kaberett: Clyde the tortoise from Elementary, crawling across a map, with a red tape cross on his back. (elementary-emergency-clyde)
I was aiming for rosemary.

So it is probably just as well, really, that I had already decided not to do the march today (thank you all for reminding me that if it wipes me out for a week it's probably not worth it). Thank you for going; I am with you in spirit (even if what I am in practice is mostly a sofa gremlin gnawing on pancakes).

(I'm going through another patch, at the moment, of But I'm Not Really Disabled, Look How Functional I Am -- and then something like yesterday happens, where I lose my entire shit and stop being able to communicate with my face pretty much At All, and I remember that this used to happen multiple times a week and the only reason I'm impersonating a functional person to the extent I am, these days, is precisely the fact that disability benefits means I don't have to Do Things. So thank you all, also, for facilitating my carefully-curated life.)
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
MY CHILLIS ARE HATCHING. Four of them showing signs of life, so far, of about 16; hurrah for the warm plant box.

(Today has been... A Day. I got up and put the bread in the dubiously-working oven and set a load of laundry going and un/loaded the dishwasher and set that going and was all "behold! I have spent 45 minutes acting almost like a normative functional adult human! ... can I go back to bed now?" to which the answer was "no, you have your first therapy session since DECEMBER, out the door with ye." Whereupon obviously a lift at KGX was out of service in a way that would have been trivial to route around if it had just been announced and given the givens would have made me late for therapy had I not gritted my teeth and braved the escalator, but I was on time for therapy, and we shouted a lot, and then I managed to trick [personal profile] alexwlchan into taking away an aloe when we met for lunch, and then I came home and wanted to nap but there was to be The Oven Repair Man, who I very bravely dealt with all by myself, and then I jittered a bit and then I managed a small amount of work and now I'm making dinner and I could? just go to sleep? but also I... will be a happier Alex if I Do A Sum And E-mail My Boss before same. TOMORROW: a greenhouse, and also some scaffold boards yielded by my tiny magic.)
kaberett: a watercolour of a pale gold/salmon honeysuckle blossom against a background of green leaves (honeysuckle)
Some of you have specifically mentioned being interested in seeing other people's responses to this week's [community profile] thefridayfive, and I'm sitting around nervously watching the mass spec run without the concentration to do anything more useful, so here you go.

Content note: this week's theme is grocery shopping and meal planning. My answers therefore involve mention of sensory issues with food, dietary restrictions, and disordered eating.

Read more... )

Of course, what these questions don't touch on is HAVE I MENTIONED I HAVE AN ALLOTMENT. :D I make choices about what to grow (and where) for convenience; for example, I don't like buying cut herbs because (i) I feel vaguely guilty and (ii) they're never the right quantities, but I do like fresh herbs, so in pots on the verandah I've got mint, parsley, rosemary, sage, chives, and bay. I'm on the verge of buying seeds for two kinds of basil; an honourable mention to the ancestral wild garlic, that springeth green. I also had tomatoes on the patio (... I still haven't decided what to call it; "decking" seems awfully USois, somehow, and isn't quite in my active vocabulary) this summer, which was convenient and enjoyable enough that I'm likely to do it again. (I might also try cucumbers on the patio, depending on how the weather goes and whether I actually buy a greenhouse.)

At the allotment I'm prioritising things it's ridiculously expensive to buy (poppy seed! caraway seed! hopefully, if I get my act together, asparagus! bay leaves! soft fruit! hopefully some saffron, thanks to [personal profile] ewt!), things that come in entirely the wrong amounts always and are awkward to store (spinach!), things I always wince over the cost of and can rarely be persuaded to indulge myself on (fennel! purple sprouting broccoli! pak choi! shallots! interesting salad leaves! hopefully passionfruit!), things that are Brightly Coloured (this season I'm going to be experimenting with Painted Mountain sweetcorn, rainbow quinoa and purple chillis, among others), things it's otherwise tricksy to find (root parsley! :D), and things that are Just Better when they're really ludicrously fresh (hiiiii peas). I'd already been trying to eat seasonally; I'm looking forward to spending more time paying attention to plants, and trying to remind myself that I'm not going to be starting everything off hideously too late even if I am only getting back from Belfast at the end of February.

