Thinking outside the box: The Zone transcript

Michael Short: Adam Steinberg, welcome to The Zone and thank you for your time. You have been doing work in community medicine, and you have a particular interest in indigenous health. There is a persistent and wide gap between the health outcomes of indigenous Australians and the rest of the community. Before we look at some of your ideas, which are based on your experience in the north of Australia and elsewhere can we please start by scoping the problem? What are the facts, figures and indicators of the gap in health?

Adam Steinberg: The bottom line is that an indigenous Australian lives 25 years less than a non-indigenous Australian. For every dollar the Australian government spends on non-indigenous health, it spends $1.47 on indigenous health. And this cost goes up with chronic disease and remoteness. That is a glaring insight into the problems we're facing.

MS: So money has not been the solution.

AS: No, certainly not.

MS: Can you go on please with some of the other facts and figures. There is that life-expectancy bottom line, which is actually tragic. In terms of illnesses and frequencies and occurrences of illness, can you drill into that a little?

AS: Indigenous Australia experiences some of the highest incidences of chronic disease we see in Australia. Per capita there are more people on dialysis with chronic kidney disease and type II diabetes. And all the sexually transmitted infections are the highest in the world in the Northern Territory.

MS: Cardiac health?

AS: Cardiac health relates back to type II diabetes. All the cardiovascular diseases are a product of that.

MS: Okay, so there is clearly a problem and we all know about and it has caused a lot of people a lot of thought and heartache over a long period. You lived and worked in Darwin, Adam. You experienced a number of things up there. Can you talk a little bit about your time there and what you saw?

AS: I only spent one year in Darwin and there are plenty of people who have been there for decades thinking about the same problems. In my short time there I realised that hospital medicine is just a band-aid solution to all the problems we're facing with the health of indigenous Australians.

When you have to come from Melbourne where you are all about best practices you realise that it is not about best practice in the territory, it is really about what is the best thing you can do about understanding your patient in their context and trying to do the best you can for their given settings.

Again, the hospital is just really the last resort for a lot of these problems and something that became bleedingly obvious to me is the fact that we need a more community-based approach to indigenous health problems. How do you start to worry about health when you do not have education opportunities and why would you bother about education opportunities when there are no employment opportunities?

And why is employment important when no one you know has a job? And why is that important in terms of your personal history and heritage and identity and community when all of that traditional song and dance and the way communities used to live is completely fazed by issues of violence and alcohol and smoking.

All of those things link back into the health problems; health is a product of so many other different elements of the community's overall health and that became really obvious to me after just spending a relatively short time in Darwin.

MS: When we had lunch a moment ago, there was some interesting stuff that came out for me about the context of Jewish heritage and vulnerability and some parallels, if you will, between that and the situation we are talking about in terms of indigenous health. Can you please explore that a little bit?

AS: We were talking about why is a young Jewish Australian having this interest. Where did it come from? I think it came from my high school, Mount Scopus, where a strong spirit of activism and participation was engendered.

And it's really about how you look back in terms of the historical context. For me personally, your history needs to inform your values and therefore your actions and if you look at the Jewish narrative, from the Passover story in Egypt to the holocaust in Eastern Europe, there is a strong message there about looking out for the other, speaking out for the vulnerable, speaking truth to power and really from that comes an interest in respecting the vulnerable and helping empower the vulnerable to take control of their own livelihood.

The comparison is what you do with that vulnerability. Do you let that vulnerability dictate every aspect of your life? Is it something that is disenfranchising? Is it something that prevents you from engaging, or is it something that you then use as and empowering tool?

You can say that because we were persecuted or because we have had trauma as a people over many generations, how do we respond to that and should we respond to it by taking some accountability and developing that we want to see in the world.

MS: I will jump ahead, because I think what you have said about that is interesting and leads to something we were going to talk about later. And that is, what should the role of personal responsibility be in changing this situation, which is a national blot, and, associated with that, what should be the role of parental responsibility in health and education? And let's extend it also to community responsibility. So, individual, parental and community responsibility - can you talk about those a bit please?

