Speaker 1: Apoge Production.
Speaker 2: Hi, my name's beck Woodbine and welcome to Tenderness for Nurses.
Speaker 2: I'm grateful for the person that I have the opportunity
Speaker 2: to be.
Speaker 1: So I hit it and parked it for Nelly four years.
Speaker 1: We always have free will, We always get to choose.
Speaker 1: We are autonomous.
Speaker 2: Hi everyone, thank you for tuning back into ten and
Speaker 2: Ess for Nurses. Well, it's the last episode of twenty
Speaker 2: twenty four and we have the amazing Lisa Cox joining
Speaker 2: us today to have a chat and I'm very excited
Speaker 2: to share her story with you all, which is quite remarkable.
Speaker 2: But before we get underway, I just want to say
Speaker 2: a really huge, heartfelt thank you to everyone for your support.
Speaker 2: The podcast is just tripled in size and I can't
Speaker 2: even comprehend it because in season one I just was
Speaker 2: hoping that one person would listen to it, and here
Speaker 2: we are now with thousands all over the world listening
Speaker 2: to the podcast, your support, sharing the podcast with friends
Speaker 2: and colleagues and listening. I cannot tell you how much
Speaker 2: that means to me. The idea of the podcast initially
Speaker 2: was just to help people show tenderness to themselves and
Speaker 2: to each other, and through the knowledge and vulnerability of
Speaker 2: the stories that have been shared by my guests. The
Speaker 2: feedback has been that people are showing kindness to themselves
Speaker 2: and to each other, and you're learning to just give
Speaker 2: yourself a little bit of space and be gentle with yourself.
Speaker 2: And for that, I humbly and gratefully say thank you
Speaker 2: to all my guests who have given up their time
Speaker 2: to come and chat and share their information and knowledge
Speaker 2: with you all. So please have a safe and wonderful Christmas.
Speaker 2: Don't forget to share, review like or don't like. It's
Speaker 2: each their own. But the idea of this podcast is
Speaker 2: to be kind to each other and ourselves, and I'm
Speaker 2: excited to let you know there's some pretty big things
Speaker 2: happening next year, so stay tuned. So now over to Lisa.
Speaker 2: Thank you so much for coming in.
Speaker 1: Thank you very much for having me. It really is
Speaker 1: great to be here.
Speaker 2: We actually ran into we live in the same precinct,
Speaker 2: and I ran into Lisa quite probably eighteen months ago,
Speaker 2: quite early in the morning, and you were coming back
Speaker 2: from training, and we had a bit of a chat
Speaker 2: and talked about the dogs or whatever, and then a
Speaker 2: mutual friend of ours, Carney, mentioned your name and showed
Speaker 2: me a photo. I was like, hang on, I know
Speaker 2: that person. She lives where I live. And then of
Speaker 2: course we ran into each other and I had to
Speaker 2: hit you up to come and speak on the podcast
Speaker 2: because you are amazing advocate for disabilities. So do you
Speaker 2: want to tell us a little bit about your journey?
Speaker 1: Yeah? Sure, And it has been been a journey for
Speaker 1: whatever a better word. And I suppose it all started
Speaker 1: twenty years ago when I was at Melbourne Port my morning,
Speaker 1: flying home to see my family doing what a lot
Speaker 1: of people at the age of twenty four do, climbing
Speaker 1: corporate ladder and I'd been to UNI loving life and
Speaker 1: I had a brain hemorrhage at Melbourne Airport, at the airport.
Speaker 1: At the airport, I don't remember that time, but all
Speaker 1: the accounts told my family apparently I was stuttering my words,
Speaker 1: they wouldn't let me onto the plane and then I collapsed.
Speaker 1: So I never made that flight, but spent the next
Speaker 1: three weeks in a coma, two months on life support,
Speaker 1: and over a year in hospital after that. So that
Speaker 1: first year in hospital was fun stuff and it was
Speaker 1: it was It was really really tough understand way, but
Speaker 1: I was a space cadet for the first few months,
Speaker 1: because I was on so much medication, my hands and
Speaker 1: hands and feet were quite literally rotting off, all turning gangerous.
Speaker 1: So my left leg, all of my right toes a
Speaker 1: night of my fingertips were appitated in the end from
Speaker 1: the medication. So the medication they put me on was
Speaker 1: brilliant because it saved my life. But it's a side
Speaker 1: effect that it took all the blood from my peripheries
Speaker 1: back to my vital organs, and so my nose turned
Speaker 1: back for a while. But I got to keep that,
Speaker 1: which is great. But as a result, I've got osteoarthritis
Speaker 1: everywhere all my joints. Is a normal thing as well
Speaker 1: that it can cause joint issues. I've had one hip replacement,
Speaker 1: so a stroking heat replacement, all the things that happened
Speaker 1: to old ladies. It was hard to four and obviously
Speaker 1: my permanent brain injury now from the stroke, my speech
Speaker 1: has been affected. I'm over twenty five percent blind and
Speaker 1: have things like epilepsy, kind of pain, chronic fatigue and
Speaker 1: all those sorts of thanks of the usual side effects
Speaker 1: of a brain injury.
Speaker 2: Was the brain injury? Did they or could they explain
Speaker 2: why it happened so spontaneously, and why are someone so young?
