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Meet Emily Perl Kingsley, a Pioneer who Paved the Way for Inclusivity
Emily and Jason
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Jason
Jason with his dad Charles
When Emily Perl Kingsley’s son, Jason, was born forty-six years ago, she made a promise to help him live life to the fullest. Along the way, she changed how the world views people with disabilities. Emily shares with our readers the challenges she faced as a specialneeds parent in the mid-1970s, how her role as a writer on Sesame Street helped open the world of disability to others, the ways in which early intervention and parent support groups helped improve the lives of generations of children with special needs, and the story behind her well-known essay Welcome to Holland.
When Emily Kingsley arrived at the hospital in the first stages of labour, she was as prepared as any firsttime mother could be to welcome her “perfect” child. After an eighteen-hour labour, her baby boy, Jason, was born at 11.00 p.m. After the delivery, Emily fell asleep, exhausted, without having spent any time with Jason. The next morning, Emily’s husband, Charles, met with the obstetrician. The doctor explained that tests had indicated that their new son was born with Down syndrome. This meant, he said, that the child would be “permanently, severely mentally retarded.” The doctor’s recommendation, common at that time, was that Emily and Charles should never see their baby, never get to know him and send him, immediately, to a state institution for the rest of his life. “You will never have to know if he is alive or dead,” the doctor advised. “Just go home and tell your friends and family that the baby died in childbirth.” The Kingsleys had never considered the possibility that their child might be born with special needs. “Jason’s diagnosis came as a 100 per cent shock,” Emily recalls. “We had not chosen to have an amniocentesis, as there were reported risks associated with the procedure in its early stages. I had spent no time preparing to be the mother of a child with Down syndrome,” Emily says. “I was expecting to have a regular, ordinary child, just like everyone else.” In Emily’s heart, she knew that she and Charles would never relinquish the care of their son to an institution. “I had majored in psychology in college, but I had only ever had one field trip to a place called Letchworth Village, a huge, horrible, depressing state institution. And oh, my goodness, I knew that I could never accept that life for our child,” Emily shared. Although they were terrified, with the doctor’s prediction ringing in their ears, she and Charles were willing to try and see what would happen if they raised Jason in their home.
Starting at Less Than Zero Emily and Charles were lost, nervous, with nothing to go on. The hospital offered little support of any kind for the parents of a child born with Down syndrome. “Not a paper, not a brochure, nothing to point the way,” as Emily remembers. “We knew that we were truly on our own.” On the third day of Emily’s hospital stay, a social worker suggested that there was something very new, very experimental, called early intervention. Some people believed that if you gave a child a very enriched environment, lots of stimulation and education, he might develop some fundamental life skills. Maybe he could be taught to feed himself. Did the Kingsleys want to give it a try? They decided they did. Emily and Charles found an early intervention programme headed by Dr Margaret Giannini and took Jason there when he was ten days old. Dr Giannini took Jason in her arms, held him up high in the air, and declared, “He is going to be fabulous!” How could that be? But Dr Giannini’s enthusiasm inspired Emily and Charles to nervously make the tentative decision to give the programme a try and see what might be accomplished.
Creating Jason’s Home Workshop: Film Canisters and Red Jell-O
Dr Giannini encouraged Emily and Charles to surround Jason with all sorts of stimulation. “Down came all the gentle-coloured nursery decorations, the pastel crib sheets and the peaceful pictures and the soothing mobiles of lambs and bunnies,” Emily recalls. Up went the bright, flowered wallpaper with red, blue, green, and yellow oversized blossoms. Emily filled Jason’s room with colour, texture, three mobiles, and nonstop music. Emily talked with Jason every day, on and on, about the big, beautiful red flowers on the wallpaper next to his changing table. “Then one day, about four months later, I said, ‘Look at the big red flower!’ And Jason looked at me very intently and stuck his hand right onto the red flower on the wallpaper. And boom! I knew that he understood what I was saying! He made the connection… he could learn!” Emily said.
