Pastoral bliss

This one is going to be sort of a rant. It's about how the UK university system screws up pastoral care and disability rights so royally whilst pretending to do the right thing. It's a crap situation that I was fighting for years from within the system when I worked in the UK universities and a decade later it is still going strong. I could scream. In fact everyone SHOULD scream.
Let's do a tale of two students. Both have something wrong with them. In one case it's a disability. An invisible one. In the other case it's a sense of entitlement and the morality of a syphilitic mongoose.

Student A.
Student A has a very high opinion of themselves quite unjustified in terms of either their work ethic or their ability. They have experience in how to manipulate the system. Often this comes from either run ins with benefits agencies, indulgent parents, boarding schools or other manipulable entities.
Student A does minimal work during the year, is late for coursework with no contact for extension and does poorly in tutorials. When the exams are approaching Student A, who has carefully read the regulations, finds a reason which is hard to disprove to submit an Extenuating Circumstances form.
Reasons I have seen vary from stress, missing a bus, having a cold, death of grandmother(one student did this 5 times), pet going missing all the way through to boob job. No kidding.
They do poorly in the exam but get to retake with no consequences because of the form. One student I knew did this at 14 consecutive  exam dates.
They are unkillable because they know and abuse the system.

Student B
Student B has an invisible disability. Their doctor knows and they are coping with it but it limits available spoons. They perform pretty well through the year. Sometimes attendance varies. Sometimes they need more time on essays which they arrange with lecturers. They hit the exams and the stress makes their condition worse but they soldier on. They get an OK grade which is well below potential but a testament to their tenacity.
They had no idea that Extenuating Circumstances forms existed and because they are used to coping even if they had they probably think it applies only to people in car accidents not THEM.

So Student B gets shafted royally.
That's exactly how the system works folks. That's what happens time after time. Every exam board at a UK university knows it. They see it all the time. But they can't do much about it.

So what is broken here?
Simple answer is pastoral care. What used to happen and what should still happen is that each student gets a personal tutor who actually does their fucking job.
I used to have my tutees to tea once a week in my office. Give a student free cake and they always turn up. I asked them how they were.
Simple as that.
Doing that I caught 5 cases of undiagnosed dyslexia, one case of clinical depression and saw first hand the damage cfs/me can do (it's why I will get very mad at anyone who implies it's just yuppie flu. Killing mad).
I could tell my tutees to fill in the forms. Get them help. And when it came round to exam boards get up on my hind feet and defend them like a lioness defending it's cub.
But now the common experience is that personal tutors see tutees only once a year. Students often get a new one each year. Some even forget who they are.

The personal tutors are overworked yes. There is no credit for pastoral work yes.

But for the cost of different company at a tea break you were probably having anyway and at most 30 boxes of Mr Kipling you are failing your students and ensuring that the ones with invisible disabilities, the ones the system was written for are YET AGAIN being fucked up the wrong un with a very large pipe wrench.

I have no time for academics who say they can't fit it in. Your priorities are wrong. You are contributing to a bigoted system and you need to change. Do it or resign.

I saw this morning mornings minion

Well, the GP I suppose counts.
It was one of those quick visits to get drugs and paperwork, but where i really need to talk more at another point but we both know we currently need other things, like the psych assessment, to happen first.  Normally my GP visits run like an episode of colombo, with me constantly turning round as i am nearly to the door, pulling a scrap of notepaper out of my pocket and saying "theres just one more thing ...".  Ask any doctor, the most important thing comes up last.  This time it was like something particularly pensive from Harold Pinter.  So much left unsaid.  He asked how i was and i said better, but its llike a skin on a rice pudding.  It is all there waiting for the skin to break.
I sometimes wonder if that is what I am supposed to be aiming at. Just forming a skin over the cess pit and being careful where I step.  Is that normality, just pushing down the misery?
I suppose some catchup is in order.  After Tagine day we managed to get the family together to do an outing to Jimmy's Farm where they were having a science day.  It was enjoyable enough for a small attraction event.  I met some people from Coventry Uni who were struggling a bit with a TLC setup and got chatting, much to foal and mrsinky's mortification.  One of the things about my calling is how multidisciplinary it is.  I am a renaissance horse in a way and so I can drop into a lot of science setups and banter quite well.  For some reason this never goes down well with the distaff side.  We had a day where we didnt shout and we didnt fall out.  And we met the worlds least convincing emu.