This is of course my first year with the allotment so I don't... entirely have a sense of how my shopping patterns will actually be affected, but I Am Excited To Find Out: I've already been enjoying working with the rhubarb and beetroot neighbours have desperately fobbed off on me, and with the things I've managed to get going already. So, you know, if compatible with your diet, should you visit me over the summer there's a very high chance that you'll be fed Things What I Grew (That Aren't The Sourdough), and should I visit you you might get brought A Tribute...
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
[x-posted to [community profile] signalboost]

Cyborgs for Disabled Rights t-shirts are available on Bonfire for the next two days, supporting wheelchair training and gear for a disabled Jew!
Hi, I'm Rachamim a Jewish wheelchair user in the UK. You might know me as Yetanotherlefty on twitter https://twitter.com/yetanotherlefty or wordpress https://yetanotherlefty.wordpress.com/

I'm getting a new wheelchair at the end of the month that will give me more independence and allow me to leave my house on my own and to continue to work at the local baby and toddler group. It's a very different wheelchair to my current one so I'll need training how to use it - I need around £500 for that.Any excess funds will go on other wheelchair related costs like a transfer board, wheelchair gloves and reflective stickers.
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
Specifically, the ableist issues with metaphorical deployment of "using something as a crutch" are well-documented. FwD suggests the alternative "training wheels", which never really worked for me; something about the connotations, I think.

I've just noticed that "using ... as a buttress" really does: while buttresses are reassuring and nice to look at, they fundamentally arise because we didn't understand physics so couldn't build things that stayed up without them. As we've deepened and developed our understanding of the world and our place in it they become superfluous: there are less visible and more efficient ways to achieve the same effect, but they require thought and work.

Which has a different flavour, to me, around whether there's an expected stepping stone to build confidence (as training wheels so often are), or whether one is fundamentally struggling to replace a maladaptive approach that was the best that could be done at the time but has been rendered obsolete, if you can get the budget and the time and the support to do the upgrade work.
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
I wish there were some productive way for me to communicate to humans at large that, if they see a lone wheelchair user Out And About, prior to approaching them they should ask themselves Two Simple Questions:

(1) Would the question I'm about to ask be kinda weird and intrusive if the wheelchair weren't present?
(2) Would I ask it anyway?

This enables people to e.g. stop and offer me a sympathetic cigarette because I'm clearly having stunningly obvious hysterics by the side of the river and have been for some time, while actively militating against... pulling their car into a lane they'd never normally be in, stopping, leaning over the empty seat to open the passenger-side door, and asking me if I'm okay.



kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
As discussed by [personal profile] rydra_wong, tomorrow afternoon Inclusion London and Disabled People Against The Cuts are hosting a briefing and discussion session regarding the UN finding that the UK government was engaging in grave and systematic violations of the rights of disabled people.

You can use WriteToThem to find, and write to, your MP, in order to draw this session to their attention and urge them to attend. The event details are:
Grave and systematic violations – What next after the UN disability inquiry? Briefing and Discussion
Committee Room 12, Houses of Parliament
2.30 – 3.45pm Tuesday 24th January 2017

My letter specifically pulls my MP up on his comprehensive failure to respond to my previous e-mail to him so will be of limited use, but just in case: Read more... )

(If any of you have the cope to adapt this for [community profile] spoonlessactivists, please by all means go ahead and do so.)
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
I react to being described as "in" a wheelchair (as opposed to using a wheelchair) by snarling, and I've just (in response to a Sociological Images article The NYC subway to a person in a wheelchair) worked out some more of the why.

There's part the first, which is that it's inherently passive terminology that obfuscates or elides my agency. But the thing I've just noticed, the actual big deal, is that it makes it sound as though me being in a wheelchair is a permanent and unalterable state, and that in turn contributes to the idea that if I can stand or walk at all I shouldn't be using one, and that by using one I'm faking -- in a wheelchair precludes the possibility of being out of it. I'm pretty sure this framing contributes directly to strangers' horror if I stand up to reach something on a high shelf in a supermarket, or get up to carry my chair down a flight of stairs rather than taking a sloped half-mile detour, or what have you.

