In this episode, Julie Jones talks about the creation of Have Wheelchair Will Travel and how it has become a valuable resource for disabled travellers. She shares personal stories of travelling with her son Braeden, who also makes an appearance in the episode. Peta explains why it was so important to include Braeden’s voice, highlighting the significance of representing non-verbal individuals in discussions about accessibility.
Together, Peta and Julie explore how travel can enhance connection, even when verbal communication is limited, and stress the importance of accessibility and inclusivity in the tourism industry.
Connect With Julie:
Have Wheelchair Will Travel: https://havewheelchairwilltravel.net
Travel Magazine: https://travelwithoutlimits.com.au
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:03] Hello and welcome to the I Can't Stand podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week I have Julie Jones and Braeden Jones. If you don't know, Julie created an amazing resource for disabled people called have wheelchair will travel. I have been using this resource for quite a few years, so I am absolutely thrilled to have this conversation for you on the podcast. We spoke about travel, of course, inaccessibility of travel and what Brighton's access needs are like. We also spoke about what life is like when someone is non-verbal and how travel can foster connection. I hope you enjoy this episode. I certainly did. So without any further ado, let's get into it.
Julie [00:01:16] I'm Julie, and I am a proud mother to Braydon. He lives with cerebral palsy and is a wheelchair user and also my daughter, Amelia. I love to travel. My background is as a travel consultant and I now have the blog, have Wheelchair will Travel, and I also am the editor of Travel Without Limits magazine.
Peta [00:01:37] Which is a fantastic racehorse that is famous within the disability community, at least for me. I always refer to work quite often, so it's such a thrill to talk to you today. Julie. How did Have Wheelchair Will Travel come about?
Julie [00:01:53] So I have a wheelchair. Will Travel came back after we did a trip to the US and when I was trying to research the trip, I just couldn't find anything about wheelchair accessibility. And I kept saying to my husband, We can't be the first people to do this. But that was how it felt. It felt like we were sort of, you know, some kind of explorers doing the trip. And when we came back and done as much research as I could and we had a fantastic time and I really just wanted to make it easy for other people to travel.
Peta [00:02:26] And what year was that?
Julie [00:02:27] That was 2012.
Peta [00:02:31] Right. Okay. Yeah. It's it's so funny to think back. I mean, it's not that long ago, really. It was. And still remains to be quite a challenging thing to gain the information. I don't think nondisabled people would realise how difficult it is. But it remains to be super difficult, at least from my perspective. And I'm I'm quite keen to hear your perspective. What sort of things frustrate you the most still today?
Julie [00:03:01] Still, it's the lack of information and the lack of detailed information. That's probably the most important thing because places will say we're accessible or wheelchair friendly or, you know, we have accessibility. What does that mean? Because no two people with a disability have the same requirement. So even two wheelchair users may have different requirements. So things have improved. I won't say that things are as bad as they were back in 2012 and before that when we were travelling with Brighton. But there definitely needs to be a big shift in the amount of information and understanding about what information is useful to people travelling with a disability.
Peta [00:03:42] And it's such a big undertaking to create a website like you did. Julie Like it's one thing to try and find information for yourself, but also have that knowledge, but also that confidence to be the resource for people and making sure the information is correct. And rich, obviously you have a background in this area, but how did you even begin? Did you have certain contacts in the industry that you could refer to? How did you do it?
Julie [00:04:12] Well, really, it was very much just sharing our experiences, travelling with Brighton, and that's how it started. And it was just us on a page when we went somewhere and we would share it, whether it was in Sydney for a day trip or whether it was further afield. We just shared that. I've learnt about the various names people have and I've tried to incorporate that and tweak the information I provide. So originally I would just maybe put photos and say that some of it was accessible, whereas now I put measurements from the bed height and the door weights and things like that, and then over time a something, well, a video tool would be even better because you I do a walk through people now, it's not some tricky video that some hotel has done that makes everything look bigger and broader or anything. It's just me walking through and saying, Hey, this is what it's like.