That has to count as a win.

Also one of the lds at the gym apologised for mr blondee twats behaviour.

However other things lurk on the horizon.  Old fans will be aware that my typing is often a little random.  This was something \i always blamed on the opiates, which I was taking  a fair amount of.  However  I have not been taking the opiates for some while...and it is getting worse.  Others noticed previously it was always the same type of error- one spacce difference on the keyboard.  It is the same thing.  Typing like this on my laptop I can do most things, though errors pop up when i think i have touched a key but havent.  on my phone it is almost impossible.  My guitar playing...well its sometimes worse sometimes ok so cant really say.

I talked to the optician and she said its not me guv, so that leaves neurological.

the most pleasant option are things like vitamin B deficiency and also the old favourite eds which is linked to proprioceptive deficit.

the other options are....well hypochondriac.  I shall not google.  Or not again anyway :(

I am an old worry wart at times.

It is very frustrating though.  twitter is v difficult as it is.

Same little shit diffrrent day

You remember Mr Blonde Twat who thinks disabled people shouldnt use gyms?
Well he parked in the disabled spaces again today.
So that intervention worked!

Then I curse you, in the name of all nature. You are a twisted abhorrence.

Today sucked.

There are many causes of it sucking but one more than any other.
I had an ablism incident at David Lloyd Ipswich.

You may remember that I had problems here before with people parking like complete arses and the effete management doing nowt?  Well to be fair the new manager in place there has put cones down and actually done something about it.  Kudos. When I was ranting to him I explained that part of the issue was that people did not believe that disabled people use the facilities, despite daytime being all about the crips.  I said we needed an education campaign.  Something showing how inclusive David Lloyd can be.  Something affirming that disabled people are members like any others.

He said that had to come from above.  Well David Lloyd lts see some action.  Here is why.

Today I went to David Lloyd Ipswich in order to do my physio exercises, as discussed here.  I parked in the disabled spaces as normal and then fiddled a bit with the radio which is a bit wonky.  As I was doing so a car, pictured, pulled up next to me. Containing the gentleman pictured.  Picture taken in a public place, actually he even posed for it.

I asked him if he held a blue badge as he was parked in a disabled space.

His answer was that no he  had not.  But it was a gym.

I said disabled people use the gym.

His answer was that if they needed to park that close to the door they cant and shouldn't use the gym. That there was too much provision for them and it wasn't necessary because as he said, disabled people shouldn't use the gym.

I was appalled at such naked bigotry and, well, hate speech.

I reported this to the duty manager and she tried to get him to move his car.  and failed.  But a note has been made on his account.

But the point here is twofold.  Firstly this illustrates the ablism at places like this.  The idea that the disabled cannot use the space despite the fact they use it often.  This is largely because in all promotional literature David Lloyd is portrayed only by fit and able people.  The disabled are not good enough for their image.  Come on David Lloyd pull your socks up.

Secondly if this exchange had been about, say, black people instead of disabled people he would be banned, I suspect.  This hate speech is not acceptable.

I am calling on David Lloyd to take a lead here.  Lets have some representation of your daytime clientèle.  We are older, less fit and  less abled.  But we get a great deal from using the facilities for which we pay and should expect more from you.

Some people make me want to fling dung...

There are, I am told, lovely people out there.
I suspect the reason I tend not to meet them is something to do with the circles I move in.

However my life is top full of fools of one description or another.  I made the mistake of ordering online items for foal.  This instantly got me into a deal of trouble because of course the delivery bloke came when I was out, being out a lot is the norm.  Because out is less killy.

They left one of those cheery notes:
We tried to deliver your parcel.  However you decided to have a life.  We are therefore holding your parcel hostage at the local Post Office. If you do not collect it within 14 days We will cut off it's fingers and post them to you one by one.

