If you hear anyone complaining about the strike in UK’s Southern Rail, let me share three experiences i have had on driver-only operated trains.

1: On the Stanstead Express, the doors closed on my guide dog. She jumped forward onto the platform and the door closed onto my arm. I was just realising i would have to let go of the lead and leave her alone on the platform when the assistance i had booked spotted us and screamed at the driver to stop.
2: On a DART in Dublin, no assistance showed up to get me off the train. I hadn’t been put in a designated wheelchair space, so had no access to an emergency intercom. I was left on the train until it reached the terminus and the train was abandoned. I rang the station i had started, and eventually i was taken off the train and put in a taxi to get to my destination.
3: My local train station is often unstaffed as a “cost-cutting” measure, especially for the earliest and latesttrains. Thes trains are also the ones which don’t carry ticket inspectors, so the driver is the only Iarnrod Eireann employee around. One evening, a young driver did his best to get me onto the train using the ramp used for getting the catering trolley on and off. However, the driver had never used the ramp before, and had probably not been trained to do so. It was the wrong way round, so when my front wheels reached the train, the back wheels pushed the ramp away behind me. The driver managed to catch the back of the chair before it crashed onto the platform. Ever since, i have made double sure of the ramp’s stability before going near it.
For all this, i’m very glad i don’t have to use the next station down the line. Dromod is permanently unstaffed, and has two platforms connected by an overhead footbridge with loads of steps and no lift. If you use a wheelchair and want to use this station, you have to call well in advance so that the train pulls into the right platform.
Fewer staff always leads to worse accessibility.

Updates: MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Since publishing this blog post on Friday, I have done this radio interview with local station, Ocean FM:

Then, sitting in the doctor’s waiting room this evening, I heard this segment on RTE Radio 1’s Drivetime:

DriveTime – RTE Radio 1 – Monday 22nd August: Home Care Services

I have e-mailed the programme to point out the connection between the two stories. However, I don’t use Twitter! So please feel free to tweet @DriveTimeRTE

ORIGINAL POST:

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

MY GOVERNMENT IS KEEPING ME UNDER HOUSE ARREST

Here is a letter I sent to the Physical and Sensory Disability service in the North-West this week:

 

12th August, 2016

Re: Emergency increase in Personal Assistance hours for client with multiple disabilities

To whom it may concern:

I am writing to request an urgent increase in Personal Assistance (PA) hours until early 2017. I am visually impaired and have restricted physical mobility, meaning that I need to use a guide dog and a powerchair to leave my own house for medical appointments, shopping, banking and participating in society. I have outlined the nature of my disabilities and their impact on my daily life in the attached Disability Impact Statement, and my specific requirements from a Personal Assistant in the attached form.

My current guide dog has had to retire due to health concerns. Due to my unusual set of needs, a succession dog will not be available to work with me until early 2017. This leaves me with severely restricted mobility in the interim.

As well as providing sighted guidance for mobility outside the home, my specially-trained dog provided additional mobility assistance within the home. The loss of this essential part of my independent living toolkit therefore has a significant and acute impact on my daily life.

I live alone, and currently have 15 PA hours per week, which are almost entirely used for assistance with personal care, housework and, to a minimal degree, accessing print materials within my own home. I already have very limited access to any assistance with transport or tasks outside the home. Having no assistance dog now means I am restricted to a few essential journeys very close to home (within 1-2 km) on familiar routes with good environmental accessibility.

In my current situation, I cannot visit my parents in Dublin, visit any friends’ houses or participate in many recommended theraputic activities e.g. a group singing project organised by the mental health service to which I was referred by the occupational therapist. If I drop, spill or break something on the floor, I may have to wait for 23 hours before a PA is available to clear it up or find essential items for me. When I need to make a medical appointment, I have to wait until a friend with a car is present before I can arrange a time that I can attend.

The interaction of my visual impairment with my mobility impairment means that I am in an unusually challenging position. These impairments combine in unique and often unforeseen ways to create complex barriers to my participation in society and living independently. As such, they should be understood as a form of “third impairment”, with needs distinct from people with only a physical or a sensory disability. The combination of Personal Assistance, powerchair and guide-dog is an essential tool for my independent living. Without that special combination, I am unable to leave my front door by myself. Without a working guide-dog, I urgently need a much higher degree of Personal Assistance to maintain my level of independence.

Thank you for your consideration.

