Paul Brock's passion for education proves essential in battling motor neurone disease

Dr Paul Brock AM at his office in Sydney

Alex Malley speaks to Dr Paul Brock on education, family and life as a motor neurone disease campaigner.

Updated 4 April 2016: Dr Paul Brock died on 25 March 2016. This article is from the March 2015 issue of INTHEBLACK.

Paul Brock is the sort of man you will rarely meet, such is the mix of his talents and life experience.

He lived as a Marist Brother for 15 years, was a schoolteacher, and then a university academic for 12 years, teaching countless university students and sharing his passion for literature, language and literacy.

With his senior role at the NSW Department of Education and Communities he is one of Australia’s most respected educators. His considerable intellect, interlaced with a feisty sense of social justice, has guided government policy for decades. He has a wicked sense of humour, adores his family and was a dab hand at cricket as a youngster.

Brock also has motor neurone disease (MND). That’s the cruel, debilitating disease that affects nerve cells in the brain and spinal cord. It’s rapidly progressing, with most patients living for only around two to three years after the onset of the disease. Brock, paralysed from the neck down, has just racked up year 18.

He is a sought-after speaker at conferences, has authored or co-written 12 books, including writing his autobiography A Passion for Life, along with 15 monographs and more than 200 academic papers.

He told his story to former CPA Australia chief executive Alex Malley.

For decades Dr Paul Brock has campaigned to improve the curriculum and quality of teaching for school students.Malley: Paul, you are the eldest of six children. Was the responsibility gene well in train when you were growing up?

Brock: I think so; my mum always referred to me as the pathfinder. I think being the eldest was good. But in many ways I was the youngest. I was, at the time, the youngest schoolboy ever to be selected in the northern NSW schoolboys cricket side [he grew up in Newcastle, NSW]. I played with and against some blokes that went on to play for Australia. I think I was the youngest school captain at my school, and I was the youngest of 50 young men who entered the Marist Brothers Order on January 31, 1959.

I’ve always wanted to make a difference. I love English language and literature, and I enjoy teaching young people. I have also got quite a buzz out of developing educational policy and practice. And I acquired a burning sense of social justice from my parents.

Malley: One of the greatest areas in which you’ve shown that sense of responsibility and leadership has been in education in Australia. You were a senior adviser to John Dawkins when he was the federal education minister (1987-1991). Can you explain what was the mindset on education in that Dawkins era, because it was renowned for some revolutionary thinking.

“The more paralysed I’ve become the more determined I’ve been not to be making any allowances.”

Brock: Dawkins was the sort of bloke who was determined to undertake reform and he certainly wanted change. I arrived there in July 1990 just after he’d transformed the universities. I left when Dawkins became federal treasurer in December 1991. During that time I was heavily involved in both writing the federal government’s Australian Language and Literacy Policy and contributing to the first serious effort to build a national school curriculum, which was driven by Dawkins. It was going really well until, unfortunately, the whole thing tumbled down in 1995, through politics.

Malley: When you look at education now, what are your thoughts?

Brock: One of the most lamentable things that has happened recently has been the federal government’s decision to abandon the Gonski report [Chairman David Gonski headed a committee that last year advised the Australian Government on education reforms].

The beauty of [the Gonski report] is that it highlighted some glaring anomalies in the allocation and targeting of educational resources and recommended a needs-based, sector-blind approach to resource distribution. It wouldn’t matter whether it’s a public, a Catholic, or an independent school – the allocation of funding would be according to real needs. But the opponents cried, “Oh we’ve been throwing money at schools without seeing positive results”.

A fundamental problem has been that the allocation has not been based on real need, and a lot of the money has often been thrown in wrong directions. For example, we need appropriate funding to ensure high-quality, pre-service teacher education, and high-quality teaching in every classroom, and to deploy authentic forms of accountability for both.