So this morning I went into Claydon Post Office.  I had the ransome note.with me.  So I go to the counter and present the note, along with my driving license which is the best picture ID I had with me. License or Licence, I can never remember...

Anyhoo my FuhrerAusweiss is Swiss.  I had to convert it becuse of residence.  My primary residence is in Switzerland although I maintain dual residency.  So I hand it over, it having my name and picture on it, and say the address is my swiss one but state the delivery address.

I then have the most surreal conversation.  The woman behind the counter says:
"What is this?"
It is, as it says on it, a Swiss driving licence, allowing me to drive and yodel in all Cantons and complying with European regulations
"Why haven't you changed it?"
It isnt out of date
" But you must change it to drive here"
No. Its complicated but unless I drive for more than 6 months at a stretch I pretty much don't, as long as my residency status remains
"Having an incorrect adress on a license is an offence.  I will have to report you.  its a £1000 fine"
The address is not incorrect.  It is my Swiss address. Report anything you like.  I will report you to the post office for being a jumped up little hitler.

This case is extreme but I realise my life is full of shit like this.  I have people telling me "what you need to do for joints is eat seaweed/climb mountains/shag a virgin/take orange juice anally/rub winstons foot."
I have people starting sentences with "you dont want x/y/z"

What the fuck makes people decide they know all about a subject?  I have had stewardesses tell me I shouldnt fly, gym instructors tell me I shouldnt do physio.....

I think the thing is a hangover of that thoroughly evil greek tag mens sana in corpore sano.
The greeks merely thought it an ideal to strive towards.  But people now look at it as if your corpore is not sano you are a cretin to be ordered around.

so fuck you, woman in claydon post office.  I hope your vile sweater snags in a franking machine and rips your tits off.

Zoodlewurdle

I am so tired of blogging about my health. It must be very boring for you, dear imaginary reader. I imagine you sitting there thinking "seriously Inky get a life" as you gently rub cocoa butter into your exposed skin, sipping a dirty martini from a chalice carved from an alicorn.
Tomorrow I am seeing my doctor. This poor guy has had to put up with me being his patient for a looong time and you can see his face fall as I walk in.
I have made a list to hand over as I walk in. This allows him control I suppose. I think there are people who visit their GP without a side of A4 close written as a list.
Just to give some insight here it is.

Joint problems.
-spontaneous sublux of hip and shoulder unreduced after 3 weeks

Swollen glands
-submaxillary glands swollen for 6 months. Painfull.

Depression
- suicidal ideation. Active planning of suicide. Anhedonia. Crying. Hopelessness

Fungal infections

- fungal nail infection more than 2 years resists treatment
- hair loss varied regions may be fungal

Retinal heamorrhage

- optician noticed yesterday
- increased clotting times in general

Loose skin

- following weight loss. Very hard to care for. Denotivational.

I summarise a bit for clarity. But in all thsts enough. I wonder what he will pick first? My money is on the depression.

I have decided my next job will be as a magic unicorn herder.

Oddly the tennis player they named it after had crap service too...

