My Diary of Insufficient Support – Day 0

Hello Internet!

I am being sent home from hospital tomorrow without any extra PA home support hours. So I’m going to document daily life recovering from surgery without sufficient support at home.

The video is over 6 minutes long, and I will return someday to type up what I said. In the meantime, if anyone feels inclined to do that for me, then please message me, you beautiful human!

Until tomorrow…

Click here to view video on YouTube

*** UPDATE ***

The stupendous Kelly managed a transcription which is the pinned comment on YouTube. I think it was automated, so here’s a slightly tidied (and punctuated!) version:

hello Internet! A

pologies for the weird

lighting but I’m in a hospital ward in Sligo University Hospital. It’s my last night here; I’m being sent home tomorrow, after having some pretty straightforward back surgery nearly two weeks ago. I could have gone home a week ago, but we were waiting to hear from the manager of Physical and Sensory Disability Services for the Northwest, to see about an application for extra Personal Assistance home support hours for the recovery period when I got back from this surgery. The surgery was originally scheduled for the beginning of February, and prior to that, with my local service provider, LAPWD, we let the manager, Joanna McMorrow, know that this surgery was going to happen; that I would need extra PA support once I came out of the hospital. Apparently, at one of the monthly planning meetings, she said, “Yes, we’ll arrange that for you”.

So, over the course of this last week, nurses here at the orthopedic unit have been trying to contact joanna McMorrow; sometimes they were ringing several times a day, they were sending emails, they were sending in paperwork – because they didn’t want to send me home without having sufficient support, so that I could survive.

Now, I’ve just had the back surgery, but that is in the context of having a long-term chronic pain condition, since 2007, that has significantly worsened over the intervening 12 years. It’s related to soft tissue problems, unstable joints and hypermobility, which hasn’t yet properly been diagnosed. and other Zebras out there will know which diagnosis I’m talking about not having. I use a wheelchair for getting out of my own house. Although with the drop of mobility that I’ve had over the last couple of years, I will be getting a lightweight manual wheelchair to use within my own house. But even that’s going to be restricted because it’s a small house. That’s arriving on may the 14th.

I’m also pretty much blind, which a lot of people don’t necessarily take into account, especially not when they see the wheelchair. I use a guide dog, who has also been trained as a mobility assistance dog by IGDB, the Irish Guide Dogs for the Blind. I can’t read any print. Basically, in order to leave my own front door, I need to have the power chair and the guide dog. In order to function at home, I need to have Personal Assistance support for meals, cleaning, including washing my own hair, laundry, paperwork, filing… most things on most days I could use PA support.

I’ve had 15 hours of PA support for the last ten years, or maybe even more. Prior to that, I had 10 hours per week of support, and that was when I was, if you like, only visually impaired, not mobility impaired. With that 10 hours, and ambulatory mobility, I was able to be self-employed, running drama-based workshops, educational and arts-based workshops, as well as doing my own research into early Irish literature – which I still do some work on. (On Story Archaeology, which you can look up and subscribe to.)

I’m telling you all this because I haven’t been given any extra hours. I’ve been told to rearrange my existing hours, yet again. This is about the third time that I’ve applied for extra hours, and been told to rearrange my existing hours.

So the way it’s going to work is that I’ll be getting one hour of support each morning, and then one further hour each afternoon, and then I’ll have a spare hour somewhere in the week. I don’t know how I’m going to manage on that, but what I’m going to do is try and furnish you with daily reports, so that you can see how insufficient that is; and also maybe get a bit of insight into daily life with multiple disabilities; and how available support systems for somebody in my position are really falling so far short of the mark.

So I will leave it there for this evening, this being Sunday

the 5th of May. So tomorrow I will be going home. I’ve already ordered my shopping online, and my local supermarket has very kindly said that they can do the picking and delivery on a bank holiday Monday – because it’s me, because I’m a long-term customer of theirs. So big shout out to Glancy’s Supervalu of Carrick on Shannon! This is not a sponsored message.

I will check in with you tomorrow after I’ve had chats with at least one of my existing PAs, who’s going to be losing, I reckon, more than 50% of her current income, possibly having an increase in her travel expenses because of this rearrangement.

