Living with chronic pain can be an alienating experience.
You feel lonely and uncomfortable, and perhaps unable to share that experience with others for fear of judgement. You might desperately want to ask for accommodations to make getting through the work day easier, but feel like a burden if you do.
But the reality is, chronic pain is more common than we think. According to the Australian Institute of Health and Welfare, one in five Australians aged over 45 experience persistent pain for most of the week – pain that can limit their daily activities.
At a recent webinar in Melbourne, disability academic and activist Professor Tom Shakespeare made the case that society needs to talk about pain, and how those experience chronic pain make it through life day by day.
“Either the pain defeats you, or not. And I’m interested in the not,” he told listeners.
The webinar was called ‘Pain: a neglected disability rights issue?’, and saw speakers – including incoming CEO of Disability Advocacy Network Australia (DANA), El Gibbs, and Project Support Officer at Children and Young People with Disability Australia, Dylan McBurney – share their own personal experiences.
And although chronic pain is a negative experience, speakers shared how the right supports make a positive difference.
Reasonable and necessary
Shakespeare noted that accommodations that help people to live and work to the best of their ability are a right – but we often don’t know what a reasonable accommodation looks like for people living with chronic pain.
It could be something like a new mattress, or working from home (or bed). It could be starting later in the day to accommodate medication routines.
Whatever those accommodations are, they should be noted and allowed, he said. Advances in technology should make that possible, because people can now access the world in different ways.
Researchers should also spend time talking with those who live with persistent pain to find out about their hacks and routines, and how they manage or accommodate to go to work and live as this can help other people understand chronic pain better.
He said it was important to bring people in pain up to the level of those who do not experience daily pain – and ensure that they receive representation.
Pain is restricting, but joy is possible
Gibbs and McBurney explained that pain can restrict their lives, but they have found ways to deal with it.
But with ongoing conversations about disability in Australia, Gibbs said it is time to talk about those who are “doing it tough” due to pain, and how they are often excluded from supports like the NDIS or shunned by the health system. McBurney said while his pain puts him behind, he is proud of the work he does and through his disability pride is able to find connections and joy in life.
The two speakers acknowledged that times are changing when it comes to disability discourse. Gibbs said she found it hard to talk about her chronic pain when she was younger, for fear she would be ignored. Conversely, McBurney said he felt that we have now moved into a “new era” of disability advocacy where conversations about pain have moved into open discourse.
“Disability pride is a big thing. Disability pride is something you can have and hold on to,” he said.