Down Syndrome Australia and Down Syndrome Queensland are saddened by the death of Dr John Herron.
Dr Herron helped establish Down Syndrome Queensland in 1976 and he was instrumental in changing the language used to describe Down syndrome.
Dr Herron was also a senator for Queensland from 1990-2002 and later became Australia’s ambassador to Ireland and the Holy See.
“I remember meeting Dr Herron in 1998/99 after he had written a piece in the Downs Digest,” recalls Down Syndrome Australia director Dr Rhonda Faragher and Director of the Down Syndrome Research Program at The University of Queensland.
“He told me that he’d been one of the doctors who had argued to change the name from Mongolism to Down syndrome.
“His first born daughter, Maryann, had Down Syndrome and when he was working in London he got tired of people saying ‘what a lovely little Mongol’ to which he’d reply, ‘but she’s Australian!!!’ I think a few doctors wrote a letter to the Lancet about the time when the Mongolian government was agitating for a name change as well.”
After MaryAnn died in August 1997, Dr Herron told Federal Parliament that politicians and the community needed to come to a better understanding of intellectual disability. To that end, he read into Hansard a letter that he and his wife Jan had received from one of MaryAnn’s sisters:
“Last Tuesday my eldest daughter, Maryann, died suddenly at the age of 37,” Dr Herron said.
“Born with Down Syndrome, we suspect autistic, she never spoke. I speak of this tonight because I believe there is a need for the government and the community to understand the feelings of the families of the intellectually handicapped.
“One of Maryann's sisters was overseas at the time of her death. She wrote a letter which summarises the feelings of her nine brothers and sisters:
‘Dear Mum and Dad,
‘Peter and I wanted to send you a note to let you know that we are thinking of you at the moment.
‘We could never imagine how difficult this is for you, but I guess that over here we have been able to cope so much better ourselves remembering how special Maryann really is, and how much she has helped all of us be such better people as a result of her just being. We feel so much for just being able to know her. On top of everything that both of you taught us, Maryann taught all of us patience, acceptance, and a fair amount of humility as well.
‘We feel so glad you had the opportunity to do Australian Story last year. We also feel an enormous gratitude to you both for speaking so freely about Maryann and exposing yourselves, and her, to everyone else who saw the programme. We were proud to have her as a sister, and proud that you were able to talk about everything so truthfully. People like Maryann so often spend their lives behind closed doors and without acceptance, and you diminished a lot of the stigma for people with the same disabilities, just by exposing our family as it is—we were privileged to have her as part of our family.
‘We can never fathom the depth of your grief, but we hope that you will have the time to grieve that you need.
‘We hope she has a beautiful good-bye service, and we send our love with her.’”
On behalf of many individuals and families across Australia, and the current and former boards of Down Syndrome Queensland, we acknowledge and thank Dr John Herron and his wife Jan Herron for speaking out and for speaking truthfully.
We especially thank John and Jan Herron for finding ways to so effectively put their words into action to achieve positive change for people with Down syndrome.
We send heartfelt condolences to Jan and to all the Herron family. May John rest in peace.
– Dr Ellen Skladzien, CEO, Down Syndrome Australia
– Mr Darryl Steff, CEO, Down Syndrome Queensland
– Dr Rhonda Faragher, University of Queensland.
