#19 Mel Harrison - Sitting Low, Reaching High

We're back!

Welcome to Season 2 of Enabled - the podcast where we talk about, normalise and celebrate disability and mental health. 

We are very excited for you to hear this episode with Mel Harrison, from Sitting Low, Reaching High. 

Mel is a disability advocate who was born with severe kyphosis, scoliosis and arachnoid cysts, and has been a wheelchair user from the age of 14. Despite this, she only received an official diagnosis for her disability last year in 2023 - 42 years after she was born! She's a rare one; less than one in one million people in the world have her particular disability. 

Mel shares with us her passion for adventure and education, as well as why she doesn't like to describe herself as disabled. 

Make sure you check this one out, and check out what Mel is up to on her social media!

Transcripts available for each episode on the website: https://enabled.buzzsprout.com

Let us know what you think!

Get in touch with us through Facebook:
https://www.facebook.com/EnabledPodcast/


Or email us on:
podcast@advocators.com.au

This episode is brought to you by Ability Advocators:
https://www.advocators.com.au/
(02)65 824 946

Transcript

Kirsty: [00:00:00] Hello and welcome to Enabled, the podcast where we talk about, normalise and celebrate disability and mental health. 

We are trying out some new software today that we've never used before, so that's always dangerous. I am basically a Luddite, so 

Colin: Technophobe. 

Kirsty: Yes, basically. I'm a technophobe. Yeah. Great.

Colin: Two of us in the same room. Fantastic. 

Kirsty: This could go really badly. But hopefully not, because we're very excited about this episode. We have a very exciting guest. She is a disability advocate. She's the founder of Sitting Low, Reaching High - Mel Harrison. 

How are you, Mel? 

Mel: I'm very well, thank you both for inviting me to be part of this podcast. I'm pretty excited about it. 

And I think technology, we all know it doesn't always work. We make do with it. And that's even part of the disability space. So we've all got [00:01:00] to adapt, and we've always got to be flexible. 

Kirsty: Absolutely. Do you know, I was thinking about that the other day, the amount of assistive devices that there are in the disability world.

You almost don't have the luxury of declaring yourself a Luddite and saying, I just don't like technology. Oh, I can't even remember where I heard this story, but someone was saying that she has some assistive technology on her phone, but every time her phone updates, she has to relearn how to use it.

That's just such a huge additional mental load when you're relying on that technology to live a functional life. 

Mel: Absolutely. And it's just an extra barrier that often people with disability need to explore and need to face. 

When we think about disability, we know that often people don't feel like they have a disability. It's not until the environment or people's attitudes let them think that they have a disability. So, if we have technology or we have systems in place or the [00:02:00] environment's not accessible, then that's when the barriers come up and that's when the frustrations come up. It's not the actual person having the disability that's the issue.

Kirsty: I think you might be Mel, one of the busiest people I know. I met you a couple of weeks ago in Port when you were here as a Consultant for the Australian Centre for Disability Law. Since then you've emceed a national conference, Safer Girls Safer Women, featuring our brand new Disability Discrimination Commissioner.

And you've also had an up close and personal encounter with the Fire Brigade. Can you tell us about that? 

Mel: Yes, so I was running the national conference - and that's all around social and sexual safety across our workplaces across the country. And we're essentially writing guidelines for workplaces where they can understand better ways that they can communicate and they can work with people with disability that come into their premises to make things more inclusive [00:03:00] across the country.

And so it's not always on the person with disability having to do the work. Other people can understand how to do that as well. And by doing that, we've been going across the country, interviewing people that have disability and asking them what they want in the guidelines. 

And so three days before this conference, my lift at my complex decided to break down. And I live on level four so I couldn't get out. And essentially it wasn't going to be working before I needed to get out to be at this event that I was running.

Kirsty: Wow. 

Mel: So I went on a little bit of a rampage of going, well, I need to get out and I'm not working on this meeting for nine months... So I did have lovely people that live in my complex willing to carry me down the stairs, which was so lovely. But [00:04:00] I ended up contacting the fire brigades in the local area and they said to me that they could do it, but they can't guarantee, because obviously if an emergency comes up, they take that as a preference.

