The change in one lifetime: attitudes toward children with disabilities

Amazing changes have occurred in my lifetime, changes in just about every aspect of daily life. When I was born, the minimum wage was $1 an hour. Our parents made us drink whole milk and eat liver because it was good for us. Smoking was considered chic, and cough medicine with codeine was available over the counter. We had no child car seats, and I don't think we had a car with a seatbelt until the early 1970s. Our family was like most - one black and white TV centrally located in the living room, which had to be shared by all family members. I could go on, but you get the idea.

I was recently reminded of just how different our society is another way - our attitude toward children with disabilities. I know something about this first hand. You see in 1958, my younger sister Joyce was born with hydrocephaly.
In those years before shunts were medically available to manage the excess cerebral spinal fluid, the parents were either (a) not told what might be wrong and the newborn was just sent home, or (b) told the child was hopelessly retarded (ah, terminology, another huge change in my lifetime) and should be institutionalized. That way, it was explained to the shocked parents, they could move on with life as if that child were never born.

If parents decided to raise the child at home as my parents did, God bless them, they got little or no support. Back then, many people believed that giving birth to a child with a disability was God's punishment for the parents' sins. There was no agency providing guidance or intervention, no child-sized adaptive equipment, no clinic or moms' groups giving support. My mom sewed together cloth diapers and rubber pants because incontinence care items for a child over preschool-age didn't exist. Even a basic right such as education was denied Joyce and others like her until the Education for All Handicapped Children Act (now known as Public Law 94-142) was passed in 1975.

Since Joyce didn't walk until she was 5 years old, we often brought her out into the community in an over-sized baby stroller. Yes, people stared and pointed and tsk-tsked, and adults pulled their children away as if Joyce had something contagious. And yes, all of that affected me, shaped me. I learned early on how to speak my mind, and for good or bad, I've been that way all my life.

But the point is this - in the last 50+ years, our society has learned how to accept children with disabilites and support them and their families with appropriate programs, therapies, and education. Not necessarily embrace them, mind you, but accept them for what they are, loving and love-worthy human beings endowed by their Creator with the same inalienable rights as everyone else.

This video is a prime example of that positive change. We're not yet where we need to be, but with every passing decade, we're getting closer.

If you love a child with a disability, give a prayer of thanks for folks like my parents, Joyce, and the generations who struggled and lived happy lives with the people they loved, regardless of what their doctors and their society said.

A respite from the chaos

During the last few weeks, I've been a bit frazzled. We have a brand-new beautiful grandson who, along with his parents and two sisters, has stolen our hearts and planted them three hours away. We've started renting a place closer to them and listed our home on the market. We're downsizing like crazy, cleaning out closets, cupboards, the garage, the shed and giving away what we no longer need. We place unwanted items out by the road where they're scooped up for free, sometimes before we even walk down the driveway. Oodles of books have ended up at the Tunkhannock Library. Clothing and household donations went to the Salvation Army or Interfaith Friends, as did many of the vinyl records I couldn't sell on eBay. It's a long, tedious process, this downsizing. Each day brings its chore list. I dutifully check off finished tasks, but I'll admit I don't take much satisfaction in it. There's always more to be done, and it leaves little time to write or even think about writing. 

In the midst of this, I gladly set aside chunks of time to plan, prepare, and thoroughly enjoy the Readers Meeting Writers program at Tunkhannock Middle School. I'm ever so glad I did.

Thanks to Erica Rogler, Margie Young, Hildy Morgan, Sara Ergott, and the good folks at the Wyoming Cultural Center at the Dietrich Theater, the debut of the three-week long program was well-received by students, faculty, and administration alike. 

But let's talk about those students! They were enthusiastic and engaged for all three two-hour after school sessions. They asked questions galore and offered opinions and ideas about topics ranging from bullying to being a hero. They spoke fondly of the story line and the characters in Risking Exposure, and voiced the same need for a sequel that I've heard from many other readers. All our activities, whether doing jumping jacks or making propaganda posters, were well-received. When asked how they thought the program might be improved for next year, they unanimously voted for more - more days, more chance to write their own work, more activities, more discussion, more, more, more! Wow. 

Such impressive young people. They treated one another with respect, listening, encouraging, waiting their turn with hands raised. There was none of the eye rolling and snide remarks often associated with kids that age. They showed sensitivity when discussing difficult topics, and remarkable insights into human nature's darkness and light. Those kids are a credit to their families, their school, and their community. They give me great hope for the future. 

I thank them for giving me those hours of respite in the midst of the endless chore lists and chaos of our upcoming move. I'll get back to work on the sequel soon, I promise.

The fun starts today!

For the next three Wednesdays, 26 Tunkhannock Area Middle School students will stay after school. No, they're not in detention, getting extra help, or participating in sports. They are the remarkable kids who have volunteered for a debut program: Readers Meeting Writers.

