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Chak Hong Fung
A Guardian poll revealed widespread misconception, with a third of Britons believing those with learning disabilities cannot live independently or take jobs. Photograph: Murdo Macleod
A Guardian poll revealed widespread misconception, with a third of Britons believing those with learning disabilities cannot live independently or take jobs. Photograph: Murdo Macleod

People with learning disabilities need to be empowered to fight their cause

This article is more than 10 years old
People with learning disabilities are often seen as service users or receivers and rarely employed as equal partners in the solutions

Imagine a feminist movement dominated by men; a black civil rights group staffed mostly by white people. This is how representatives from Change, a human rights charity run by and for learning disabled people, describe the challenge they face.

People with learning disabilities have a lot to campaign for. Many parents with diagnosed learning disabilities have their children forcibly taken into care. A Guardian poll carried out in 2010 revealed widespread discrimination and misconception, with a third of Britons believing those with learning disabilities cannot live independently or take jobs.

Yet the majority of the people working in adult social care and paid to tackle these issues – though "very passionate and well-meaning" – are not learning disabled themselves. Therein lies the problem, the charity claims.

Shaun Webster, a grandfather from Yorkshire and European project co-ordinator at Change, runs focus groups and trains health and social care professionals to work with people who have learning disabilities. But even professionals working in the industry are surprised by his level of responsibility. He has worked for the human rights organisation for 10 years, with the same ranking and salary as his non-learning disabled colleagues.

In 2003, Webster, now 41, was "doing the jobs that no one else wanted to do" in a warehouse and was bullied because of his learning disability. A decade on, he is earning a proper salary and travelling all over the world to train professionals around inclusion, accessible information and independent living. In January, he gave evidence in parliament at the select committee for disability and development. "Now I feel like the happiest man in the world," Webster says. "They listened to what I was saying. They treated me with respect and as a professional."

Change operates a co-working model: people with learning disabilities work in partnership with non-learning disabled colleagues. "It makes it hard for us financially at the outset," says founder Philipa Bragman. But the approach, she explains, saves money in the long term by making positive changes to the lives of disabled people from their own perspectives.

Bragman set up Change in 1993 after working with a group of mainly disabled women to set up the first refuge for women with disabilities in Europe. "There's money being thrown at things where mistakes are being made, where people with learning disabilities are not involved as equal paid partners," she says.

Accessibility is an important part of the charity's work and all their information is presented in a way that can be understood by people with learning disabilities. "I learn a lot every day – how to work more slowly and explain things," says Bragman. Much of the information that concerns people with learning disabilities is still written in jargon. Although lots of businesses are starting to make "easy read" information, Bragman says there is still no industry standard as the focus is usually on profit over partnership. She says: "It's like people with learning disabilities have become an industry. The danger is that empowering people with learning disabilities gets lost in the process."

Learning disabled people find it particularly difficult to access and understand information which is often glossed over, such as sexual health. "The people in society who need sex education the most, because they don't read so much and they're more vulnerable, are the least likely to get it," says Bragman.

Webster, a father of three, had his first child at 19. He thinks he may have waited longer if he'd had more information at the time. "They don't expect us to have sex," he says. "People with learning difficulties have sex like everybody else. I would be shocked if they didn't."

Both Bragman and Webster want to see people with learning disabilities employed to support other people with learning disabilities as peer-to-peer workers and role models. But this group are often seen as vulnerable adults, service-users or receivers, "but rarely employed as equal partners in the solutions," says Bragman.

Change is working with NHS England to improve the experiences of people with learning disabilities' in our health services. Webster says those working in adult social care don't always listen properly. "We have got a saying at work: 'get them while they're young because they're more open to change'."

The charity also works with universities. In feedback, 90% of students at Salford University said the two-hour workshop Webster runs most influenced how they work.

"We have not been saying anything different for the last 21 years," says Bragman. "There has been fantastic progress in many ways – but not around people with learning disabilities employed as experienced professionals in the change process. In society, people with learning disabilities are seen as not being able to do things, as not having the ability to learn. It's so deeply ingrained in our psyche that we don't even realise we're doing it."

This article was amended on 20 February 2014. It previously attributed a comment about working with social workers to Philipa Bragman. The comment was made by Shaun Webster.

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