Polio - The Late Effects Reality

QUOTATIONS FROM SURVEY RESPONDENTS

Polio

"It was never diagnosed but both brother and sister lost their walk later in life."

"Mother noticed that I was walking a little unsteady as if I had a stone in my shoe."

"My Polio was contracted when my daughter was given the sugar lump at the clinic. It was her booster shot."

"I get tired all the time."

"Does the Health Service ever follow up Polio victims? Sought files under Freedom of Information – told none exist."

Transport

"Difficulty with transport to and from work."

"Why don’t they pay mobility allowance to people over 65? Free travel isn’t much good to folk in a wheelchair, particularly in the country."

"I would be interested in being assessed for a scooter so that I could go to Mass on my own!"

Finances

"Very difficult to survive on disability benefit."

"Main worry is lack of money, due to small pension allowance."

"The hidden costs are high."

"The cost of disability with regard to everyday living is more expensive, e.g. house maintenance, gardening, and window cleaning – have to be paid."

"Cannot think of the future as I am trying to survive basic worries – if the weather gets cold, will I have enough money for heating?"

Employment

"Considered unemployable – so started printing as a Sole Trader – then partnership, then Limited Company. About 38 years in total."

"Got 8 Honours in the Leaving Cert. and was accepted for training as a National Teacher but was rejected by their medical doctor!"

Attitudes

"Feeling of shame when home from Cappagh Hospital and ignorance of people about illness. No-one ever explained that it was not the fault of the person suffering from the illness."

"It’s clear I have an impairment which is my condition. My disability is my society, which has disabled me through attitude, communication and access ………. I would not see my condition as an illness."

Assistance

"Fiercely independent – would not even consider having home help!"

"(I have) …. a bit of a difficulty accepting help, as I would rather do it myself. But I am willing to sacrifice pride to keep the place clean."

"I believe the only Nursing Home I want is my own home with all my things around me."

"There’s no point (...seeking assistance). Forms are not geared for what we need."

The Future

"I am being very positive and don’t think my condition will deteriorate much."

"I hope to be much the same as I am now. If I am, I’ll be lucky."

"I will try to stay independent and cope. Family support is vital."

"I try to maintain a positive attitude and try not to be negative, I’m fortunate to have a great support network around."

"Will have to be careful in what I can do – I’m always trying to exceed personal limitations."

"Have some concerns about the future. At present, rely primarily on husband for assistance. What happens if he can’t help?”

Social

"It’s the social side of it, social and emotional side of it …… you don’t necessarily know what you need emotionally."

"Things are just gradually going down and I’ll just have to adjust to managing it."

"Peer support is very important as it is non-judgemental compared to general support groups."

"Why do people with disabilities always have to fight for their entitlements?"