Where do disabled people who want to live independently go for help and support? Jeremy Kyle?

The following represents the personal views of Nigel Fenner, rather than Hertfordshire PASS.

The 5 young people on Hertfordshire PASS's employerABILITY programme were recently given the task, over a number sessions / days, to plan and perform their own role play(s) lasting about 30 minutes.  They could choose what the role play(s) focused on provided they covered any issues or challenges they have in taking up their role either as an employer of carers / Personal Assistants (PAs), or as a PA.

(For those who don't know, 'employing your own carer / PA' using a Direct Payment or Personal Budget is one of the most important means by which disabled people live independently in their own home, rather than being cared for by the State. The employerABILITY programme therefore brings both disabled people as prospective employers, together with young people, as prospective PAs, so that both work and learn together.)

What they came up with, working together as a group (3 x employers, and 2 x PAs), was 3 separate role plays covering 4 issues, all contained in a 'Jeremy Kyle show' format. I know little about this TV show, other than it is obviously popular with young people and those who have opportunity to watch day time TV. Wikipedia also describes it as "Kyle discusses the problem with the guests and "mediates" between all the involved parties, trying to help them reach a solution".

The 4 issues they chose and performed their role plays on, were

• A mum who has cared for her son all his life now wanting to put him into care because she was getting old, and 'wanting now to live her own life' 
• A PA 'taking over and doing everything' for a disabled student at college
• Two PAs employed by one disabled person spending too much time together (during work time) rather than providing a PA service to him, and
• These same two PAs stealing funds from the bank account of the same disabled person / employer.

As is often the case with role plays, all participants were able to take risks by pushing their character to limits they would not normally do, in 'normal' life. In addition, given the Jeremy Kyle format, there were attempts to resolve the above issues. These ranged from a social worker, as a guest on the show, being able to introduce the mum and her son to the merits of Direct Payments, to the use of a lie detector test to indicate that the two PAs in relation to the last 2 issues, were 'guilty'.

What struck me afterwards as we were reviewing the role plays was not so much why they chose these 4 issues ( - which is perhaps the focus of another blog), rather, why they chose Jeremy Kyle to resolve their issues / challenges. What was worrying was that they had little or no answer to my question 'who or what is the equivalent to Jeremy Kyle, in real life, for you, in addressing the challenges you might have in employing PAs and living independently?'

Given cuts to statutory funding the 'Jeremy Kyle role' is less and less likely to be taken by a social worker, which is why at Hertfordshire PASS we have always heralded the vital role that older and more experienced disabled people have in sharing their lived experience - in response to the sorts of issues and challenges that were featured in the role plays. This opportunity on the employerABILITY programme takes place every week in the 'hot seat' session where our prospective employers and PAs can ask whatever questions they like, and the visitor in the 'hot seat' is briefed beforehand to answer in terms of their lived experience - rather than lecture or make sweeping generalisations.

So perhaps a disabled person or better still a range of disabled people, experienced in employing their own PAs might be a suitable substitute for what Jeremy Kyle offers? I certainly think so, but is there more than just lived experienced that a disabled person offers?

(I've written about this a number of times in other blogs, see for example http://nigelfenner.blogspot.com/2009/09/boppis-song-and-darwins-survival-of.html or
http://nigelfenner.blogspot.co.uk/2011/10/foolishness-and-uk-becoming-more.html .)

In addition, I was also moved by a few lines in 'At the Wellhead', a poem by Seamus Heaney (Irish poet and winner of the Nobel Prize in Literature in 1995) who sadly died recently, who wrote of "our blind neighbour......; that blind from birth sweet voice.....was like a silver vein in heavy clay, night water glittering in the light of day....; being with her was intimate and helpful like a cure you didn't notice happening".

I'd like to think that when our hot seat sessions work well and the disabled person as the visitor, is humble, honest and open, that it can feel 'helpful like a cure (we) didn't know was happening'.

This may appear far fetched however when one considers that Carl Jung believed that "behind ones wound there often lies a person's genius" then maybe there is some wisdom and merit in what we do - in preference to whatever Jeremy Kyle might be able to offer?