Interview with Dr. Mary Ellen Rooney

Dr. Mary Ellen Rooney speaks with the clarity and conviction of someone who has advocated for disability rights in education for decades. Originally a classroom teacher with a degree in special education, she holds an Ed.D. from Columbia University's Teachers College, in the Department of Health and Behavior Studies' Program in Intellectual Disabilities and Autism. Dr. Rooney has built her scholarly and professional life around a single, unwavering mission: to champion and support disability rights in the classroom. Her work partners with parents, psychologists, caregivers, medical professionals, and educators to help all children with special needs get supported and thrive. At the heart of her approach lies a commitment to inclusion and advocacy for all children.

The transcript of our conversation below has been edited for brevity and clarity.

I thrive looking for answers. I thrive working with families.

Amanda Gutwillig: After you decided to be a teacher, what drew you to disability?

Dr. Mary Ellen Rooney: I always knew that I wanted to work with vulnerable populations, children with special needs. To work with children with special needs, you have to look deeply. You have to look at rates of breath, eye gaze, at the eyebrows going up… And I was good at that. I was good at kind of connecting… I thrive at looking for answers. I thrive working with families.

It doesn't always go well… everything's not pitch perfect, and every kid doesn't succeed. But I'm good at asking for help; I'm good at asking for experts. So, whatever it takes… let's see this child live up to their full potential. And that's the whole thing about self-determination… Being able to live up to your true potential and how to access that.

AG: What made you go into the field of autism?

MER: I don't know why I went into that versus another disability, but to some degree, the particular disability doesn't matter. When you study these things, you learn so much about universal design. It doesn't matter: autism, cerebral palsy, Down syndrome; you learn about the specific aspects of those particular disabilities which might pertain to a particular child, a particular learner. But in general, the tools you learn, you can add to your toolkit for anybody.

AG: Your undergraduate thesis was on mainstreaming. Can you tell me about it?

MER: Mainstreaming was when the doors were just opening for [special needs] kids to be in the buildings. It wasn't about inclusion; it was about mainstreaming so that the kids were all in the same spaces. The laws have changed, but we haven't yet realized what the law really meant to establish.

AG: How do you create an inclusive environment and curriculum and syllabus for people with all of these different intellectual and physical disabilities?

MER: All disabilities are on a spectrum… That's a heavy ask. One of my dreams was like the olden days, like the Little Red Schoolhouse; everyone just came. It didn't matter… you just open your doors, and you teach, three-year-olds and six-year-olds, or you'd have kids with wheelchairs, or kids… it didn't matter… it's open to everybody, and you just do it.

But we know that can't happen. There are laws, regulations, and compliance. We know a lot more about stages of learning and stages of emotional development. But we also know that children grow when they are with their peers. And there are two pieces to the idea of peers. There are chronological peers, but that's not the end game. There is chronological and developmental… So you can have a six-year-old who's on a functional level of a 5-month-old. You have to kind of weigh that, too, when you're trying to create these environments.

AG: Tell me a little about teaching medically fragile children like at the Elizabeth Seton Center?

MER: It's incredible. There are kids who have a feeding tube in class, kids who have respiratory therapists in the classroom with them, or kids who are lying on a stretcher in class. The whole project of the center, which provides medical care and education, reminds us of the fact that we're good caregivers, but we can't forget the cognitive; you have to manipulate and strengthen the brain no matter what. It's easy to fall into caregiving, but you have to stimulate the brain, too. Children, any human, to keep their dignity, to keep their identity, have to be able to do as much as they're capable of doing.

AG: Tell me about your philosophy of education and inclusion.

MER: Did you ever see that graphic with the boxes and the fence? It's really powerful about removing barriers and making equity, right? But that's not quite right. You don't put soap boxes for somebody to stand on to see over a fence. You get rid of the fence. So that's what I tried to do. So for me that means: the student tells me, or we figure out together, how they learn. Then, I tell you what I expect of you. That's the idea: the student and the teacher make a contract together. Ultimately, there are so many ways that people learn. I think it's important that we talk about the ways to give them autonomy.

AG: How do you meet the challenges in teaching children with special needs?

MER: There are always challenges. The expectation is that it is a process. You want change to happen quickly, but it doesn't… I actually put a kitchen sink in my office, right? It's not working, but an actual kitchen sink.

People ask me why I have that. Because when teachers come to me and say, "I tried everything." You could not have tried everything. Did you try the kitchen sink? I'd bring out my kitchen sink and say, did you try the kitchen sink? It's an old adage. You cannot possibly have tried everything. And trying everything is getting different perspectives, including families, the individual themselves, OTs, PTs. Just throw every crazy, magical idea down. Let's figure this out and give it time. Don't give up.

AG: Why is representation so important? Why is it important for children with disabilities to see themselves in a variety of media?