Over time, the Kingsley’s home repertoire of sensory toys and techniques grew exponentially. “We tried it all — the film canisters filled with pennies and jingle bells for Jason to rattle and shake, the huge blocks of foam sculpted into all sizes and shapes for him to climb onto, the tunnels and tents to encourage him to crawl inside and search for hidden treasures,” Emily says. As she watched Jason engage with all of these things, Emily’s enthusiasm and creativity blossomed. “It was apparent to me that Jason was bright and that he loved to learn,” she says. “So I was excited to provide those new experiences for him every day.”
Finding Friends: Establishing a Parent Support Group One day, as she looked through the local Pennysaver newspaper, Emily noticed an ad. “‘Parents of kids with Down syndrome children meet at Prudential Bank on the first Monday of the month,’ it said. ‘There are others!’ I yelled out to Charles. That was our first contact with other parents. We thought we were the only ones on the planet. And this was the beginning of the concept of parent support groups,” Emily says. “We moms got ourselves together as a group and made a lovely brochure, including all of the information that was available at the time about Down syndrome — all the things we wished we had been told when we had given birth,” Emily says. “We hand-delivered that brochure to the maternity department of every hospital in the area so that no other parent would feel as alone and helpless as we had.” The brochure included contact details so that new families could talk directly to the Kingsleys and other families to get real-life information and to know that they were part of a caring community. The group got to know every new family as their babies were born, and a wonderful community of support and friendship grew. Friendships developed not only among the parents but among the children too. “Once our children became teenagers, we came to realise that “inclusion” might be happening in the classroom, but it wasn’t necessarily extending beyond the classroom walls,” Emily points out. “We started to see that our children weren’t being included in the soccer games or invited to the birthday parties or the sleepovers. So we set about creating our own parties, once a month, to give our kids the same opportunities to socialise and have fun.” Their gatherings had such a lasting impact that today, Jason, at forty-six years old, shares a home with two of his friends from that original group. “They’ve known each other nearly their whole lives,” Emily says, “so they are extraordinarily close.” In fact, Jason and his roommates refer to one another as “a family”.
Making Their Way to Sesame Street: Showcasing Inclusion
Even at a very young age, Jason loved looking at and listening to books. He showed great interest in letters and sounds and in learning the alphabet. He loved playing with Scrabble tiles. By the time he was three, he was able to identify the letters, connect them with a letter sound and say a word starting with that letter. It was apparent he was going to be able to learn to read. “We started visiting medical schools, nursing schools, universities, to attack people’s preconceived notions about Down syndrome — to demonstrate that Jason was only three but was developing fundamental academic skills,” Emily remembers.
One day, Emily brought Jason to the Sesame Street studio, where she worked as a writer. “I took Jason over to the producers of Sesame Street and asked if we could feature him on the show to demonstrate that a little kid with Down syndrome could do academic material. They said, ‘Why not? Let’s try it.’ The response we got to Jason’s appearances on Sesame Street was just phenomenal! Families wrote and said, ‘I have a kid just like this! I’m going to work even harder to get him to read!’” Emily said. “We pointed out to the Sesame Street producers that a new generation of kids was no longer being hidden away, but they were growing up in families, in communities, in schools. They deserved to be seen.” In addition to Jason’s appearances on the show, Emily created scripts featuring people with many other disabilities, including those on crutches and with braces and in wheelchairs and those who were deaf. The feedback was terrific. “One of our most popular episodes featured ‘A Workout in a Chair,’ for kids who wanted to exercise in their wheelchairs,” 16 makingchromosomescount.co.uk
a day in the LIFE
