Life thoughts -- Rough Schedule

This is a rough schedule of the posts I am currently plannign to write, am writing, or have already written (posted or scheduled).

On Saturday I will be publishing the first in this Life Thoughts series, which will be on two big questions: "Who am I?", and, "Where do I want to be?", designed to help me focus my energies, spoons, and life goals more realistically. Not answering those questions, but explaining them as a framework for the rest of the series.

ASD in my life, in particular around specific impairments and/or adjustments I've made

• Executive dysfunction -- in progress.
• Being assessed, how to "de-mask", how to find an assessor, how the process was for me
• Co-morbidities

Academia

• Research goals - things I want to research myself
• Research interests - things I want to learn or understand, but am content just reading others' research
• vIMC commentary
• Study vs Appreciate, which subjects / areas go under which category
• Series on research progress
• Being AltAc

Crafting

• History-bounding -- in progress
• My periods
• Crafts for me
• Sewing plans
• Dream projects
• A series on project progress, including pre
• Gatherings - British Guild of Historical Costumers and other groups

Health & Personal bits

• Family, Infertility, IVF, and so on
• Mental health and ASD
• Disabled vs Impaired vs Having a disability
• Living arrangements
• Work/self/academic balancing

I plan to work on these as the whim takes me, but should anyone be reading this and want me to prioritise something in particular, do ask...

Start of the rest of my life

Long time no write. I've drafted a few posts, but not actually released them. As part of a general life overhaul thing, I'm going to stop that. Yes, one long-arse post will remain in draft for a fair while as fixing the code is an arse, but in general I need to get into the habit of just writing something each month at least. Will it always be "on brand"? Nope, but new habits only form if we do the thing!

So, what's up? With the pandemic, I've had the time to stop and think. I've been thinking a lot on two particular questions: "Who Am I?" and then "Where do I want to be?"

To this end, my plan for today is to start drafting a number of posts on various subjects investigating these questions, and then to schedule them for posting. I may need to go back and tidy some later, but the schedules will be set up well in advance. I will also need to decide how frequently to release them - too close and it's all a bit much, too far apart and it'll take a year to cover just my thoughts from this week! I'm thinking a theme a month, and then splitting them up into smaller posts maybe up to one a week. We shall see!

I'm also planning on having a weekly or monthly check-in post where I keep myself accountable (to me) on what I've achieved this week/month. Might be work stuff, crafty projects, some research, a new skill, house fixing, health progress, or more formal academics. Doesn't matter. The point is to get in the habit of saying "I did a thing!".

Inspiration Porn

So-called "inspiration porn" seems to be a fraught subject that can make a number of my friends very unhappy. For some it's Children in Need, for others it's those posters with bright slogans, and for others it's the social media videos that go viral because they have a disabled person doing something "ordinary" (or someone treating a disabled person as "normal"). I find my feelings towards the genre to be mixed. Some times they really rile me up, others are "meh". And yet there are also others that do help. So, what gives? I was musing on this today while at work, and decided to write out my thoughts.

Who is it for?

I think the first aspect of Inspiration Porn which has the potential to be problematic is the question: Who is it created for?"

Is it aimed at "normal" people or the in-community? 

So many of the Inspiration Porn videos (in particular) that I see which annoy the ever living fuck out of me are the ones which have a subtext. They say "See, you can do it - I mean THEY can, so why the fuck can't you, eh?". These pieces are othering. They see the world as "normal" and "disabled", and we are there to provide inspiration for them. These works seem to inspire a lot of <3s, cutesy comments, and talks about our "bravery", but not a lot else. My reaction to them, however, is either mostly at the comment threads, or directed at the commentary or annotations.

The people who seem to be allegedly inspired by these videos are the type to mostly elicit little more than an eye roll from me - they mean well, but they just can't see beyond platitudes and our disabilities. 

But not only Normals can be inspired. For me, seeing or reading about someone like me who has achieved something I didn't think was possible, or that I could do, DOES still inspire me. 

Why was it made?

This question is directly related to the last, but comes from a slightly different angle. As is so often said - intention matters! The difference here is not whether it's aimed at "normal people", but what is they expectation on seeing it. 