Speaker 1: So I was a fit, healthy twenty four year old,
Speaker 1: going to the gym a few times a week, eating
Speaker 1: all my vegetables, that sort of stuff. Yeah, didn't have
Speaker 1: any of the usual I suppose lifestyle factors that were
Speaker 1: meaning someone's more likely to have a stroke. But they
Speaker 1: did a lot of tests until my family that it
Speaker 1: was a streptogogust a virus. And one of the specialists
Speaker 1: said to quote him, bloody bad luck. So we still
Speaker 1: don't notice this day where I picked that up. Could
Speaker 1: have been the supermarket, It could have been anywhere.
Speaker 2: It can be anywhere.
Speaker 1: Yeah, so that's what caused the brain hemorrhage, and yeah.
Speaker 2: And the rest is history. Exactly how did you find
Speaker 2: that time in the hospital? I mean, I can only
Speaker 2: imagine you were really once you got your bearings that
Speaker 2: you're really angry and upset and worried about the future.
Speaker 2: How did you cope with that? How did your family
Speaker 2: cope with that?
Speaker 1: My family blessed them that for the first couple of months.
Speaker 1: I can't remember any of it before or after the
Speaker 1: brain hemorrhage, and I was completely untworry what was going
Speaker 1: on around. They remembered every minute. Unfortunately they got to
Speaker 1: call because I was in Melbourne, they were in Brisbane.
Speaker 1: They got to call that night to say this has happened.
Speaker 1: Come to Melbourne. We don't think at least it will
Speaker 1: be alive. In the morning they arrived, obviously it was
Speaker 1: the head of the largest intensive KENE in the Southern Hemisphere,
Speaker 1: said she's my father, sixth person here. You may have
Speaker 1: to turn off her life support if things don't improve.
Speaker 1: So for two months they sort of rock up to
Speaker 1: the hospital every morning, not sure if I'd be dead
Speaker 1: or alive. And to this day I feel terrible for them,
Speaker 1: even though some of my fault, I still feel like
Speaker 1: it is and I was just off with the fairies
Speaker 1: in any comera and yeah, yeah, so they have been
Speaker 1: my biggest support through all of this, absolutely wonderful. And
Speaker 1: when I came under the coma, I was many backed
Speaker 1: to Brisbane and then spent the remaining months in hospital
Speaker 1: and then depending on what surgery I needed, what had
Speaker 1: to be cut off for something that'd taken me to
Speaker 1: a hospital for a few weeks or another hospital, but
Speaker 1: they drip fed me information In terms of day one,
Speaker 1: they didn't say, here's what happened. Yeah, but slowly, bit surely,
Speaker 1: I'm like, oh, so that happened, and that happened. And
Speaker 1: then in the very very beginning, because I've been lying
Speaker 1: flat for two months, I didn't have any course stability.
Speaker 1: It's still pretty weak today. But I couldn't sit up
Speaker 1: and have a look around and see what was happening.
Speaker 1: I just knew that every day that the nurses would
Speaker 1: be doing something to one of my feet, and only
Speaker 1: found out months later that it's because my feet had
Speaker 1: turned gangerous of one of them in particular, and it
Speaker 1: was going to have to be amputated. So they did
Speaker 1: tell me that month before, and I cried my eyes.
Speaker 1: That was really upset, but woke up the next morning
Speaker 1: was like I'm completely gotten what And so they started
Speaker 1: not to tell me day after day of today it
Speaker 1: would be like ground hole day. Basically is that a
Speaker 1: blessing or is it a curse? I was kind of
Speaker 1: glad that they didn't because I just wasn't. I wasn't
Speaker 1: remembering anything, and when they did tell me, I did remember,
Speaker 1: And the next morning I woke up and swollen eyes
Speaker 1: and still remembered I specifically remember our nurse walking into
Speaker 1: the room just dumping a bit of brushes on my
Speaker 1: bed about prostatic limbs. I'm like, oh it, I was
Speaker 1: mentally not prepared, so there was that was a bit
Speaker 1: of a shock. And then that.
Speaker 2: Wasn't particularly kind to do it that way.
Speaker 1: Yeah, it wasn't. It wasn't, but I suppose they they
Speaker 1: didn't know. They didn't know that, and they certainly meant
Speaker 1: no malice, and then I were incredible. But and this
Speaker 1: is not a reflection of the healthcare system or anything,
Speaker 1: because it's brilliant. But I've spoken and written before about
Speaker 1: how my perceptions of what disability would look like had
Speaker 1: in part been shaped by the staff who would walk
Speaker 1: into my room go you're going to be disabled for
Speaker 1: the rest of your life, like it was a death sentence.
Speaker 1: And I was already upset because I later realized that
Speaker 1: was because I had only twenty four years worth of
Speaker 1: media stereotypes in my head. But on top of that,
Speaker 1: had everyone around me talking like, we're all about to
Speaker 1: go to a funeral because I was going to be disabled.
Speaker 1: But that's not to say it should have been let's
Speaker 1: celebrate sunshine and raises at all. But it's a how do.
Speaker 2: You find the medium, like I suppose, how do you
Speaker 2: find the sweet spot in that conversation.