(There's other issues - who's surprised? - with that SocImages article, including the part where actually level and step-free access is important to all sorts of people. It's genuinely very important not to conflate "accessible" with "level access", or to conflate "level access" with "wheelchair accessible"; the former erases a very great many disabilities, and the latter assumes that all you need is flat surfaces and doesn't stop to think about whether aisles are wide enough or there's space set aside for wheelchair users to sit, or what have you. ... but there we go.)
kaberett: A cartoon of wall art, featuring a banner reading "NO GLORY SAVE HONOR". (no glory save honour)
Over in [community profile] access_fandom, [personal profile] jesse_the_k quotes from an article on prosthetics in Fury Road:
Again, the Punch & Judy department of Warner Brothers throws a faked disability, a faux handicap, at us, in their Mad Max: Fury Road (2015) movie, and again, we consider it, just as we considered the attempts in Kingsman, or, Home of the Brave (2006), or, maybe in the ill-fated attempt for cinema titled “Hancock”.


So, here they go again; what do they do there? Is it good? And, before glorifying it just because (they even write “watch Furiosa punch Max in the face, with her nubbins” which she really doesn’t; she punches him with her hand while sticking the nubbins out in the air) – why not actually *use* our eyes, to look, to ogle, to view, and (in a more strict sense) “watch” it? It is so much a visual and so not much a verbal movie so we really have to switch on our eyesies. What is there to be actually seen, what do they really show? Is this empowering or what does it really say?

... and I went and read the article and then I had OPINIONS, mostly "I am interested in the mechanical details but I am absolutely seethingly furious about how he interprets the final sequence and the story arc", and then I expanded on that a bit more in comments, which I am reproducing here for my own archives.

Read more... )
kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)
There is a piece of art on display in the British Museum, part of the set-up for which is that the average person living in the UK will get prescribed 14,000 pills over the course of their approximately three-score-years-and-ten.

Currently, I am taking sixteen pills a day: 4 paracetamol; 3 NSAID of some description; 3 hyoscine butylbromide; 1 citalopram; 1 amitriptyline; 1 omeprazole; 1 loratadine; 1 B-vitamin; 1 C-vitamin. The vitamins aren't prescribed (but I'm demonstrably less mad when taking B supplements, and colds are much less debilitating when I'm taking prophylactic vitC); the paracetamol are; and sometimes I'm up at 8 paracetamol, and sometimes I take codeine, and sometimes I take diazepam or temazepam, and sometimes I'm on a citalopram dosage that requires me to take 2 tablets instead of one; so let's say that 15 is a nice round approximate number. This has pretty much been my regular meds regime since mid-2012.

That's 5475 pills a year. Approximately. Which gets me up to 14,000 in a little over two and a half years; or, to put it another way, since getting settled with this med regime in summer 2012 I've taken as many tablets as most people in the UK do in their entire lives.

Remove any of them - except, maybe, the vitC - and my function decreases measurably within days.

Damn right I have given up on getting better.

Read more... )
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
I have just received a quotation of £500 for repairs to and return shipping of one of my wheels. This is particularly frustrating because the problem started when I was wheeling on a level, even indoor surface (rather than being obviously related to any of the kerb-hopping I do), and consequently is being treated as a mechanical/electrical fault not covered by my insurance. Plus the wretched thing is out of warranty.

