Polio Particles - Issue 10

Mary Westbrook

Doctors not the only Australian opponents of Sister Kenny

Sister Kenny's departure from Australia is usually attributed solely to her conflict with doctors. However research by Phillipa Martyr, for her PhD degree at the University of Western Australia, reveals that the role of the Australasian Massage Association's (precursor of the Australian Physiotherapy Association) antagonism against Kenny has been overlooked. Kenny threatened therapists' livelihood, particularly the growth in the number and status of their workforce provided by the polio epidemics. Martyr cites numerous examples of how the Massage Association went out of its way to discredit Kenny and to align themselves securely with the orthodox medical profession, keeping up a steady pressure on their respective medical connections which contributed to the eventual rejection of Kenny and her methods in Australia. In Queensland, the Association attempted to prosecute Kenny because she practised what she calls re-education … As re-education is an essential part of physiotherapy and as Sister Kenny is untrained and unauthorised by the Board she should not be allowed to either practice or teach. When therapists found that legally nothing could be done, they commenced investigation of Kenny's nursing background and a steady flow of communication with other branches warning them about Kenny's activities. One letter lamented, It's hard indeed when our medical men support such rubbish as the Kenny method. Worried at their inability to compete with Kenny's public profile the Association appointed two officers to publicise cases of recovery from polio after treatment by physiotherapists. Kenny visited England in 1937 and on her return to Australia said that many hospitals had offered her facilities. The Association had warned its British counterpart of Kenny's lack of credentials and used this connection to expose Kenny's claims of the British offers as false. Martyr argues that in its attack on Kenny the Association gained state and public attention … and thanks to its policy of association and alliance with the medical profession it had gained the advantage. Martyr notes that ironically much of Kenny's method was integrated into physiotherapy. Kenny herself had not been legitimised but her methods of treatment had. Interestingly the website of the Kenny Memorial fund (which in conjunction with the School of Nursing at the University of Southern Queensland is hoping to raise $1.5 million to establish a Sister Elizabeth Kenny Professorship in Rural and Remote Nursing) describes her method as hydrotherapy in warm salt baths, extended manipulation of affected arms and legs, together with daily massages … much like contemporary physiotherapy.

PPS ends Arthur Clarke's travels

Reuters (6/11/01) reported that Wheelchair-bound science fiction writer Arthur C Clarke says he plans to spend the rest of his days in his adopted home Sri Lanka because he no longer has the energy for overseas travel. Clarke, 83, widely acclaimed as a prophet of the space age, said the crippling post-polio syndrome has forced him to decline an invitation for a gala dinner in his honour at the Playboy mansion in Los Angeles. "I can no longer face overseas travel", said Clarke in a videotaped message to the gala … "I am completely wheelchaired owing to post-polio syndrome and am very limited in time and energy". The report described Clarke as one of the most celebrated science fiction writers of all time. He has seen many of his predictions come true, including a then-controversial 1945 theory of a world linked by geostationary satellites.

Iron lung baby discovers her past

A story in The West Australian (28/12/01) about 53 year old Jan Findlay, Australia's first iron lung baby, reflects how attitudes regarding the capabilities of parents with disabilities and the wisdom of doctors have changed in the last half century. The story tells how Jan was reunited with her birth father, Jack Clark, last Christmas. Jan's mother Betty Clark contracted polio in 1948. She was briefly removed from her iron lung to give birth to Jan. Betty returned home after four months and on doctors' advice put Jan up for adoption. Jack said I didn't want a bar of it at the time because I didn't want to lose my daughter. The doctors said Betty would never be properly able to look after the baby so we didn't really have a choice at the time. After the adoption Betty returned to hospital for a further year of rehabilitation and Jack looked after their son. Jan, who learnt that she was adopted 14 years ago, only recently managed to trace her father. Betty died in 1985. Jan said she felt no resentment about being adopted … "That was just the way they did it in those days", she said.

The last iron lungs

On 17 February Associated Press USA ran a story, Woman Spends 51 Years in Iron Lung. It tells of Diane Odell of Tennessee who contracted bulbo-spinal polio aged 3 and still uses a 7-foot long, 750-pound iron lung. Iron lungs were first used in 1928 but by the late 1950s were largely replaced by positive-pressure airway ventilators. Production of iron lungs ceased in the USA about a decade ago. The manager of a Pittsburgh company that manufactures home ventilators is quoted as saying that only about 75 to 100 are still in use today ... In some cases they are not used all the time. About 200 iron lungs exist that can be recirculated among people who need them. Diane can speak when breathing out. She uses 'sip and blow' switches that allow her to operate a television. Using a voice-activated computer she wrote a children's book, Less Light, which is the story of a tiny star named Blinky who dreams of becoming a wishing star. Diane is currently writing her autobiography because she wants to show children, especially those with physical disabilities, that they should never give up. 'Its amazing what you can accomplish if you see someone do the same thing' she said. Diane obtained her high school diploma working from home and has an honorary college degree. Her parents and married sisters care for her. Recently a fund-raising gala event attended by 1,100 people including Al Gore, the former Vice-President, raised $US110,000 to establish a foundation that will care for Diane when her parents are unable to do so. She attended the event in her iron lung that was draped with an American flag. She wore a sequined dress and tiara. Diane said she feels blessed with good friends and a good family, and she is thankful. 'I've had a good life'.

