As if polio wasn’t hard enough... ‘My family were strangers I saw now and again’
Maureen McGovern was one of the last children in Ireland to catch the once-dreaded disease. But, having fought to cope with her disabilities, educated herself, and insisted on working all her life, she’s now facing a new battle – against a charity that sh
MAUREEN McGovern was just seven months old when she contracted polio in 1958, during one of the last Irish epidemics of the once feared virus. A day or so later her six year-old-sister was hit by the same disease, although it would take some time before their mother could persuade the local GP that there was something seriously wrong with either of them.
‘I was out of sorts and in pain whenever someone touched me,’ explains Maureen, ‘The doctor was called but he said it was only a cold. My mother called him to the house again, and again he insisted: “It’s only a cold, she’ll be all right.”
‘Then the same thing happened my sister, she was in huge pain. When the doctor came this time, he told my mother she was being a nuisance. The fourth time she got my dad to bring the doctor down as she was afraid we were going to die. We must have been in a really bad way at this stage because he called immediately for an ambulance and we were brought to Cherry Orchard Hospital.’
‘Both of us were put into isolation, my mother couldn’t come near us, she could only look in through the glass. It must have been so hard for her, I was only seven months old.’
Maureen’s sister, although at one stage at risk of dying, fully recovered and returned to their home in Finglas, Dublin. Maureen, however, was ‘reshaped’ by the virus.
‘I got the worst effect of it,’ she says. ‘It restructured my arm, turned it back to front and my left leg was badly affected. It attacked the muscles, so they had to be rebuilt, and some could only be rebuilt to a certain level.’
Maureen, still just a tiny infant, was eventually transferred to the Orthopaedic Hospital in Clontarf, on Dublin’s northside. She would spend altogether 12 years there full-time, living on a ward with several other children, receiving daily physiotherapy that helped her to learn to walk with the aid of a calliper on her leg.
Her mother, who worked in the CIÉ canteen and over the intervening years ended up with seven children at home to take care of, did her best to make it in at least once a week to see Maureen. But life was difficult for the family — although Maureen’s father had a job at the Cadbury’s factory he also had a drink problem, and her parents eventually separated.
‘I don’t know how we caught the polio virus,’ says Maureen. ‘I once thought it was because we came from a very poor area, but I know it affected people right across the whole social spectrum. There were about three or four people on our road who got it at the same time, so I did often wonder if it had anything to do with the area.
‘I got back to our house for one week at Christmas and maybe two for the summer holidays. My mother would bring one of my siblings up to me at the hospital each week to try and keep that family connection going. But to be honest, I didn’t see my family as my family, they were strangers I saw now and again. When my sister turned 14 my mother started to send her into me as well, so I’d have two visitors a week. She really did try her best.’
Maureen’s childhood may sound like the plot of a Frank McCourt novel, and she admits the isolation, institutionalisation and grinding poverty she dealt with once she was moved home have all left their mark, but her current disposition is as far from selfpitying as you could find.
Indeed she gets a little prickly when I suggest that life has possibly been harder for her than some others. She quickly retorts: ‘I don’t think I was given a raw deal, but I understand what you’re saying. But on the other side of that, I would not like to be anything else other than what I am.’
There’s no denying Maureen’s life so far has been full and rewarding, despite the many obstacles that have been put in her way.
The 60-year-old lives on her own, in a warm and inviting home in Ballyfermot. She has had a variety of successful careers, from a secretary to a telephonist, to a disability equality trainer and a community development worker. She has been engaged twice, and had ‘many, many relationships’ through the years but is now happily single.
But perhaps most importantly, she has been an activist, pointing out the inequalities that people with disabilities in Ireland face every day, and campaigning for a fairer system and attitude towards those who are not able-bodied and need extra resources and help.
Most recently she has turned her attentions towards a campaign she has intimate knowledge of — survivors of polio demanding supports from the disability charities, The Polio Fellowship of Ireland and Rehab, which they believe they are owed and entitled to.
It’s a bit of a complex tale, but according to the Justice for Survivors of Polio group, the PFI — which was set up in the 1940s to help polio victims and their families — bought Park House in Stillorgan, south Dublin, in the 1960s as a centre for their members. They now estimate the property is valued at €8million.
