Yeah, and it's having adults around who aren't fuckwits.
And a lot of people don't have that.
I'm back here again, I told myself I'd stay a while away.
Hi, welcome back and thank you for your support for the Miller vs. Berger podcast.
It's been great to see how many people have been listening and the terrific comments and feedback that we've received.
And it's exciting to be able to introduce this episode, which is something different now.
It was a conversation that I had with Sam Connor, people with disabilities advocate.
And as you will see, a terrific and eloquent person who feels very much from the heart
the plight of disabled people trying to find their way in a community that by and large wants to just get on with life with blinkers on.
So I hope you enjoy the conversation I had with Sam. Berger was travelling at the time that I talked to her.
And so what we did was I played the conversation back to him to get his response and comments,
which as always, I think, thoughtful, considered and get to the point in a way that many of us would like to be able to.
But really it's a uniquely Berger skill, I think, to summarise things and try to direct that anger that we feel,
that emotion that we feel about the injustice, the unfairness at times that faces people into something constructive
that can build a future, that can build a conversation and build a community that will effectively respond to people's needs at the time that they need it.
And that's where we start out in the conversation with Sam.
I hope you enjoy it as much as I did recording it and you'll no doubt enjoy the response of Berger. Here we go.
You are a pretty committed and almost involuntary disability advocate. Would that be a reasonable way of putting it?
Never heard it framed that way, but yes, absolutely, especially the involuntary bit.
Well, you can't help yourself, I don't think, can you?
Yeah, no. So when I was 11 years old, aside from me having a degenerative disability, I have limb girdle muscular dystrophy.
My best friend was shot in the back of the neck, went to live in an institution when he was 11.
And that was a very long time ago because I'm quite old. And so that's kind of informed my life and advocacy is about that sense of unfairness,
that people shouldn't be shut into institutions or treated differently or not being allowed in society, which of course is what's happening today.
What's your friend's first name?
Darren.
Darren. And is Darren still with us?
Yeah, yeah, absolutely. He's, although he's being very old, he's a year older than me almost to the day.
Darren is the chair of a disability service provider that provides services for people with spinal cord injuries.
We're still great friends. He's kind of like my big brother, much older brother.
And, you know, I wasn't a wheelchair user when we were little kids running around together.
He was 11 when he was shot and I became a wheelchair user when I was about 40.
And so I had this great peer. And so there was a great deal of country support for him at that time.
But of course it was all charity based and there wasn't really any services like the NDIS or any real services in 1979.
So, yeah, so it was a very different environment from what we have today.
Are you in touch with what your feelings were like as an 11-year-old to see this happen or a 10-year-old to see this happen to your friend?
Is that something that's etched in your mind as a long-term thing?
Yeah, it's quite different from how we think about disability now, I think.
You know, we had the Darren Westquest. Darren was a person who was surrounded by people who were doing good things and raising money for a TV forum and to try and keep them out of an institution.
There was also, you know, we had the telephone at the time where kids would ring up and give their pocket money to disabled and sick kids.
And it's quite tricky to, you know, when the disability and the sickness stuff isn't separated, you know, what does that look like?
You're giving your pocket money to people who you feel sorry for.
That kind of informed all of our thinking, that charity model.
And then now as an adult, I think very much more about the social model versus the medical model, you know, where the problem isn't so much with us as people who are disabled
because everyone gets disabled when they get older, right?
The problem is with society that doesn't actually have accessible buildings, accessible information, a world where we can all live, you know, equally.
And so my thinking around that's changed quite a lot.
So, Burj, I was going to ask you how that sort of vibes with your experience with remote medical services that we have this charity model,
which is a bit outmoded compared to what the government should just provide.
Yeah, I mean, charity is a way, you know, is a way of inducing people to pay tax in a way.
I mean, the one that always strikes me is the RFDS, the flying doctors, you know, people in Australia.
I mean, bless them. They're very civic minded and they want to do good things and do charity runs and stuff.
And they actually think they fund the RFDS, but they don't fund the RFDS.
They fund a very small part of the RFDS, the flying doctor service.
Most of it, because when it started, as Sam says, you know, this was a charity.
This was a charity organization and that's how services were delivered.
Going right back to the 19th century, and gradually we've seen a replacement of that charity with government provision, which is as it should be.
You know, most of the flying doctor service is funded by government contracts, in fact, to provide an air ambulance service.
So and yet people have the impression that it's all funded by charity and it isn't.
So, yeah, that that that gels very strongly with what I think.
And it's this I think that move away from charity, which itself is a it's a terribly disparaging term, actually, is is totally appropriate.
And the people actually have a right to provision for their diversity.
And that they don't have to depend on charity in inverted commas and they should not have to depend on sympathy because that is not dignified.
So I totally support what Sam's saying.
I think that's a really nice way of putting it, that that it's not a not a dignified way to provide people's needs.
So she goes on to talk about it a bit more.
That's one of the things that's really interested me about your advocacy is that I don't think there's been enough conversation around the problems with the expectation that charity is what's required.
It's passing strange that we have a charity drive to be fulfilling any of the needs of our relatively small population.
Absolutely.