Peta [00:05:04] When did you first start to realise how difficult it is to travel when somebody has a disability as much as travel? And I'll only speak for myself, but travel is all about freedom for me and spontaneity. But that is in direct contradiction to having a disability at times like I'm a total over planner. It took me two years to plan my last overseas trip, and as much as I would love to be that spontaneous person that says, Hey, there's a deal to go to other night x Bali this weekend, let's go. It's just not going to happen for me. So I'd love to hear your perspective.
Julie [00:05:46] Well, I would agree wholeheartedly that every ad or any sort of maybe see around travel makes it seem like this fraying, wonderful experience where you sort of let go of all the daily shackles. And I think, like you say, it's it's not that at all. As soon as they sort of said he would need a wheelchair to get around, I knew that life was going to change dramatically. So up until he was seven, we're able to carrying him in the back area. And well, when I say way, that's the royal way. My husband was actually the one that was schlepping around with Brighton on his back. And as soon as we had to hang up that back carrier because brain was getting too heavy, that was when life became much more difficult. Researching trips to the Instacart became part of our planning.
Peta [00:06:38] How has your perception changed in as far as what you thought life would be travelling with Brian and in his wheelchair and what it is like now that you're well-travelled and you've travelled as a family many times.
Julie [00:06:53] I think for us, travel still gives us exactly what I'd always hoped it would give us. So it gives us that bonding. It gives us shared experiences. It really strengthens us as a family. But I think the reality is it's really hard. Really hard every I think everything apart from the fact that sometimes you get skip the line, everything does take a lot longer from the planning process to the actual carrying out the activities. If we go somewhere and it's a road trip and you getting in and out of the car, it's not just a matter of everyone hopping out of the door of the car. It's the fact that Brian needs to his wheelchair needs to come out of the car and then he needs to transfer into the wheelchair. And then the reverse process needs to happen. So there's definitely a lot to consider.
Peta [00:07:42] I am really conscious that Brighton isn't sitting here today in this conversation. It's the first episode that I have not directly interviewed the person with a disability because I never want to speak for someone that can't be here today and share their experiences. But I'm thrilled to say that you have pre-recorded an answer from Brighton today. Can you talk first to give the audience some context regarding Brighton's access needs and how he best communicates?
Julie [00:08:18] Of course. Now, the reason writing it's not here today is part of the reason that I have wheelchair will travel with started, which is because Brandon does not like being at home. He loves his home and he loves his family. But Brendan likes to be on the go constantly. So have wheelchair will travel in many ways was started just simply because were out and about all the time. Every way came we were doing things. And similarly, now that he has left school, he is out and about every single day. Brendan's name's he's a wheelchair user, he's non-verbal. He needs help with all his daily living needs. So bathing, toileting, all those sorts of things he needs assistance with. He's incredibly social, so although he's non-verbal, he gets a lot out of travel because people are much more open to communicating with him. When you're having shared experiences, people tend to be chatty because they know want to chat to him about this. Suddenly being non-verbal is less of a barrier for him. And he just he embraces every opportunity he gets when he travels, which we love.
Peta [00:09:26] Voice being conscious that I don't feel I've been able to properly reflect the experience of people who are non-verbal. So I really value your Brighton's perspective, of course, but also your perspective. Julie and I never thought about how travel in itself could aid better communication and better connection for someone like Brighton. That's super interesting.
Julie [00:09:52] Yes, for him, I think travel is it's like a breakthrough with being nonverbal and, you know, you feel if you can imagine you are on a whale watching trip in a while. Branch is in front. Everyone's experiencing exactly the same thing. So when he accidentally vocalises people know when he's vocalising about and they feel similarly and they're so excited that they want to then share that with him and he wants to share it back. So it's a really beautiful way of sharing those experiences. And even it's been like when you're in another country and people are speaking in the other language, but you're also sharing a similar experience, suddenly the language barrier is is less. It's still there, but it's just a little bit less, which is the lovely part about travel. And I think it's why we all seek it out for all those, you know, really special opportunities.
