Services falling short, say polio survivors

Australia’s ageing polio survivors are calling for better services to support their health and independence and prevent premature entry into residential aged care.

Currently services are lacking due to little understanding about the needs of polio survivors including those with physical disabilities and post-polio syndrome – which refers to a range of debilitating biomechanical and neurological symptoms that occur years after contracting the initial polio infection. On top of this, the historical experiences of polio survivors is further hindering access to services.

To help address these gaps, the Australian Association of Gerontology, Celebrate Ageing and Post Polio Victoria are hosting a workshop to design more inclusive services and communities in Adelaide next Tuesday ahead of the AAG National Conference.

The workshop is bringing together polio experts – including polio survivors – to present evidence of experiences and how these experiences have shaped what polio survivors need.

Among them is Shirley Glance, president of Post Polio Victoria, who said there was a lot of stigma around polio resulting in people not wanting to admit they had it.

“We were told we didn’t have a disability, even though we had trouble walking. We just had to put up and shut up. We weren’t allowed to be disabled,” Mrs Glance told Australian Ageing Agenda.

“Some of us now have post polio syndrome, which causes progressive muscle weakness, pain and fatigue. We need help and we need service providers to understand what we need. That’s why this workshop is so important.”

The workshop aims to lead to the development of an AAG policy paper with recommendations for providers and policymakers, said Dr Catherine Barrett, a researcher, changemaker and founder and director of Celebrate Ageing.

“The clinicians, researchers and other health practitioners in the room will work at tables with survivors and we’ll ask what we need to create inclusive services and communities for people with post polio syndrome,” Dr Barrett told AAA.

Among outcomes, Dr Barrett wants service providers to understand polio better so that polio survivors do not have to teach them and policymakers to better consider this group of people, who were silenced and told they didn’t have a disability.

She said she wanted to do something in this area after talking to polio survivors for the first time.

“When they started telling me about their stories, I just thought that’s terrible, there’s so many injustices,” Dr Barrett said. “A really significant part of the problem has been the way we treated them historically.”

That historical treatment includes people with polio and their families being told physical disability following infection was the result of being lazy, she said. “The idea was just push through it,” Dr Barrett said.

However, as will be presented at the workshop, this is resulting in older polio survivors continuing to try and push through without support and they are ending up in residential aged care, she said. “Whereas you’d be better off getting the services in and getting that support in early at home.”

‘Cruel’ treatment

Among those who were told disability is a sign of laziness is Post Polio Victoria secretary Robyn Abrahams (pictured top), who was three when she contracted polio.

“I was put into an infectious diseases hospital and my mother and father weren’t allowed to visit for months. That was so cruel. We were told being disabled was a sign of laziness. We weren’t allowed to complain, we just had to endure it all. I was in an iron lung for a while,” said Ms Abrahams, a critical-care nurse and midwife.

“When we turned 16 the little support we had ended, and we were just supposed to get on with life. It wasn’t until I had a stroke in 2017 that I learned how to pick myself up when I fall. We were never taught that. They didn’t want to know we existed. We have long polio and no one is listening to what we need,” Ms Abrahams told AAA.

‘Fighting all our lives’

Post Polio Victoria board member Dr Peter Freckleton – a barrister and expert in legal translation – contracted polio when he was six. He said Australia needed to recognise and support survivors’ disabilities.

“We have been fighting all our lives to get the support we need, and we are still fighting now. Some people with polio denied their disabilities and didn’t apply for NDIS. Now they are struggling to get the support they need through My Aged Care and will end up prematurely in residential aged care.”

Dr Freckleton also wants to encourage everyone in the community to have the polio vaccine. “Polio is now rebounding due to under vaccination. If people think having the vaccine is worse than getting polio, they need to take a walk in our shoes. Ageing with polio is difficult. Prevention is better than cure, and in this case there isn’t even a cure, so get vaccinated.”

The three-hour workshop – Recognition At Last: Inclusive Communities And Services For People Ageing With Post Polio Syndrome – is taking place on Tuesday 22 November from 9.30am in Adelaide.

Australian Ageing Agenda is a media partner of the AAG

Main image: Robyn Abrahams

Comment on the story below. Follow Australian Ageing Agenda on LinkedIn, X (Twitter) and Facebook, sign up to our twice-weekly newsletter and subscribe to our premium content or AAA magazine for the complete aged care picture.