Rebuilding Lives, Empowering People and Preventing Injuries

Fifty years ago Robert Menzies was Prime Minister, trams were still a public transport option in Brisbane and for people with a spinal cord injury, life was extremely challenging.

Tuesday, 9 March marked the 50th anniversary of the first meeting of the Spinal Injuries Association, which was then called the Paraplegics Welfare Association.

To mark this milestone occasion, patron of the Association, Her Excellency, Ms Penelope Wensley AO, Governor of Queensland was guest of honour at a commemorative morning tea at the organisation’s office in Woolloongabba.

Past and present board members, staff and Association life members celebrated the golden anniversary with the Governor, who spoke about the Association’s journey over the past five decades.

Association member Zita Mullins was at the organisation’s first meeting 50 years ago and today she shared her sentiments with guests at the morning tea.

“There was plenty of excitement and energy in the air that warm March evening. There’d been plenty of talk for so long about establishing an organisation that supported people with spinal cord injuries and it was great to see the first meeting finally take place,” Zita said.

Such was the lack of education and awareness in the community at the time about people with spinal cord injuries that Zita herself was unaware she had paraplegia until just before the Association’s first meeting.

“Even as a wheelchair user, I didn’t realise 50 years ago that I had paraplegia,” Zita said.

“I’d had polio as a child, which led to me having to use a wheelchair. It wasn’t until I met a doctor leading up to the first official meeting, that I was told I in fact had paraplegia.

“I said to this doctor, ‘should I become involved in the Paraplegics Welfare Association when I only have polio?’ He told me that spinal cord injuries don’t just happen in car accidents, they can also be caused by diseases such as polio and transverse myelitis.

“At 36 years of age, I finally had a proper diagnosis for my condition. You could never imagine that happening these days.”

Spinal Injuries Association CEO Mark Henley, who has been with the organisation for 21 years, said the commemorative morning tea was a celebration of all that had been achieved.

“Since the first meeting of our organisation on 9 March 1960, the overarching aim and values base of our Association has been to enhance the lives of people with a spinal cord injury,” Mr Henley said.

“We have always advocated for people to have the appropriate supports to be as independent as possible.”

“Every member of our Association has the right to live as independently as possible in their own home and participate in their community. That’s our objective for everything that we do here.”

Mr Henley also sees the half-century milestone as an opportunity to reflect on the achievements of the Association and to plan an even stronger foundation for assisting people with a spinal cord injury into the future.

While the consequences of a spinal cord injury are devastating, Mr Henley said the Association always strived to support and encourage members to focus on their abilities, and what is achievable.

“We want our members to be able to access every aspect of life and contribute to their community and region,” he said.

“We don’t make decisions for people, we make sure they have right information so they can make their own choices.”

“Our focus continues on developing inclusive communities.”

The Spinal Injuries Association’s 50th anniversary year is shaping up to be one of the most significant, and busiest, for its CEO Mark Henley.

2010 will mark Mr Henley’s 22nd year with the not-for-profit organisation, and his 11th year as its CEO. Coincidentally, this year Mr Henley will also celebrate his 50th birthday.

He is equally as ardent about empowering and supporting the Association’s 2,000 Queensland members and clients as the day he started at the organisation as an accountant.

“Since the first meeting of our organisation on 9 March 1960, the overarching aim and values base of our Association has been to enhance the lives of people with a spinal cord injury,” Mr Henley said.

“We have always encouraged independence, supported each individual’s needs and advocated for appropriate support.

“For many years now we have not focused on group homes or group buses.

“Every member of our Association has the right to live independently in their own home and participate in their community. That’s our objective for everything that we do here.”

With 90 staff between its Brisbane and Townsville offices, as well as around 600 Personal Support Workers in most regions throughout Queensland, Mr Henley said the Association provided support for members from when they were newly-injured patients at the state’s only Spinal Injuries Unit in Brisbane, through to their transition to home and work, and for the rest of their lives.

Mr Henley sees the half-century milestone as an opportunity to reflect on the achievements of the Association and to plan an even stronger foundation for assisting people with a spinal cord injury.

