They spoke of friends who had killed themselves in despair after losing their benefits, of disabled people forced to use food banks, and of being unfairly found fit for work through the government’s work capability assessment (WCA) system.
Many also spoke of the importance of the Independent Living Fund – which the government wants to close – in maintaining choice and control in their lives.
A recording of the session will be sent to Shuaib Chalklen, the UN’s special rapporteur on disability, whose job is to monitor progress around the world towards equal opportunities.
He had been due to visit London to attend the meeting, and the launch of a human rights report the following day, but had to postpone the trip at short notice.
Jimmy Telesford, from south London, who previously worked at Brent Association of Disabled People (BADP) before it collapsed earlier this year, told the session: “At Brent for the first time I had disabled people come to me saying they had got no money and they had no-one to help them.”
He described how one woman with learning difficulties was sanctioned by Jobcentre Plus because she didn’t realise she had to look for a job.
Telesford, who is now trying to build up BADP again, said: “You are not talking about people who don’t have enough, you are talking about people who have no money.
“We are supposed to be the seventh richest country in the world and I have to say to people that they have to go to this food bank.
“So whether somebody eats is down to a group of volunteers, and I think there is something fundamentally wrong about that.”
The writer and performer Sophie Partridge said: “I have been receiving funding from the ILF for almost my entire adult life and that has enabled me to live independently and do the things I do.
“I work, I am involved with my community, my family, my friends, because I am able to employ my own PAs to provide pretty much a full-time care package which is pretty much all day every day.
“I am really, really concerned that the ILF is reopened and reopened to new users so every disabled person with high access needs can have the same quality of life as I do.”
Another activist, Robert Punton, said: “I am a disabled person living in a disabling society. Like everybody else in this room I have one major occupation and that is to ensure I continue to live independently in society and continue to do the things that I do.”
He said the support workers he employed “provides valuable pounds to the economy”.
He added: “We are not scroungers, we are not people sitting around, we are people doing jobs to ensure that everybody in society continues to live.”
He said that for every disabled person giving testimony there were “thousands and thousands of disabled people living in prisons in their own homes, isolated, who cannot be here today to make their points. Those are the people the UN should be aware of as well.”
Angela, from Brent, another disabled person who was providing testimony, said: “There is not enough support for people like me. At the moment I am relying on my brother to help and he has mental health problems. If he gets ill, I really will be on my own.”
She added: “I am glad disabled people are not sitting quiet. We need to expose this injustice.”
Anne Pridmore, one of the five disabled people who successfully took a court case against the government over its decision to close the Independent Living Fund (ILF), described how ILF had transformed her life.
She said she only had 20 minutes of care in the morning and another 20 in the evening when she was first “thrown in the hands of social services” in 1984. Now, thanks to ILF, she receives 24-hour care.
Pridmore, director of Being the Boss, a user-led organisation which supports disabled people who employ personal assistants, said: “If ILF finishes, my life is over. They could put me into an old people’s home.
“ILF has enabled me to travel all over Europe fighting for human rights; I have run some major organisations in this country.
“It has been an absolute godsend for me. Without it, I just don’t want to go on living.”
Maria Nash, who took an unsuccessful but high-profile court case against Barnet council over the outsourcing of local services. and is a director of Barnet Centre for Independent Living, said: “The government needs to take action and stop threatening us with the loss of benefits. It is creating huge problems, we are losing the will to live.
“Every day we are hearing that people are losing benefits and people are committing suicide.”
Several of those giving testimony found it hard to restrain their emotions.
Paula Peters described how her friend, who had bipolar disorder, had been found fit for work and told her doctor that she wanted to die, before jumping to her death at a train station in 2010.
Peters attempted to take her own life in January 2011. She said the stress of dealing with the WCA system was “horrendous” and although the “relief was massive” when she was found not fit for work, her fear soon returned. Her mental health has never stabilised.
She said: “This process is inhuman and so torturous. It has killed 18 of my friends through the stress and worry of it.
“I only want to ask why. There are thousands of people who have died due to the WCA and I just want this to stop.”
Another emotion-charged moment came after Martin Tolley, from Ipswich, described the constant pain he was in due to a chronic medical condition.
He said his health “took one heck of a nose dive” when he was going through the WCA process. He said DWP had failed to take his circumstances into consideration, and that when he told his physiotherapist he had been placed in the work-related activity group – for those expected to move towards employment – she “hit the roof”.
He cried as he finished his testimony by launching an attack on the government, who he said were “guilty of murder”.
He said later that he had eventually been placed in the support group – for those not expected to carry out any work-related activity – after his case had been reconsidered.
Anthony Jefferson, a trustee of the National Association of Deafened People, said it was well-know that during a recession “deaf people are the first to go and the last to be employed”.
He said: “They don’t understand how difficult it is to get jobs out there. I am talking for all deaf people and everybody with invisible disabilities. It is about lack of patience and lack of awareness and lack of training.”
Paul, another of those who presented testimony to the meeting, described how being put through the WCA system had made him seriously ill. “It has been 11 months I have been going through it, getting worse and worse.
“The advice from doctors is I have to stop thinking about it and put it out of my mind, but nobody understands the pressure we are put under when we are being assessed.”
Phillip Rackham added: “They want disabled people to work, but how can we work if there are not jobs for disabled people?”
The mother of a young woman with learning difficulties and a visual impairment described how her daughter was being denied a mainstream education, with the only place offered a residential special college 90 miles away.
She said: “Our family have been left isolated, [my daughter] isn’t receiving any social care support and education.
“If they have their own way she will be in residential accommodation, which is 90 miles away.”
26 November 2013