So they're like, well, on the morning, call 000. And I was like, I'm a bit uncomfortable doing that. But they put me straight through and probably in like 40 minutes three fireys (two men and one woman) came and they got me down the four flights.  

Kirsty: Really highlights that extra level of vulnerability for people with disability because yeah, in an emergency or something like that, you can just take the stairs, but obviously that's not an option for you.

Also having to get the fire department in, I couldn't decide whether that would be amazing or horrifying. Was it almost like being able to meet Mr. December from the firefighter calendars? 

Mel: Yeah, yeah. Oh, it was really, it was actually really, it was cool. They were so lovely. [00:05:00] Like we had a photo at the end and the reality was like, I preferred them carrying me down than anybody else.

Because even if they haven't carried someone in a wheelchair down the stairs, they carry heavy equipment all the time.

Kirsty: And you don't have to see them on a regular Tuesday. They’re not your neighbour.

Mel: So it's kind of one-off, and not feeling like I'm different or anything like that.

Kirsty: So Mel, you've had a pretty interesting journey in terms of your personal lived experience.

Can you share with us a bit about your disability and how that sort of progressed for you over time? 

Mel: So, I am 42 years old and the day after I met you, I actually finally got a diagnosis for my disability. 

Kirsty: Oh wow. 

Mel: So yeah, it's taken 42 and a half years. So my particular diagnosis is very rare.

Less than one in 1 million in the world have it. There's only one other [00:06:00] person in Australia. So I've lived with it my whole life, but I only ended up in a wheelchair when I was 14 years old and that was through complications of surgery. But one of the reasons I think that I'm really passionate about this work, and particularly around education, is that when I was going to primary school, I wasn't going to be allowed to be in the mainstream primary school that my sister was going to.

So I was walking and I was still able to do everything. But because I wasn't able to do things like contact sport, etc, the particular headmaster at the time, thought that it would be better that I go to a special school. And my dad was pretty adamant that wasn't going to happen. Not that there's anything wrong with that, but it was the fact that I didn't need to.

It took two weeks before I was allowed into the school. [00:07:00] And the only reason why I was allowed into the school was eventually my dad opened her door of her office and said, if you don't let my daughter in the school, I'm taking you to Court. But it was just a thing that I always resonate with because - I don't remember it, because I was only four years old - but I always sit there and wonder if I didn't have my dad doing that, where would my life be now? Because I know it wouldn't be what I'm doing now. It would have been a completely different kind of life. But it also makes me sad that it took such a fight. It's something that shouldn't have been a fight. And a lot of the stuff that I do is around trying to raise that awareness and to try and break down those barriers and just for people to recognise and see that we're all different.

And we all have our own needs. But it doesn't mean that we need to like segregate or we need to treat [00:08:00] people differently. We just need to work out what it is that people need and just focus on that, rather than focusing on the fact that someone's different. 

Kirsty: So that our listeners understand, you're a wheelchair user and you said, I think, that was as a result of complications of surgery when you were 14.

Is that right? 

Mel: Yep. So I've had 16 major surgeries on my back up until the age of 14. And the last surgery, I ended up in a wheelchair. Not necessarily because of the surgery, but because of the syndrome that I have. I've got arachnoid cysts, severe scoliosis, severe kyphosis and severe bone and muscle tone loss.

Kyphosis is the curvature outwards of your spine. So when I was a kid, it was 90 degrees before I had the surgery. So essentially if I laid on my stomach on the floor, I looked like the Harbour [00:09:00] Bridge, that's how curved I was. And then I have severe scoliosis. So scoliosis is the curve sidewards of your spine and it can go inwards as well.

And then I've got arachnoid cysts, which are bags of fluid that put pressure on your spine. And I've got a dozen in my lower back and then I've got one in my neck. So, all the surgeries were essentially to just straighten me out, but also to try and remove and eliminate the cysts. But every single time they could remove the cysts, for example, it worked…But after each surgery, the coming back and being blocked was getting a shorter and shorter time frame. And then eventually it was just like, this is not going to work. 

Kirsty: Fourteen is a pretty tricky time in life, generally. You're becoming a teenager and trying to get a level of independence for yourself.

