A Theatrical Collage of Stories that Take a Break from Normal
"Just Like You" is a theatre performance of stories that take a break from normal, written by mothers of children with developmental disabilities through a partnership between Well Arts and Northwest Down Syndrome. The show ran January 10th - 18th, 2014 in Portland, OR.
Most people these days are used to being pulled a million different ways. We all have demands on our time, expectations we should be filling, fears that things may unravel, hope that we’ll find the right moments, the right loves, the right supports, the right place to be. These pressures and hopes, expectations and rebellions give a delicate balance to each life, and provide the platform for our own stories.
But when the baby in your arms is referred to by a doctor as a FLK (Funny Looking Kid) and then slapped with a diagnosis, such as autism or Down syndrome, that balance that must be struck becomes all the more fraught and all the more precious. And as the parent, it becomes your job to negotiate between the rest of the world and your child, as your child finds her place in the wider community.
About Well Arts
Well Arts is an innovative arts-in-healing nonprofit that uses theatre, writing, and other forms of creative expression to empower the voices of people with physical illness, mental illness, and social stigma. We provide trained, professional theatre directors and playwrights to facilitate playwriting and oral history theatre workshops for people experiencing a particular illness and stigma. Once auditioned, actors perform these stories written by the workshop participants in staged readings for the general community, which can empower participants with the knowledge that their story does matter. Healing does not always happen with a pill, sometimes the best medicine is to support each other and listen with open hearts and minds. This year, Well Arts is partnering with the National Alliance on Mental Illness, Northwest Down Syndrome Association, the National MS Society: Oregon, the Urban League of Portland, the Portland Chapter of the Delta Sigma Theta Alum Society, Portland Vet Center and Boys and Girls Aid Society to help parents of children with disability, veterans, adults living with mental illness and MS, incarcerated teenage girls, and African American women tell their stories, to Portland, on stage.
Mothers Telling Stories: How creating plays can soothe a mother’s soul
by Katy Liljeholm
We’re sitting down at a table scattered with hastily scribbled stories, bottles of wine, cheese, figs, bread. My six students, all mothers of children with developmental disabilities, are sharing some of their choicest quotes told to them at IEP (individualized education plan) meetings. Abby, a compact red-head and inveterate traveler thinks back for a moment, takes a breath in, and shares her’s. "One of the teachers came up to me and said, 'It’s not like we blacklisted your daughter," Abby says, "and I said, 'Well, I wasn’t thinking about that but that’s good to know.'" I mull that over a little, thinking about this faceless teacher and wondering, 'Wouldn’t it only occur to you to say that if the matter was in doubt?'
At the heart of this story is a very simple question. Does our community, and do our busy lives, hold a place for people with developmental disabilities that keeps them within our circles, not in "specially" designated areas?
As a playwriting teacher for an arts in healing organization named Well Arts, I’ve worked with human beings who are all over the map in terms of illness, disability, stigma, education, assumptions, income, and relationships. I teach people how to write their personal stories for theatre, then Well Arts auditions, casts, and rehearses professional actors who perform the stories written by my students onstage for public audiences. It’s a way of fostering healing through empathy, community, and creative empowerment. When I was approached to teach a two-month playwriting workshop for the Northwest Down Syndrome Association, my first thought was, "This is great! I know nothing about these people!" I had made friends with a boy with down syndrome in school, and worked with adults with developmental disabilities. I had known those people to be incredibly mature, their emotional IQ soaring over the inevitable detractors and insults I saw them meet with in the world. So I looked forward to, in a sense, meeting their mothers.
Six mothers presented themselves dutifully on the first day in class hosted at Augustana Lutheran Church in the library. They ranged in age from (guessing here) their 30’s to maybe their early 60’s. Four of the mothers were caring for children with Down syndrome, two for children with other developmental disabilities. They were nervous, unsure what was going to happen, unsure if they wanted their stories out in the world. At the same time, they deeply needed some space and time for themselves, and a way to connect their experiences as mothers into a larger whole. That’s a perfect storm for good writing. Once a week for eight weeks, we started each class with some stretches and playing a theatre game, then we loaded our plates with snacks, poured red wine into my office mugs, and crowded around the table. Each day I did a little instruction on different writing tools and techniques and then we wrote for an hour. At the end we shared what we wrote with each other.
