kaberett | Entries tagged with disability

Today I finally got around to watching through a workshop on rare earth elements I'd signed up for and then slept through in February (and it took me a day to manage a half-day* workshop, but I'm pretty sure I got more out of it than I'd have managed live, so there we go).

Obviously, given the option, I turned on autocaptioning.

Ways that autocarrot rendered "rare earth(s)", in the context of "rare earths group", "rare earth patterns", and the like, over the course of the workshop, in order of appearance:

rabbit elements, rarest elements, relative element patterns, reverse grip, arrest elements,various elements, various, arrows patterns, rarer, red earth, "two quick ways of looking uh using railways", light rail, rare settlement, growth patterns, elephant patterns, relevant pattern, earthling patterns, flame pattern, real thermal pattern generator, real-time pattern, retinal pattern, wealthtrack patterns, weapon patterns, offline patterns, earthern pattern, real filament

* i.e. nominally ~2h of recorded material

( Read more... )

Various proximate causes, but it transpires that there's a local college of continuing education that'll do me a Level 2 Certificate... for free, as best I can tell... starting in September, by which point I will hopefully be done with the PhD except, perhaps, for revisions.

So I've applied (which consisted of supplying a name and address), and I need to get in touch with them to arrange a 30-minute interview, and then... maybe this... is going to happen??? Maybe this is going to be a thing.

In other news, this evening I have also (finally!) put together the request for my student loans to be written off on the grounds of disability, so that can get posted tomorrow, and Adam's collated all the information we need to apply for reinstatement of a dedicated on-street parking space, and for bonus points I have converted the introduction of chapter 3 of the thesis from bullet points to (highly conversational, minimally cited) paragraphs. I still struggle, naturally, with the fact that this is An Important Part Of The Process and is actually meaningful work, not just rearranging deckchairs or repainting the bike shed, but I have plenty of evidence by now that my work goes much better when I approach it like this even if I resent the perceived redundancy, so. Here we are. Life goes on.

look at my awesome mate who has EHRC funding to sue the government:

Disabled people are frequently unable to challenge the discrimination they face because of the enormous financial risk in taking an Equality Act 2010 case. Currently, if someone loses a discrimination case, they could be required to pay not only their own costs, but those of the other side, a sum many disabled people cannot afford to risk let alone incur.

This financial risk often renders the Equality Act 2010 ineffectual. The Act relies on individual enforcement. As individuals cannot challenge the wrongdoing, both the individual and society lose out. Those that discriminate know they are unlikely to be challenged.

[...]

In a legal challenge, brought by Ms Leighton and funded by the Equality and Human Rights Commission, the Honourable Mr Justice Edis has granted permission for a judicial review to examine the lack of Qualified One Way Cost Shifting (QOCS) in discrimination cases. A copy of the order is attached: the judge states that the claim is “clearly arguable on the merits”.

I am home. In my house. With my plants. (To my mild astonishment I actually Managed the public transport All The Way Back with only intermittent panic, and I only dropped things about twice, and only once in a way that was actually a problem.)
For bonus points, having dragged myself out of bed and through packing to get the 9.07 bus... and having then been expecting to hang around Redruth interminably until the 12.28 train... I actually arrived in time to get the 10.27! Which was beyond my wildest dreams in terms of getting home at a reasonable hour!
... it was a ten-car train, not a twelve-car. Which meant there were no standard-class wheelchair spaces. Which meant I was in first class. Which meant I got plied with free orange juice and sandwiches and cake, and felt mildly guilty, but only mildly.
NEW ROLLING STOCK I'd not been on the long-distance new(ish) GWR trains before, and they have a fascinating two-stage ramp system. And, much as I might grumble about it in practice, when we got to Plymouth I was moved to the rear set of first class carriages because the accessible loo in the front pair wasn't working -- and this is institutionally A Good to have happened unprompted and unrequested even though I did not, in fact, want to use the loo on the train.
A valiantly fed the breadpet while I was away. It became happy! It... became Very Happy. It... escaped its container by quite some way. (It is now being turned into two loaves, one of which I will be palming off on the allotment seed swap social tomorrow afternoon if I can bring myself to leave the house again.)
Having got some bread started upon my return home (lares & penates, honouring thereof, etc) I Left the House again and poked around supermarkets various, where I acquired the ingredients for burritos (having decided I wanted to Make Some and that The Instant Pot Makes Refried Beans Meaningfully Possible) along with Several Small Treats, and only got rained on a little (which is good for my plants so I'm not even complaining that much).
And then there was a the-new-regional-legendary raid on, so I did my first one... ... and it's 100% of all possible stats and I caught it on my second ball (of twelve) so it... wasn't even hugely stressful??? And that's... This Month's Legendary... Done...?! Hurrah.
Curled up on sofa with A finished Leverage ate some misery pizza (beans will take tiiiiiiiiiiime) did some talkings.
Items brought back from the mouldering ancestral pile this trip (for me): a pair of Felco Model 7s (in need of some tuning up); a bonus pair of ratchet anvil secateurs; my favourite of the walking sticks Papa owned, that I'd been keeping down there (he mostly used crook-handled sticks, which don't work well for me); a proper workbench clamp; my grandmother's collection of seeds, including the Ancestral Lovage (which turns out to be from Suttons but I'm not actually complaining); and a venerable train timetable for a friend.
I have discovered that it is in fact currently possible to buy my preferred form-factor of wok... provided I don't mind getting it shipped from Germany. Which is still better than "none of the shops I have looked in at any point over the past decade have in any sense contained the thing I want", so: tiny celebration, and at some stage I will work out if I actually want to buy one.

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.)

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

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.)

Some of you have specifically mentioned being interested in seeing other people's responses to this week's

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

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...

[x-posted to

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.

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.

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.

I WAS PLAYING POKEMON.

I'M FINE.

PLEASE TELL ME WHAT GIVES YOU THE IMPRESSION THAT I'M NOT SO I CAN STOP DOING IT.

As discussed by

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

spoonlessactivists, please by all means go ahead and do so.)

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.)

Over in

access_fandom,

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”.

[...snip...]

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.

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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... )

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

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 )

My Very Sad E-mail to the railcard folk got answered -

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.)

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.

DLA has come through :-) Still middle/lower, but I'm now good until 2016 so I'll take it. SUDDENLY, LESS STRESS.

who only by moving can balance

only by balancing move

adventures in autocaptioning

[dreams] mrghl

distraction of the day: considering qualifications in therapy

reminded by ending up on the same train as her this evening

ten good things {thought I'd something more to say}

last night I was so overloaded I put sumac on the potatoes

I'm sure you've all been waiting with bated breath

[food] oh go on then

[fundraiser] Cyborgs for Disabled Rights

In the process of writing up some overdue therapy notes, I had a realisation

Alex's (unsolicited) life advice

UK folk: time-sensitive write-to-your-MP task on disability rights

An articulation about terminology

Mad Max: Fury Road

On giving up on getting better

In which asking for help is difficult, who knew

Unimpress.

... aaaaah small explosion of relief

Um.

\o/

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