Yours,

Isolde Carmody

 

Within 24 hours of writing that letter, my cat puked somewhere in my bedroom. I couldn’t see where, but boy could I smell it! There would be no PA available to clear it up for me for another 18 hours. Despite keeping my bedroom door closed (the smell was truly awful), my retired guide-dog got in there and helpfully licked up some of the vomit. Since I didn’t know where the vomit was, or whether the dog had eaten all of it, I slept on the sofa that night. The next day, my retired dog was off his food, and had diarrhoea, thankfully in the garden. My PA that morning couldn’t find the vomit, partly because she doesn’t understand animals, so it was 48 hours later that the last of the vomit was cleaned up.

Today, I was told that no new hours had been approved for me. I can’t leave my house. And I won’t be able to go anywhere further than 1 or 2 km until some unspecified time in 2017.

THIS IS ILLEGAL DETENTION

We Forgot to Invite You – The Cruelty of Exclusion Through Thoughtlessness

A few years ago, I had a series of nightmares in which I was forgotten. One involved a group of my best friends getting together and going on my favourite radio show, and I heard the broadcast. They thought it would be a great treat for me, but I was deeply distressed that they never thought to invite me to participate in the show itself.

This is a feeling I encounter on a pretty regular basis. I get left out of the things I most want to be involved in because someone – or a whole series of someones – never thought to include me in the activity. Most usually, this is through genuine ignorance or forgetfulness, but that can feel more personally hurtful than explicit prejudice.

This is most often encountered via technology and new media. The scramble to optimise content for smart-phones has left non-visual learners and visually impaired people out of the picture from first principles. What I mean by that is that newer technological interfaces are deeply based on visual interactions. This is in contrast to traditional operating systems which are based on structured text. Text and code are much more open to non-visual representation.

I don’t have a smart-phone. I used to have an amazing mobile phone on the Symbian operating system which was one of the best accessibility aids I’ve ever used. It is irreperably broken now (it’s the motherboard that’s gone!), and I feel like I’ve been left ten years behind the rest of the world. I can no longer get a smart-phone type device without a touch-screen.

There are applications which purport to make touch-screen phones usable by the blind and visually impaired, but I can’t see the value in them. Sending a text message on a touch-screen phone would be like asking a life-long touch-typist (which I also am) to type documents using a point-and-click on-screen keyboard. Now, I know people who have written books using a foot-controlled pointer to pick out words letter-by-letter, but that was thirty years ago. For me, the sensible way to send a text is using the old numeric keypad. It’s galling to be asked to slow down my technological interactions by such a significant factor for the sake of sighted users getting to their information a wee bit quicker.

As my dear friend Felicity Ford put it, the exclusion of non-visual technology users from the smart-tech revolution is equivalent to a shiny new public building going up with flights of steps everywhere. Maybe they will put a ramp in, or maybe wheelies will have to find the servant’s entrance, ring a bell, wait for the back door to be unlocked and negotiate ten minutes of corridors and tiny lifts just to get into the public foyer. And by the time you get into the foyer, you discover that the people you wanted to meet up with have gone out to the smoking area, which is down a fire-escape. You’re left hanging out the door shouting down to your friends. Not the most inclusive feeling in the world.

I encounter both these forms of thoughtless exclusion at least once a day. The one that made me cry most recently was when I was told about a major public meeting discussing the exclusion of women in Irish theatre. I was told about the Dublin-based meeting the day before, and my first concern was that I can’t really travel across the country with less than 24 hours notice. I wouldn’t be able to arrange P.A. time to pack a bag, the train journey would be exhausting and painful, I probably couldn’t book an accessible hotel-room in Dublin less than a week in advance… it’s just not feasible unless I want to be out of commission for a week.

The promotion for this meeting and the associated campaign was largely done via Twitter. I don’t use Twitter. It’s centred around smart-phone users continuously scanning a huge volume of text to pick out relevant details. Any time I’ve encountered tweets over e-mail or other websites, I can’t make any sense of the constant abbreviations, hash-tags, usernames or links to pictures or articles. So I just don’t bother.

When I looked up the associated blog for this campaign, the first thing I discovered was that the tickets for the meeting were already sold out. However, there was a message saying they would try to set up live-streaming for the event, and that there would be tweets sent out over the course of the meeting.