And there's this whole search for identity that happens [00:10:00] around about that time. What was it like to then throw into the mix needing to use a wheelchair? 

Mel: Like it wasn't easy, but I think I knew in my head that it was happening. So I'd already come to terms with it before it actually happened. But I think the hardest part for me wasn't ending up in a wheelchair, it was just that I lost a lot of friends.

I went from walking to being in a chair and being like a 14-year-old girl, like it doesn't necessarily fit the image when you're like trying to attract the opposite sex and all that sort of stuff. So I think that was probably the hardest bit for me, was that I lost a lot of friends because of it, even though the only thing that really changed was that I went from walking to not walking.

Kirsty: You've also written about and spoken about how when you were older, I think maybe you were in your 20s, you were also diagnosed with hearing loss. Is that [00:11:00] right? 

Mel: Yep, so I have a significant hearing impairment, so I'm profoundly deaf in one ear and severely deaf in the other ear. That's got to do with the syndrome that I've recently been diagnosed with as well.

So it all makes sense. 

Mel: I wear hearing aids for that. The actual hearing is pretty much perfect, it's just the fact that I've got the bones through my ears in front of my eardrums are all twisted. And they're stopping the sound from reaching my eardrum. And that's why I have a hearing impairment.

So it's similar to why I can't walk, I've got the blockages of the cysts putting pressure, but not like a severed spinal cord or anything like that. 

Kirsty: I'm curious about, so you lost the ability to walk and you also lost the ability to hear without those assistive devices. Did you struggle with one of those more than [00:12:00] the other?

Mel: Yeah, I think I struggled with the hearing. A lot more, to be honest. So for a long time I couldn't hear properly and I was just struggling to read lips and be part of conversations, et cetera. And the only reason I actually went and got my ears properly tested was because I was working at a place and every week we had a team meeting and we rotated between doing the minutes and the agenda. And I obviously couldn't do the minutes because if I did the minutes, I'd have to be like looking down writing, not seeing everybody's face to be able to read their lips. So I made every excuse possible to not do the minutes. And eventually my manager pulled me into her office and said, what's going on? Because I know that you're not going to just not do something. What's happening?[00:13:00] 

And that's when I told her I can't hear. So I went and got my ears tested and I went with a really good mate of mine and I got really upset and I was like, I’m going to have to wear hearing aids. In my head, and this is my own bias, it's like, it's only old people that wear hearing aids, it's not anybody that's young.

My mate just started laughing at me, and I was like, why are you laughing? And he said - you're worried about hearing aids, but you've got wheels hanging off you. And I was like, good point. That's obviously something that people can see, that doesn't bother you. But you're worried about that. 

But it took me a while to realise it was also around the communication. It’s huge. If you can’t communicate, or people don't listen to you or you don't feel involved because you can't be part of that conversation. It's bigger. And it's the thing that I always say to people; I could sit there [00:14:00] in a training room and deliver a training and sit in another chair and someone could take my wheelchair away from me, and I can still do my job, I can still have conversations with people. But I can have my wheelchair, and you take my hearing aids away from me, and I'm not going to be able to do it. Because I'm not going to be able to have those conversations with people. 

So it's interesting, even in itself, the assumptions that people with disability make about disability, but then people without disability make about disability.

So I need the wheelchair. I need the hearing aids. But one holds more importance to me in a lot of ways. Communicating is what everybody wants to do in whatever way or shape or form that is. And I think just recognising the value and the importance and just the strength [00:15:00] that people can gain if they're able to have a voice in whatever way that is, whether it's verbal or non-verbal.

Kirsty: Yep, absolutely. I think that's something that would surprise a lot of people - that you found it harder to deal with the loss of hearing than loss of ability to walk. But the way that you've described it, it makes so much sense. Yeah. Just the barriers to inclusion that come from not being able to communicate are enormous, aren't they?

Kirsty: Mel, I've heard you say before that you don't like labels and that you don't necessarily see yourself as a person with disability.

Can you talk us through why that is? 

