kaberett: Overlaid Mars & Venus symbols, 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: Overlaid Mars & Venus symbols, 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: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
who the hell am I supposed to contact given:
  • smokers are (illegally!) rendering my building so toxic that I can't actually enter/exit it without rendering myself unable to breathe
  • an initial e-mail 4 months ago to disability services & building manager has resulted in no useful follow-up, and nor have the two most recent chasing e-mails

... because this isn't actually sustainable. I can't do my job without entering the building; I can't enter the building without getting poisoned, and if I were actually on a contract I'd be seriously thinking about constructive dismissal, but that's not how PhD stipends work.

(No, really, at least two hundred metres of corridor and the entire central stairwell are currently not actually usable by me without causing damage. The only mostly-safe route to my areas of work has no working lifts. I literally cannot get to my desk +wheelchair without exposure, or to my lab at all unless I time breathing very carefully. As for getting to my desk without chair, it's about six flights of stairs, which isn't sustainable given my joints. It is shit.)


Jul. 14th, 2014 12:58 pm
kaberett: a dalek stands at the foot of a flight of stairs, thinking "fuck." (dalek)
It is 1pm; I have not yet managed to leave the house, in part because neither getting my wheelchair up the stairs then dealing with buses nor getting the tube then walking 2x500m sounds like a thing I want to deal with.

~the DWP still thinks I'm not disabled~
kaberett: a watercolour painting of an oak leaf floating on calm water (leaf-on-water)
Sickness is not another country.
It's an ocean, with checkpoints on the beaches
and border guards of stone and surf.
And oh, we vessels, we
put in, sometimes, to unanticipated harbour
surprised - delighted - by reprieve.
You, perhaps, may disembark, may embrace land--
but I'm cast off, compelled
to struggle through the storm and pray for calm.
kaberett: Euphorbia cf. serrata, green crown of leaves/flowers central to image. (spurge)
Every time I hear about IfThisThenThat I get briefly excited; similarly with respect to [twitter.com profile] pjf's Exobrain... and then I remember that they work with computer-based events, not with, for what of better terminology, embodied events.

BeeMinder and HabitRPG to some extent try to do this: rewards for keeping up with "habit-forming" and "goals", with penalties for falling behind. Lots of other places do this kind of thing, too: Codecademy I stopped using at the point at which they presented you with a great big "you've coded X days in a row" wossname you couldn't get rid of; [personal profile] sophie wrote a Greasemonkey script to hide the equivalent on Github; and so on. The reason these fundamentally don't work for me is, of course, that I'm chronically ill in ways that mean (1) the model of "do the thing every day without fail" is frequently actively harmful to me, and (2) the incentives to modify behaviour this way often override my sense of self-preservation, such that I either do things I really shouldn't be, or I feel awful for not doing them.

RememberTheMilk also isn't right for me. SuperBetter is the closest thing I've met to what I need - repeating tasks to be done at one's own pace, accumulating points & levelling up & such for doing them, without negative effects for needing to take some damn time off.

This is the reality of my chronic illnesses: I stopped brushing my hair every day when my depression got proper bad back in 2011, and I haven't managed to restart. My hair is waist-length. Dealing with my hair when it has gone unbrushed for a week is unpleasant and time-consuming. Living with the sensory distress caused by my hair being a mess is unpleasant. And it is still sometimes the case that my decision-making ability is so fucked that I need to conserve it for more important things, like eating or doing my dayjob. (Much as one can have tea spoons and table spoons and dessert spoons, I find I have social spoons and walking spoons and decision-making spoons.) (There is a post I am going to write, one day, about intimacies: about what it means to me that That One Lady likes to brush my hair and I will let her; about what it means to me to glance up from across the room and realise That One Gent is casually using my wheelchair as a footrest. This is not that post.)

It does not just apply to hair, where the issues range from "motivation" to "energy" to "my hands are too fucked" (if I can do a limited number of tasks that require repetitive hand motions, brushing my teeth is higher up the list than brushing my hair). It covers everything: from getting out of bed to showering to physio to, as I say, eating regular meals.

And what none of these things I have mentioned actually do - a thing I really, really want - is externalise the decision-making, the executive-function, part of the process, to remove at least the entry-barrier of "I can't remember how to". Yes, it's possible to write up long-hand notes about how to brush my hair or have a shower and stick them up somewhere that I can see them - but that doesn't have the granularity I need. What I'd really, really like is something that'll prompt me:

--> get out of bed
--> you've got out of bed! great! Next: brush your teeth. (Tell Me More)
--> you've brushed your teeth! great! Next: have a shower. [Tell Me More]
---> turn the lights on
---> is there a towel in the bathroom? If yes, continue. If not, fetch one from bedroom.
---> make shower curtain be in the right place (Tell Me More)
---> get into bath
---> turn on water flow
---> etc etc etc.

I don't know of anything quite like this that exists - that does "if this, then that" for daily routines where the concept of "habit-building" is fundamentally incompatible with how some brains work (I can forget how to shower, okay, that is something I have done unsupervised most days for about 15 years). I don't know how I'd make this work with the tech I have; I suspect if I decide to write it I'll end up with a smart device of some description. I don't know quite how to deal with respectful reminders (i.e. things that won't just make me hide from the device) -- but damn if I could get that kind of care without having to take up another human's time and energy I'd be all over it.
kaberett: Euphorbia cf. serrata, green crown of leaves/flowers central to image. (spurge)
Time management for crips with executive dysfunction. Go.

(This brought to you by yet another late night of being desperately excited by my science and not wanting to go to sleep because I could be sciencing... in the middle of a sprint that's been brought on by executive dysfunction getting everywhere when I could've been working slow&steady if I had any sense of how to manage this.)


kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)

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