It is "just wrong" that Government does not recognise the extra, and often hidden, extra costs disabled people face "through no fault of their own", says disability rights campaigner Shelly Gaynor.
A peer mentor with the Independent Living Movement and disability adviser to the Irish Human Rights and Equality Commission, Ms Gaynor points out the disability allowance, upon which more than 150,000 people depend, is just €203 a week. This is the same rate as jobseeker's benefit provided to people without disabilities.
“There is no recognition there of the cost of disability, which is just so high, whether it’s the extra cost of heating, food, transport.”
Asked about these, she says: “Heating is very important when you have limited mobility. When you move less, you are colder and if you are cold you can’t do your day-to-day activities. If you can’t do those, you lose function.
“Transport is huge. If you don’t have access to your own vehicle, or public transport if you don’t live on an accessible bus route, that means you have to take taxis. We’re talking about just getting out to places. That can be very, very costly and that’s for getting to and from medical appointments or even for day-to-day living, socialising.”
She says inadequate income, as well as inadequate supports, can have a detrimental impact on diet especially for those who need assistance with cooking. “If you don’t have many personal assistance hours and you need that to support you to cook dinner, you might have to get convenience, microwave food. That means you might have to eat less quality and cheaper food than you would really like.”
Lifelines
Other costs that some may see as optional, or even luxuries, are “lifelines” to disabled people, she notes. “The internet to a person with a disability is access to the outside world, to work, to friends and family. It’s not a luxury. The same with mobile phones. The costs can be huge when you’re trying to live on €203 a week.”
The Indecon report on the cost of disability includes quotes from some of the almost 5,000 people who participated.
“I just feel lonely, invisible and left behind. It is about scraping by and surviving and so I feel I am not on the same ‘track’ as everyone else,” said one.
Another said: “I think it is outrageous that as vulnerable adults, we are marginalised by poverty. Through no fault of our own, we have to rely on a meagre payment that maintains us in consistent awful poverty. It is soul destroying to be below the poverty line.”
The key measure needed, says Ms Gaynor, is recognition by Government that having a disability costs more than not being disabled.
“That is a fact. That needs to be factored into policy. These costs are for food, heat. These are lifelines, not luxuries.
“We are a long way off being able to fully participate in our society and cost is a huge factor in that. If you are on disability allowance, you are existing on below the bare minimum. There is no cinema, there is no coffee with friends. There is no living.”
