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]

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My manual wheelchair, decoratively inspired by Adam Hills

My manual wheelchair, decoratively inspired by Adam Hills

I went looking for this clip many years ago – here’s why Adam Hills is the spokesperson for Mutants!

 

 

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:

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.

Adam Hills – Spokesperson for Mutants

A couple of YouTube clips of Australian comedian Adam Hills’ stand-up show, “Characterful / Joymonger” – some of the best commentary on disability in mainstream media!

My manual wheelchair, decoratively inspired by Adam Hills

My manual wheelchair, decoratively inspired by Adam Hills

Thus far, I’ve been unable to locate a clip of his suggestion to replace the term “disabled” with the term “mutant”, because “you’d think twice before parking in a Mutant parking space”.

 

The beginning of Adam Hills’ stand-up show where he introduces his sign-language interpreter.

Near the end of the stand-up show, Adam talks about some of the ridiculous comments and bureaucracy encountered in relation to disability