The furore surrounding my model child: a mother responds
This month, The Australian Women's Weekly published an article about Julius Panetta a three-year old from Perth with Down syndrome who has become a model with a leading Australian children's fashion label.
The article, written by his mother, Catia Malaquias, was warmly received by most readers. However, some people took issue with the magazine cover line which described the story as "How A Down Syndrome Child Became A Model".
Here, Catia responds to the feedback both positive and negative she has received since her story hit the stands.
I am not a journalist or a writer and the thought of sharing a very personal story with so many people was always going to be a little daunting. And yet, when The Australian Women's Weekly offered me the opportunity to do so in my own words I grabbed it with both hands.
If you read the article that I wrote for the current February issue of The Weekly about my son, Julius, and his foray into modelling with a children's fashion brand, eeni meeni miini moh, you probably know why I wanted to do it in part to invite those of you who don't know Julius, to perceive him through my eyes and see him like I do.
Eeni meeni miini moh gave Julius a precious opportunity to shine as the beautiful child that he is (at least to me), notwithstanding that he presents in some ways "differently" to other children he has Down syndrome.
And while I realise that in an ideal world this wouldn't be news at all, because in reflecting the true diversity of our society all kinds of people would be represented in the media and advertising, we are not there yet.
The representation of a child like Julius in a mainstream advertising campaign, alongside other children and on a par with them, radiating the same joy and innocent beauty that only children are capable of doing, was, in my view, significant and I wanted the broader community to take notice and talk about it.
So when eeni meeni miini moh confirmed that they would be using Julius' photos in their campaign, I wrote to The Australian Women's Weekly to see if they were interested in featuring a story about it.
I explained to them why I felt this story was worth telling and the messages that I hoped the story would send. I hoped they agreed I had noticed they previously did some stories on similar subjects; a piece about a baby girl with Down syndrome appearing in a US advertising campaign, the "Beautiful faces of Down syndrome" online feature and most recently an article in the December issue about older parents and their children with Down syndrome.
To my delight, one of the magazine's editors promptly called me to ask if I was interested in telling the story in my own words and suggested an article of 800 or so words, based on the amount of space that could be allocated to it in the next issue.
I was more than happy to tell the story myself because it is so personal but quickly realized that I couldn't say what I wanted in 800 words so instead I submitted an article of about 1800 words.
The editor allocated to Julius' story responded not, as I had expected, by telling me which aspects of the story to cut but rather, as I hoped, by assuring me that they would fight to keep every word of my story intact.
That the editor did, in close consultation with me, and for that I will always be very grateful. That editor, also a parent, felt strongly about the importance of Julius' story and its messages and supported me in my endeavour to tell it right and do it justice.
I have found myself teary on many occasions since Julius's story was published. I have been overwhelmed by the loving response from readers, including some whom have contacted me through eeni meeni miini moh, people who don't personally know Julius or our family but who felt touched by our journey.
Many people told me they cried reading my article and although I do not feel that ours is a sad story quite the opposite, I see it as a story of family love, acceptance and celebration I am touched by their response because I feel it reflects the power of the messages in the story and recognition of the stigma and challenges which children like Julius face.
There are many anecdotes I would like to share but the following simple ones, I feel, demonstrate clearly the worth of the exercise to me.
The first relates to another mother of a child with Down syndrome who wrote that she took the opportunity to show the article and explain what Julius achieved to her young son this is an example of the self-validation and enhancement of dreams that I hoped children like Julius might experience.
The second was watching a grandmother at my local news agency scan the cover of the magazine, see the reference to my article, fumble through the magazine looking for it, peruse it and queue behind me to buy the magazine.
Given my five seconds of fame I couldn't resist blurting out "that's my son". She responded excitedly saying she was lucky to spot the reference to the story on the cover and that she wanted to take "Julius" home and show the article to her daughter.
Telling the story in The Australian Woman's Weekly gave me an invaluable platform to speak directly to the broader community and hopefully in my small way to help influence expectations for children like Julius.
I was also approached by a high school English teacher who felt the article would be a good basis for discussion in her class about changing cultural perceptions such discussion would expose the peers of children like Julius, whose acceptance and understanding is most critical, to the messages of the article.
But not all the comments that I have seen have been positive or constructive. Some readers were offended, not by my article or its actual title, but by the way the article was described on the magazine cover "How a Down syndrome child became a model".
I did not anticipate that Julius' story would be referenced on the cover of the magazine but from my perspective, the decision by The Australian Women's Weekly to give prominence to Julius' story was invaluable in facilitating the community awareness I was seeking.
The criticism of the reference on the cover of the magazine to Julius' story was, essentially, that the words "Down syndrome child" emphasised the significance of Julius' medical diagnosis and not Julius' status as a child first.
The words offended the "person first" language principle a principle seen as consistent with a society that values people as people first and only recognises their differing characteristics in a secondary sense a principle that I had become familiar with (though admittedly only after our journey with Julius began).
While I recognise that the reference on the cover page could have been more "inclusive", I am nevertheless grateful for the efforts to which The Australian Women's Weekly went to provide me with a platform this country's biggest selling magazine had clearly and sincerely endeavoured, with the allocation of significant editorial space (four full pages) and prominence to the article both in the magazine and on its website, to help advance the deeper messages contained within what was in essence a "feel good" article.
It is because of this that I found the harshness and personal animosity with which some of the criticism was directed at The Australian Women's Weekly upsetting.
My fear is that discussing in the media issues like the ones I sought to include in my article becomes too difficult if the media's willingness to tackle those issues is compromised by its anxiety in dealing with the sensitivities of the subject.
This concern extends to the advertising industry and most importantly to the general public if ordinary people feel too uncomfortable to talk about issues relating to disability, because they are afraid of saying the wrong thing, then they naturally will choose not to talk about it at all that is the worst outcome, not a neutral outcome.
I think it a sad result if the sensitivities of speaking about the subject, particularly without an intention to offend, operate as a barrier to the change I aspire for my son to limit community awareness and entrench community attitudes and expectations.
Personally, I think that The Australian Women's Weekly should be commended for their willingness to advance the discussion of the subjects in my article and to highlight the achievements and contributions of people who may present "differently" and who are too infrequently celebrated.
It is also my view that those of us who stand to benefit most from broad discussion of stories like Julius' should anticipate some wrinkles along the path to a more inclusive and understanding society and be prepared, particularly in light of good intentions and a willingness to learn, to be forgiving of the media and the broader community during the transition.
As one reader perceptively said, we should not judge a book by its cover and that is also, somewhat ironically given the modelling foray, what I am asking of society in respect to my son, Julius (although I do think he is beautiful on the outside too).