Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697751234020.pdf (Ireland)
Emilie Conway: Full Text to be Shared with Committee.

Oireachtas Joint Committee on Disability Matters: Thursday October 7, 2021 1. Who I am, brieﬂy.

I am an award winning vocal jazz artist.

But i’m also an artist in the broadest sense.

I believe in art and creative self expression as a way of life.

I sing, dance, write, act, paint, compose.

I’m mid a commission with the National Gallery, Music for Mondrian which includes podcasts and my original music response to the landmark exhibition.
In 2019, two years collaborative work with artists in New York resulted in my performance in Yeats and Tagore: Ireland Meets India in the America in New York Library for Performing Arts at the Lincoln Centre as part of Carnegie Hall’s Migrations Festival.

In 2017, I performed my work, You Won’t Forget Me, a celebration of Maeve Brennan, blending jazz, literature and traditional Irish music, at the American Writers’ Museum, The American Irish Historical Society and the Cornelia St.

Cafe.
Cafe.

(listed as one of the world’s best jazz clubs) and a sold out concert at our own National Concert Hall.

My own experience of a recovery from an eating disorder arising from discriminatory responses to having albinism inspired me to become accredited as an art psychotherapist.

I am passionate to use art, as it has always helped me, to help others heal, overcome challenges and transform pain.
My own struggles trying to grow as an artist with a disability and my concern at the relative lack of other artists and audiences with disabilities have pushed me into becoming outspoken about integration and representation, equity and equality of disabled people, as artists, audience and participants in the arts - inline with UNCRPD.

I have fought assumptions and worked hard for years to develop my talents, skills and others senses in order to participate and contribute to society.
Like most people with a disability, I work harder and longer than my peers to compensate for my disability and to be included.

The reward is not financial; rather it is opportunity; and the chance to grow as an artist in collaboration and co-creation with others.

These moments of success and elation don’t alleviate the challenges of the disability.

All of my work is sporadic, precarious and frequently low paid or unpaid.

I can also only work when I am well enough to do so.
Not being well enough has become a significant issue for me in recent years with frequent stress induced episodes of sudden sensorineural hearing loss and corneal erosion which together with my visual impairment, grinds my life and work to a complete halt and incurs huge medical costs I can’t pay.

Where is this stress coming from?

2.

The Paradox: Help yourself and lose supports.

Society can be judged on how it treats it most vulnerable.
Our States response to disabled people constitutes a contradiction in that, though considered vulnerable, and though there are many charities set up to help us, when we use our own agency we are threatened and penalised for our achievements and success by the withdrawal of supports - the very supports we relied on in order to succeed and achieve in the first place.

Disability supports are eroded as soon as a disabled artist is assessed as earning over 140E a week.

3.
3.

Barriers to Artist Formation, Development and Sustainability So how does a disabled person become an artist?

Making art costs money.

Development, training, lessons, instruments, continuous professional development is not cheap.

How does a disabled person do it?

• If a disabled artist wins an arts council award, commission etc this is treated as means and their supports, disability allowance partial capacity benefit or blind pension is reduced or fully withdrawn.
• • Our non-disabled peers can take on extra teaching work or run fundit campaigns to fund production of art work.

We can’t do this as if we do this is taken as means this is treated as means, and supports are withdrawn.

None of the free and subsidised courses made available to disabled people to rehabilitate them back into work through all the charities focus on artistic development.

You’re on your own if you are a developing disabled artist.
(as a side note, for a long time, we were only allowed to engage in rehabilitative work.

What an ableist fallacy.

No work would rehabilitate my congenital visual impairment sight and so how might I ever have been rehabilitated into a workforce I never had the sight to participate in from the get go? )

It is a sad point for years Isolde and I have been made to feel wrong for developing our talents instead of doing State supported rehabilitative work and training.
• • We have it in writing from the Blind Pension that a New Work Award from ADI of 8,000E the Blind Pension will see a reduction of the pension from 203e to 53E a week.

We do not have it in writing how this would affect secondary benefits but my personal experience is you lose them.

As a disabled artist you couldn’t be blamed for thinking the State does not want you to be an artist and certainly does not want your work.

4.

Disincentive and Right to Self Determination.


I’ve encountered the perception that benefits (they are not benefits, they are supports )disincentivise people.

I find this attitude deeply distressing and void of real understanding of disability.

This attitude is drenched in ableist privilege and it shows no respect for the disabled person’s right to self determination.

What about the right to self determination?

I do not see self determination as a choice.


I cannot stop being an artist, (believe me I’ve tried!)

nor can I stop having a disability.

My art is my lifeline.

My passion and pain goes into my art.

It’s not a choice!

Having and dealing with a disability is not a choice.

The State must support rather than thwart the self determination of people with disabilities.

5.

Impact of these conditions on Art and Artists And if you defy all these odds and still become an artist?
The fallout plays out in 3 unsustainable ways.

Sadly common to all 3 is chronic and corrosive stress and fear from the threat and penalty of the loss and erosion of supports and poverty.

1.)

Create work but refuse payment.