Peta [00:10:43] That is so beautifully expressed. I wholeheartedly agree with you in that vein, I'd love to hear from Brian in where he likes to travel and likes to visit and where his favourite places are.
Julie [00:10:57] Well, he is sharing with you what he likes about travel, so Brian pretty much likes travelling anyway. He really likes any kind of experiences he can have when he's travelling. Say he's done cable, hang gliding in Tasmania, he's done jet skiing on the Gold Coast. He's read the in helicopters and buggies and quad bikes in Fiji. He's done all sorts of things, but he does a pre-school program where he talks to the children through his device about what he likes about travel. And this is what he said.
Braeden [00:11:38] I like spending time with my family and meeting people when I travel.
Julie [00:11:44] So he has photos that he shows the children of him travelling. And I guess that's a really nice way of him expressing to them that he yes, he has a disability and it's quite obvious to them that he's sitting there in a wheelchair and he's not using his voice, but he has all these photos of him doing things that potentially the children would have an idea that he wouldn't be able to do or may have a preconception about. So he really likes sharing both the photos and using his device to share with them what he he likes.
Peta [00:12:20] So when you're planning your next trip, what sort of access needs do you have to keep in mind? Obviously I understand to a point because I also need personal care when I'm away from home. In particular, I'm super reliant on my parents. We have to take a portable hoist, for example. So I'd be really keen to hear about your family's experience.
Julie [00:12:43] So we travel. We couldn't find anything on the market that city Brian's toileting needs. So he has like a stand alone mine chair at home that we had to design and come up with something ourselves. So we've done that. And so we carry that in a suitcase. So that nearly takes that one suitcase by itself. But that just gives us I didn't want life to be limited by a toilet. And we have to have a car that's big enough wherever we go. So often we'll book our trip in reverse. So we'll book the car first. Because if we can't get the right car hire, we can't travel to a destination. So somewhere like, say, Cairns or Uluru. And four wheel drives are very popular in general. We have to make sure that we can get something that will suit and needs. And you know, for Brighton, it's just really a case of making sure that there's activities he can do. There's no point in going somewhere and him being excluded. So if Brendan can't do it, the whole family doesn't do it. So sometimes we'll split and the boys might do something. My husband and Brendan might do something that particularly interests them and the girls might split. But we do like to share activities that we can do. So we put a lot of research into contacting tour operators and seeing if they're happy for us to give something a try, because we know that just sometimes trying is the most important thing.
Peta [00:14:06] And I think that really beautifully expresses how different disabled tourism is. I did a master's degree in tourism, Julian, though, talking about the process of somebody picking a destination, how how tourists fix a destination. And for disabled people, we often do it backwards because we pick the transport first or we pick the activities first, and that dictates where we go. It's not necessarily based purely on destination. We'll go wherever the access is.
Julie [00:14:41] That's right. And also where the information is, because I always say to destinations, if you actually provide information on your home page and it's easy for me to find, it's like rolling out a welcome mat to our family. We immediately think that you've thought of people who have access needs. And it makes my life so much easier and so also more likely to pick your destination over another one where I can't find any information about what we can do that.
Peta [00:15:06] I think one of the things that really frustrates me the most and still shocks me that it's still the case is the fact that there are no images or hotels don't list the fact they have accessible rooms on their website. I'm still finding myself emailing or calling the hotel directly, confirming that they do have an accessible room, first of all. And secondly, requesting photos because for some reason where the demographic that requires the most information and yet we're lucky if we get one photo of an accessible room. Why do you think that is?
