Howard Shane:
Smaller, more wearable AAC technology, better voices, more childlike and natural voices. I’m picturing artificial intelligence. Behaviorists are getting better at analyzing behavior, but we miss the mark sometimes. What if we monitored heart rate or galvanic skin response to detect anxiety before behavior escalates? We could intervene early—throw them in the ball pit and let them relax.

AI could help us capture variables the human mind can’t track. Imagine: I had Wheaties for breakfast—maybe there’s gluten. All these little things get captured, and AI contemplates them to help us better understand behavior. The future will allow that. It’s going to be consumer-based, not specialized equipment—materials everyone can access.

Howard Shane:
In my clinical office, I had two posters: one of Jefferson Airplane and one of Jefferson Starship. People asked if I was a fan. I said, “They had good music,” but the posters were a constant reminder that you have to evolve—from airplane to starship. That’s what it’s been for me for 52 years: evolving, seeing what’s available, and obsessively figuring out how to turn it into something that helps a child who can’t speak or has a behavior problem.

Tim Villegas:
So you really see the consumer market for computers, watches, smart technology, and AI as something we’ll be using broadly—but certain people can use aspects of that technology to make life more accessible. Is that what I’m hearing?

Howard Shane:
Absolutely. We have a project going on now with augmented reality, where we’re trying to teach language concepts. I use augmented reality to take a farm scene and teach the concept of “pushing.” I have the farmer pushing the wagon, and I build that little sentence. Then the scene becomes alive as I’m looking through my iPad screen.

There’s so much excitement in this space. Children with disabilities—and children in general—are drawn to screens. So why not use that as a medium to teach? I don’t want to make it sound like I’m the only person doing this. The world is filled with people doing exciting work. I’m just so enamored with it all.

Tim Villegas:
Let’s talk a little more about our educational system as it stands right now. Do you see the system as two separate systems—special education and general education? I’d love to know your thoughts about how we can improve that. Is it just a matter of improving special education services to be more inclusive and tech-enabled, or do we need a whole new system?

Howard Shane:
I think we need a different philosophical orientation. We start with language—just calling it “special education,” or even the word “inclusion.” I think what we need is an educational approach where every child is seen as a child. Obviously, we want them to be with other children to the maximum degree possible.

But if we call them “substantially separate” or “segregated classrooms,” that kind of language is all wrong. We want children to be together. Part of it is a philosophy where children are just seen as children. Maybe it’s a utopian dream, but I’m reminded of a book I read years ago by Nora Gross called Everyone Here Spoke Sign Language. It’s about the deaf community on Martha’s Vineyard. Before it became a vacation destination, many people from a particular region in England settled there, and a dominant gene led to widespread deafness. A vast majority of people signed.

In the book, the interviewer asks a woman about someone named Jack Jones. She says, “Oh, he was a tall guy with red hair and freckles. Very strong.” The interviewer asks, “Wasn’t he deaf?” And she replies, “Oh yeah, yeah, he was deaf.” That’s when we’ll truly have an inclusive philosophy.

Tim Villegas:
So, as you were writing the book, was there a particular memory that gained new significance as you wrote it? Anything that made you remember something differently or more deeply?

Howard Shane:
I think that when I was writing the book, as I was capturing moments and situations, it was about the students and a mentor who came to my class and became a major force in my thinking. I think every 22-year-old needs a mentor to help shape who they are and where they’re going.

As I wrote about the students, it made me all the more fond of them and what they did for me. One student, who became a lifelong friend, had cerebral palsy—Ron. We’d meet regularly long after Belchertown. I was the best man in his wedding. We went to Red Sox games after he got out and was living in the community. He was just a good guy. He couldn’t speak, but he had a great personality.

I happened to have a clinic at Boston Children’s Hospital where he’d come to get the latest technologies. He was a popular person out in Western Massachusetts. He went to Foxwoods, he’d go drinking, and he loved the Red Sox. He wouldn’t have had that opportunity if institutions still existed.

Howard Shane:
Writing the book made me realize even more who these people were. I tried to make that part of the book—not just about the bleakness of the institution, but about what life was like for them and how the setting affected them. That’s how it came down for me.

Tim Villegas:
Well, Dr. Howard Shane, thank you so much for being on the Think Inclusive Podcast. We appreciate your time.

Howard Shane:
Thank you for having me.

Tim Villegas:
That will do it for this episode of the Think Inclusive Podcast. Subscribe to the Think Inclusive Podcast via Apple Podcasts, the Anchor app, Spotify, or wherever you listen to podcasts. Have a question or comment? Email us your feedback at podcast@thinkinclusive.us. We love to know that you’re listening.

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Thank you for helping us equip more people to promote and sustain inclusive education. This podcast is a production of MCIE, where we envision a society where neighborhood schools welcome all learners and create the foundation for inclusive communities. Learn more at [inaudible].work.

We will be back in a couple of weeks with our interview with Anthony Ianni, author of the book Centered: Autism, Basketball, and One Athlete’s Dreams. Thank you for your time and attention. And until next time, remember: inclusion always works.