In the early 1970s it was rare to see anyone with a disability on television. But Emily Perl Kingsley helped change that as a writer on Sesame Street. Learn how the birth of Emily's son Jason with Down syndrome inspired her to use the show to increase representation in media for people with disabilities.
In this week's episode Emmy-award winning writer Emily Perl Kingsley shares insights from her decades-long career as a writer on Sesame Street. After Emily's son, Jason, was born with Down syndrome in 1974, she pushed to make the show more inclusive, producing a variety of episodes focusing on a range of disabilities.
Emily has written more than 20 children's books. And in 1987, Emily wrote the widely read essay, Welcome to Holland, which compares the experience of finding out their child has a disability to having a trip to Italy rerouted to Holland. That essay has been reprinted tens of thousands of times throughout the world, translated into multiple languages, and has inspired millions of families with hope that they would have the same kinds of opportunities and experiences.
About Northeast Arc
Northeast Arc was founded in 1954 by parents of children with developmental disabilities who wanted to raise their sons and daughters as full members of the community. By having the courage to challenge professionals who told them their children could not be educated and would not live to become adults, these parents created the systems that enabled them to attend public schools, develop friendships, reside in the neighborhoods of their choice and to earn a paycheck. Over the years, our programs have expanded to support children and adults with a broader range of disabilities, including autism and physical disabilities. Today we serve thousands of people in nearly 190 cities and towns across Massachusetts. The goal of the Northeast Arc is to ensure that children and adults with disabilities are able to live, work, engage in civic life and play in the community. We work toward that goal by offering a wide variety of programs including Autism Services, Day Habilitation, Deaf Services, Early Intervention, Employment Services, Family Support, Personal Care Assistance, Recreation, Residential and Transition Services. Northeast Arc is overseen by a volunteer Board of Directors composed of individuals with disabilities, parents and siblings of people with disabilities, and business and community leaders. Programs are operated by a professional staff led by a Chief Executive Officer with 35 years of experience at the helm of the organization, and are supported by a large volunteer corps.
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[MUSIC PLAYING] Hello, and welcome to All Things Disability, a podcast from Northeast Arc. I'm Jo Ann Simons, the president and CEO of Northeast Arc.
When Jason was born-- this is the experience that so many people had, especially in those days, in the 1970s-- and the recommendation at that time was that we place him in an institution immediately before a bond was established. Which is so ridiculous, when you think you've been pregnant for nine months. What did they think was going on during those nine months, if not forming a bond?
In this week's episode, I'm thrilled to be joined by my dear friend, Emily Perl Kingsley, who is well known for her work as a writer on Sesame Street. In fact, an Emmy Award winning writer. She has 23 Daytime Emmys to her name. I've been lucky enough to know Emily and her son, Jason, for more than 40 years. Both of them have been pioneers in creating inclusive opportunities for people with disabilities.
Jason was born with Down syndrome in 1974, and Emily used her experiences raising her son as the inspiration to include people with disabilities in the show's cast.
Well, I remember so vividly the experience when he was just born, of never seeing anybody on television who looked like us, nobody who reflected our experience at all. Everybody was so damn perfect. Everybody was so beautiful.
Prior to Jason's birth, Emily used her role at Sesame Street to bring in the Little Theater for the Deaf onto the cast of Sesame Street, which was probably the first time people with disabilities were introduced to a prime time television show.
Emily and Jason have been featured in multiple TV specials and films. And some of you may remember Kids Like These, a screenplay that Emily wrote, that was brought to life on television, where Tyne Daly played her. I remember it so well.
She has written more than 20 children's books, books now that I read to my grandchildren, including Farley Goes to the Doctor. And in 1987, Emily wrote the widely read essay, Welcome to Holland, which compares the experience of finding out their child has a disability to having a trip to Italy rerouted to Holland.
That essay has been reprinted tens of thousands of times throughout the world, translated into multiple languages, and has inspired millions of families with hope that they would have the same kinds of opportunities and experiences that they expected.
