It’s my f**king money….

This post is going to be about what it’s like to manage your money while blind. I’m sure there is plenty of prurient interest in the best way to scam a blindy, but I’m not going to cover that here. I am going to talk about just how useless, ableist and thoughtless government agencies and banks are when it comes to treating us as human beings with rights like everyone else.

My metaphorical eye (actually my ear) was caught by this Irish Times headline on 7th April 2020:

Coronavirus: Lack of electronic transfers for blind allowance causing hardship

The article by Social Affairs correspondant, Kitty Holland, was discussing the piecemeal approach of the HSE when it comes to issuing the Blind Welfare Allowance.  Some regions are offering to issue the payment via Electronic Funds Transfer (EFT), while other regions persist in sending out a physical cheque, which needs to be taken to a physical bank branch and physically lodged into an account. In this era of social distancing, self-isolation and cocooning, this presents a real challenge to blind people trying to stay healthy.

But the problems are deeper, further back in time and more bizarrely convoluted than that. Strap yourselves in…

You’re blind, not disabled….

If you are “registered blind” in Ireland, you are special. I mean that in the worst possible way. In terms of social welfare supports, we’re not treated like other disabled people. We receive the Blind Persons’ Pension, not a Disability Benefit. As the “Pension” part of our payment suggests, the payment is managed by the Old Age Pension office – just one of many examples of structural ableism, lumping the disabled and the elderly together. I’ve been a pensioner since I was 18.

Here’s one example of just how ludicrous that system is. While I was at university, I went onto the “Back to Education Allowance” – another misnomer, as I had been in education continuously since the age of 2. The allowance meant I could access an annual book allowance, and could essentially hang on to all my other benefits. When I finally left university, I was setting up as a self-employed sole trader, and wanted to switch onto the “Back to Work (Enterprise) Allowance”. Again, a misnomer, as I hadn’t been technically unemployed. Again, this was a scheme that facilitated me hanging on to benefits while setting myself up as self-employed. Imagine the day when I rang up the Old Age Pension office:

“Hello; I’m currently on the Back to Education Allowance, and I want to switch to the Back to Work Enterprise Allowance.”

“Ummm…. Hang on there while I transfer you to someone else.”

I got transferred about 5 times. Sure why would anyone in the Old Age Pension office know the first thing about either Educational or Work benefits?

So what’s this Welfare Allowance thing?

Good question. On top of the weekly Blind Pension, whereby I qualify essentially for the maximum amount of social welfare, there’s a means-tested Blind Welfare Allowance. I get this monthly, and it’s meant to “offset the additional costs associated with being blind”.  It’s not enough to pay for specialised eyewear, magnification, Braille production, assistive technology or even having a working iPhone, (rapidly becoming the de facto do-everything assistive bit of kit for blindies). My Welfare Allowance tends to cover getting an order of toiletries, some books, new underwear…. anything that isn’t a daily or weekly expense, but requires a bit of capital. Shouldn’t that kind of thing be covered by the weekly basic payment? Yes; yes it should, as many people on emergency benefits during the Covid-19 crisis have discovered. As soon as there was a massive increase in the number of people signing on for unemployment benefits, those who expected their jobs back afterwards kicked up shit about how little money they were expected to live on, and the government increased that payment from €220 per week to €350 per week.

I dream of such riches.

But there’s Braille on ATMs, right?

On to the banks. These are becoming less accessible as time goes on. The Braille markings on ATMs are really just adding insult to injury. Fine, I can tell that this is button number 1 and that is button number 6. But there’s no way in hell of finding out what those buttons actually do. I once tried to use an ATM that had a little headphone socket to hear what  was on the screen. In fact, I deliberately moved my account to that bank (which no longer exists) because they had a lovely ramp up to their door, push-button doors into the branch and this magic ATM. Imagine my surprise when no audio came through my headphones. It might have had audio information when it was first installed, but no-one had checked that it was still working. They might never have checked it at all.

But I’m sure many bankers have seen those Braille-marked buttons and assumed that it made the machines totally accessible. The concept can be quite difficult to explain to Ableds. I once had to explain to a local authority that their info-terminals were no use to a VIP, even with JAWS installed. If you can’t see the touchscreen, how do you know which part of the screen to touch to make it talk?