So wish me luck for the journey home tomorrow.

I will check in with you, O Internet of People, in 24 hours or so. Goodnight.

Local Coverage – A Small Step toward World Domination

Here’s a quick interview I did on local radio station, Ocean FM, for World Sight Day, Thursday 10th October. My less-than-15-minutes starts around 42 minutes into the show.

https://soundcloud.com/oceanfm/north-west-today-thurs-10th#t=42:00

Free Travel!!!!!!!!!! (terms and conditions apply)

In Ireland, people on various state supports are entitled to a Free Travel pass for public transport.  That’s great – and a scheme I think should be spread throughout the EU.  At least, it would be great if not for a few hiccups…

This evening, I arrived at Carrick on Shannon train station, intending to go to Sligo for a NW LGBT Pride meeting.  Now, due to the train timetable, I was due to arrive in Sligo 10 minutes after the meeting was due to start, and I was facing having to find a decent wheelchair accessible taxi once I got to Sligo so that I’d have a chance to get to the meeting before it ended.  But one hurdle at a time…

As usual, the relevant part of Carrick train station was closed.  This turns the station into a platform with a bit of shelter from the rain.  No access to the toilets, no facility to get a ticket before getting onto the train, no possibility of making enquires.  And no one to unlock the little shed where they keep the wheelchair ramp.  But nothing unexpected there – we can’t expect Iarnróid Éireann to pay station masters sufficiently so that they turn up for 10 minutes or so every couple of hours.  I’m sure the station masters have plenty of other essential jobs to be doing…

The next step was a phonecall.  Now usually, I’m heading to Dublin, and I ring the Information Desk at Connelly Station.  This used to work fine, but I think there’s been some kind of change of personnel.  I’ve rung up a number of times lately and said; “Hello.  I’m a wheelchair user, and I’m getting the [insert time here] train from Carrick on Shannon to Dublin.  Could you contact the train to let them know I need a ramp to get onto the train?”  That used to be enough.  More recently, though, I’ve got responses like; “Ok……………….” or “You have to ring Carrick train station” or “What do you want me to do?”.  It can take a bit of convincing and repetition to get these staff members to make one simple call.  In fact, it makes no sense to expect us to call the particular train station we’re travelling from or to on a particular day.  Would we expect a tourist to magically have this information?  Indeed, I’m no tourist, but I don’t have the number for Sligo station in my phone.  So I rang the Iarnróid Éireann customer information line, and was on hold for about 10 minutes.

When a human being finally came onto the line, I gave the usual patter: “Hello.  I’m a wheelchair user and I want to get the train from Carrick on Shannon to Sligo.  I’m at Carrick station now and there’s no-one here.  Can you call the train to let them know I need a ramp to get on board?”  As usual, I immediately had to repeat this – I don’t think people listen to the first part of what I say, and are clearly incapable of deducing that I’m a wheelchair user from the request for a ramp.  When the person on the other end of the line finally understood my simple request, he seemed unsure of why I was asking him.  He commented that I should book several hours in advance.  Now, when I started using a wheelchair, I tried to do this.  The response was either; “Call us back closer to the time”, or “Call the train station you’re travelling from”.  That’s when I saved the direct phone number to the Connelly Station information desk to my phone, and why I gave up following the “official” guidelines.  Besides which, there is usually a ramp at the station itself and on the train – that’s how they get the tea trolley on board.

When I explained to this guy that there was no point ever trying to ring Carrick and that I didn’t have the number for Sligo, he still seemed reluctant to take any action.  I asked if he could call the train, and he said “I’ll see what I can do”, which doesn’t inspire great confidence.  He was let off the hook by the train pulling into the station at that moment, as he said, “Someone on the train will probably help you.”  Great.  Thanks.