Speaker 1: Yeah, it's it's really really hard, and I certainly can't
Speaker 1: can't speak for everyone, but that was just one thing
Speaker 1: I noticed that everyone around and was like, Oh, you
Speaker 1: got to be disabled. That's that's terrible. It's the worst
Speaker 1: thing that can possibly happen. And I don't want to
Speaker 1: minimize how horrible it was and and everything like that,
Speaker 1: but it's certainly, yeah, helped, It's certainly shaped a lot
Speaker 1: of shape my mood, and.
Speaker 2: I think it shaped your recovery when you had that
Speaker 2: mindset and people, you know, stuff that was saying you're
Speaker 2: now handicapped initially. Do you think it changed how you
Speaker 2: recover it or perceived yourself.
Speaker 1: That's a really good point. And I'm going to refer
Speaker 1: to some work coming at the moment with some students
Speaker 1: around rehabilitation and doing some consumer advisory work, and they're
Speaker 1: all physios and then talking about key outcomes and the
Speaker 1: metrics of that as are when the patient can walk again.
Speaker 1: And I sort of fly to them in one of
Speaker 1: the meetings that while so many people want to walk,
Speaker 1: you can't. It's not either possible for everyone or not
Speaker 1: realistic for everyone, and just by having that as the
Speaker 1: only outcome. I originally thought coming out of hospital that
Speaker 1: I have to walk again because that's the only way
Speaker 1: to recover. And now twenty years on, I've been a
Speaker 1: full time wheelchair years that for years and years and years,
Speaker 1: and travel the world and go to the gym. It
Speaker 1: certainly gives me more freedom and independence than.
Speaker 2: Was lying in the bed.
Speaker 1: Yeah, then lying in the bed, and then was explained
Speaker 1: to me by staff.
Speaker 2: So I just want to explain to you guys, Lisa
Speaker 2: is absolutely stunning woman, very eloquent. Even though the brain
Speaker 2: hemorrhage has impacted a little bit of her language, you
Speaker 2: can tell highly educated, thoughtful in her choice of words,
Speaker 2: dresses beautifully you know. Yes, there have been some imputations
Speaker 2: to fingers and to your feet, toes and nine fingertips,
Speaker 2: but she's super, super independent, which I think is pretty
Speaker 2: remarkable considering where you've come from.
Speaker 1: Thank you.
Speaker 2: You could have made a choice. I suppose to not
Speaker 2: be where you are now as well.
Speaker 1: Yeah, it would be very easy for me to not
Speaker 1: decide to do a lot of things I do, but
Speaker 1: I do them because I'm so grateful to be able
Speaker 1: to even though I don't drive a walk that doesn't matter.
Speaker 1: I can't do those things, but I still can do
Speaker 1: a hell of a lot of stuff, So I have
Speaker 1: a lot of gratitude for that. If my brain hemorrhage
Speaker 1: had been an inch up, down, left or right, we
Speaker 1: wouldn't be having this conversation today. I wouldn't have written
Speaker 1: books on his head, talk me doing my PhD, all
Speaker 1: those sorts of things. This wouldn't be happening.
Speaker 2: Okay, so tell us about your PhD.
Speaker 1: There's not a lot to say at the moment. At
Speaker 1: the moment, I'm really excited about it. But talk to
Speaker 1: me in a couple of years and there might be
Speaker 1: another story. But it's what I've been on my soapbooks
Speaker 1: about for many, many years, which is the representation of
Speaker 1: people with disability impacts our employment upcomes. So on a
Speaker 1: really big scale, it would be how disability in all
Speaker 1: forms of popular culture influences social arte comes like healthcare, employment, education.
Speaker 1: But to make that really specific and narrow it down,
Speaker 1: like you have to do for a PhD, it's just
Speaker 1: advertising and employment. Okay, So what was your background before
Speaker 1: you were My background wasn't advertising. So I was a
Speaker 1: copywriter and so all the as you see on TV,
Speaker 1: I'd write the scripts for those the print ads, I'd
Speaker 1: the headline, all the words.
Speaker 2: You now go into hospitals and talk about disabilities and
Speaker 2: management of disabilities to I'm assuming nurses as well as physios.
Speaker 2: What are the key points you like to talk about.
Speaker 1: I do a lot of work with the Queensland Collaborative
Speaker 1: around press injury prevention because I had three press injuries,
Speaker 1: including a Stage four in my sacram and often I'll
Speaker 1: speak at educational seminars or sometimes medical con differenstans were
Speaker 1: I'm the only person in that room without a medical
Speaker 1: degree or any any qualifications, but I have lived years
Speaker 1: of experience, so you need both. On one's not superior
Speaker 1: to or another, you absolutely need both. So a few
Speaker 1: of the key takeaways from that is to understand the
Speaker 1: importance of family, friends, caress, whoever it is in support,
Speaker 1: the support crew or the I'm not sure what you
Speaker 1: call them.
Speaker 2: All the support people to come up and like are
Speaker 2: with you.
Speaker 1: Yes, yeah, but as part of the care team that's
Speaker 1: thrown something to say. So an example of that my dad.
Speaker 1: I was very fortunate. My parents have retired, so who
Speaker 1: was at me with me every day at the hospital
Speaker 1: and was very hands on in terms of if I
Speaker 1: had to lift my leg or with my arm, things
Speaker 1: that I couldn't do for myself in those first early months.