And I remember that there's also that pity model, you know, where they push the idea that disability is a tragedy.
So the advertising even is all very much based on people feeling sorry for you.
So it has a societal effect as well about the attitudes of people towards disabled people.
There's also that false belief of people that there is a group of healthy people and a group of unhealthy people and the healthy people will remain healthy for the rest of their lives.
And the other problem with this whole pity slash charity approach to looking after what are perfectly predictable events that are going to happen to a large section of the population.
The other problem with it is that it can breed a bit of resentment amongst people where they feel that this is a cost rather than an investment or an ethical and natural justice part of living in a society.
And, you know, really when we look at things like the NDIS, which there was a great deal of opposition to, if you look at it in terms of economic rationalisation, we are a commodity as disabled people
because we're part of a chain of services and of, you know, we're the reason the workforce exists, you know.
So we have, we create work for disability support workers. We have huge return to GDP.
There's not really an understanding that, you know, disability is a normal and natural part of life as is care.
And when, you know, obviously we want everybody to be healthy and happy, but that also does involve care, you know, for everybody.
I was going to ask you what you thought about this resentment that is the flip side of the coin or another risk of raising money based on charity and pity.
Yeah, I mean, the thing that really strikes me working in medicine, both as a GP and as an emergency doctor, is that, as Sam says, you know, we are all a hair's breadth away from needing the care that we pity others for needing.
And this notion, as she says, that society is divided into healthy and unhealthy is complete nonsense.
And it's a kind of hell fascism. We get even closer than a hair's breadth away, don't we?
Because we think nothing of claiming our Medicare claim. Yeah, when we need it. Absolutely. If one of my breaks a leg or something like that.
Motorcycle accident. No one's saying there's someone kind of sponging off the government because they've had a motorcycle accident.
And it's interesting, like way back, way back in prehistory in the 1980s in in London when I was in medical school, we had in our sociology of medicine course, there was a lot about the perils of dividing the sick into the worthy sick and the
unworthy sick and the way that that reflected the prejudices of the person labeling that. And of course, in this case, you know, middle class white, not so much male, male, female, but middle class white kind of Protestant ethos.
And I think it still does. And I was talking about this with one of the residents in the emergency department only yesterday about the way that we we have this preconception of who is worthy sick and who is unworthy sick.
And it's very, you know, when you look at it like that, you realize how parochial that is what a parochial kind of view that is.
So I very much agree with what Sam's saying there. Thank you. It involves care for children, for example, who we don't see as disabled. We don't see babies as being, you know, but we have childcare and nobody resents us having putting money into childcare because people have children and then they might go off to work or whatever.
And so the care workforce is just a part of everyday life and it shouldn't be something to be resent resented. But when you look at that charity mindset and how that's turned around, there is a great deal of resentment and people have used it.
You know, like the Robojet stuff around poor people and disabled people and the NDIS being used as a narrative about how, you know, how people want gold plated wheelchairs and all this kind of thing.
But really it's just it's an investment in. Yeah, I'm boiling with outrage as I listen to this.
We get rid of the bridge between a disabled life and an ordinary life.
I appreciate your previously public stated view that there shouldn't be decisions about you without you.
And so I guess what I'm looking for for people like Berger and myself and others who feel strongly about these issues is what is the best way to be an ally?
What's your advice for people in our situation?
Well, I think, you know, for you and Berger are doing an outstanding job in raising awareness about not just COVID for example, but long COVID. But I guess also the I think maybe allies can extend it to thinking about the right for all people to be part of the world.
You know, so if I had to think of a hashtag for what that might look like, it would be we belong, you know. So we pay taxes, we belong in society.
We shouldn't have to stay home from the library or from the doctors or from the hospital or from the dentist or from wherever, because we don't we no longer belong in society because we do.
And that goes for your great grandma. That goes for a disabled child. You know, you belong in school as well.
So I think pushing that message of inclusion, inclusion and diversity have become dirty words, I think, lately, you know, they've been politicised.
I think that there's some doctors in the medical profession who are doing and representatives who are doing an outstanding job of being advocates and we're hugely grateful for that.
And I think other doctors perhaps need to be a little bit more informed because, you know, when it comes to us as people, you know, all we have is our trusted health professionals really to give us timely and good advice about COVID and what it might mean for us.
But that goes for the rest of the population too.
So do you think what our colleagues need is to perhaps just be a bit more informed?
I don't know. I mean, I mean, I guess the first thing to say is I feel really embarrassed how late I've come to any understanding of this.
And I was beginning to understand before the pandemic and when the pandemic started and, you know, I've come to a greater understanding.
I don't think it's a question of being informed. I think it's a cultural mindset.
One of the things that I've become very aware of in recent years is the sheer decision density and stress in a medical working day and how I'm talking here specifically of doctors and nurses too, but I'm obviously I know more about doctors.
And the way that we have to create strategies to survive.
And I think that the workload that we have all born for many years and accepted and welcomed and worn as a badge of pride, you know, as under the guise of in inverted commas professionalism has been very heavy and it remains very heavy.
And I think that armor that we create to survive as a doctor is a big part of the problem.
And that we don't have enough thinking time and we don't have enough compassion time.
