Philomena’s story

 

“It’s about Independence. It’s about dignity, it’s about looking after me, showing the world that I can live independently and be the person I want to be and not looked at as a person with a disability but looked at as Philomena.”

At fifty nine years of age, Philomena Macdonald lives a busy and active life, exercising regularly, and attending singing lessons and acting as the coordinator for her local With One Voice (WOV) One Voice Ashburton choir. “I go to Gym on a Monday, and Physio on a Wednesday and Friday to try and maintain the mobility that I currently have,” she explains, while also sharing that “I would love to be asked to sing at a wedding some day!”

Philomena has cerebral palsy and chronic back pain explains that, “the pain I have is a 24/7 thing so some days I don’t do much and others are full.”

Since the age of five, Philomena has had around 54 operations, mainly on her legs, and while some have helped, others have not, meaning that some years ago she made the decision that there would be no more surgery unless it was essential. For the past three or so years Philomena has participated in the Independence Australia psychology, counselling and support groups, accessing these services on a casual basis as she needs to in order to give her the support that she requires at the time. She describes the services as having helped her to ‘find’ herself and helped her to navigate just what it is that she wants from life; “We talk about whatever is going on, it can be anything from ‘I’m sick’ to marriage issues, to family issues, to death, to any issue…It’s chatting to someone who respects your opinion and respects what you say without judgement.”

Earlier this year, as social distancing measures came into place to help slow the spread of COVID-19, many services which provide support for people within the community, especially for those living with a disability needed to adapt very quickly to the ‘new normal’. Health services could not simply shut down and take a break as many people rely on them, however many services could no longer justify having people attend physically. Similarly, for those with compromised immunity, heading out into the community became a cause for concern, further feeding often pre-existing anxieties.

Being able to continue accessing health care services has been vital for so many vulnerable people. Despite so many aspects of their daily lives coming to an abrupt halt, they have been able to rely on receiving much needed support at this especially challenging time.

Here at Independence Australia we quickly transitioned to new technologies and many of our psychology, counselling and support groups headed online.

When asked about the importance of maintaining these services through this period, Philomena explains, “I think it’s really vital, I think that COVID is going to cause a lot of people with disabilities, and other people, to have mental health issues from not being connected with their regular providers, be that counsellors, doctors or whoever they are. Where possible I have been attending appointments in person but when it isn’t an option, I’ve been using zoom. It’s really important, I am really worried about, not necessarily my mental health but if I didn’t have contact with carers in the morning and the night then I would be worried as I would be too isolated.”

In Philomena’s life, it is not just Independence Australia’s services that have helped to keep her connected. The One Voice choir of which she is heavily involved, was also able to move online; “People with lots of disabilities participate in the choir” she explains, “there’s around 80 regulars, choir happens on a Wednesday and there are usually around 50 online at the time the choir goes live, though often many others view the video after.” She further explained that the most recent clip had received more than 750 views, opening up the choir to more people than ever before.