Speaker 1: But unfortunately, because he wasn't a doctor of surgeon, he
Speaker 1: was often overlooked in terms of how much he could
Speaker 1: offer and how much he could help because the nurses
Speaker 1: were run off their feet. They did an amazing job
Speaker 1: and they were they were so so busy. But if
Speaker 1: only they'd said to him, try a B and C
Speaker 1: and the pressure injuries, it will it will help a lot,
Speaker 1: but or could have been avoided potentially. Yeah, So those
Speaker 1: first two months on life support, one of my pressure
Speaker 1: injuries on the back of my head as well. Yeah,
Speaker 1: on the on the back of my head to have
Speaker 1: a bull spot which is so much on my head
Speaker 1: dresser remastering around the time, on my take and on
Speaker 1: my heel, on my remaining foot.
Speaker 2: When I went through and did my nursing training at PA,
Speaker 2: that was drilled into us. You know, every few hours
Speaker 2: we would turn our a couple of hours actually, we
Speaker 2: would turn our patients from one side to the other
Speaker 2: side back. When I and I did a lot of
Speaker 2: night duties. I would, you know, do a sponge bath,
Speaker 2: we'd check their back, that sort of thing. I mean,
Speaker 2: that was just nursing one oh one faus and before
Speaker 2: I set up my own clinic and I was still
Speaker 2: doing palliative care, I used to do night judy. It
Speaker 2: was when a hospital, but that now has been shut down,
Speaker 2: and I used to wear with this an amazing nurse
Speaker 2: called Mary, and Mary and I would just get together.
Speaker 2: We'd have our trolley, we'd get our water, you know,
Speaker 2: and we would do turns and washers on everybody. And
Speaker 2: there were tool us that used to run I think
Speaker 2: it was a twenty two bed ward and the tools
Speaker 2: would just go through and do everybody, just make sure
Speaker 2: everyone was done. But recently, well not recently, probably just
Speaker 2: before COVID, I was in hospital in a private hospital,
Speaker 2: and that didn't even I didn't even get a post
Speaker 2: top sponge. I don't even know if that stuff even
Speaker 2: happens anymore in hospitals because I haven't worked in a hospital.
Speaker 2: But for me, it was so important to make sure
Speaker 2: and maybe it was the hospital training or how I
Speaker 2: was trained, but it was so imperative to keep moving
Speaker 2: that patient so that you didn't get a bed saw
Speaker 2: there still happened, and if they happened, you then manage them.
Speaker 2: But I don't know, do you find that that happens
Speaker 2: when you're in hospital now? They don't do that well.
Speaker 1: I suppose one of the other things I talk about.
Speaker 1: I show photos of my hands on my feet quite
Speaker 1: literally rotting off and I couldn't feel a thing. I
Speaker 1: didn't know that my feet were gangrass and black and
Speaker 1: weeding because I was on so many painkillers. But that
Speaker 1: stage for my sacram how killed. I don't know if
Speaker 1: it worked its way through the painkillers. And my point
Speaker 1: when I present on this is that you may have
Speaker 1: a patient with really complex trauma and bit's falling off everywhere.
Speaker 1: That doesn't mean that a tiny little pressure injury somewhere
Speaker 1: on their sacrumd body anyway can't be the most intense
Speaker 1: pain that they're feeling. So pressure injuries are really really deceiving.
Speaker 1: Just because they're not big and bleeding everywhere and discussing
Speaker 1: doesn't mean that they're not the most intense pain.
Speaker 2: I've fetured my sacred at the end of last year,
Speaker 2: and I have to tell you it was the most
Speaker 2: painful thing that has And I've had surgery and whatever,
Speaker 2: the most painful thing I've ever done, like ever had happened.
Speaker 2: I cannot tell you the pain and all the nerves
Speaker 2: that come out of that area, and you know that
Speaker 2: go to your bladder and your bow and your legs,
Speaker 2: and so in my mind, I can absolutely understand that
Speaker 2: that must have been unbelievably painful for you.
Speaker 1: So agonizing, and that's you bring up a point that
Speaker 1: all the nerves gong for. There's the assumption that pressure
Speaker 1: injuries disappear, and by that I mean it's not as
Speaker 1: red as it was, but there are still surfaces I
Speaker 1: can't sit on because it's so painful, and still still
Speaker 1: twining is on things in the gym at certain angles
Speaker 1: if I you know that, on that sacrament all that
Speaker 1: really hurts, and why not do that? So there's this
Speaker 1: assumption from staff that oh, just goes away, you'll get
Speaker 1: over it, it will heal, But those nerves don't. Now the
Speaker 1: skin might.
Speaker 2: Yeah, I can hand on heart to you. I still
Speaker 2: have issues and mind was a fracture and I didn't
Speaker 2: break the skin, so I can't even comprehend if it
Speaker 2: was deep. You know what grade for yes in that area,
Speaker 2: which is a that's nasty.
Speaker 1: Yeah, there was bone unfortunately.
Speaker 2: So you know it just actually gives me goosebumps.
Speaker 1: Yeah. So every morning I'd get transferred by some lovely
Speaker 1: waters and put onto a shower trolley. Yeah, and I
Speaker 1: joke about it hosed down like a race horse. But
Speaker 1: and that absolutely just killed just just lying on that surface.
