Minister supports view that having a disability is worse than dying of cancer

Here’s the thing about Cervical Cancer: It can kill you. Quickly. Painfully. While you’re still young.

Here’s the thing about HPV (Human Pappiloma Virus), a causal factor in Cervical Cancer: You can contract the virus via skin-to-skin contat. You don’t have to have unprotected penetrative heterosexual sex in order to contract it.

This is a fact I was unaware of until I was in my thirties, and I thought I was very well informed about safe sex. I was well informed – about safe sex for heterosexual and male homosexual sex. I new about condoms. I didn’t know about dental dams.  I didn’t know that I was at risk when having unprotected sex with my girlfriend. In particular, a promiscuous ex-girlfriend who went on to develop pre-cancerous cells in her cervix after we had split up. Thankfully, I’ve always attended for smear tests under Cervical Check, and the lab used by my health centre happened to check for HPV at the same time as examining cells from the smear. Not all labs do this, apparently.

Here’s the thing about Gardasil, the HPV vaccine that has been made available to all teenage girls in Ireland for the last seven years. Even IF it caused the ME, Chronic Fatigue Syndrome and POTS that some people believe it causes, THESE CONDITIONS ARE NOT WORSE THAN DYING OF CANCER. To put your daughter at risk of dying of cancer in preference to putting them at (an unproven) risk of a chronic, disabling disease is to suggest that MY life is not worth living.

Minister of State with responsibility for Disability Issues, Finian McGrath TD, publicly rolled in behind this view. He has since back-pedalled furiously, but that does not undo the damage he has done in putting young women at risk of cancer while simultaneously supporting the view that dying of cancer is preferable to having a chronic health condition in Ireland. There may well be times when I might hyperbolically support this view, but I would still vaccinate every teenage girl in the world with Gardasil.

The health service here has to take some of the blame for the false connection having been made between receiving the Gardasil vaccine and the onset of ME, CFS and POTS symptoms. Chronic fatigue and chronic pain syndromes often present in adolescence. My chronic pain cymptoms were routinely dismissed as “growing pains” throughout my pre-teen and teenage years. Having reached 40, I don’t think I’ve any growing left to do (except horizontally), yet the pains are there, the pains are worse, and they have disabled me. What’s more, I have continued to feel ignored and dismissed by the majority of health professionals I have seen down the years. Of those I have seen by whom I haven’t felt belittled or patronised, only one medical professional has even attempted a medical intervention to improve my symptoms, and one other attempted to get me a more specialised and specific diagnosis than “fibromyalgia”. So when a grown woman using a wheelchair and walking aids is treated this way by our health system, I can understand the frustration and panic of parents watching their teenage daughter struggle with similar symptoms.

Another chunk of responsibility must be laid squarely at the feet of Fine Gael arrogance.  At the launch of 2017’s vaccination campaign in August, Minister for Health, Simon Harris, said that parents should “butt out” (sic.) of medical discussions unless they were medical professionals. The director general of the Health Service Executive, Tony O’Brien, described social media campaigns like the parent group, Regret, as “emotional terrorism”, and went on to describe how members of the public were being duped by fake news on social media.  This kind of language is confrontational, patronising, and in no way seeks to bring concerned parents on board. These statements tell concerned parents that they are stupid and ignorant, that they should just shut up and listen to what the clever men are saying, and should stop trying to interfere in the important businesses of state.

I cannot help but wonder if one factor in this kind of response is that the origin of the complaints is teenage girls. Are their experiences being dismissed as “hysteria”? There are many health issues that affect more women than men which go uninvestigated, under-diagnosed and untreated. Chronic pain and chronic fatigue syndromes are very high up that list. Whatever the motivation or unconscious assumptions behind these comments, I cannot see the use of phrases like “butt out” and “emotional terrorism” making a worried parent change their views.

And so these comments do nothing to address the serious issue of a drop-off in uptake of the HPV vaccine – a vaccine for which we fought a decade ago. Vaccination of teenage girls has dropped to a worrying 50%, despite the reporting of associated symptoms also having dropped.

But I would still much rather be in pain and unable to run, dance and ride horses for the rest of my life than have cervical cancer. Yes, cancer is generally not the death sentence it once was. Yes, survival rates and quality of treatment has improved beyond recognition. But it is still a painful, life-altering, misery-making disease that can end your life long before you’re ready to die. It strips you of energy, the treatments make you feel like hell and everyone around you feels helpless and miserable too. Given the choice, I choose to keep fighting from where I am – in a wheelchair, protected from HPV.

Note:

For the background to this story, please follow the links within the article. Some of these links may be subscriber-only content from the Irish Times. Apologies if you are unable to view the specific articles.

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Three Utterly Empty Gestures Aimed at the Blind

 

You could say that any gesture aimed at the blind is an empty one. These are three of my favourites:

Relief Map of Edinburgh

A photo showing part of a bronze relief map with some of Edinburgh's streetscape in the background

This is a bronze relief map of Edinburgh, located at The Mound just off Prince’s Street

 

There is a plaque affixed to this bronze sculpture which reads:

PRESENTED TO THE CITY OF EDINBURGH BY THE STAFF OF MARKS & SPENCER, EDINBURGH IN 1984 TO MARK THE COMPANY’S CENTENARY. THIS RELIEF WAS CRAFTED TO ENABLE PEOPLE WITH IMPAIRED VISION TO ENJOY THE GRANDEUR OF THE CITY.

from Canmore.org.uk

This message is first in Braille, then in relief letters. Isn’t that nice? The important information, that this is a selfless gift from a thoughtful corporation to the poor deficient blindies for their edification and enjoyment, can be read by any literarte English-speaker.