And we don't have enough reflection time that actually we, you know, in some ways we're like a kind of military viewing patients as civilians, you know, military divides the world into the military and civilians, and we divide the world into us and us and patients.
And that distinction is as Sam says and it's so obviously false, but I think that's a big part of the problem that we don't to survive.
And it is very confronting and actually my son's in third year medicine at Monash and it's really interesting watching him dealing with the things that he is seeing every day on the wards and and trying to understand and trying to fit those in and and not carrying
it home too much and not being too upset and you realize that you do create an arm. I mean, I don't know what your feeling is Andrew, but certainly, you know, you just calm in a way.
You have to have an armor, and I think that does separate us from patients.
And, or, I think patients not.
That's what makes, just to say that's what makes doctors such sometimes such terrible patients and scared patients.
I don't know how to inform people to the degree that they need to change what they what they're doing because we have the medical board and AMC now saying that cultural safety training for a certain number of hours is important in an attempt to try and address some of these issues that have been brought up by consumers and others, quite rightly.
And adding another mandatory module is almost guaranteed to induce negativity amongst amongst medical practitioners because of the burnout already as you say and it's well known that there is literal compassion fatigue in that the more tired people are the less compassionate they are that has been measured many, many times and.
So, I think there's two elements to this one is you need to be in a mind in a state of mind where you can provide that compassion, but then you need to be informed as Sam says as to why you should be providing that compassion and why there is not a distinction between the worthy sick and the
unworthy sick, and her distinction between disability and sickness is really interesting and something she goes on to a bit more so we'll carry on. Yeah, I mean just to say that really requires calm and reflection, and that's, that's the difficult thing to provide.
Yeah, just to say that that that requires common reflection.
And to find that is so difficult. I mean I think it's, you know, it's critically important.
If this is ever to change but as you say like another another module is bullshit, and we know that, and everybody's going to go, oh my god.
Everybody's going to go oh here's another module. And then the word will go around that, oh, it doesn't matter you can figure out how to answer the questions without doing the modules just click through and get to the quiz at the end.
That's how it works. That's how my.
And there'll be some who, who don't want to improve the way they relate to patients because their business is going fine just the way it is and they don't need to do anything to achieve their goals in life.
And there'll be others like yourself who are a lot more reflective about it.
But, but all we can do I suppose is outline them, outline the traps and hope that people don't fall into them more than they need to.
What does it mean if you get long covered? You know, if you've joined our ranks, the ranks of the disabled, what does it mean for your work life? What does it mean for you long term?
And I don't want to paint being disabled as a terrible thing, but being sick is, you know, you don't want to spend days and days in bed.
You don't want to have to stop going and being with your family. You don't want to have to rely on care and rely on family and feel like a burden occasionally.
You don't want to miss out on the life that you used to have and you don't want your life to change.
How's your anger level going when you consider people being chronically unwell with COVID and going to get medical help and being told that it's all in their mind and they need to kind of toughen up a bit?
Yeah, my anger level is pretty high on that. And also my embarrassment in how I have written off people in the past.
Because I don't understand what's happening. And therefore, if I don't understand what's happening, the presumption has always been and still is in medicine, that it therefore can't be real.
And everybody's mad, except me. So I completely understand what's happening.
And yeah, and I feel less angry, more desperate for people who must be ill and sick and feeling terrible and wanting help.
And then have this double tragedy of not being believed. And it's just that must just make you feel so desperate. I can't imagine it.
And there's nowhere that people know really where to turn in those circumstances.
Many times, I'm sure, plus the disease itself mitigates against the treatment. Having the energy to seek out a solution with a negative profession stacked up against you is a Sisyphean task.
Yeah.
So I do think a lot of people don't really understand what it's like.
What's been your experience with sickness and disability and how that's affecting people's access to health care at the moment with people with pre-existing problems that maybe make them more vulnerable in the time of a respiratory pandemic?
It's just very complicated. So for example, I have limb girdle, which involves a condition called rhabdomyolysis occasionally, which is where I might exert myself too much.
And then my urine changes colour and goes really dark. I have really achy muscles and my body aches a lot. You can get really sick from it.
So essentially, your muscles are breaking down and those byproducts are the things that are affecting?
It's like enzymes breaking down into your system. And so it means that I essentially go to bed and on occasion should go to hospital. That would be the sensible place for me to be.
I have limb girdle muscular dystrophy type 2I, which unfortunately is the type that affects your heart and lungs.
And so, although I'm reasonably healthy for a 55 year old, I'm also at risk more than other people are, like other people in my community.
And when you take it all the way back to the start of it, which is around disability, I need to have enough care so that I'm not exerting myself.
So I'm really lucky that I have an NDIS funded power device that fits onto my manual wheelchair.
But if I don't have a human body to assist me with some things, then I can get really sick.
And so that's why it's important that the disability systems work well so that I don't get sick and that I'm able to stay out of hospital and not use up the health system resources.
And you said that things like diversity and inclusion are almost becoming dirty words at the moment, partly because I think people see corporations then roll out relatively meaningless, kind of mindless responses to these things that don't really involve genuine changes in the culture as far as the people in these organisations.