Speaker 1: But we soon worked out that putting it a gel
Speaker 1: cushion under one hip, yeah, that's all took. But that
Speaker 1: was an even even lying on the bed. Dad and I,
Speaker 1: my eighty year old father, worked out that if we
Speaker 1: scroll up a Queensland Health towel and shove that under
Speaker 1: one hip, then yeah.
Speaker 2: So takes the pressure of it.
Speaker 1: Bit of trial and error on our part.
Speaker 2: I love it. I love this. Your dad was so innovative.
Speaker 2: So and what was the impact on your parents?
Speaker 1: Oh God, I can't speak for them, and I can
Speaker 1: only imagine that they were initially devastated because parents shouldn't
Speaker 1: have to bury their children and to have none of
Speaker 1: the It's not like they were expecting something to happen
Speaker 1: because I was the fit and healthy one like all
Speaker 1: of my brothers and sisters. And it really just just
Speaker 1: came out of the blue. But I can only guess
Speaker 1: that that were just absolutely devastated.
Speaker 2: Moved back up here to Queensland. Were you able to
Speaker 2: get a great network of people to stay with you
Speaker 2: to help you, or did your parents take all that
Speaker 2: on themselves.
Speaker 1: My parents took that on. Initially I moved back home
Speaker 1: with mom and dad, which is just what every twenty
Speaker 1: five year old wants to go. Yep. But they lived
Speaker 1: in this two story brick house, so I didn't get
Speaker 1: upstairs for the first while, but just stayed down in
Speaker 1: one of the spare rooms and couldn't wait to get out,
Speaker 1: But at the same time was really grateful to be
Speaker 1: there because it was a roof of my head and
Speaker 1: someone to help me get back to it. But I
Speaker 1: had to relearn on the basics. Initially in hospital, I
Speaker 1: was just learning to sit up again and speak and
Speaker 1: brush my own teeth. But then moving home was doing
Speaker 1: the basics like making a cup of coffee or a
Speaker 1: tea or something like that, until eventually I can move
Speaker 1: out and move out on my own, not too far
Speaker 1: from them, so they could still come visit and drive
Speaker 1: me to appointments, which they doing a lot of in
Speaker 1: the early that.
Speaker 2: Was that important for you to get your independence.
Speaker 1: Yes, it was very very They used to call me
Speaker 1: Miss Independent in the hospital because the nurses were beautiful
Speaker 1: and we're just you know, i'll help you, I'll do
Speaker 1: that for you, and like, no, I'm going to do
Speaker 1: it myself. And I'd failed miserably half the time, but
Speaker 1: I still wanted to give it a red hotel. I
Speaker 1: put a red hot crack because I knew that to
Speaker 1: move out on my own, or to even just be
Speaker 1: home all myself, I wouldn't have or I didn't want
Speaker 1: to have a bunch of support around me twenty four seven.
Speaker 1: So getting that independence back, and it was it was
Speaker 1: kind of funny because I'd been this fierce, ficy little
Speaker 1: woman beforehand, and I'm like, yeah, I can take on
Speaker 1: the wall. I can do it. Can someone please tell
Speaker 1: my shoelaces?
Speaker 2: Like I.
Speaker 1: Was so incapable of doing everything, But yeah, I still
Speaker 1: wanted to give everything. I could have read helt cracks.
Speaker 1: So there were things that the nurses like, you can't
Speaker 1: do that, it's not safe. Getting myself onto the shower
Speaker 1: chair in the mornings, and just getting the bathroom, like no,
Speaker 1: I'm going to I'm going to do that and round.
Speaker 1: I'm not recommending that people go against you.
Speaker 2: Would have been the nurse's worst nightmare. I was.
Speaker 1: I was, and some of them have have told me
Speaker 1: that over a laugh.
Speaker 2: I love it. I'm so impressed with your positivity. Was
Speaker 2: that a trait of you prior? Mum would say I
Speaker 2: was that determined?
Speaker 1: Determined a little just running around and always saying why
Speaker 1: so the doctors. I know the doctors as well, instead
Speaker 1: of just saying this has happened, and this is why.
Speaker 1: I'm like why. I wanted to know that the background
Speaker 1: as to why everything was happening. Even though I didn't
Speaker 1: didn't have that medical background, I still wanted to know why.
Speaker 2: But you have a right to understand that well, ask
Speaker 2: those questions, and there was there was no I didn't
Speaker 2: have an iPhone back then or a smartphone.
Speaker 1: And I'm kind of fortunate for that way because these
Speaker 1: days I'm told something and straightaway I'm on Google, so
Speaker 1: you know, put meant as well not just Google search.
Speaker 2: Yeah. Put. Men's amazing. That's a good one.
Speaker 1: It's it's good. But I probably read things I shouldn't
Speaker 1: be reading. And my doctors used to talking off the
Speaker 1: ledge in terms of moving in his office going I
Speaker 1: think I've got X, Y and Z, and it's like, really,
Speaker 1: let's talk about that.
Speaker 2: So you moved out on your own. I'm assuming you
Speaker 2: had some amazing support obviously from family and friends. You
Speaker 2: would have then also needed to have ots helping you out,
Speaker 2: physio social workers do they really no social work and psychologists?