Emily, thank you so much for being with us today.
It's a pleasure to be here, and so wonderful to see you. I've missed you. But it's wonderful to be here.
We'll talk about your career in TV in a few minutes, but I want to start by having you tell our listeners about Jason.
Jason is so fascinating. When Jason was born-- and this is the experience that so many people had, especially in those days, in the 1970s-- we were given the most horrible, negative prognosis, that he would never do anything, that he would never walk, or talk, or forget read or write, or anything like that. That he would basically start out small, and end up large, and we couldn't really expect anything else from him.
And the recommendation at that time was that we place him in an institution immediately, before a bond was established. Which is so ridiculous, when you think you've been pregnant for nine months. What did they think was going on during those nine months, if not forming a bond?
Anyway, so they were-- the doctors and professionals were recommending that we send him away before we got to know him, and never think about him again, and go home and tell our friends and family that he had died in childbirth. Well, I mean, that's just about the worst beginning to a relationship with your newborn baby that you can imagine.
And we were utterly terrified. And we had no-- at that time there was no other information about what to expect. And we were frightened out of our wits.
Fortunately, a wonderful social worker came along on about the third or fourth day, and said to me, there is something very new, very controversial, very experimental, and some people believe you can work with these children and maybe develop some very basic fundamental skills. Maybe he could be taught to feed himself, for example. And would you like to give it a try?
That was the first thing that made any sense to us, that you don't give away your baby without even giving it a try. So with great trepidation, we brought Jason home. And then that's when the adventure started.
He is amazing now. He's 48 years old. He lives in a small group home with two wonderful roommates. They have part-time staff. And he worked in a company, a mailroom, for 20 years. He's written a book. He's been on television. He's very articulate. He writes poems. He makes up jokes.
He's very, very funny. He's the world's authority on Disney films and American musical comedy. He's very, very intelligent and very funny. And, yes, he has challenges. And he has-- it's a disability, after all. But he's so different from what they predicted, it's quite amazing.
Well, I think a lot of that has to go to you and Jason's father, your late husband, Charles, and the deliberate effort that you made to give Jason a stimulating and inclusive childhood. And what kind of things did you and Charles do? I remember some of them, and I hope you can touch on a few of them.
Well, we sort of we're making up everything as we went along. But we were told by a wonderful, wonderful mentor, who just recently passed away-- Dr. Margaret Giannini, who was the head of what, in those days, was called the Mental Retardation Institute, which fortunately has changed its name to the Westchester Institute for Human Development.
But she said to us, stimulate, stimulate, stimulate. Whatever you do, just surround him with sound, and music, and input, and talk to him all the time. And so it gave us some inspiration to be creative. And we made up just so many games that we played with him, things that enhanced his sound recognition, or touch, or anything.
I made a quilt out of a whole bunch of different fabrics that he could sit on. And every time he turned over, he would feel something different. It had velvet, and AstroTurf, and terrycloth. And I could go on for about an hour with all of the little stimulation games that we developed for him.
I like the one where you filled the bathtub with Jell-o.
Yes.
And made Jell-o.
The Jell-o, that was a seminal moment in our lives, absolutely. I took a huge roasting pan, and I made 48 boxes of red Jell-o. And took off all his clothes. He was six months old at that point. I took off all of the clothes, and lowered him into this sea of Jell-o.
And it was so remarkable because his eyes opened up, and then his fingers poked into it, and then it got all over him, and in his hair, and up his nose. And he absolutely loved it. He loved it. And it was stimulating on so many different levels. He could taste it. He could feel it. He could squish around in it. So we did that several times, and it was just-- it was something that he just loved to do.
By the time Jason was born, you had already been working on Sesame Street for a few years. Tell us how you first got involved with Sesame Street.
I had been working on other kinds of shows before Sesame Street. I worked on several game shows. I worked on a couple of specials, The Diary of Anne Frank, and John Gielgud, and all kinds of things. And the game show that I was working on when Sesame came on the air got canceled.
