Updates
22/4/25 15:36![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
Due to the fact that I'm sleeping till midday, work makes this hard, but certainly by the weekend, if I don't report running in the cemetery, call me on it!
RFK Jr.'s autism study to amass medical records of many Americans
The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday.
( Read more... )
Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.
The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data, Bhattacharya said.
A slide presented by National Institutes of Health Director Dr. Jay Bhattacharya at a meeting of the agency's advisers, discussing the new autism research initiative.
In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data. Advocacy groups and experts have called out Kennedy for describing autism as a "preventable disease," which they say is stigmatizing and unfounded.
This is eugenics. Also, while there's little we can do about the expansion of the surveillance state, I do think there are some important actions that people can take regarding this. If you live in the US:
1). If you know any autistic people, avoid exposing them to this surveillance to the extent possible. Obviously this will have varying levels of feasibility and usefulness depending on the situation, but in our surveillance state age, a big part of security is just not drawing attention when you can avoid it, including in medical contexts. When possible, discuss the situation with them so you can follow their wishes.
2). If you are autistic, please take this information into consideration. Whether or not you are able to mask at all will obviously factor into whether concealing this information is even possible in most contexts. Nevertheless, in any contexts where it is possible, you may wish to consider doing so. Again, you can't do much about the fact that there's a lot of information out there on just about everyone. But it may be possible in some contexts (for example online, and especially publicly) to avoid purposely drawing attention to that information. And in an age where the information governments have far exceeds their capacity to process and make use of it, that can make all the difference.
Of course, that obviously might not be adequate protection, so you may wish to look into other possibilities. I can't tell you what the specific best options are for your situation. But I do know that most of those possibilities require help from others, whether those others are friends, family, or a group based on helping autistic people. In times like this, knowing who you can trust can be just as important as knowing who you can't.
3). If you suspect you are autistic, you will want to take this information into consideration when determining how or if you seek a diagnosis.
ursula used Governor Gretchen Whitmer's contact form to ask her to deny a permit to the proposed Line 5 oil pipeline, and will further celebrate Earth Day by attending a protest in support of EPA federal employee union members this afternoon.
From [Book Jockey Alex’s] blog:
general thought: Look, I get that the USA has a stranglehold on some aspects of publishing, and that someone writing from North America about books published in English is going to get a lot more options set in the USA. But for me to pick something set there to spend my precious reading time, the summary has to be spectacular. Ditto ‘class warfare (near) future dystopia’. I’m here for the escapism, dammit. In the Reactor article there were books more relevant to my interests later on, but I nearly noped out when the first five or so were so dire.
Overall - I didn’t quite make it through these lists. I found it near impossible to focus on the descriptions to see if there was something I was going to like; then I just skimmed to see if there was anything jumped out at me. Also, two of these are from 2020, so there were several I’ve either got on the wishlist, or have read. Of the ~80, I added four to the wishlist, but only one is a ‘really want to read’, and that’s because it is one of my must read authors.
The Spinoff’s best NZ books of 2024 - I found the summaries much more readable than the previous, and yet I added zero books to the reading wishlist.
The Best Books We Read in 2024—And What We’re Looking Forward to in 2025 by Words without Borders - books in translation. Another one where the summaries/reviews were interesting reading, but none sparked an interest in actually reading the books.
Read Palestinian Speculative Fiction Reading List by Sonia Sulaiman - to be fair here, I’ve read five booklists already, and I’m starting to flag. But this is the last one, and then I can close the window, and I’m very invested in that. So, I’m expecting to be unmotivated by any of the books, and that is not actually a commentary on what is written. … and then I started reading and discovered it is a stack of links. For now, I’ve shoved it into the ‘reading plans’ tab group, which is where anything online short fiction gets put until I have the oomph to read it.
The one thing about discord that I wish I could get on Signal is different names for different group chats. I'm the only Firstname Lastname LinkedIn-sona in this new trans group I've joined; everyone else has a single lowercase noun for a name, like a normal person.
I hosted a hybrid meeting today, and when D asked who was coming, the names I gave him were one animal, two vegetable, and one mineral.
Vacuuming for the flea issue does lead to some glee when you see all the dead fleas in the water tank of the vacuum.
Reading. I continue to make slow progress with both What An Owl Knows (Jennifer Ackerman) and Jonathan Strange & Mr Norrell (Susanna Clarke).
Writing. Grumpy e-mails to Labour, mostly? Grumpy e-mails to Labour. Oh, and separately to the DWP courtesy of My UC Journal.
Playing. I have tripped and fallen back into 2048. I do not know why I have tripped and fallen thus. There are other things I would rather be doing. Brain whyyy.
I Love Hue current status: just started The Alchemy/Knowledge/12.
Cooking. Two new-to-us recipes from East: caramelised fennel and carrot salad with mung beans and herbs, of which I am a fan but about which A is a bit meh; and Amritsari pomegranate chickpeas, with the decaf English Breakfast I bought the other week, which I also quite liked but A was mildly dubious of.
Today has featured a different Welsh cake recipe, from one of the charity-shop books I acquired for the purposes of the special interest in EYB indexing. This one includes honey and ground mixed spice; I am decidedly disconcerted by how much they taste like Wrong Texture Mince Pies when cool.