I'll try to tease out, because there's no such thing as an organisation. There's only people that all commonly believe in an organisation.
And if you don't change the attitudes of the people, I think that's what causes the pushback.
But one thing people do that never seems to really go out of fashion is the concept of fairness.
And I think it's trying to recast these arguments in terms of, well, we will make all sorts of allowances for a footballer who's done their ACL and needs a wheelchair as a result in the short term.
And that might be a tragedy, depending on which team you're supporting at the time.
But we seem to need to remind our community a lot that fairness extends beyond the things that we can relate to that we regard as a virtuous kind of illness.
And this overlaps even in the things like people with mental health disability and mental health sickness as well.
In your experience of mentoring other people who are disabled and so on, how much extra burden is there in trying to get past the unfairness that they're seeing from other humans?
Oh, gosh. It's just enormous. And we have this culture of rugged individualism now.
Everybody seems to be pushing for that idea that we're not a community and we don't have a responsibility to each other.
But of course we do. Of course we do. And you think about fairness and you think about equality.
They're really two different things. So fairness is if you were delivering a lecture in an auditorium, if you had a heart attack in the middle of there, I wouldn't turn around and say,
I can't give you resuscitation because I'd have to give it to everybody else in the audience and that wouldn't be fair.
Because that would be equal, wouldn't it? So fairness is that you help people get what they need when they need it.
And that's what a fair and equitable society should look like. And people just don't really have that concept and understanding now because we're pushing this narrative of rugged individualism so hard that it's all about everyone for themselves.
There's people in the middle of the pandemic who are talking about, well, you'll be OK. Just wear a mask or just stay home.
And really there's not that understanding that we're talking about sickness for everybody. We're talking about some people dying. Yes, sure. Myself included.
But we're really talking about the whole community working in the way that it's worked for however many years.
We're talking about people being able to get the care that they need, you know, and doctors and nurses and disability care workers being able to go to work because they're not getting sick all the time.
We're talking about disabled kids being able to go to school. And we're talking about everybody being able to belong to the community and be part of the community.
And so I think the term is interdependence. And, you know, we are interdependent on each other. That's something that I really wish would change in community right now.
And instead we're having a kind of pastiche of John Wayne Wild West inflicted upon us.
Yeah, the rise of the rugged individual. Do you think that that's a generational thing? Do you think it will persist into the next generation who seem to have a growing anger around being cut out economically from the future and environmentally?
Yeah, hard to know. I feel a lot of I mean, you know, this was all supposed to be solved in the 1960s, wasn't it? The new generation was supposed to be all about fairness and inclusion and such like.
And, you know, there was a there was a lot of movement then we had, you know, in Britain, we had, you know, homosexuality.
The bill was legalized in 1968. You know, this was a there was a kind of social movement. But right now, the young people are angry with those boomers. So it failed, actually.
I mean, although, you know, in some ways, we've had progress overall, I think there's been a failure and I think that we are regressing at the moment to this kind of a pastiche of the John Wayne Wild West, as Pam said, rugged individualism, everybody, you know, kind of fighting for themselves and worth being defined by money and how well you can look after your immediate
family. I mean, it's very this kind of neoliberal post-statutory Reagan, and it's just got out of control. And everything shifted onto the individual. You do you, you know, we don't need to look after each other anymore.
Everybody for themselves, save yourselves, you know, do what you like, survive if you can type of ethos. And that's not natural for us as humans, actually. And it's, it's quite anti Australian. Australians are like that. Actually, there's a very strong,
strong, strong, strong Australian. Un Australian. Yeah, there you go. I mean, there's this very kind of civic mindedness in Australians. And, and, and the way that Australia and New Zealand dealt with the pandemic in the first year was amazing, really.
And, you know, I remember the rest of the country going, you know, go Melbourne, thanks very much for all you're doing for us. We really appreciate it. And, and that narrative evaporated in the second year. And I don't think any of this is accidental.
I don't think that that just was a natural phenomenon. I think there was a very strong intention to replace that narrative with this rugged individualism, you do you.
Yeah, as I say, that was intentional.
My point is, it's going to be very hard to erase Australia's need to see itself as as fair. And the idea of volunteerism is pretty strong. So when there's a bushfire, people will risk their lives for no money at all to try and save someone else's property and they get a taste of that
mentorship. But then there's this anti socialism kind of narrative that comes forward.
That sort of portrays people who have chronic needs as opposed to acute needs as being somehow weak or undeserving.
And so, I mean, it's remarkable to me coming
from Britain, very strong, I mean, coming from Britain. It was remarkable to me when I saw how the rural fire service worked and that you know the SES state emergency service all with volunteers and a lot in a lot of places the ambulance crews are all volunteers
here in in Broome a lot of there are a lot of volunteers alongside the paid ambulance techs and paramedics and coming from Britain, I mean, that was remarkable to me, because we don't really have anything like that.
And there is this very strong community mindedness this very strong fairness Aussies looking after Aussies and to see that replaced so quickly. I mean, it was shocking and rather frightening actually.
