If you have not noticed, Julia Gillard got cast on the scrapheap. Julia Gillard was, of course, the Prime Minister of Australia. I think she was a great Prime Minister who achieved much in difficult political circumstances. History will be kind to her, particularly her efforts to push through the National Disability Insurance Scheme.
The last weeks of Julia Gillard’s reign were marked by a frantic push to get the NDIS legislation through parliament. During this time Julia Gillard met with many people with a disability. She gave her time to answer questions from people with a disability, their family members and service providers. During one of these many meetings Julia Gillard was to meet Tom Softly. A beautiful and impromptu photo was taken. In this photo was a clearly joyous and excited Tom Softly. The then Prime Minister shook Tom’s hand and beamed the most warm and genuine smile. Both Tom and Julia Gillard were clearly enjoying the moment equally.
Well we all know who Julia Gillard is. She will soon be lost to politics forever. But who is Tom Softly?
Tom has Down syndrome and was born almost 29 years ago. He lives at home with his Mum and Dad, and his Boxer dog, Bella. He has two younger sisters and a 4-year-old niece – he loves being Uncle Tom. He works in a recycling factory three days a week, and enjoys the social scene at work and the canteen where they make great chips. Tom wants a more challenging job, one that will get him out into the community and meeting people.
Tom lives in Western Australia. Because of this his future is particularly uncertain. It is uncertain because Western Australia has yet to sign up for the NDIS. The Western Australian Premier, Colin Barnet, insists that WA has a great disability support system. Tom’s mother Jackie disputes this, “The actual figures are that only 20% of people with a disability who apply for funding in Western Australia get it. Many families like ours are told not to bother applying because we will only get funding when we are dead or bloody close to it.“ Not surprisingly Jackie is a strong advocate for the NDIS. She wants Premier Barnet to stop playing political games and sign up immediately.
But back to Tom. Tom has some great skills. His great love is riding motorbikes which he has done since he was 15 years old. Tom rides in Observed Trials. Observed Trials is a motor cycle sport that involves standing on the foot pegs and balancing while undertaking ridiculously impossible jumps and manoeuvres. These rides are routed over rock formations and through creeks. Tom has shelves of trophies and medals and is a respected rider among his peers. Tom is known for his courage. If he takes a tumble he gets back on again and has another go. Tom doesn’t use much speech. Despite this he is an active member of two clubs. He is well liked among his friends and goes by the nickname of “The Shark”.
Tom’s is a go-getter and also enjoys kayaking in summer. He recently has taken up golf. His other passions include Doctor Who, Guns n Roses, Michael Jackson and Queen. His favourite meal is bangers and mash. He loves Rottnest Island, particularly its bakery that sells huge Hedgehog Slices. He’s never happier than when he’s enjoying a drink with family and friends at the Quokka Arms. Most of all Tom is Tom and people love him for that. Says Jackie, “He knows more neighbours than we do. He mows our lawns and we have the best lawn in the street because of his careful work and ‘no rush, do it properly’ attitude to life.”
Tom gets frustrated when people underestimate him. Jackie explains, “Every single day people underestimate him, stare at him and often talk about him in front of him. He endures their low expectations at work, and in other settings. Often it’s people who should know better but don’t see Tom, they just see the stereotype.” Jackie is a typically proud mother and the lack of support in the system frustrates her no end, “He has so much potential, but the system – education, employment, lack of adequate support and people’s attitudes make it incredibly hard to even be in places and positions where he can learn and grow.”
And that moment with Julia Gillard, how did that come about?
As Jackie recalls the day her pride for Tom and respect for Julia Gillard is apparent. Jackie and Tom had rocked up early for an event organised by Every Australian Counts that the former PM was attending. They assisted to prepare nametags and the like. Jackie explained to one of the organisers that Tom had a gift for the Prime Minister in the form of a Down Syndrome Western Australia Calendar. Tom was Mr January and he had signed it especially for the PM. Tom had always been interested in Prime Ministers. When he was younger he once had pointed to the TV and said, “Bob Awk”
The organizer arranged so that Tom could sit next to the PM and give her the Calendar. Jackie recalls that when Tom gave the PM the Calendar and offered her his hand to shake, the PM’s reaction was genuine and warm. The photo took every one by surprise and the pose that Tom struck is reserved only for people that he genuinely likes and respects. “The respect” says Jackie, “Was mutual and was reciprocated by the PM.”
Through out the event Julia Gillard made sure she listened to everyone’s stories carefully. When asked, she was only to happy to provide Tom with an autograph. A very small gesture that highlighted the former PMs genuine respect is fondly remembered by Jackie, “The Pm had told Tom that she was pleased to have met him. As she was doing this another person asked her for an autograph. Tom’s pen, that she had used to sign the autograph, was on the desk in front of Tom. The PM smiled at him and asked if she might borrow his pen.”
This small gesture was, for Jackie, the ultimate mark of respect. Another person might have just taken the pen or asked if the pen could be borrowed through Jackie rather than asking Tom directly. It was just a small token act but one that spoke volumes for PM’s attitude towards people with disabilities.
As for Tom, he took meeting the PM in his stride. But whenever he sees that photo his eyes light up and he breaks into a broad smile. It is just another highlight of a life that has been well lived.
4 thoughts on “Introducing Tom Softly”
I’m all for the disability scheme, but I wonder how many of you know that part of the monies to be given are in fact robbing Peter to give to Paul. I work as a direct care giver for people with intellectual disabilities with DHS in Melbourne and we hae been told that our current disabled clients will be getting major funding cuts, so the money can go to others for the NDIS. They already live on budgets that are tight. I’m no expert on the ins and outs of all of this. I am howeer at the pointy end of the stick and will see and to deal with the fall out of this. Time will tell how honest the NDIS is. I hope I am wronge.
I do take your point. As we move to more client controlled market based services a lot of traditional, block funding type services will fall by the wayside. Some will have to adapt, some will successfully and others will simply die out.
In this transition period there will be a great deal of uncertainty. People will fear for the services that they receive and people will also fear for their jobs. It will not be easy. But I do feel the NDIS is the way forward. That said, there is some pain ahead.
When people with disabilities on tight budgets get their funding cut and then you hear pollies getting lovely pay rises you do wonder what the priorties are. The fact is giving money to people with disabilities is a not for profit business. They would rather not have to do it. DHS’s motto is people first. No, its budget first and who yells the loudest get heard 2nd. If you don’t know the rules, band together and say no loudly you just get side swipped.
Lovely human interest story. I still vividly remembered how she approach, spoke and responded to PWD when Vic signed up out if the blue on that cool Saturday afternoon. This article resonates the atmosphere that day.
On ya Tom. Hats off to you and Jackie. May we continue to break the stereotype.
And Tom, doing those tricks on the motorbike ain’t easy. It just shows to prove everything is in the mind. 😉