Eating. ... yeah it's been A Migrainey Week, and has consequently contained two rounds of Wagamama. TRAGICALLY I decided on the first of these to branch out and try Not My Usual. Not My Usual turned out to contain The Dread Mayonnaise (I had been lulled into a false sense of security by the number of things called "slaw" I had recently encountered that did not contain mayo). It was mostly salvageable...
Exploring. ADVENTURES in VAN HIRE for the purposes of moving SHED. This involved heading out to Hatfield, because the one fifteen minutes up the road was already Thoroughly Booked. We got to observe MORE FLOWERS and lo they were good.
... I think that's it? I think that's it. (A also went on another adventure to acquire roof box and appropriate rack, but I stayed at home for that one.)
Making & mending. I have not, technically, actually resumed A's pair of gloves, BUT I have now got the information from A I need in order to do so! So that's a progress.
... there has also been. Event prep. So much event prep. The meal ticket booklets for crew are all done; the potions are all sliced and folded ready for laminating (except for the one that needed someone to actually finish writing what it did); ... progress?
Growing. SO MANY SQUASH. Not all of the ones I sowed, but... a lot... have come up.
Somewhat irritated that somebody found my Bravest Dwarf Pea, which had actually managed to find and attach itself to the pea sticks, and severed the stem a little below said attachment. :|
Main infrastructural progress this week was getting all the railway sleepers and shed bits up to the plot (with significant and indispensable help from A). I've not done anything with them yet but they are there, I have plans, necessary hardware is en route, etc.
What else what else? First of the beans are in the ground. I was feeling decidedly surly about my redcurrant but this turns out to have been premature and unfair -- since last weekend it's unfurled a little more and is looking much more promising in terms of potential harvest. The raspberries also seem to be very much enjoying the mulch + semi-regular watering, which is pleasing.
Observing. I totally forgot to mention in last week's section on this topic that on the ride back from Anglesey Abbey we observed Many Cowslips, including at least one that was red!
Tulips continue fantastic. Irises are getting into the swing of things at this point. The bindweed is definitely waking up...
Conveniently I can no longer find the bit of the allotment rules that says No Bringing In Gravel, so I am making plans to blithely bring in gravel for the sake of a base for The Shed, which is Definitely going to Happen this time, Honest.
The chief component I am now missing is a floor. Conveniently, there's an almost-complete house being built just up the road, with a big skip outside it, which currently contains several large sheets of plyboard. I can't actually get at them (it's all behind gates), but I am intending to show up on Tuesday morning and look hopeful at whoever's working there then.
(I am also missing enough sharp sand to level, and the gravel, but gravel at least should be fairly readily acquirable. It is possible I am also missing Some Important Bits Of Wood, but I care less about that because I have so many bits of misc wood at the allotment that I am pretty sure I can cobble something together.)
I am not going to manage to get all of this together before I disappear off to a field for a week, but I'm optimistic about getting it done in time to e.g. actually fill the greenhouse with chillis for the summer (an irritating amount of said greenhouse is currently functioning as storage space and actually I'd prefer it to be growing space. Actually.) Even I have now read enough guides to putting sheds together that I'm at least half-convinced I can probably actually more-or-less work it out.
... I will report back either triumphantly or shamefacedly in a few weeks' time. Watch This Space, etc.
I'm wondering where I can find the UK transmasc organizing. (It is probably happening on reddit or bluesky or something that I don't have an account on, I know, sigh.)
Trans mascs/men's specific oppression under the supreme court ruling should be highlighted for itself, not in relation to trans women/fems' oppression, like as an abstract "beards in ladies loos" threat/stunt. (I'm sympathetic to the desire to "gotcha" the incoherent bigotry, but there are transmascs (yes even ones growing facial hair) who are already using the ladies' room because that's the way their safety calculations end up. Also I don't love the idea that beards or any other symbol of masculinity is inherently antithetical to, or exclusive of, femininity.)
Not only do TERFs talk about their "sisters" and "daughters" being swayed into "mutilating their bodies by gender ideology," books discussing this have been international bestsellers. Transphobic writers like Jesse Singal have made a career from anti-transmasculinity as well as transmisogyny.
One of the ways the UKSC ruling seems incoherent (from what I understand, I haven't read it all) is that while it says trans women should be excluded from women's spaces, it also says trans men should be excluded from women's spaces because of the "masculinising" effects of the testosterone we are all presumed to take. (This isn't surprising at least -- the TERFery that informed the decision takes a zero tolerance approach to testosterone -- but it never gets less baffling.)
This leaves trans men/mascs in a very weird position.
For example, can transmascs be removed from women's refuges if they take testosterone because it might "trigger" "survivors" (a status that of course no transmasc person could have, in this worldview)...? And of course I agree that a women's refuge isn't a great place for a transmasc person! But neither can we be left to just fend for ourselves around domestic violence.
A friend joked that if we can't be held in either male or female prison populations does this mean we can't be jailed, but their partner pointed out that transmasc people would likely just be held in solitary confinement.
Anyway. It occurred to me that most of the trans community I have -- certainly the activisty part -- is transfem, so before and after yesterday's protest I made some efforts to find both more trans advocacy and more transmasc community.
I'm in more WhatsApp groups and Discord servers now (sigh...especially because discord has found a new way to be inaccessible for me today! I literally can't scroll downwards!q), but I have plans to join some in-person gatherings this week too.