This may come as a surprise to the able bodied but an awful lot of us cripples use sports centres. In fact in terms of numbers and usage it's a thriving market share.
Why is this? Well many people who are retired or on benefits get cheap memberships and us cripples can even get them prescribed. Its a convivial place to go ....and of course there is physio.
To those who have only sprained the odd ankle physio is that annoying stuff you do 30mins a week with the naggy person and forget to do in between.   For us zebras physio is the only tool we have to fight our illness. My full physio regime is 2hrs per day of gym. If i am rushed I have a 1hr. The recommendation is even if you can only do 10 mins do it.
So you see the gym is a second home. Over here I use the David Lloyd Leisure centre in Ipswich. This is definitely up the crunchy meusli and range rover end of the market, for instance they advertise taking the advice of nutritionists( who are unqualified and unregulated profit mongers. You would be better asking a cat ) in order to provide a paleo diet (a diet myth based on little to no evidence, heavy on the naturalistic fallacy) but it is convenient. You do pay rather a lot for the use of their facilities. But the facilities are good. I mean fair dos the equipment is clean and well maintained and theres lots of it. No complaints about that at all.
But...
You knew there was a but right?
The clientelle in their yuppie trucks cannot park for toffee. The car park fills up at the time of little johnnies tennis lesson. But only near the door. The far reaches are often empty. Near the door is where the disabled spaces are. The photo shows what normally happens. Some lazy sod parks across the pavement adjacent to the disabled parking and goes off to pilates.
Might not sound like much but that pavement allows us lames to hobble along in safety. We need it. All of it.
So obviously when it happens I complain. And complain
And complain.
And tweet. I mean I even joined twitter ( thats @Inky_r folks) to complain after the 10th complaint resulted in no change.
The response is an email sent to the wrong account  and which started off by using my forename despite me not knowing them..hint to young people this is extremely rude. I am Dr Tatus till i tell you different...which says:

" Thank you for your comment card regarding parking. I have tried to call you but have been unable to make contact hence my e-mail.

 

We are aware that some members choose to park in unacceptable places such as on the pathways and under the oak tree. If we are aware who these members are we do address it with them. Previously we did tannoh the car number plate but of course they knew why we were trying to contact them and ignored the call. We have also put notices on offending cars but if you are going to park there in the first place a notice will not change the behaviour.

 

The most frustrating thing is that often there are car spaces but members choose to park as close to the club as possible. Recently we have had staff in the car park and this does work as a deterrent but is not always possible with a busy club.

 

Please be reassured that we are aware of the problem and the frustration it causes with members. I will speak to the management team and see if we can provide a more regular presence in the car park.

 

I will look for you in the club and then hopefully try and have a further conversation but for the meantime I hope this advises you of some of the actions that we have tried to resolve the problem

"
Now this sounds like an attempt to do stuff doesnt it? Except of course it isnt really looking at the problem. It's creative helplessness. We cannot change their behaviour...

Oh yes you can. Look at it this way, if i decided I was too lazy to go to the loo and repeatedly defecated in the toddler pool I would be guilty of misconduct that denied other members use of the facilities. I would be banned, I suspect, or have my membership suspended. So why is it when lazy middle aged women (observation not misogyny. Generally step or boxercise classes) do exactly the same that there is no effort to make them face consequences. The answer is that the able bodied, disproportionately young staff do not see it as more than an irritation. It is a low priority.

I would say that it appears that David Lloyd Leisure is oblivious to the needs of disabled members and deprioritises them. I say appears, as I have limited data. I do find their employees seem to come from a very limited demographic and would like to see their figures on equal opportunities. I have never seen a receptionist with a mild limp let alone in a wheelchair, and their managers normally have sports science graduate/pro football dropout tattooed on the underside of their identical eyelids. Lets see if we can represent the disabled community a bit? Or would that interfere with their cosy Daily Mail existence in the gated community of the Worried Well. The varied Gluten Free menu options do go nicely with the Social Conscience Free behavioural options after all.

Just as with Bloombergs revamp of London City Airport I suspect that no-one with a disability has ever been asked about operations let alone had an influence on them.

So what would I do?

Next time someone parks there follow them to the car. Ask to see their membership card. Take the number. Ban them.

Send a members email out with education on why disabled apaces are important. Why these places mean so much to us. How much abusing the spaces hurts us. And telling members banning will ensue. Dont just leaflet the bad cars, tell everyone. Run a positive campaign integrating disabled members. Get paralympians in to visit the childrens clubs and talk.

If that doesnt work put nerve gas in the boxercise dummies.

Come fly with me...

Apologies for the long absence.  I have had speaking engagements, a concussion, 2 suicide attempts and an appraisal to deal with.  I shall try to betterise.

I am one of those people you stare it in airport queues in jealousy.  Nay not for my good looks or enormous genitals but because i have a silver frequent flier card which zooms me past queues.  I earned this by flying far too much between London and Zürich on BA.