I also feel strongly about Aboriginal education. I admire Chris Sara, an Aboriginal former principal of Cherbourg State School in Queensland, a school which he completely turned around. He set demands for high standards, high expectations. Not being patronising, not saying, “Well, these are Aboriginal children we’ll just make it easier for them.”

One thing that’s bugged me all my career is the failure to recognise that what is necessary is not always sufficient. For example, the subject of English is so much broader and richer than basic literacy. Just as mathematics is much broader and richer than numeracy. English includes literature in its various forms, [as well as] developing students’
reading, writing, listening, speaking and viewing; debates, creative writing, public speaking, studying and acting out drama; and so on.

One other thing that has concerned me through much of my career is what happens at break-points in education. So for example, kids in primary school get to sixth class and become school leaders. Then they go to high school and suddenly they can become the “babies” of the school. Sometimes these kids can get dumbed down by the lack of continuity of learning between primary and high school. I’ve seen this sort of thing in the transition to university, too.

Malley: Considering all those experiences, I see someone who is adept politically. I see a competitive soul and a spiritual person. How do you reconcile all of those sides?

Brock: As Marist Brothers we were supposed to practise three virtues especially: humility, simplicity and modesty. I would come home from parliament and say to Jackie [Paul’s wife], “Darls, I didn’t see much humility, simplicity and modesty on display today.”

When I started at Sydney University, I made a vow to God that I would never get merely a pass. The first year I busted my guts and got the maximum four credits. Second year I’m doing really well. But six weeks out of the final exams I end up in hospital with ruptured appendix, peritonitis, sick as a dog. My mum was told I nearly died.

When I left hospital, exams were only two weeks away. I got Dad to give me a torch and I studied like mad for two weeks under the blankets before dawn and after lights out. I managed to get a distinction and two credits. In third year, I got distinctions in both subjects. The next year, I finished a Bachelor of Arts (Honours) in English. My vow had been fulfilled! So there is something of bloody mindedness or determination in my make-up.

Those days [with Dawkins] while very interesting, even exciting at times, were hard work. I had to survive some pretty tough times but I’m a bit of a survivor.

“I would come home from parliament and say, ‘Darls, I didn’t see much humility, simplicity and modesty on display today’.”

Malley: It’s fascinating that in life you honed particular skills and little did you know you were honing this for the battle you never expected. Still not enough people know about motor neurone disease. Share with us the moment when you were diagnosed.

Brock: I noticed when my youngest daughter Amelia was only a year old that I was unconsciously supporting one arm when picking her up from her baby seat in the car. A neurologist told me I probably had motor neurone disease. I said, “If so, what’s my prognosis?” He told me “three to five years”. I rang Jackie. She collapsed.

Shakespeare’s Macbeth immediately roared through me. You know where Macbeth, realising that his number’s up, says that life “is a tale / told by an idiot, full of sound and fury / signifying nothing.”

But almost immediately I was reminded of King Lear. Feeling abandoned by his daughters a near delirious King Lear roars around the stage demanding to know how he can possibly cope with the devastation into which his life had fallen. The court jester says to his master: “He that has and a little tiny wit / with heigh-ho, the wind and the rain / Must make content with his fortunes fit.

Though the rain it raineth every day.” You just have to do your best to cope with catastrophe – endurance is all. There are probably all sorts of reasons why I have survived this long.

Malley: At the core of it is determination and will. From that early moment where your mind is spinning and you’re thinking “How do I cope with this?”, how has that mindset evolved through all this?

Brock: Well it’s not just my will and determination, it’s also the marvellously wonderful loving support of Jackie. She is 20 years younger than me. We were married in 1989, incredibly happy marriage, and this bombshell hits both of us. There would be partners who would have left and who do leave. She is a gorgeous woman and highly intelligent; she’s an associate professor. And our daughters, Amelia and Sophie. One of the things we’ve done and we still do, we laugh.

But I have also received great support from this department. [Brock is director of learning and development research at the NSW Department of Education and Communities]. The former director-general, Dr Ken Boston, told me very early after my diagnosis that he considered me to be a “highly valued” member of the department and that he would do everything in his power to keep me here “for as long as possible”. The department has maintained that support ever since.

