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

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Further thoughts on the Disability Arts Sector in Ireland

After recovering somewhat from the shock of the Irish Arts Council withdrawing from the ADAI scheme, I finally remembered another piece of news from December that sheds a different light on this decision.

Arts and Disability Ireland announced the Ignite programme, three large-scale commissions of work by professional artists with disabilities for 2014.  I was interested when I first read the headline, “Ignite Commissions Announced: Largest ever investment in Ireland’s arts and disability sector”.  But I felt a bit let down as I read the accompanying press release, since it wasn’t a call for submissions, but an announcement of a fait accomplis.  Three established professional artists with disabilities have already been commissioned to produce high-profile works with community groups of people with disabilities in Cork, Galway and Mayo.

I have no wish to take away from the importance of high-profile professional art created in Ireland.  But it now appears that this project has been undertaken instead of continuing to support a range of artists with disabilities in progressing their careers.  With the withdrawal of the Irish Arts Council from the cross-border Arts and Disability Awards Ireland, there is no longer a support mechanism for those of us who are not yet (nor may ever be) in a position to work full-time as artists and get international recognition.

This got me thinking about an issue that has nagged at me since my days at university.  People with disabilities are not expected to have careers.  Some of us may get jobs, but we are not presumed to have a specialist skill-set, personal ambition or take a hand in deciding just what we want to do with our lives.  For example, an employment scheme set up by government agencies to “encourage” employers to take on one of these dregs of society is structured on the assumption that an employee with disabilities will be between 50% and 80% as productive as employees without disabilities.  The scheme is designed to compensate employers for the inevitable loss of productivity associated with taking on a lesser person. This precludes the possibility of an employee with disabilities being either as productive or even more productive than other workers.

The shift of focus from the Irish Arts Council from supporting career development to high-profile projects, which involve only 3 artists who are already established in their arts careers, is another example of the neglect of people with disabilities’ wishes and ambitions.  I feel that this initiative is a way of making it look as though we have a thriving disability arts sector while simultaneously withdrawing the means for developing that sector.  This feeling is intensified by the structure of the Ignite commissions, where the work will be created alongside voluntary participants from community-based disability groups.  The majority of us are expected to be participants, not leaders or instigators.

Again, while I support the overall work of Arts and Disability Ireland, (the Republic’s counterpart to the Northern Irish Arts and Disability Forum), I have long felt that they have not prioritised supporting the career development of artists with disabilities. Rather, their focus seems to have been on people with disabilities as spectators, audiences, passive consumers of “mainstream” art.  I have no complaint about the availability of audio-described theatre productions, (even if they are mostly in Dublin and mostly mainstream popular shows), but this does reinforce the vision of people with disabilities as a passive, homogenous mass without individual tastes and desires.

It’s unsurprising, since most impoverished and excluded groups are treated this way by a thoughtless “mainstream”.  Gay men are not expected to have various tastes in clothing and music. Moslem women are not expected to have differing opinions about their role in society. The poor everywhere are expected to take the scraps they’re given and be pathetically grateful. So while it may not seem as though this move by the Irish Arts Council and Arts and Disability Ireland will affect many people, it is nonetheless symptomatic of an out-dated attitude from which we in Ireland have never really broken free.

Local Coverage – A Small Step toward World Domination

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

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

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.

Pile of Rubbish

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…

 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.

Direct Payments – Insidious Erosions

Today, I will be attending a “Solidarity Event” hosted by the Network of Centres for Independent Living.  This event aims to bring together representatives from Centres for Independent Living from around the country with TDs and the media, to publicly lobby to protect services for people with disabilities and prevent massively unfair cuts coming at us from a number of directions.

Now, we need this network, and we need events like this, but I’m not in full accord with the agenda. Top of the agenda is a call for our “leaders” (elected representatives) to commit to bringing in Direct Payments as part of a Personal Assistance Act.  There is no doubt that a Personal Assistance Act is long overdue in Ireland to enshrine in law the human rights of people with disabilities that Ireland have signed up to in a number of UN documents.  Since 1994, these documents have stated that access to a Personal Assistance Service is a RIGHT (not a privilege or a luxury) for people with disabilities, and that such a service be provided on the basis of the needs of the person with disabilities, NOT according to the miniscule budget allocated on a year-to-year basis by the HSE.

My main point of contention with this as the top item on our agenda today is the emphasis and priority given to Direct Payments.  “Direct Payments” sounds great, doesn’t it?  I heard it described by one disability activist as a “no-brainer”.  However, it has a specific meaning when it has those capital letters, as well as a specific history.  And in the context of the rights of people with disabilities in Ireland and the services currently available to us, it also has certain implications.

First to its meaning.  Direct Payments (with its fancy capital letters) refers to a scheme whereby a person with disabilities would have their needs for a Personal Assistance Service assessed, and would then have a lump of money given to them so they can employ and pay a Personal Assistant privately.  Currently, we have to go through a service provision agency, be that the Irish Wheelchair Association or a Centre for Independent Living, who administer the service according to the budget allocated to each individual service user by the HSE.  Of course, if you are miraculously rolling in cash, you can buy the service from a private company.  So Direct Payments would mean cutting out the “middle man” of the service provision agency.  And this is doubtless ideal for some people.

