Julian Trollor
Hello and welcome. I'm Professor Julian Trollor, Acting Director of the National Centre of Excellence in Intellectual Disability Health at UNSW Sydney. Today we're interviewing Emeritus Professor Helen Beange.
Professor Beange is a revered senior colleague and mentor in the field of intellectual disability health.
For over 40 years Helen provided health care for people with intellectual disability and leadership in our field, and was a powerful advocate for better services.
In 2002 she, along with colleagues Dr Seeta Durvasula and Wesley Baker, published a seminal paper which showed that adults with intellectual disability died 20 years younger than the general population.
For many years, Helen's work shone a light on the high incidence of undetected health problems and the need for better health care for people with intellectual disability.
Today, it's unrefutable that people with intellectual disability have the right to good health, but this was not so clear just a few decades ago when Helen first highlighted these disparities. She's championed this issue and provided a message of hope through her career that this problem should and can be solved.
Hello Helen. Lovely to be with you today.
Helen Beange
Hello Julian.
Julian
So, Helen, can you tell us a little bit about your early life and how you came to be studying medicine?
Helen
Well, I grew up in Western New South Wales. My father was a junior magistrate. We moved from one little town to another, and I finally went to a boarding school in Sydney and did the Higher School Certificate, or Leaving Certificate as it was then. And I was awarded one of the rare scholarships that were available then to attend Sydney University.
So I said to my father, ‘what on earth should I do with it?’ And he said, ‘do medicine, that's a good sort of career for a woman.’
So I said, okay!
Julian
It sounded like you were almost an accidental doctor.
Helen
Exactly. That's precisely what I was.
Julian
And so how did it come that you were working with people with intellectual disabilities?
Helen
Well, that's a bit of a longer story. When I graduated, I did the usual residencies in various hospitals.
And then I met a naval officer. I know it sounds silly – in the middle of the Riverina I met a naval officer who had just returned from the Korean War. And he was a sort of decorated war hero and a rather glamorous figure.
So we got married, and then we spent quite a lot of time just following a fleet around Australia. And I had six children and we ended up at one stage in the Philippines.
And when we got back to Sydney with six children, didn't have any money, you know, and everything was more expensive. And it gave me a perfect excuse then to say, gosh, I've got to get back to doing medicine. I’d always wanted to, but you can't really do it when you're following a ship around the world.
Julian
So what did that first job with people with intellectual disability involve and how did you come to be in that role?
Helen
Well, it came to be that, first of all, having done a bit of a refresher course, which was designed by me going to North Shore Hospital and saying to people, ‘can I come in and sit in your outpatient department and listen to what you do?’
And the people at North Shore, who were all men, were absolutely charming to me and treated me with perfect courtesies.
Then I tried to get a job. And that wasn't easy because I sent letters saying I'm a married woman with six children. Then somebody that I'd known very well said, come and work with us at Grosvenor.
Can I describe what Grosvenor was?
Julian
Absolutely.
Helen
Well, Grosvenor was a diagnosis and assessment centre for people with intellectual disability – children with intellectual disability – and we were referred to as ‘the guardians of the waiting list’ because it was quite hard to get children into care in those days.
And so we had to do psychological and medical assessments. And very often those people were the most in need because they had a lot of physical things wrong with them.
Julian
Can you tell us about some of the early forays into research that you made?
Helen
It was at a time of great increase in knowledge about genetics. And so we had a really very exciting time as we were making medical diagnoses, which was mainly about the cause of the disability.
What excited me about it was the variety of things that we were discovering.
Gillian Turner, who was a great geneticist, had discovered – she and other people – had discovered the most frequent genetic cause, Fragile X Syndrome, and she asked me to help her do some research.
And I discovered that I liked doing research. Just to be able to concentrate on one thing set me off on a research mission, I suppose.
Well, the first one was with the Fragile X syndrome, and then I was involved in various things like the Prader-Willi syndrome, the Cornelia de Lange syndrome, and I began to write, with the help of others, things about those various syndromes.
But what began to worry me, Julian, was that many of these children were badly affected by other diseases as well, and we didn't have the chance to follow them up.
And it was about the time of the Universal Declaration of Human Rights. And I began to see that these were people that didn't have much access to any human rights, and particularly weren't really of much interest to doctors at that time. And they didn't have good access to medical care.
And that affected me. And I began to get really angry about that.
Julian
What would you say were the main underlying strengths of the medical model that you saw in practice?
Helen
I don't think there were many strengths at all, to be quite honest.
We were mostly involved with behaviour disorders and the psychologists then were treating the behaviour disorders. But very often there were physical things that could have been done about it.
I mean, just one quick example: there was a child, a boy with severe autism and very difficult behaviour. And he was going to school in a taxi. And the taxi driver became very afraid of him because he was being physically aggressive. So the taxi driver referred him to the police.
And the police came in. And at that stage, I think, you know, a thoroughgoing assessment was required with the medical people.
The thorough assessment discovered, and I’m ashamed to say, he had a very big dental abscess. He had been in frightful pain and there he is completely able to be fixed but not being attended to.
Julian
It's extraordinary, Helen, how so much of what you're saying still resonates with what's happening today, in that there are still so many gaps in health care for people with intellectual disability. And dental problems are often still overlooked.
