Living it

Like a lot of people who research, I live my topic, it’s part of my own narrative.  This has, for me, a somewhat messy heap of benefits – including thinking of the topic in the first place, seeing that it’s an issue socially and legally, and being in the privileged position of being able to spend time thinking pretty deeply about all of this *stuff*, some of which is my own *stuff*.


Daelle, refusing to fit into all kind of categories!

But it’s also hard.  Nearly everything I read and think about now is about profound disability.  I read articles about how we define people as “people” – as moral actors.  I read about horrific discrimination, or the lack of value of human rights, or about what on earth human rights (and humans!) are in the first place.  I read about programs for people with severe disability, and about the grief, despair, hope, and joy of their parents and carers.  I read about the nature of our laws of guardianship, our lack of human rights protections, our failures in social services and social administration.  And I am in all of those things I read, or at least a close neighbour.  Then, I think if I wasn’t in it, I would be missing an essential element, some intangible thing, that grounds it all and helps me see it.  I don’t have to hurdle the foreign language of a immersion in research area, I just have to see it when it’s all right there in front of me.

Having it all right there is also hard, I deal with some of the issues that prompted my topic nearly every week.  Our family moves through social welfare systems, financial systems, we make decisions all the time “for” Daelle, we share her care, so we have issues of disagreement and alternatives, we have funding, program choice, transport, therapy, aids and equipment, staffing, all this front and centre, every day.  The constant small hiccups and large catastrophes of having an adult person who can’t fulfill our system’s many criteria of being an adult person.  Where those criteria fall way, way down, how they hurt and harm, how they become endless exercises in bureaucracy, reporting, forms, how something essentially human is lost here….  At least through all this,  I get a constant parade of subject headings for my thesis!

This makes me think a lot about the nature of research, and how we see bias, what meaning we put on it.  I’m doing interviews later, too, and I think this will be interesting to share and think about as I go.  I’m planning on writing on all this in my methods section, maybe a paper too… Maybe!

Juggling, and Peppa Pig

I have kids.  It is school holidays here, and whenever this happens, I spend a little time lost.  My youngest is 9 now, so it’s not a onerous as it once was, but I still find working at home with kids a rough stretch.

I think it’s also the nature of the stage of the thesis that I’m at now.  I’m 8 months in, and still mostly reading and making mildly coherent notes.  My other main job in the first year is to write the confirmation document and presentation, which I’m starting to outline now (and when I say outline, I mean it: I have headings.  That’s it.).  So my work is a lot of thinking about stuff like the nature of being a person, what is an adult, or how complex social security administrative law works (I’ll have to get back to myself on that one!), and this is kind of hard, even if your kid is mostly self sufficient.  Even if she mostly does for her herself, she and her friends sure are noisy!  And seem to need food an awful lot.


Watching Peppa Pig after a seizure last week while I pretend to work on my thesis!

And if Daelle is home, it seems impossible!  There’s something about it that means I find it hard to divide my attention.  I’m not sure if it’s a something I should work on and try strategies to “fix”, or if it’s something that just IS and I should accept.  Having a profoundly disabled child is not just physical but is a mostly emotional labour, and maybe my thinking bits (a technical term) are too taken up with that and there’s no room for hard thinking too.

Of course, there’s the issue of my topic being at times very very close to home.  Which is another entry (or ten) to come…