AS: When we were talking about the figures before, there is no doubt there have been resources devoted to this problem, but why is there not progress? I speak about a meaningful space where people who are involved in creating an opportunity for change and allowing for an engagement and collaboration with aboriginal society about how to progress this issue.

Too many of the previous models and programs have been coming from the south-east coast of Australia and not really coming from where the problems lie and who the problems really relate to. I think the way to move forward is to create a space where there are resources and an ability to incubate new ideas and innovative thinking about problems, but it needs to come from an aboriginal voice.

And I think taking that step in personal responsibility and family and parental responsibility and community responsibility really comes from who is experiencing the detriments of these problems.

That is what I call the meaningful space - where we allow for it to be explored and we allow ideas to be circulated, but someone steps into that space and says this is my idea, this is my voice, this is what I want.

MS: So who is that someone?

AS: That someone needs to come from the indigenous world. There is no doubt there are voices, but how do we allow those voices to really step forward and come to fruition? In terms of those issues of parental responsibility, it is tricky.

How do you tell parents how to parent? How do you, when the aboriginal context of parenthood is, I guess, a bit laissez-faire, where it is really about allowing your child to experience the world and engage with it. But then how do you integrate that area of western sensibilities about mentorship and instruction and direction and guidance? Where is the meeting ground? And that is the meaningful space.

MS: And isn't a cross-cultural parental responsibility protection? And isn't it the case that if you look at some key things like sexual abuse, malnutrition, ill-health, that it is hard to avoid a conclusion that many indigenous parents are not fulfilling their responsibility at that fundamental, non-cultural level of protecting their children?

AS: It is an immensely challenging area of this discussion. At what point do you and can you break this cycle? And it is not about blame.

MS: No, it is not about blame. Is that not simply an inescapable observation?

AS: You would have to say so, but after spending time with this community, it is not as straightforward as saying the parents are at fault. It's really a much bigger problem or context, where there are a lot more factors at play. And I agree that somebody needs to take responsibility, and maybe the parents do, but it is tricky and we need to be looking further and constructing the discussion in a productive way.

MS: No, because there are reasons why the parents have been unable to fulfil that role, and so you need to look at those. So there is an intergenerational issue.

AS: And this parenting style worked for centuries before there was an indigenous health problem, so it is not straightforward.

MS: Yes, very complex indeed. So we can only deal with what is and what might be, rather than what has passed. So, you talk about a meaningful space within which solutions can be created and responsibility assumed. What does that look like? How would that work?

AS: I can use some personal anecdotes to perhaps illustrate this. When I first arrived in Darwin, I started looking after a patient who was an elder of a community in the Northern Territory. She had been in hospital already for three months, bedridden and very unwell.

And really I took over her care at a point where she was kind of stabilising - not quite on an upward path but at that point where she was really ready to consolidate her care. She had spent three months inside the wards of Royal Darwin Hospital and had not been outside. I said to my team, you know what, let's take this lady outside.

These are people who spend most of their time in the outdoors, so let's take her outside and just have a conversation with her. So I took this patient on her bed with my team and we sat down outside on the lawn of the hospital and just had a conversation. And really what happened, because of that single act, was it opened up a whole dialogue about her, her community setting and the issues they were facing.

And that very small act created a meaningful space in which we could actually engage meaningfully with the issues at hand. And whilst this is just one small example of it, imagine if we could do that on a national scale.

MS: What happened then with her?

AS: Slowly after this discussion I learnt so much more about her community and her circumstances. Tragically her two sons were both in jail after feuding with each other as a result of alcohol and community violence. She spoke about how her community has really lost its identity in terms of the way it works with culture, and how most of the community now identify more with African American culture and ghetto culture from the States, which is, I guess, slightly tragic.

We talk about patients that have the ability to have an escort who comes from the community to spend time with the patient in hospital. And I asked her why she did not have an escort. She said if I brought an escort, they wouldn't be with me they would be in town drinking. It gave me an insight into the workings of her community and the problems it was facing.