Emily recalls. “We cast a child who had spina bifida, and we asked him, ‘Does it make you sad when you see other kids who are running around, and dancing?’ And he said, ‘Well, yeah, sometimes it does, but with my chair, I can do almost anything they can do.’ And that was one of our most-loved episodes.” Emily had an opportunity to write some segments for Christopher Reeve, a famous actor who had become paralysed as a result of a horseback riding accident. Among other things, Emily wanted to include Reeve’s son Will in the segment. Reeve resisted this idea but asked, “Why is it important to use Will in this bit?” Emily responded, “It’s important for our viewers to see that even people with extreme or significant disabilities have families who love them, really love them, and want to be out in the community with them.” Christopher called Emily the next day and agreed to have Will in the segment. In the completed episode, Will greets Christopher by jumping into his wheelchair with a big kiss, saying, “Hi, Dad!” and off they go with Big Bird and Zoe to the library. “It was a beautiful moment, demonstrating their beautiful ‘normal’ loving father-son relationship,” Emily says. “Towards the end of the episode, Big Bird says to Chris, ‘Are you sad that sometimes you can’t do the things you used to do?’ Christopher answers, ‘Well, since my accident, there are many things I can’t do. But with the help of my family (wink to Will) and friends, I can do lots and lots of wonderful things.’ And it was just so dear,” Emily recalls. Emily has earned twenty-three Daytime Emmy Awards for her work on Sesame Street and has authored over twenty children’s books. In addition to Emily’s groundbreaking work in her forty-five years with Sesame Street, she also wrote an award-winning madefor-television movie about a middle-aged couple who have a son with Down syndrome, Kids Like These, which premiered on CBS in 1987.
What’s Ahead for the Community Emily recognises that advances in prenatal technology have resulted in major decisions for parents as they contemplate their options. “Prenatal diagnosis is much more accurate and is done much earlier nowadays,” she says. “People have more opportunities to make informed choices. But as expectant parents, we can never know what the potential of any child might be. If I had listened to that first doctor and sent Jason away, he would never have had the opportunities to live in a loving family, go to school and develop whatever his potential turned out to be. Every child should have that right. Jason has written one book and is in the process of writing another. He has appeared on television. And he’s a really nice person. He’s probably made more of a contribution to the world than a lot of neurotypical children. I’m proud that he’s my son.” Emily does caution that prenatal testing has the potential for far-reaching implications.“I have heard that approximately 90 per cent of pregnancies diagnosed prenatally with Down syndrome are terminated. Tests are easy to come by, and results are almost instantaneous. Expectant parents may not be aware of what life with a child with Down syndrome actually is like, so they may be faced with making a decision in a bit of a vacuum. People making these important life decisions should be sure to do their homework, meet other families and see what children with Down syndrome are really like,” Emily says. “If a large number of babies diagnosed with Down syndrome are terminated, I worry about the reduction of funding and services available for the children that remain.” In taking stock of the changes in the Down syndrome community over the past five decades, Emily is at a place where she can take a longer perspective. “Jason has accomplished a great many wonderful things in his life,” Emily shares, “but the only important thing is that he had the opportunity to develop HIS potential. Not all children will develop to the same level, but each child has the right to develop to that child’s best potential. Down syndrome is a disability, but each child will do better if provided with stimulation, education, and love.”
Welcome To Holland
By Emily Perl Kingsley
©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this...... When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. “When I originally wrote Welcome to Holland, in 1987, I was counselling a woman who, like me, had a baby born with Down syndrome. I was trying to express that although the journey is different and there are challenges, there are positive aspects to the new place. But it was important to recognise that the pain of the loss of the dream would always be there. For the rest of your life, you will never lose the pain of the loss of the dream, the experience you had planned for — but you need to be available to the positive, rewarding aspects of the new experiences as well. “Years later, when the autism community was growing, they came across Welcome to Holland, and some people were very upset by it, as were some parents of children with Down syndrome. Many of them were not having a positive experience in parenting their children, and somehow the painful parts that are so essential to recognise were left out of some of the versions that were shared. Alternate versions started appearing on the internet, Welcome to Bangladesh and Holland Schmolland, for example. I certainly understand that the experiences of other parents of kids with special needs may have been different from mine with Jason. “But I am so gratified to know that Welcome to Holland has helped many, many families. That means the world to me.”
— Emily Perl Kingsley
