Our Program's History
The writing program grew out of an intervention that was developed for one particular child, Tariq Johnson. Tariq lived with chronic illness and had been receiving care and services at Floating Hospital from his earliest years onwards. He was anecdotally referred to as the “Mayor” of Floating Hospital, because of his people skills and his ability to command a room—or an entire hospital floor. The Mayor was also known for his creative firepower. Tariq created a series of creative projects and dance videos with the Child Life program throughout his time at Floating Hospital—everything ranging from advertisements for a store of cardboard boxes to an alter ego and dancing persona named Detrix. Tariq was also extremely active in creative arts work with Camp Hole in the Wall, as well as the Boys’ and Girls’ Club of Wareham. One of Tariq’s dreams was to eventually become famous—perhaps for his dancing, or his duct tape creations.
Tariq began an intense course of treatments in the late autumn of 2013; he was 15 at the time, and was spending lengthy periods of time as an in-patient. Ginny Lewis, who was an Child Life intern within the Pediatric Hematology-Oncology’s Department, approached Tariq and proposed a writing project. She asked if Tariq might like to make a book, and he eagerly agreed. Together, they compiled a short piece about Tariq’s life and anecdotes about his most important relationships, accomplishments and life events. Ginny then took the written piece and some photographs, and did a bit of impromptu book-assembling. It was a bit heavy on the glue stick/Scotch Tape. When she gave Tariq his completed book, he was polite and appreciative, but looked stricken. After a little nudging, he admitted: “It’s just that…well, I thought we were going to make a real book.” Ginny and Tariq then made a plan to begin work on a new project, and she promised him that they would figure out how to make it “real”.
In the first day of working on the project, Tariq dictated almost 9 hours-worth of material—all of which was delivered in a dramatic and distinct range of voices and characters. He then spent the following two weeks working with Ginny and the Child Life program to continue drafting his piece, a chapter book entitled Agent Unlock. The book’s premise is that a young man, coincidentally named Tariq, has reading glasses that can unlock any encrypted object in the free world. Tariq harnesses his powers for good, to protect President Obama, National security, and his love interest from Dr. Shrogun, a mad scientist with a lair in an Icelandic volcano. At the book’s conclusion, President Obama makes a brief literary cameo to thank Tariq for all of his efforts. Tariq’s goal was to make a complete chapter book that was at least 100 pages in length. Ginny delivered the first edition of his book to Tariq in early February of 2014. This time around, he was pleased with the results—and immediately autographed one copy of Agent Unlock for Floating Hospital.
While all of this was happening, Tariq was simultaneously entering into end-of-life care. Despite his diminishing energy and strength, Tariq continued to work on his writing, and to give impromptu readings of his novel to anyone and everyone who walked past his hospital bedroom’s door. He also tacked a sign to his door, so that people would know he was a published author. Tariq wanted to have an audience; he also expressed that he wanted to share his writing with other children. Tariq passed away in mid-March of 2013. While Tariq did not live long enough to give an in-person reading of his book to an audience of children, Agent Unlock continues to be a major source of inspiration, and a touchstone, for the many children who now use Floating Hospital’s writing program. Ginny began piloting a modified version of Tariq’s project with the Pediatric Hematology-Oncology program in early 2013; she received an award in Research-Practice Integration from Tufts University's Department of Child Development in the spring of 2013 for the work and research that went into the eventual pilot project’s design. The pilot project then became a formal part of creative arts programming and Child Life services. When children are introduced to the program, they often look at several examples of previously published works. Agent Unlock has a strangely-magnetic quality; Agent Unlock is typically the book that children turn to and exclaim “That is awesome”, or “I want to do what he did.” Tariq’s work, and his unforgettable voice, continue to inspire the children, families and staff at Floating Hospital for Children. We hope to keep Tariq’s name and creative spirit alive by creating a community of gifted young writers and story-tellers.