The guys (and gals!) who work on the train itself between Dublin and Sligo are fantastic, and they know me well by now.  Shortly after the train pulled in, three guys, including the train driver, were on the platform to sort me out.  They went up and down the train to find out where the ramp was stashed, but to no avail.  I commented that the ramp was used to get the trolley on board, but apparently the ramp had been left behind at another station.  The lads then got on the phone to raise the elusive station manager – no joy.  It started to piss with rain, a serious tropical downpour, and the lads conferred about what we should do. Pretty immediately, they offered to order a taxi for me, saying that the previous week there was someone at Boyle station who had to get a taxi to Dublin, all paid for by IÉ.  It was coming up to 15 minutes after the train was supposed to leave, and I was dubious of being able to get an accessible taxi at that time of the evening.  It could have been up to an hour waiting on the train platform, followed by an arduous journey in a taxi without the snack food and tea I was depending on getting from the infamous tea trolley.  So I declined their offer, promising to write and e-mail of complaint, waited for the rain to abate and wended my way home.

This is far from the worst train travel experience I’ve had in the last 6 months.  One evening, getting the last train from Carrick to Dublin, it was the usual scenario of no-one home at Carrick station.  When the train pulled in, I was waiting a while for a ticket inspector to emerge.  Finally, the driver himself came out, as there was NO OTHER STAFF MEMBER on the train.  He and another passenger found the ramp, got it out and put it in front of the train door.  In hindsight, I was a little uncertain of the ramp’s stability, but didn’t say anything.  [I tend to operate on the “passing as blind” basis in these situations: if I “give away” that I have some sight, then I won’t get the assistance I need to deal with my visual impairment.  And it’s come to my attention that using a wheelchair tends to trump having a guide-dog: it was only when the staff at the Hotel Isaacs in Dublin offered me assistance based on the visual impairment that I realised how little of that support I get these days.]  So I started up the ramp.  When my front wheels landed on the train, the back wheels shot the ramp out from under me and landed on the platform.  It turns out that these ramps have a strip of grippy stuff at the end to hold the top edge of the ramp in place, but it only has it on one side.  The ramp had been put on the wrong way around.  How was the poor train driver to know this?  Is it so hard to design a ramp that works equally well whichever way round it is?  So I was sitting half on the train and half on the platform, taking a few moments to be thankful that Carrick is NOT one of the many stations around the country with a yawning chasm of doom between the train and the platform.  The driver and the helpful passenger somehow managed to lift the heavy back end of my chair and enable me to get all the way into the train, even though at the time I didn’t want them to touch the chair.  In  power chair, you have a low centre of gravity, and an assistant can’t help to push you unless the motor is disengaged, so it’s rare that someone else pushing or lifting can be of any help.  And my concern is that someone rushes to help and then I drive over and break their foot, or they break their back trying to manoeuvre the unweildy bulk that is the chair.  My usual comment is: “I’m not going to share the chair!”

That incident left me quite shaken, and since then, whenever a ramp is put down for me, I ask someone to put their foot on the bottom to keep it steady.  But that’s not actually the worst experience of the last six months.

The DART Incident

My oldest friend in the world got married earlier this year.  For her hen night, afternoon tea was arranged at a posh hotel in Killiney the Saturday after St. Patrick’s Day.  This worked well for me, as I was to be in Dublin to go to Áras an Úachtaráin on Paddy’s Day itself.  Getting there was a whole ‘nother story…

I was staying at Hotel Isaacs right beside Busáras, where I was treated really well by the hotel staff as well as the restaurant.  The former were delighted that my assistance dog was called Isauq like their hotel; and the latter were fascinated by a dog enjoying crunchy carrots, on one occasion delivered in person by the manager.  It seemed simplicity itself to get the DART from Connelly station across the road to Killiney station, but I still rang my pals at the Connelly info desk to be sure to be sure.  I got the usual “Sure, just come over to the desk when you get here.”  Which I did.

Now, there was some big match on that day, and Connelly was pretty busy, but that’s not unusual for a city centre station on a Saturday.  I went to the desk, repeated my request, and was led over to the DART platform and successfully deposited on the train.  All well and good.

The train pulled into Killiney station, which I was actually aware of since they’ve finally got audio announcements on the DART (they didn’t for years – a real pain for VIPs!).  I made my way to the carriage doors, pressed the button and the doors slid open.  I sat and waited for someone to come with a ramp.  Nothing happened.  I looked down at the platform, six inches away from me, but utterly impossible to get to.  The doors started to close.  I pressed the “Open” button repeatedly, but with no effect.  The doors slid closed in front of my face and the train pulled away again.  “Ok,” I thought to myself.  “We’re not far from the terminus at Bray.  I’ll get off there, make a complaint and get the next DART back to Killiney.”

