18 Mar 2017

Minnie Baragwanath - the battle for accessible healthcare

From Saturday Morning, 11:05 am on 18 March 2017

Minnie Baragwanath has played a leading role in effecting social change for New Zealanders with disabilities.

Minnie Baragwanath

Minnie Baragwanath Photo: Supplied

With roles that have included working in the media and community and policy development in local government. Legally blind, nearlyyBaragnearlymissed the most important letter of her life in August 2015 because of her visual impairment, stating that she was due for a mammogram. Finally diagnosed with breast cancer, she underwent a mastectomy and reconstruction and a host of complications.

Minnie Baragwanath

Currently the CEO of Be. Accessible, Baragwanath has received a Sir Peter Blake leadership award in NZ, has been a finalist in the Women of Influence awards in NZ, a recipient of the NZ Order of Merit and is one of ten finalists in the New Zealander of the Year Awards.

She'll be speaking at the inaugural Global Summit on Accessibility that will be held in Auckland, September 2017.

Read a full transcript of the interview:

Kim: In 2011, Minnie Baragwanath founded and became CEO of an organisation called Be. Accessible.

She’s been on a mission to make New Zealand the most accessible country in the world for people with a disability.

She won government funding for that aspiration  - she was the disability programme advisor at what was then the Auckland City Council; she’s received many awards for her work which has been informed by her condition of being legally blind.

Since 2015 she has, per force, been informed further as a consequence of a breast cancer diagnosis that she received then; more lemons turned into lemonade by Minnie Baragwanath – you do have a habit of doing this?!

Minnie: Laughs

K: What happened?

M: Do you know what happened actually is that I turned 45 which I wouldn’t normally say on the radio, or to anyone, but in this fabulous country of ours, you – with our health system – you then receive a letter inviting you to have a mammogram and so the letter arrived but I didn’t realise that’s what the letter said because of my sight.  But I took it into work and my lovely assistant Chris read it and said “Minnie we’ve got to book you in for a mammogram”. And I was like “Oh, ok, we’ll get round to that” but she was very insistent – thankfully – and she went ahead and set up the booking and it all sort of went from there, really.

K: And it was diagnosed, and you had a mastectomy, and you had a reconstruction – which sounds relatively simply but I don’t think it was…

M: no, it wasn’t simple. So there’s probably two aspects this – I guess one is the fact that I just didn’t realise – you know, I think anything like cancer or any health condition, it’s a very individual experience – if anyone talks to me about a bell curve again and the fact I seem to sit outside it, I might scream! I’m just wondering if there really is a bell curve for anybody because we are so individual.  But alongside that, what was incredible and incredibly confronting, was the fact that as I am partially blind, and one of the things that means is that I can’t read the printed word, that I can’t see it …

K: You’ve got peripheral vision but no central vision …

M: that’s right. And peripheral vision means I can sort of walk around and people generally don’t know I can’t see, which has its pluses and its minuses, but actually when it comes to the printed word, to the written word, signage, people’s faces, then I really struggle.  And of course, the entire health system is built around sending out letters in size 10 or 11 font to people and the assumption is that we can all read them.

K: what’s the alternative?

M: well I think we live in an electronic age, and to actually find out people’s preferred form of communication so for me, if I had been emailed information  - I have a screen reader on  my computer, I have magnification – I can just listen to an email, it’s that simple, actually.

But what happened is that I received my diagnosis, and of course that’s a hugely shocking moment and then - and the doctors were all gorgeous and divine and lovely – I was handed an enormous pack of information … this was the cancer pack…

K: …all of which you had to read …

M: Right. I was told “read this information, go away, and make some really big decisions about how we’re going to approach this – do we do a reconstruction, if we do, what kind of reconstruction, here are the treatment options, etc. etc. etc.

So in order to be an informed patient it assumed I could read an incredible pile of inaccessible information and so that‘s when I started to realise that this was not only going to be challenging in terms of, well actually, I am now confronted with a potentially life-threatening condition; I don’t know that I can navigate the health system as a partially-blind woman, unless there are some other incredible support mechanisms put in place.