Speaker 2: Did you? And you had that team around you? Do
Speaker 2: you still have a team around you like that?
Speaker 1: I do. It's a it's a different team and changes
Speaker 1: year to year. But I was going in for weekly
Speaker 1: physio as an outpatient. After that first year, when I
Speaker 1: was technically discharged, I'd go back into physio and then
Speaker 1: not really any ot. So I was I was a
Speaker 1: professional writer and losing all the tools of my trade,
Speaker 1: my fingertips, my eyesight, and my part of my brain function.
Speaker 1: That to me was more devastating than losing the ability
Speaker 1: to walk. And so I bought myself the cheapest laptop
Speaker 1: I could when I got back to mum Dad's place
Speaker 1: and just sat at the kitchen table and taught myself
Speaker 1: how to type Wow with three fingers.
Speaker 2: That's so cool.
Speaker 1: So now I write still, But that that was one
Speaker 1: one thing that I really wanted to get back because
Speaker 1: there's really great text voice to text soft whatever. Because
Speaker 1: my voice is a bit funny. Sometimes it doesn't always
Speaker 1: work the best.
Speaker 2: But I'd be amazing for you now, yes, yes or no.
Speaker 1: Yeah, it's getting getting my head around all the all
Speaker 1: the new tech, but just being able to put my
Speaker 1: hands on keyboard and write that was that must be
Speaker 1: really want to happen place. Yeah, it's I hope lace
Speaker 1: writing with you.
Speaker 2: And I don't want to sit here and just you know,
Speaker 2: talk about the past and bring all that sort of
Speaker 2: stuff up, because I'm sure you know everyone does that.
Speaker 2: What I'd love to talk to you about is the
Speaker 2: changes you want to see around people with disabilities and
Speaker 2: what's happened with NDIS and the funding that's come been
Speaker 2: taken away from that, and you know, getting onto an
Speaker 2: airplane and how they can make that easier for you.
Speaker 2: You know, what are some of the things that need
Speaker 2: to change to make life simpler for someone that might
Speaker 2: be in a wheelchair.
Speaker 1: Okay, so much needs to change, But at the same time,
Speaker 1: I don't want everyone out there to think, oh, it's
Speaker 1: too overwhelming, I'll do nothing, because sometimes the changes that
Speaker 1: need to have made are so so simple, whether it's
Speaker 1: just addressing somebody differently, because that's the other misconception that
Speaker 1: where and everybody with the disability is the same. But
Speaker 1: you can have two people with the same diagnosis who
Speaker 1: are completely different. So I've often had a lot of
Speaker 1: people say, oh, brain injury, strokes. Yes, my ninety year
Speaker 1: old grandfather had a stroke. I know all about it.
Speaker 1: I'm like different, twenty four year old woman. Not the
Speaker 1: same thing.
Speaker 2: It's like MS. You know, a male has MS very
Speaker 2: differently to a female, and two female with MS definitely different.
Speaker 2: You know, it's horses. We're all different.
Speaker 1: Yep, exactly. And even I knew one person who was
Speaker 1: a partial paraplegic and she thought everybody with everybody in
Speaker 1: a wheelchair had bal bladder problems. No, that's not all
Speaker 1: of us. But you know, some people's smilele injuries may
Speaker 1: but you have to note that they're all all completely different.
Speaker 1: So I do a lot of a lot of traveling
Speaker 1: to work and with my husband, and getting onto an
Speaker 1: aeroplane isn't too bad for me. But I know there
Speaker 1: has been some really great workdown over in the UK lately.
Speaker 1: Am not getting wheelchairs onto planes. But the thing for
Speaker 1: me is that I actually want to get out of
Speaker 1: this because it's it's great to get me from A
Speaker 1: to B for half an hour or something, but to
Speaker 1: sit in this for eight hours, I couldn't think of
Speaker 1: it having worse.
Speaker 2: No.
Speaker 1: Yeah, and I have a pressure pressure injury cushion all
Speaker 1: the time, but.
Speaker 2: Even sitting on that for eight hours, oh yeah, it's
Speaker 2: still not going to help prevent an injury eight hours
Speaker 2: down the track. You know, if your skin's compromised, you know,
Speaker 2: So I can understand then. And also, I mean imagine
Speaker 2: sitting in a wheelchair if you've got an eight hour
Speaker 2: flight or a fourteen hour flight, yeah'd be horrendous.
Speaker 1: I know some people who may be a quadriplegic soul
Speaker 1: or something like that. I actually want to stay in
Speaker 1: the wheelchairs. But again, everybody is different, so you can't
Speaker 1: just assume that old wheelchair users want to stay in
Speaker 1: their chair or want to get out, understanding that we're
Speaker 1: not all not a monolith and we're all very different.
Speaker 2: So the terms disability is it the correct term? So
Speaker 2: for me to have introduced you someone that is a
Speaker 2: disability advocate, is that correct? Am? I? Am? I addressing
Speaker 2: you in an appropriate manner.
Speaker 1: For me, that's absolutely fine. And disability, generally speaking, disability
Speaker 1: is something that people shy away from using that word
Speaker 1: and use words like differently able and things like that.