And so I was out of work and watching television every day. And this brand new children's show came on, which had a lot of publicity, and a lot of stress. And I simply fell in love. I said, that's where I need to be.
And I spent the next year pestering them, and going-- knocking on their door, and insisting that they hire me in some capacity, whatever. I interviewed in production. I interviewed in editing. I interviewed in research. I interviewed in every department they had, except writing.
I had never done any writing before, ever. But I was watching the show twice a day for almost a year. And they were opening a writers' workshop because writing this stuff is so difficult. And they couldn't find writers. So I offered to audition as a writer. And it turned out that because I'd been watching it every day, twice a day, for nine months, I knew how to do it. I had learned it.
I learned the format. I learned the way the characters talked, and interacted, and so on. So I got hired as a writer. That's the first writing I'd ever done in my life. And it worked out. 45 years later, I was still there.
It certainly worked out. And I didn't know that about you, that that was your first writing assignment.
Absolutely.
Very interesting. So tell us how having Jason changed your view about including people with disabilities, particularly in TV entertainment and movies.
Well, I remember so vividly the experience, when he was just born, of never seeing anybody on television who looked like us, nobody who reflected our experience at all. Everybody was so damn perfect. Everybody was so beautiful.
And you never saw anybody-- it's sort of like what African-Americans must have felt in the days when they were never represented on television either. And how remarkable, how revolutionary when commercials or programming started including people, and people had the experience of seeing themselves represented.
And I experienced that in a very visceral way. And I got very angry at watching television, seeing people, after people, after people and never seeing anybody with any kind of disability whatsoever. Forget Down syndrome, but anything-- in those days, there wasn't a wheelchair, there wasn't anything.
So it was about three-- well, then I got involved with The Little Theater of the Deaf. And they were absolutely wonderful. And I wrote all their stuff in the early years. This is when Jason was just a baby. So I got friendly with the people in The Little Theater of the Deaf. And I became politicized about some of the disability issues, of never, never seeing yourself represented on television.
So then at three, Jason started to read. It was crazy. He was doing these things that people had said he would never be capable of doing. And he was starting to do all these. And I went to the producers of the show, and I said, look, I got a kid with Down syndrome. He's three years old, and he's starting to put letters together, and make words, and he's starting to actually read little words. Can we put him on the show?
And they said, great idea, that would be fun. And we put him on the show, doing these little words-- J-Jason, D-dog, S-shoe, just charming little segments with him. And he was so cute, the little three-year-old. And then S-I-T-- sit. And L-O-V-E-- love, he was spelling out on the show.
And the mail that started coming in was absolutely phenomenal. The mail-- the grateful letters that we started getting from parents all over the place, saying, I never-- number one, I never saw a kid like mine on TV. Thank you so much for putting this child on. And then secondly, saying, I never knew a kid like this could do this kind of curriculum, do these academic things. I'm going to work harder with my child. I'm going to-- it was just fantastic.
And that's what triggered me. That's what started my whole career about the dedication to including as many kinds of disabilities as I could.
For me, it was a remarkable opportunity in the early morning, when Jonathan would wake up. And Jason's appearance on Sesame Street happened about the same time that my son with Down syndrome was born. And the only place that I glimpsed a person with Down syndrome outside of the one that was in my house, was getting up early in the morning to watch Sesame Street by myself.
And there was a scene where Jason's running across the screen. And I would wait every morning to catch that glimpse, only to be disappointed that it was only run about three times a week. So it changed my life, years before we got to meet.
So continuing a little bit on that theme, Jason's appearance-- beyond his appearance, you helped write other scripts that featured a range of people with physical, intellectual, and developmental disabilities. How did you approach these scripts? And what were the important messages you were trying to share?
When I was working so hard at including people with disabilities on the show, I had two goals in mind. Number one was to show what people with disabilities could do. That, for example, when I wrote stuff for Linda Bove, who was deaf, and wrote episodes about, how do it's time to wake up if you can't hear your alarm clock? How do there's somebody at the door if you can hear your doorbell?
