I Can’t Afford to Get Paid

She says nothing.

I say nothing.

We both know there are no words

For the misery of women.

from Mamó: A Story of Geraldine Plunkett; ÓBrolcháin Carmody, Isolde (2016)

These are the final lines of my one-woman show, Mamó; A Story of Geraldine Plunkett. It is based on my great-grandmother’s accounts of her family’s involvement in the 1916 Revolution, including the execution of her brother, Joe Plunkett, as the youngest signatory of the Declaration of the Irish Republic.

You probably haven’t heard of my play, and you probably haven’t heard of me. But I’ve been working as an artist for over 20 years. I worked on this play from 2005 to 2016. As the story of a woman’s role in the 1916 Revolution, 2016 made a natural deadline to bring the work to audiences.

I worked with the generous and tireless Donal O’Kelly as director, and together, we devised techniques that would account for my impairments in producing the work. We recorded the script as an audio track because my visual impairment means I couldn’t read a print script. I performed the majority of the show sitting down to account for my chronic pain and fatigue. Finally, we filmed the show to minimise the physical toll that touring and performing would take on my body. All of these choices gave the piece a unique form and aesthetic of which I’m very proud.

I didn’t get to tour the play in 2016 as I had planned. This was largely down to funding: if I had received sufficient funding to tour the play, it would have counted as income according to Social Welfare. It would have counted as “means”, and my basic weekly Blind Pension payment (currently €203 per week), on which I depend to survive, would have been immediately slashed. So even if the tour had been funded, I couldn’t have afforded to pay for anything, let alone a tour. A gal gotta eat!

So without funding, and living below the poverty line on my Blind Pension, I couldn’t afford to tour the show during 2016. I couldn’t afford renting a wheelchair-accessible van plus driver to get me to and from venues. I couldn’t afford the hotels to stay in (B&Bs rarely have accessible bedrooms). I couldn’t afford the research to find theatres with accessible back-stage areas. Besides which, in 2016, I was waiting for a new powerchair, since the old one didn’t work in the rain. And I wasn’t granted extra Personal Assistance hours to help with navigation when my guide dog got too sick to work and then died.

Over the last 18 months (since the first lockdown), I have been sought out and offered money for my arts work like never before. The switch to online living meant that I could work without the constant torture of navigating a world built by non-disabled people. So I decided to register as self-employed with Revenue. For anyone else, it would feel like my career was really taking off, and that my work was being valued.

But, as a disabled artist, this is fraught with dangers. Any earnings over a mere €140 per week (recently upped by a generous €20) start to count against my basic Blind Pension income. And once this income starts reducing, the secondary benefits are immediately put at risk too. I have been on Blind Pension (BP) since I turned 18, and have relied on it, (along with the Free Travel Pass, Medical Card and Household Benefits Package counted as “secondary benefits”), to survive. (Interesting side-note: I am one of only 1,069 people currently on this strangely anachronistic payment, which is overseen by the Old Age Pension office. It’s different to Disability Allowance, for no logical reason I can ascertain).

And while I feel like I’ve been earning money for my creative work lately, here is a list of the things my paid arts work have paid for over the last 18 months:

• New underwear
• Dog food and vet bills (for my guide dog)
• An update to my screen-reading software (the latest release was the first to support hosting Zoom meetings)
• An iPad (the only device with good built-in accessibility)
• One phone bill (my phone is also my internet connection)
• Some toiletries

The screen-reader and iPad are tools without which I can’t work at all. To be honest, I couldn’t actually function day-to-day without them. There is no dedicated funding for assistive technology for the blind, yet we get left further and further behind our non-disabled peers without it.

The rest are the kinds of expenses you might hope would be covered by a basic social welfare payment. But they aren’t. The basic weekly rate is €203. Even if I was earning that magical extra €140 per week, it still doesn’t add up to the €350 per week which was deemed the minimum ammount for PUP when it was introduced. And living with disabilities is expensive! Note, for example, the need to use Apple products as the only devices guaranteed to have a high level of built-in accessibility.

There have been recent changes to the laws governing Disability Allowance (DA), called “Catherine’s Law”, which mean that a disabled student or researcher can take up a scholarship or research grant without it counting against their basic DA rate. There is also a disregard of €50,000 in savings which will not count against DA. The rate for the 1,069 Irish people on Blind Pension is €20,000, and Catherine’s Law has not been extended to those on BP.

There has also been recent coverage of a pilot scheme for guaranteeing a Universal Basic Income (UBI) for artists. It has already been pointed out that this scheme will not benefit the lowest-paid artists as it will impinge on the secondary benefits associated with Job Seekers’ Allowance, such as Rent Allowance payments. This applies equally to disability-related payments.

Catherine’s Law does not benefit disabled artists. UBI does not benefit disabled artists. Getting paid for work does not benefit disabled artists. That is why a group of Disabled Artists and Disabled Academics (DADA) has begun meeting to find a way to change these repressive and discriminatory systems.