Then there’s the increased automation of bank transactions; a transparent move by corporations to save money by employing fewer humans. This is the same trend that has seen smaller, rural branches cut to destruction. My local bank branch has a load of machines which they do everything in their power to make you use instead of going to a counter and speaking to a human. By “everything in their power”, I include the practice of charging 600% for a “staff-assisted” transaction in comparison to an automated transaction. I’ll say that again. If you go to a counter and lodge your Blind Welfare Allowance cheque with a member of staff, it will cost you 6 times as much as using one of the machines.

Why not just use the machines?

I sincerely hope, dear reader, that you can guess where this is going. The machines are not accessible to VIPs. Furthermore, in my local branch, they are surrounded by privacy shields which don’t provide enough space to get near them in a wheelchair . So disabled clients have no choice but to make “staff-asisted” transactions, and pay 6 times as much for the privilege.

I’m not even going to approach the tawdry history of my struggles with online banking, especially with the use of card-readers with tiny buttons and invisible screens. Back to the Kitty Holland article…

Cheques and Balances

Aside from the usual thrill of coming across any mention of disability in mainstream media, this article grabbed my attention because I had just been sent a letter about this very issue. And yes, I mean a letter. In tiny print. In the post.

I could tell that it was from the HSE because their logo was on the envelope. So I didn’t even bother opening it until my trusty PA came round. She’s my trusty PA because she’s the one I trust to see me naked, file my private papers and have access to my bank details. When she arrived for work, I handed her the letter, saying “This is probably another normal-print letter from the HSE saying: We’ve just realised how ludicrous it is to keep sending you cheques when you’re not supposed to leave the house at the moment, so here’s a form you can’t read so that we can finally lodge the money straight into your account, which will also save your extravagant bank charges.” To my astonishment, my PA said “Yes, but not in those exact words!”

To recap, this was a letter and a form being sent out exclusively to blind and visually impaired people. Neither the letter nor the form was in an accessible format, and the form required filling in by hand. Their only nod to alternative formatting was the possibility of emailing the completed form back to them. So when I emailed it to them, this was the body text I included with my message:

Please find attached my form requesting a change to receiving my blind welfare allowance.

• The letter should have been sent in an accessible format – I use Braille
• The form should have been available in an accessible digital format.

My rights to financial autonomy and privacy have been violated, as I had no choice but to get a third party to fill in this form. Further, the form was not specific to people in receipt of benefits, and as such, was confusing and made us feel like an after-thought, not a priority.

As you are managing a fund specific to blind and visually impaired people, you should instigate policies of informational accessibility as a matter of urgency. It is your obligation under the UN Convention on the Rights of People with Disabilities (CRPD), to which Ireland is a signatory.

Why do I still have to send these messages to government agencies? Especially those tasked with supporting VIPs and disabled people? It’s getting old, and the novelty is wearing very thin.

Updating “Web Accessibility – Why Bother?”

I have begun work to update my post, “Web Accessibility – Why Bother?“, in the light of the Irish government finally ratifying the UN Convention on the Rights of People with Disabilities (UNCRPD).

(Note: it only took our government 11 years from signing the Convention in 2007 to ratifying it in 2018. They have yet to ratify the “Optional Protocol”, which would enable Irish citizens to hold the government to account in terms of implementing the Convention.)

I wanted to get a list of all the countries who have signed and ratified the Convention, so I followed a link to a page on the Office of the High Commissioner for Human Rights (OHCHR). This is the page I was brought to:

http://indicators.ohchr.org/

The only way the information I was looking for was displayed was in an untagged image map.

The upshot of all this is that I’ve just e-mailed the Office of the High Commissioner of Human Rights as follows:

Hi,

I have been researching the UNCRPD with specific reference to provisions for accessibility to digital information. I visited the following page to obtain a list of signatories to the UNCRPD and its optional protocol:

http://indicators.ohchr.org/

I could not find such a list accessible to a blind person using screen-reading assistive software, only an “interactive map”.

I hope you can appreciate the irony of being unable to access information relating to the right to access information! Can you please ensure that any information presented in a graphic is also presented in simple, accessible text? Otherwise, it could be embarrassing to the UNOHCHR!

Very best wishes

Isolde Carmody

Visually Impaired citizen of Ireland

You couldn’t make it up!

Here is the text of what I said in the above video:

 

Hello!

You may or may not know that, for the first time in the up-coming referendum, blind people – finally – have won the right to a private ballot. Up until now, there was no way to have a private ballot if you couldn’t read the ballot paper and write on it yourself.  As a  work-around, for many years, people like myself have been entitled to the postal vote. But in fact, this was a system that was set up for people who could not physically get to a polling station on the day of the vote. So it was used as a way of ensuring that people with disabilities, particularly in rural areas, could still manage to get a vote.

