Somewhere, somehow somebody
Must have kicked you around some…
…Everybody’s had to fight to be free
You see you don’t have to live like a refugee
—Tom Petty and Michael W. Campbell, “Refugee”
Sometimes I go looking for books. A friend might say, “Oh, you really should read The Improbability of Love,” and I’ll track it down at the library and find out there are rows of reserve requests seven deep. I’ll decide to use my gift card to the big bookstore, combine it with the 20 per cent discount that landed in my email inbox, and I’ll have that book in my hand–and on my shelf–within four days. I’ll savor and enjoy the reading, and the enjoyment will be enhanced by a kind of treasure hunt–what in this book spoke so clearly to Susan? Where does our appreciation overlap?
I search that book out; I make sure it is there to be read. Very seldom am I disappointed to have invited it in.
And sometimes, I swear, books come looking for me.
That was the case with Dr. Mary Pipher’s The Middle of Nowhere, in which she chronicles her work with refugee families in Lincoln, Nebraska. I kept seeing it at libraries and bookstores; it just kept turning up. The book finally found its way into my basket from a clearance shelf. It came home with me and waited, patiently demanding to be read. I danced around it, and then, when I finally caved in and opened it, I was enriched.
Pipher shares the tales of several refugee families, and she says those families have a great deal to teach those of us blessed with citizenship from birth. Refugees turn pain into meaning; they give, says Pipher, meaning to their trials, reasons for the stories of their lives to be shared. Refugees demonstrate growth and redemption.
“Viktor Frankl wrote that while he was in a concentration camp,” Pipher said, “he discovered that everything could be taken from a person but one thing: the ability to choose one’s attitude in any given set of circumstances.” ( http://apa.org/monitor/dec01/refugees.aspx)
“What helps them recover, she found, is family, community and personal characteristics such as flexibility, sense of humor, hope, resiliency, and the ability to find new people to love and attach to.” (apa.org)
And, Dr. Pipher notes emphatically, the refugees do much better when the community welcomes them.
I enjoyed The Middle of Nowhere, and I thought about its message of outreach and welcome, and I put it on my shelf to return to later. And then I plunged in to other reading, and I didn’t think about Pipher’s book until another book found me.
This book was Steve Silberman’s Neurotribes, and it was recommended, strongly, by a couple of bloggers I highly respect on WordPress. That same week, a colleague forwarded me a video of Silberman talking about autism. So, when an Amazon gift card came my way within days of the recommendation, I used it to order Neurotribes, and I read it with fascination. Silberman tells the story of autism, from its first identification in the pre-World War II years to our current understanding of the condition. Silberman reveals the personal agendas and quests for glory that undermined a real understanding of autism for many years; he highlights autistic heroes and heroic supporters.
And he talks about Dr. Temple Grandin, a genius with the diagnosis of Asperger’s–and he writes about her remarkable ability to tell her story to a wide range of people, to explain how her mind works and how it feels to live in a world that rewards a whole different kind of thinking. Grandin felt, she said, like an anthropologist from Mars, living in a whole different world.
Her story fascinated Dr. Oliver Sacks, a professor of neurology and a gifted writer. He made it a point to meet Grandin; and when he came to know her, he was determined to tell her story. He wanted to explain why this brilliant woman who happened to have Aspergers syndrome felt like a refugee in her own land.
His resultant book, An Anthropologist on Mars, is next up on my reading stack.
I thought about this today when I went to a People First meeting with Jim. We have recently had the great good luck to meet a dedicated group of visionaries who are changing the way adults with disabilities are perceived and treated in our community. One of the many things they are doing, in their ‘person-centered’ philosophy, is helping disabled adults advocate for themselves.
Self-advocacy is the goal and the reason for being of People First (http://www.peoplefirst.org/). There’s a new but thriving chapter in this town; its officers attended their first conference this year. For some, it was the first time, at age twenty or thirty or forty or even beyond, they’d stayed in a hotel; it was the first time they spoke in front of a group of people who sat and listened and asked questions. It was the first time their words were received with applause.
