The Simon Heng column

An acquaintance of mine died recently. He had been born with a severe form of spina bifida, and had hydrocephalus – an enlarged head – under-developed legs and many associated health problems. His appearance was far from the accepted standards of beauty, and he knew that he wasn’t expected to live much beyond the age of 30.

He had been in residential care all his life. When I met him, he had been resident in a physical disabilities hostel for eight years – the same place that I was desperate to leave within 12 months. Although he loved to laugh and joke (he was a devoted fan of the Carry On films), he faced life with a fierce intensity. He was quick to take offence at the slightest provocation. Some people thought he had a chip on his shoulder.

Although he had made himself comfortable in the hostel, he wanted his independence. Eventually, he was granted a small flat. Having gained control over his life, at the age of 30, with no job prospects, he did what many of us do when we first become independent. He pleased himself, basing his social life around pubs. His life was becoming chaotic he suffered a series of accidents which were related to his drinking. His carers never stayed with him for long – perhaps deterred by his confrontational attitude.

He experienced hate crime: for some time after moving into his own place, children would throw objects at him while he was wheeling along the road they also threw things at the windows of his flat. They called him names. But they didn’t drive him away.

Ever since he went into care, his ­parents had kept in touch. They did things together as a family: in the 1960s, many parents were encouraged to give up their disabled children to the care system and to forget about them. Soon after his father died, he died too.

Through all of his disadvantages, his physical impairments, institutionalisation and experiences of discrimination he never allowed himself to be crushed, and fought to be treated fairly. Everyone who helped him should be proud of the help they gave him, and they should be proud that they knew him.

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