Imran's Story

Imran Sabir has a rare genetic condition known medically as LOGIC syndrome. It is a very rare condition only known to affect people whose origins are from the Punjab area of the sub-continent. There are only a handful of known diagnosed cases in the UK. So far as it is known, Imran is the eldest of these, and the most severely affected.

His condition has had a profound affect on him. Due to this condition, Imran lost his sight in early infancy and developed severe breathing difficulties necessitating a tracheotomy operation. Since then, he has breathed through a tracheotomy tube inserted in his throat as he is unable to breathe through his nose or mouth. He is required to undergo treatment to clear the tube and his lungs of mucus at least every three to four hours but sometimes more often. The accumulation of mucus if not cleared would obstruct his airways, causing a lack of oxygen and considerable discomfort.

His condition together with the tracheotomy tube has resulted in speech difficulties. The condition also requires constant vigilance on safety as any injuries do not readily heal.

From the beginning, the reliance on treatment, medical equipment and the need for experienced, reliable people in his immediate environment has had significant affect on his life experiences and his overall autonomy and quality of life. Support has primarily come from parents and immediate family members.

His speech impairment restricted his communication with others. Interaction was only with adults and children who he felt could understand his speech. This meant his socialising and friendships during childhood were limited to few cousins, and a couple of school friends.

Imran completed his primary and secondary education at Saint Vincent’s School for the Blind. Due to frequent health problems he spent a lot of time at home sick or hospitalised, sometimes for several weeks at a time. Despite his frequent absences from school, he managed to remain relatively equal with his peers.

Mosques and madrasas, supplementary religious schools, were unable to meet his physical needs and as a result his parents and immediate family took responsibility for his religious and cultural education. The special school he attended made no effort to meet his religious needs, in fact, he had to attend mass and other religious events, compounding the challenges he and his family had to face.

Despite these difficulties, Imran managed to maintain his Muslim identity which he took much pride in. He learnt the ritual prayer from one-to-one sessions with the wife of a local mosque imam. He memorised it all by heart as in those days there was no other alternative. Due to difficult circumstances further Islamic education could not be obtained and for many years his Islamic education and practice remained stagnant.

When he was about thirteen years of age, Social Services provided a specially adapted computer in an attempt to improve his communication with teachers and peers. The A4 sized computer had a Braille keyboard for input and had speech output. Although it did not entirely succeed in its intended purpose, it exposed Imran to the power of technology and inspired him to begin basic PC programming. He could now play games and music and enjoy many educational activities previously unavailable to him. Later, he was provided with a Servox artificial larynx, a device which is held to the throat and amplifies the movements of the vocal chords. These were significant points in Imran’s life. He was able to communicate better with his teachers and form stronger relationships with his peers. His confidence increased and he gained a sense of competence and security as he felt more in control of his situation and environment. He was able to answer questions, convey his needs and participate in conversations. However, his access to social activities and religious education remained limited.

In 1991, he won the Disabled Scot of the Year award. Despite the media attention, things proceeded as they had done before.

Two years later, his lung collapsed after undergoing laser operation which had intended to open up his airways. He spent nine months in hospital and for three of them, it was unclear whether he would survive. It was a traumatic time for all the family.

This occurred during the run up to crucial exams. Once his health began to stabilise, his education continued in hospital and eventually at home. He was given special dispensation to sit the exams at home with invigilators attending. He achieved good grades and went on to study at the Open University. He completed one year of a technology course but then was advised that subsequent courses would become too diagrammatical and visual and it was thought that he may find this aspect of studies difficult to negotiate. He then changed his focus to psychology. Over the years, he completed many courses and units but progress has been slow and interrupted by bouts of ill health.

During the prolonged time in hospital in 1993, he awakened the desire to know about his religion as he wanted to understand his situation and gain a deeper sense of peace through seeking nearness to God. Doing his daily prayers alone was not providing him the contentment he needed. There did not seem to be many opportunities for him to learn more about Islam. As he matured, he wanted to enquire deeper into his faith and the implications for his condition.

For a number of years, there was no solution to this problem and Imran became very frustrated. It was impractical to attend Islamic establishments as he was mostly housebound and his health was very unpredictable. Teachers and religious guides felt uncomfortable making home visits and were inexperienced in teaching young people with disabilities.

The arrival of a local community radio station gave him the openings he was looking for. Listening avidly to as much of the broadcasted material as he could, he managed to fill in some of the gaps in his knowledge. However, this only increased his desire to learn more. Hoping that someone at the radio station or any of the listeners may be able to provide a solution, Imran began to phone in to some of the talk shows to raise the issue of learning for disabled people. The first few times the staff manning the phones hung up as hearing his electronic voice, they thought that it was someone playing a prank on them. After some family members phoned in to inform them he was a genuine caller, things became easier and he managed to raise awareness about the lack of opportunities for Islamic education for disabled people. His persistence eventually paid off. A local Imam took the initiative to come to the house and teach him the Quran and the ninety-names of Allah. After Imran memorised ten chapters of the Quran, the Imam was no longer able to come. There was a gap in his Islamic education which ended when a local Islamic society for volunteers to come out to teach him and to read Islamic literature to him. This had a profound affect on Imran. He absorbed all the information he could, but he still felt frustrated as these sessions were limited to one hour a week and he wanted much more of that. He began to collect recorded lectures of prominent teachers and continued listening to the radio. Although making progress, he still had many questions unanswered.

It was around this time that he made contact with other disabled people who had experienced similar difficulties. They began to work together to try and overcome some of the barriers they had experienced. They formed an organisation and chose Imran as their chairperson. He did an admirable job but the task was enormous. The group was breaking new ground and Imran needed to quickly develop managerial skills while continuing his studies at the Open University and develop his spiritual quest for Islamic knowledge. There were times where he felt like giving up the daunting task. He continued and through his work in this area came across an Islamic institution in South Africa using Arabic Braille as part of its curriculum.

In 2002, contact was made with Madrasa al-Nur, the Islamic School in South Africa who organised an intensive course on Arabic Braille. The culmination of week intensive week was when the fifteen students were introduced to the Braille Qurans and the students were able to independently read their first words. Everyone was extremely moved and filled with awe and delight. They felt much closer to the Quran and to God.

As Imran was fluent in English Braille, he quickly learnt the mechanics of Arabic Braille and the teachers gave him permission to teach others if the need arose.

In 2003, the fledgling group received funding and began its operations. Since then he has remained as the chairman of the organisation and has helped keep it together and steer the group according to need and established strategy. He attended many conferences where he was required to give presentations on the barriers faced by ethnic minority disabled people or to voice their views and opinions. With the advent of DAISY format and advances in scanning technology and optical character recognition he has developed the skills to not only access Islamic knowledge but to make it accessible to others who are facing the barriers that he has overcome. He is committed to helping others and to that end now chairs two organisations committed to removing barriers from people with disabilities.

He has memorised the thirtieth part of the Quran and is a student of a local sheikh who has enabled him to grow in spirit as well as in knowledge. This has not only helped him deal with his deteriorating health, but it has given him spiritual strength and the focus to make his activities meaningful and valuable to himself and to others.

Other Links