K: and you obviously got the support you needed –

M: I managed

K: because you are a determined person who is au fait with the things you have to do to get that

M: look I did but it came - it comes at a price, and I think that that’s the thing.  So you know I live alone – there isn’t a partner or this sort of immediate network of people in your home to be helping so you then are thinking about how do you put that network in place?  I mean, friends and family and colleagues and so on were just extraordinary – I mean I think you see the most divine aspects of human nature during these times.

What none of us could, I guess, have predicted though were the complications that happened alongside the cancer treatment which led to me having a major infection post-surgery, undiagnosed pneumonia and collapsed lungs, and then pulmonary embolism. And so I was in and out of hospital for weeks on end …

K: was this as a result of an infection?

M: it started with an infection post-surgery, that wasn’t picked up and I was sent home, and then I collapsed and was taken back to hospital. So then I needed to be treated for an infection and cancer.  A week later I was discharged, my lungs collapsed when I got home, I had pneumonia, it hadn’t been picked/diagnosed: rushed back to hospital …

K:  Is it a foolish question to ask you why these things hadn’t been diagnosed?

M: It is the question to ask, and that is something I’m still trying to understand actually.

K: Are investigations ongoing?

M: Investigations are ongoing.

K: Alright

M: And so what happened is that the layers of complexity just grew and grew and grew.  So it got to a point at one stage where I was having amazing support form district health nurses, who I just think are angels, but I was dealing with the results of huge surgery, massive scarring and healing that wasn’t going well because complications then compromised my healing, which then delayed my cancer treatment. And so there was this flow-on effect – a real multiplier if you like, and so what happened was, because it seems I don’t do things in an easy way …

K: No!

M: I seem to go to the extreme end (laughs) I was at one point dealing with about 20 health professionals and trying to communicate through a health system that is not set up for someone who is partially sighted.

K: Certainly a multiplier! Having said that though, I suspect it’s not easy for anyone to navigate the health system under those circumstances.

M: No, no. Incredibly complicated. So for me I guess, it meant that I was off work for 12 months, took me a long time to recover – I’m still slowly recovering actually, these things come… there’s a big physical and emotional cost. And I think that it really struck home to me is, in my work with Be., our whole focus is on the fact that we can create the most accessible country in the world. That 25 per cent of people live with some type of impairment right now. That’s huge. How can we front-foot this? How can we as New Zealanders, this socially responsible nation, actually start to think about solutions and opportunities, because what I realise through that Kim, is that people talk about the cost of making, say, things accessible. So imagine, what would it cost – and I don’t know the answer to this actually – to create a healthcare system where mammogram letters are sent to all NZders in a form that they can read? And you think about the diversity of our population – I don’t know what that cost would be.  But then, weigh that up against the cost of someone’s life, or multiple peoples’ lives, and the loss to society of that person, their contribution – it’s an equation I’m really interested in someone exploring, and it’ll probably be us that ends up exploring it.

So I get frustrated because I hear people often say – it’s too expensive to make things inclusive or accessible, and I say “Do you know what? We are already paying the price”. But we’re not talking about the cost of not being accessible. And that’s, I guess, where my passion now sits, is around, ok, we want to talk dollars, how do we turn this around, how do we start to look at the opportunity of getting this stuff right.

K: When you say 25 per cent of New Zealanders  …

M: it’s a massive number

K: What are you classing as a disability?

M: Yes, so this is from the NZ Census and it’s pretty consistent worldwide – so it could be someone  like myself who is partially blind, someone who has hearing loss, is deaf, someone with dyslexia, Asperger’s, autism, mental illness, and so we also have a rapidly aging global and local population  - by the time we’re 65, 50 per cent of us at least will have one impairment, and so what’s happening is that the global population is now also starting to impact on those baseline stats, so that’s why I think gosh, actually, as a nation, if we’re smart and we want to be ahead of the curve (laughs) not the bell curve, the other curve (laughs) – what if we decided to position ourselves as the innovators, the designers, the people who actually are coming up with solutions for an aging population and their access needs because all of us have access needs at different times in our lives.

K: But certainly the issue of the baby boomers is going to become pressing

M: Yep.

