'My younger brother Jonathan has Down Syndrome. From a young age, he has refused to take photos.'

I have a crystal clear memory of getting on a train once with my brother when I was about 12 years old - that somewhat awkward stage of growing up where I was old enough to take notice of the world around me but not yet sure how to navigate its challenges. 

Sitting opposite us was a middle-aged couple, dressed ready for the day and chatting quietly amongst themselves.

As we moved through the train and took our seats I noticed the couple start to stare at us, intently and with a look of bewilderment and almost disbelief. 

Image: Supplied.

Being a typical boisterous pre-teen, I stared back at them, waiting and waiting for their eyes to turn away or at the very least, lose interest in the pair of youngsters innocently riding the train. 

But they didn’t and eventually the boisterous side of me couldn’t stand it anymore. In front of everyone in that carriage, with my voice loud and proud I asked, "Didn’t your mother ever teach you it’s rude to stare?" It had the desired effect. 

Immediately they both looked away in shame. I was so proud of myself. I had been brave; I had stood up to the bullies, and I had shamed them.

But as I turned to look at my brother to share in the victory, the look on his face made it clear he didn’t share in this so called 'victory'.

His head was down, his eyes downcast, red-faced and full of embarrassment. It was he that felt ashamed because he knew they were staring at him. He knew he looked different, because he was different. 

My younger brother Jonathan has Down Syndrome. He’s an adult now, but he’s still my baby brother and my memories of our childhood are peppered with stories like the above. 

Forty years ago, growing up, we didn’t see a lot of other kids like Jono.

My mum was adamant that he would live as much of a normal life as possible, so he was given the support where he required it, but he was also encouraged to experience the same things as the rest of our family.

He went to a mainstream primary school, and he did sports and co-curricular activities like all of us. He travelled overseas to many different countries and got to experience many of life's beauties. But more than any of us he also experienced much of life's ugliness - the looks, the stares, the bullying, teasing and discrimination that came with being 'different' due to his disability.

Fast-forward a few years from the train incident and suddenly Jono stopped participating in photos. He refused and still does to this day. It took me by surprise at first and it upset me deeply. 

Image: Supplied.

Sure I don’t love photos of myself, (I very often claim to be the most unphotogenic person in the room), and yet I am able to muster the effort when there is a moment worth capturing. But not Jono. The embarrassment he feels about looking different to others runs too deep. 

I wonder would this have been any different if a person living with Down Syndrome had been more widely celebrated? If he had grown up seeing more people like him on TV, on billboards, and in the media?

Over the years I’ve become increasingly active in the disability community and it’s fair to say that we have come a long way in this space since my childhood. But every now and then, I am reminded that we haven’t come far enough.

As a marketer, a mum and the founder of a kids' social enterprise, I am incredibly passionate about ensuring inclusivity throughout my work and each and every one of my advertising campaigns features children of various nationalities, genders and abilities. 

Up until now I have relied on my network of friends and family to supply 'models', but recently I decided to put out a call to some of the major children’s talent agencies in Sydney for my next photo shoot.

The responses I received plunged me right back to that time sitting on the train with my brother.  

'Unfortunately we don’t feature any kids that meet that description.'

'How lovely that you are wanting to be inclusive. Unfortunately, we don’t have anyone on our books right now that would be suitable.'

Once again I was baffled, amazed and in disbelief. I called each and every agent and asked for more information and the most common response was 'no-one books them'. They all directed me to disability groups and communities (as if on top of everything these groups were already doing, they should also be given the job of representing kid models!)  

With 1 in 50 children in Australia having some type of disability or special need, it beggars belief that we don’t have a greater representation of these children amongst talent agencies and in advertising more generally.

Listen to No Filter, a Mamamia podcast. In this episode, Mia Freedman shared a beautiful, candid interview with Vanessa Cranfield about parenting a child with a disability. Post continues after podcast.

As a long-time veteran in the marketing world, I know that the images and messages that we put out into the world matter and this lack of inclusivity is no doubt stifling us from becoming a truly supportive, accepting and loving society.

When I look at my brother now, I often reflect on how strong he is to have been confronted constantly with the uglier sides of humanity and yet still wake up every day with so much love in his heart. This was his super power - to have so much love, to everyone and anyone regardless of what the world threw at him.  

If our companies and brands, big and small, give the next generation of kids like Jono the opportunity to feature in their campaigns, their joy and love would no doubt create a more inclusive society. 

I’d like to hope that the next generation of kids like Jono, when faced with taking a photo, will jump at the opportunity, stand proudly and smile, aware of their uniqueness and proud of their beauty.

Vanessa Rowed is a mother, sister, marketer and founder of the kids social enterprise Awakind. Shaped by her personal experience with both a sibling and a child with special needs, Vanessa is a passionate advocate for social inclusion for all children. You can find out more about Awakind on their  website or Instagram page.

Feature Image: Supplied.