The morning of the meeting, I checked my e-mail and the website to see if there was a link for streaming. There wasn’t. The website said to visit their Twitter feed for links to streaming. I tried going onto Twitter using a web browser, and was utterly overwhelmed by the volume of text, with no clear way of finding the one piece of information I was looking for. Lucky for me, I was on Skype with the wonderful Felix, and even before I asked her, she found the link to the stream.

That link brought me to yet another social media site, but it said I needed Flash to run the streaming (which I already have installed) and suggested using Chrome instead. I don’t know how to use Chrome with JAWS, so I exited Firefox and opened the link with Internet Explorer. There, the page said to try Firefox or Chrome, so I could guess where this chain was leading. It became clear from the streaming site that it was set up to run via smart-phones. The meeting had already been on for half an hour at that point, so I gave up and started to cry.

That was a morning’s work to get nowhere. Five years ago, I would have had it easier. For one thing, web accessibility was all the rage. We had the W3 accessibility guidelines, and companies like Google and Microsoft were busy building in screen-reader features to websites and applications. Then, tablets and smartphones became the huge money-spinner. The sighted world has leapt ahead in terms of communication, information access and entertainment, while non-visual learners find themselves left even further behind than we were in 2010. Assistive technology has come on in leaps and bounds since then, but all the development has had to focus on compensating for an increasingly visual world.

So I repeatedly encounter the feeling that my friends, or potential friends, are throwing these great parties. Some of these parties are upstairs with no lift access. Most of the time, they just forget to invite me.

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…

 Isauq (Isaac) on the bus, looking a bit fed up.

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.

THE NEW (or maybe not-so-new) APARTHEID

I first met Kiwi Katie about four years ago, when I was still using my legs and she had just started using a wheelchair.  The Citizens’ Information Board was conducting research into the housing needs of people with disabilities, and this was their final focus group: one which actually included a few people with disabilities.

Katie caught my eye – or more accurately, my ear – as another articulate, young and motivated person with disabilities.  It was something of a relief not to be the only person talking in the room.

We finally got a smoke break, and Katie and I got to talking.  At some point in the conversation, she described the experience of using a wheelchair as “apartheid”.  I was shocked.  It’s a very loaded term, especially for those of us who witnessed the release of Nelson Mandela with joy.

But Katie went on: “I can’t go in the front door – I’m sent around to the servants’ entrance.  Our toilets are segregated.  I can’t use the mainstream bus service.  I can’t get onto a college campus or into an employer’s business premises.”  And I saw, to my horror, that she was right.

 

The parallels between the experiences of people with disabilities and people living in an ethnically segregated regime were deliciously demonstrated for me in an unexpected form.  “Better Off Ted” is one of those rare, witty, intelligent, satirical US sit-coms – and yes, it got cancelled after only 2 series.  The “sit” of this particular “com” is a department of a massive and sinister multinational corporation, “Veridian Dynamics”, and the characters work in research and development and product testing – from cow-free beef (“the meat-blob”) to weaponised pumpkins via glow-in-the-dark squirrels.


*** SPOILER ALERT! SPOILER ALERT! ALERT! THERE’S A SPOILER COMING! ***

 

In one episode, “Racial Sensitivity”, one of our scientist buddies finds things in the lab mysteriously turning themselves off and on.  He tries to activate the motion sensors which control the lighting, then the doors, the toilets, drinking fountains, the lift… all to no avail.  The heroic Ted (his boss) goes to find out from Veronica (Ted’s boss) what’s going on.

The answer turns out to be that the company has upgraded all the systems in the building from being motion activated to being light activated; specifically, light reflected off human skin.  This means “it doesn’t see black people”, which Veronica is told by her superiors is a positive thing, since it sees Asians, Hispanics and Jews.

Rather than reverting to the old system, the company starts to install “Manual Drinking Fountains: For Black Employees Only”and the like.  Our scientist buddy at the centre of this says; “Thank God we don’t have a company bus”.

Their next attempt is to employ a bunch of minimum-waged white guys to follow every black employee around to “activate stuff” for them.  But Human Resources is concerned that this is discriminatory recruitment practice, so they’ll need to hire another black guy to follow the white guy who’s following the black employee, then the second black employee will need another white guy to follow him, and so on ad infinitum.  The case is finally made to the company bosses that they simply didn’t have the parking to employ every human being on the planet by 2012, and the old motion detectors are reinstalled.