If it's intentionally created or promoted to elicit that "aww, so BRAVE!!" reaction, then it can do one. 

Was it produced to teach? It can be easier for us to forget when we look at poor treatment today, just how bad the general attitude towards the disabled was. Yes, it can be utterly shit, and sometimes downright horrifying, but for all that, we as a society have made progress. We have a long way still to go, for sure, but our trajectory is no longer at the beginning. Inspiration Porn can be useful in showing the non-bigot that the non-verbal can think, that not all Deaf are stupid, and that those with physical disabilities or in chairs can still love and participate in dance. Those people are our parents, potential partners, relatives, and friends. They need to know that we can, because when they don't believe in us, believing in ourselves becomes that much harder.

What about if it was for the in-community? Was it made for us to demonstrate to ourselves what we can achieve, so that we're holding our a metaphorical hand to others like us to encourage them to follow. One person's Inspiration Porn may be for another that spur that provides them with the impetus to achieve their dreams.

How can something decried as Inspiration Porn be "important"?

What? Yes!

Inspiration Porn has two aspects which can make it important to us. Yes, even the most saccharine and demeaning Inspiration Porn can be useful if we get control of it.

What is porn after all, but something that varies depending on the eye of the beholder. Not all conventional porn is carefully crafted, or even intentional, and the same can be said for Inspiration Porn. 

So, is it Inspiration Porn? 

A short documentary about conjoined twins who are teachers?
A cartoon about a person with clinical depression celebrating the small achievements?
A short story about how a person with a disability achieved their dream despite being told said disability would stop them?
How about an article about how the mother of a non-verbal autistic learned to presume competence?

What do you feel? For me it boils down to two questions:

1. Does it tell society "We can!"
2. Does it tell us "You can!"

I feel that if the answer to either is Yes, then that which I am dismissing as Inspiration Porn, is just Not for Me, in the same way that horror novels or Fifty Shades of Grey are Not for Me. They're doing the job for someone else, and that's fine, but like 50 Shade, they may need to get some further information to get a more rounded view.

What about a poster with a trite phrase on it?

Even that is in the eye of the beholder! If it's the thing I see on the day I need to see it, then sod off, it's Inspiration not Inspiration Porn. Being trite isn't automatically Inspiration Porn, it's often just crap that is intended to help. Badly... :P

In short, it's down to purpose and gaze, just like traditional pornography.

• Is it there to titillate and make the viewer feel good about themselves?
• Is it being shared to make the sharer feel good / not guilty about themselves?
• Is it there without the knowledge / understanding of the person being shown? (Compare some human child Inspiration Porn subjects with feel-good videos of animals) Consent is vital not only in sexual interactions!
• Is it there for You to look at Us, with the subtext of being glad not to be me?

That's Inspiration Porn. 

Pause for Breath

Taking a breather this month because work is very busy and I need to focus on that...

Splitting themes

I'm currently trying to think of a way to split themes within this blog. I have no desire to update multiple locations to discuss different things which interest me. This is a short post where I am listing the themes which I can see myself covering, and then subdivisions within that. It's not necessarily stuff I do already, but also things I have intended to write, or to think about.

• Self
• Things about my life, health, and that sort of stuff
• Anything I want to abstractly grumble about
• Medieval miscellany
• Research and thoughts
• Class / Seminar notes (general)
• Paternosters
• Death
• Testaments
• Material culture and trade in gems / beads
• Books, literacy, and reading
• Non-research interests
• PrePetrine Russia
• A.P. Chekhov
• Cleanliness and dirtiness in the high to late middle ages
• Medieval food - mostly eating thereof!
• Medievalisms and recreation
• Aristocratic households
• Marches and borders
• Languages & idiolects
• Conference reports
• Attendee reports
• Papers given by me
• Plans
• ASD / Aspie stuff
• Slightly different from "self" in that it is about the state of being Aspie rather than about my life
• Research comments
• "Doing X while Aspie" - comments on how it is to do mundane or common things while having an ASD/Asperger's diagnosis.
• Perseverations (mine)
• Trains
• Games
• Trees
• Costume & Sewing
• Hawks and Corvids
• Librarian / Books
• Information access
• How people get hold of (accurate) information
• How people find and use information
• What I am reading currently (sourced via Goodreads probably)
• LMS / LSP thoughts (me as Systems Librarian)
• Data, Metadata, and Indexing
• Tech
• New technology I'm using (hardware)
• Technology I'm using (software)
• Technology wishlists

Having a Laparoscopy Operation

OK, so I briefly touched on this earlier but I thought I'd write it out to try and think it through.

