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This is probably going to be one of my incoherent blogs, but may be good opportunity to play with some ideas.

Although my topic is around the learning of carers of different types within the autistic spectrum domain, a key element is the place of parents. I am exploring learning journeys as I want to understand better how the learning of lay people varies from that of professional, particularly given so much learning is on the job and the workplace of parents is the home. I am not interesting in diminishing the professional contribution, but I guess I am interested in the balance of power, knowledge, influence between the different players in the domain – and I am very conscious that the person central to the domain is all too often the one with least voice, i.e. the child.

Two thoughts are chasing around my head today:

  • many of today’s major charities had their origins in the post-war period. Although the specifics of each varies, there was often a perceived need recognised by parents or others, for example see the history of Mencap  which was initiated by a parent inviting other parents to join her and grew from there. Part of the function of these organisations was to give a voice to parents and carers and to ensure the future well-being of the children with different disabilities as they grew up and the parents were less able to provide the same level of care.
  • A major interest and concern of mine in the past has been that of ownership or control – the posh word for this seems to be agency. A key part of what I was observing in the early 1980s when working in the disability field was the change from primarily a care agenda for disabled people to a recognition that people with disabilities had views of their own and were capable of living full lives. My focus was on who owned disability organisations and I was seeing a change from philanthropic ventures to organisations of people with disabilities with a voice and purpose.

In the autistic spectrum domain, there continues to be a sense of struggle and fight to get needs met, with parents acting as advocates on behalf of their children. Is this part of a similar movement in the development of specialist organisations and ownership issues, or is it different, and in what way is it similar and in what way different.


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