 

The experiences of the black characters in this episode finding themselves unable to open doors, turn on the lights or use the lift are instantly recognisable to a lot of people with disabilities.  It even follows the parallel “solutions” of installing separate facilities for us, or of employing “normal” people to bridge that gap for us.  When the central character in these events (Lem) decides he’s had enough of this segregation, he says to his colleague, Phil: “I still have my dignity! Now will you please come with me so I can use the toilet!”  Sound familiar, fellow mutants?

 

This may be quite a convoluted way of making a point, but I think it’s a good exercise in context, perspective and humour.  It is valid to describe the supports and services and basic amenities available to people with disabilities as “apartheid”, and it is also valid that this is schocking.  So it should be.  I have no idea whether the writers of “Better Off Ted” had any thought in their head about disability rights issues, but they have nonetheless created a challenging, effective and funny picture of what it takes for person with disabilities to do those “simple” things that others take for granted, be it using a toilet or walking through the front door.

A Grand Day Out

So, I realise it’s about half a year since I last ranted on this blog.  For my adoring public, my deepest apologies.  There’s no excuse, I just haven’t been bothered with it.  This does not mean that life as a wheelchair-using guide-dog-owner has been peachy.  Read on, if you want to be billiously outraged.

One day out in Dublin and Carrick on Shannon

 

I recently ventured down to the Big Schmoke to attend a meeting.  The trusty Merita and Quasi were my companions, and the train journey was not unbearable.  The staff of CIE have clearly had some pretty harsh training on how to deal with those awkward people who insist on having disabilities.  Of course, some of the staff are just decent human beings with an ounce of common sense, but even those members of staff who panic at the sight of anything out of the ordinary have been whipped into shape, and are, overall, genuinely helpful and have a fair idea of what to do when faced with a Crip.

Even better, though, was my tame taxi driver in Dublin.  He has a sister with a disability ( not a surprise – most people who work in the disability sector do so because of a personal experience, rather than a passionate commitment to equality), and is cheerful, helpful, CHEAP and honest.  He got me from Harold’s Cross to Temple Bar in 20 minutes, including loading Merita on and off the taxi.  Hooray for these decent people – they make life that bit more bearable.

After the meeting, the fun really began.  I had a few hours around town before meeting a friend, so I thought I might go SHOPPING.  I have commented more than once that it’s just as well that most charity shops are small, overcrowded and pokey, because if they were spacious, vast and accessible, I’d be a lot broker than I already am.  But I made a good stab at going around a few stalls, inadvertently destroying several display stands, using my lap as a shopping basket until the contents pour all over the floor, and generally having to say “EXCUSE ME” very loudly and repeatedly.

Then, the greatest challenge for a wheelchair-using guide-dog-owning person when out for the day – where can the dog and I go for a wee?  Being an alumnus of a certain city centre university, and having lived on campus there for a few years with said dog, I thought, “Ah, sure, I know where there’s a loo in there, and Quasi knows where there are some convenient bushes”.  (Bushes convenient for her, not for me, although not out of the question if desparate).

So in we trundled to the hideous 1960’s Arts Block of the unnamed city centre university, and headed to the secret lift (“we couldn’t have just anyone [st]rollingin to our premisis as if it was a national monument”) to avoid the baffling number of unnecessary steps between the street level and the toilets.  But before I got to the lift, a friendly blue sign told me I didn’t need to navigate the lift in order to relive myself of my biological burden.  A little experimentation later revealed a sign (not in Braille, of course) telling me to go back to the desk to ask permission to go to the toilet.  Off I went, and was presented with a bunch of keys.  I asked which would open the toilet, and was told “Ah, any of them will do it”.  Back I went to the hip-width, wheel-depth corridor which unnecessarily promised “access” to the locked toilet.  Now, I don’t have swollen joints, I don’t have a degenerative neurological condition that affects my dexterity, I don’t have Parkinsonian shakes, but it still took about 10 minutes of trying each key several times before I succeeded in inserting one which actually turned.  Then, it was simply a matter of super-human strength to turn the locking mechanism itself, and gymnastic manouevering (with a 360-point turn), to get my click, petite wheelchair in the door.  Closing the door behind me was similarly fun, due to the two wheelchairs being stored in this “accessible” toilet; presumably in case two paralytic students knacker themselves shagging in there and have to be wheeled back to their rooms.