I was due to go in for a minor operation on the 14 December but due to winter pressures on the NHS the Trust decided to cancel all non-urgent operations to make more bed spaces in the Surgical Short Stay areas. I was caught up in that and mine was one of the ones cancelled.

Thoughts from that:

• I don't cope well with unexpected changes. I only found out shortly before I was due to head in and had a panic attack trying to figure out what I should do now about work. Luckily my boss is a good person who calmed me down, told me to have that day sick and to take the next as TOIL, and then come in as normal on the Monday.
• Winter pressure is to be expected. It sucks, but I'd prefer little old ladies who have fallen to have their hips put back together again, thanks very much! What isn't really acceptable is to allow departments to schedule surgery when you (Trust) expect to send out a cancel-all-operations order. Just don't book the damn operations, so we don't take unneeded leave, and the bed spaces are there. You can always ring someone up like you did in January to give them as "last minute cancellation" if you find out you have the capacity!
• The NHS needs better funding and to lost Hunt of the Rhyming Slang. And most of the leading MPs of the current day.

So... fast-forward to a few weeks later, and I was wondering what was happening about my operation re-scheduling. I spent a week or so ringing on and off to try to get hold of someone in the department I needed to find out what I should do, if anything. One Wednesday afternoon I was chatting to Mum as I walked in the door after work and decided to have a go then. To my surprise I got through, and gave over my hospital number etc.

"Can you come in tomorrow?"
"Err." *flustered* "I would have to check with work but I think so."
"Well we'd have to book it now, if you can't then..."
"No, no, I think I can. I'll check now and ring back if I can't but I'm sure I can." *panicking now*
"OK, that's great. Can you come in at 12:30 please?"
"Yes, no problem. Is it the same as on the previous instructions re food/drink?"
We clarified that, yes, I could have BLACK tea, and some toast before 07:30, and then nothing except water from then until 10am, when it went to nil.
"See you tomorrow."

One panicky phone call to my boss later, and I was packing my bag of things to take with me. Then rang TGO at work to let him know and also to persuade him that taking the day off work was pointless - I wasn't exactly going to be around and I figured I'd be unlikely to get home before 6 anyway. Various other phone calls to my older sister to sort out nephew collection duties as usually they come to us after school on a Thursday while she does marking etc.

There were then two more phone calls from the hospital:
1.
"I'm really sorry, I forgot to ask you before. Is there any chance you might be pregnant? You know we can't do the operation if there is any chance."
"Definitely no chance."
"That's great, see you tomorrow."
2.
"Have you had a pre-op?"
"A pre-op? What's that? I don't know."
Explained what the pre-op was
"No, I don't think so. I wasn't scheduled for one last time either though."
"Hmm, well we'd better do one just in case. Can you come in a bit earlier?"
"No problem. When were you thinking?"
"About 12ish would be fine"
"OK"

Early night and early up so I could finish breakfast before 07:30. As an aside, black tea is tolerable but I REALLY wouldn't choose it! Just before 08:00 the phone rang, with the withheld number again like the other calls from the hospital, so I panicked that they were cancelling.
"We do need to do a pre-operation and we can't go ahead without it..."
"I can come in now!" *panic* "I'm only around the corner in [local area]"
"Oh!" *relief-sounding voice* "Great! How soon can you get here? Can you get here for 08:30?"
"Um, yeah, OK, no problem"
"See you soon"

So panic stations! I'd walked about so Mum had been nearby able to hear when I was on the call. She'd just run a bath so I was pushed at it, Dad was summoned and told to ring a taxi now (road works between home and hospital meant she couldn't drop me AND get to the class she was teaching for 9am). Speed wash in the bath, grabbed some clothes, put things mentioned on the letter (pills, types of clothes, pads) in a bag, shoved in some books with a charger, tablet, and phone. Had some cash shoved at me by Dad and was bundled into a cab. Husband at this point is oblivious as he'd been dropped off at the station just before the hospital rang.