“There are certainly much higher expectations of us now – from clients, the community, government and board – as to how we operate,” he said.

“We say we’re running a business – and we are. Anyone who thinks they’re coming to work for a not-for profit because it’s a cushy environment, doesn’t last long.”

As well as the day-to-day intricacies of overseeing such a large not-for-profit, Mr Henley is also a member of multiple advocacy groups including Blue Skies, made up of like-minded people working in the disability sector who are advocating for an inclusive community welcoming of all people; the Disability Alliance, a network of Queenslanders campaigning for better supports, services and funding from government; and the G8 group, which has representatives from eight large disability service providers in Queensland who are lobbying for more appropriate support levels from government.

Mr Henley said the next 18 months would be particularly significant for the disability sector after Prime Minister Kevin Rudd’s November announcement that a feasibility study into a National Disability Insurance Scheme (NDIS) would be conducted.

The results of the study will be delivered in July 2011, with its findings potentially affecting millions of Australians with a disability and those supporting them. The proposed scheme means all people with a severe disability will receive funding and support for a lifetime.

“This funding should go beyond providing the desperately-needed financial support for people with a disability and their families, and create the inclusive community the sector is striving towards,” he said.

During Mr Henley’s 22 year tenure there have been many highlights, particularly the introduction of the Spinal Cord Injury Response (SCIR) program, which supports transition from the Spinal Injuries Unit with personal supports, equipment and housing support.

“Also, being able to offer our Spinal Education Awareness Team (SEAT) injury prevention program free to all Queensland primary and secondary schools is another immense achievement,” he said.

“In the past 23 years since SEAT began, our presenters, who either have quadriplegia or paraplegia, have shared their experience and safety messages with more than 1.3 million Queensland school children.

“Coinciding with the success of our program, in the past 10 years Queensland has gone from having the highest incidence of spinal cord injuries in Australia, to now having the second lowest rate.”

Despite the growing awareness of how easy it is to sustain permanent paralysis, 90 Queenslanders a year are still sustaining spinal cord injuries – a terrible average of one person every four days.

“It’s not only the physical loss, but the financial and emotional strain on people sustaining these types of injuries, and their families, is enormous,” Mr Henley said.

“The annual cost to the community for 90 people with a spinal cord injury to be hospitalised and then return home is more than $26.5 million. And when you consider that around 500 Australians a year sustain a spinal cord injury, that’s more than one billion dollars to the community.”

However, while the consequences of this type of injury are devastating, Mr Henley said the Association always strived to support and encourage members as they focus on their abilities, and not their disability.

“We want our members to be independently able to access every aspect of life and contribute to the community and their region,” he said.

“We don’t make decisions for people, we make sure they have a choice and the right to make that choice.

“Our focus is always going to be around inclusive communities.”

A typical day for mother-of-two Katie Franz reads like many other working mums: up early to organise her two young daughters to get them to school on time, some quiet reprieve in her car while she drives to work, a busy day at the office, then back to school to pick her girls up and home for dinner where all of the associated tasks that come with being a married mum await.

What sets Katie apart from many other mums is that she uses a wheelchair after sustaining paraplegia in a car accident when she was just 16.

Now aged 30, Katie said when it sunk in that she had a permanent injury all those years ago, she made a conscious decision to continue making the most of every opportunity.

“I have always had an optimistic mindset. I was a kid, just 16 years old, when I had my injury and my philosophy in life then was basically to get out there and have fun,” Katie said.

“If you say ‘no’ to something, you will miss out. I like to take opportunities and make the best of them. My parents would always say to me to give it a go.”

Katie met her husband-to-be Danny just before she was discharged from the Spinal Injuries Unit, and they married three years later. Katie said she always knew she wanted to be a mum.

“As well as the usual decisions that are typical for any couple contemplating having a baby, we also had the added questions of what my injury would mean during my pregnancy, the birth itself and of course the everyday issues of raising children,” Katie said.

“But like anything, I saw our situation as a challenge that was more than worth the hard times.”

Chelsea was born in 2001, followed by Tiana in 2004.

“My daughters have their own views on my disability,” Katie said.