In this approach, the artist can live anxiety free when social welfare checks on them.

But this concession comes with a cost.

That artist will struggle to have their work be taken seriously or reach the audience it deserves.

This artist will be viewed as an amateur, a hobbyist.
Without being able to avail of legitimate opportunities this artist’s growth and reach is completely stifled.

This approach also uphold the perception that art by disabled people is not very good; fear of the system prevents the artist putting a proper value on the work.

This also works against the broader cultural aim of valuing art and artists.

2.)

Try to grow, with no legitimate basis to do, while attempting to hold onto supports.
In order to do this a disabled artist: • • • • Randomly accepts, turns down undervalue and refuses payments for work in game of roulette of constantly assessing how to accept just enough work to keep the security of supports Turns down media attention which every artist desperately needs for fear this media attention creates a perception of being more financially well off than the truth.
Live in fear that the next opportunity earned by good work attracts unexpected media attention an audit and loss of supports.

Live in poverty.

• 3.

Register as self-employed and have supports immediately eroded / lost.

It is worth noting recipients of Blind Pension because it is taxable are pushed into having to register as self-employed at very low additional incomes.

An annual BP amounts to 10,000E.

If an artist might earn an additional 6,000E, they have to register as self- employed.
Disability Allowance because it is an allowance and therefore not taxable.

Means testing and reductions apply pretty much immediately and do not take into account that a self employed disabled person is competing in an open market with non-disabled peers, with the additional cost and impact of disability, to make a living.

But, with a disability, it’s not a level playing field.

Precarity of health caused by wide implications of disability = precarity of work consistency = precarity of income.
The overall productivity level of a disabled person is not the same as for a non-disabled person.

Productivity is compromised by the extra energy needed to do it ALL while having a disability.

Disabled people in self employment for this reason are more likely to suffer burnout, ill health, and mental health problems that in turn impair their ability to work.

This particularly affects disabled artists, entrepreneurs, arts workers and creatives who are most likely to be self-employed.
• • While the State offers plenty of additional funding to employers who hire disabled people, there are no funding for supports for a disabled person who becomes self-employed despite double administrative load.

The State supports non- • • • • disabled employers to hire disabled people but not disabled self-employed people.
Although the reg’s for Blind Pension states support of self-employment, it is the experience of DADA artists that this is not true: The time frame of BP audits do not line up with Revenue’s annual assessment and the criteria of assessment also differ.

This brings about inaccurate and misleading assessment, resulting in an unfair adjustment of supports.
This also means that a disabled person has double the admin load of non- disabled peers and has to prepare 2 different sets of records for 2 different departments with different sets of criteria at different times of the year.

The double administrative load and uncertainty attached to the timing and fallouts of audits act as debilitating obstacles of discrimination against a disabled person trying to be self-employed.
This workload and anxiety attached to the uncertainty are detrimental to physical, emotional and mental health.

The double administrative load puts a disabled person who enters self employment at a great disadvantage to their non-disabled peers and is discriminatory towards disabled self-employed people.

Despite being self-employed, the mandatory change of income reporting within 3 months to Blind Pension remains.
This is wholly inconsistent with being self- employed as an artist where income varies hugely over a 12 month period.

Ultimate result is a living with relentless chronic and corrosive anxiety caused by complete insecurity, lack of stability and a level of poverty that, taken together with disability, is completely destructive of mental and physical - and creative health.

These conditions make disabled artists smaller, less confident and do not let us grow.
The conditions need to be changed, for us and for future artists and creatives who have a disability.

We may not be many, but our contribution is potentially great.

Not many will tolerate the chronic fear and corrosive stress of trying to grow as an artist on and off disability supports.

No one should have to.

Future artists shouldn’t have to.

6.


State Cultural Institutions, Public Sector Duty and EDI Policy It is little wonder therefore that disabled artists are so few and we are the lowest demographic to engage with the Arts Council’s funding.

Success carries too high a risk.

These systemic barriers have important implications for our State cultural institutions’ fulfilment of Public Sector Duty.
As long as these systemic barriers exits, disabled artists will not engage in EDI policies to include them - the risk is to great.

In this way, our State institutions fail to enforce Public Sector Duty.

7.

For the ﬁnal degradation: Relationships Many people with disabilities live alone.

Relationships are harder to come by when you have a disability.
Add to that another State imposed barrier to a disabled person entering into a relationship: Your partner’s means are assumed to become available to you and are assessed as additional means by Social Welfare.

Under this regulation, a disabled person risks losing their DA/BP by being in a relationship and with that, any shred of independence, dignity and agency.

8.
8.

Ableist Privilege, Blind to the Actual Cost of Disability = Failure to Thrive Does anyone who decides these conditions actually have a disability that might better inform their judgement?

Upholding these conditions shows a persistent and destructive ignorance towards the meaning of permanent disability, its far-reaching, life-long implications and its extensive cost.
The word for this kind of discriminatory ignorance is called ableism, the privilege of those who do not have a disability and it needs to stop.

We need to do better if we want a more diverse, inclusive society.