But people have limited capacity right and you must be even more limited if you're also dealing constantly with your own disability and sickness on top of that. So, what, what do you do to not burn out in the midst of all this, you know, my logical side says well, I'll be a better, you know, I'll be in a better position to advocate for people if I've
gone and had a nice nice Chinese meal somewhere and a glass of wine and not felt too guilty about it. It's that it's how do you strike that balance?
It's really hard. I think I'm incredibly fortunate that I'm surrounded by amazing people in the disability sector, you know, that they always say, you know, we want to help people to have an ordinary life.
And I know people living extraordinary lives everywhere. So, you know, so people, you know, surrounded by remarkable people who are just, you know, my lifeline to everything really.
I think that feeling guilty is something that, you know, we all do and it's a human thing and it's a healthy thing to do. And you're right. You need to take care of yourself so that you don't burn out.
And everywhere that you go, I mean, I remember a homeless guy who I was talking to on the street said to me one day, oh, look, I'm really glad that I'm not like you.
And I just went, oh, that just put me back into my place as a wheelchair user, you know, because he had his legs and and this is a guy who was, you know, really grotty, had been living on the streets for ages and was drunk and la la la.
And, you know, most people walking past would have had a really poor opinion of this man. And I just thought, gosh, there you go. I'm the worse off than, you know, this little bloke on the street.
I was actually quite cheered by it. And so from then on, I thought, you know, I've got a real problem with strangers pushing my wheelchair and, you know, just a bit of a dignity thing.
I'd much rather have a support worker or a family member. But I thought, oh, I'll let the homeless guys, if they want to, like push my wheelchair before I give them money, that's fine.
So to level up that power and balance. And it's actually been really good, you know, like I said to people, you know, would you mind, like I'm really lonely, would you mind coming out for a meal with me, you know, and just sitting outside in the beer garden and having a drink and a meal with a homeless person?
It's been lovely. So changing that whole idea about, you know, I think getting rid of that guilt is something that's hard.
Sorry, just explain that a bit more for me. You've gone out for a meal in the beer garden with some homeless people?
Quite often, yeah. It's really been lovely because...
Is there a typical response that you get from them when you make this invitation?
It's been... I think I've only ever been told to rack off once and that's fair, you know, you don't want to be picked up by strange women on the street.
Or maybe they'd just come back from the beer garden having lunch with somebody else.
Absolutely. But it's been really lovely that, you know, you get to meet with people on a human level. Quite often if you're walking back from the pub or a club or something, you'll meet homeless people in the street where they're congregating and have a chat.
I think being disabled is quite a levelling thing where you're able to talk to people in community, share your drink, whatever.
But I really like the... I quite like mad people because I'm also mad.
But I quite like talking to people who have got interesting stories and these are disabled people.
Quite often they're people with brain injuries, they're people with mental health conditions.
You usually don't end up homeless for no reason at all. And people with AOD, with drug and alcohol addictions.
So it's really interesting for me. Like I feel like I'm being given a gift by people, you know, I might be buying them a meal but I'm getting a gift from those people like learning about their stories and where they've come from and it helps me understand advocacy and how to understand how to be a better advocate.
So yeah, it's really a give and take thing.
I've been doing it all wrong because my guilty pleasure is if I'm travelling, going and having a meal on my own and having no other conversation.
But I think I might try that as a way of learning something from people because I don't network very well with peers.
I'm uncomfortable in those kind of social situations attached to conferences and that kind of thing which I find, you know, you get it.
It's a bit like being at a wedding, you get a chance to have 100 superficial conversations.
But learning from colourful characters is something I can imagine would be much more interesting.
And it's a hard thing to do I think, you know, because you're a white guy who normally wears a suit, right, and I'm a disabled person who they're looking down on quite often.
So it would be a more difficult thing to do. So I've got a privilege in a way that I'm a wheelchair user and that I can relate to people on a different level as well.
But I think it is, like if you're ever talking to poor people, to anybody who comes from a different part of society, you know, refugees, people who have come from war-torn countries,
you always, you know, when you connect with people on a personal level, you usually have to give a bit of yourself as well, you know, and I'm very open and ADHD and talk a lot.
So, but giving of yourself means that people give back. And so I think doctors quite often do that very well.
What do you think, Berger? Do you think your experiences of working in emergency departments has given you a different view of humanity?
Yeah, yeah, if you don't get a different view of humanity from working in emergency departments, you're really missing something, you're not very alive.
Yeah, it's so interesting what she says about how she can use her position to interact with people in a much less threatening way.
And it's difficult, you know, when you're coming, I don't want sympathy, but you know, you're a white middle-aged male, the classic power personality in our society, people do tend to clam up.
And so, I mean, quite often I'll just sit in the chair by the patient's bed sometimes just looking away from them.
And you can get a lot more by doing that. Yeah, I mean, it's really interesting what she's saying.
Yeah, and it is inspiring, isn't it?
Inspiring too.
I think I've learned something today, which is that when you said that I don't like strangers pushing my wheelchair, do you mean you don't like asking them to do so or you don't like it when people assume that you need that assistance?
Oh, a little bit of both. I mean, quite often they will come up and put their hands on your wheelchair and just push you, which is a bit like grabbing some woman's shoulders and helping her off the train, right?
