I went to an event recently with two of my staff and Chairman of Trustees, all of whom are disabled, to consider whether Hertfordshire might establish a User-Led-Organisation (ULO) network in support of disabled people, so following the example of some other counties. The meeting was set up and run by the County Council, and included a presentation by the Director of the National Council on Independent Living.
I'm not sure exactly who attended but from what was said in the welcome there were 5 commissioners from Social Services amongst an audience of about 30. As far as how well represented organisations who consider themselves to be user-led were, I can only share a conversation I had at the start of the meeting with one of my staff, who said "there aren't many users at this event" which during our chat about this, prompted me to ask the question "am I a user?", eliciting the answer (to my surprise) of "yes".
This begs the question 'who are the users in relation to user-led organisations?'.
There is no doubt in my mind the member of my staff who is disabled ticks all the boxes for a ULO, not only as a 'user', but now also as a 'leader' providing a professional service to other disabled people.
But what about the commissioners, and me? Are we 'users'?
In a roundabout way this was asked of me recently by a researcher from NIACE (National Institute of Adult Continuing Education) who visited us wanting to explore my management of a user-driven project (amongst many other issues), and I answered in terms of the aim or purpose of WorkABILITY, which I could identify with in terms of my own personal experience. The aim (originally agreed by users) is 'people with a learning or physical challenge overcoming barriers to work', and because I have experienced barriers to work over my working life, which have, and continue to challenge me, that I can work to this purpose statement from personal experience. I also pointed him in the direction of one of my blogs ('The framework that informs managing user-driven work' dated 18th September 2009), as well as an article I'd written in the first book published by WorkABILITY early in 2008. This article was in the 'My learning or physical challenge' chapter, where all contributing authors, disabled or not, were invited to write a piece. In mine I wrote:
"I have learning and physical challenges but in order to 'get on' in the world of work I have learnt to manage them so they are presented to employers and work colleagues either in a positive light, or not all. Since becoming involved with WorkABILITY and its aim......it is no surprise I have had opportunity to reflect on my own, and others challenges. From my experience with WorkABILITY, I don't believe some people have learning or physical challenges, and others haven't - as if certain types of people are better at driving WorkABILITY forwards than others. Given the opportunity, everyone has contributed their skills, insights, wisdom, perceptiveness, passion, honesty and understanding. Sometimes this has been because of our learning or physical challenges, and sometimes not; whatever, it has not mattered - as far as driving WorkABILITY forward is concerned."Not only do I still stand by this (2 years after I wrote it) but I can also claim to "have learnt much from the disabled people I have worked with" ( - see my 4th October 09 blog: 'Boppi's song and Darwin's survival of the fittest' and 19th Aug 09 blog: 'Giants and foxes that 'eat you up' - and the world of work').
But does this make me a user? I'm not sure, but what might help in answering this question is to try to uncover where my identification with, and appreciation of disabled people comes from. I think it all surfaced when I attended a L'Arche conference about 15 years ago. I was working for the YMCA at the time and setting up a mentoring / befriending scheme with disabled people ( - which was my first professional involvement with disabled people), so L'Arche, which has over 130 communities across the world where people with learning disabilities and their assistants live and work together, felt a good place to start.
At the conference we were all attending a communion service, which was no surprise given L'Arche and the YMCA are both Christian organisations. I was in a circle made up of disabled people and their assistants where we took it in turns to wash each others feet. At the time I could not understand why it had such a penetrating and unsettling effect on me but many months later I realized that having my feet washed by a severely disabled person was not what made me want to leave the conference, instead it had exposed the previously hidden 'disabled' person inside me I wanted to run away from.
I felt this was an embarrassing revelation that needed to be kept private, however what helped in the process of coming to terms with this, was reading Henri Nouwen's bestselling book 'The Wounded Healer' ( - which interestingly he wrote having had 7 years in a L'Arche community). Nouwen was convinced that
"for the minister ( - perhaps all of us in the caring professions?) is called to recognize the sufferings of his time in his own heart and make that recognition the starting point of his service. Whether he tries to enter into a dislocated world, relate to a convulsive generation, or speak to a dying man, his service will not be perceived as authentic unless it comes from a heart wounded by the suffering about which he speaks".
It's important to say here that the 'wounded healer' is much more widespread than you might think, being found in mythology, alchemy, eastern religion (ie the 'rainmaker'), shamanistic healing, psychoanalysis as first identified by Carl Jung, and in the caring professions where it is understood to be "a normal response to care giving...a normal human response" (Irene Ens, 2004. 'The lived experience of countertransference in psychiatric / mental health nurses.')
So what is the 'wounded healer'; where does it come from? Carl Jung believed it grows out of the countertransference or usually hidden impact the 'patient' has on the 'doctor'. The best practical definition I've found which explains not only my reaction at the L'Arche conference but also why I've worked for over 20 years in the caring professions, is from Richard Tillett (2003). He said "our urge to care for others is to some extent driven by our hidden identification with the patient role, based on projection of our own unmet emotional needs. We have an internal relationship with our own personal vulnerability ( - to be ill, frail, helpless, afraid etc) and our external professional behaviour is driven partly by this". (Tillett's article is called 'the patient within - psychopathology in the helping profession'.)
And maybe because I have faced this, and endeavored to understand how it informs my work, and that somehow this is demonstrated to those around me, that my staff member said at the ULO event that he believed me to be a user.....?
But what about the commissioners? A recent development that endeavours to bring commissioners (and providers of caring services) closer to users is that of
"co-production which rejects the traditional understanding of service users as dependents of public services, and instead redefines the service:user (or government:citizen) relationship as one of co-dependency and collaboration. Just like users need the support from public services, so service providers need the insights and expertise of its users in order to make the right decisions and build effective services" (People and Participation website).
This is good news but can, or will commissioners and service providers including myself, work on our own frailties, as 'wounded healers' for true co-dependency? This is an enormous challenge because "it is easier to live through someone else than to become complete yourself" (Betty Friedan (1963), The Feminine Mystique).
However if we 'live through someone else' are we not users of them......?