K: So what progress have you seen specifically since you set up Be. Accesible in 2011

M: So when we started, we were a group of people with an idea, and I have to really acknowledge Dame Tariana Turia because really, she understood the vision of what we’re doing and really got in behind us at that time when she was in Government. And so we had this idea that if we could come up with a social movement where we addressed the physical, social and the personal aspects of someone’s life simultaneously we could start to drive real change.

But we also recognised that disability, if you like, is always placed in the welfare camp – it’s never placed in the economic development or tourism, innovation or leadership camp. And why not?  So we saw an opportunity – strangely enough, it was such an unlikely pairing if you like, but it was around the Rugby World Cup to come up with a programme that started to talk to access tourism.

The reason we did that is because of the baby boomers. So, tourism is one of our fastest growing industries, it’s something people see as  important, engaging, people like to talk about tourism (laughs) – and we thought actually what if we could start to create an accessible tourism experience in New Zealand?

K: Has that happened?

M: It’s underway. So we’re working with organisations  - all the major airports, KiwiRail, InterIslander, we’re working with taxi companies, bus companies, amazing hotels, one of the two probably most outstanding hotels which have really taken; leadership are probably the CQ Hotel in Wellington and the Sudima chain, that has hotels throughout NZ. And each of these organisations, what they do is that they agree to have us come in and work with them, to help them understand what it means to be truly accessible to all their customers. And it is not about compliance: this is not about hitting people over the head, it’s about “ok guys, how can we start to look at your marketing, at your communication, at your customer service, at your employees?”  And what we’re finding is that a lot of these organisations started to look at their customers because they thought “what if we can attract the baby boomer, who we know travel more than any other group, have the highest discretionary spend, and also have the highest rates of impairment, and so if we can start to provide beautiful customer service to that group … it’s a marketing opportunity.

K: That’s quite pragmatic

M: It is very pragmatic.

K: I mean, you’re not arguing that it’s the right thing to do, it’s a socially-responsible thing to do, you’re saying there’s money in it.

M: There’s money in it, and we call that the yellow dollar, and the access economy. And so we’ve started to frame up some new language around this. And then what happened is that those businesses came to us  - these amazing NZ businesses, we’re working with hundreds of them across the country  - and none of them are doing it out of compliance, they choose to – we consult with them. They then said, “How do we now reflect our customer base through our employee base? We want to employ people with access needs as well?” And so we now have an amazing programme placing gorgeous young talented people with access needs, who might otherwise struggle to get employment, into these amazing businesses. And so we have these incredible case studies, these incredible examples, that actually people do care about accessibility; people do want to create an accessible country; and the next phase for Be., because one of the challenges is how do we resource new innovation? How do we ensure there is a constant flow of innovative solutions to create a more accessible world, because I don’t want the next person Kim, the next young person with breast cancer who’s blind, to go through what I went through. It’s a very powerful motivator for change! (laughs)     

And I think well, if others aren’t going to come up with solutions yet, because, they have other priorities, then we need to do that.  So we’re setting up something called the Be. Lab, and it’s going to be a centre for innovation, and we’re setting up a fund – we already had a start-up investment of $150,000 – love to have that matched –

K: Is that from the private sector or the Government?

M: That’s independently of both.. .but it’s going to be an innovation fund that people can apply to; we need to grow it to ensure there is a constant flow of innovative solutions – whether they’re technological solutions, whether they’re system solutions, whether they’re social change solutions, so that we’re not dependent on Government long-term.

When I say ‘we’ I don’t mean Be. I mean people with access needs and NZ Inc. if you like – and I want this to be a fund that in 20 years’ time is worth 50 million, 100 million – you know, you’ve got to think big! – a hundred million dollars; not to grow the fund for the fund’s sake but so we can resource innovation in this space.

K: You’ve talked about the letter not being accessible, so, the email, not everybody has that, technology on their computer. Bit further than that, what is it, what innovation, what system improvement, would you choose to make to improve your experience?

M: I would - I think it’s got to come from the top down. I think this is a leadership question – I would love, for example, to have a conversation with Lester Levy, and say ok, how can we ensure – and ok, I live in Auckland, I don’t mean to sound so Auckland-centric (laughs) – but that’s where my experience was – ok, what is your accessibility strategy as a health board, as a region, for ensuring that you are truly meeting the needs of the 25 per cent and growing number of Aucklanders with access needs. Let’s develop a strategy, and a plan.