Speaker 1: And I can't speak to everyone, but the majority of
Speaker 1: people disabilities I've spoken to can't stand all these funny
Speaker 1: little words. Instead of using disability, just call us disabled
Speaker 1: and those sorts of things. But I have come across
Speaker 1: some people who don't like the word because of the disabled.
Speaker 1: So again coming back to this idea of everyone is different,
Speaker 1: ask the individual, just ask it's yeah, yeah, And to
Speaker 1: be honest, I prefer to just calling you lixa Yeah, that's
Speaker 1: exactly right, that's exactly right.
Speaker 2: Yeah, you know so. And I will offer if I
Speaker 2: and have always done this, if you know, I see
Speaker 2: someone struggling or you know, needs a hand with a wheelchair,
Speaker 2: or you know, some groceries or whatever. And I've had
Speaker 2: people that have loved the help on people that have
Speaker 2: told me to piss off each their own yep. But
Speaker 2: is it appropriate to approach someone and ask them, you
Speaker 2: know that might be in a wheelchair, like, hey, do
Speaker 2: you need a hand? Or is that offensive?
Speaker 1: I personally don't mind it defensive and knowing that your
Speaker 1: heart's in the right place. And I used to see
Speaker 1: example the other day when I was speaking about something.
Speaker 1: I'm not that strong, but going up hills, I'll have
Speaker 1: people come up to me and say, do you want
Speaker 1: to help up that? Hell out mean, yes, please the chair.
Speaker 1: But it's when you go in and just start pushing
Speaker 1: the wheelchair or grab the groceries and assume that they need.
Speaker 2: Help, or as in someone just goes and grabs it off.
Speaker 1: You just starts pushing the wheelchair or going to the groceries.
Speaker 1: That's that's when it becomes the problem. I even heard
Speaker 1: of people who use a white cane for walking. People
Speaker 1: think they're helping by picking up the cane and placing
Speaker 1: it and that that's really so intating as well. So
Speaker 1: I personally wouldn't have a problem with that, and depending
Speaker 1: on the situation, I'll be incredibly grateful. I've had people
Speaker 1: come up to me in the supermarket and say, can
Speaker 1: I grab that for you on the top shelf. I'm like, yes, please,
Speaker 1: because even though I can, I can stand when I
Speaker 1: need to. It's very very taxing. Have you found people
Speaker 1: to be kind most of yeah, and I keep in
Speaker 1: mind that people's even if they don't use the right words,
Speaker 1: necessarily their hearts are in the right place and they
Speaker 1: mean well. And I used to be that non disabled
Speaker 1: person who probably said the wrong thing. And so now
Speaker 1: when I have people coming up to me and looking
Speaker 1: a little bit scartered, oh I don't want to offend like, oh,
Speaker 1: that used to be me, So I can give them
Speaker 1: a little bit of compassion empathy.
Speaker 2: Yeah. Yeah, so now a bit of goss. How have
Speaker 2: you and rend me.
Speaker 1: My gorgeous husband? Yeah? We met online because I no
Speaker 1: longer play competitive team sport, which I used to, no
Speaker 1: longer worked in an office which I used to do,
Speaker 1: and was the way to meet people and didn't enjoy
Speaker 1: going to bars and things because you just get beer portal.
Speaker 1: So we met online.
Speaker 2: Love it. So how long got did you guys state.
Speaker 1: For until we got married?
Speaker 2: Yeah?
Speaker 1: About four years.
Speaker 2: Issues and married and they have a boofer, little Diurgie.
Speaker 2: That's very cute.
Speaker 1: I have to say, Louis the little gremlin. He's about
Speaker 1: four years old. So we've been married now for about
Speaker 1: eleven years.
Speaker 2: Eleven years. Yeah, when you and Ran first started dating,
Speaker 2: I'm assuming on your profile you were very open about
Speaker 2: that you had a disability. How was that perceived by
Speaker 2: other people online?
Speaker 1: There's there's other people in this rain, okay. So I remember,
Speaker 1: for example, the one of the few times I actually
Speaker 1: did go out to a bar because I can stand.
Speaker 1: I was standing at the bar, so this cracking guy
Speaker 1: across the from bar making a bit of eye contact,
Speaker 1: and then he started to walk around in the bar
Speaker 1: and I'm like, ohoh, sat down in my wheelchair, and
Speaker 1: then he took one look at me in the waw
Speaker 1: chair and just kept on walking in the other direction.
Speaker 1: And I met some other great guys online, but they
Speaker 1: just won't write for me. So Gren wasn't the only
Speaker 1: guy to be nice. Someone nice, but I'm com so superficial.
Speaker 1: And he's hot as well, so can I say, I'll.
Speaker 2: Look at him sitting over there guys and he's all embarrassed.
Speaker 1: I love it. I love it.
Speaker 2: And you actually have to see these guys together. They
Speaker 2: really love each other. It's really beautiful. It's really beautiful
Speaker 2: to see. So how many people in Australia would be
Speaker 2: classed as having a disability?
Speaker 1: So all one?
Speaker 2: Is it? One in ten? Would it be two in ten?
Speaker 1: Twenty percent of the global population, twenty percent of globally.
