Ms Isolde Ó Brolcháin Carmody:

My name is Isolde Ó Brolcháin Carmody. Along with Emilie Conway, I am part of Disabled Artists and Disabled Academics. I am a visually impaired wheelchair-using artist. I have been working in the arts for more than 20 years.

My practice is informed by my unique perspective as a disabled person living in an abled world. My community arts practice focuses on voices that are routinely silenced and sidelined. I am sure that committee members have not heard of me or my work. This is partly because much of it has been undertaken without getting paid. If I get a grant from the Arts Council or if I get a commission, it is counted as means, not income, and is taken directly off the top of my blind pension. If an organisation employs me for a particular project, the maximum amount I can earn is €140 per week, after which whatever I am paid comes directly off the top of my blind pension. Our social welfare system expects me to let it know any time my income changes, but an artist's income changes all the time. Plus, informing the Department of Social Protection triggers a review. Reviews are intrusive, extensive and stressful. They can take months, during which time we do not know if we will lose everything on which we depend to survive.

This is all based on the principle that disability payments should be means tested. We also have to undergo medical audits and testing. We have to somehow prove that our long-term disabling conditions - I was born with mine - have not magically fixed themselves. Means testing is demeaning. It takes no account of the actual cost of being disabled, it takes no account of the real cost of living, and it takes no account of the fact that being disabled is not the same as not being able to work.

Last year, the initial estimate for the pandemic unemployment payment, PUP, weekly rate was €350. My blind pension is €203 per week. Even if I earned the €140 that I was "allowed" by the State, my income would still not reach €350. Added to this is the calculation that living with a disability costs up to €200 per week. By this calculation, I should be in receipt of €550 per week, which is more than double my blind pension.

There are the so-called secondary benefits: the medical card, rent allowance, the free travel pass and fuel allowance. These are the first casualties as soon as one starts earning. Their loss is more acute when one is disabled. We have fewer choices about where we can live and work because of an ableist built environment. We have fewer options for transport for the same reason. We interact with the healthcare system on a more regular basis than our non-disabled peers do, even for supports that are entirely non-medical. These are not secondary benefits to us. Rather, they are basic necessities of survival.

The precariousness of all of these systems keeps disabled people well below the poverty line and in a constant state of fear and anxiety. These fears are not irrational. Disabled people make up 27% of our homeless population, which is more than twice the national average. It is clear that this system is preventing disabled people from working, since Ireland has the highest rate of unemployment among disabled people in the EU.

The state of fear in which we live is exacerbated by the ableist culture within the social welfare system. One of the most common and pervasive forms of ableism that we encounter is when we are not believed and we are suspected or accused of lying. Every interaction we have when seeking support is based on a requirement to prove that we are not lying or cheating, that we really are disabled, that we are disabled enough, that we are not secretly millionaires, and that we, not doctors, are the experts in our own conditions and assessing our own needs. This is exhausting.

Would Ms Conway like to take over?