lightreads: a partial image of a etymology tree for the Indo-European word 'leuk done in white neon on black'; in the lower left is (Default)
Carnal Acts: Essays

4/5. Collection of her work spanning many years. Demonstrating (1) that she gets better with age (who doesn’t?); (2) she knows it and feels a bit squirmy about early work (fair enough); and (3) that I read her differently now. I’ve always appreciated her, but she was on a different track, disability-wise, than I was. Her disease was progressive and mine wasn’t. That changes things.

Now my disease is progressive – was always progressive but has now progressed – whatever. And, suddenly in the past few weeks, an old friend is finding herself somewhere near the end of that long, slow slide down. That changes things. She knocked the breath out of me at least twice.
lightreads: a partial image of a etymology tree for the Indo-European word 'leuk done in white neon on black'; in the lower left is (Default)
Waist-High in the World

4/5. Essay collection. The first half is personal – about her marriage, her diagnosis with MS, etc. – and the second half takes a broader view of disability in society.

I think the best thing about this collection is how she lets herself have complicated emotions out loud. She's not wall-to-wall disability pride (though she definitely has it). She can talk about contemplating suicide when her husband, her primary caregiver, was facing possible imminent death from cancer, and also talk frankly about choosing joy. She can portray the strength of her marriage, and her husband can speak through her about his choice to stay in the marriage as an active one. He might leave one day. They both know it.

She makes people uncomfortable, that's for sure. I read an essay of hers back in a feminist disability seminar, and I remember how upset a lot of the other girls were by it. They said they were upset because her husband was honest about the burdens of being a full-time caregiver. Secretly, I suspect it was partly because she talks frankly about liking sex. Personally, I think any marriage that is so consciously chosen by both parties and that endures despite incredible strains that – the statistics show us – the vast majority of marriages don't survive means it's a hell of a good one, even if it makes people uncomfortable. Being disabled and having complex feelings about it makes people uncomfortable, news at 11.

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lightreads: a partial image of a etymology tree for the Indo-European word 'leuk done in white neon on black'; in the lower left is (Default)
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