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Life as a disabled young man living in Bahrain has been documented in a heart-rending book that is being launched at a special ceremony next week.
Ali Mohammed Musa tells of the heartache of growing up looking different and wheelchair-bound, the jibes he suffered as a child and the stares he endures today.
But despite these obstacles this endearing young man has made the most amazing friendships, received love and support and remains confident he can fulfil his potential and open his own store one day.
Ali, 21, from East Riffa, said: “My aim was to shed light on the experiences of a disabled child, to show how I was able to accept my disability, face all the challenges that came my way and accept my luck, as destined by God.”
His book entitled A dream without limits – my story with disability is being launched at the Women’s Professional Network’s (WPN) second art charity event entitled Art Beat, on Monday evening, at Al Riwaq Art Space in Adliya.
His biography will be unveiled alongside the work of artists from the Bahrain Mobility International Centre (BMI) and the Bahrain Down Syndrome Society.
Ali explained: “I don’t want to place the blame on any party in this book, not the children who made fun of me at school, the school administrators that showed little concern for a disabled child, or the teachers who tried to teach me but could not because of either a lack of experience or lack of time.
“I want my story to raise awareness about the disabled and to help people understand that we can have an education, a job and run a business. We can depend on ourselves and, if given a chance, not always have to rely on our families.”
Ali’s story so moved Bahraini businesswomen Amal Almoayyed, a WPN board member, and her family, that they encouraged him to tell his tale and share his story. The publishing of his English and Arabic memoirs have been funded by the Yousif and Aysha Almoayyed Charity which offers support to the poor, the needy and the disabled.
His friend Ramadan Mohammad Ali also helped him organise his thoughts and translate his story from English into Arabic.
Ali said: “Writing every day has become a habit for me. I would always jot down what I was feeling and what I was doing. The idea of the book came to life after joining the Bahrain Mobility International Centre. When I met Amal and Ramadan it took off.”
Ali was born a mere 1.190kg and was placed in a hospital incubator until his weight increased. It was only later that cerebral palsy, a leading cause of childhood disability affecting function and development, was confirmed.
This disorder affects the development of movement and posture and is believed to be caused by damage to the motor control centres of the developing brain, possibly due to a lack of oxygen.
Ali has twisted limbs, weak muscles and spinal deformities and undergoes regular physiotherapy sessions at BMI to keep as fit and mobile as possible.
Ali underwent medical assessment in Saudi Arabia and Jordan and surgery under the skilful hands of Dr Kenneth J. Guidera and his team at the world-renowned Shriners Hospital in Philadelphia. The 59-bed facility provides specialised medical and rehabilitation services, at no charge, to children with orthopaedic problems and spinal cord injuries.
All is revealed in his book. Ali said: “I was encouraged to tell my story and I’m so proud that I have managed to write it all down. Everything is possible in life and I’m happy because one of my dreams has come true.
“Thanks to God, I have been able to type on my own computer after the surgery I underwent in America. Without that treatment it would have been impossible to do so.”
Ali continued: “Dr Guidera and his team saved me from death. If it was not for God and the fingers of this talented surgeon, I would not enjoy the health I have now.
“I hope my story will inspire other disabled people and give them hope. It may also help in spreading awareness and understanding about those living with disabilities to the rest of the population.”
There have been many key players in Ali’s life including his mother who has stopped at nothing to help educate, motivate and inspire him, his care assistant who has become a close friend and his ‘Canadian companions’ who, he says, ‘have given me a new life’.
Despite his physical challenges, it was clear to everyone who met Ali that he was as bright as the next child. His mother was determined to ensure he received a good education and enrolled him at a private school in 2004.
Ali said: “I was very eager to learn like the other children but my experience at school was both difficult and at times, bitter.
“I was the only disabled child in a regular class and there were no special facilities for a pupil like me. The children looked at me in a strange manner and sometimes made fun of me.”
Ali had to leave school after Grade Four when his classes were moved to the building’s upper levels with no wheelchair access. His mother made an appeal but to no avail.
Home-schooling and another spell at a private school followed. Ali said: “I never stopped ‘self-learning’, especially after God sent me an angel from Canada to rescue me from the darkness of ignorance and take me to a world of knowledge.”
That ‘angel’ was called Annette ‘Anna’ Vogelgesang. She had moved to Bahrain with her husband Edward who arrived in the kingdom to establish an engineering office.
Anna met Ali after hearing about him through her friend Linda, his physiotherapist. She started taking him on trips to the museum, concerts and historical sites.
Anna said: “Ali has left a very deep impact on me; he has been a simple, humble, polite and quite impressive young man. He was just in need of someone to listen and understand him, so I decided to take on that role.”
Anna took it upon herself to teach Ali to read and write, bringing books, films and education aids to his home. She would display alphabet cards all over the walls in his house and encouraged him to watch movies. Slowly his English improved and she even hired an Arabic tutor to assist him.
When the couple’s Bahrain adventure was coming to an end, they helped Ali and his mum obtain visas allowing them to visit their new home in the US in 2007.
The Shriners Hospital agreed to look at his case too. Ali spent seven months with Anna’s family and during this period his reading and writing improved and he was taught how to use a computer.
He became quite a celebrity in the community, was interviewed on TV by NBC News, and linked up with the Cerebral Palsy Association in San Diego whilst living in California.
Ali said: “To me, Anna is my second compassionate mother. Oh my God, how kind, loving and sympathetic to me she has been since I met her. Her husband and children have become part of my family. The world is really a wonderful place with the existence of people like Anna and Edward.”
When Ali returned to Bahrain he joined BMI at the age of 19 and it offered another ‘quantum leap’ in his life. The centre is a club for people with disabilities. Members meet twice-weekly in a quiet part of Isa Town.
It provides lectures, educational seminars and training opportunities, exercise and swimming in a private pool designed specifically for the disabled. Many supporters, such as the Almoayyed family, help contribute to the running of the centre.
Ali said: “What I love most in the centre is the interactions between friends with various disabilities. We talk about our feelings and we share our dreams and hopes.”
Anna and Edward donated their car to BMI when they left Bahrain and it is still being used as a shuttle vehicle for the disabled.
Aside from his favourite Canadian couple, Ali also says his care assistant and confidante Jennifer Cruz has played a pivotal part in his journey.
Filipina Jennifer said: “Ali derives happiness from within and spreads it all around. He never gets angry at those who mistreat him when we are together in shopping malls.
“All he wants from life is to live happily, be self-reliant and have an income-generating job. He loves sales and he is a good and convincing marketer.
“He aspires to one day run an electronics shop or grocery unit with a helper to assist him. Anything is possible for Ali.”
* Ali’s book is being sold at Al Riwaq Art Space and is priced at BD3. Proceeds from sales will be used to fulfil his dream of opening a small store.