I wonder if you could reflect on some of the weaknesses that you saw in those early days.
Helen
I suppose one of the weaknesses was lack of communication between the various elements of the health system.
I mean, the dentists really didn't talk to the doctors and the psychiatrists perhaps were not very involved. And people might be writing reports, but they were not picking up the telephone and talking to each other.
There was just a general lack of sharing.
Julian
It's extraordinary that that still continues to this day.
I wonder if you could tell us a little bit about how things changed over your career and what were some of the key changes in health care that you witnessed?
Helen
Well, I suppose people were being taken out of institutions and put into the community.
So, in the institutions they had had access to medical officers and nurses. But in the community, medical care was taken over by general practitioners.
Julian
So you saw that huge gap emerging as people moved out of the institutions.
Helen
Yes.
Julian
I wondered what you saw in the way of equipping of general practitioners to take on the role. Was there much support for general practitioners at that time?
Helen
Well, there wasn't any. And really, I don't know Julian, but I suspect there's not a lot of support for general practitioners now.
I mean, they're very overburdened and they have to have a quick consultation with a history, and they were involved with people who sometimes had no communication at all. So there was no time to talk to the parents or, you know, to communicate with the patient either.
Julian
Now, if you were to give advice to your younger self embarking on a journey like this – or to younger listeners, perhaps – what would that advice be?
Helen
Well, I think it would be to say, don't underestimate yourself and for goodness’ sake, have a go, because this is really needing to be done.
If you want to do a great deal of good and if you want to do something for universal human rights, this is the way to go.
Julian
So really, it's about the value of work to society and to people with intellectual and developmental disabilities.
Helen
Thanks. That's putting it well. Yes, exactly.
I hated having to give up my work when I went blind. I just adored what I did. And you're in contact with a very interesting section of medicine.
But the group of people that are the most impressive in my mind is the actual parents of people with developmental disability. I think most of them are absolute saints.
Julian
And Helen, you've just highlighted earlier in your response the important social determinants of health and wellbeing. From your work, how important do you think that area is to address, as opposed to perhaps specific health initiatives?
Helen
Well, I don't think that you can separate them. I think the whole thing has to come together.
But it also includes the organisation of care and the provision of community living so that people are accepted in the community and part of the general community, with access to everything that anybody else in the community has.
I’d been through public health – I got a master's degree in public health – so I was looking at all the social determinants of health and risk factors for disease. It's a wonderful discipline. You know, I could never have done the major bit of research I did with that medical disorders thing if I hadn't done that within the bosom of the public health people who supervised me and, you know, helped me with all of it.
Julian
And Helen, what would your top priorities be to improve the health and wellbeing of people with intellectual disability?
Helen
Well, I do think that you need interdisciplinary work. I think if somehow or other people could work in teams, and particularly with health promotion, to improve general nutrition and general fitness, as I did in the clinic that I ran at North Shore. I think that would be one of them.
Could I just add something to that? When I started with the first clinic that I ran at North Shore, I didn't have a social worker – I would have liked one – but I did have a dietician and a physiotherapist.
And I often thought that those two did a lot more good than I did. That would be the first thing that would make a difference to people. As we all know, it’s so obvious.
The person would get them out and walking, and getting them to play sport. You know, she used to get people in to do indoor cricket and indoor bowling and all sorts of things. And that was marvellous. They had such fun. They were people who had never been running since they'd been a child, and they were thrilled to bits, you know. It was action. Action makes a difference I think.
Julian
So those lifestyle related factors you see as absolutely critical to health and wellbeing. Sadly still under-addressed today, Helen.
Helen
Yes, I know and all the other things about communication and swallowing and so on that go with speech therapists. And now they're all, I think with NDIS, they're all working individually, aren't they. They're not working in connection with each other.
Julian
I wondered, could I ask you this question, because it's something we've discussed in the past: when you see people repeating research that you've done – for example in mortality – and showing the same thing, and that it hasn't changed from the time you did it to the time others have done it decades later. Do you have a thought or response to that?
Helen
A great feeling of disappointment. I mean, nearly all those things, mortality and morbidity, they’re just about unchanged, Julian, in spite of what you have done too, I’m afraid.
I don't know what has improved. I imagine that perhaps the social determinants of health might have improved a little bit.
Julian
It's better, yet the Disability Royal Commission has just handed down its final report in which it stated that people with cognitive disabilities, including of course people with intellectual disability, continue to experience systemic neglect in our health care system and I think that's an outrageous and untenable situation. They've made a lot of good recommendations.
And so if we look at that problem of lack of change or progress, lack of tangible change, what would you say should be done or could be done to really accelerate change or make a difference?
Helen
I wish I knew Julian. I'm sure you're just about to find out. You're living in a Centre of Excellence now, and it's up to you, Julian. On you go. [Laughs]
Julian
Thank you. No pressure, Helen. [Laughs]
Helen, having this conversation with you today has been an absolute privilege for me.
You've provided wise advice to me over time, and encouragement to me and so many colleagues over the years.
It's been an absolute privilege to talk to you about your journey in health care and your impact on the field.
So thank you so much.
Helen
You very much, Julian.
