COMMENT: Restricting disabled people to the fringes of the fringe

It wasn’t a shock that the Care and Support Alliance decided not to include my tweet on the large screen behind the speakers at their fringe event in Brighton.

After all, the tweet read: “At Lib Dem conference. Looks like yet another fringe meeting about care and support with no service-user voice on the panel. #HealthDebate.”

You might have thought that a consortium of more than 50 organisations that “represent and support older and disabled people” would be desperate to ensure that the voice of the service-user was heard by politicians, other members of the health and care sectors, and even journalists.

But no, that’s not what the alliance is there for. Its job is to lobby for the interests of its member organisations, and the services they provide and the causes they raise money for, which sometimes – but certainly not always – coincide with those of disabled people and other service-users.

And it was these organisations that had paid for this event, and for others due to take place at the upcoming Labour and Conservative conferences.

So instead of a disabled user of care and support (and/or health) services on the panel, we had representatives from Mencap (for the alliance), the cancer charity Anthony Nolan, the Royal College of Midwives, and the Medical Protection Society.

On the panel’s right, in comfy armchairs, were the new Liberal Democrat care services minister Norman Lamb and the rent-a-mouth NHS commentator, “health policy analyst” and health consultant, Roy Lilley.

The topic of the fringe meeting was health and social care reform. A subject that could benefit – one might think – from the expert voice of someone with lived experience of the services the professionals were pontificating upon.

But no, the platform wasn’t quite wide enough.

Fortunately, in the audience, there were several disabled people. And one of them was the disabled Lib Dem party member Shana Pezaro, who challenged Lilley after he made a typically crass remark about how the government should pay people’s relatives to deliver their care.

Pezaro, who had spoken at another Lib Dem fringe about how the care and benefits systems made it economically irrational for her to have a long-term relationship, told the audience (and Lilley) that her social care package supported her to do some fairly crucial things: washing, dressing, eating…

“I don’t want my family, I don’t want my parents, to do it,” she said. “I want to live independently. I paid taxes, I ran a business, and then I got ill.

“Are you really saying that I shouldn’t get that choice and control and I should rely on my family to provide my care and support needs?”

For the only time that evening, Lilley began to back-pedal. “It’s not a silver bullet,” he said. “In some cases, with the right kind of support and funding, families can look after relatives. I was referring to elderly people. You are obviously articulate and you can do that.”

Another tweet followed from DNS: “#HealthDebate very thankful for Shana Pezzaro (sic) providing the service-user perspective at Lib Dem fringe. Long overdue in this debate.” Again, unsurprisingly, it was ignored by whoever was censoring the tweets the alliance was showing on the big screen.

So what about those disabled people who aren’t articulate? Pezaro asked me later. Are they not allowed choice and control? Some of the many people with autism or learning difficulties, perhaps. What if they don’t match up to Lilley’s required level of verbal fluency?

But of course Pezaro wasn’t able to make that point to the audience, or indeed to Lilley. Because she wasn’t on the panel.

26 September 2012