K: You see I can’t help thinking that anything that improves in that sense would improve the system for everybody because it is not easy for the most able-bodied person to navigate the health system – let’s face it – in a complicated world, you have several – I don’t know, departments to deal with, people don’t tell you what they ought to tell you…

M: It’s so silo-ed – it’s a massive question because of course you know I think we are so lucky there is so much we have in New Zealand around our public health system, I deeply value that, I have a mother who was a nurse , and it just drives her bananas what she’s seeing as well. But I think that’s one end, I would say something about leadership and strategy and priorities, it’s got to be, and the organisations I see embracing access right throughout the country – that’s what sets them apart. We set up a group called the ‘Fab 50’ of leading influential New Zealanders, champions of accessibility, and it’s been incredible to see what they’ve achieved, but on the other side of that, it’s as simple as – how do we care for each other as human beings? If I could pinpoint one thing that was missing in my experience of the health care system, it was people listening to the patient, and listening to one another, and I think if we could create a culture of deep listening – and it’s interesting that a blind person says this, because listening is the thing I do most of – I think we could transform the health system…

K: What do you mean when you say ‘deep listening’?

M: Do you know I raised time and time and time again – I knew something was wrong. I deeply knew that there was something wrong.

K: This is when you had the infection?

M: Well, when I had the pulmonary embolism – it was the same week Jonah Lomu died of a pulmonary embolism – my friend’s father died that same week of a pulmonary embolism, and when I got into hospital and realised that I had five of them in my lungs and I was still alive…

K: what is a pulmonary embolism?

M: It’s a blood clot that leaves your legs – and it’s the result, usually after surgery and when you have breast cancer and massive surgery, because I was in a ten hour surgery, you are in probably one of the highest risk categories of getting a pulmonary embolism…

K: Because …

M: You know I don’t exactly know but I think it’s something to do with the fact that you’re not moving much. And so then because I was immobilised further by the infection, and the pneumonia, it was again the multiplier. But I, at a very human level, I raised it and raised it and raised it and said look, I know in myself something is not right, and I know it’s tricky for doctors because they don’t know me from a bar of soap, I might be just highly neurotic! (laughs) Yeah I am! But actually what I noticed was a lack of listening.

And I know that’s because people are busy, I get all of that..

K: I mean all that might come down to resources might’n it?

M: Resource is a major factor and again it is as a society what are we prioritising? Do we put people at the heart of everything we do here in this country?  I’m not sure we do. I think we try to, sometimes we get it right and then we get distracted.

I’ve just been to the most amazing conference – ‘Better by Design’ conference, such a privilege to be there, they’re talking about this thing called ‘design-led thinking’ – it sounds very fancy pants. Do you know what it is? Putting people at the heart of design. 

K: I talked to someone who spoke at that conference and he said the issue is empathy – if you can empathise with people, then you can understand what they need.

M: Yeah, it is that simple. It’s funny with Be., because actually at the heart of we are doing with Be. Accessible, is engaging with people’s empathy. And sometimes you can’t go directly there – sometimes you have to find different ways to bring people into a conversation about empathy, because it makes people nervous. There’s a vulnerability – but I think there are so many ways  - I’d love a conversation to explore how was can improve this (laughs)  - it is not that I have all the answers – of course I don’t – it’s complicated. But I think if we could start with leadership, and we could look at a culture of true empathy, and then – we live in the most amazing world, Kim, of technical solutions. When I think about the gadgets and the things we now have at our disposal…

K: Well maybe that’s the reason for a diminishment, a reduction of empathy?

M: I think if we create innovative products and services but don’t understand why we’re creating them, and we don’t have the heart, I think that’s true, and I think that is a real risk, actually. I think there is an opportunity though to create innovative solutions that actually still hold the human at the heart.

Do you know it’s a funny thing, I have this barometer in my life  - my oven (laughs) – because of course when you go through something like cancer, everyone says “you’ve got to eat well!” You know? It’s the key to everything – so I stopped drinking wine, and I’ve got this lovely new oven, do you know what? I brought what I thought was the simplest oven.  When there’s a power failure, or someone accidentally turns off my oven, I can’t use it.

K: Coz you have to set all those clocks and things?

