Powerless minority deserves better treatment second time around
What makes this group special is that, while child abusers don’t usually come back 40 years later for another go, the one who abused them is now re-visiting each and every individual to do still more damage.
This one attacked several decades ago. It took children (and some adults, too) from their homes, subjected them to agonising tortures, disfigured and crippled them, robbed them of their full education, returned them to their families after critical bonds had been sundered, leaving them to make what they could of being physically disabled and discriminated against.
Although Ireland has apologised, created quasi-judicial processes and spent billions in the attempt to redress the injuries of institutional child abuse committed in the 20th century, as a nation we’ve made no such attempt to redress the problems initially caused and currently being exacerbated by polio.
When polio struck, children experiencing pain and fever were taken, often by horse and cart, to a fever hospital where some of them were incarcerated in “iron lungs”. These were like great metal coffins that pushed the patient’s ribcage in and out in order to get air into their lungs, since their muscles could no longer do it for them. The patient’s head poked out at the top, allowing them glimpses of other heads poking out of other machines. Otherwise, they were completely immobile, often for months, sometimes longer.
Poorer parents could not afford to visit, and so what the children experienced was unexplained abandonment. They underwent surgical operations, again and again, some with success, some with no outcome other than further misery. They were fitted with huge calipers and crutches. Sometimes, they were returned to their families years after the disease struck, when they had become strangers, so that parents and siblings had to learn a new relationship with them.
Schooling was not a priority, and the polio children rarely pushed the idea, since they encountered prejudice from the able-bodied community, who had no idea how to cope with their disability.
Discrimination sometimes leaves people out of relationships and communities. But it can also leave them out of the information loop. Last year, when I wrote in this column about Post Polio Syndrome, a process whereby patients find muscles strengthened by years of physiotherapy deteriorating to the state experienced directly after the disease first struck, I received a letter from a reader for whom the column had created a mental “click”.
She had been mystified by a five-year decline in her father’s physical abilities that seemed proportionate neither to the small falls he had experienced nor to his age.
COULD he have Post Polio Syndrome? Somewhere in the back of her mind was a reference to him being in hospital as a child. But he was never much for talk, particularly about himself. So it took a long time to winkle out that, yes, he had been in hospital, and yes, it had been polio.
It took even longer for her to extract the story of his family’s determination to deny the truth and persuade him to forget it. Quite apart from being a crippling disease, polio was socially unacceptable.
Like TB, it said something negative, not just about the patient but about their entire family. People crossed the road to avoid it and them.
By the time Post-Polio Syndrome came to hinder and hamper this man’s every movement, he had almost forgotten he’d had the disease. Like the majority of former polio patients, he wasn’t involved in any group or community of sufferers. So, whereas more informed former patients were able to say to their GPs or A&E consultants or rheumatologists, “Look, I have Post-Polio Syndrome” and help their medic get up to speed with the explanation of an otherwise meaningless cluster of symptoms, this man was passed from one medical expert to another without any gain, and by the time his daughter discovered the syndrome, was being treated for a mental illness on the assumption that in some way he was unconsciously causing his own problems.
More than 7,000 former polio sufferers live in this country. Not all of them developed the disease, which was often called “infantile paralysis” when they were children, but many of them did. They are beginning to suffer the second visitation of the disease: Post Polio Syndrome. Large numbers of them, in common with their GPs, have no idea that what’s happening to them relates to what happened to them as children or young adults.
Virtually the first indication of any interest on the part of the medical establishment in this grievous second tragedy is the sponsorship by the HSE of a book published this weekend by the Post Polio Support Group. Edited by Nuala Narnett and project-managed by Paula Lahiff (www.ppsg.ie) the book is a beautifully designed collection of first-hand accounts of what polio was like by individuals who contracted the virus. Men like Jim, who recounts the terror of being removed from the iron lung to have his clothing changed.
“This frightened the life out of me,” he writes, “as, at the beginning, I could not breathe at all once it was open… even severe pain can be coped with, but your next breath is very personal and something you cannot do without.”
Each account is of an individual living hell. What they have in common is where most of them end their autobiographical essays.
They talk of making the best of the hand dealt them, of gratitude to friends and family, of delight in the technology that gives them relative freedom and of the imperative requirement for optimism.
One contributor, Catherine, left hospital in her teens. Despite exclusion and mockery, she got herself through medical school, married, had children and became a professor in New York. She went skiing and played golf. Then, in 1986, she noticed she had a problem climbing stairs. She had a series of falls. None of the doctors who examined her had a clue. Eventually, she learned of Post Polio Syndrome.
“I am adjusting with the help of physiotherapy,” she writes, adding, without bitterness: “I have not been able to see a neurologist yet.”
Any society can be measured by its treatment of powerless minorities. Polio survivors are never going to represent a threat (or a promise) to any political party’s vote. Because they tend to be 50 or older, they are necessarily a diminishing group. A shipwrecked group who suffered grievously first time around and who now face a second shipwreck with an optimism which makes no sense — but is wholly admirable.
And who deserve a lot more from society than they’re getting.
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