Guyanese woman tells her story of living with brittle bone disease

--to push for more opportunities for people living with disabilities

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By Danielle Swain

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Stacy Johnson, a young Guyanese woman, has chronicled her story of living with the genetic bone disorder commonly called “brittle bone disease” in the hopes that it would push policymakers to break down barriers to education, work and recreation, for people living with disabilities.

Johnson, 34, launched her book “Beyond the Breaks” at the Pegasus Hotel on Thursday, October 14, 2021.

Hyacinth Massay, former Director and Rehabilitation Officer at the Ptolemy Reid Rehabilitation Centre, said it was a book that “had to be written” to understand Stacy’s “courage and strength” as she faced unimaginable difficulties as “a child living with one of the severest forms” of the condition where “if you as much sneezed hard, your bones could break.”

Johnson lives with Osteogenesis Imperfecta. The disorder causes soft bones to break (fracture) easily while some bones are not formed normally.

Stacy Johnson autographs one of the books (Photo: News Room/October 14, 2021)

The disorder has caused significant hearing loss for Johnson and she plans to use proceeds from the book sales to help pay for vital ear surgery.

Speaking at the launch of her book, Johnson said the autobiography was not a “project of vanity or tool for sympathy.”

Rather, she hoped her story would “serve as a tool for advocacy, meaningful engagement and action to keep policymakers moving towards ensuring equal and equitable opportunities and resources for persons with disabilities.”

This fight for equality is something that she is painfully familiar with, being denied both a sixth form and University of Guyana education because of lack of proper facilities for persons with disabilities.

Dr Vindya Persaud, Minister of Human Services and Social Security, who attended the intimate ceremony praised Johnson for being “transformative to the lives of others”.

Dr Vindya Persaud (left) and Stacy Johnson along with publisher Vic Insanally (right) pose for a picture with other members of Guyana’s disabled community (Photo: News Room/October 14, 2021)

Minister Persaud, along with Education Minister, Priya Manickchand who was unable to attend the ceremony, pledged to purchase several books to share Stacy’s story in the hopes it would inspire young people across Guyana.

Dr Persaud said her ministry has already taken steps to create ways to support persons living with disabilities including training programmes. She said there are plans for a training centre as well.

Academic Al Creighton reviewed the book and highlighted the writer’s ability to enlighten the public without appearing “critical” or “preachy.” He further shared that Johnson’s candid and direct writing style underlined by themes of “revolution and independence” was balanced by her light and witty humour. His conclusion is that the book is “well worth reading.”

Stacy Johnson sought to remind Guyanese that persons living with disabilities are just human beings too (Photo: News Room/October 14, 2021)

Three beautiful excerpts from the book, “Mount Everest”, “The Deep Sleep” and “A World Away” were read by Tamika Henry-Fraser, Cristal Smith and Johnson’s younger sister Crystal Johnson. The three pieces are a window into Stacy’s world and describe the author’s first trip up the stairs, her battle with depression and a visit to Ireland where the simple act of using the washroom highlighted how differently people with disabilities were treated in Guyana.

A copy of “Beyond the Breaks” published by Guyenterprise can be purchased for GY$3,000 (US$15) at Austin’s Bookstore or through the author, Stacy Johnson.

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