Speaker 1: I think it's a little bit less in Australia. Yeah,
Speaker 1: it doesn't include people who choose not to identify as
Speaker 1: to say, well, maybe have a chronic illness or your
Speaker 1: diverse or something that. So it's probably much much larger.
Speaker 1: It has topped and changed a little bit. I saw
Speaker 1: sixteen percent and globally twenty one in five people is
Speaker 1: a good way to think about it.
Speaker 2: Oh my lord, you know. I was in New York
Speaker 2: at Christmas last year with my daughter and I had
Speaker 2: just interview Dinna Asha Pelapana, who is the most great
Speaker 2: divine person, and we all fell in love with him
Speaker 2: here and it made me really aware walking around New
Speaker 2: York that I didn't see anyone in a wheelchair, and
Speaker 2: walking around or getting around New York would have been
Speaker 2: a shit show because of all the unevenness of all
Speaker 2: the It must be so complex for someone to get
Speaker 2: around New York and see one of the most remarkable cities.
Speaker 2: I'm sure it can be done, but it must be
Speaker 2: quite complex for someone. Yeah, have you have you been?
Speaker 1: I've been to New York and fortunately I was there
Speaker 1: with Ran and I couldn't have done it by myself.
Speaker 1: So we love to travel, but I won't do it
Speaker 1: by myself, even something as simple as going going to
Speaker 1: Sydney for work, counter that myself because I can't take
Speaker 1: the risk that if there's a hill and I can't
Speaker 1: get up it because I don't have a powered chair. Yeah,
Speaker 1: and things like that.
Speaker 2: But did you find that in New York that it
Speaker 2: was very good?
Speaker 1: It was a bit of up and down, although I
Speaker 1: had my little eighteen month old nephew with me, as
Speaker 1: well as my sister and her husband, so I think
Speaker 1: we were stuck to a lot of the flat, perfect
Speaker 1: flat areas. Yeah, what a city. It's beautiful, but the
Speaker 1: places that we go shouldn't just be shopping centers because
Speaker 1: they're flat. There's plenty of places that we want to go,
Speaker 1: but it's you know, ald parts of Italy, in Venice
Speaker 1: and things like that. But I just look at the
Speaker 1: architecture and think that's gorgeous. But I could never do.
Speaker 2: It if people wanted to try. And and I don't
Speaker 2: know now with the legislation having been passed about a
Speaker 2: reduction in n dies, is there any way that can change?
Speaker 2: And if there is, what can we do to try
Speaker 2: and get that funding back.
Speaker 1: That's a good question. And Bretta and I have been
Speaker 1: on the phone for months and now to the NDIS
Speaker 1: and that's just one one person, one of us. And
Speaker 1: I've often often said that I've got enough trouble with
Speaker 1: the paperwork, but I don't have an intellectual disability or
Speaker 1: anything like that. So I really feel for people who
Speaker 1: who struggle with the paperwork and don't have that support team.
Speaker 1: A really complex it's amare, and for a good reason
Speaker 1: in some cases, because unfortunately there are people who will
Speaker 1: take advantage of that. And there's all sorts of enforcements
Speaker 1: in place to make sure that doesn't happen, which is great,
Speaker 1: but sometimes they do stop funds from coming into places
Speaker 1: where I needed.
Speaker 2: Yeah, So if someone wanted to support NDIS being returned
Speaker 2: back to you know, supporting more people with the disability.
Speaker 2: How do we make life easier for our brothers and
Speaker 2: sisters that have a disability.
Speaker 1: They're getting in touch with local moments would be a
Speaker 1: good start. There are some wonderful platforms online and whether
Speaker 1: it's individuals who do a lot of advocacy around NDIS
Speaker 1: or organizations themselves rather than the individuals getting in touch
Speaker 1: with them and finding out specifically what with the best avenues.
Speaker 2: And you think it's something we really need to work
Speaker 2: towards as a community.
Speaker 1: I think Australia is incredibly fortunate to have the NIS.
Speaker 1: Unfortunately there are idiots for there are a better word
Speaker 1: I could don't want to don't want to spoke too much,
Speaker 1: but people taking advantage of the system. And while I
Speaker 1: can completely understand what this new legislation, I looked at
Speaker 1: a list of things that have been excluded and was
Speaker 1: horrified because people have obviously been claiming for certain things
Speaker 1: and the text doesn't need to pay for half of
Speaker 1: those things. But by the same token, there are plenty
Speaker 1: of other things that people's disabilities to need, and I
Speaker 1: think they're now starting to catch on to the fact
Speaker 1: with Kurt Ferny there, etcetera, that people with disabilities need
Speaker 1: to be driving the conversation. It's not good enough to
Speaker 1: have a bunch of able bodied, middle aged white heterosexual
Speaker 1: guys sitting around a boardroom deciding what disabled people need.
Speaker 1: You need our voices in that conversation.
Speaker 2: That I couldn't agree with you more. I have enjoyed
Speaker 2: this so so much. Thank you for being my very
Speaker 2: special last guest for your last I know, I actually
Speaker 2: feel like it was all meant to be. Such a
Speaker 2: great chat. Have a wonderful, wonderful Christmas, and thank you
Speaker 2: for taking the time. And thanks friend for helping Lisa
Speaker 2: get here. I really appreciate it.
Speaker 1: Thanks Bagging, You're welcome.