You know, so it's really bridging your autonomy as, you know, bodily autonomy is just part of you.
That's really interesting.
So, yeah, absolutely.
That's what I assumed that you meant. And I must say, I'd never previously considered it, but the very idea that I would be in a wheelchair and suddenly someone would take it upon themselves to start pushing me in a particular direction, I really don't like that.
No, it's terrifying. And they don't know what to do as well.
So, you know, quite often they'll try and push your wheel off a train and your front casters will go into a hole and you get tipped out of that kind of thing.
So you just don't let people do it. But there's also, you know, it is quite an intimate thing if you're providing care to somebody and you're allowing them to assist you in some way.
You do see people struggling. There's no harm in saying, would you like a hand? If they say no, I'm fine. You just say, yeah, great, have a great day. It's easy.
And isn't that a metaphor in a way for where we're at with COVID where unless people are in the situation, they can't really understand what it's like.
And so one of the big frustrations that Berger and I have had has been infection control in these health care facilities, dropping all protections as if they're not required.
And that's sort of the subtext really is that this has all been a bit of a fuss about nothing and that, you know, and then when you raise the issue of excess deaths, it all becomes, well, you know, we still prefer to believe, despite the data, that those people are going to die anyway.
And then very rapidly will come the bit that they had pre-existing conditions anyway. But everyone does and everyone who dies has pre-existing conditions.
So all of this is nonsense that is just kind of, you know, these conscience swaging things so that we can divert back to the old rut that we were in with not preventing airborne disease without regard for an already marginalized, large sections of the community, the First Nations people and people with long term physical disorders.
So how well is the disability sector, the consumer part of it, gelling together in terms of trying to fight these things?
Because I know that you're, I think, on the board of people with disabilities. Is that what's your role there?
I am. So I'm the previous president and current vice president. Yes, it's our past president, Craig Wallace, has been locked down for three years and his brother, who has the same rare condition that he has is currently in ICU with COVID, which is hospital acquired.
There's really become a big division between people who are at risk and clinically vulnerable and people who are not. Funnily enough, some of the people who are very COVID conscious and aware of my fellow autistic people who understand science and aren't swayed by social norms.
How funny is that? And so we're used to wearing a mask metaphorically and now it's physically, not for everybody. It's not every autistic person, but a lot of autistic people are still masking, are still taking precautions, are still very aware of the science, still reading the science.
But there's really become a split between not just the disabled people who are clinically at risk, but the disabled people who have fought very hard to be part of the community and now don't want to relinquish that inclusion.
And so it has become a very fraught space, I guess, where people have earned hard won goals to be able to be part of the world and then being asked to give them up because they might be more at risk.
They just don't want to know. So it has been really, really tricky.
And how do you deal with the anger that people bring forward in these circumstances?
Because often this will bring out our stress behaviours and people get frustrated and angry with one another.
And I'm never sure how best to defuse those situations and try and keep the family together or is that a bit of an insoluble problem and one that will only come with time?
Well, I think so. I think remembering our humanity and shared humanity, I come from the country and you tend to find that we don't have those artificial divisions as much as other people do.
Because in the country you're kind of connecting with people on a different level. It's not quite as political.
And so I think just trying to understand people's perspective, really.
So I'm guilty of making fun of people who are anti-vaxxers and calling them cookers and all of this kind of thing.
The reality of that is that there's a bunch of very vulnerable and frightened people who have gone the other way,
who have seized on a bunch of misinformation and on junk science and have found communities, really.
You look at their communities and they have very solid communities. They have really good information channels, misinformation channels.
They connect with each other in the same way that we people who are at risk are connecting.
So I think really all this is about is people who are frightened, people who are in the middle of a crisis. It doesn't matter whether they're at risk people or people who don't think that they're at risk or think that there's other vast forces out there.
We're really all doing the same things and that's seeking connection and seeking honesty and solutions to the problems that we have in day to day life.
And there's got to be some middle ground in there. Without listening to each other, we're not going to find it.
If you take a humanitarian approach, you need to consider solutions only in consultation with the people who are mainly suffering from the problem.
Does it come at a net cost to you to be a mentor or do you find it something sustaining?
I know, I've been a youth leader for 30 years in the Scout movement and so I'm coming from a movement where so many people are Silverbacks and a bunch of old people generally run things and you try and get as many young people in as you can.
I find it fantastic having the opportunity to be a mentor to especially younger people.
It's sometimes difficult when people are at the beginning of learning something and you have to help them through things.
But I think it's been really joyous actually. Young Senator Steele John has been a person who is another disabled person who I was really lucky when he was a tender young 18 year old person who I made some space for him in a disabled person's event
to give a political speech and he just blew everybody away because he's a magnificent writer and people recognise this and he's built this movement in Western Australia in the disability community where people wanted to hear him speak and what he had to say.
And of course he was a disabled person before he was a politician but he's always been a politician. But it's been an absolute joy having a friendship with Jordan and being respected enough to be a person that he can bounce ideas off and back with Jordan as well.
That Jordan is a person who I'll bring up and say look what do you think about this because we have a really strong community and the disability community and we can bring up people and say look what do you think about this, what do you think about that because there's some really tricky issues that we do need to navigate.
