October 21, 2024 • 27 mins
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 via assistive technology.
Together, Peta and Julie explore how travel can enhance connection 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
Instagram: https://www.instagram.com/havewheelchairwilltravel/
Facebook: https://www.facebook.com/HaveWheelchairWillTravel/?_rdr
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:https://www.icantstandpodcast.com
See omnystudio.com/listener for privacy information.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering your questions and what life is like and
you have a disability. My name is Peter, I have
cerebral palsy, and I'm your host. This week, I have
Julie Jones and Braiden Jones. If you don't know, Julie
(00:26):
created an amazing resource for disabled people called Have Wheelchair
Bull Travel. I have been using this resource for quite
a few years, so I'm absolutely thrilled to have this
conversation for you. On the podcast, we spoke about travel
of course, inaccessibility of Trouble and what Braden's access needs
(00:49):
are like. We also spoke about what life is like
when someone is nonverbal and how travel can foster connection.
I hope you enjoyed this episode. I certainly did so.
Without any further ado, let's get into it.
Speaker 2 (01:16):
I'm Julie and I am proud mother to Brandon, who
lives with cerebral palsy and is a wheelchair user, and
also my daughter Emilia. I love 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 Trouble Without Limits.
Speaker 1 (01:35):
Magazine, which is a fantastic resource that is famous within
the disability community, at least for me. I always refer
to it quite often. So it's such a thrill to
talk to you today, Julie. How did have Wheelchair Will
Travel come about? So?
Speaker 2 (01:54):
Have 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 explorer is doing the trip.
(02:17):
And when we came back, I'd done as much research
as I could and we had a fantastic time, and
I really just wanted to make it easier for other
people to travel.
Speaker 1 (02:26):
And what year was that?
Speaker 2 (02:28):
That was twenty twelve.
Speaker 1 (02:31):
Right, Okay, Yeah, 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 non disabled people would realize how difficult
it is, but it remains to be super difficult, at
(02:52):
least from my perspective, and I'm keen to hear your perspective.
What sort of things frustrate you the most still today?
Speaker 2 (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 we're wheelchair friendly, or you know,
we have accessibility, but 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
(03:24):
have improved. I won't say that things are as bad
as they were back in twenty twelve and before that
when we were traveling with Brandon, but there definitely needs
to be a big shift in the amount of information
and understanding about what information is useful to people traveling
with a disability.
Speaker 1 (03:42):
And it's such a big undertaking to create a website
like you did, druly like it was 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,
which obviously you have a background in this area, but
(04:04):
how did you even begin. Did you have certain contacts
in the industry that you could refer to, How did
you do it well.
Speaker 2 (04:12):
Really, it was very much just sharing our experiences traveling
with Breton. That's how it started, and it was just
us on a page. When we went somewhere, we would
share it. Whether it was in Sydney for a day
trip or whether it was further afield. We just share that.
I've learned about the various needs people have, and I've
tried to incorporate that and tweak the information I provide.
(04:33):
So originally I would just maybe put photos and say
that somewhere was accessible, whereas now I put measurements for
the bed height and the door width and things like that.
And then over time I started to think all a
video tool would be even better because if I do
a walk through, people know, it's not some tricky video
(04:53):
that some hotel has done that you know, makes everything
look bigger and broader or anything. It's just walking through
and saying, hey, this is what it's like.
Speaker 1 (05:04):
When did you first start to realize 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 overplanner. It took me two years
(05:27):
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, I don't know x
BALI this weekend, let's go, it's just not going to
happen for me. So I'd love to hear your perspective.
Speaker 2 (05:46):
Well, I would agree, agree wholeheartedly that every ad or
any sort of media see around travel makes it seem
like this freeing, wonderful experience where you sort of let
go of all the daily shackles, and I think, like
you say, 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.
(06:11):
So up until he was seven, we're able to carry
him in a back carrier. And well, when I say we,
that's royal we. My husband was actually the one that
was slepping around with Braiden on his back. And as
soon as we had to hang up that back carrier
because Brandon was getting too heavy, that was when life
became much more difficult. Researching trips to the Instagram became
(06:35):
part of our planning.
Speaker 1 (06:38):
How has your perception changed in as far as what
you thought life would be traveling with Branden in his
wheelchair and what it is like now that you're well
troubled and you've traveled as a family many times.
Speaker 2 (06:53):
I think faust 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. I think everything, apart from
the fact that sometimes you get skipped the line, everything
(07:15):
does take us longer, from the planning process to the
actual carrying out the activities. If we go somewhere and
it's a road trip and you're getting in and out
of the car, it's not just a matter of everyone
hopping out at their door of the car. It's the
fact that Branden 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.
(07:37):
So there's definitely a lot to consider.
Speaker 1 (07:42):
I am really conscious that Branden isn't sitting here today
in this conversation. It's the first episode that I have
not directly interviewed the person with their 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
(08:04):
that you have prerecorded an answer from Brandon today. Can
you talk first to give the audience some context regarding
Braden's access needs and how he best communicates.
Speaker 2 (08:18):
Of course, now, the reason Branden is not here today
is part of the reason that Have Wheelchair Will Travel
was started, which is because Branden does not like being
at home. He loves his home and he loves his family,
but Brandon likes to be on the go constantly. So
Have Wheelchair Will Travel in many ways, we started just
simply because we're out and about all the time. Every
(08:39):
weekend we were doing things, and similarly, now that he
has left school, he is out and about every single day.