Got to the hospital without any problems, and went into the Surgical Short Stay Unit (SSSU) to find out where I was supposed to go for the pre-op. Pre-Op is in the bowels of the hospital, so I got down there in plenty of time. As there was almost no one else there I went almost straight in.
Pre-Op was:

• MRSA swab of nose
• MRSA swab of groin
• Height and weight
• Blood pressure
• "Do you have any allergies or intolerances?", version 1
• Confirmation of data, part 1

All done by 09:00. I wasn't sure what to do next, so I ambled back towards the SSSU catching Pokémon. I debated walking down to Tesco nearby to get the gym there, but was worried about whether I was expected to stay on site so I didn't. Hung around in the SSSU registration area for a while until someone spotted me. Explained why I was there and that I wasn't sure what to do now, but that I didn't really want to go home and come back - could I sit in the Day Room? Nurse toddled off and came back to say they could admit me now and I could just park up on my bed and read if I liked or have a nap. So I did!

I read Ashes of Honor, some more of Games Creatures Play, and then a good chunk of The King Must Die, plus I got caught up on Facebook and Twitter (well as much as one can say caught up with either of those). I would have played Pokémon but I was tantalisingly just out of reach of the nearest stop and low on balls.

The rest of the time I had a number of visits from various people including nurses, the surgeon, and the anaesthetist, all who asked me for my allergies/intolerances, date of birth, and address. I know why they do it (so they know they have the right patient with the right notes), but it's both boring and exasperating after a while. At about 16:30 I was given my oh-so-sexy support stockings and put into the gown to be wheeled down. As I was moving from one bed area to another we took all my stuff with me to go into a locker while I was in surgery.

I came around about 6ish I think, and sat up. Lady next to me had had "growths" removed and was very groggy, but I didn't feel too bad so I stayed sitting up all the way back to the Unit. They found some endometrium where it shouldn't be, and removed it. Hopefully things will be a little better now... I had to drink a ton of water once I was in recovery because they won't let you out until you pee. My bladder was happy to take about 2 pints before it would go, so I was stuck there until about 8pm.

Other slightly random thoughts:

• My anaesthetist was great and had a funky moustache. He agreed to gas me until I was under enough to not know there was a needle nearby. Good man!
• I have a slow release bladder - I was still able to pee at nearly 16:30 before I was wheeled down, despite having drunk nothing since I was admitted at 09:30... Bodies are weird!
• Gas is much nicer than injections but I was burping it for 2 days afterwards and it tastes BAD!
• Recovery is both fast and slow - healing was very quick and clean, but I am still pretty tired 2 weeks later. It also occasionally twinges. I'm told this is because healing starts at the skin and works inwards, so while the holes are closed up now, the insides are still stab wounded.

2017 - Life shenanigans

I haven't yet posted this year because I'm mostly thinking and not really DOING and I got attacked by that mean thing called Life... :)

Bad:
Politics
Operation scheduled for mid-December got cancelled shortly beforehand which messed with my Aspie

Middle:
I asked to see the local ASD specialists because I had some questions and because I had lost my diagnosis letter in the moved down here (I needed it for course reasons). I've ended up with a reassessment in February and I'm terrified they're going to take away my diagnosis. Illogical? Maybe. Real to me though.

Good:
Ended up with a last minute re-scheduling of my op just over a week ago. As in, Phone call at 15:50 to be in the following lunch time, and then altered at 07:30am to "how soon can you get in?"... More on that later.
Starting medication to hopefully kick my personal Plan A into action at last. 10 years in the planning on that one. No indications because I don't want to jinx anything!


Random:
I'm trying to work out what I want to do here, as in on this blog. I like the writing process because it's quite cathartic and no one else reads it! I'm half thinking of making it into streams and using two (or more) profiles to separate the different types if writing.