I also, particularly these days, get zoomed because I am in a wheelchair much of the time.

Most airlines will offer wheelchair assistance of one kind or another.  In fact they buy it from the airports and the airports subcontract it from companies and the companies hire the staff.  Just the kind of arrangement that Mrs Thatcher put into the NHS and which turned our hospitals into the vibrant infective MRSA plague zones we know and love.  Because in this model no-one, and i mean no-one is responsible for anything.

The first point to ponder is this: airports are not big investors in wheelchair stocks.  The chairs are crap.  I have become something of a wheelchair fancier of late and i can say the best loaner wheelchairs I have found are the ones used by the Science Museum in London.  Seriously awesome things.  The worst ones are the rebadged shopping trolleys dredged out of a canal and operated in London City Airport.  Being wheeled around in those has caused me pain and injury before and generally now I will try to use my own chair when possible.

It is not just the injury risk.  lets say you turn up to an airport and ask for assistance from the check in on ( never do this).  It will take up to an hour to turn up.  They will then take you straight to the gate.  you will not get a chance to shop or do anything else because you are an unworthy cripple and should know your place.  Even should they turn up on time you will be in a transport chair not a self propelled chair so you cant move it anyway.  And often they will dump you then disappear off with the chair anyway.  I once spent 2 hrs marooned in a seat in the BA lounge in Tokyo Narita because this happened.  The service is overused and understaffed and customer wishes are way down the list.

London City Airport takes this a little further.  They have just revamped their terminal building.  For those who do not know it City is a small airport but very good for European flights.  It has a couple of shops and cafes and it has just upscaled the facilities with money from Bloomberg.  Bloomberg should be thoroughly ashamed of themselves for the result.  What they have done is ceate a facility that is impossible to access if you are chairbound.  It is one of the worst pieces of discriminatory developement I have ever seen and the company should be pilloried until they revise it.  Essentially you can access everything on legs but they have positioned chairs, tables etc so that wheelchairs are excluded from use of the restaurant, tables block access to the disabled loo, charging sockets have seats in front of them etc etc.  If one person had used it one time in a chair during design it would not have gone ahead,  but there you go.

City is not alone.  Heathrow Terminal 5 is a similar disgrace in places.  Ok the open thoroughfares are alright but the terminal staff selectively use disabled loos even when no queue is in the normal ones and get shirty when challenged.  The South lounge is full of nice comfy chairs etc but these are arranged in order to ensure cripples cant mix with real people.  Service counters have items arranged at the back out of reach.  The customer support staff talk down to you like nobodies business and have little grasp of reality.  One of them, sitting right next to a tannoy mike seriously wanted to indicate where I would be sitting for 5 hrs so she could see me.  The idea that I might want to roll around a bit and that she could use the Magic Talking Stick to find me was very alien.

But lets say that you make it to the gate on time...  What should happen is that you pre-board along with the other priority passengers.  This means they let you through early and then wheel you down.  You then take a seat on the empty plane.  Why do you go in first?  Well two reasons, firstly disabled people often have hand baggage that they really need mid flight such as meds, walking sticks, pillows etc.  If you get on with everyone else the stowage space gets full quickly.  If I cannot reach my walking stick mid flight I am a danger to myself and others and may very well piss in my seat, out of revenge if not need.  The other reason is about dignity.  would you like to hobble slowly down the aisle with 150 people you do not know all staring at you wondering why you are delaying them?

On Saturday that is exactly what the woman on duty at gate A22 terminal 5 on the 1305 to Zürich wanted me to do.  Simply because she could not be bothered to fill in a luggage form ( the lack of which was BA's fault incidentally) she wanted me to wait until after boarding and hobble onto a packed plane as a free freakshow for the masses.  I did manage to express my displeasure without actually telling her to get fucked but the get fucked was clearly implied.