I mean, really academic stuff, teaching the kids in the audience real, solid information about disabilities, people, how they accommodate their disabilities, how they work around things or meet the challenges that they meet in life, which was very fascinating. And people started learning the sign language word of the day and that sort of thing.
And it became a kind of a valued skill to be able to say certain things in sign. And explaining how people in wheelchairs, or people with crutches, or people with ailments, or whatever it is, how they encountered the world and accommodated to their disability. That was one goal.
The second goal was simply to put them in the neighborhood, to just be there. Not even doing anything in particular, but just playing with the other kids, or sitting in Hooper's store, having a soda or something like that, but showing them as valued members of the community. Because these kids were not being shunted away anymore. They were being raised in schools, in families, in communities. And getting kids everywhere accustomed to just having them there like everybody else was the second goal that I had.
So I kept dealing with the casting people at Sesame Street, saying, please be on the lookout for opportunities to just put a kid with a disability in with all the other kids as often as you can, just so they can be seen as regular, ordinary members of the community.
Well, you succeeded. And Sesame Street certainly has paved the way for what we now see as regular representation on TV, not that we've completed everything that we need to do.
There's much to do. There's still much to do.
But you started this revolution. People may not know that in addition to your amazing TV career, that you've written a number of books and essays. And probably the most famous and well-known is what I mentioned earlier, which is Welcome to Holland. For our listeners who haven't read it, it's a powerful, powerful piece about-- about a parent finding out their child has a disability. Tell me what inspired you to write Welcome to Holland. I have paraphrased it so many times to people when I don't have the copy in front of me.
I'm not sure what inspired it. I happened to be sitting on the bedside of a mom who had just had a new baby with Down syndrome. And we did a lot of counseling in those days to try to help families not have the early experience that we did. and help them through the early days, and tell them what it was going to be like, and what to expect, and so on.
And I was sitting on this bedside and just chatting with this mom. And I found myself saying this parable, or whatever, about Holland, and Italy, and so on. And when I got home, I said, gee, that wasn't half bad. That was pretty good. So I wrote it down.
And then around that time, I was writing the movie Kids Like These. And I used it as the final scene in that movie. And then it just sort of took off. I don't know, it's been around the world. And it's just-- it's incredible. It just blows my mind how it's been taken up.
I actually know about six children who have been named Holland as a tribute to that. And it's just-- it's extraordinary. And it's very flattering and very, very gratifying to think that it's helped as many people as it has.
There were some people who took issue with it. There was some people, years later, when autism exploded, and we hadn't thought much about autism until that point. And the autism community, some people were angry with Welcome to Holland because they said I didn't make it miserable enough.
Because a lot of people in the autism community were having the experience of not finding much to be joyful about, or to appreciate, and having much more serious challenges than I, or people like me had experienced. But listen, I'm sorry. Give me a break. I did the best I could.
And I was experiencing-- I was writing about the experience that I had had and so many other people I knew. I'm sorry if I didn't satisfy everybody's needs. But it has gone-- it's gone around the world, and it's helped a whole lot of people. And I'm very grateful for that.
Actually, there are several syndicated columnists, who on a yearly basis would reprint that Welcome to Holland essay. So while it was written decades ago, it's fresh.
1987-- 1987 is when I wrote it. It was reprinted once a year in Dear Abby. It's been in all kinds of books, and pamphlets, and handouts. And there have been get-togethers where people used it as a theme, where you would come into the meeting and everything was decorated sort of like Italy, with wine bottles, and red and white checked tablecloths. And then when you came out of the meeting, everything had been changed over to blue and white Delft, with wooden shoes, and tulips, and stuff.
People have been very imaginative about it. And there are zillions of aprons, and t-shirts, and stuff like that. It's wonderful. It's just wonderful.
You've said in interviews that Jason's progress may have set unreasonable expectations for other parents whose children didn't necessarily have the same kind of progress. What's your message to those parents who might be feeling frustrated?