And from there, the trust that was built between the patient and me was just immeasurable, and it really changed the way she interacted with the system and the problems.

I finished that placement before she left hospital and returned to her community but when my team would go to the community she would always send regards and I found it quite symbolic in my final week in Darwin that she was calling my name and I could not even recognise her because she had just returned to such vitality and health in the community.

And the fact that just that small relationship actually started a process of health and rebuilding and rejuvenation for her in her community setting I think is symbolic of what can possibly be achieved.

MS: And, on the other hand, you told me an anecdote about a young man with great talent and a health problem and that did not and so well. In fact, it ended terribly.

AS: The story is about a teenager who unfortunately had kidney disease due to a genetic condition and was on dialysis from a very early age. He came from West Arnhem Land and was transferred to Darwin Hospital for his treatment and really had to stay in Darwin for his care.

And that geographic situation, almost a second dispossession really, does play into the mentality of what health is. And this kid did not come to dialysis and used to then turn up to the emergency department short of breath, really gasping for life.

It happened three times a week, and the system just isn't geared up for that. The people in the emergency department did not understand where this kid was coming from and were saying oh this kid is here again. And the dialysis unit was saying what is happening with this kid. And no one had really ever spoken to him on an individual level.

At one point when he was in hospital for a few days I said to my team let's take this kid out and go and kick the football with him and throw the frisbee and try to connect with him on a personal level. He did not open up, he did not tell us what was going on, but at least he could see that at least we were on the same page in terms of trying to look after him.

And his attendance improved, not amazingly, but enough that his emergency department presentations were reduced. And, again, just creating that personal relationship really spoke volumes in terms of how he engaged with the system.

Unfortunately, he wanted to go to a festival at home in his community and while he was there he missed a dialysis and then there was a discussion about whether he wanted to come back to Darwin for treatment and he decided he just wanted to stay there and finish up.

And I was really moved to hear that he actually tried to get in touch with me through the hospital at that stage to see what could be done. And again, that relationship building is really key to advancing solutions to this problem.

MS: Okay, you have established firmly, and a lot of people share this view, that the solution can not be imposed from the outside. We have talked about education and employment; there is this broader cultural element to it. And so it is very complex and difficult. To the extent that some people think that the problems are intractable, do you think that is defeatist or do you think that is just realistic?

AS: I think it is defeatist. I would not be sitting here today with you if I thought that was the case. There is Einstein quote about using the same type of thinking that created the problem to solve it is never going to work, and I think that is definitely true.

None of the programs under the systems in place have done anything for the problem in the last 25 years or more. We need to start to look at completely radical new systems to really start to deal with this. It can't be in the constructs of what exists. Collaboration is at the forefront, and need to have some new ideas.

MS: Well, the cornerstone you have mentioned of collaboration, ownership. Financial resources doesn't seem to be the problem when you look at the amount of money out there. So it is perhaps a question of perhaps reallocating some of those resources, and you are talking about innovative solutions. Are you aware of any potential ones, given that you have worked elsewhere in the world with developing countries where there is a wide disparity of wealth and resources? What might be some of these innovative solutions?

AS: I have to preface this by saying I am hesitant about saying what are these innovations when we need to speak to the initial problem of lack of collaboration.

MS: It is an absolutely important point and is taken and recognised. So, having made that caveat, what sort of things have you seen that might suggest something that could happen?

AS: From this interest in indigenous health, I started to explore the developing world and I managed to travel to Ethiopia with the organisation I am working with, which is now called the Joint Distribution Committee, and I got to see different projects at first hand.

When I was in Ethiopia the American doctor who had been based in Addis Ababa gave a presentation where he showed various developing world health problems afflicting Ethiopian children. He would put a slide up and ask the audience what the ailment was and each time he was shocked that I could recognise the condition. He couldn't believe that in Australia, a well resourced, developed country could still have medical conditions you could find in Ethiopia and the developing world.

