Unfashionable disease victims should not have to suffer in silence

REMEMBER Mel Gibson? Cute little guy. Wore bad hair extensions, facial graffiti and tartan in a movie called Braveheart. Has about 23 children. Made a film called The Passion of the Christ.

Then disappeared.

Inside one year, wee Mel went from Omnipresent to Absent. One day, all over media. Next day, missing in inaction. He could be in a nunnery for all we know of his current whereabouts or habits.

On the other hand, since The Passion is going to move into DVD any day now, even if he IS in a nunnery, they’ll let him out to do a quick blast of publicity. That’s the great thing about being A-list famous. All you have to do is deliver a few soundbites on how taking a year off centred you, or allowed you to learn from your children, or enabled you to quit smoking, and there you are on the front pages of the magazines and in the guest chairs of the chat shows again.

It’s quite difficult to permanently forget a film star, not least because of re-runs on late night television.

It’s amazingly easy, however, to permanently forget a horror that visited death and destruction on us every summer, sometimes taking the form of an epidemic. It was all the more frightening because nobody could tell whence it came or how bad it would be during any given summer.

It was known that it had been around for millennia - old carvings of crippled survivors proved that - but why had it become fiercer and more widespread in parallel with the arrival of the twentieth century, with its major developments in hygiene and nutrition? And why was it infecting more and more adults, instead of staying with children, when it had always been known as “infantile” paralysis?

It’s difficult for anybody born after the 1950s to grasp the dread this disease brought to every summer. A dread immeasurably deeper than fear of spoiled mayonnaise or enraged wasps.

A touch of fever in a child or a sore throat caused mothers to check for neck stiffness and other signs that the symptoms might be the manifestations of polio.

Polio epidemics led to hopeful segregation. You didn’t allow your children to go to the swimming pool because it might carry the infection.

In the US, parents brought their children home from summer camp to prevent them catching it from other children. Yet the infection rolled out, every summer, so that in 1916, just under 30,000 Americans caught it and 6,000 of them died of it. Many of those 6,000 suffocated, their breathing muscles rendered useless by the disease.

It took ten more years before a machine was invented to replace those withered muscles. One man designed a tin box big enough to fit a human being into, attached the working parts of two vacuum cleaners, sealed the ends with rubber and created a crude “iron lung.”

Within years, hospitals in Europe and America were filled with the big metal caskets, lined up at a parallel slant the way we park cars in crowded car parks, nothing but the head of the patient peeping out at one end.

They were noisy. They were ugly. But they allowed polio patients to breathe, and, in time, some of those patients could be “weaned” from the iron lung onto other support systems and allowed to go home.

As a case study in medical history, polio exemplifies all the factors that recur in the human handling of most killer diseases. It shows, first of all, the bitter competition that tends to emerge between rival methods of treating the sick after the worst period of the illness is over. Warm spring treatment contended for favoured status against the more active physiotherapy advocated by a woman named Elizabeth Kenny.

Later, the proponents of rival vaccines, Sabin and Salk, promoted their wares with a vigour and venom unequalled until the more recent rivalry between different schools of AIDS treatment developed in the US and France.

By far the most insidious factor, though, (common to a wide range of disabilities ranging from blindness to Down Syndrome) was the expectation that the patient would be a hero. Patients were encouraged, nay, REQUIRED, to deny their suffering and present the appearance of joyful resignation. Polio entered public narrative as a challenge anybody with spirit and determination could overcome. Polio sufferers got the message: the area around their iron lung or wheelchair was a no-whinge zone.

LEADING the charge - in a particularly dishonest way - was Franklin Roosevelt, himself crippled by polio. FDR spent years trying every device and therapy holding the promise of restoring the use of his legs, even those which were infinitely painful. None was productive. He never managed to walk more than a few halting steps using braces, sticks and the quiet assistance of Secret Service men.

Yet he maintained arguably the most enthusiastic deception of the American people (not to mention the rest of the world) ever mounted by a President. He was photographed standing up, leaning with apparent ease against a railing or a wall. Or sitting on an ordinary chair at an ordinary desk. Even when photographed with children who had suffered polio and who were seated in wheelchairs, the President sat in a wheel-less chair. As a result, only one picture has survived showing him in the wheelchair which was his primary means of mobility for more than thirty years. By any standards, that was political inauthenticity at an unprecedented level.

The message his behaviour sent was that polio’s effects could be overcome with resolution and personal courage. The message his physical realities would have, more truthfully, delivered was that all the personal courage in the world cannot regenerate non-existent muscle.

But this, I hear you say, is all history.

Not so. As FDR found out, polio packs a double whammy. It comes back. Not in infectious form. Just in crippling form. Decades after it first visits, it takes a last tour, weakening muscles the patient has fought hard to build up, so that independence hard-won thirty or forty years ago, is gradually eroded. Post-polio syndrome is being experienced by individuals right around this country this late summer. Experienced painfully and destructively. And silently.

There’s little collective anger and outspokenness - but then, when the lesson of your life is to be sweetfaced and brave, you’re not going to suddenly take to the streets in angry protest. That’s for younger people, suffering illnesses like AIDS, who know the louder they shout, the more money goes into research.

People now suffering the horrific second-onset symptoms of polio know there’s no hope research will come up with a cocktail of medicines (like those developed for AIDS) to delay and ameliorate post-polio Syndrome. There’s no long-term market for such medicines, thanks to vaccination. Ergo, no great academic reputations will be built developing them.

Because they’re so scattered, geographically, no politician will fight the cause of post-polio sufferers. No inquiry will hear patients tell the story of their trauma and ongoing suffering. Post-polio sufferers are like the Gallipoli veterans of in the song The Band Played Waltzing Matilda.

Forgotten heroes of a forgotten war.