The deed got done in any case, and even Quasi found a convenient corner (outside) after a bone-rattling trundle across the cobbles.  I’m sure there are those who might derive pleasure from this experience, but for me, it was just a teeth-gritting chore for which I was glad to have an empty bladder.  Next stop was my bank, my “home” branch, only 100 miles or so from where I live, since banks are incapable of transferring records within their own business within a single jurisdiction.  I took this opportunity to visit the bank because my local branch (about 1 mile from where I actually live) failed to remove the 20cm step at their front door when they did their expensive refit last year, rendering the friendly wheelchair-signs on their automatic doors completely redundant.

The “home” branch of my bank, being in Dublin city centre, is an old building, and that’s ok if a bit of thought is put into internal layout.  In this case, it meant a cargo-lift to surmount the 5 or so steps to the business level.  I squeezed into it, with Quasi being particularly crushed, but could not reach the 6 foot or so behind me to pull the non-automatic door closed so that the lift could operate.  A passerby did the honours this time, and we jerked in an impressively low-tech fashion up to the main level.  No assistance was offered by staff to help me find a free counter, or navigate the bizarre maze of head-height (waist-height to a mobile adult male) ropes that took random twists just so that Quasi would get confused, continue in a straight line, and clothes-line me into unconsciousness.  Managing to avoid this peril, I found an attended counter which only came up to about my chin.  I made my 30 second transaction, and then attempted to leave.  The lift again.  I got in (bearing in mind that my luscious powerchair is more compact that a manual wheelchair I previously used, and that I am not large), with Quasi squished in beside me.  I got us down, where a woman with a buggy was waiting to use the lift to go up.  The door wouldn’t open.  I fiddled with every button at my disposal, including bring the lift up a bit and then down again.  The door still wouldn’t open.  I pressed the alarm bell, which succeeded in deafening me and the dog.  I fiddled with more buttons, tried brute force on the door, with the woman on the other side doing likewise.  I pressed the alarm bell TWICE MORE with NO EFFECT.  It was another attempt at taking off and landing again that finally got the door open, and I left the premises with no sign of any member of the bank staff responding to the air-raid siren of the lift alarm.

I AM NOT IMPRESSED!!
In fact, I am changing bank, since I can’t physically enter either my “home” branch or my local branch.  So much for 15 years of custom.

The rest of the day was fine, until I got back to my home-town of Carrick and had to run the gauntlet of The BridgeThere is barely enough space here for two mobile, slim adults to pass each other on the pavement, let alone a chair and a dog trying to pass a buggy or ten tourists or an idiot with two insane yappy-type dogs intent on savaging Quasi while dancing into on-coming traffic.  But that’s just an everyday occurrence round here, along with pavements slanting in three plains with a carefully-placed lamp-post exactly in the middle of the pavement, with some exciting pavement potholes and random placing of pavement dishes.  But that’s just the price I pay for choosing to be crippled in a small rural town with no funding from central government and rocketing unemployment.  Silly me!!

Hospitality?

It has been said more than once that a hospital is no place for a sick person.  But it is the kind of place one might expect to be relatively accessible, given the numbers of people being moved around the building on trolleys and in wheelchairs.  Oh, the naivity of such an expectation!

Last Wednesday, I was at the outpatients department in Sligo General Hospital for an appointment with a geneticist.  Sligo is one of the better hospitals in the country, serving a geographically vast and disparate population.  It is desperately trying to hold onto its recently acquired cancer care services, so that people in North Donegal needing daily radiotherapy treatment or regular and debilitating chemotherapy don’t have to make a 6-hour journey to get to this treatment, never mind the 6-hour return journey.

Part 1: The Front Door

So, back to my jaunt last Wednesday.  The hour-long car-journey left me very stiff and sore as usual, and I had BOTH my PA’s with me – one to drive and one to push the chair!  We arrived at the Outpatients main door, which opens straight into a cafe area.  Unlike the main doors of the hospital, these were two sets of heavy manual double-doors.  The second door of each set had to be unlocked and held open by passing cafe staff, my two PAs and other hospital visitors.  Having swerved and ducked under the arms of this team of door-holders, I find myself in the care, facing a table and chairs, with a rack for trays on my left and an approximately 2-foot wide gap to manoeuvre myself, my chair and my guide-dog through.  It was like some bizarre stunt-wheelchair-rider obstacle course.  A couple of chairs, tables and “Danger; Slippery When Wet” signs were kicked aside to allow me ingress to the main hospital.
Whew!  One obstacle course complete, several more to encounter.