Then I spent some time in northern Ghana, where people are trying to work on these issues.

I have spent a significant amount of time in Israel as well. From all of the settings you can definitely start to borrow and share ideas that can really start to build community, because that is what the essence of what we need to be doing - community building. It means simple things like vocational training.

We have spoken extensively about Bunker Roy and the Barefoot College, where the education paradigm needs to shift away from numeracy and literacy to something a bit more practical and pragmatic. That is complex, because we know how important numeracy and literacy are in advancing economic opportunity.

But micro-finance projects, for example, for women can be crucial. Women are very important to this, because when you change the life of a woman you change the life of her family and then her community. In Ethiopia the JDC really focuses on micro-finance, scholarship and vocational training of women in all different settings of the country.

That target group can really start to change the dynamic and the fabric of a community. That extends to Ghana, where it is a huge focus of the development work. The lesson from the Israeli model is things like different notions of what communal living is.

We know that indigenous Australians are a land-focused community, but it might need to have a different context to, say, a kibbutz. The kibbutz is a part of a society where all your education, health, shelter, food and basic needs are really looked after by the community, but to be part of that community you have got to contribute in some way.

And I just imagine that if instead of using all the Centrelink payments and land-rights payments to just give credit to people's cards, if we invested into the community in that way and really gave people a sense that if you do this for one person somebody else's go to do something for you and we can really look after each other in that way.

This includes things like kitchen gardens - the concept that learning about foods that are healthy in terms of changing diets and how you perceive health in that way can be very useful. There is a lot we can do in terms of that focus.

There are lots of ideas and models that are used, but the challenge will be then how to transport them to an indigenous setting and how to get our indigenous communities to start thinking along those lines. And that is really the key. We can all come up with various ideas, but some thing needs to germinate from the community itself about the problems they are experiencing.

MS: That makes me think about the distinction and important difference between prevention and cure - diet being a very important part of prevention. And it is very much linked to education and empowerment. Why is the diet so bad up there within the indigenous community, and it clearly is because it has been recorded as such and is clearly contributing to these chronic health issues?

AS: You can see this across a lot of different places in the world, where you have people who have a very land-based diet. You have an external culture imposing in a very short amount of time, and our bodies' genetics cannot keep up with that and we really get this transforming experience where there is an exponential rate of diabetes and all the consequences of that very quickly.

That is a big irony of this, as well - western society came to the indigenous world and brought with it Coca-Cola and chips and things like that and now we're trying to revert some of the damage we caused. I think it is part of the great irony with this. In terms of talking about preventative health and community health, and about models - I have said that I think hospitals are a band aid.

We need to have another look at this system of hospitals as just a curative measure. We should not be seeing them as just curative. We should see the way you access health as being much more centred in the community in a prevention-based model. Trying to keep people out of that hospital system is really crucial.

MS: Yes, it is almost too late by the time you get the hospital, isn't it?

AS: Yes, it is a patchwork.

MS: Congratulations Adam; you were recently awarded the Ralph Goldman Fellowship in International Jewish Service, which involved a whole lot of interviewing and applying and travelling to New York. And so it was a great thing to win. Can you talk a little bit about that please in the context of this issue, and how you are going to use that experience to help inform?

AS: The Ralph Goldman Fellowship is in international community service, run by the Joint Distribution Committee. The JDC is the world's biggest Jewish humanitarian organisation. They work in more than 70 countries in the world, really on a grassroots level in community development, but also segueing into other things like disaster relief and international development.

And I guess my journey from Darwin to Ethiopia last year really showed me that there is a whole lot out there in terms of community development. And for me the fellowship was just a wonderful opportunity to engage with community development in a whole range of settings.

Even if we find one idea that is transportable back to an indigenous setting, it would be setting the discussion for a better direction. I'm about to move to St Petersburg for five months to work in the Jewish community there, and then hopefully some more time in Eastern Europe. I am looking for some of the core ingredients that make community building a success in those settings.

I really want to look at the trends in community identity in those places. Obviously it is not the same problem and it is a completely different context, but what are the essential ingredients we can really try to make a difference with.