Today Brock shoes extraordinary courage in a personal battle that he’s calling on  the public to learn more aboutMalley: I’m inspired by the depth of your career and how you have approached this challenge. How important is the mind and the attitude and the drive? What have you called on in the darkest moments?

Brock: I keep busy. I’ve been determined to retain my position in the department. The more paralysed I’ve become the more determined I’ve been not to be making any allowances; to be working just as hard for just as long, just as productively as anybody else would be expected to be in my position.

I want to be able to keep everything going for as long as I can. It’s been very financially difficult for us with this disease. Without my income as well as Jackie’s it would be very difficult to attain the quality of life to which we both aspire for ourselves and our children.

There’s been a sense of fear as well; you just push that away and keep working flat out.

My darkest moments? They include the emotional and psychological pain that I can’t even reach out and hug Jackie or hug my kids. Or at a social event when I can’t initiate discussion, I have to hope that someone will come over, lean down, and talk to me.

My darkest moments also include thinking about the possibility of how my life could finish up. When you might enter into an almost vegetative state – when you can think and understand everything that is going on around you but you can’t give any indication except by blinking your eyelids. It’s quite terrifying. I sort of hope that I’ll have a heart attack or something, rather than go through those processes, and all that would mean for Jackie and the girls.

"My darkest moments? They include the emotional and psychological pain that I can’t even reach out and hug Jackie or hug my kids."

Malley: Motor neurone disease is known by several names, which hampers our efforts to raise awareness. But we do need to give this more exposure?

Brock: We do. Those of us with MND are not only running out of time, we are running out of patience when we listen to those in the scientific research community who tell us, yet again, all about the obstacles to discovering ways of significantly ameliorating the impact of MND, and to finding a cure.

Therefore, inspired by the late, great Christopher Reeve, I have repeatedly said to researchers, bureaucrats, parliamentarians, cabinet ministers, and investors in the medico-scientific industry – people who  have the capacity to slow down this murderous disease and eventually to find cures: “Our houses are already on fire, and we need you to put them out. Now!”

What teachers should do

Brock, as a father and educator, lists three fundamental principles that should underpin teaching and learning:

“First, to nurture and challenge my daughters’ intellectual and imaginative capacities way out to horizons unsullied by self-fulfilling minimalist expectations. Don’t patronise them with lowest-common denominator blancmange masquerading as knowledge and learning; nor crush their love for learning through boring pedagogy ... don’t limit the exploration of the world of evolving knowledge merely to the tyranny of repetitively churned-out recycled worksheets. Ensure that there is legitimate progression of learning from one day, week, month, term and year to the next.

“Second, to care for [my daughters] with humanity and sensitivity, as developing human beings worthy of being taught with genuine respect, enlightened discipline and imaginative flair.

“And third, strive to maximise their potential for later schooling, post-school education, training and employment, and for the quality of life itself so that they can contribute to and enjoy the fruits of living within an Australian society that is fair, just, tolerant, honourable, knowledgeable, prosperous and happy.”

From A Passion for Life (ABC Books, 2004), pp 250–251.

Motor Neurone Disease (MND)

  • Motor neurone disease is known as ALS or Lou Gehrig’s disease in North America and as Maladie de Charcot in France.
  • Sufferers progressively lose the use of their limbs and the ability to speak, swallow and breathe, while their mind and senses usually remain intact. There is as yet no cure.
  • Average life expectancy is about 28 months. The majority survive for three to five years, but some sufferers, like Paul Brock and Stephen Hawking, have a slow-burning version and live for much longer.
  • The Ice Bucket Challenge that went viral on social media in 2014 raised the profile of the disease and millions for education and research.

Video by: Amelia Brock (daughter of Dr Paul Brock) and her fellow media and communications students at the University of Sydney

This article is from the March 2015 issue of INTHEBLACK.

March 2015
March 2015

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