There's kind of a lot of parallels in mentoring young doctors really in that isn't there?
Yeah there are. And it's, you know, it's terribly difficult isn't it because you never know if people are just nodding politely at the nonsense that's coming out of the older doctor's mouth but there certainly is some wisdom that you do accrue that you hope that you can pass on to people who are alive to it.
I think with a lot of this it's about really being alive and open to the concepts. I mean a lot of people, doctors, a lot of people will listen to this conversation that you had with Sam and that we're having now and will just say well what a load of fluff and nonsense, you know, there's nothing tangible there.
And so I think that is a big problem in that without a certain consciousness these can feel like very abstract concepts are not of direct relevance to the daily world.
And I think it's so important that some of this happens in school and schools can be such brutal places. But unless you can, people can really understand these concepts of interdependence and looking after each other and inclusion and dignity from a very young age,
and I think for a lot of people once they become adults it's just too late.
Yeah, I remember having a patient not too long ago who's a 18 year old fellow with cerebral palsy who told me that he'd just finished in a local high school.
And I said to him, well I'm glad you went to high school now rather than back in the 80s because the way I saw people who had a disability treated back then was completely lacking any sort of insight.
And he said, well you don't know what you're talking about, because it's just as bad now.
And he said, there's a few people who understand but I was brutally bullied the entire time I was at school.
And so I think there's still a bit of work to be done. You're right.
And that's what, yeah, very much, very much and that's what really gets me aggravated about this whole, you know, won't you think of the children, this stuff about, you know, the lockdowns and the mental health crisis that this has caused.
I mean, in fact, in reality, of course, there are children who suffered by not going to school but overall the data shows that school being out, not in session is associated with an improved mental health in children, which, you know, makes sense when you reflect on your own school experience
and you go well, you know, you think, how do people stratify at school, you've got some for whom it's, you know, there's a few who absolutely love it.
It's a blissful experience. They skip along. It's their thing. For most people, it's like, meh, okay, I can live with it.
And for another minority, it's absolute hell from start to finish.
And you think, well, you know, if school's not in session for a short while, the people who are living on cloud nine of bliss are not going to suddenly become suicidal.
Everybody else is just going to go meh. And the people, which they do when they're in school anyway, they go, yeah, okay, take it or leave it. I can survive.
And then the small minority of people for whom it is absolute hell, they go, thank God, I don't have to go to school today. So, you know, let's have a bit of reality about school, please.
And a bit of honesty.
Yeah. Really, these are all just different kind of colours of the same species, aren't they, these various discriminatory things that we see.
It's an othering and it's a, you know, it's a privileged thing. And it's whether you're old or you're from a different race or religion or gender or sexuality or level of ability or illness,
these things, I think, all come from the same place and need the same solutions in terms of the truth telling around, you know, we're a very well off community, both in terms of resource and in terms of intellect.
So we should be able to just look after people.
And the problem is never COVID, you know, the problem has always been discrimination, ableism, eugenics and, you know, and people, really.
And that's something we can change. People have got the opportunity to change the way that they look at those things and we have an opportunity to remember that everybody belongs in society.
And in terms of making people feel less uncomfortable when they encounter people in a wheelchair or someone with autism or ADHD, do you have any advice for people as to how to approach those situations?
Oh, such a chicken and egg thing, you know. The only thing that changes people's mind, in my experience, is proximity to us. So, of course, if we're kept away from the world, it means nobody ever gets a chance to learn, right?
If you work with a person with Down syndrome or a person with intellectual disability, a person who uses a wheelchair, you just have an understanding that people are different, the same as race, the same as clearness, the same as all kinds of differences, you know.
And so the solution is to have everyone in society and that's what we need to work on, you know, those attitudes of inclusion being accepting of diversity.
Making people visible. I'm always uncomfortable with the exploitative nature of reality television. I wonder if love on the spectrum, whether it's a good thing or bad, but I still have it in the problematic category for me at the moment.
It's in my hate category.
Oh, okay. I'm glad that my discomfort about it wasn't there. It's a little bit carnival-like for me.
Yeah, I think it's somebody did a voiceover about it and they put it over some generic love scene that had non-disabled actors and it was like, here is John. John, like Zeus, John is going to go and have a drink with Mary.
And I'm like, you know, that's just not the narrative you have when you're trying to pick someone up, right? So yeah, I also have that thing.
Is the problem there that it wasn't produced and edited and written by autistic people?
Bang on. You know, so we have this saying that we're quite often regarded as self-narrating zoo animals and it comes very much under that category for me, unfortunately.
If they had some autistic producers and, you know, if you had an all autistic directors and cast and people organising, I think it would be a very different production.
In general, if you're heading the direction of being fair to everybody, then it's not that hard.
And I think that there was there's lots of famous philosophers who said who have said that working out that the good thing to do is not that difficult.
It really is not. I love that.
It's pretty obvious to most. Thank you so much for your time and we'll keep on banging on about it.
Thank you so much to you and David for all the work that you've been doing and to the other advocate doctors we call you now.
I think she's a very eloquent and interesting person, isn't she?
Yeah. Oh, incredibly. Very much. Very much. I've just got such respect for her.