 

Part 2: Waiting Under the Stairs

My appointment letter instructed me to make my way to “Waiting Area 5”.  This involved registering at a very flimsy desk which was akin to a street stall with comparable facilities.  Naturally, it had a counter level which was over my head at wheelchair height, so I jammed myself between the side of the desk and a row of seats for waiting patients.  This also meant blocking the main access channel to a number of clinics and offices, so everyone who waited to pass had a great chance to ignore the sign on my guide dog saying “Please don’t distract me, I’m working” – petting her, talking loudly about her without any reference either to me or to the fact of her being a WORKING dog.
We were directed to wait in a cramped space that felt like a cupboard under the stairs.  It included some toilets, none of which would accomodate a wheelchair, and one of which had no way to lock or keep closed from the inside.  We were right beside an emergency exit which was directly opposite the front door we had squeezed through.  No way of leaving that way without setting off alarms, though.The only space I could really wait in my chair was directly in front of a door to an office.  Although this didn’t prove a problem, it was a great excuse for the excitable nurse that came through to make fools of her and me.

 

Part 3: Over-excited Nurse

Human beings, in any given situation, can be the greatest hurdle to accessibility.  In particular, with guiding or assistance dogs, certain people get transfixed by the dog and their brain stops working.  One such was a random nurse who passed through where we were waiting.  The usual squealing and gooing ensued, the getting down on all fours to let the dog lick her face…. and then she went into her little clinic room to treat a BABY.  No apparent washing of hands, though I’m (fairly) confident she would have worn gloves.
As she came back through, she noticed that I was parked in front of an office door.  She knocked on the door and poked her head around it.  “Just to let you know, there’s a…. a PET out here; just so you don’t step on his tail”.  She did NOT say: “Just wanted to let you know there’s a woman in a wheelchair in this waiting area.  There’s nowhere else to fit her wheelchair, and she has a guide-dog here too.”  That would have been helpful.

 

Part 4: Blood in the Stairwell


After a very interesting consultation with a wonderful geneticist, I went down the corridor to have some blood drawn for genetic analysis.  The bloods room seemed to be two rooms with a connecting door, access to which was via a narrow passageway at the foot of a flight of stairs.  I had to go straight through the corridor past the stairs in order to turn my wheelchair, then back along the corridor to the entrance.  There was a row of seats along this corridor which meant I had to wait in the space directly in front of the door.  There was no way of bringing my guide dog in, so my PA kept her company outside while I had genetic material extracted from my arm to be kept on record indefinitely.

 

Interlude: A Reflection

I realised that I have no problem with my DNA being kept on record indefinitely for scientific research, health issues and future historians or anthropologists.  Just as long as NO government agencies or Justice powers have any access!

 

Part 5: An Unfortunate Potted Plant

I took the opportunity to visit the Day Services section of the hospital which houses the Pain Clinic.  Not for an appointment, but to see if there was any news about my referral to Bath Rheumatology Hospital for tests.  I had been on the system in Bath since last June / July (about 8 months), and for most of that time, their administrators were waiting for an E112 form from the HSE to pay for my treatment before they issued an appointment date.  Meanwhile, the HSE were patiently (pun kind of intended) waiting for an appointment date from Bath before issueing the E112 form.  After about 6 months of me trying to find out who to ring and talk to to move things along, I figured out that this was the impasse and it started moving again.  NOTE: My pain specialist, his secretary, the administrators in Bath Hospital, the HSE office in charge of issueing E112s: NONE of these people, with whatever resources they have, and whatever their job description, noticed that this was what was holding up my best chance of a diagnosis for my crippling pain condition.
SO I went up to Day Services, which again has a counter height that extends above my head when I’m in the wheelchair.  To communicate with the staff meant squeezing in between the side of the desk and the first row of seats for waiting people.  After talking to these good people, I backed out to wait.  There was (maybe still is) a very unfortunate potted plant which just got repeatedly battered by my chair no matter how I tried to manoeuvre.  I just gave up and stayed in the middle of the corridor as usual.  The waiting area was thankfully very quiet.

 

Epilogue

And the pain clinic secretary went and rang Bath and was able to give me my appointment date!!  I’ll be admitted on Sunday 15th March for 3 (more likely 5) days.  Now for the fun of international travel in a wheelchair!!

Today’s Subjective Rating:  Grimly Amusing