Now pre-boarding is also offered to small children in pushchairs etc.  We all trundle down the ramp leaving our chariots at the bottom next to the plane door.  My chariot is known as Davros and I am considering fitting Boudicca style blades.  Now BA gives you an orange tag to attach to such things which tells the baggage pixies to return it to the plane door at your destination.  People on American Airlines would know this as Valet bag service.  My experience is that pushchairs automatically get this service.  But for wheelchairs you have to fight very very hard.  In Dallas Fort Worth on Friday last I had a flight which was delayed, then had its boarding moved up without announcement.  I got to the gate as preboarders were being lined up and asked the very artificial blonde lady for my wheelchair to return to the plane door.
She said "you mean the baggage carousel".
I said no, I meant the plane door.
"Its better if you reclaim it afterwards"
Better for who?  Give me the orange tags please
"these are for pushchairs"
No, they have a picture of both wheelchairs and pushchairs on.  furthermore it is BA policy that this is my right.  Also this flight will be very much more delayed because no-one is getting on till you comply with my reasonable request.
"I will have to ask my supervisor if we can do that"

Eventually she complied.  because she had to.  I was damned certain I would see her sacked if she didnt.  But this is how check-in staff bully you into things.  needless to say staff in Narita are worse- they attach the tag but then wrap the entire chair in bubble wrap, tie string around it and put it in the wrong hold so only the pilot can find it 1 hr after landing.

American airlines twice did an assistance fail this weekend.  At San Antonio the terminal is rather taller than an MD80.  So when the plane attaches itself the TerminalPenis has to slope downwards.  Now slopes are a nightmare in a chair.  My arms are pretty strong but fairly gentle inclines are tricky.  It took me 10 minutes to explain to the gatemonkey that although it was a ramp I needed someone to push me down or i was quite likely to splat at high speed into the side of the plane.

I may write up the whole journey in another post but before i go this time heres a final BA fail.  I have a medicalert tag, and I generally start a long haul flight by telling the service crew where it is and also asking them to wake me before bringing any trolleys through.  this is because if my muscles are relaxed a blow from a trolley can dislocate all my joints.  Fairly simple conversation, huh?  Here is my tag, Please wake me before trolleys.
When i said this to the lady on the 1745 Fort Worth to Heathrow i got in order "should you be sitting there?" ( yes i need to move around so an aisle is sadly necessary) "I dont see how we can help" and, my favourite "Well you shouldnt be flying then, are you sure you have medical clearance?".

Just one of those bigotted interactions that makes life so much better.

Lovely refit...now do it again.

I use London City Airport a good deal. Its not the kind of airport you go to for the shopping, it has always been pretty functional but it works and it is efficient, so in my book it wins.

But there is nothing so good that a marketing twat cannot mess it up.

I have recently been spending more of my time in a wheelchair. It comes as a shock to people when i get out and walk around but actually mkst people in a wheelchair can probably walk a bit. With me my condition means i cant walk for long and standing still hurts like crazy. So i have given up on walking in airports. This weekend I am using city in a chair for the first time.

City has just had an internal refit sponsored by Bloomberg. There are lots of plug sockets, audio links, usb charger sockets etc. Of course there are none of those for people in wheelchairs but everyone knows cripples cant think or use computers so thats alright.

There are pleasant sitting areas, with low tables to gather round and chat. All of these are walled off with a string of bar tables and bar stools set just far enough apart to exclude a wheelchair.  So if you want to rest your drink ln something it has to be at head height.  But at least it stops the deformed wheely mutants from bothering the normal folk when they are trying to relax.

One of the really good things about city airports lounge was the view over the runway. You could sit and sip coffee and watch the planes. Now you have a massive wall of bloomberg info blocking the view from half of the room, and the other half is accessed by passageways so tight that you fear to go down them with a wheelchair because you will not be able to turn and come back, and if anyone has left a bag there you are stuffed.

City are trying to maximise the customer experience, and lets be clear there is nothing wrong with anything they have done in principle.  But it is very clear that the designer gave no thought at all to anyone with mobility problems. And in fact they are trying to make sure they do not clutter up the place by coming back.

It has to be said the security staff and check in folk were very well trained, professional and lovely.  But it comes to something when the highpoint of an airport trip is the body search.

I hope someone from city or bloomberg reads this. They need to.