I’m gearing up to tell you about one inspirational lady, but first I need to carefully paint a picture of this wonderful human being.
So stay with me, please! You too, will be impressed.
Her name is Julia. I came across her a few years ago, and was struck not only by her charm and ability, but also by her confidence.
The other night she appeared on The Drum, a political ABC program that sees journalists, politicians, and notable people, engage in high-level conversation about all manner of current issues.
These days, for health reasons, the show takes place through Zoom.
Zoom is tricky at the best of times, and sometimes guest participants have problems with their sound.
And poor Julia…just her luck…had issues with hers. But she solved them with amazing grace, and came back on air, hair a little disheveled, but still smiling, and she’d hardly missed a beat of the conversation!
Julia’s made a name for herself as an actor.
She aspires to have a role in ‘Home and Away’, an Australian ‘soapie’ (soap opera!).
She co-wrote the play, ‘You Know We Belong Together’, which, by the way, is the theme song for ‘Home And Away’, hence my title!
She’s been involved in prenatal screening, a cause that is dear to her heart.
She’s got lots to say about abortion and the need for parents to be counseled before making decisions. Carrying a baby with congenital problems, heart disease, down syndrome, and spina-bifida are three I can think of off the cuff. Julia has her deeply-held thoughts about much of this.
Julia talks passionately about movie stars who play lead roles about people with disabilities, and she doesn’t shy away from speaking her mind. For instance, she feels strongly that Tom Hanks, who played Forrest Gump in the movie of that name, was pretty good, but then, she asks, why couldn’t someone who really has an intellectual problem, have played the role?
You see Julia herself has a disability. She has Down Syndrome.
She doesn’t shy away from her disability. Instead she works tirelessly to remove the ‘dis’, something she sees as limiting.
That Julia must have had huge family support and encouragement to turn out as she did, is quite incredible. That she lives independently, is still single, her words, not mine, and is winning followers here in Australia, speaks volumes.
She is such a delicious human being!
Yet think about this. It’s only some two generations ago since mothers who gave birth to Down babies, were advised to institutionalize them.
And they did!
‘In the 1960s people with Down’s syndrome were almost automatically institutionalized at birth. Reports of life in those institutions are grim. There are stories of people pretending they could not speak or read in an attempt to go unnoticed. Others tell of shackles used to restrain unruly children and teenagers still wearing nappies because of the lack of toilet-training.
Although parents could have been aware of these conditions, few ignored the advice of doctors to institutionalize their children, many believing they were better off hidden away than exposed to the cruelty and bullying of the outside world.’
‘Hidden away’. What a sad state of affairs that was!
I so wish we could just remove the stigma of ‘disability’, and supplant it with ability. I know no Down Syndrome person who didn’t bring joy to our world. I know not one who didn’t add something to society.
Some years ago we had a boy called Peter in our school. I didn’t teach him, but another teacher and I shared one large classroom. I always knew when Peter had sneaked into my side of the room. I couldn’t see him, but I knew. The atmosphere would be subtly changed, as the students tried to hide their smiles. He’d bounce out of a cupboard, or from behind a curtain, always with the same lopsided grin on his face.
He was such a joy.
Did his parents need him? Not at all.
Shocked you, didn’t I!
You see Peter was abandoned by his natural parents and adopted by another family who already had six children of their own. That he brought happiness to his adoptive parents is undeniable. That he gave them much pleasure is also without doubt. And Peter was there to be a pall bearer for his sister, a heart specialist, who died only recently from Motor Neurons.
And Annie, yet another Down student, attended our school. She too had been given up for adoption by her mother, to her own sister who was unable to have children. Annie was a terrific student. She could read and write, she made friends easily, and her parents adored her. Sadly, despite much intervention from her teacher, she was treated badly by one boy student in her classroom. It was only one, but boy, did he make her life difficult!
On her last day at school, (her parents were going to work on a mission in Western Australia), she arrived at school with bags of presents, one for each student. As she handed them out the students thanked her, and wished her well. But when she got to the boy who had given her so much grief, she handed over the gift, then spat in his face.
That was one time when her teacher, my friend, turned a blind eye. Annie just didn’t quite have the skills to deal with his bullying over their time together, nor the words when giving the gift, but in that one action she had the last word.
We will never make our world the perfect place for children with Down Syndrome. It’s just not a reality, but we can make it so much better for them. Much of this determination to include will be filtered down by the best modeling from parents and teachers. And though this is happening to some extent, it’s not enough. What MIGHT change things, is our being willing to step out and give opportunity and voice to the Julias of this world.
Watching Julia defying the odds and building a wonderful life for herself, still brings a tear to my eyes. Through her own tenacity she commands respect from those she works closely with. She’s the finest example of how we can build hope and meaning for others less fortunate than ourselves. Check out her keynote speech here.
As a final thought, a friend of mine who has six children, the last one with Down Syndrome, said to me, “I don’t ever have to worry about where he is, he’s always polite, and he calls me Princess.’
All of that is wonderful. But we want more, so much more. And to that end, each and every one of us needs to be agents of change:
- changing attitudes
- changing perceptions, all the while opening their world to change that provides
Where would we be without the opportunities we have enjoyed?
Where might our Down Syndrome people be if we could believe in them?
‘We wouldn’t change him for the world, but we would like to change the world for him.’ Sam Newman