Reading not-Wednesday 27/6

[liv]

Recently read (Actually on holiday a couple of weeks ago, so not very recent, but I'm disorganized about updating.) Being seen by Elsa Sjunneson. (c)2021 Elsa Sjunneson; pub 2022 Simon Element; ISBN 978-1-9821-5240-6

Lots of people had really strongly recommended it so I put it on my wishlist and lovely cjwatson bought it for me. And I packed it for my travels the other week, and it's not exactly holiday reading because it's quite depressing, but it's also incredibly readable so I devoured it and then ran out of reading material. Oh well. On balance I'm glad I did make time for it.

So the main message of Being seen is that ableism is bad, which I was already thoroughly convinced by. But it's also amazingly well written – Sjunneson is a Hugo award winning writer and just really engaging. Like spending time with a really witty person who is also justifiably angry about society's awfulness. Having said I already agreed that ableism is bad, one aspect I hadn't thought of was that it makes disabled people extra vulnerable to interpersonal abuse, partly for epistemic justice reasons as people don't take disabled victims' reports seriously, and partly because the bar for how one expects to be treated is below the floor.

BS was also written in the middle of the Time of Isolation, so in a lot of ways it's about the pandemic (as experienced in American coastal cities). It is too soon for the definitive analysis but this account was really strong in many ways; the only other writing that comes close is Ed Yong's longreads. And there are two aspects specific to Sjunneson's personal circumstances: firstly, she talks of how she found the situation incredibly retraumatizing after her father had died of AIDS in the previous pandemic. I hadn't thought of the timescales, it's like the generation who were raised by survivors of WW1 and as soon as they reached maturity were conscripted into WW2. This is bound up with Sjunneson's acute observation that despite being a nice white lady she was already perfectly clear about not trusting the police, having seen how they treated her parents and their circle when they were protesting about AIDS. So she's in some ways well equipped to get involved in the #BLM protests as a white ally, but again, extra vulnerable to police and carceral violence because of her disabilities.

The second one was that Sjunneson (and presumably many other blind and visually impaired people) lost her guide dog to the pandemic; with lockdowns, the dog became bored and deconditioned and was no longer able to keep working.

So BS explores many aspects of ableism, but she particularly specializes in media analysis. She absolutely skewers the film Me before you which I already knew was hateful, but she also hates The shape of water because she sees the message as being that disabled people are only worthy to be loved by monsters. My take on that film had been very positive about disability, because I read the protagonist's romance with the fish-god as something to be celebrated rather than despised. So I was a little shocked to see it placed alongside a film about how great it is when disabled people kill themselves.

I was interested to read about Sjunneson's diagnosis of "congenital rubella syndrome", which I think is also the name for what my mother has, though I'd never heard it described as a formal syndrome before. Sjunneson has much more pleiotropic consequences than my mother for her exposure to the virus in utero, but also, she's most of 40 years younger than my mother and one of the aspects of ableism she describes is being treated as a medical curiosity because rubella has been almost eliminated now through vaccination programmes.

I already knew a fair amount about Helen Keller and how her myth-making is very different from historical reality (thanks, jenett). Sjunneson lays out how awful it is for the soppy elementary school and media version of Keller to exist as the only representation of deafblindness. And it was also interesting to read about how she's sometimes in a space between worlds, she's deafblind but has some vision and some hearing, especially with hearing aids. She was mainstreamed as a child and spent a long time trying to pass as non-disabled, and only really identified as deafblind later in life. Of course, one of the ableist attitudes she rants about is the assumption that there's a binary between ideal vision and no vision, between typical hearing and not being able to hear anything at all, or in general that people are either "disabled" or "normal".

In a particularly acute analysis, she talks about how there's no representation at all of her other intersecting identities. Nobody in any media is deafblind and also Queer. Nobody is deafblind and also a mother. Nobody is deafblind and also Jewish. Sjunneson's presentation of her Judaism is really fascinating to me, and it's something I've rarely seen: she doesn't explain anything for a non-Jewish audience. She talks about how hard it is to celebrate Pesach on your own due to the pandemic, but she doesn't explain how Pesach would normally be celebrated with a huge family gathering. She doesn't give any explanation or apologetics for the different denominations of Judaism and what it means that she belongs to a Reform community rather than any other kind. Maybe it's just that she can get away with assuming background knowledge among a broadly geeky, gen X and millennial, American target audience. But it looks like a deliberate choice given that elsewhere she's talked about how unpleasant it is to be a "teaching tool" as a disabled person. And I really did have some emotions about it, reading about my culture as if it was the default that everybody knows about rather than a weird minority that needs to be patiently explained.

BS would probably work pretty well as a beginner's introduction to ableism, and I consider myself reasonably knowledgeable but obviously (being abled myself) far from an expert, and still learned a great deal from it.

Currently reading The Archimedes Codex by Reviel Netz & William Noel. This was a loan from hatam_soferet, it's a non-fiction account of how a lost manuscript of Aristotle was recovered from a palimpsest. The writing is not the most amazing and sparkling ever, but the subject matter is really interesting and I'm getting on well with it.

I'm on a non-fiction kick, which is good because I really do need to start seriously tackling my pre-college reading list. So up next is probably something along the lines of The way into Jewish prayer by LA Hoffman.

Comments

[oracne]

This is a great review, thank you! I haven't gotten to it yet, alas, but it's on the wishlist.

[meepettemu]

I read that a year ago. I don’t remember the details of it but gave it 5 starts on good reads :)