In 1986, the PFI merged with Rehab Group and ‘very soon after ceased providing services to polio survivors’. Polio was pretty much eradicated in Ireland during the 1960s thanks to the success of vaccinations. There have been a couple of cases reported over the years, but often these are people who have moved here from other countries. Although many of those who contracted the virus fully recovered, many others were left with disabilities, while others have in only recent years begun to suffer with post polio syndrome.
The Post Polio Support Group (now Polio Survivors Ireland) was founded in 1993 by survivors who needed support. They approached the PFI for support and secured funding, on average €35,000 a year, to provide help for members.
But in 2014, Rehab and the PFI announced they were stopping all funding to the Post Polio Support Group. And since then, according to the Justice for Survivors of Polio group, Rehab ‘have consistently refused to negotiate’.
Over the last 13 months survivors of polio and those with post polio syndrome, which is estimated to affect over 7,000 people in Ireland, have protested several times at the Dáil and at Park House, which is now a Rehab centre.
They want financial help to provide services like physiotherapy and mobility aids, and they claim there is about €1.5 million in the PFI’s reserves, money they helped to collect as children through countless fundraising efforts.
‘Money we raised as children for the PFI is being retained by Rehab due to its merger with the Polio Fellowship of Ireland,’ said spokesperson Susan Dowling. ‘However they are now not providing services to us.
‘We are an ageing group, struggling to maintain independence and to remain mobile with varying disabilities. If these assets were used as they were intended, it would actually cost very little but give some comfort and dignity to those of us who are left.’
The Rehab Group this week told the Irish Daily Mail: ‘As demand for polio supports changed and evolved the focus turned to other areas agreed under the Memorandum of Association between PFI and Rehab Group, such as providing services to people with other
‘We’re ageing and struggling to stay independent’
forms of disability and social deprivation. The PFI no longer provides supports to any persons with disabilities, while all Rehab Group services are provided through funding from the HSE to meet an established need in the community. In conjunction with our funder, the HSE Rehab Group provides person-centred services that cater to the individual, this would of course extend to people with post-polio syndrome should an individual be referred to our services.
‘This €1.5million referred to is HSE funding provided to deliver the many supports we provide to people at Park House, many with very high support needs, it is not reserves or income.’
They also said they had to pull their annual grant to Polio Survivors Ireland because funding they had been receiving from the Charitable Lottery Fund was stopped.
‘The cessation of the Charitable Lottery Fund had a significant impact on Rehab’s funding stream,’ they said. ‘And as financial sustainability is a key pillar of our longterm strategic plan, we could no longer continue to make these donations. We have no legal obligation to provide funding to Polio Survivors Ireland and we believe it would be inappropriate for us to use our funding to grant aid another charity.’
They also refuted the claim that they have refused to negotiate with the survivors.
‘We have made several efforts to establish a positive relationship with the group in a bid to get clarity as to what exact kinds of supports or services the group is seeking. We are unsure what exactly the group is seeking to negotiate,’ they told the Irish Daily Mail.
‘Aids and appliances, such as those requested, would have to be applied for through the HSE. We continue to be willing to engage in constructive discussion.’
Maureen McGovern’s needs are certainly increasing as she gets older. She is now a wheelchair user who requires five different personal assistants to call in on her regularly to help her wash, get dressed, cook and all the other general chores of life. She is in the process of employing two more.
‘My symptoms are getting steadily worse,’ she says. ‘Up to two weeks ago, I was able to move from my bed to my wheelchair, I can’t do that any more. I have a hoist and I have to get an orthopaedic bed, which will come from the HSE because I’m on social welfare.’
Maureen is resolutely matter-offact as she discusses her situation. But it can’t be easy for this fiercely intelligent woman to be in the midst of losing the last remnants of independence and privacy she has fought so hard for all her life.
In her mid-teens she was sent back to live with her family in Finglas, a group of people she barely knew and who, like many in that era, were living in serious poverty.
