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Overcoming adversity

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The journey begins

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Gary aged 5

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Gary aged 15

Gary lived for 18 years. During that time his condition deteriorated gradually until he became totally dependant on me and his dad for his every need. From being a lively, active child he became wheelchair bound then finally dogged by frequent chest infections which turned to fatal pneumonia. He had not lived in vain however, having taught his father and I patience and fortitude. We had always been quiet and afraid to speak up for ourselves and avoiding confrontation. But Gary needed us to speak for him and fight for his rights as an individual requiring special consideration, and for the necessary aids and equipment. Up to the 1970’s children with mental handicaps were expected to be shut away in mental institutions. But parents had begun to disagree with this and wanted to keep their sons and daughters at home living as equal citizens in their own community. MENCAP championed our cause in Westminster.

Jack and I added our voices to others and in 1971 the government decreed that children with learning disabilities should be educated in locally situated special schools. Our local education authority (LEA) were short on guidelines so were obliged to ask parents for information regarding the individual care needs of their children. LEA representatives who visited parents in their homes were taken aback when they found that children aged five and over were still in nappies, being spoon or bottle fed and were on numerous forms of medication. Parents were demanding that their children, no matter what the severity of their condition, should have their medical and physical needs catered for to enable them to attend school.

Matters gradually improved with the constant involvement of parents and carers raising issues that needed attention. It was one long slog compounded by the hardships we lovingly tolerated in our caring role. Patience wore thin, tempers were frayed, social workers and educational psychologists were given short shrift when they came up with new ways of doing things that had worked well for years and some parents would not let them through the front door. Phrases such as ‘age appropriate’ were laughed out of existence. The parents’ motto was always ‘if it works carry on with it.’ Mentally handicapped children did not take easily to change. Nowadays, professionals in the field are more likely to accept that the principle carers are the experts. Another step forward is their acknowledgement that people with learning disabilities are able to indicate their own requirements. In consultation they showed their preference for the terms Learning Difficulties or Learning Disabilities to describe their condition. On the next page is a brief glossary of the main terms in common usage in the field of learning disability.

My father would not accept the fact of Gary’s disability. He eventually had his eyes opened at Gary’s funeral which was attended by so many people there was not room for them all in the chapel. After the service the head teacher of  Gary’s school talked my dad into understanding why Gary and his peers were so special. But then it was too late for him to make amends. His attitude had been just like that of so many people who, in their ignorance, are blind to the extraordinary qualities possessed by these people. They are kind and caring, lovable and loving. They give their love unconditionally and never knowingly cause harm or distress to others. Jack and I were wary of them to begin with but once we began to understand them we wanted to do all in our power to help them. Our task is now about raising awareness. Read on to discover where our journey takes us next.

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