They came back energized and wanting to do more.
So they have decided, with their mentors, to create a skit that they can take on the road. They want to go to K-12 schools and service organizations and colleges; they want to talk to anyone who’s open to helping society change the way it regards and treats adults with disabilities.
And because Jim, who is diagnosed with Asperger’s/PDD-NOS, enjoys writing scripts, one of People First’s guiding lights, Missy, asked him to attend today’s meeting.
The meeting convened at the disabilities services annex, in a large bright room where twenty or so adults sat at round tables. They were a mixed and welcoming group–they represented a wide range of ages, and they had a wide range of communicative ability.
They all introduced themselves and they all told us we were welcome. And then Sandy, the facilitator, pulled them into a discussion. The group decided, once they watched a couple of YouTube videos and understood where they were headed with the skit creation, that they wanted to address the issue of bullying.
Sandy led them in a discussion of bullying words–words they hate to hear, and better words that could be put forth to replace them. She drew examples from the people assembled, who offered up things like this:
I don’t like it when people tell me I’m fat. (Lots of nods at this, mostly from the female participants.)
I don’t like the R word. (Animated discussion followed this. It was agreed that using the word “retard” was just mean and ignorant, and people need to stop doing it.)
All of the group had heard these words. Let’s replace them, they suggested, with special. Unique. Nice. Friendly.
Then, “I don’t like it,” said one young woman, “when someone tells me, ‘Oh, you can’t speak French!'” There was a swivel of heads. There were looks of surprise.
And there was an instant reaction of kindness. “Yeah,” said Jeannette. “It’s bad when people say things like that.”
Sandy wrote, “People say you can’t speak French” on the smart board. She told a short story about a cousin who’d always taunted her by speaking French; she knew Sandy didn’t understand. The discussion went on.
List compiled, Sandy and the other leaders directed the group to a discussion of a scenario. There were plenty of ideas; there was discussion and feedback, and the group created a real and concrete picture. One of us, they said, is at the beach. That person is building a sandcastle and having fun. And then a stranger comes over and decides to wreck it. That person lays right on top of the sandcastle, and flattens it. And–that person says bad things.
Jim and I left a little later; Missy is going to send him details and he is going to create his first script for live theater. He’s pretty excited about the opportunity.
And he was pretty moved by the meeting and the topics and the stories he heard.
“How,” he asked, “could anyone abuse or bully people as kind and innocent as that?”
And yet he knows it happens. He’s had it happen to him–he’s heard the R word used to describe him because he’s different. He’s been ignored or taunted, too.
Jim, like other adults with disabilities, often finds the rules and the reasons of our society random and unfathomable. But, like Pipher’s refugees, people with disabilities choose their attitudes. They’re kind, for the most part, and they’re trusting. And they believe in their own abilities to contribute. This skit, they think, might make a difference, might touch one heart or teach one person a little bit about how bullying hurts the victim and the bully.
It’s apt, I think, the comparison of adults with disabilities to geographic refugees–two groups living in societies with codes and cues and secret handshakes they may never ever learn. But each has the tools to survive and to thrive anyway. Many have family support; those that don’t tend to create families to take that place. They take the slings and arrows life shoots at them, and they fend them off with humor and openness. If I had to characterize, in just one word, the feeling in that room today when the People First members were planning their skit, I’d choose the word hope.
Those folks, the adults with disabilities and the professionals who work with them, see the possibility of a bright and open future. They see a time when job opportunities are different and people in general are more accepting and nobody yells at them because they aren’t fluent in the language.
And they have the tools and the support to actively work for the change. I thought about Pipher’s list of things needed for refugees to successfully transition into the new society: Family. Community. Flexibility and sense of humor. The ability to find new people to attach to. Those attributes were all there, in operation, in that room.
It was an exciting privilege to watch the group at work. I don’t know if they’re Tom Petty fans, but they’re living his lyrics. Sure somebody, somewhere, has kicked them around some. But they’ve chosen to pave a new road; they’re a living demonstration that no one has to live like a refugee.