Last week saw the launch of Community Care’s A Life Like Any Other campaign, which aims to give people with learning disabilities the same life chances as everybody else. As one of the pioneers of direct payments and the founder of Tameside People First in Lancashire, Andrew Barber, 60, has been fighting to improve the rights of people with learning disabilities for many years.
Barber says his quality of life is now much better than it used to be but he is angry about the years he lost, from the age of 16 to 27, when he lived in Calderstones long-stay hospital, in Whalley, near Blackburn. He says there was little to do at the hospital and he tried to run away seven times.
“It is like a big black hole [has been taken] out of your life. You wonder where the rest of your life is – and it’s gone. One of my colleagues who was in the same place as me used to have flashbacks of his time there.”
He strongly believes all long-stay hospitals should be closed down and is angry that government targets for their closure have been missed. “If they set a target to get people out they should meet that target. People with learning disabilities should be living out in the community because, let’s face it, we can all make a contribution to the community from our experience and what we have been through.”
Barber left the hospital to live in a hostel in Denton, Greater Manchester, and attended a day centre where he made items such as bird boxes for little money. After about five years he decided he wanted to get a job and left the hostel to move in with his mother nearby.
“I walked out of the day centre, went to the job centre and saw this job for a porter [in a bakery], they decided to give me a trial and I stayed five years.”
He explains how one day the boss of the day centre came to the bakery, thinking that he wouldn’t stick it out. He says this lack of faith is still held by many employers today.
“People say they [people with learning disabilities] won’t be able to do the job without even giving them a chance.”
Barber was forced to leave his job when his mother’s health worsened and he needed to care for her. She has since died and he lives alone.
Since moving onto direct payments in 1999, the first person in Tameside to do so, Barber says his life has improved dramatically. He has kept the same personal assistant since receiving the payments, rather than using many different staff, and is able to arrange for the person to come round when it is convenient rather than when care is available. It has also enabled him to take up hobbies such as plane spotting, and he went on holiday to Edinburgh last year to see the military tattoo.
Barber is a committee member of the People First group he founded and is deputy chair of the Tameside Mutual Support Group, a committee of people using direct payments that encourages more people to benefit from them.
“I want to take that forward because my hope for next year is to put on a conference in Tameside on direct payments, that’s my one goal now.”
This article appeared in the 24 May issue under the headline “Anger still burns from years inside”