MS: What is your personal story? How come you're doing this work? What motivates you, Adam, and why?

AS: We spoke about it a bit earlier in terms of your growth within your family and your school and your community, and how that really engenders what you're about. I am first-generation Australian, and I do not feel any personal responsibility for the indigenous health problem like I think some Australians do.

But I think about that spirit of participation in problems, that activism, understanding what it means to be a vulnerable person in society - and how that when you are no longer in that position what that means for how you treat others. And I guess that is something inherent in being a doctor.

It is about taking care of others, people who can not advocate for themselves, the people who cannot care for themselves. Family story is important. My grandparents survived the Second World War, and you cannot escape that in terms of what you do.

In high school we spoke very little about Australian history and indigenous narrative was almost non-existent in that, and I think giving power to that voice is really important in terms of what we're doing. And I think it is inherent in being an active Jew and a young doctor.

MS: Yes, your grandparents survived the holocaust. Your parents met in Cape Town. Your father's parents had felt vulnerable under Mugabe, as that regime commenced. There are some interesting threads here, aren't there, with vulnerable, almost dispossessed Jewish people coming to Australia. And your father was also a doctor. So there is a nurture balance over nature there, isn't there? Where do you want to be in 10 years? And do you think things will have changed for indigenous health in 10 years?

AS: I think in 10 years time I have a little bit of hope that with conversations like the one we're having today that we can kind of change the context of the discussions we have been having about indigenous health. These are things you cannot measure in moments, they are measured over time.

You have got to give this some time and put in some significant steps to make meaningful change and see where it all leads. I am not all that hopeful, but there is part of me that wills it to happen. I think in 10 years time, personally I hope I would have finished my training in internal medicine and that I am engaged in a whole facet of things that will help these issues.

I would like to have a hospital position influencing medical students and the development of junior doctors, where you're really teaching them what it means to be compassionate and what it means to recognise the other, understanding what it is to be a patient in a system that sometimes doesn't make a lot of sense for them.

And that community of care for each other I think is really important. If we create a generation of really compassionate doctors we are really going to change the landscape of what it means to access health.

Similarly in a way that I think that the junior doctors who worked with me and were able to take the patient on her bed on the lawn and take the other patient to throw a frisbee is really formative in their development. And if those doctors then share that with other doctors we can really change things.

MS: You're talking about leadership by example.

AS: Exactly. And then segmenting that in terms of public health and public policy and working with indigenous leaders on the same issues. And I would like to see the Jewish community intimately involved in the way they engage with external issues. That is really important as well, and I would like to engage with that, and help weave a modern identity.

MS: We are almost out of time, so I will ask you the final question, which is a difficult question and it is about the hardest thing you have ever had to do - that you feel capable of talking about here. What is the hardest thing you have ever had to do, Adam?

AS: Part of me feels like there is no such thing as hard things, there are just hard people. Sometimes it's not so much a matter what you're doing - it's who you are as a person and how you rise to those challenges. But some simple things spring to mind in terms of hard.

I was almost 100kg when I started year 12 and I had no idea how big I was or what that meant for my health until my mum very cleverly said to me 'you know, Adam, you are in year 12 now and it would be a good idea to balance your school work out with looking after yourself. Why don't we go to the gym twice a week?'

I went to the gym and the guy at the gym said 'Adam you are a big guy, you have got to do something about it'. I had no idea of that paradigm. And then the work to lose 25kg in your final year of high school while you're working full time I think was an achievement. And professionally there have been a lot of times in a hospital setting that have been very challenging.

Darwin, in particular, is a very different hospital setting compared to the metropolitan settings. And I found it very difficult to negotiate, but I guess you're always learning. But again, there's nothing inherently hard about the situation, it's how you respond to it.

MS: I thank you very much again for your time. I wish you very well. I hope you continue to contribute ideas, and I wish you well and warmth in St Petersburg over winter. Thank you Adam.

AS: Thank you Michael.

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