The DART pulled into Bray, and the train emptied its passengers.  I waited by the door again.  Again, I looked at the platform immediately in front of me, that might as well have been 20 miles away.  The doors started to close again.  I repeated the futile button pushing, probably saying “No! No! No!”, and started to shake and cry.  The DART pulled away again, then stopped a short istance from the station, and went silent.  I lit a cigarette and called the Connelly information desk again.  I did my best to explain the situation, although I’m pretty sure I used the phrase “I don’t know what the fuck I’m supposed to do.”  I spotted a staff member walking past the dormant train, but he didn’t seem to notice me.  Connelly said they’d contact Bray station and get me sorted out.  Shortly after that, the driver of the DART came back and apologised to me profusely. He told me that a passenger who’d got off at Bray told them I was still on board.  The “system” [a term I use quite loosely here] is that whover puts you on the DART tells the driver where you’re going and whereabouts on the train you are.  No one had told this driver I was there.  He told me to stay on board, that he’d be returning to Bray shortly, and that he did.  At Bray, other staff members came to talk to me.  They were furious that they hadn’t been told I was on the train.  They also told me that there was no staff at Killiney station, and that the best thing would be to get off at Shankill and they’d get me a taxi to Killiney

At Shankill, I finally got off the train.  The station master called for an accessible taxi for me, which only took an hour to arrive.  Throughout this time, I was also calling my friends at the hen party, who were also trying to find a taxi to get me there.  The taxi driver, when he arrived, was genuinely helpful and sympathetic: he was also the first taxi driver I’ve had who bothered to tie the chair down in the back of the taxi.

I had a great evening wit my friends, although the hotel itself was a bit of an access nightmare, with weird lifts, entry and exits via a disused, unlit lobby, and the most ridiculous adventure through back corridors and 45 degree ramps to get to have a cigarette.

My journey home was not nearly so traumatic, although there was a good reason for this.  The station master at Shankill put me on the DART in a carriage which was marked with the wheelchair symbol.  As I pulled in beside the door, I noticed a handy little intercom, enabling someone like me to contact the driver in the event of, say, not being able to get off the fucking train.

So, those are the highlights of my Free Travel over the last six months.  There are plenty more stories from farther in the past, and I’m sure there’s many more delightful anecdotes to come.

O! What A Beautiful Dog!

Being out and about with an assistance dog is a mixed blessing.  Don’t get me wrong – I wouldn’t be without a guide dog any more than I’d poke my eyes out.  But there’s always a downside, and the main obstacle to freedom with an assistance animal is Other People – aka “Morons”.

Morons, like bacteria, are everywhere.  Even people with intelligence, reflectiveness and compassion can fall victim to Temporary Canine-Related Moronia [TCRM] when they unexpectedly encounter an assistance dog.  And unless you have a friend with an assistance dog and you’re visiting them at their home, every encounter with such a dog is unexpected.  Particularly since most people never look down in the course of normal day-to-day activities; meaning that many people begin an assistance-dog-encounter with the sensation of a wet nose in the palm, or a wagging tail against the leg, or the yelp of a helpless beast who has just had their paw or tail stood upon.

For us humans who have dogs as an extra limb[s] or sense, these encounters also have a particular character.  Some have the shape of another person [Moron] jumping in shock or fear; then either apologising or talking to an animal who clearly doesn’t have the faculty to answer their direct questions; e.g. “Aren’t you beautiful?”, “What’s your name?”, “How old are you then?” etc.  I leave it up to my canine companion to answer those questions if he sees fit.

Then there are random statements from strangers.  I call these “statements” because I have yet to think of a polite, relevant response.  These take the form:

(a) “That’s a beautiful dog”,

(b) “Does he take good care of you?”

and occasionally something like

(c) “God bless you”.

My inner responses to these, which I’m simply too nice to utter aloud, go something like:

(a)        “Thank you, I made him all by myself.”