It's so important. And it came to me sort of like a bolt. Because I was so proud of Jason. And he was doing some really pretty extraordinary things. And we loved taking him to meetings of doctors, and nurses, and educators, and so on, and showing all these things, these remarkable things that he was able to do.
We played so many wonderful educational games. And he had some pretty extraordinary talents. He loved to learn other languages. And when he was seven years old, he was counting to 10 in 12 different languages. It was crazy. And obviously, we were very proud of him and so on.
And then it hit me all of a sudden that wait a minute, this is not a yardstick. This is not something that people need to emulate, or hope for, or work towards. The important message is that they told us he'd do nothing. And just by working with him, and stimulating him, and educating him, and giving him opportunities, look at how much he was able to accomplish.
The point is that every child has the right to accomplish whatever he or she is able to. That is more important than counting to 10 in 12 languages. The important thing is to do-- to encourage your child to do whatever that child is able to do. And if at the end of the game, the child is able to learn to tie his shoes, that is fabulous. That is wonderful. And it is better than if the child had never been encouraged to learn to tie his shoes because of his label or whatever people thought his capability was.
The point is that every child has a right to develop whatever is in that child. If it's reading, fine. If it's not reading, that's also fine. Whatever that child is able to do, that's what you encourage, and that's what you help to accomplish. That's what's important.
And I had to realize, and I had to start telling people, Jason is not a yardstick against which to compare your child. Jason is not a role model to set for the development of any particular child. What you want to do is develop what's in your child's potential.
I think that's an important message. And I think that for those who might not understand it, there's the concept of the time. You and I had children at a time when people were saying they couldn't do anything. There were limitations that were being set. And in our zealousness to prove everybody wrong, by highlighting the extraordinary accomplishments of those folks who are able to accomplish great things, we inadvertently sent a message to other people, which we have done a great job in correcting.
And you just did that beautifully, is that it isn't a competition. There are no yardsticks. But there also should not be limitations put on anybody in terms of what they're able to accomplish. And I think we're continuing to do that.
Which in wrapping up, I'd like you to reflect on your years of advocating for inclusion. And what are the biggest victories? And what do we still have left to do?
Oh, there's still so much to do. There are still-- certainly, we know in our country and in our culture, there are still so many preconceived notions, and bigotry, and prejudice, and first impressions, and stuff like that. I think a great deal of progress has been made in special education and in inclusion, but there's still so much left to do.
And Jonathan has had the experience of living in the community. Jason is now living in a small group home in the community. And he's very well accepted by his neighbors and so on. And it's been a great triumph. But I don't think that that's the case everywhere.
And I think a lot of first impressions send people in strange directions. And we just have to keep working at it. And keep sending the message out that every person is an individual. And every person has a right to be whoever he or she is and live the best life that they can live. Everybody has something to contribute.
What can I say? Jason and his roommates, they once called me up. They wanted my help in baking a cake. And I said, you guys are all on diets, what are you talking about baking a cake? And they said, no, it's not for us, it's for the new neighbors who just moved in across the street.
So that's sort of what it's all about. And they were part of the community. They contributed. They proudly carried this cake across the street and delivered it to the new neighbors. And that's what it should be all about.
That's inclusion. That's inclusion. Sadly, though, even right there in New York-- I know you're in New York, and New York City has a very segregated educational system for children with disabilities. And we-- so we know there's a lot of work that needs to get done so that everybody has a great start in life.
And what you've accomplished, and not only with Jason, but obviously through your work as a writer, through your personal experiences-- I know the thousands of workshops and keynote speeches that you have given that have set the course right for so many people, I want to thank you, again. And Emily, you are just an extraordinary part of my journey.
If you want to learn more about Emily and Jason, we'll have a link to her website on our show notes. And we'll also have a link to her essay Welcome to Holland.
We want to thank Peabody TV for providing our wonderful recording space. And All Things Disability is made possible through the financial support of the Changing Lives Fund, which was created through a gift from Steven Rosenthal. To learn more about the Northeast Arc and to find past episodes of this podcast, please visit NE-ARC.org.
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