MER: Great question! In general, representation is so important. Every individual is part of the world, the community, right? And if you weren't represented… think of why it's important by thinking about how it would feel not to be represented, right? Being the only one, being the person who is ostracized, or the person you constantly have to explain yourself to, even if people aren't being negative or bad to you… I have to keep explaining myself, like, why am I different? Why?

Or even the opposite? Why do you need so much help? Let me help you. You don't want to be the person who needs help all the time. You want to be able… Plus, there's more to me… anybody, any person, than what meets the eye, and that's what's really important.

AG: Can you speak more about representation and community?

MER: Yes, it's like even with the civil rights movements… where we proclaim everyone should have equal rights and responsibilities and being parts of community, yet there's so many people still being unseen. How can we say we believe in that, but yet constantly not see people? And I don't mean like visually, but just like, as part of the same community. So, representation is so important in this world. We're so unique, but we're more alike than we're different… We're definitely more alike than we're different. For children with disabilities to see themselves in different ways in our literature and in our classroom, to see children who use wheelchairs, to see someone with a cane.

Some of the visuals, or somebody who's using sign language, somebody who speaks Spanish, somebody who speaks Chinese, somebody who has darker skin, who has multi-skin because they have, you know, some kind of condition… different types of hair, different types of body types. The more exposure, the more connected we are, and I think that's so important. I think it sounds so, so sunshine and roses. It should be that simple. That's what gets me frustrated. It should be that simple.

When people say I don't see color… that's not a good thing. I know it's well-intentioned to say that. You want to see, you want to celebrate. You want to look at; you want to ask questions. You want to learn about it on your own. And I think that's something we have to teach children at a younger age because we have to change how adults feel… [They] use terminology sometimes that was accepted, right? That was accepted in the past. It's important to stand up for those moments too if they use a certain word. Again, with no malintent, but they don't get a pass.

AG: Let's talk a little bit about representation in various forms of media.

MER: [With] different forms of media… it's [about] exposure, but it's also about what you were talking about—books on the shelf. Exposure is good, but somebody has to start the dialogue. We have checklists in classrooms that you have to have multicultural persons in your classrooms. You have to have multicultural books; you have diversity, neurodiversity; you have to have cross-gender kind of things. You have to do all of these things, and we do it. But if kids don't bump into it and teachers, or adults, don't know what to say, then it might as well just be in your room.

That's like mainstreaming versus inclusion. I'll give you an example. Our kids here are mesmerized by my freckles. They are so mesmerized by my polka dots and my freckles. They ask me questions all the time, and it was an opportunity to say, wait, put your hand out. Wait, wait a second. Wow, we're all different. Look at this. You know? We have to be intentional.

Like you can get multicultural dolls with disabilities. Or, like, look at these things on my desk. This little doll is supposed to represent a child with Down syndrome. In theory, yes, because if you look it up, it has inset eyes, has the close, like the nose goes up, the kind of low-tone body. But if you ask somebody with Down syndrome, who we had here once—it was an adult—they said, no, that does not represent me. You know, so it's a stereotypical Down syndrome. So, this guy lives on my shelf now in the classroom. So anyway, that was a long way of answering your question, but either way, it's important.

AG: I'm also wondering what changes you would like to see in the future, both in the classroom and outside in general.

MER: I would like to see opportunities for all people: living wages, jobs, accessible jobs in the community, not just after-school teams. You know, more opportunities. Best Buddies does a really good job at that… I wish more companies would know about job carve-out, which means you could do work tryout programs where you send your listings to places that will reach people living with disabilities. You know, I would like people to embrace that the work site is also all-inclusive and accommodating and welcoming of neurodiverse populations, whatever it is. Ultimately, job matching is really important.

I also think in schools that—I know some children have very severe and complex needs, and those children need support that schools truly cannot provide—but I'm hoping a day will come that anybody can just come to your community school, like the Little Red Schoolhouse. I mean, that's a pipe dream, but even if you can do multi-age classrooms where kids can move on when they're ready, kind of progressively. But I know it doesn't work that way. Some cultures do have it; some communities, some nations do it that way, and kids get the knowledge, and they move on to the next step. I think that even today, we have special-needs classrooms, but all our classrooms have children with special needs, and no matter how many times we say it or talk about it. Teachers understand it, but somehow the message doesn't get through to many of our families.

So, I think that we need more conversations with families about what inclusivity means. We have great mission statements; you have all the buzzwords. We feel it. But how do you do it, if your workforce is not diverse? How do you do it, if your leadership isn't diverse? I think, personally speaking, what I need to do better is send that message.

If you just walk on the streets, or you go in the subway, you can see how many people are not accepting of people with disabilities, or people who look a certain way or seem a certain way, even with respect to their mental health… Let's figure out what they can do… That's how I feel. I know it takes money too, but I don't think it's at the forefront of everybody's political platform right now.

So, what we can do is one child, one family, one teacher at a time.