“Forget about your disability and live life to the fullest!” – Stacy Johnson

Mar 16, 2014 News

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By Romila Boodram

Believe it or not, but this 27-year-old has done almost everything a so-called normal person does, including “shaking away” at various clubs in Georgetown and even visiting different countries.

Despite being diagnosed with Osteogenesis Imperfecta Type III also known has brittle bone disease, Stacy Johnson, who is confined to a wheelchair, has exhibited an unwavering determination to live her life to the fullest and enjoys everything that life has to offer.
Osteogenesis Imperfecta (OI) is a congenital bone disorder characterized by brittle bones that are prone to fracture. People with this disease are born with defective connective tissue.
Persons born with this disorder are affected throughout their lifetime. Those who suffer from OI Type III tend to fracture bones easily, sometimes even before birth. They experience respiratory problems, loose joints, poor muscle tone in arms and legs, and spinal curvature and sometimes barrel-shaped rib cage.
Type III is distinguished among the other classification as being the “progressive deforming” type, wherein a neonate presents mild symptoms at birth and develops the aforementioned symptoms throughout life.
There is no cure for OI. Treatment is aimed at increasing overall bone strength to prevent fracture and maintain mobility.
During a recent interview with this publication, a cheerful Johnson, who resides at Tucville Terrace with her parents, Pamela and Roy Johnson, and siblings, explained how exciting her life has been and at the same time she recalled some of her challenging moments.
Stacy was born “normal” but as she grew, her body started to change.
“I used to break a bone in the simplest ways. When I was a child, I broke a rib because I was lying on

a sheet and my mom pulled it from under me. I fractured my ankle when my mom was putting on my shoe.”
Stacy says that to date she has sustained approximately 70 to 100 fractures since childhood.
“The good thing about this disease is that during your adolescent years, the number of fractures tends to decrease after you go through puberty.”
Stacy, who now works as a typist at the Ptolemy Reid Rehabilitation Centre (PRRC), said her fracture rate started to slow down at the age of 13.
The PRRC was established in January 1967 by the Ministry of Health (MOH), for children who had suffered residual paralysis, following the 1960 and 1964 poliomyelitis epidemics.
In 1991, the centre launched an effort to improve resource acquisition to expand and provide quality service more effectively and efficiently. The centre was partially de-linked from the MOH and is now managed by voluntary management committee.
The government provides an annual subvention and professional staff, while the board raises funds both locally and externally to finance its operation.
During the interview, Stacy said that she started going to the PRRC for therapy since she was a child.
“I was coming here from an early age, but at age 12-13 I stopped attending regularly, because it would have interfered with my secondary schooling,” Johnson said.
She attended Tucville Primary and then the North Georgetown Secondary where she wrote eight subjects at the Caribbean Examinations Council.
“I got four grade ones, three grade twos and a four,” Stacy said. However, she was very disappointed when she found out that she couldn’t further her studies at the University of Guyana.

“I wanted to do Communication or Business Management, but it would have been challenging mobility-wise. UG wasn’t designed for a student in wheelchair,” Stacy reflected.

SECONDARY SCHOOL
Like any normal teenager, Stacy too had crushes. She recalled seeing “cute guys” but never had the courage to approach or interact with them.
“I know when you have a disability it can make relationship hard and I have accepted that. I don’t dwell on it too much. I know that I have a different appearance and I know that a person’s ‘looks’ isn’t everything, but it plays an important part,” Stacy said.
The young woman emphasised that her family and friends are very loving towards her and they’ve supported her in every possible way.
Although she was as old as the other students in her class, Stacy said she was always considered as the baby.
“If somebody said a bad word and I was there, they would say ‘don’t say that in front of the child.’ One time, before class started, they were playing a game of cards and one of them asked me if I wanted to play, but before I could answer, one of them said, “no, she can’t play cards, her family wouldn’t allow her to play,” Stacy recalled.
Despite her age, Stacy is three feet and 6.5 inches tall, but this obviously doesn’t prevent her from enjoying her life.
ClubbinG
Songs like, ‘Make me believe you’ by Denyque and ‘Dynamite’ by Taio Cruz make Stacy want to jump out of her wheelchair and get right onto the dance floor.

“I like to go to Palm Court and Club Monaco…and when I go I would take a drink and shake, shake, shake in my chair,” a relaxed Stacy said.
According to the endearing young woman, she likes any songs that will have her “jumping.” She also enjoys chilling at the Night Cap in Kitty with her best friend, Latoya France-Cummings.
Apart from clubbing, Stacy enjoys dressing up as different characters and attending Halloween parties.
For her birthday next month, she is planning to go to the popular Gravity Lounge to party.
Stacy recalled one of her odd moments occurring when three waiters from the New Thriving Restaurant on Main Street had to lift her in her wheelchair from the restaurant’s balcony to her taxi.
“This is funny. My friend and I went to the restaurant and my dad took me upstairs and when I was ready to leave, I called him, but he couldn’t make it. I called my brother and he too couldn’t make it and the restaurant was about to close and the workers wanted to leave, so three of them had to lift me and take me to the car,” she recounted with a smile on her face.
She’s also done a bit of travelling having visited Ireland and England in 2008 and in the following year, Barbados and Trinidad and Tobago.
Asked what advice she has for persons with disabilities, Stacy says, “I would tell other persons with disabilities to remember to respect themselves and others will respect you. I would also like to say that if you have a disability, you need to learn to let go of your vanity and hold on to your dignity and finally, I’d say keep a good sense of humour because you’re going to have to learn to laugh at a lot of things or you’ll end up miserable. Forget about your disability and live life to the fullest!”

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