Inside Old St. Mary’s, photograph by Kevin G. McGlynn
This was published today in Huffington Post. The photograph tells the story.
Ariela loved music. She took almost every music appreciation class City College had to offer — Jazz, Latin, American Folk, Traditional African, Black Tradition in American Dance, Classical and Opera. From years of listening to books on tape, she had developed an incredible auditory memory. After hearing a piece once, she could identify title, composer, and genre. Class assignments often included attending and critiquing live concerts. That’s when she searched and found Noontime Concerts. Continue reading
Gary handed me a CUC (Cuban Convertible Peso used by tourists) and motioned to the boy on the sidewalk. Candy bars were arrayed on his wheelchair tray table. He could have been fourteen or fifteen. I wondered why he wasn’t in school, and how he managed to get to that spot on the pavement.
I asked our tour guides about children with disabilities. “They go to special schools,” he said. He didn’t need to add “segregated.” I knew what he meant.
Cuba is committed to education for all, but with a strained economy it’s hard to imagine hi-tech equipment in classrooms, especially in the special schools. Until 2008, Cubans were barred from buying their own computers. The latest statistic I could find was from 2011. At that time, there were only 783,000 PCs in the entire country, and 50% of those were government owned. Everyone must share the limited resources. People who need hi-tech speech generating devices, the kind Ariela used to communicate, probably go without.
The boy selling candy bars was a rarity on the street. In my 7 days in Cuba, I saw only two other people in wheelchairs. There are no curb cuts and many of the sidewalks and streets are pockmarked and full of broken pavement.
Because of Ariela, I am forever conscious of stairs and other barriers to people who use chairs. Aside from our Spanish owned hotel with ramps in the middle of the lobby, there were steps everywhere, with no evidence of alternatives, much like the U.S. before the Americans with Disabilities Act became effective. Our Cuban tour guide seemed reluctant to answer my questions, but he finally acknowledged that the reason I saw so few people with physical disabilities on the streets was because they had little means to get out and get around.
In Santiago de Cuba, I saw a man in a wheelchair rolling down a busy street. Without curb cuts it was impossible for him to get up on the sidewalk. I approached the man to ask if he wanted help. Before he could respond, two burly guys emerged from a nearby crowd and waved me off. They had been watching out for him. There would be help when he needed it. That’s when I saw the true nature of the Cuban people.
On Sunday night, Broadway will hand out Tony Awards. The Curious Incident of the Dog in the Night-time is nominated for best play. Gary and I saw it on our recent visit to New York. During the first act, I shifted nervously in my seat. The play had scenes that were painfully familiar. At intermission, I looked at Gary. “Should we leave now?”
We decided to stay. A lot can happen in the second act.
There were a lot of truths in the portrayal of Christopher, a teenage boy with autistic behaviors who tries to solve a murder mystery. Although my daughter, Ariela, did not have autism, we had a lot in common with the family in the play. Without giving too much away, here are just a few of the play’s insights.
- Motivation.With great difficulty, Christopher navigated trains and subways. He desperately wanted to find his mother. Ariela had just started to use a new communication device, a complicated system that required patience and practice. She wanted to be her own advocate. When her doctor told her she needed surgery, she used her device to tell him she was afraid. Then, when she was in pre-op with the IV inserted in her arm, she looked up at her surgeon. “This isn’t going to be easy,” she said with her synthesized voice. She wanted him to know that.
- Teachers.One teacher can change a life. Christopher was fortunate to have one gifted teacher in his corner. Ariela had many teachers who misunderstood her, dismissed her or neglected her. In all of her years of school, from pre-K through grade 12, I can count on one hand the teachers who supported her, believed in her, and nourished her. They were the ones who wouldn’t stop until they could find a way for her to learn.
- Animals.Sometimes it’s easier to connect with a pet than with another person. Christopher had a pet mouse. Ariela connected with horses. She loved to ride. Two therapeutic riding programs in our area wouldn’t take her. “She’s too medically fragile,” they said. But Joell Dunlap at Square Peg Foundation accepted Ariela without condition.
- Fighting. Parents of children with disabilities have a lot to fight about. When there are no roadmaps, there are no right answers. Like Christopher’s parents, some of our biggest fights were about who did what and how much for our daughter. Those were hurtful battles. It took us years to begin to acknowledge that we both did the best we could do.
- Controls.We all have our own ways to control the overwhelming stimuli in our environment. Some meditate, some medicate, some move to the country. Ariela closed her eyes and put her head down. Christopher turned to mathematics. I believe the last time I studied the Pythagorean Theorem was in the ninth grade. In The Curious Incident of the Dog in the Night-time, I saw its beauty through Christopher’s eyes.
There’s a lot more packed into this two-hour production, but I don’t want to spoil it for you. I just read that The Curious Incident of the Dog in the Night-time will be on tour next year. I hope it comes to a theater near you. Go see it for yourself, and don’t leave at intermission. It gets better.
The artist who sketched my portrait was so fast that I didn’t know I was a subject. We had stopped to gaze at some of the rehabilitated buildings in Plaza Vieja, Old Havana, where they stand waiting for tourists to appreciate their splendorous arcades and sunshine color palette. (Old Havana is a UNESCO World Heritage Site.)
Gary paid the artist and handed me my portrait. “Looks just like you,” Gary said.
“He gave me big boobs and took away part of my brain. Is that the trade-off?” I compared my caricature to the fine lines and love note on Gary’s picture.
The artists don’t ask. They just sketch and then hand you your likeness assuming you will pay.
The Cuban government pays all workers at the same rate — engineers, construction workers, and bus drivers all make the equivalent of $20 per month. With food ration cards and free health care, this may be just enough to get by, but not enough to live well. Cubans who work catering to tourists in hotels or in restaurants or with their 1950’s era cars they use as taxis can make more.
In Havana, all of our taxi cab drivers were engineers. Education, at all levels, is free in Cuba, but there are few engineering jobs. And, as one driver told us, “I can make more money driving than working as an engineer.”
“You’re an entrepreneur,” said someone in our tour group.
The cab driver looked over his shoulder. “What’s an entrepreneur?”