Conversation with Junee Waites OAM
In June 2014, Junee Waites from Bega Valley NSW was honoured in the Queen’s Birthday 2014 Honours List, for her tireless work in advocating awareness about disability issues, particularly her significant contribution in the area of autism. Autism Spectrum Disorder can become a barrier to many people with this condition in achieving their full potential and having a rewarding life.
I invited Junee to have a conversation about her personal journey in raising a child with autism and her work in the disability world over 40 years. I thought this conversation could help in increasing my understanding of the challenges faced by Junee as a mother, a carer, a wife, an advocate, an author, a volunteer worker and a global citizen in Sydney, Melbourne and regional NSW. Also, importantly, I wanted to learn from Junee’s experiences gained throughout the evolution of disability services during 1970 to 2014.
Junee began by telling me empathetically that “Choice Matters” and “Living Life My Way” are not slogans as some people might view them. Choice and control have been the key drivers for Junee in raising her son, Dane, with the unquestioning support from her late husband, Rod. Junee spoke with pride and delight that her son Dane is now living life his way. “The choice he made is not for my convenience. He has finally moved into his own accommodation to live independently and be part of the community. But he decided to live on his own for four days a week in shared accommodation with his friends and comes home to live with Mum for long weekends from Friday to Sunday. This is his decision, and his choice, which of course delights me, not to mention that it really gives me a fulfilling and continuing role. I am able to share the good things and sometimes the not so good things with him. He loves Mum’s cooking, even though he gets excellent food in his accommodation. Nothing quite like home made chicken soup,” Junee said with a chuckle.
“Life never ends, it just changes.” Junee reflected. “Three and a half years ago, when my beautiful husband Rod died, a huge emotional and physical gap was felt by both Dane and I.” Junee lost a remarkably selfless supportive husband and partner in life. The family is a small unit with no extended family. The grief over his departure was particularly deep and continuing for Dane. Earlier in his life, Dane did not have a relationship with his father until his teenage years. He was just a screaming boy with little communication until he became a teenager. At that time, with the onset of puberty, he was dealing with the usual challenges of growing up with autism. He unfortunately was troubled with suicidal thoughts. Rod, his father, then became close to Dane, and had fulfilled a valued role, a life saving role. Until then, the family had discussions together as a family of three. After Rod’s death, Junee and Dane were both grieving the loss of Rod like a deep dark hole in their life everyday. One day, Junee listened to her friend’s words of wisdom and decided that “I need to let go of the grief, to have peace in my heart and give peace to Rod’s spirit. Now I light a candle for peace, not for grief every day."
Junee received notice about her Order of Australia Medal at the Queen’s Birthday weekend. It was Dane’s 40th birthday when the honours list was published in the media. Dane was so thrilled and happy that his Mum was awarded this Medal, and he thought it was the best birthday present to mark his 40th birthday. Junee did not expect to be given this honour, but was pleased that the Medal is a tangible recognition of the selfless contribution of Rod, and her own efforts that they did not waver in their belief that Dane’s abilities could be nurtured or in their commitment to offer him every life therapy experience possible.1
In the early years of the 1970s, 80s and 90s, respite care was a rare and infrequent relief to families caring for children with a disability. Junee recalled raising a child with autism was unspeakably difficult in the city, in which they could not see a life for their son growing into adulthood. When Dane turned 18, Rod and Junee decided to move to the country to live in Bega Valley. Rod decided to retire prematurely at the prime of his successful business career in order to continue supporting his wife and Dane. Junee and Rod became actively involved in their local community working as volunteers in Workability, supporting families who have children and adults with disability.
In 1992, Junee became the Chair of The Disability Trust, Workability Board in Bega for fourteen years until 2006. In 2002, June published a book titled, Smiling at Shadows about the journey of two parents’ experience raising a child with autism. This book described the difficult path to adulthood, how the two parents Junee and Rod learned to step into their son’s world and draw him out into their own2 and how they began to see the world through their son’s eyes. In 2013, Junee was awarded an Ambassador for Living Life My Way by the NSW Government to raise public awareness in the community about disability reforms, which aim to place people with disability at the centre of decision making.
I asked Junee what future she sees for people with disability, and what thoughts she would like to share with our readers. She reflected and said, “Person Centred Approaches (PCA) is a practice that is based on the attitude and belief in supporting people with disabilities to live a life they wish, and that they are listened to, heard, respected and encouraged to exercise choice and control to the greatest extent possible. Life’s journey always continues. Many individuals don’t have strong independent advocacy outside their support services. It is important that individuals have an independent voice like what SEAS provides.” Junee was partly instrumental in setting up this service in Bega Valley, as part of her role on the Workability Board and the Disability Forum. She continues by stating, “My son Dane has a good life due to the fact that he has a strong advocate, until then he will have choice and then a good life.”
Looking into the future, she said, “I am a great believer in the intent of the change...NDIS is a significant change with the intent to create goodness. If we all focus on the intent, then goodness would come out of that change process.” I couldn’t stop myself at the opportunity to put these questions to Junee:
Q: Did we sufficiently plan for this significant change for a better life for people with disability?
A: Put aside that the NDIS has been rolled out in a high spirited way, there is never a right time, never will be sufficient resources. It is wise that we are piloting the NDIS in various trial sites. There will be a huge amount of learning involved, a huge task for everyone involved… we just need to focus attention on the intent and goodness will come out of the process.
Q: What do you see the future for yourself?
A: I stepped down as the Chair of Workability Board, but I am staying on as their Patron. I have taken up another role with Rotary International as their Foundation Chair. I think it is time that I share some of my energy with the wider community. I believe in acting locally and advocating globally for all the things in humanity as Rotary International aims to do in eradicating polio, promoting peace, water, health, education and maternal childcare.
Q. How challenging will life become for Dane from here on?
A: When you look at Dane, he has a magnificent smile. He is a man that life is worth living for. It comes from within him.
Junee’s answers were measured, compassionate and confident for disability reform and for her son Dane. On behalf of the Disability Council, we congratulate you for your championing vision and your tenacity in your belief that choice and control do matter in one’s life. We wish you the very best and every success in continuing your work advancing humanity for all.
By Unis Goh
1 Junee Waites OAM, Smiling at Shadows, 2002
2 Junee Waites OAM, Smiling at Shadows, 2002