The Readers Meeting Writers program is the brainchild of Erica Rogler and Margie Young of the Wyoming County Cultural Center at the Dietrich Theater. For years, the Dietrich has sponsored a Wyoming County Reads program for adults, in which interested folks read and discuss a single title over the course of a few weeks. The program has been quite successful and they thought - why not create a similar program for teens?

That's where I come in. Last summer, Erica and Margie called me with a proposal: they'd like to launch a Wyoming County Reads type program for middle school and they'd like to use Risking Exposure as the assigned book. The perk for the students was that I was local, and so could share my experiences about the creative process too. I was blown away. Obviously, I accepted immediately.

In the months that followed, we met a number of times and recruited the needed help. Hildy Morgan joined us, as did Sara Ergott, a middle school Language Arts teacher. Sara acted as our liaison with the Tunkhannock Area School District administration, who gave us their full support. We created goals and schedules and plans, revised them, tweaked them. And we launched.

In late January, in front of 600 middle school students, teachers, and administrators, we presented the ideas behind Risking Exposure and the Readers Meeting Writers program. The response has been phenomenal.

So this afternoon, we begin. The students will have read the first four chapters of Risking Exposure for today's session. They'll receive a journal to document their thoughts. We'll discuss plot and character and theme, history and today's world. We'll look at how hard it is to stand alone, the power of propaganda, and who we call a hero. We'll talk, we'll get physical, we'll sing and laugh and create and write.
And we'll grow. All of us will benefit from our time together. Especially me.

Have we learned?

The American public was polled. Over half of us said we didn't need more immigrants, not with all the problems we already have here. Homelessness, joblessness, uncertain economy, rising taxes and costs of medical care. We especially didn't want those immigrants. Why they'd steal jobs from our own people, add a burden to the already struggling economy. We'd have to educate their kids with our kids, and if they lived near us, our kids might play together. They didn't speak our language or share our religion. We were sorry to hear about the craziness and brutality of their homeland, but their need to get away didn't mean our way of life had to be disrupted. After all, they weren't like us. Lord knows, we couldn't help everyone. So we Americans decided to help no one.

That was in 1939. The people in question were mostly Jews and political exiles fleeing Nazi Germany. Despite the astronomical rise in Germans and Austrians seeking asylum in America in the aftermath of Kristallnacht, we did not increase the number of Visas granted. We turned a blind eye during what is probably the most appalling reign of inhumanity in the 20th century, going so far as to physically turn away a shipload of mostly Jewish emigres. They were returned to Germany. Hundreds of them later died in concentration camps.

Of course, hindsight is 20-20. It's easy for us to sit here 75 years later and render judgement. We weren't there. We didn't share the struggles of Americans then. We didn't feel their fear at the potential danger of having Nazi spies mixed into the group. We didn't have these foreigners coming to our neighborhood with nothing but the clothes on their backs, competing with our people for jobs and food and housing.

But the parallel is unmistakable. Here we are in 2015, and again, people are fleeing oppression and violence. They're boarding inflatable boats and crossing a continent on foot to have a chance at a future. And again American polls reveal our attitude. We say, "I'm sorry to hear about your problems, but you can't come here. Some unsavory characters might sneak in."

How dare we call ourselves a Christian nation when we take a position so clearly lacking compassion and basic kindness. Completely un-Christian.

I'm proud of the stand taken by President Obama and Pennsylvania Governor Tom Wolf. They are sticking by the moral compass outlined for us by our forefathers. They're showing that we Americans have learned something in the last 75 years. Certainly we've learned that an Us vs Them mentality is outdated, and it's safe to say that Americans agree, we function as part of a global community. We all share the same air, the same sun, and yes, the same God, whatever we may call him. We get that. If only the majority of Americans were ready to put aside their fearful knee-jerk reactions and act on those beliefs.

In this generation, at this time and for all time, we Americans need to be firm in our commitment to be a beacon of the hope of freedom for people around the world, even when it makes us uncomfortable. If we aren't that beacon, who is?

An even bigger statement of who we are as Americans is this: if we turn our back on emigres out of fear, then the terrorists have won.

Character sketches from my (soon-to-be-released) picture ebook!

What's a good kids' story without great illustrations? Not nearly as much fun, I'd say.

 

These awesome characters will populate the picture ebook, Mikey and the Swamp Monster, which I hope to release by late October!

I'd written the story ages ago, and since retirement, pulled it out and tweaked it. With permission from my son Mike (whose childhood imaginings inspired the story), I'm getting the ebook ready to launch. 

For illustrations, I again called on the talent of the incredible Mike Rausch (a different Mike) to add visual life to my words. You may remember that Mike also created the acclaimed cover for my historical fiction novel Risking Exposure. 

Stay tuned!