“Sometimes they say it sucks because they want me to help them climb a tree or go to the beach. But we have lots of aunties and uncles around to shove them up that tree or take them to the beach.

“My girls don’t know any different. That’s the up-side of it. They have only ever seen me use a wheelchair so to them it’s the complete norm.”

Katie also said it was important for her to remain positive not only for her frame of mind, but to lead a good example for her girls.

“If I don’t care, they don’t care. If one of their friends asks them why is your mum in a wheelchair, they just say: ‘she hurt her back and her legs don’t work and come on now, I’m going to the tuckshop because I’ve got $2 to spend!’” Katie said.

“It’s really not an issue for them, which makes it a non-issue for their friends.”

A qualified personal trainer, Katie enjoys regularly going swimming with her daughters.

“I must admit I often see people doing a double take when they see me slide from my wheelchair into the pool, but they’re always positive, giving me the thumbs up and saying ‘good on you’,” Katie said.

 “It’s always a good feeling to challenge people’s perceptions of what people with a disability can do.

“Being a mum is a right any women should have, regardless of whether or not they use a wheelchair.”

It’s this positive attitude that has made Katie such a highly-regarded member of the Spinal Injuries Association’s Peer Support team.

As a Peer Support Officer, Katie meets and shares advice with newly-injured patients at Queensland’s only Spinal Injuries Unit at Brisbane’s Princess Alexandra Hospital.

“It’s the perfect job for me because it allows me to share my experience with people that are still in the recovery and grief phase of having their spinal cord injury,” Katie said.

“My outlook on life is extremely positive; I push the boundaries of disability on a daily basis and I want to inspire others to adopt that same philosophy.”

If Peter Harre had a dollar for every time he heard or read the phrases “wheelchair bound,” “confined to a wheelchair” or “suffered a spinal cord injury,” he would have quite a hefty bank account.

As a person who has used a wheelchair for the past 20+ years, Peter said it was still common to hear these negative phrases used in everyday conversation or in the media.

“Wheelchair bound, confined to a wheelchair, disabled, handicapped – these words all conjure up images of quite a sad person sitting and wilting away in their wheelchair,” Peter said.

“While we’ve just entered a new decade, ignorance and a lack of awareness in society means that people in our community who have a physical disability are often made, whether intentionally or unintentionally, to feel like second-class citizens.

“The way we refer to people affects how we feel about them, how we portray them to others, and how they feel about themselves.

“Using appropriate words when talking to, or about, someone with a spinal cord injury or another disability, is an important part of ensuring that people with a disability are seen like everyone – as a person first.”

Peter has hundreds of examples of how people with a physical disability have been treated differently by others. He believes this treatment is often perpetrated by the myths surrounding people with a disability.

“My wife and I went out to enjoy a restaurant meal. When the time came for the waitress to take our order, she wrote down what my wife wanted, then asked my wife, ‘and what will he be having?’ instead of asking me directly,” Peter said.

“It’s more common than not for people to assume that because you use a wheelchair you automatically have an intellectual disability, which can be extremely demoralising.”

A particular mortifying experience occurred while Peter was at a casino. The room was quite crowded and instead of going around him, a punter climbed over Peter in his wheelchair, as though he was some form of mountain climbing apparatus and not a person.

“You do unfortunately get quite used to these experiences. But, I’m not tarring all of society with the same brush. For every ignorant person, there is another person who treats you as their equal.

“Through some fairly simple awareness raising campaigns, incidents such as the ones I’ve mentioned could be abolished even further.”

Peter made the comparison of Indigenous people or people from other cultures being called derogatory terms and how this is no longer tolerated in everyday society.

“The same emphasis of not labeling people should be placed on people with disabilities,” he said.

“It is another form of discrimination after all.”

Spinal Injuries Association CEO Mark Henley said currently around one in five Australians had some form of disability (ABS 2008).

“Chances are, someone in your family, your social group or somebody you work with has a disability,” Mr Henley said.

“Using positive language is easy to do once you realise the negative connotations many old-fashioned terms such as ‘slow’ or ‘disabled’ have.