However, it was not a guarantee if you had a disability. A couple of years ago, in Dublin, my mother was turned down the postal vote because she had a guide dog and access to public transport.  It was deemed that she could get to her polling station without any extra assistance. So then it became an issue of: How are you supposed to vote privately when you can’t see the ballot paper?

Robbie Sinnott succeeded in taking a case to the Supreme Court [*] under the Equality Act [**]. It means that, this time around, in polling stations around Ireland, there will be a Braille and large print template that will sit over the ballot paper, which will facilitate people with visual impairments and blind people being able to vote on their own. However, this does not extend to the postal vote.

I am going to demonstrate to you why it does need to be extended to the postal vote. I have difficulty leaving the house sometimes. My pain condition fluctuates massively from day to day, as do my energy levels. It could well happen that, on the day of a vote, I would not be able to get out of bed or out of my house. I am also visually impaired. So I am going to show you why the postal vote needs to have that template as well, in order to make sure that I also have the right to a private ballot. Which, currently, I don’t.

[In this section, I am going through the papers in the envelope containing my postal ballot paper]

This arrived in the post the other day. [Opens envelope.] Inside, there is… well, there’s a big paper-clip, so I know there’s a load of things clipped together.

So, that is what looks like the ballot paper. Now, in this case, it’s a referendum, so there’s only a yes or no. That’s relatively simple for me to work out. However, I’ve been presented with ballot papers with twenty-plus names on it. In that case, trying to make sure that you’re writing in the correct box beside the correct person is a real lottery.

If there’s one thing an election shouldn’t be, it’s a lottery.

It also includes forms, and these forms and directions and all the rest of it – they’re all just in ordinary print.

I can’t read that!

In fact, I have to get my Personal Assistant to go through all the forms, fill out any bits of information that need to be filled out, and she just puts an X where I need to sign – and I sign it. Also, she has to determine which is the correct envelope to put the correct bit of paper in. I’ve been given two here and… [shrugs] I don’t know what’s on them!

And then… I think this is the instructions, which, again, my Personal Assistant has to read out to me.

Given that it’s a referendum, obviously it’s quite straight-forward. There’s a “Yes” and a “No”, and I’m pretty sure the “Yes” will be on top and the “No” will be underneath. Nonetheless, the principle of me also being able to access a Braille and large print template, which is a frame that would fit over the ballot paper… I think it has all the text, but in much larger print, and it also has Braille. I’d be able to lay it on top of the ballot paper, read the Braille, then there would be a nicely, clearly marked tactile box. I’d be able to stick a pen into the correct box and make my mark.

I can’t do that under the current system, and therefore the government has not yet actually extended the private ballot to all the citizens of Ireland of legal voting age in every other respect – apart from disability.

That needs to change.

Remember to get out and vote, however and wherever you’re doing it.

The referendum on repealing the 8th Amendment of the Constitution of Ireland takes place on 25th May, 2018… unless, like me, you’ve already voted!

[* The case was won in the High Court]

[** I was thinking in terms of the Equality Act 2000, which has had a number of updates since. The link takes you to the Irish Human Rights and Equality Commission, the statutory body for protecting and advancing human rights and equality in Ireland]

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

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. 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

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.

 

The Case for Braille

Thanks to the luscious Felicia Day and her Facebook followers, I have just discovered 64 Oz Games. This is a small company creating Braille add-ons for board- and card-games. As well as bringing attention to the service, I wanted to share this particular post about why Braille is the best tool for VIP access to printed materials. It also suggests that the more Braille is available, the more VIPs will learn to use it. This is something I think really needs to be promoted.

In Ireland, services for the visually impaired are still largely constructed on a medical model. I got totally fed up of being encouraged to use my “residual vision”. The assumption was of acquired sight los, and that it was better to be as “normal” as possible, not giving in to the blindness label. This is very close to the approach of doctors and physiotherapists suggesting anything rather than using a wheelchair. That’s even if not using a wheelchair makes you so exhausted and pain-ridden that your life becomes a round of therapy, exercise and pain management, with nothing else to give your life actual meaning. Sure, I could use the vision I have, and take 2 hours to read one page of print, then have to rest for days before reading the next page. I’d much rather read in a non-visual format, using my “residual vision” to appreciate how the sunset looks this evening.

Anyway, Here’s the blog post!

Why Such A Focus on Braille? – 64 oz games

Web Accessibility – why bother?