Julie [00:15:50] Well, I don't know, but I've been on the high horse about this exact topic recently. They all do photoshoots because they have galleries on their website, so it's not that hard. And it's actually counterintuitive that if they don't take a photo of the accessible group. But unfortunately, I think we are still dealing with the fact that the tourism industry does not see disability. It doesn't fit into this sort of sexy, slick imagery and it doesn't, you know, grab browse apparently must be offensive to some because, you know, we don't get those photos of rooms that realistically, if they design them beautifully in like every other room, it shouldn't be a problem. And so many people require those facilities. It's not just people, you know, who are wheelchair users or who have limited mobility because of a disability. A lot of elderly people need to have those facilities as well. So I think there's a lack of understanding. And I think that there's still the perception that it's a niche market. And I'm, you know, talk myself blue telling people when in find struggling to live with a disability. And that's I mean the people that identify as living with disability a lot of elderly people that have the same needs wouldn't identify and that 1 in 5. So it's not niche and we just need to all get on board with it, really.
Peta [00:17:12] I often feel like I've been hitting my head against a brick wall on those very topics for a few years now. Julie So I am 100% with you. And I would also like to add that disabled people in general travel with other people as well. So we're a big economic market that's just not being considered, which is just so frustrating and mind blowing and frankly idealist. And also, I don't know whether you agree. Like, I just think it's such a waste of time that I'm having to email people not only for myself, but for the hotels, because surely they must get these questions on a fairly regular basis. It would be just so easy to have a quick landing page on a website and it would be, you know, reduce all those many hours.
Julie [00:18:05] No, I agree 100%. And as I said recently when I was on a panel talking to small hoteliers, I saying if I asked you, would you turn away business? I'm sure most of you would say no, you would welcome new business. So why would you turn away a segment of the tourism market that you could capture if you have the information and the photos on your website?
Peta [00:18:27] So what sort of destinations are you hoping to be able to visit in the future that you currently don't think is possible for And.
Julie [00:18:39] I think probably one of the largest problems at the moment. We can overcome a lot of access challenges. But as my husband and I get older, I'm conscious that that we will choose easier options. So at the moment, I think we're trying to work out one of the destinations that will be much harder as we get less physically able to give Brighton access to. But I also think that long haul flights are a big problem for Brighton. So as much as we would love to take him somewhere like Europe, it would have there would have to be something there that he would really, really get a lot out of because the amount of effort that it would take for us to do it and also for him physically, it would just be quite challenging for him to be in that upright position on an aeroplane for such a long time. And the discomfort that's, you know, most of us find it really uncomfortable. But for an on the go guy who doesn't sleep so well upfront, it's a real challenge for him. So that's that's probably one of the biggest barriers at the moment.
Peta [00:19:42] I know a few of the listeners listening today will be saying to me in the background, Peter, please ask about the new airline seat that they're saying that we might be able to remain in our wheelchair. What do you feel about that? Julie How do you think that would work not only for Brandon but for other people that use your website and your information?
Julie [00:20:05] Well, it's certainly been a hot topic. So at the moment it's a concept and it's being looked at by the airlines. I think we're really long way off and love to say that. I think it's closer than it is then unless we have new flights. It's not going to be possible. Like I can't see it happening on like retrofitting older aircrafts because you have the issue of you coming to the aircraft and there's the galley and then you have a very tight turn. Well, I think I just can't see that happening at the moment. And the concept at the moment is only for wheelchair users. So there are a lot of manual wheelchair users that have very complex seating needs that also need that. So I'm not quite sure what the logic is behind only having it for power wheelchair users. So I think it's fantastic that there's a good discussion happening about it. I think that the whole Wheels Up movement, which is located in the US, is doing some really good work and advocating for happiness. And really honeybunch, people are really trying hard, but I just I'm just not sure how soon it will be. And that's the problem. I don't like. You know, people get very excited when they see it and, you know, being shown in these videos. But I just think it's a way of yet.
Peta [00:21:29] And of course there's also other transport options. We tend to focus on cars and planes because those are the most common uses. But of course, we also have trains and we also have cruise ships. Have you ever experienced that with Brighton and what was that like?
