Tuesday, 28 September 2010

Service-users at CE World Congresses

Policy of International Pető Association?

A parent writes –

I have been playing with the idea of attending the Congress after all.

It is, indeed, very much against the current world-trend, that parents seem to be disregarded as a force in this conference. As far as post-86 CE is concerned, it was we parents who brought about the present prestige of the Peto Institute – and with that the prestiege of those who work there and those who organise these world congresses.

Nowadays, no conference of this kind should be conceivable these days without the full participation of disabled adults, parents, carers and often disabled children too.

Should have been special grants offered for unpaid but active CE users so that they too could attend. Leaving our work and organizing proper “alternative care arrangements” are hard enough, without having also to pay for our willingness to play “expert witness”.

For “crazies” like me, it is not the money that matters, but the fact that this is going against all the currant slogans of “Equality” and “Human Rights” etc., as if there had been no intervening 25 years’ of development on this field. It is like being back in the 60s and 70s.

Can I ask you to find out whether my pride might be satisfied. Could I and others like me be entitled to some grant, or at least waiving the conference participation fees? Then I might be crazy enough to pay for the rest.

I missed the last couple of World Congresses. Looking back, however, I do not recall that the Internatinal Pető Association has made any big deal of attracting attendence of service-users to the ones that I had been to.

The last big CE bash that I attended was Tsad Kadima's Twentieth Anniversary Conference, in Tel Aviv, a couple of years ago. This picture there was spectacularly to the contrary. Both the programme and the crowd were redolent with participation and inclusion, a real family fest. Since then the only national conference that I have been to (not a CE one) was Cerebra's annual bash – the same sort of thing. These mixed lay + professional events are not easy to arrange, but they can be done and are the better all round for the effort's having been made.

If there are to be any further World CE Congresses, then the International Peto Association might start by considering contemporary expectations within the fields of disability, caring and parenting, and what was achieved in Tel Aviv in 2008, and ensure that in future it organises and budgets accordingly.


  1. Andrew,

    I have little experience of conferences but the one in Munich in 2008, and the one in Nürnberg, 2009, were very much integrated affairs.

    We even got the disabled toilet re-built on the ground floor in the hotel in Nürnberg for the occasion!


  2. If .... we can agree that not all events are always for everyone;

    If .... we can agree that some events are for specific audiences;

    Then .... it might be that the World Congress is not an event for parents per se ... if for no other reason than that of cost. And cost might prevent the organisers from sponsoring individual parents (how would they select?)

    Alternatively, perhaps CE organisations themselves, like Paces, should sponsor individual parents to attend? I am already looking forward to sponsoring a parent for the 8th World Congress!

  3. The Carers International Conference, held in Leeds, England this year, welcomed non-professional, i.e. carer/user participants, sponsoring (backed by governments sources) many of them. This sets the social inclusion/exclusion balance right and makes for a more productive, participatory conference.

  4. Emma - which body obtained the "governments sources" funding?

  5. Users & Carers Participation Group (part of Belfast Health & Social Care Trust), run by us volunteers but facilitated by the Trust. 3 members went to Leeds, presenting about our work. The Trust funded 2 people, and the group funded the 3rd. ("Our own" money was obtained by winning an award, earlier on.) I couldn't go because I attended another (nearly overlapping) 3-day conference in Hatfield (University of Hertfordshire) on Social Work and Social Work Training + research into same. I was fully funded to participate (I didn't present) as a carer, by the N.I.Social Care Council where I have been a long-standing (voluntary) committee member.