The history of Direct Payments is an interesting one, given the current climate in Ireland.  They were innovated in Europe by the Swedish, who have been trailblazers in the Independent Living Movement, and whose social democracy has put most other EU countries to shame in terms of creating a fairer and more equal society with an enviable standard of living.  Sweden had already established a Personal Assistance Service before anyone thought of Direct Payments.  So how did the idea even arise?  Simple: Recession.  When the country hit a rough economic patch in the 80s, services for people with disabilities were suddenly under threat.  Direct Payments were thought up as a way of selling PA services to the government, while making it look like an overall saving for the exchequer.  It looks like a saving because suddenly everything gets measured in “unit costs”, the government is saved all that fiddly administration such as drawing up contracts, organising accredited PA training and filing all those employer tax returns.

So in the context of Ireland right now, this makes the rosy glow with which a government department might view Direct Payments seem more like a sinister fog.  All the talk in the HSE now is about “unit costs” – a way of seeing each individual with disabilities as just that – individuated, without context, without community.  It turns the notion of a social economy inside-out. 

It is fair to say that Direct Payments would be, at least in the short term, a pilot project, offered to those who want it.  But given the way disability organisations seem to be screaming for it and heralding it as the ultimate realisation of our human rights makes me feel that it could become the expected norm.  In that scenario, anyone who didn’t want Direct Payments would once again be “a burden”, an awkward stick-in-the-mud who wants everything handed to them on a plate.

Here’s how I would feel if I was offered Direct Payments today (or even next year):

·              I have better things to be doing with my time than to become an employer and administrater to the people who are supposed to make my life easier

·              My PAs would be people who showed up to my house every day, rather than part of a network of PAs and Leaders sharing the ideals of Independent Living.  Who do I talk to if I have issues with a PA?

·              Currently, the HSE grants me 15 PA hours per week, and the PAs get paid approximately 14 euros per hour.  The vast majority of Leaders would say they could do with more PA hours than they currently have.  But if I were given the cash to pay my PAs 14 euros an hour for 15 hours a week, then the government would be giving 790 more euros per annum for their pay than the government deems it sufficient for me to live on.  That just feels like a kick in the teeth.  What about all the hard work I do to keep myself alive and be active in my community?  Is that worth less? Or should I stop trying so hard to be a complete human being?

·              If the government gave me that 10 grand a year in a big brown envelope, I’d rather spend it on buying and maintaining the power wheelchair I need (which the government refused to give me any money for); I’d spend it on the ludicrously expensive bits of assistive technology I need, like 5000 euros for a 40-cell Braille display; I’d spend it on a nice big double bed with the mattress and position adjustments I need rather than accepting the government’s offer of a hideous, narrow, uncomfortable, un-sexy hospital bed which is actually more expensive, but the hospital ordered too many so they just want to get rid of them.

 

And that’s not even touching on the massive issues of transport and housing that all people with disabilities face every day of their lives. 

But who am I to swim against this particular tide?  Prominent voices in the disability community adore Direct Payments, and governments like it because it sounds “empowering” (in a capitalist kind of way), and adds up neatly in the books which have no column for a social cost / social benefit analysis.  And given the current blasted Irish landscape, it may well come down to accepting that or accepting a return to the bad old days of dank institutions and blind beggars grazing their donkeys on the long acre.

Please, sir, may I come in?

Bad Access is Bad Business

Here are some questions you can ask a venue or a service provider to find out if what they’re offering is genuinely accessible:

 

1)          Does your premises have level access from the street?

>  [i.e. no step or lip at the front door]

 

2)          If there is a step or lip, is there a ramp available at the premises to allow a wheelchair user to enter?

 

3)          Is there an accessible toilet on your premises?

>  Is the accessible toilet and the area leading to it kept clear of cleaning equipment? [Many premises treat an accessible toilet as a broom-cupboard, which means it isn’t actually accessible]

>  Is the accessible toilet clearly signed and kept unlocked? [If an accessible toilet is habitually kept locked, it can mean that someone wishing to use it has to “ask permission” to use the toilet, or the key can get “lost”!]

 

4)          If the premises has more than one floor, is there lift or ramped access to every level of the building which is open to the public? [e.g. the Garravogue in Sligo is mostly accessible, except for the “Library Lounge”, which has a few steps to it, and no ramp on the premises.]

 

5)          Is there a member of staff at the front desk who can greet and guide people? [A helpful member of staff who will ask anyone if they would like assistance can make up for a great deal of bad architecture!]

 

These are just a few questions which will get you a clearer response than just asking “Is your premises accessible?|.  By asking these questions any time you are scheduling an event, then more and more businesses become aware of what makes a real difference to people with disabilities, and people who are simply having a bad day!