'They don't know the reality': Artist living with ME says candidates need to listen to those who are disabled

'They don't know the reality': Artist living with ME says candidates need to listen to those who are disabled
Corina Duyn

Corina Duyn had to open a window in her home to speak to a general election candidate – she could not get to the door because she is disabled.

Corina, who lives in Lismore, Co Waterford, went from being a self-employed artist to needing help with her most basic needs.

After two years of pleading with the HSE's disability services, she can now leave her home with the support of a personal assistant twice a week.

“Candidates in the general election should listen to people like me. They don't know the reality of living with a disability,” said Corina.

She has lived with myalgic encephalomyelitis (ME) for over 20 years, spending three weeks in a nursing home in 2018 because she did not have enough home care to keep her safe.

“My carer used to only come on weekdays so over Christmas and the New Year I only had four days' care.”

Her GP, who visited her after Christmas and found she could not dress herself, arranged for her to go to a nursing home.

When a seven-day home care package was arranged Corina was allowed home again but she could not go out without a personal assistant.

Corina was assessed for a personal assistant last October but only found out just before Christmas that she had been successful.

Since last week two and a half hours of my home care package are called personal assistant hours. I now have a personal assistant but nothing has really changed because the hours have been given to my main carer.

“So it took two years to change the label from carer to personal assistant and now I can go outside but only for two and a half hours a week.”

Corina is a member of ME Advocates Ireland (MEAI), a voluntary group that wants to improve conditions for ME patients.

“I couldn't give up my fight with the health service because I am fighting for other people who have found themselves in the same ridiculous situation as me.”

Corina was born in Holland where she trained as a nurse and social care worker before moving to Ireland in 1990.

In June 1998 while applying for an art therapy course in the Crawford College of Art and Design in Cork, Corina was taken to hospital with suspected meningitis.

A diagnosis of ME was confirmed three months later.

Corina, who will be 58 years old in March, said her creative life had kept her sane but even that is a struggle now.

“These days I spend more time thinking about what I want to do rather than doing it because I have to pay people to help me work at home.”

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