So you have a working computer, an internet connection and some assistive technology.  That means you can access any webpage, right?

Wrong

It can be hard to explain what “web accessibility” is all about.  I thought I might furnish you with a couple of examples and a couple of general pointers. First, the examples…

Bouncers of the Internet – No blacks, No dogs, No blindies!

I’m sure you will have come across a “captcha” – that image of warpified text that claims to sort the machines from the humans.  Maybe you’ve even had a whinge about how difficult they can be to see.  If you don’t know what I’m on about, here’s an example from a Google page:

Google Visual Captcha

I tried to understand the audio alternative about 15 times, then started to record my effort.  Bear in mind that I use JAWS, a screen-reading program that gives me audio feedback about what’s happening on my screen.  Every time you hear the word “Enter” and a slight pause, I have tried to submit my effort.  Instead of hearing the same audio again, a new audio file loads. I will give you some kind of prize if you think you can understand the words in any of the 16 captcha samples on this audio recording:

And that’s assuming the Captcha challenge even has an audio alternative, and that the button to request the audio alternative is tagged so that JAWS can detect it. These are by no means givens.

PDF – the universal format

PDF has come to be a standard way to access all kinds of texts. Sometimes, I receive a PDF attachment to an e-mail, which is supposed to carry all the information the sender wishes to communicate with me. Often, PDFs are used online for brochures and publicity – often graphics-heavy publications. They are also the standard format for academic papers and articles.

PDFs have plenty of accessibility features… if the author of the document has bothered to use them. More often, the author is concerned with how the text looks on the page, with neither thought nor care for the underlying code that orders the text. Weird things can happen to words in the most straightforward documents, with headings read as if each letter were on a separate line.

Here’s an example of how JAWS interacted with a price list for spa treatments. See if you can figure out what any of those treatments were or how much they cost…

Universal Access to All Knowledge?

The biggest kick in the teeth has to be my attempt to continue academic work. There are digital and online resources available now that I would have given selected body parts for when I was still officially a student. At the time, which is over 10 years ago now, I even attended conferences about digital humanities specifically to make known how they would be indispensible from an access point of view.

However, the effectiveness of digitisation varies wildly. The wonderful Internet Archive project, of which I’m a huge fan, still has no accessible means (i.e. keyboard-only) of uploading content. A search result has to be navigated using “G” to find graphics, rather than marking search result headers as headings. And then there’s the quality of the digitised texts themselves…

The quality of OCR (Optical Character Recognition) software seems to have progressed incredibly slowly down the years. Many OCR Engines seem to imagine that long text documents use an awful lot more random punctuation than I’ve ever come across. Exclamation marks (!) often appear instead of letters I and L, and capitalisation seems a matter of taste rather than of syntax. The word “arc” is apparently more commonly used than the word “are”… I could go on. Really. I could.

The fact is, if OCR is to have ANY value, it needs to be proof-read by a human being. Even then, JAWS will pick up the odd lower-case L that has been mistaken for an upper-case I. But just scanning a book and lobbing it up on the internet does not count as “Universal Access to All Knowledge”.

I have no desire to single out the Internet Archive as an offender. As I said, I love the project. It’s what the Internet was sent from Heaven to achieve. The most recent culprit (and I find at least one a week) for bad access I’ve run into (face-first) is Academia.edu. Never mind invisible buttons and menus that can’t easily be reached. Here’s an article I tried to read this evening. Apparently, it’s about Disability Arts. Here’s what JAWS says:

And here’s a few screen shots. I use visual themes on my PC which hurt my eyes less when I need to read the screen (at least I can still do that). The size of the text at the top of the first image should give you an idea of how big it has to be before I can read it. My mum uses similar settings, although she doesn’t use screen-reading software. So this is pretty much what she’d be faced with:

NOTE: This is NOT the fault of contributers to the site. It’s down to the programmers.

That’s all I have the energy for right now. This is a big topic, and it affects me every single day of my life. No doubt, I’ll need to rant on it again soon…

Mobility Allowance Scrapped

This was posted by my dear friend, Kiwi Katie, in her blog on her business site, Adaptable Solutions.  Katie works as an accessibility and inclusion consultant, and is not a woman to mess with!  She rants so well that I thought it simpler to re-post what she has written about the scrapping of the Mobility Allowance and Motorised Transport Grant.

Yesterday, the Department of Health confirmed mobility allowance and motorised transport grants would be scrapped, despite Ombudsman recommendation for them to be widened to include people 66 and over.