M: Yeah. And I thought, “this is madness!” When did we get to a place in the world where something as simple as turning on the oven has become this complicated and it does do my head in, I have to say. This stuff is just so ridiculous because it is so simple, actually. But as long as we understand what’s driving us, what’s at the heart….

K: After you got your pulmonary embolisms dealt with, what happened then?  I mean, they sent you home, you had to go back into hospital

M: I went home, had to go on blood-thinners.

K: A whole other business isn’t it?

M: A huge challenge in its own right - and learning to inject yourself when you can’t see is really interesting! (laughs) Then what was complicated, what was really complicated, was that my wounds didn’t heal as they needed to from the surgery because my immune system was so compromised…

K: As a result of the infection and the antibiotics?

M: Yes, and the pulmonary embolisms, honestly it sounds like a bad joke doesn’t it?

K: You must have thought when will this end?

M: Well I did, and then it turned out that somewhere along the way the wrong sutures had been used

K: What! The wrong sutures? 

M: Yes so I had to go back in for further surgery…

K: What do you mean the wrong sutures!?

M: It’s just beyond belief and so I had to go back into surgery, which I have dreaded because I was so terrified of going back into surgery, but we had to remove the wrong sutures, and re-suture me, and then I needed… there was the whole question of … the cancer had actually gone into my lymph nodes as it turned out  - so then there was the question of what… this was … we then had to talk about the cancer treatment itself, and of course the oncologist…

K: I mean this is you, being treated for the treatment, but you haven’t yet addressed the cancer…so, did you have chemo?

M: The oncologist wanted me to have chemotherapy, radiation and hormone treatment. Because of the treatment for the treatment, as you so beautifully put it, it was so delayed, I couldn’t’ start chemo while I had open wounds. And so we eventually made the decision that actually, any benefit chemo might have had was no longer going to be of real benefit. And so we just decided collectively as a team that I would do the radiation treatment  and to be honest I just couldn’t face doing the hormone treatment after all of this. I was still – it took me a year, in a sense, to get over the original surgery…

K: And we’re not just talking about a physical recovery here are we – we’re talking … because you have to put your faith in the system when you’re suffering from that sort of disease. And then if you get let down by the system, it’s a psychic blow, isn’t it?

M: I felt completely broken.

K: It’s easy to assume that you are a particularly a strong and capable woman, and you clearly are, but you’ve had to learn to be that right?

M: Yeah. And I think that’s the thing that … I think resilience is an extraordinary human quality

K: But were you born resilient, or did you have to become resilient?

M: I think it’s a combination. I think I am very fortunate to have people in my life who love me, and I experienced incredible acts of love and kindness throughout this. I mean, most of that time I felt I was surrounded by quicksand, that’s how it felt to me – I couldn’t find a piece of land that felt certain or safe or secure. I felt utterly powerless, I couldn’t seem to determine my wellbeing, it felt like I lost all power and control - I felt there was nothing I could do. And so…

K: Was the system, the health system, able to deal with your loss of autonomy and anxiety?

M: Do you know there are individuals – I don’t think anyone goes into the health system unless they deeply care about people. So I had beautiful experiences with individuals in the health system.  The challenge is to find someone that’s holding the overarching picture – there was no one holding the overarching picture of all these elements. So I would go off to oncology to radiation, I need physio, I needed someone to talk to me about my blood clots, I needed someone to help me with my lungs – district nurses, GPs, it was so complicated. But no one is holding the overarching picture, so YOU hold the overarching picture.

K: This is a very common story in the health system isn’t it?

M: It’s a very common story. Do you know I have to say my mother is extraordinary (laughs). And she just is – she understands how to stay by your side during something like this.  My friends were extraordinary, they started by myself. And I think that is all people can do in some ways.

You’re in survival mode.

K: You’re always going to need your mum… that goes without saying, but the system should not rely on you having that.