• Medieval research notes
• Life stuff - me, aspie,
• Librarian / book things

Hmm, not sure.

December - Planning for a New Year

Next year I will definitely be transferring to a new institution and starting again on a taught PG course. I attended one open day a week or so back, and am planning to attend another in the new year. Both are within an hour of home, so hopefully I'll be a lot less isolated than I was with my previous institution. Unfortunately I am not eligible for the Postgraduate Loans as I already have an MA - even though it's a "professional one". It's slightly irritating because I was ineligible for most types of funding when I took my original MA because it was classed as professional, and now I'm ineligible for the academic funding because said original MA is now too academic... ARGH!

Bloody typical! *sigh*

So, in practice that just means I'll continue part time.

When looking to go back to another more-local university I shortlisted 10 south-eastern institutions plus one near where TGO works. I don't really want to head back up there BUT it is a good university and a cheaper area to live, so... I put my inner-Aspie to work and have worked out a ranking for each institution and course based on a number of criteria.

Stage one: Identification

Seven institutions in and around London, with 10 courses that align with my academic interests;
One institution with two courses near TGO
Three general South-East institutions with six courses aligning. Some other south-eastern region institutions were not short-listed at this point due to accessibility (I don't drive) or lack of relevant courses.

Stage 2: Ranking

1. Course titles:
• Plain History couses were ranked lower than one that was either specifically "medieval" or which was designed as a Historical Research degree as I felt those would be of greater benefit to my future studies.
2. Course type:
• MA = 2 points, vs MRes = 1 point. This was because I felt I will benefit from more support at this stage.
3. Dissertation lengths:
• These were simply ranked by length, with a longer dissertation gaining more points because it usually reflected a lesser number of optional modules.
• A shorter dissertation but more modules I deemed equally beneficial as a longer dissertation with less optional modules, assuming suitable support within the department.
4. Compulsory modules:
• A specific "Research skills" module was ranked most highly, with thematic overview modules ranking second. Other compulsory modules weren't ranked as I see these as 'things that I must complete' in contrast to 'things I find most beneficial'. 
5. Optional modules:
• Optional modules were harder to rank, so I decided to award 2 points to any optional module that I felt would be directly relevant to any future research I undertake.
• Subsequent optional modules which would be useful in developing technique, contextual awareness, and so on, were given 1 point each.
6. Language support:
• I want a university that at minimum offers support and training in medieval Latin. Other relevant languages are a bonus, especially Middle English. Therefore Latin support and tuition was given 2 points, other relevant languages got 1, and irrelevant languages (to me) weren't noted.
7. Cost:
• Cost is always relevant, like it or not. Despite being mostly interested in part-time study, I ranked on full-time fees in part because not all institutions provided clear part-time fees.
• Costs were ranked inversely, meaning a £10k/per annum cost was 1 point, and a £1k per annum cost would be 10 points. I used decimals here because there is a lot of difference between a £5000/yr and a £5700/yr cost.

Following this I decided to add in some additional adjustments to rankings based on some extra criteria.

1. Part-time:
• Not all institutions were clear that they offered their courses with a part-time option. I ranked those which clearly stated the existence of any part-time options as +1.
  
