A story of hope: ‘How I learned to live again’
SANDY MCGREGOR has learning disabilities. For almost 40 years he was institutionalised in a hospital – a type of care which is now a relic of a bygone era. But even when he was finally moved into the community he was frustrated by an “over-protective” regime which included an alarm going off every time he left his flat.
Today the 54-year-old is living in his own home, he married last year and now enjoys travelling on holiday to places like Cyprus. His story is an example of what can happen if too much support is given to people with learning disabilities, stifling their individuality and right to choose, according to a campaigners.
Next month, McGregor will be a key speaker at a conference in Glasgow, organised by supported-living charity C-Change Scotland, which aims to deliver the “difficult” message that too much care can lead to a breach of human rights. McGregor suffered an accident as a child and, at the age of 10, moved to Ladysbridge Hospital in Aberdeenshire for patients with learning disabilities. He moved into the community when it was closed in 2003, part of the policy to remove outdated long-stay institutions for people with learning disabilities – but problems arose because he was being “over supported”.
Amanda Tough of C-Change Scotland, who has worked with McGregor since 2013, said: “Sandy wanted to live on his own, he wanted to have a pet, he wanted to have a relationship and he wanted to work. He had moved into his own home, but in a serviced building where five other people with learning disabilities lived. He is such an able man, but at times he could come across as being quite angry and that anger was misread as threatening. What he needed was for someone to listen and help him work through what he wanted from life.”
Tough said issues included having an alarm and buzzer on his front door so that support workers would be alerted when he went out – even though he was free to leave at any time. She added: “At one point he wasn’t allowed access to cleaning materials, as it was seen as too risky. So he went and bought them, cleaned his flat and then got rid of the evidence.
“One of the things he would do is take himself off and go for walk for a couple of hours. People used to panic and think he had gone missing – but we learned it was his way of coping. There has always been a sense of ‘we had better phone the police’ – but he hadn’t run off, he had a right to choose to go for that break.”
When C-Change first started working with McGregor he was living in supported accommodation with round-the-clock care. Now he receives around 16 hours a week of support to help, for example, with managing money. Tough said: “If he doesn’t need help, we don’t give it to him. His whole life has changed. He moved into a flat with his girlfriend Rosie and now they are married. He has a cat and has been on holiday abroad.”
Dr Sam Smith, chief executive of C-Change Scotland, said the case was not an isolated one and families looking after relatives with learning disabilities may also be failing to allow enough freedom and choice. She said this was particularly seen in the social isolation of young people, who were “protected” from forming relationships.
But she added: “I wouldn’t be suggesting the answer is to strip away support. What we need to do is focus more on what people can do. Sometimes that gets overlooked, particularly where people have a history of challenging behaviour. We do recognise all the risks, but we also try to focus on the person and what is unique about them.”