M: Do you know the place that actually brought me incredible hope and joy and respite is an amazing place called Dove House. And it’s part of a hospice – the Dove Hospice – Glen Innes, Glen Eden, somewhere over there. Or Glendowie – one of the Glens! And they have this model where people with cancer can come, and they provide support in terms of a place to go - there’s a café, but also it’s a place of nourishment, you can do journaling, you can do creative writing, you can just be with other people who deeply understand what you are going through and you don’t have to explain anything. They offer free counselling, and support. That to me was - I don’t know how I would have navigated without that. But you are right – that sits outside the formal health system. So what’s needed, is when you’re in this situation, is to navigate and find where the points of light are. The other person who I have to deeply acknowledge is Doctor Erica Whineray Kelly, - I don’t know if you’ve come across Erica – she’s extraordinary – 

K: I have

M: Yeah. And she’s an old, old friend of the family – the crazy thing is that on the day that I found out I had breast cancer, she and I were presenting to a group of women at a business forum, and it was the first time we’d seen each other in about 30 years. And she would come and sit with me at my home, because she’s a breast surgeon. And even though she’s not my breast surgeon, she would try and help me navigate through the complexities - and she came both as a friend and as a medical specialist to help me understand, and she deeply, deeply models empathy.

What is amazing is she then understood that in her own practise, they had not factored in accessibility. And so hers is the first private practice in NZ to have now adopted our Be. Assessment programme – her whole practise is now undergone a process to become the most accessible breast cancer practise in NZ, she is now going off to international conferences as one of our top surgeons – and is a radical leader in the health space, she is courageous, and she is presenting to her colleagues throughout the world the critical nature of improving accessibility in our health system.

That’s when I start to feel hope – those are the things.  In terms of resilience I think I am lucky Kim because at least I have somewhere to channel – when I go through these experiences, and I think of it – it might sound a bit cosmic and it probably is – but I think of it as alchemy: taking the hardest bits of your life, if there is a way you can channel it and see it convert into something where there is change, it is incredibly powerful.

K: It’s the whole lemons into lemonade thing … that you do but it takes a certain type of person to do that.  I mean you’re not lucky - you make your own luck,

I’ve got a text in here saying this is really interesting interview – “I work in the public health system,” says the texter, who’s a physiotherapist, and they say they “don’t’ have time to listen or to reflect, and sometimes the patient doesn’t show up which gives unexpected free time when the mind can reflect and be creative – and I can’t be sure but I think the outcomes for next session is that it can be so much more empathetic and connected – going from an acute setting to a community one gives a little more time but it’s still not enough time for a good service for everyone. We all want to feel like we’ve done a good job, and we rarely do.” So I mean, that must be very unsatisfactory for people too – and you’re not coming at it from a position of bad people, critical – everybody wants to be on the same page…

I see you’ve got a big disability conference later in the year, this is the Inaugural Global Summit on accessibility. Wil you be bringing this information to that?

M: So Kim this is the ultimate lemon into lemonade - is it Lemoncello when it’s beyond lemonade??! Maybe, so I

K: Lemon curd…

M: Do you think? (Laugh) actually it is gorgeous, Mum used to make it lemon honey, lemon curd, divine.  A lot of sugar which isn’t so in vogue at the moment.. never mind. So the reason why – why not come back from cancer and hold a global summit – you know? Because you know why not!  But you know partly I feel an urgency around this. I think – it’s not that I think I’m about to drop dead, but equally I don’t know – so with something like this I have an added sense of urgency.

We’re holding a Global Summit and AUT University is partnering with us on that – they are an incredible example of an organisation modelling accessibility – they want to be the first gold-rated university in New Zealand for accessibility and they’re well in their way. So they’re hosting this event, but what we want this to be about is: The question at the heart of this Summit is going to be: what is possible?

I have this very simple model, where I want New Zealand to move from … I’ll use this language to illustrate what I mean, I don’t like it but it illustrates it quite well – from the language of ‘handicapped’, to ‘disability’, to ‘accessibility’, to ‘possibility’ – it’s moving along a spectrum of change.

Now I think we’re currently in the disability / accessibility part of the spectrum, - where I want us to get to as a nation is … we’ve got to get the accessibility stuff right absolutely – that‘s your legislation, your policy your basic stuff, your 101, your attitude which is not  simple – well it is simple in a sense but I understand the complexity of it – but what if we moved into a place where we started to innovate and think about what is  possible?