However, most disabled artists I have met with to discuss these issues are afraid to publically discuss them. We are afraid that it may trigger a Social Welfare review into our meagre finances. We are afraid that it may brand us as “difficult” with funding bodies. And most of us are keen to spend our energies in our arts practices.

To me, these are screaming alarm-bells of systemic and institutional oppression of a group of people: disabled people. If Ireland is serious about being a signatory to the UN Convention on the Rights of Persons with Disabilities (UNCRPD), the government will undertake an urgent restructuring of how disabled people are supported. In particular, Article 27 of the Convention which guarantees our right to meaningful employment.

Blind Pension and a Free Travel Pass felt like independence at the age of 18. But I’m in my 40s now. The gradual erosion of disability-related benefits and services, especially since 2010, means that I’m living much further below the poverty line now than I was then. And I need to work. I can’t sit around doing nothing. If you are an artist, or live with an artist, you’ll understand why. I will quote my old comrade, Tim Hannon, from a piece called “Why I Write” which we published in our independent school literary magazine, EatMeDrinkMe:

Sometimes I think I confuse the need to eat with the need to write… Why do I write? I write because I’m hungry.

“Why I Write”, Hannon, Tim; EatMeDrinkMe, Dublin, 1994

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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!

 

 

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.

Sad News for Irish Artists with Disabilities and Deaf Artists…

I have just received this via e-mail from the Arts and Disability Forum, from whom I am now even more glad to have just received funding! This is a dark day for Disability Arts and artists with disabilities and deaf artists in Ireland.

 

Arts Council of Ireland withdraws from cross border awards scheme

 

A unique cross border scheme which has benefited dozens of disabled and deaf artists has come to an end after An Chomhairle Ealaion, the Arts Council of Ireland announced it was withdrawing its support.

 

The future is now uncertain for disabled and deaf artists as this signals the end of the Arts and Disability Awards Ireland (ADAI) scheme which has allocated £526,274 to 216 projects on the island since its inception.

 

The decision was revealed in a letter to Chris Ledger, Chief Executive of the Belfast-based Arts and Disability Forum (ADF) which has managed the scheme on behalf of both Arts Councils since the year 2000.

 

The ADF received the news from the Acting Head of Arts Participation of the Arts Council of Ireland. The Council’s letter stated that, as a result of an 11% reduction in its own funding, it has decided to explore alternative ways of meeting the needs of the arts and disability sector in Ireland.

 

Ms Ledger thanked the Arts Council of Ireland for its support over the years, adding that the scheme had been valuable in promoting the careers of disabled and deaf artists.

 

She said: “Of course we understand the pressures on funders but it is sad that the scheme is ending. The ADAI programme has been extremely valuable in providing dedicated year-round support for disabled and deaf artists who are on a professional career path. It has enabled them to compete in a very tough market.

 

She continued “Artists from both sides of the border who have received ADAI bursaries have gone on to win awards, commissions, recording or publishing deals and major grants. For example one of ‘our’ artists was shortlisted for the Hennessey Literature award last year, two albums were released, a Wellcome Trust award was granted and artist who got started with an ADAI grant has won no less than seven international awards in the past couple of years! The funding loss is not about supporting us as an organisation; the ADAI funding wasn’t about us! It levelled the playing field and enabled talented artists to overcome barriers that they face simply because they happen to be disabled or deaf.

 

The ADAI scheme itself is a past recipient of an Aisling award for cross-border co-operation.

 

Chris Ledger pledged that the ADF will continue in its work to promote excellence among artists who are disabled or deaf, saying that the ADF is now in discussions with the Arts Council of Northern Ireland, exploring new possibilities for Northern Ireland artists.

 

She added: “We are saddened that this important cross border work has been lost but the ADF will continue to keep in contact with artists in the Republic and even though we can no longer offer money we will still showcase their work through our gallery space and events like Bounce! Arts Festival.”

 

Ms Ledger started to break the news to artists at the launch of ‘Ebb and Flow’, a new exhibition of landscape paintings at the ADF Gallery in Royal Avenue by talented visual artist Cathy Henderson, a previous recipient of an ADAI grant. Ms Henderson is an ideal example of how disabled artists have forged positive relationships on both sides of the border and gone on to thrive.

 

Born in London and living in Dublin, in 2010 she was awarded a commission from the Museums of Northern Ireland and also an RoI Artist in the Community Award. Since 1998 Cathy has taken part four times in the Great Northern Arts Festival in Canada and in 2011, with funding from Culture Ireland, she held a solo exhibition of relief prints in Whitehorse, capital of the Yukon Territory. She recently completed a commissioned project with the Dublin painter Robert Ballagh to design a commemorative artwork celebrating  the centenary of the 1913 Lockout and the establishment of the ITGWU.