This is something I can do out of my savings, with a great deal of stress and a trip to Cambridge and eroding my buffer. Or it's a term's worth of teaching, but I'm not certain I'm going to even get teaching (pay rates increased by a whole 30p/hr, which means that the number of graduate demonstrators has been dramatically reduced, with undergrad TAs taking up some but not all of the slack). And, yeah, I feel pretty dreadful asking for help given that I could cover it, but--

-- if you like my art & essays, and only if you have anything to spare without making things harder for yourself, I would be enormously grateful if you could chuck some money my way. My paypal is kaberett@gmail.com; if you don't like Paypal (entirely understandable!) I can also provide my details for bank transfer (or, you know, work something else out). Currently at approximately £500 - thank you so, so much <3

Regardless of whether you want or are able to chip in on this (really, I mean it <3), comments are open for prompts for poems. They'll likely be shortish and a kissing cousin to flash fiction, but this is true of most of the stuff I write, so.

eta aaaaaaaaaaaah ;____; <333


Sep. 30th, 2014 09:19 am
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
Today is a departmental away day, at which I would actually like to be.

Last night was insomnia.

This morning it became rapidly apparent that I was moving slowly enough that I'd be late unless I didn't take the wheelchair, but that that would mean using the provided seating all day which in my current state would wreck me even worse for the rest of the week.

It was also pretty clear that I wasn't up to getting the chair out of the house by myself, and definitely not up to negotiating the underground or buses with it.

So I am still in bed, feeling guilty and also angry at my limitations.

todo )

tada )
kaberett: A photograph of a dark-grey train with white cogs painted on the side, with a bit of station roof visible above. (trains)
My Very Sad E-mail to the railcard folk got answered - [personal profile] quartzpebble let me forward the e-mail and assured me it wasn't a disaster, which is also some of how I deal with e-mails I don't wanna - very briefly, to the effect of "sorry about this, I see customer services have now sorted this."

... so I logged in on the website to check, and the status is now "dispatched". Which means it will be with me soon. Which means that I might have a card in the wrong damn name but I will at least have a card without having had to give them a name I didn't want to, and that's... a thing. *relief*

(However, I suspect this means that a different member of the team got assigned to verify my evidence-of-entitlement when I resubmitted and the structure's still fucked? WHATEVER I AM SORTED FOR THE NEXT THREE YEARS.)


Aug. 30th, 2014 09:22 pm
kaberett: Photograph of clementine with perplexed face drawn on. (clementine)
Can people, like, talk to me about the economics of doing a PhD part time? Because I think I need to at least consider doing this part-time rather than full-time at least temporarily (witness the last month, the majority of which I have spent asleep and incapable of sitting upright for more than about 5 minutes without noticeable impact on brain function), but I'm terrified because I have no idea which of ESA, Housing Benefit etc I'd be eligible for, and how much of my savings I'd go through before they arrived, and if they'd even make up enough of the shortfall.


Aug. 23rd, 2014 01:42 pm
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
DLA has come through :-) Still middle/lower, but I'm now good until 2016 so I'll take it. SUDDENLY, LESS STRESS.
kaberett: Euphorbia cf. serrata, green crown of leaves/flowers central to image. (spurge)
At the moment I'm talking a fair bit with [personal profile] quartzpebble about how disorienting and terrifying executive dysfunction can be. We've both been offered PhD places at prestigious institutions, we're clearly both capable of doing very good work within the context of the academy, and yet some days we not only can't even begin but we can't reliably sleep schedule or feed ourselves. Finding diagnoses that explain it - ways that other people have spotted patterns that match our behaviour, that mean it's not an individualised problem of laziness or whatever - is an immensely big deal, and nonetheless I just keep on coming back to Onsind when they sing I only wish that I could find a way to accurately describe the effect that this has on me.

Internalised ableism, I suspect, is playing a role here; to large extent I've learned that feelings of shocked betrayal aren't a terribly useful response to one of my legs refusing to bear weight, and that neuropathy affecting my lower limb function isn't actually a moral failing on my part. I can even do this about obvious depression-related symptoms. But just the executive dysfunction...? Not so much.

I have no idea how to make this work with my job. I love doing my PhD and I love being in academia and I'm very, very scared about the extent to which being an independent PhD student, "not needing hand-holding" (or, less disparagingly, "being self-directed"), is valued -- because of all the ways in which I can't be self-directed.

Which brings us on to the stranger on the bus a month or two ago who decided that the wheelchair-using young lady was appropriate cripspiration and started telling me about how amazing it was I was leaving my house, etc etc, along with cheerfully recounting for me the story about how her father always said that "can't" is spelled w-o-n-t.

