Nothing is more normal than being different, says speaker

May 15, 2016


Sarah Woolworth, 21, of Phoenix says she has dreamed of becoming a teacher since she was 9 years old.

She never dreamed, however, that her very first experience as an educator would involve teaching a middle-school class about herself.

Photo credit: Barrow Neurological Institute
"Profoundly gifted"fifth graders at Madison No. 1 Middle School in Phoenix learn that people are not defined by their disabilities in a lesson led by Lori Takeuchi, left, program coordinator with the Cleft and Craniofacial Center at Barrow Neurological Institute in Phoenix, and Sarah Woolworth, second from left. Woolworth told the students about her emotional and medical journey growing up with a craniofacial disorder. The institute is part of Dignity Health's St. Joseph's Hospital and Medical Center.

That's exactly where she found herself a few months ago, though, when Rae Dewberry's fifth-grade language arts students invited her to speak at Madison No. 1 Middle School in Phoenix. The kids — part of the school's "reach"program for the highly gifted — had just finished reading aloud Wonder, by R.J. Palacio, a New York Times best-selling book about a fictitious boy named August Pullman.

Auggie's story is a poignant look at a 10-year-old who enters a public middle school, after being home-schooled all his life, and encounters more than his fair share of social problems at a stage when most kids just desperately want to fit in. "Fitting in"is hardly an option for Auggie, who has mandibulofacial dysostosis, or Treacher Collins syndrome, a craniofacial disorder in which some bones and tissues in the face — most often the cheekbones, jaws, chin and ears — are not developed. Symptoms include downward slanting eyes, a very small jaw and chin, hearing loss, vision loss and often a cleft palate. The genetic disorder is estimated to affect one in 50,000 people.

Woolworth, along with her mother and older sister, has the same syndrome. She's been a patient at Barrow Neurological Institute — part of Dignity Health's St. Joseph's Hospital and Medical Center in Phoenix — for most of her life. The Barrow Cleft and Craniofacial Center there treats patients from birth to adulthood, focusing on giving them the best possible outcomes, both physically and emotionally, for their medical conditions.

Making connections
Connecting Sarah Woolworth with Madison No. 1 Middle School was complete serendipity, according to all parties involved.

Woolworth, for her part, says she read Wonder a year ago. "I began it at 3 p.m. one day and finished it at 2 a.m. the next — I couldn't put it down,"she recalls.

She, in turn, shared the novel with a book club sponsored by Barrow. "Sarah fell in love with Wonder and wanted to tell other patients about it,"recalls Lori Takeuchi, program coordinator for Barrow Cleft and Craniofacial Center. "We believe in treating people spiritually as well as medically, encouraging them to socialize and be a part of the community, so we were delighted to support Sarah in this way."

Meanwhile, the mother of one of Dewberry's fifth-grade students works at St. Joseph's Hospital. When her son started sharing his feelings about Wonder at home, she decided to approach the Barrow Neurological Institute about the possibility of providing a speaker for the class.

Dewberry, for her part, was most enthusiastic about connecting her class with the Barrow institute, and, ultimately, Woolworth.

"I chose to read Wonder aloud because I thought it would resonate with the kids,"says Dewberry, who has been honored as "Gifted Teacher of the Year"in Arizona. "Profoundly gifted children often have disabilities themselves, from ADHD, autism spectrum disorders and Tourette's to anxiety problems and poor social skills. Bullying is an issue for them, too. And anything that can extend their learning to the real world is beneficial."

So Takeuchi and Dewberry collaborated on a mini-curriculum to introduce the children to craniofacial disorders, and, ultimately, to Woolworth.

"One of the strongest themes in Wonder is that of 'choosing kind.' Coincidentally, Dignity Health's current marketing campaign at St. Joseph's is 'Hello humankindness',"says Takeuchi. "I visited the class twice, talking about accepting differences in people with kindness and understanding, and then helping the kids with an art project that involved tiles to decorate with their own interpretations of the one-eyed illustration on the cover of the book."

To help prepare the class for Woolworth's visit, Dewberry asked students to formulate questions to give her in advance. They included things like: "Do you ever feel self-conscious?""Has it been hard for you to make friends?""Have you ever been bullied?"

Portrait of resilience
Finally, it was time for Woolworth to meet the class. In addition to her students, Madison's top officials, and a reporter and camera crew from KPNX, the local NBC-TV affiliate, were on hand for her visit.

Rather than just prepare a speech, Woolworth decided to give a PowerPoint presentation of her life story.

"I've had many surgeries — including a major jaw surgery last year — that have dramatically changed my appearance,"says Woolworth. "I wanted to give a visual picture to the kids of what I've been through, from the tracheotomy tube in my neck that I used to breathe for most of my life to my hearing aids and orthodontic braces. I showed them what I looked like from toddlerhood to my high school prom."

Even more important, Woolworth talked about how her looks impacted her interactions with peers. "I spoke about how I had to convince people to treat me as an equal, despite the fact that I looked different,"she says. "And I emphasized the difference between people being friendly and actually being friends."

"So many of our patients are introverted and shy because of this syndrome,"says Takeuchi. "Sarah has become a great role model for them, as well as a spokeswoman for the general public."

Opening minds
Ruby Dessaules, 11, says she was surprised to see that Woolworth "really doesn't look very different anymore.

"I could see that she had scars on her face from her surgeries, but I was happy for her that she was so confident despite her problems,"says Ruby. "I will definitely be friends with different people now and stand up for them if anyone else is being mean to them. That was the really important lesson in the book and in the speech Sarah gave."

Adds her classmate, Charlie Parker: "Both the book and Sarah made me realize that it doesn't matter how someone looks on the outside. It's what's inside that matters. Most kids just want to be kids."

As for Woolworth, now an elementary education major at Paradise Valley Community College, she hopes the talk she gave at Madison is just the first of many.

"I want to continue to educate people. I'm different. You're different. We're all different,"she says. "And guess what? It's more than okay to be different — it's normal!"


Copyright © 2016 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.

Copyright © 2016 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.