What would a truly accessible health system look and feel like? Let’s get together and re-imagine it. And I think to your point of your physio there, people don’t have the time or we don’t create the time, to reimagine what’s possible. So we keep trying to fix a broken system. And I think an event like this – what we want to do is bring examples from around the world – but also local examples together, to have a conversation where we really start to explore what is possible if we were to reimagine a truly accessible country. 

K: Truly accessible is one thing – there is a danger of tokenism I think… there’s a new association of advocates called Access Alliance - and they’ve pointed I think to the Spark Building in Victoria Street West – which they say has an ‘accessible’ entrance but no stop-off point for vehicles, and they have sweeping stairways and heavy doors, and the developer doesn’t want to spend money on a lift. So they’ve got, an ‘accessible’ entrance, but that doesn’t help because they’ve got all these other obstacles. 

M: And so you’re absolutely right – one of our biggest challenges – how do we get those developers in a room? How do we get those developers – because often it comes back, if you strip it right back – who’s got the money, who’s got the influence? (laughs) And that’s why the economic conversation is so critical if we’re going to have a conversation about what’s possible. Because if people just see this as a compliance issue, where they go ‘tick, we’ve met the building code’ – and that is the challenge with compliance, it is often about minimum standards, not about ‘how do we think about what we’re trying to achieve here, and who we’re trying to do it for?’ Now I don’t know who developed that building, but if that developer knew, in their heart of hearts, that we have an aging population, that currently 25 per cent – an increasing number – of people have access needs, and in fact the person who was then the building owner understand their clients, their customers and their staff are going to need access to come in and perform their jobs, people are going to start to demand better access. If people don’t understand the economic equation, it remains a ‘nice to do’, But it’s holding both. And I think what the Access Alliance is trying to do is really critically important – it is about how can legislation play a role in this? Legislation is one core pillar, but in addition to legislation, you can’t legislate for people to make you feel welcome.

You know, I went to see that amazing film Hidden Figures the other day, and I thought about that moment where she stands up and talks about the fact that the bathrooms she needs to use are all the way on the other side – it takes her 40 minutes to be there. So they get the bathroom sorted, that was massive – so that’s like your 101 of accessibility if you like, but in terms of her being able to progress up through the ranks of NASA, to be recognised, to be valued, to be seen as the leader, that’s a whole different conversation, and so that’s the piece - we’ve got to keep pushing. And I think the work of Be., we’re not down at the compliance end, it’s critical – we’re at the other end where we want to hold the thought leadership, we want to keep extending and challenging, we want to do it in a way where we help organistaions to come up with solutions – we want to bring people together who WANT to innovate for a truly accessible world and who understand the importance of it socially, culturally and economically.

K: Someone says you need to look at how the German health system works. Yolanda seems a big fan, she says it’s amazing, and someone else has texted top say they work in public health too and agree with the kōrero – there are dedicated and talented professionals working in our services who are frustrated by not being able to do better by all - there is a lack of organisational commitment to support empathic practise.

P.S. – by commitment, they say, I mean money. I’m not sure – do you think that’s true?  It’s not – it can’t be all about money.

M: it’s not that simple. I think it is - we’ve lost our heart. There’s something about that. I know it sounds really simplistic…

K: More money doesn’t buy you a heart

M: It doesn’t buy you a heart. And I think that of course resourcing’s important – I’m not naive – but what is important, but what is the cost to NZ Inc. right now of our current practises. And that’s the question I keep coming back to. We constantly are talking about the cost to improve and innovate, but what is the cost we’re paying right now not just by being inaccessible, but by not putting the heart back into our health system. And as I said this is not a criticism of the individuals because I deeply believe in the incredible talent of the health professionals, but I think we’ve got so taken off track in some ways. And I get it’s a massive challenge, I’m not underestimating that.

K: I need to ask you how your health is right now…

M: Where I am right now – my oncologist said “Minnie, in five years since the mastectomy and initial treatment, if we haven’t found cancer anywhere you can start to celebrate”. I’m at a year and a half – so we’ll hold the champagne and in the meantime I guess it gives an added… what’s the word – I mindful that I’m lucky to be alive – very mindful of that. I’m mindful that there are things I want to see done with my life and I’m very committed to injecting my energy into driving social change. 

K: And we’re very mindful that we’re lucky to have you around. So thank you.