Over and over again (I only wish...) I come back to "can't" and "won't", to the difference between "this is not a thing I am capable of" (and, again, I find this easier to handle in terms of physical impairments) and "I am not willing to make the necessary trade-offs to do this thing", to learning to trust myself in setting and defending those boundaries, to being able to believe that just because I can pay a price doesn't mean I must. "Won't" is allowed. "Won't" is permitted. This thing, too, I may have.
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
On Friday, I didn't make it out of bed until about noon, then threw myself through the shower and such as P was due to arrive. I then flumped about pretty uselessly until he prodded me out of the door and onto a train and basically dealt with getting me to the picnic that was M&C's joint stag/hen do. We stayed until 6ish, and I think I then maybe napped? But we collectively got some work done, ate another meal, and I introduced P to some of my current favourite TV and also some poetry I hadn't waved at him before.

Saturday he again took responsibility for getting us out of bed and out of the house for breakfast and in enough time that I could do the necessaries at work, we spent a bit more time than intended hanging around at the V&A, and then wedding. He & Nik took charge of making sure I made it from the wedding venue to the reception; after an hour or so at the reception I made it home, where [personal profile] rysmiel provided incentive to make there be dinner and spend the evening being vaguely human and useful.

Sunday rysmiel left early for their next thing, P & I woke up late (around noon), then I think P took charge of making sure we ate and I mostly spent the afternoon/evening asleep because I was wobbly as all get-out, to the extent that I stayed in bed rather than going to the Prom I wanted to (P went to the thing himself, I stayed horizontal and slept some more until I got well enough that I could get the breadmaker going for ill-advised late-night baking, and then I rearranged the kitchen some in ways I didn't really think through at all that resulted in me having to do a controlled fall in the pantry because I'd lost the ability to stand again).

Monday, again, P took responsibility for getting us out of bed at 11amish, phoning in a lunch booking and route-planning to get us to & from the place, and then for getting us out the door in time for the Prom (to which we did both make it). Also for organising dinner.

Today he left at around 8.15am. It is now 2, and so far I have managed to sleep through the fortnightly lab meeting I'm supposed to e-mail reminders about for the second time running, brush my teeth, and eat yesterday's leftover curry. Also check my e-mail. Smallcousins are having a summer party I really want to go to, but the idea of finding my way to Liverpool Street and then managing a train is daunting enough that I have not yet actually managed to get out of bed properly or shower or anything.

This is kind of why I need a carer. :-/


Jul. 30th, 2014 01:05 pm
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
[personal profile] recessional on appearing high-functioning.

I've got a loosely-organised collection of around 10 people who remind me to do basic self-care, visit me so I have a reason to prepare food when my housemate's out, do the laundry, help make groceries happen, definitely who facilitate sleep, prompt me to do housework that makes me feel better (see yesterday's todo/tada), and so on, and so forth.

All of this is work. I am simultaneously much less and much more independently functional than I look.
kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
Over the course of this DLA application, I have over and over again caught myself thinking oh, but my walking is so much better than it was last time I applied, what do?!

And the answer is: actually, that assertion's bullshit on at least two counts. Namely:

(1) none of my DLA award was for my physical mobility impairments
(2) the reason my walking appears to be so much better is that I have a wheelchair. This means I'm not walking (so much) even when I really shouldn't be, which means I'm less tired & more capable on "good" days.

In conclusion: mobility aids are great, and I still need to write the essay about how I got over myself enough to start using them.


Jul. 18th, 2014 10:29 pm
kaberett: Sketch of a "colourless, hamsterish"  animal having a paddy. (anxiety creature)
I have spent the past two days housebound in an attempt to let my lungs recover. Because reasons I had to pop over the road just now.

I still can't leave the house without coughing fits bad enough to prevent me walking.

I hate being this ill. I hate it, I hate it, I hate it.


kaberett: Trans symbol with Swiss Army knife tools at other positions around the central circle. (Default)

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