Julie [00:21:49] We haven't been on a cruise with him, but I have been fortunate enough to be invited on cruise ships to actually check out the accessible accommodation. And I can certainly see why it is such a popular choice for people because they can take what they need on board without luggage allowances. They don't have to get on and they will have to get on the cruise ship. They can take their hoists, some of them higher electric beds. So height adjustable beds and have those put on the cruise ship. There are medical facilities on board, which is sort of comforting as well. I think the biggest issue with cruise ships is that out of Australia, a lot of the ports are not accessible, so they're only accessible if you can transfer on the tender. So the New Zealand trips are very popular because a lot of the shore excursions are accessible to people. But we're so far away from everything here that apart from the Pacific Islands, there's sort of not as many choices unless you're going to cruise to, say, Hawaii or somewhere like that. And rail miles be problematic, too. People really aren't keen to do rail travel. And unfortunately, because the historic nature of the trains, people need to be able to transfer into the train's wheelchair to get to the dining car. Otherwise they need to dine in their own room. So a lot of people do do it, but they do need to be able to transfer things in that wheelchairs. So in each in each area of transportation, there are still challenges for those that are of the highest needs.
Peta [00:23:26] And you did you had mentioned before that you're factoring in that of course we will all age. And it's something that I think about a lot. Every trip that I do with my parents, I think of will this be maybe our last overseas trip or will we not travel in the next couple of years together as a family? And of course, that's always such a grief for a disabled person and and people who have disabled family members. It really is a marked change because we rely so much on other people.
Julie [00:24:03] I know and I recently created a list for Britain, the things that because of our anxiousness and because of the limitations around support workers and organisations, I'm really conscious and a little sort of panicked, I guess, over wanting to give him every experience I can possibly give him while my husband Mark and I are able to do it. And I wish it wasn't like that, but it it is a real sense of urgency to sort of pack into his lifetime as many experiences as I possibly can, because I really want his life to be as rich and vibrant as he is. Like he's just such a vibrant personality and just has such a thirst for adventure that I really want him to have all those experiences. But I think we have learned we've done a couple of trips where we've ever had a support worker at our destination, and we have one trip where we took a support worker with us because Brighton, as I've said before many times, he's very on the go. So lingering over a long meal is not his being. Whereas my husband and I and getting to the point where we're kind of like, we would like to do this with the other experience. So if you have a support worker or somebody who can fit in well with your family, I think that's a really nice way to go. Or if you can hire with confidence somebody you destination, that's really nice as well.
Peta [00:25:25] And if there was one thing that you could make non-disabled, particularly tourism industry based people better understand about travelling with disability, what would it be, truly?
Julie [00:25:38] Well, first of all, I'd like to say to them, I always like to appeal to people from the perspective of if you enjoyed travel, imagine if it became harder for you. Wouldn't you hope that people put the effort in to make it possible for you, whether it was for you or your loved ones suddenly became disabled? So I just think if people thought in those terms, I'd be far more inclined to just think, yes, of course, I wouldn't want my daughter to miss that. Of course I wouldn't want my wife or I wouldn't want to. Me, I love the tourism industry. But I think information is key. Providing information, putting it front and centre. Don't hide it somewhere. Understand that this is a missed opportunity. You know, you wouldn't say no to any other business, so why not embrace this business?
Peta [00:26:30] Thank you for listening to this week's episode. I hope you enjoyed it. If you did, can you please leave writing in review on whatever platform you listen on or share it with a friend? I really appreciate it. Thank you so much, Julie, for your time. I loved talking to you and thank you for what you do for the disability community. Thank you all for listening. And then till next week. Have a good one, guys. Bye. I would like to respectfully acknowledge Wurundjeri people and Bunurong people of the Kulin Nation, of which I record the podcast today. And I pay my respects to both elders past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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