I was reminded of Phillip Larkin’s poem “This be the verse” this week – and for anybody who hasn’t read it – it’s the one in which he swears a lot and blames parents for everything that is wrong with people. The reason I was reminded of it was because on Wednesday morning Mark Neary resigned from the badly named curating group of the forthcoming Rightfullives exhibition. Which is a shame because let’s be honest without him it just won’t be the same – but I’ll come back to that.
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Anyway – his resignation came about as a result of an online “discussion” he’d been having with Simone Aspis who felt that the curating group should have more people with learning disabilities on it and that she’d would help identify some people and organisations that we should work with. The offer was refused – on the grounds that the group is already sufficiently neuro-logically diverse – after which Simone went on the offensive and began to attack the project and a number of people who are associated with it. I am not going to go into details of this because Simone is entitled to her opinion and a lot of those opinions are opinions that I share. But I would like to clarify a couple of issues.
The first issue relates to the question of resources. I believe that at some point Righfullives has been compared to Mencap and some of the other larger charities. This is funny, because Mencap’s head office will probably spend more on tea and coffee today than we have available to run the entire exhibition. This is because Rightfullives isn’t a project in the formal sense of the word it is simply a few people getting together to create something that will allow people with learning disabilities and others to share their experiences, stories and work.
The second issue is more serious. Are we guilty of being in breach of the civil rights mantra -Nothing about us without us; or even worse are we – the small group of families who are putting this together – guilty of paternalism towards disabled people. It’s a fair question because as Larkin points out there is nothing more damaging than the good intentions of parents who will do their best but who will inevitably fail to live up to everybody’s expectations.
The answer to both aspects of this issue depends upon what you see as the key part of the exhibition. Is it the mainly administrative work that is being done by Mark Neary, Julie Newcombe and myself, and the advice that is being given by a small group of friends that will help us to deliver the framework on which the content will be delivered or is it the content of the exhibition itself. To use an analogy: what we are providing are the blank sheets of paper on which other people will create their own content. There are a few things that we won’t allow and we mainly won’t allow people to say anything that is likely to get them into legal difficulties; but apart from that there is going to be remarkably little curating going on and an awful lot of admin, and an awful lot of coding. Which is why the use of the term curating is unfortunate and which is why I am conveniently forgetting the fact that it was probably me that first started using it.
In truth allowing for technical constraints and the suggestion that it’s about human rights – the form and content of the exhibition will be determined by the contributors – and so far people have been very creative in how they interpret the brief – so it is difficult to see how what we are doing is controlling the voice and freedom of expression of those who are taking part. It is not just ABOUT people with learning disabilities or autism or both – they are its foundation and its essence – as are their families and the practitioners and researchers who support their right to a rightful life.
I hope we are not being paternalistic in the way in which we are approaching this, but I do think we have been sloppy in our use of language. We have used the language of projects and government to describe what we are trying to do, when in reality what we are doing is far less formal and structured and above all far less well resourced. It is dependent upon the hard work of people who aren’t getting paid, who don’t have budgets with which to pay for people’s time or expenses and who have to know each other well enough to be able to deal with the stresses that organising such an event entails.
Like everything that parents do, what we are doing is imperfect. There will be those who will see it as an opportunity to share their views and interests and some who will not. It’s up to people to decide whether or not they want to take part or stand on the side-lines and criticise the exhibition and the people who are making it happen.
As for Mark Neary resigning because he feels he’s damaging the reputation of the exhibition – no chance Neary.
2 thoughts on “The Problem with Parents”
Why is it called Rightful Lives when neither parents or their disabled children have any rights and that is shown by the dire positions they are now in ?
Should we not be pointing out what rights they should have if any and if they do, how these can be enforced ?
The position for the LD/ASD and their families whoever they are represented by, is worse than it has ever been, more are being removed to ATU and then for life to community living – all for huge profit. More are dying. And no one is representing them.
Surely these are the matters that are of importance. We do not have Rightful lives that is the point.
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Rightfullives is an aspiration Finola – as for the rest of your comment – I agree and the more we all do the better.
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