Sunday, August 21, 2011


Never mind the internet, never mind the "modern" or if you prefer "post modern" world. We all have connections.

Last night while searching for something else I came across Nasa Begum's dissertation. "the burden of care"

The reason why I have a copy is because Nasa was a courteous and responsible researcher and made sure that those interviewees who contributed to her study had a copy. One of them was my mum, and so in turn I inherited that with her papers.

It is sad in many ways, not only that she did not even live as long as my mum did, but for me to be confronted by what was in that research. I had never bothered to read it before, but last night I did. For all the conventional anonymisation I knew which interviewee was my mum, and what is worse I knew she was talking about me. It's one of these times when I count autism as a blessing, and I think there is even a hint at my autism in there, for whilst she describes things that were difficult and embarrasing for her as a recipient of care she says that I would not "bat an eyelid"

Indeed I wouldn't but I have some retrospective emotions to see how much it bothered her to have to receive the kind of personal care that she needed. She was not born a "disabled person" and that's the difference between us, a difference she once pointed out to me. I can accept so much more because I learned so much from her. Then again it's what they call a "two way street" I think quite possibly that I taught my mum a few things about the acceptance of "difference" anyway.

However to get back a blog or two, the one thing where my mum and I are perhaps closest is that never mind all that serious stuff in Nasa's study we laughed together. Pain is such a strange phenomenon that I don't know whether I have more, the same, or less than she did now. She was not a neuroscientist nor a philosopher and I have pretensions to both so that gives me even more to laugh about I suppose. One thing is very clear from my reading and it was painful in the psychological sense. That is the reading in Nasa's study of  psycho-social element of disability. My mum learned in a harder way than I did because I have benefited from her learning.

Before I leave the topic entirely I'm going to generalise a bit, no doubt i'll get four years in jail if I caught doing this, but I have to say this, and turning the subject towards the conventional narratives of autism from a parental perspective, you will often read the "pain" of the mother because the child supposedly "cannot" or does not say "I love you mummy"

Damn it all, I may never have said those words, but did I never demonstrate it?!!!!!!

 The "burden of care" was difficult for us both because it oscillated in different directions, towards the end of her life she understood more, those complications. I did what I did because it was necessary and would for all the world that others would do so and cut the social crap and embarrassment over it.

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