A similar decline in the use of iron lungs in the UK is described in The History of the British Iron Lung (www.geocities.com/ironlungmuseum/ironlung.htm). In 1968 St Thomas' Hospital in London began selling off its iron lungs. The Melbourne museum has an iron lung from the old Fairfield Infectious Diseases Hospital. It is decorated in red and black as its former inhabitant was an Essendon supporter and can be seen on the Web at www.museum.vic.gov.au/hottopics/article.asp?ID=324.

In Sydney, Network member Gabby Hannemann has been sleeping in the same iron lung since 1967, when it came home with her from Prince Henry Hospital. She was 10 years old at the time. Because of the age of the lung, maintenance is becoming something of a problem. As far as Gabby knows she is the only person in NSW still using an iron lung, and she feels this probably adds to the maintenance problems as no-one is learning about them now - the iron lung is considered obsolete. Gabby would be interested in hearing from any other polio survivors still using an iron lung, particularly with a view to sharing information on how they are coping with problems arising from the age of their units.

Polio survivors used in overuse injury research for military

An article on polio published in The Dallas Morning News (12/1/02) wrote about the late effects of polio: Doctors attribute the symptoms to overused muscles, a cruel twist of fate because survivors were encouraged to work the muscles hard during rehabilitation. 'The medical community pushed them a lot', said Dr Mary Ann Keenan, a polio specialist at Philadelphia's Albert Einstein Medical Center. 'They had much weaker muscles than we perceived. We also underestimated how hard the everyday activities of life are, especially when they don't have that muscle strength.' Dr Keenan argues that more research could not only pay off for polio survivors, but also have long-term benefits in the study of neurological and rehabilitative disorders. She recently received a $1 million grant from the Army to investigate overuse injuries. Keenan uses post-polio patients in this research. Because they are susceptible to an accelerated pattern of overuse symptoms the post-polio population provides an excellent model for the study of overuse disorders in the general population Keenan said in an article she and her colleagues published in the Archives of Physical Medicine and Rehabilitation (volume 81, June 2000). She explains that overuse injuries occur directly when weakened muscles must work harder to maintain a certain force or indirectly when alternate muscles are recruited to compensate for weakness. Sometimes people are not aware that they are overusing muscles to compensate for undetected subclinical weakness. She has found that among polio survivors, those with leg weakness are more prone to shoulder overuse injuries, as are younger and middle-aged survivors probably because they lead more active lives than older retired survivors do.

Left behind by the discovery of polio vaccine

Articles on the history of polio sometimes show photographs of patients in polio wards celebrating the discovery of the Salk vaccine. Yet the reality was that this discovery resulted in the termination of most research into the treatment of polio and the loss of doctors' interest in polio patients. As Wilfred Sheed, a British born American journalist who contracted polio aged 15, wrote in his autobiography: They never did learn very much about polio except how to prevent it. Sheed confesses that he was surprised at the force of my irritation the day I first read about Dr Jonas Salk and his famous vaccine. I could have sworn I knew better than that by this time - knew for instance, that I wasn't going to get my legs back now, whatever anyone discovered the switchboard of my spine had been dismantled years ago - and knew from observation that a lot of two-legged people are absolutely miserable … Yet here I was flinging the overseas edition of Time magazine against the wall of my Oxford sitting room so hard that the staples fell out. What had taken the man so long? … I was back where I began, pounding the sky with my fists and hoping for a cure. Well this really was the end, baby. There'd be no more research now for sure, and no more gleams under the door, or hopes so small and crazy that I hid them even from myself. It was a small loss and a huge one at the same time, but I guess what gripped me most wasn't my own totally hypothetical loss as the spectacle of all those people smiling and cheering as the last boat pulled out … I guess the message for the poor wretches on the dock was … they didn't even seem to be looking in our direction any more. We were last year's cover story now.

I must admit to having a similar reaction at some post-polio conferences that have had as their keynote address a talk on the success of the polio eradication program. Of course I'm delighted that people, particularly my children, will no longer be vulnerable to polio but such addresses, which are invariably the best news delivered at the conference, have nothing to offer polio survivors for whom such conferences are held.

(In Love with Daylight, Wilfred Sheed's autobiography, was published by Akadine Press in 1999. Much of it concerns his later fight with cancer.)

Polio facades

The effort polio survivors put into denying or minimising their disabilities and the way PPS can demolish such facades is vividly described in Sheed's biography. He writes, I had taken the art of concealment to such dizzy heights that I was genuinely surprised now by offers of help: where had I gone wrong this time? If I stumbled, I had learned to stare balefully at a nonexistent pothole until the others could almost see it too, and if I outright fell, I was up so fast it seemed like an optical illusion. Or so I hoped. The truth is I was probably always a lot more handicapped than I let on, either to myself or others. My knacks were all geared to the same end, a massive cover-up, a downright Watergate of the nerves and muscles, in order to pass inspection. As Bernard Shaw said of duchesses, if people treat you like one, you are one; and I worked on my walking as assiduously as Eliza Doolittle worked on her talking: not just to do it better, which is hard, but to fool people, which is surprisingly easy. And I would receive my reward for all this spit and polish, when someone I knew slightly would exclaim on, let's say, our third meeting, 'What's the matter - did you hurt your leg?' It was like smuggling the Hope diamond past smiling Customs officials. But I was like a regiment trained to parade better than fight, and when the so-called post-polio syndrome hit me in my mid-fifties, it weakened the whole physical apparatus just enough to call my bluff on all fronts at once - and no one could have been more surprised than I to realize quite how much I had been faking it all these years.