Such a pity that the street names and all other text on the map is only in relief letters, not Braille. So you can count the many lumps and bumps that Edinburgh has to offer the curious traveller, but don’t expect any of those lumps and bumps to convey any useful information.

(I love Edinburgh, despite its cobbles and steps and impossible slopes. I first encountered this sculpture in 1995 while attending the Edinburgh Punk’s Picnic.)

 

Garden for the Blind, St. Stephen’s Green, Dublin

A visitor reading the Braille signage in the garden for the blind in St Stephen's Green, Dublin City Centre

A visitor reading the Braille signage in the garden for the blind in St Stephen’s Green, Dublin City Centre. From Yelp.com

Original image on Yelp.com

In St Stephen’s Green, in the heart of Dublin, there is a garden for the blind. It’s safely tucked away from public eyes, in an out-of-the-way nook that you would never find if you didn’t know it was there.

In this little nook is a wall, a little taller than waist-height if you’re standing. Along that wall is a series of bronze plaques, each bearing the name of a plant in Braille and in relief letters. In fact, this was my first encounter with Braille in a public setting, before I had learned to read Braille, and I distinctly remember recognising the “S” by comparing the Braille with the Latin characters. The names of the plants include Lamb’s Ears, a furry-leaved plant I rmember from early childhood, and Lavender, a plant I still make any excuse to brush against.

What a lovely idea. In Dublin’s iconic city centre park, a place specially constructed for blind people to access and appreciate plant-life. Shame no-one told the gardeners. Any time I’ve been there, the plants nearest to those signs bear no relationship to the named plants. On at least one occasion, the nearest plants were spiky and unpleasant to touch and smell. Another good idea gone to waste!

TCD Arts Block

Two images side by side, on the left, of the Arts Block, Trinity College, Dublin, labelled "Bladerunner"; on the right,a screenshot from the movie BladeRunner, labelled "TCD Arts Block"

Spot the difference… From The Daily Edge

Modelled on the Hanging Gardens of Babylon, apparently – but they used the wrong type of stone in the bricks, so they couldn’t grow plants in the cavernous ceiling blocks. But that doesn’t explain the Blade Runner motif running through the building, down to the blue toilet lights.

 Fiona Hyde, writing on TheDailyEdge.com

From September 1995 to November 2005, I studied Arts and Humanities in Trinity College, Dublin. All my lectures and tutorials took place in the infamous Arts Block. How to describe this award-winning architectural gem?
When I started, this was a 5 storey building. They built a 6thloor on top in the early 2000s, which meant I was travelling in an outdoor freight lift for a while. And nearly got carbon monoxide poisoning while taking an exam, since the builders’ generator was positioned directly in front of an air-vent intake. But I digress.
The first confusing thing about this building is that the floors are numbered using the  American system. So rather than having a ground floor with the first floor above it, you have level 1 with level 2 above it.
The second confusing thing is that the main floor, at street level, is level 2.
The third, and perhaps most baffling element of the design, is that each floor gets smaller as you ascend. This means there are fewer rooms on level 4 than on level 3.
BUT THAT’S NOT ALL!
Each room is given a 4-digit number, starting with the level number. So there was a tutorial room in the English Department numbered 4012, and the main Philosophy tutorial room was 5012.
But these rooms were not directly above one another, nor were they the same distance from the lift, nor were they in an analogous position in any way to one another. In fact, every floor in the Arts Block looks just similar enough to give you some sense of familiarity, but is laid out just differently enough to give a young person the experience of having dementia.
During my tenure, the room numbers were in black on a perspex panel screwed to the door near its top. Each door had a fluorescent light shining directly down on the door, with the effect that the closer you stood to the door, the more intense was the shine on this perspex panel, rendering the numbers even more invisible than their eye-level-for-giants positioning already did.
In one of my last terms there, one of my classes was scheduled in a room on level 3 I had never been in before. I think it even started 31**, rather than the cosy central 30**s, given it a truly exotic flavour. I don’t even know what the nearest Departmental office was. For the first time in nearly a decade, I decided to make use of something I had walked past repeatedly but never explored.
Tucked away in a discrete, out-of-the-way, randomly assigned corner of each floor was a big brown tactile floor-plan. I had stumbled across these – usually quite literally – on many occasions, thinking “Oh. That’s cool.”  Suddenly, I had the most genuine reason in the world to check it out.
“Ok, so this is the front of the building overlooking Fellow’s Square. So this must be the lift I’ve just come out of. I’ll see what the numbers are in the nearest corridor….”
“#1… #1… #1… Hmmm….”
“I’ll check these rooms further away from the lift. I’m pretty sure that’s the direction I need to go in….”
“#1… #1… #1…”
“…Oh…”
It turns out that this extravagant, visible, and probably costly, demonstration of how inclusive Trinity College was of its blind students was entirely without function. Or it may have had a function, (perhaps ticking a box on a funding form?), which had nothing to do with a blind person navigating the nightmare industrial-institutional fantasy that was, is, and ever shall be the Arts Block.
So there you have it. Three concrete (and bronze and paper) examples of how accessibility is not simply a question of building something and then forgetting about it. Nor is accessibility about non-disabled people deciding what would make their space more accessible without bothering to check with the people they are supposedly benefitting. My conclusion? That these monuments are a gift to the sighted public, so that they can feel smug and warm. And if we blindies and crips can’t make use out of these graciously bestowed gifts, we’re obviously not trying hard enough.

 

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.