Worryingly it has taken 13 years, since the introduction of the Equal Status Acts, to realize that people with disabilities exist both under and over the age of 66. Did they imagine that a disabled driver suddenly would not require modifications to their car, over the age of 66? Or that people over 66 never develop disabilities? Honestly, this notion alone is quite laughable.

Assurances have been made that the €10.6 million fund, formerly earmarked for the mobility allowance and motorised transport grants, will be utilised to meet the transport need of people with disabilities. However if this was sufficient to meet the needs of all people with disabilities then the scope of these supports would have simply been widened, as recommended. No matter which way you look at it, the 5000 people that currently rely on these supports will face cuts.

As a wheelchair user and a business owner, I simply couldn’t live my life or do my job without access to a modified vehicle. As a rural dweller, even if public transport was universally accessible, the nearest inaccessible bus stop is over a mile away and services are limited to twice daily.

Whilst the government is all too willing to consider the financial ramifications of the Ombudsman’s ruling, they seem to be completely ignoring the social implications. People are being made prisoners in their own homes and this will impact on society as a whole.

People with disabilities are: Parents whose children rely on them to drive to schools, clubs etc.; Employees / Employers trying to get to work; Consumers that play a vital role in the local economy; Over 65’s with family and community roles that continue long into retirement; Children whose unlimited potential is being stifled.

What is most abhorrent is that the value of people, with disabilities (and their families), has been completely dismissed. In a time when the government is aggressively pursuing measures to bolster domestic activity, people with disabilities are isolated. Continuous cuts in supports and services render full participation in society and the economic recovery, further and further from possible. Not only is this counterproductive, it is simply cruel!

Arts Pilgrimage – Tomb of the Unknown Craftsman

I have just returned from two nights in London, largely on my own.  For anyone who’s travelled with a disability, you’ll know what a big deal that is.  Every micrometre of the journey had to be planned in advance; not just booking tickets and accommodation, but having to ring each company involved to check the level of accessibility.  And even with all that planning, it still wasn’t a straightforward journey.  not the worst I’ve been on by a long shot, but convoluted.
In preparing for the journey, I came across this incredible web site:
http://www.describe-online.com/
Their aim is to provide “access through information”, and they give detailed text descriptions of train stations, airports and other public areas around the UK.  Even if you’re not a VIP (Visually Impaired Person), have a look at it to see a model of Real Access.The sole purpose of my journey was to visit Grayson Perry’s exhibition, “Tomb of the Unknown Craftsman” in the British Museum.  Despite winning the Turner Prize a few years back, Perry is a sincere, witty and humble artist and maker.  His primary medium is ceramics, but in this show, he uses textiles, iron casting and a variety of other techniques.
The show covers so much, it’s hard to know where or how to start describing it.  He has made and revived a number of pieces which are displayed alongside artefacts from the British Museum’s own collection.  It celebrates the craftspeople and anonymous artists throughout history and across the world, whose works are most usually seen as a impersonal expression of their culture or period of history.  But it also explores the role of the craftsperson in creating and subverting myth, religion, gender and power.  At the core of Perry’s work is his 50 year old teddy bear, Alan Measles, who has the role of symbolic father and personal god.
In one interview about the exhibition, Perry describes two elements of his nature as “the punk” and “the hobbit”.  The punk is the subverter, the over-turner, the irreverend, socio-politically aware commentator; the hobbit loves beautiful things, opulence, tradition, fine skill and rich materials.  It’s a mix that really appeals to me.
One central theme of the exhibition is that of pilgrimage.  The once-in-a-lifetime journey one makes to rekindle inspiration and meaning by being present to a special place or object.  Perry examines the role of the contemporary artist as the saint or demi-god, with galleries as great cathedrals of cultural orthodoxy.  The situation of the collection within the British Museum is central to this theme, with the museum itself represented as a destination of pilgrimage.  As such, Perry has disassociated his work from those who seek to elevate the status of their work by placing it in the sanctified gallery-space, and instead placing it alongside the global heterogeneous traditions of the world’s crafts.So I had to make my own pilgrimage to experience this exhibition in its proper time and place.  Here are some thoughts I had along the way.

Day 1:

Day 2:

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

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

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

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

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

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

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

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

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

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

The DART Incident

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

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

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

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

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

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

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

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

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

O! What A Beautiful Dog!

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

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

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

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

(a) “That’s a beautiful dog”,

(b) “Does he take good care of you?”

and occasionally something like

(c) “God bless you”.

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

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

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

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

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

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

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

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

 

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