“All people, regardless of their physical disability, have the right to live in an inclusive, equitable environment where they are spoken to the same as anybody else.”

The guidelines below are a helpful indicator of what is appropriate language to use when talking about, or to, someone with a physical disability.

Don’t say – Disabled, cripple, handicapped, suffering

Instead say – A person with a disability

Don’t say – Subnormal, retard

Instead say – A person with an intellectual disability

Don’t say – Spastic, spaz

Instead say – A person with cerebral palsy

Don’t say – Wheelchair bound, confined to a wheelchair

Instead say – A person who uses a wheelchair

Don’t say – Deaf and dumb, mute

Instead say – A person with a hearing impairment

Don’t say – Epileptic

Instead say – A person with epilepsy

Don’t say – Mongoloid

Instead say – A person with down’s syndrome

Don’t say – Schizo

Instead say – A person with schizophrenia.

A big congratulations to five of our hard-working members who were recognised at Australia Day award ceremonies around Queensland.

Des Ryan was named the winner of the Rockhampton Regional Council Community Service Award for his 20 years of dedication to the region. As Rockhampton Member Networks Facilitator and a past Association board member, Des has worked tirelessly to create a more inclusive environment for members of the Association and other residents with a physical disability.

Spinal Education Awareness Team (SEAT) veteran presenter Wayne Leo was honoured with a Lord Mayor’s 2010 Australia Day Achievement Award in the Brisbane City Council awards, for his 23 years as a volunteer with the program.

Congratulations also to SEAT presenter, Ayr/Burdekin Member Networks Facilitator, former Association Vice-President and current board member Scott Stidston for being named a finalist in the esteemed category of Citizen of the Year for the Burdekin Shire Council 2010 Australia Day Awards.

SEAT presenter Wayne Horkings was a finalist in the Frank Lenz Memorial Award for Volunteer of the Year category at the Logan City Council Australia Day awards ceremony, and Gold Coast Post Polio Support Group Convenor Lyn Glover was a finalist in the Gold FM Community Service Award category for the Gold Coast City Council’s Australia Day awards.

Thank you to all our volunteers throughout the Association who give so freely of their time; your ongoing support is truly appreciated.

This time last year, Mansfield’s Steve Fell faced the prospect of forced retirement at the age of just 45.

The father of three girls was in such excruciating pain from a motorbike accident in 1982 that he could barely walk, let alone fulfill all of the responsibilities required of him as Owner/Manager of his Snap-on Tools franchise.

“I thought I’d have to sell my business, which I love, and which my wife and I have owned for the past nine years,” Steve said.

“My pelvis was shattered in the accident all those years ago and my condition has degenerated to the point that I now need to use a wheelchair to remain mobile.”

However Steve’s “bulldog” instinct – never backing down from a challenge – kicked in, and he decided to find a way of being able to remain a business owner.

After contacting the Spinal Injuries Association’s Employment Options service, which exclusively assists people with a physical disability to find or stay in employment, Steve worked with Employment Consultant Sandy Shearer to apply for, and receive, funding from the Federal Government’s Workplace Modifications Scheme. Robyn Molan who was appointed as the Workplace Modification Assessor was also instrumental obtaining funding approval and ensuring the equipment purchased matched Steve’s specific needs.

“The financial support we will receive from the scheme will allow Steve to purchase a manual wheelchair. It also covered the cost of tradespeople gutting the entire interior of the truck and re-building it so the shelves and bench tops were accessible,” Sandy said.

“An electric ramp was also fitted to the rear of the truck to allow Steve easy entry, and the truck was turned into an automatic vehicle.

“It doesn’t matter which area he is in inside the truck, he can reach up or down to everything that he needs, giving him the independence to remain employed.”

Steve said without the assistance of Employment Options he would be “on the scrap heap, wondering what to do next.”

“Sandy bent over backwards to assist me, and her negotiations between suppliers and fitters enabled the smooth transition of transforming my truck into an accessible vehicle that still allowed me to do my job,” he said.

Spinal Injuries Association CEO Mark Henley said this year Employment Options had secured almost $450,000 in Workplace Modifications funding for clients.