‘I’d heard stories about my family during those years having very little to eat, no clothes to wear, heat. But I had all that. I’d a clean bed and I was looked after.
‘To be honest, I had a great time at the hospital, I loved it. People’s experiences are very different but for me, it was living in this kind of mansion with a veranda and it was absolutely beautiful, with gorgeous gardens and trees. Hospital was extremely safe and coming out of there was a nightmare for me. From my mother’s side it must have been awful, all that attention she had to give me, and how that affected the others.’
By this stage her parents had separated and with eight children to feed, things were very tough.
‘When I came home there was scrambling for food at times and I shared a bed with four other people,’ she explains. ‘We’d have coats over us at night and I suffered with the cold because of the lack of circulation in my limbs. Although I could walk with the calipers, climbing stairs was difficult. My mother had to lift me on her shoulders like a bag of potatoes up two flights.’
She did two years of secondary school. ‘I started there at the age of 17,’ she says. ‘I was in a class with 11 and 12-year-olds. On one level it was grand because at least I was there, but on another level I was quite mature, so it was horrific. I also found the lessons very hard. So after two years I got out.’
Things were also increasingly difficult at home, living with this family she had missed out on growing up with. She began to act out and eventually, with the help of a social worker, she got a place at Park House in Stillorgan.
‘I couldn’t stay at home any more, I think I was too institutionalised,’ she says. ‘And only for the Polio Fellowship, I would have had nowhere to go.’
She moved into Park House when she was about 19.
‘The whole idea was to train, educate, rehabilitate, support people who’d had polio and their families,’ she says. ‘I stayed there for about a year and then went to live in Sligo for two years where I lived in a Rehab hostel and learned a skill, I became a secretary. Then I came back to Dublin, lived in the Homeless Girls Society for a while. I got a job and moved into a bedsit.’
From then on Maureen began to support herself. ‘Polio was once seen as a long-term illness, but then it was taken off the list, because there were no more people getting it,’ she says. ‘So we couldn’t get medical cards if you started working. It meant I was paying for everything, like the shoes that had to be made for me.
‘I got a lot of help from the PFI, money for heat, clothing, it was really important to me. They helped me out with calipers, boots, equipment. If I didn’t work, I would have got disability benefits, but because I chose to work, I had nothing. But I needed a job, for my own self esteem.
‘I was a telephonist for 25 years and I loved it. I also went back to school and did a certificate in disability studies at UCD, I did lots of training about lobbying and funding. At one point I was secretary of the Forum of People with Disabilities. We fought for a lot of the legislation that’s out there now.
‘Then I was a disability equality trainer and after that I became a community development worker.’
In her early 30s, Maureen began to show signs of post polio syndrome.
‘I was beginning to find it hard to walk far and was feeling more tired,’ she says.
About 20 years ago she started using a wheelchair but continued to work up until 2012.
‘Since I gave up my job I’m back on invalidity pension,’ she says. ‘It got me a medical card, which is all very well, but that doesn’t supply extra heating. And I’ve nowhere to go for help — the Polio Survivors Group are not getting much money so I feel guilty asking them for anything. They do help me with massages, about €400 a year, which I need to maintain.
‘My invalidity pension is about €203 a week and this house is social housing that I pay €40 in rent for each week. My biggest expense is heating. Because of my circulation I feel the cold very badly so I spend about €55 a week on heating. The Irish Wheelchair Association, through the HSE, pays for my personal assistants. I can just about survive on what I have.’
What would she like to see happen with her latest campaign?
‘I think the PFI should sell off the land in Stillorgan to Rehab at today’s prices and then give the money to the polio survivors,’ she says. ‘I’m not saying the Government is responsible for allowing the virus to come into the country but the PFI was set up to support us and there’s a duty of care. The Government should be instructing Rehab to buy that property and then the money should be given to the survivors group.
‘I just feel at the moment that we’re not being cared for and that’s not right,’ she adds. ‘You should be able to have a disability and get the help and support that we are owed and need. No wonder we reject disability in our society, we’re given a raw deal and people can see that.’
‘My mother had to lift me like a bag of potatoes’ ‘I needed a job for my own self-esteem’