  This fed into adjustment 2...
2. Tuition times:
• Offering part-time tuition is one thing, offering ACCESSIBLE part-time tuition is another thing entirely! Many institutions weren't clear on how their times would adjust to someone who needs to continue working, and were mostly adjusted to accommodate those who had more flexible outside demands.
• For 5 points, I ranked most highly those who offered evening tuition (one institution)
• For 3 points, I ranked second those who offered tuition adjusted to work patterns, e.g. on one day or on specific afternoons.
• This bias comes from my MA LIS, where Monday had most/all compulsory modules and optional modules on a rotating basis (i.e. Year 1 had 50% available, with the other 50% available on that day during Year 2). This meant that our part-timers had everything accessible on a day-release basis.
• If an employed person wants to take a course, it is easier to negotiate a specific work pattern with their employer (e.g. longer hours Tues - Fri, swapping Weds for Saturday, and so on) than needing 2 hours on Monday morning, and an early finish on Thursdays for Term 1, then Wednesdays in term 2, and so on.
• Those institutions who didn't specify, or which had timetables showing classes all across the times and days were ranked 0 as they were unhelpful to me. Some of these courses might have actually been available as a 3-point option, but they were really not helpful!
• Only two institutions got any points here. One who only offer evening tuition, and one who offer a "flexible study-pattern" option. That was depressing!
3. Palaeography
• One angle on my future research plans involves extensive palaeographical work. I therefore would prefer an institution that offers palaeographical training and support. Some institutions didn't offer a named Palaeography course, but did offer Manuscript Studies or Training, which I viewed as a lesser-but-still-good version of Palaeography.
• Palaeography courses were ranked +2, Manuscript studies courses were ranked +1, and courses without either got +0.

Stage 3: Results

Surprisingly, the course nearest to TGO's work got the highest rank, despite me not wanting to live there again. That was definite food for thought. They do offer part-time, I know from talking to past students that they are willing to be quite flexible on attendance (caused by working) providing you complete the work. They are also based within walking distance of the office I would have to transfer to.

There were four institutions and five courses which scored 25 points or more on my scale. Maximum points would have been 30-35 points depending on how long an optimal dissertation would be. I'll call these institutions B, M, R and U

M scored 27.5, having the best compulsory options, and second best optional modules. It offers palaeography and 2 languages but doesn't have optimal part-time study timings. Its fees are high.

B scored 27.4. Its compulsory options were a bit mediocre but it currently has some great and good optional modules. It offers both palaeography AND manuscript studies, but only Latin. It offers awesome tuition times as all its relevant classes are in the early evening. Its fees are moderate.

R scored 25.4 for one course and 25 for another (a third scored 22.5). It has good compulsory courses and solidly interesting and relevant optional modules. R offers palaeography and Latin, but no other languages and has an innovative flexible option allowing you to spread your course over more than two years. I have no idea how that would work in practice, so I will need to visit them soon to discuss how it would pan out for me. The fees are the best of the top courses.

U scored 25.2. U has less compulsory modules overall, but makes up by having the best optional modules on offer allowing a more customised course. It only offers manuscript studies not palaeography but offers many relevant languages in addition to Latin. Its tuition times sucked, but there is a part-time option. The main negative for U was the extremely high tuition fees. Removing tuition fees from consideration (not possible in reality!) would bump it up above both courses at R.

U and B have an additional advantage in that they are part of a wider network of institutions which sometimes permit sharing of modules BUT that would always be dependant on tuition times for me.

In all cases it was assumed that the options as advertised now would be available when I took the course. This is never guaranteed, of course!

November

I'm really not feeling in a good place mentally at present, so I'm going to leave the commentary for this month. On the up side, I just had a week and a half off work, and realised how much I'd pushed myself this year. I need to consciously work in breaks I think or I am going to break...

Pop in

This month is knuckle down to it month...

In real life:

Must lose more weight to be able to undergo a procedure - BMI has relationship with success rate, and I need this to be successful!
Two birthdays to deal with - little sister and eldest nephew - he's going to be 10, where the hell did the last decade go to?!
Bits and bobs of travelling for work
Sorting out new ID card and Railcard for uni - need to go to campus to get things signed (unless I've managed to get that all sorted at the end of September (unlikely but possible)
TGO down here for a week for work (Yay for him here, Boo for snoring!)

I'm currently seriously considering as to whether it would be better to revise and resubmit my MA English Literature thesis, or restart with a taught MA course in a history department. My research interests and thesis align far better as History although I am currently based within English Literature. I'm paying writing up fees to postpone this decision in the shortterm but I'll need to get on with the process ASAP if I am going to apply. Additionally, if I do this, I think that it would be better to chose a different institution that is more local to me. Being a distance learner is very isolating and I don't think that I operate at my best within those parameters. What this all means is that I've now got a spreadsheet of universities within about an hour of where I am based which teach within my research interests. I'm now scoring them! Aspie brain ftw...