So much I could say. So much I could post. Though of course not all of it I would post. I could and probably should post about the NDIS/disabilityCare thing and the problems with that label, not to mention any of the other funding or UN Convention on the RIghts of people with disability implications. Or I could talk about the sense of disconnect I fear between the expectations placed on the NDIS and what I fear the outcomes will be, especially in terms of the expectation of being participatory human members of society. Not to mention our own expectation of this.
I could talk about the trip to Melbourne; the changing vibe, the highs of interesting conversations about choice and image, perception and empowerment, of tram rides and train rides executed without fuss, or the extra of the seeking of permission, the lows of scheduling and missed opportunity, of mixed messages, of debates with taxi drivers yet again about the validity of the interstate taxi vouchers; (what is with it with this regular but random impression that no one with a disability travels, much less without an entourage of the strapping and the young).
I could talk about Seymour. Of awe over both people and the place. Of more interesting conversations. Of feeling both part and apart. Of movement, doing and watching. Of longing and yearning, beauty and sadness.
I could talk about the herald article about the sterilisation of disabled woman and self-directed care, assisted decision-making and full dependence. I could talk about the role of parents and the tensions there. I could talk about a housewarming party I went to a few weeks ago and a conversation I had with a woman doing research on the siblings of people living with disability and wondering what my brother would say.
I could talk about the experience I had at this college with them trying very hard not to exclude me from festivities but to also not drench my chair during a surprise water bombing.
I could talk about the books I am reading, expanding my thinking on questions of faith, doubt and also the future. I could talk about the management of sad memories and sadness for relatives that I don’t know.
I could talk about feeling increasingly invisible and unimportant generally and feeling a wish to bunker down but have more fun. I could talk about my efforts to declutter and simplify. I could talk about technology, in its failing and succeeding. Depth not width.
I could talk about the fact I wanted to stop talking and thinking about “disability stuff”, but have realised anew that it is interwoven as part of my own fabric. In fact I could write about how so much of the thinking and feeling outlined above is interwoven and feeding into a whole that as they say is greater than the sum of the parts.
I could and might write about these things. Or I might just post this as an expression of the way things are.
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- Reflection on my birthday