 

Messages of support for the Arts & Disability Forum’s work can be sent to chris@adf.ie.

 

Notes to Editors

 

The ADF has received a total of 390 applications since the ADAI scheme began in 2000. From that, 218 projects from both jurisdictions have been awarded a total of £526,274.

 

For more information: contact Gary Kelly on gary@kellypr.co.uk, 02893340275 or 07581282723

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:

HIDDEN HEROES: Are you a Secret Superhero?

Do you have a secret identity hidden from friends and family?  Do you have talents and abilities that seem almost supernatural to others?  Do you fight for social justice and dream of a fairer world?  If your answer is “yes” to any of those questions, you might be a superhero and not realise it!

In the quest for positive images of disability in culture and the media, one might not think to look in the genre of superhero movies and comic books.  Yet here is where we find characters such as Professor Xavier, leader of the X-Men, who is a wheelchair user with extensive mental powers; and Dare-Devil, blind lawyer by day, vigilante crime-fighter by night.  It is easy to spot these characters as having visible and recognised disabilities, but there is more to it than that.

The social model of disability (as opposed to the medical model) states that disability arises from the failure of mainstream society to incorporate physical, sensory, neurological and intellectual diversity within its structures.  If the structures and institutions of society were designed differently, people who now have disabilities could live as equals in the mainstream without being at a disadvantage.  Superheroes live outside of mainstream society because their physical differences – flight, invisibility, telepathy, quick reflexes – are too far from social “norms” to be integrated into the community.  For this reason, most superheroes have one “normal” identity with which they interact according to social expectations, and another secret superhero identity, where they can use their talents and skills to benefit society without that self-same society being aware of it.

Many people with disabilities with whom I have spoken feel a division or split in their persona; demonstrating to one part of society their disability and needs for support, while simultaneously demonstrating to others their independence and capabilities.  As a visually impaired person, I catch myself sometimes putting on an act of being “blind” – not making eye contact, very deliberately navigating by touch – so that people around me will be aware of my visual impairment without accusing me of “faking it”.  At other times, I find myself utterly belittling my disability to demonstrate that I am a capable, talented person; to show to others who I am without them becoming fixated on a white cane or guide dog.  The same is true of Dare-Devil (played by Ben Affleck in the movie), who uses a white cane for mobility when he is plain old Matt Murdoch, the lawyer, but who leaps from building to building using touch and hearing to fight crime by night.  Despite the cliché of those with sensory disabilities having almost super-human powers in their other senses to compensate, I have to admit that others often find the acuity of my hearing uncanny.  As if that weren’t enough, the same genetic condition that reduces my vision and makes me hypersensitive to pain, also gives me a hyperacuity in other senses.  Until today, when this subject was raised, I did not think it extraordinary  that I can smell cancer.  I can see how this ability might seem supernatural to others.

Superhero personae, as well as those of super-villains, are often created through trauma and accident – the Joker’s accident at a chemical factory; Batman’s witnessing his parents’ murder, inspiring a drive for vengeance.  However, it can just as often be a genetic mutation – the X-Men are all mutants shunned from mainstream society; the TV series “Heroes” where genetic mutations cause a number of “powers” to manifest.  It is particularly interesting to note that a character such as Daphne from “Heroes” develops a superpower (she can run mind-numbingly fast) in contrast to a pre-existing condition of cerebral palsy.  The film “Unbreakable” by M. Knight Shyamalan, starring Samuel L. Jackson and Bruce Willis, revolves around Jackson’s character, nicknamed “Mr. Glass”, seeking out and encouraging Willis’ character, who has never been sick a day in his life.  Mr. Glass was born with osteogenesis imperfecta, giving him brittle bones and limiting his physical life.  Being a fan of comic books, he believes there must be someone out there with an “opposite” condition to his own.  He pushes the “unbreakable”, super-strong Willis into taking a super-hero crime-fighting role, allowing Mr. Glass to assume the position of “super-villain”.  This film quite clearly shows how the medical model of disability has pushed Mr. Glass’ character into a bitter and resentful pursuit of life: unfortunately, quite a common “super-villain” origin story.

Another aspect of the superhero myth with which people with disabilities can identify is the realm of bionic implants and prosthetics.  The X-Men’s Wolverine has an implanted skeleton of adamantium which gives him inbuilt claw-like weapons; Batman’s love for gadgets and gismos is well-known; and Robocop is brought back from the edge of death by being fitted with a range of prosthetics and computerised implants that make him the ultimate crime-fighting machine.

So, does your wheelchair or prosthetic limb enable you to go faster than your flat-footed compadres?  Does your ability to interpret sound and have a 360° awareness of your surroundings mean that you know what’s going to happen before everyone else?  Does your unique way of understanding and perceiving the world around you enable you to come up with solutions that “normals” would never think of?  Your secret identity may be so secret that you don’t even know it yourself…

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

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