An explosive and careful dance began. These mothers were used to advocating, cajoling, battling, scraping together, patchworking a good education and a good life together for their children, using their strength, tenacity, patience, and intelligence to bend the community and wrap it around their child. Understandably, there was a lot of anger and frustration. One of the mothers, herself a nurse, wrote about a presentation on down syndrome she gave to an arena full of doctors:
"So, I speak some more, fueled by anger. I tell them that I, too, am an expert. I am an expert on my two diverse and beautiful sons. I am an expert on the fact that down syndrome does not preclude joy, love, frustration and the gamut of family experiences. I tell them it does bring judgment and prejudice and ask for help. I thank them for the surgeries that can heal our babies’ hearts. I curse them for signing so many into institutions in our so recent past. I thank them for the hearing aids and the glasses that we often need. I curse them for calling our children uneducable. I claim history and I claim a good future."
Abby told me that when her daughter had been born, a doctor had come in an said, "Well, I don’t think your daughter is a FLK but I want to run a few tests..." "FLK?" I asked. "Funny Looking Kid," Abby translated for me, "That’s what they call your baby when they think there’s something wrong but they don’t know what."
Does that seem a weird to you, too, to treat a baby and a mother like that?
Their advocacy danced with their heartache. In their advocacy, their experience is that their child’s differences forced their families to go through test after test, assessment after assessment, experts packing them away into special classrooms apart from their peers in school, and repelled by stares and sharp words in the world. Talking about differences, using the word "disability" dangerously incurs judgment and isolation. That creates heartache. Heartache, lived in isolation, is hard to soothe. They need each other, and they need an audience, and that’s the place within themselves that they wrote from.
One of the mothers, Susan, who battled cancer, has the neat appearance of a typically successful woman and the inner life of a rebellious and savvy writer, consummately eloquent and always questioning the system. She told me, "When my daughter was born, I thought, 'Well, we're not part of the rat race anymore.'" There’s a freedom that can come with that. But there’s an anxiety, too. Susan wrote:
“Maybe I’m no different than any helicopter parent. I’m always trying not to hover over my son, although last week I did allow my son to forget his pre-K homework, figuring he might as well learn the responsibility himself while the stakes are low. But I never would have done this for my daughter. Couldn’t have risked a slip like that.”
She couldn’t risk that slip, because mistakes are attributed to her daughter’s down syndrome, not to her daughter’s individuality. Mistakes are strikes counting against inclusion. When we first started this workshop, one of the mothers told me, "My anxiety is 10% my daughter’s disability, 90% how the rest of the world treats her." Think about it, for a moment. How many adults with developmental disabilities did you encounter in the world today? How many did you talk to? How many do your children talk to? As a parent, how can you comfortably picture the rest of your child’s life as a life that no one else sees, or appreciates, moving from special classroom to special home, a special life kept conveniently out of the way of people who move and think faster than your child.
In the class, their children came alive for me. Daniel, who creates music and animations. Adara, who loves to read, swims like a fish, and watches others carefully so that the first time she tries to do something, she does it perfectly. Chrstal, now a vibrant young woman, drives her mother nuts because she doesn’t call often enough to check in. Claire, who at the tender age of four loves playing boggle, never lets a sneeze go unblessed, and can dive to the bottom of the pool like an otter. Their lives are productive, they have every ability to positively impact the people around them. Alicia (a tall mother with Kathleen Turner’s vavoom and a Buddhist-like appreciation for the small and magical experiences of existence) wrote about her daughter,"She belongs in this world, our world. She belongs in every room her feet take her into." Their stories are beautiful. Sheyla, the rebel, wrote about the night her daughter was conceived, "So I never got to the beach with my compañeros. And sometime in that night your 21st chromosomes somehow stumbled in their dance and an extra piece, or perhaps a whole, was encircled by the newly closed cell wall and became part of you. The world was changing."
Disability. It’s an event feared by new parents. It can break apart marriages. But it can save them too. Alicia spoke to me about how her daughter grounds her marriage, because their deep love for their child forces them to be present and to let go of the extras. She wrote a scene in which a man and woman, thoroughly misaligned in both needs and communication, end with this:
“Light goes up on a child sitting on the floor laughing as the sound of cars whiz by. There is the sound of children laughing at the sound of rocks being dropped in a bucket. Man and woman walk into spotlight and look at child laughing and smile, reach out and touch child and look at each other and smile, circling arms around all three. Rock goes into a bucket and all laugh like crazy.”
What I see that saves everyone, is that love. That community that they build with each other, where it’s okay to bring stories of hope and pain, frustration, helplessness, wonder... where they define their normal not by learning objectives, but by the ultimately uncrushable spirits they and their children share. As Abby writes, to her own precious child:
"You, my sweet, have a gift for turning the "they" into "we" so as long as we continue to let you loose on the world, then yes, I have every confidence they will get it some day... You are free. Work your magic."
Like their children, these mothers are the playwrights of their lives, architects who are continuing to build community on the strength of their story.