Sydney author Desney King can’t wipe the smile off her face.
She’s making a wish on a dandelion with 2-year-old granddaughter Zara, who laughs, climbs up on Desney’s wheelchair and cuddles up close to help blow the dandelion with her ‘Nan Nan’ before skipping off for a swing.
‘Zara is so affectionate, so loving, and we have so much fun together, it’s very special for me to have this time together, and special for her too,’ Desney says.
It’s a perfect day with her family at Collaroy Beach playground for Desney, who has survived multiple strokes and can no longer stand or mobilise alone.
And it’s a long way from the dark years Desney spent stuck at home before she joined the NDIS about 8 years ago.
‘I call those my horrible years,’ Desney says. ‘I was so isolated and lonely, for about 2 and a half years, I was living on my bed, getting weaker and weaker.’
That was before Desney had NDIS supports including exercise physiology and a team of support workers like Marc who has taken her to the beach park today to enjoy the outdoors and spend time with her family.
‘The NDIS saved my life. I know it sounds dramatic, but I think without the NDIS, I wouldn’t be here,’ Desney says.
’It gave me access to supports to build up my strength again and get me out in my community, spending time in nature, and with my family. It gave me back my life.’
Recently, NDIS support has also given Desney the chance to form a strong bond with her grandchild -- something she feared she might not have.
When Desney’s daughter was pregnant, she couldn’t have been more delighted, but she was also afraid.
‘I was in some ways really grieving when Annie was pregnant, because I felt I wouldn’t be able to be an engaged grandmother,’ Desney said.
‘I was afraid I might not even be able to hold the baby, and that we wouldn’t see each other often or be able to do things together, that we wouldn’t be close the way I wanted us to be.’
Desney’s fears were unfounded. Zara is now 2, and she and Desney are the best of friends.
‘We have such a rich and wonderful relationship, it brings so much joy to my life,’ Desney says. ‘It’s so appropriate that her middle name is Joy.’
Desney says their close relationship is only possible because of supports she has through her plan.
‘For the past 2 years, I’ve had wonderful support workers who take me out to visit Zara every fortnight,’ Desney explains.
‘My little unit is not toddler-friendly, so being able to go and visit Zara at her home or out at the park or beach, it’s vital for me. It has made such a difference to my wellbeing and my life. I read to Zara and we play together. She loves to climb up on my wheelchair and play peekaboo. We have so much fun.
‘But without the NDIS I wouldn’t have that. I would be stuck at home isolated as I used to be instead of spending time with the people I love.’
Enjoying a special bond with Zara, Desney reflects on the importance of family and the special women in her life.
‘Watching my daughter now mothering my granddaughter, I see a whole lot of attitudes and values and loving care that have come down the line from my mother,’ Desney says.
‘I can see the impact that my wonderful mother, and her wonderful mothering has had - and is having now - on my baby granddaughter Zara.
‘My mum was way ahead of her time. She didn't say she was a feminist, but she was very strongly feminist, and she always told me I could do anything I wanted to do, and she made sure I got a very good education.’
Desney, who published her first novel in 2020, writing from her bed, is now working on a memoir about living with a disability.
‘I think as an older woman with disability, my message for all Australians is simple - treat us with respect and treat us as equals,’ Desney says.