Having a lifelong serious disability is not like breaking an arm.

It doesn’t heal over time.

In fact, it gets worse.

9.

Actual Cost of Disability A 2019 study by Deloitte assigned a wellbeing cost of around €10,200 per year for those living with inherited retinal degeneration [IRD].
That is the cost for Equality.

The Oireachtas Disability Group estimates the cost of living with a disability alone to be 207E week 10,700E a year.

This is a non-negotiable cost.

Unless someone recovers from their disability.

The minimum wage is approx 19,000 a year.

However the average industrial wage is 24,000E a year.

Yet a disabled person the maximum a disabled person is allowed to earn without threat of erosion of supports is 203 = 140E a week which is 17,900E 10.
In Contravention of UNCRPD, Equality Law This is all morally wrong.

It is in contravention of Equality Law and the UN Convention on the Rights of Persons with Disabilities [CRPD].

As we all struggled to come to grips with the pandemic last year and we heard a lot about mental health, one of our colleague disabled artists was audited.
This artist protested the timing the fairness and humanity of this audit as she was seriously ill at the time, had no income and we were in the middle of world-wide pandemic!, No one wanted to carry out the audit including her Soc welfare inspector, but, "it's just the system," what could they do, she was told?

Now where have we heard that before.

Where have we heard that before?


Ireland has a horrific human rights record with how we treat our most vulnerable because we are compliant with destructive systems.

This desperately needs to stop.

I put in some PQs to Minister Humphreys regarding the necessity to audit disabled people during a pandemic and was told in reply that the department was fully compliant with restrictions.

In a typical display of ableism, Minister Humphreys took no consideration of the risk it put this artist at.
This disabled artist had a compromised immune system and had been cocooning but had to take the risk of catching covid in order to get help with the paperwork.

11.

The Vision: The Future, Inclusive, Integrated I have a vision for Art.

Art could lead!!!

Art is visionary.

Art could lead us into a more diverse and inclusive society.

Art holds up a mirror to society.


Why should audiences with disabilities attend art if this mirror doesn't reflect their experiences, reflect who they are, how they could be?

Imagine a world in which people with disabilities were supported, not thwarted, to reach their full potential as contributing artists to Ireland’s society.

Imagine the colour, the energy; the joyful, powerful, visionary transformation that could bring about in arts and in our society.

Imagine how it would change people!


It can't happen under the present penalising system.

The present system will only destroy artists with disabilities, stifle their voices, and mangle their contributions - as it very nearly did me.

People who have a visual impairment or any disability are not vision impaired.

We are the talent pool.

The pandemic forced non-disabled people to walk a mile in our shoes and we didn’t stop hearing how non-disabled people struggled with limitations to their freedom.
As disabled people we learn to accept the limits of our disabilities which will not lift when the pandemic ends, we discover creativity within these limitations, BUT we should not have to accept the ablesit systemic and structural barriers imposed on us that artificially limit and restrict us our right to self determination and to participate and contribute to arts, culture, and broader society.

We want to contribute, we can contribute.

we have abilities, intelligence and creativity.


It is hard enough as an artist to make a living.

Our earning power will always be undermined by disability.

But what if we had secure support to grow?

In a country where our economy is predicted to “take off like a rocket” we need to level the playing field for disabled people with non-disabled people and release the potential of disabled people into the culture and the economy.
Core disability payments like Blind Pension and Disability allowance should be a permanent unconditional secure support to level the playing field with those who have no disability.

It should not be means tested and should only be taxable.

Giving this allowance to artists and creatives who have disabilities would not make much difference to State expenditure, as most of disabled people are on these supports already.
But to artists with disabilities, it would remove the chronic and corrosive stress of the threat and penalty of losing supports and allow us to grow and, free to grow, become tax payers!

The State is more likely to make more money from us by supporting us to grow rather stay small.

After my own challenges of trying to grow up in Ireland with a disability and the distinct appearance of albinism in the antipathy of 80 / 90s Ireland, I feel very protective of children with disabilities.
I want them to have a MUCH BETTER childhood with real choices.

Imagine what message it would send to children with disabilities if we were to release the potential of artists with disabilities?

Imagine what a message of real hope, real choices, real inclusion, real diversity, and real embrace of these children, it would send.

“If you can see it, you can be it.” We hear this being used as an inspiration for women and girls.

There was no one ahead of us to inspire us disabled artists….
we are the first generation of “it.” That is why we are bumping up against the system.

In years gone by, most of us would probably be in institutions as that was how Ireland treated people with disabilities.

The system we are bumping up against is thwarting us because it was not built to support disabled people’s as active contributors in society.

Our disabilities won’t go away, with age, they get worse… but we are not defined by our disability.
We are our creativity, our talents, our experiences, our voices, our art.

Support us to freely contribute!

James Joyce was a disabled artist .. if he had no patron and was instead on the Blind Pension, victimised by its precarious and conditional support, do you think he would have the creative energy to write Ulysses?

How much art is not being created by disabled artists because of these penalising and punitive conditions?