Our whole world and the way we perceive our lives; all we are, all we do, and all we feel is dictated by our brain. So, what would life be like then, living with a brain injury? More than 700,000 Australians have an acquired brain injury, with experiences so diverse, that each are likely to answer that question differently.
For Angela Kalantzis, damage to her frontal and temporal lobe has caused ongoing aphasia, fatigue and problems with language and cognition. She says it is a hidden disability and one which is a lonely space to exist in.
“When I first had my accident, I was literally alone. I was discharged from hospital very, very quickly with no supports in place. It was literally – ‘go home, if pain persists, call your doctor’ kind of thing,” said Angela.
“I did get to a very dark place. There was a suicide attempt, and there was a stay in the mental health ward.”
“After that, with support from my counsellors and neuropsychologist, that’s when people started taking me seriously. I remember one of the psychologists in the hospital sat me down and said ‘Angela. You have a brain injury. That is why you are feeling the way that you are. That is why you are depressed.’
Brain injuries can occur from any number of things – car accidents, sporting injuries, assaults, falls, strokes or haemorrhages. Often once the physical injuries that can be seen have healed, supports tend to slip away. It is a disability which is commonly overlooked, and, like Angela, many people can fall through health system gaps.
Addressing this has become Angela’s life purpose, and so The Brain Injury Community was born.
“Starting The Brain Injury Community was about listening to other people that I have met along the way with brain injury, and hearing the things they are asking for and crying out for. So, I went into rescue mode, and I thought ‘how can I help?’”
The Brain Injury Community acts a resource for people with brain injury, and a first point of call for people leaving the hospital system, linking people to supports and therapies. But its primary goal is much simpler. It is to make friends.
“It’s all about giving people the ability to meet others, and to make a friend. Someone who they can call or text, and someone who is not mum and dad, or partner or carer. It is someone different. Someone who understands,” said Angela.
“It sounds so simple, so basic. But this little thing is just so important. Because it helps to connect people back into their community, it helps them to feel part of the world again.
Image: Angela Kalantzis
“Coming together with others is a tonic for the awful loneliness and the social isolation so many people with brain injuries feel. It can turn a hidden disability into something which is seen, understood and accepted, and that is incredibly healing,” said Angela.
As well as being a referral point for services, The Brain Injury Community runs outings and events. Their signature event is their picnic, just like the ones we all used to have with mum and dad. Food, drink, games and friends in a lovely community space. They happen from the Sunshine Coast to Brisbane out to Toowoomba, down to the Gold Coast and now, thanks to help from NDIS partner in the Community Social Futures, picnics are also held in NSW.
Images: Supplied by The Brain Injury Community from different events
Social Futures delivers a program called Changemakers as part of its commitment to creating more inclusive communities, and they have partnered with The Brain Injury Community to help them to establish connections and deliver events in Northern NSW.
Social Futures Community Development Coordinator, Gemma Ferris, says anyone who dreams of making their community more inclusive can be part of Changemakers.
“The Changemakers are the innovators, the dreamers, the do-ers. Like Angela!” said Gemma.
Through the program people can receive free mentoring and skills development in event management, promotions, and community engagement skills.
Image: Social Futures Community Development Coordinator, Gemma Ferris with Angela Kalantzis
Other activities run by The Brain Injury Community range from fishing trips, to visiting art galleries, animal therapy to cooking classes.
“I have a member who loves hard core heavy metal. So off I went to the Foo Fighters with him!” laughs Angela. “It’s something simple to do with someone that makes the world of difference to them.”
Angela and TBIC are supported by The National Disability Insurance Scheme (NDIS), without which, Angela says none of this would be possible.
“I would still be lying in a dark bedroom, rocking back and forth if it weren’t for the NDIS. Life before NDIS … it’s like black and white, night and day. I would literally forget what day it was.”
“Now, I have the most amazing support coordinator. One day she said to me, you need speech therapy. So off I went to speech therapy. And it made me realise the help that I needed. For years I was told, ‘yeah you’re fine’. But I wouldn’t be able to do this work, without that support.
“I used to be an avid reader, but after the injury, I really struggled. It’s not so much the process of reading the word and understanding, it’s remembering. I can be halfway through Chapter 1 and not remember what happened at the beginning of Chapter 1. So, reading, writing and comprehension – my speech therapist really helped me with that.
“The Brian Injury Community grew rapidly last year, and a lot of that responsibility falls on my shoulders to be the face of the charity at all the picnics and events. I really struggled towards the end of last year and very nearly fell apart. So, this year I’ve gone back to my OT (Occupational Therapist), and back to counselling and back to the neuropsychologist, and without the NDIS, I wouldn’t be able to do that.”
So what does it take to be a woman living with disability and running a charity?
“As someone with a disability, trying to run a charity, trying to succeed in the business sector, the biggest challenge is people taking you seriously, because as soon as you say I have a brain injury, you can see them go, ‘yeah nup’. They’ll give you a few minutes of their time then walk away.”
“When it comes to women with a disability. There’s fire in that belly! Because not only do we have to prove ourselves because we are women, we have to prove ourselves because we have a disability,” Angela said.
Hard work is reaping rewards for Angela and her team. In 2023 The Brain Injury Community was a Finalist in the Australian Small Business Champion Awards.
“That was way awesome! And it was also very humbling. We have a wonderful group of women working with us, including my support workers and volunteers – so for the business community to recognise the work we are doing and see what can achieve, that was a fantastic moment” Angela said.
The Brain Injury Community runs picnics and organises events from the Sunshine Coast to Brisbane, west to Toowoomba, down to the Gold Coast and now into Northern New South Wales. They also run online support groups. You can view upcoming events on their website https://thebraininjurycommunity.org.au/ or contact [email protected] for more information.
Social Futures is a Local Partner in the Community to the NDIS. If you need assistance accessing the NDIS, or if you would like more information about any of our Community Inclusion Programs, including Changemakers, call 1800 522 679 or email: [email protected]