And, you know, I mean, I feel embarrassed, you know, because she said, you know, it's not about Covid.
It's about discrimination, ableism and eugenics.
And it always has been. And, you know, this kind of revelation that's latterly come to me, you know, it's just like I can tell everybody from that disability community must be just rolling their eyes and going, oh, my God, it took you long enough.
You know, it's and it's been in front of us all this time.
And it really took it really took for me.
It really took Covid to bring it to the fore.
And the thing that really did it for me was the New South Wales daily press conferences where they would read out the list of people who died with underlying conditions.
And I wrote an article about this in September 2021, which was in the Sydney Morning Herald before I decided I was never going to write to them again. But about this whole underlying conditions business and how it was othering these people and saying to everybody who was listening, it's OK.
They were sitting ducks anyway. This won't happen to you. It's all fine. And it devalued their lives. And it was nonsense as well.
So.
And that's when I really started to appreciate the significance of what was happening.
And then, of course, you reflect and you go, oh, my God, it's been like this since forever. And I've just been blissfully the reason we're not going along.
You know, oh, God, this is embarrassing.
The reason we don't make progress with chronic problems in providing health care is not because we can't and not because we don't understand the problem.
It's because we don't have the political leadership and implementation skills to do so.
Yes. Yes.
So to be very clear, these problems are not wicked in the sense that they're difficult to solve.
And I've always been impressed with the examples that you've given of human ingenuity during wartime.
Yeah.
I applied some of those and suddenly saw what we were capable of during the early part of the pandemic when it was clearly understood by those in charge that this was airborne and likely to spread very quickly
and clearly understood by those in charge in pre-vaccine era, the potential for mass death, which unfortunately was seen in some places.
However, the throttle sort of comes right off all of those protections before too long.
And we go back to this fallacy of a winner takes all where, of course, the world's pretty terrible even for the winner in those circumstances where that where that fallacies followed through.
And the reasons for why that remains popular and in place, I suppose, is something we can go through another time.
Yeah, I was just going to say, I mean, we've returned to flattening the curve.
We've returned to managing to capacity where, you know, we just we just twist the throttle according to whether the hospitals are going to be flooded.
And that's what this business about ratcheting up mitigations and reducing them with community level is about.
And the most grotesque example of that was in the early part of the pandemic in the winter of 2020 to 21.
The Swiss were literally in fact, they've deleted most of the tweets now, but there's still evidence out there.
The cantonal that like the county authorities in Switzerland were calibrating opening of the ski lifts to ICU occupancy in their district hospitals.
So when the ICU occupancy went up, they would close the ski lifts.
And literally, you know, it's this whole managing to capacity.
And we're back to that now. You know, as long as there aren't there isn't mass death in the streets, it's OK.
And we'll go back to pretending it's normal.
But we've got hospitals now where people with cancer who are having chemotherapy go in and and they're at huge risk and there's no protection for them.
And it's it's a disgrace.
Yes, there can be some some pushback in those regards, though, if we give people information and if we give them the tools to, for example, talk about the patient's charter of rights to safety.
And if we lawyer up in certain circumstances, so that's I think a good a good subject for another day.
But reflecting on what Sam had to say, isn't she an impressive and eloquent individual?
Not surprised that she has, despite her circumstances, been a great advocate for people with disability.
Yeah, and very unbitter and inspiration.
Yeah, yeah. Unbitter, I would say.
Well, yeah, you know, I'm pretty bitter and I'm you know, I haven't had to live with with with this, but I'm on the able bodied side, you know, and and I haven't had to live with being I think I'm having my dignity.
And so I'm really impressed with with her attitude.
Does not some of your does not some of your bitterness come from your embarrassment that it is your peers to a large degree who are in charge and your peers to a large degree who are being callous.
I think it probably does. It probably does. It makes me really angry, actually.
And the last time the last time I was, I kind of work in bursts of several months at a time and the last time I was doing it at the end of it, I was just like, I got to get out, you know, because this is just really annoying me.
I mean, I remember being in a recess, and I was wearing an N95 the anesthetist was wearing an N95. Nobody else was wearing an N95.
It's like this patient, if they survive, does not need to contract an illness from us, you know, and it's just like, I've got to get out of here.
So, yeah.
Yeah, and I think that it's important to be sustainable and Sam, Sam touched on that a bit too is that, you know, we can't burn ourselves out in the process or we're we're no good to anyone, but we'll continue to be angrily podcasting these kind of ideas and thanks for tuning into this particular edition.
Thanks for your incredible efforts, Andrew. We really appreciate it.
I finished lemonade.
I'm back here again. I told myself I'd stay a while away.
Solutions ahead, but don't carry on. Blinded by nothing, we'll wait through it all.
Oh, so dark.
Oh,
so far below.
Where do I go when the signs aren't so bright and weighed down by feeling I don't have much time. It's okay. I suppose. Let's just hope that it goes. No need to stress over a failure to cope.
I'll take my anguish and go.
Oh,
so far below.
I know, you know, I see right through. You try your best. Fucked it through. It's all the same.
It's all the same.
It's wasted.
The leaves grow in the spring.
We grow taller.