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In this video, Shoshana Dreyfus shares childhood experiences of her son Bodhi, who has a severe intellectual disability.

In this video Shooshi Dreyfus talks about her son Bodhi’s childhood. As Shooshi points out, it is very difficult speaking for someone else, but including Shooshi’s “educated guess” about what Bodhi’s childhood was like for him was important for us to ensure that we were (in some way at least) representing those who cannot speak for themselves.

Listening to Shooshi talk, you can hear three stories emerging.

Firstly, you can hear Bodhi’s story. Shooshi clearly articulates how upset he was as a child due to his poor health. She also talks about things he enjoyed — flushing toilets, playing at parks, riding escalators — all of which offered him control in a world which he often found frustratingly difficult to control.

Secondly, you can hear Shooshi and her partner’s story as parents, their dilemmas in negotiating conflicting advice and supporting Bodhi by working out what would be the best for him. In many ways, it is always difficult for a child’s story to be divorced from a parent’s, and Shooshi manages to clearly articulate that what was difficult for her as Bodhi’s mum was not always what was difficult for Bodhi. As she says, Bodhi had a very happy childhood.

The third story is a socio-cultural one. What was often difficult for Bodhi was societal expectation around what it meant to be “normal”. What is appropriate behaviour, for example. As Shooshi explains, things were a little bit easier for her and her partner because they didn’t mind “indulging in the weird things” that Bodhi wanted to do — things which were often Bodhi’s way of orientating and communicating himself. But Bodhi was often in environments which did not understand or could not accommodate those behaviours. This sometimes resulted in changes to the environment (making a lid for the fishtanks), but it sometimes involved more restrictive approaches to his behaviour.

There is a long history on education for people with disabilities and the difference between Special Education and Inclusive Education (a distinction which can be found in the glossary). It is interesting to hear Shooshi’s justifications around education here and how they make sense within the context of the three streams of Bodhi’s story as described above.

As Eric points out in Step 4.4: The importance of looking across the life course, early intervention for children with a range of cognitive, physical, intellectual and/or learning disabilities can make a significant difference to their opportunities later in life. Perhaps for this reason many of the resources that you can find about children with disabilities are focussed on treatments and therapies, or children with disabilities as inspirational.

Expand your interests — If you are interested in the representation of children with disabilities go to Step 4.11: The child representing disability.

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Disability and a Good Life: Thinking through Disability

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