Mel: Yeah, so I guess I don't like labels and probably part of it is because I've never been diagnosed with anything until recently. So I never really had a label. But my main reason I don't like labels is that I find labels can often segregate us and put us into little boxes.

[00:19:00] And I really like the idea that when we're thinking about disability, that it's not about looking at the person's diagnosis of what they are, but more about what they actually need. To be able to function in the world. And to be part of the environment, et cetera. 

And I just think that labels sometimes can put that barrier up for people. Whereas if we're just looking at people as being people and then with whatever their needs are for them to be able to like function in society. That's just how I like to function. I am well aware that a lot of people like labels because it helps them feel an identity, etc.

So, and that's completely fine as well. So I think it's just about working with how the individual is and how the individual wants to work. But ultimately [00:20:00] at the end of the day, for me, it's like, I don't see people as having a disability. I just see them as, well, they may need this communication device, or they may need longer to do X, Y, or Z, or they need this physical access to something.

Kirsty: That is very well said, that makes a lot of sense. 

Now, Mel, you have recently participated in a car rally. I think Colin's quite excited about this part of the interview. 

Colin: Now, are you being picking on my car enthusiasm? 

Kirsty: I'm just saying you like cars. I don't like cars, you do. 

Colin: I find that just ridiculous.

Kirsty: So the car rally, I don't, can we say the name of it on this podcast?

Mel: The Shit-box Rally. 

Kirsty: There you go. Well, you've done it. Well done. So you took part in this rally. Can you tell us a bit about what it is? 

Mel: Yeah, so I've done it twice now. So I did the first one last year from Mackay to Darwin. [00:21:00] And that was the very first rally where a person in a wheelchair driving with hand controls had ever taken part, over the 13 years.

Kirsty: Amazing. 

Mel: That was the first time I got to do it, which was pretty exciting and yeah, it was absolutely amazing. 

So essentially the Shit-box Rally is raising money for Cancer Council. And by doing that, everybody that participates in it has to drive a car that's worth less than $1,500. It can only be a two-wheel drive. And it's going across the outback; so up to 80 percent unsealed roads. And you drive and you camp in a different location every night, and you work in teams. So you get put into different buddy groups. So there'll be like seven to eight cars in each of your buddy groups. And essentially the moral of it is that [00:22:00] it's not a race. It's making sure that you're all across the line at the end together as a team.

And some of these days can be like 12 hours on the road. And then, you know, you've already packed up in the morning, doing 12 hours on the road, getting to your next campsite, having to re-set up your tents, et cetera, for the night. Long, long days. 

So that was last year. This year, we went from Port Douglas to Adelaide. So it was two different places. Two different teams, experiences, and my car made it to the end. 

So I'm driving a really good friend of mine’s old taxi. So he sold his old taxi to me that had 950,000 kilometers on it. And so we did the first rally, made it pretty easily. And then this rally, it struggled a [00:23:00] lot, but we got across the line.

Now the car won't start at all. 

Colin: To help you drive it, there was some pretty cool modifications made. And I was really interested in the satellite controlled… Oh, I can't remember what it was called. So anyone, these are things that anybody could use on their vehicle?

Mel: Absolutely. So Total Ability - they're based in Sydney, but people can get them put on their car anywhere in Australia - and they sponsored me to put them on my car. Because I drive with them in my everyday car. Which was really exciting because the first rally I did, there was a gentleman, Chris, who was newly with spinal injury, and he was watching the rally, and he did the rally like four months after me, using the same [00:24:00] controls, etc.

So, it showed that it could be done, which was really good. If I'm going to do it, I actually want to drive. I like driving, and I want to experience the actual rally. Like driving off road and going through mud pools and river crossings and -  

Colin: Sounds pretty cool to me I could do that. 

Mel: Oh, it was pretty cool.

It was, yeah, super cool, like, when you're driving along and you've got your mate hanging out the window, throwing water on the windscreen so you can still see out the window. 

Kirsty: Oh my goodness.

Colin: I can see you doing that, Kirsty.

Kirsty: I, no.

Colin: Hanging out the window, throwing a bucket of water on the windscreen. 