“This is a record for the service and one of the highest amounts in Australia,” he said.

“This funding has made an enormous difference to our clients as it has increased their independence and minimised the impact of pain and fatigue at work.

“Other examples of equipment purchased this year include height-adjustable desks, a forklift, speech recognition software and electric page turners.”

Queensland school children will benefit from the generosity of a North Queensland-based mine that is the newest sponsor of the Spinal Education Awareness Team (SEAT) program.

It is expected that more than 100,000 school children around the state will be inspired to stay safe on the roads, in the water and beyond this financial year, thanks to the outstanding support of $125,000 by BHP Billiton Cannington Mine.

The Mine’s support has meant the award-winning program can be offered at no cost this financial year to schools for the first time in nearly 20 years.

Already, more than 65,000 Queensland children have seen or are booked in to see the program, which has presenters who have a spinal cord injury informing and inspiring students about safe behaviours.

Spinal Injuries Association CEO Mark Henley said the ambitious target of sharing life-changing safety messages with more than 100,000 school students before 30 June next year was on track to being achieved.

“This week is Spinal Injuries Awareness Week and we are delighted to announce BHP Billiton Cannington Mine’s support – and the dramatic results of that support,” he said. “This increase in bookings is a tremendous result for SEAT as the more children we can inspire to think about safety and the consequences of their actions, the fewer young Queenslanders will be injured.

“The feedback we have received from teachers and principals, especially at small schools in regional and remote areas, is that they could never afford the program in the past even though we only charged $1 per child.

“Now that SEAT is at no cost for this financial year, we can barely keep up with demand. For example, in October last year, 8,885 children viewed the program compared to 16,645 children in October this year – that’s an 87% increase in just one month and I hope that BHP Billiton Cannington Mine staff and management are incredibly proud of what they are helping us to achieve.”

BHP Billiton Cannington Mine General Manager Bob Fulker said: “As Zero Harm is the number one priority for Cannington, supporting the Spinal Education Awareness Team in Queensland is a wonderful opportunity for us to make this aspirational goal real for the next generation.

“Cannington has a long running relationship with the Spinal Injuries Association. Seeing how much impact the SEAT program is having across the state reinforces the value of our relationship,” said Mr Fulker.

SEAT has been operating as a service of the Spinal Injuries Association for 22 years and has shared safety messages with nearly 1.3 million children around Queensland in that time.

“Coinciding with the success of SEAT, Queensland has gone from the state with the highest rate of spinal cord injuries to the state with the second lowest rate,” Mark said.

“Around 90 people will still sustain a spinal cord injury every year in Queensland, however. Road trauma continues to be the major cause, followed by falls/crushes and water-related accidents.

“The more children our presenters can reach out to with their personal and very powerful stories – the better our chance to further reducing injuries that will have a lifetime of consequences.”

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The Woolloongabba Rotary Club has supported a local charity by generously donating $2,500 towards the organisation, from money raised at a sausage sizzle.

On Wednesday, 11 November, Woolloongabba Rotary Club President Rod Scott presented the Spinal Injuries Association with the funds at the club’s dinner meeting.

Mr Scott said as the Spinal Injuries Association was a Woolloongabba-based organisation that assisted around 2,000 people throughout Queensland with a spinal cord injury, Rotarians felt it was important to support a local not-for-profit group that empowered so many people throughout the state.

The Association was one of several local charities supported after the group of dedicated Rotarians cooked and sold more than 2,000 sausages at the Boggo Road Busway Alliance Open Day in August.

Spinal Injuries Association CEO Mark Henley said the tremendous fundraising support of the Woolloongabba Rotary Club would go directly into the Association’s injury prevention program, the Spinal Education Awareness Team (SEAT).

“This year, our 15 SEAT presenters throughout Queensland, who either have quadriplegia or paraplegia, will share their stories and safety messages with more than 80,000 school children from Prep to Year 12,” Mr Henley said.

“The Woolloongabba Rotary Club’s support means more children will be inspired to stay safe on the roads, in the water, on the sporting field and beyond.”

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