(b)        “Yes, he makes my dinner, brushes my hair and picks up my poo.  No, wait – it’s the other way around.”

(c)        “Even if there was some kind of omnipotent being, which there patently isn’t, don’t you think the available evidence rather points to him having cursed rather than blessed me?  Lifetime impairments and chronic pain seem an unnecessarily obtuse way for an all-loving deity to show their favour, don’t you think?  Or maybe, and I favour this alternative myself, ‘He’ has a seriously fucking sick sense of humour.”

So generally, I respond to such statements with a wan smile if I can be arsed; or with feigned deaf-blindness if I can’t.  And let’s face it, most Morons can’t tell the difference between deafness, blindness and idiocy.

Another symptom of TCRM is the loss of the ability to read.  Most guide dogs and assistance dogs have their role written in English (or other native / widely understood tongue) somewhere on their person.  My dog has a luminous strip on his lead saying “Guide Dog”, as well as a day-glo sign attached to his harness reading “Please don’t distract me, I’m working”.  These clearly turn to some sort of gibberish in the minds of people suffering from TCRM, since I have been asked “Is that a racing dog?”; and been refused entry to businesses that display a sign saying “No dogs allowed EXCEPT GUIDE DOGS”.  Mostly, Morons just feel free to attract the dog’s attention – sometimes when we’re halfway across a road – or just approach the dog directly to pat his head and purr babblingly into his ear.  A precious few humans seem to be able to shake free, at least in part, from TCRM to ask if they can pet the dog.  However, the TCRM still prevents them from being able to perceive whether I’m in the middle of a private conversation, commercial transaction or in a hurry to get to work.  Even if I say “no, sorry, he’s not allowed to socialise when he’s working” or some other polite way of saying “fuck off”, the Moron will often attempt to draw a lecture on dog breeding or training out of me.  (Very few wheelchair users get stopped on the street by a stranger who wants to admire their chair and discuss design and engineering.)

An added difficulty that arises from this constant interference is not obvious at first, even to the person using the guide dog.  When your dog goes everywhere with you, it gets to know your friends and colleagues.  Those friends who come round to your house to hang out also get the opportunity to play with and cuddle the dog when it’s off duty.  So when you go to meet a friend, in a crowded café or busy bar, the dog recognises its friends and makes its way toward them.  This is really helpful if you can’t recognise someone until their face is inches away from yours.  However, if all the Morons reach out to cuddle and distract your dog as you try in vain to squeeze past their drunkenly immobile arses, the dog starts to hink “we’re making loads of new friends tonight!”  When the half-cut barfly then turns to engage you in dog-related conversation, it can take some time for the human to realise that this isn’t an old friend or even a vague acquaintance, but rather some old lech who could potentially become a stalker. (This happened to me, albeit when I was using a white cane rather than a guide dog.)

Finally, there is the sheer boredom of having The Dog Conversation countless times per day.  Temporary Canine-Related Moronia can go undiagnosed for years if the sufferer has regular contact with dogs.  Therefore, when a TCRM patient approaches an assistance dog, they already have an interest in, and stories about, dogs; often those suffering most acutely have experienced loss of a particular canine companion who bears some resemblance to the assistance dog in question.  [In fact, independent research suggests that the virus thought to cause TCRM adapts itself to a particular breed and gender of dog.  Although any dog would make a decent host, with the human acting as vector [carrier], the virus is most strongly attracted to the breed and gender of dog to which it initially adapted.  The virus may even drive its human vector to ask questions about the age, sex, pedigree and character of the assistance dog as a means for the virus to establish the suitability of its new canine host.  Once it has identified a viable host, the human vector must make physical contact with the dog, paying no attention to other humans in the vicinity, to enable the virus to transfer to its new host.]  Thus, The Dog Conversation replicates itself exponentially, as we smile and nod politely and remember that we are ambassadors for all people with disabilities…

 

Despite all this ranting,  I must admit to occasionally enjoying The Dog Conversation, and letting certain people off the No Touchy He Worky rule.  No amount of general irritation could possibly detract from the incredible freedom given by working with an assistance dog.  This rant is usually internal: I express it here for the dual purposes of entertainment and edification.