Kirsty: Look, I'm not interested in cars. I know nothing about cars, but even I know that most people who drive these outback road trails and these parts of Australia, they have hundred thousand dollar vehicles and off road trailers and all the bells and whistles. Were there any scary moments? Did you just get stuck in Wolf Creek country at any point?

Mel: We got bogged, like on this trip, we got [00:25:00] bogged at one point. And we had to get the forklift to pull us out. That was, that was fun. No, not scary. I think it's just, obviously you're not driving cars that are designed to do off road, so you've got to be careful. But that's where you're all looking out for each other.

Kirsty: We should also say this rally has actually raised more than $41 million for the Cancer Council. I thought that was a typo when I first read it, but $41 million they've raised for Cancer Council. 

Mel: Well, the rally that we just did raised two and a half million. 

Kirsty: What a huge contribution. Yeah, just an amazing thing to be part of.

But Mel, you seem to really enjoy pushing yourself. You don't seem like someone who ever opts to take the easy way. What other things have you done, like travel and adventure wise that have really challenged you? 

Mel: Well, I've travelled a lot, but I think the couple things that I've done is I've sailed the [00:26:00] tall ship Tenacious twice.

Colin: That I could do. 

Mel: Yeah, so I've sailed that from Tasmania to Sydney and also in 2019, right before COVID happened, I did the World Tall Ship Race from Holland.

Colin: Oh, wow. That would be so cool. 

Mel: Yeah, we came third, which was pretty cool, and I was on the helm as we crossed the line, which is pretty cool.

Kirsty: Mel, you and I could not travel together. Like, boats and cars and I'm just out. I'm not interested at all. But Colin is very excited. 

Colin: I’ve got to start hanging around with Mel. Jeepers.

Mel: Oh, don't worry. I have friends that are like, is that a cruise ship? And I'm like, yeah, no. 

Colin: I'd love to. I love sailing. I love sailing.

Mel: I love it too. It's one of my favourite things.

And last year when I got to the top of Mount Kosciuszko, which was [00:27:00] pretty exciting. And we also last year did the half marathon up Mount Wellington in Tasmania. Hardest road half marathon in the world, because it's like, it's just uphill. So, we did that, and that was one that I actually did want to die.

And I was like, I was pretty, I don't think I'd do that one again. But yeah, no, I like doing, I like pushing limits, but I think it's not just me pushing it. I just, I like it when other people can see that it can happen for other people. And a lot of people think when they see someone, like in a wheelchair that is really active and involved and fit… They're normally quite, like, big, quite like that Paralympian kind of look. And then they see me and I'm quite little and I'm a female in a chair and don't look like I'm that strong. So I think that really challenges [00:28:00] a lot of perceptions. It helps the everyday person that has a disability to go - Yeah, we could.

I think it's just about going well, we all should have options and it should be about that choice and control of deciding what you want to do. And with the right supports then you can do things just as anybody can. 

Kirsty: Mel, last question. You've said that you always believe that the best way to change people's perception about disability is to have it placed right in front of them.

What do you mean by that, and how do we do it? 

Mel: That's literally not hiding anybody that has a disability. So, making sure that we're all seeing, we're all hearing everybody that has a disability. Not making allowances for that either. Just, everybody just being together in whatever environment that is, I think is really important.

So, I think we've, a lot of us have grown up in that whole medical model. And the whole medical model being that if you have a disability, we don't want to see you, we don't want to hear you. But now that we're being seen and we're being heard, things change. People acknowledge things differently.

Yeah, it's not perfect and it's not going to be perfect for a long time and may never be. But that's also human nature as well. So I think it's just the more exposure that you have of disability and all different types of disability, the better it is for everybody. Because people just grow up with it, and they just go, oh yeah, that's just it, that's just normal.

Kirsty: Yeah, so that exposure and just normalisation of it is so important.

Mel: Absolutely. 

Kirsty: Mel, you have been amazing. Thank you so much. 

Mel: Thank you. 

Kirsty: Thank you for fitting us in this morning. We have loved talking to you. We will put links to Mel's blog. She's super, super busy, but definitely worthwhile getting along to anything that she is running or involved with. 

Thanks for being here Mel and we'll catch you next time on Enabled.