Brendan needs he's a wheelchair user, he's nonverbal. 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 is nonverbal, he gets a
(09:02):
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 what to chat
to him about. This suddenly being nonverbal is less of
a barrier for him, and he just, yeah, he embraces
every opportunity he gets when he travels, which we love.
Speaker 1 (09:26):
I've always been conscious that I don't feel I've been
able to properly reflect the experience of people who are nonverbal.
So I really value your Braiden'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
(09:49):
for someone like Braiden. That's super interesting.
Speaker 2 (09:52):
Yes, for him, I think travel is it's like a
breakthrough with being nonverbal. It's, you know, if you can
imagine you are on a whale watching trip and a
whale breaches in front. Everyone's experiencing exactly the same thing.
So when he excitedly vocalizes, people know what he's vocalizing about,
and they feel similarly, and they're so excited that they
(10:15):
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 another language,
but you're also sharing a similar experience. Suddenly the language
barrier is less. It's still there, but it's just a
(10:35):
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.
Speaker 1 (10:44):
That is so beautifully expressed. I wholeheartedly agree with you
in that vein. I'd love to hear from Brandon in
where he likes to travel and likes to visit and
where his favorite places are.
Speaker 2 (10:57):
Ah Well, he is sharing with you you what he
likes about travel. So Braden pretty much likes traveling anywhere.
He really likes any kind of experiences he can have
when he's traveling. So he's done cable hang glining in Tasmania.
He's done jet skiing on the Gold Coast. He's ridden
(11:20):
in helicopters and buggies and quad bikes in Fiji. He's
done all sorts of things. But he does a preschool
program where he talks to the children through his device
about what he likes about travel. And this is what
he shared. I like spending time with my family and
(11:40):
meeting new people when I travel. So he has photos
that he shows the children of him traveling, and I
guess it'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
(12:02):
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 likes.
Speaker 1 (12:20):
So when you're planning your next trip, what sort of
access needs do you have to keep in mind?
Speaker 2 (12:25):
Those?
Speaker 1 (12:26):
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.
Speaker 2 (12:43):
So we travel, we couldn't find anything on the market
that suited Branden's toileting needs, so he has like a
standalone code chair at home, so we had to design
and come up with something ourselves. So we've done that
and so we carry that in a suitcase. Takes that
one suitcase by itself, but that just gives us. I
(13:05):
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 reverst,
so we'll book the car hire first, because if we
can't get the right car higher, we can't travel to
a destination, so somewhere like Sacans or Bullarou where full
wheel drives are very popular. In general, we have to
(13:26):
make sure that we can get something that will suit
our needs. And you know, for Braiden, it's just really
a case of making sure that there's activities he can do.
There's no point in us going somewhere and him being excluded.
So if Braiden 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 Braiden might do something that
(13:48):
particularly interests them, and the girls might split. But we
do like to have shared 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.
Speaker 1 (14:06):
And I think that really beautifully expresses how different disabled
tourism is. I did a master's degree in tourism druly,
and they were talking about the process of somebody picking
a destination, how a tourist picks a destination, and for
disabled people, we often do it backwards because we pick
(14:28):
the transport first, or we pick the activities first, and
that dictates where we go. It's not necessarily based purely
or destination. Will go wherever the access.
Speaker 2 (14:40):
Is that's right, and also where the information is, because
if I always say to destinations, if you actually provide
information on your homepage and it's easy for me to find,
it's like rolling out a welcome matt to our family.
We immediately think that you've thought of people who have
access needs and it makes my life so much easier.
So of course more likely to pick your destination over
(15:02):
another one where I can't find any information about what
we can do that.
Speaker 1 (15:06):
I think one of the things that really frustrate 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
(15:29):
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?
Speaker 2 (15:50):
Well, I don't know, but I've been on my high
horse about this exact topic recently. They all do photoshoots
because they have galleries on their websites, so it's not
that hard, and it's actually counterintuitive if they don't take
a photo of the accessible roup. But unfortunately, I think
we are still dealing with the fact that the tourism
(16:10):
industry does not see disability. It doesn't fit into their
sort of sexy, slick imagery, and it doesn't you know,
grab rails apparently must be offensive to some because you know,
we don't get those photos of rooms, But realistically, if
they design them beautifully and like every other room, it
shouldn't be a problem. And so many people require those facilities.
(16:33):
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, you know, taught myself blue telling people one
(16:55):
in five Australians live with a disability, and that's only
the people that identify as living with disability. A lot
of elderly people that have the same needs wouldn't identify
in that one in five, So it's not niche and
we just need to all get on board with it. Really.
Speaker 1 (17:12):
I often feel like I've been kidding my head against
a brick wall on those very topics for a few
years now, Julie. So I am one hundred percent 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
(17:34):
is just so frustrating and mind blowing and frankly ablest.
And also I don't know whether you agree, like I
just think it's such a waste of time. Then 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
(17:56):
to have a quick landing page on a website and
it would be you know, reduce all those man hours.
Speaker 2 (18:05):
No, I agree one hundred percent. And as I said recently,
when I was on a panel talking to small hotelians,
I'd said, 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?
Speaker 1 (18:28):
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 Brandon?
Speaker 2 (18:39):
Ah, I think probably one of our 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 what are the
destinations that will be much harder as we get less
physically able to give Bredon a access to. But I
(19:01):
also think that long haul flights are a big problem
for Brandon. 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 of the amount of
effort that it would take for us to do it,
and also for him physically, it would just be quite
(19:22):
challenging for him to be in that upright position on
never a playing for such a long time, and the
discomfort that's you know, most of us find it really uncomfortable,
but for an on thego guy who doesn't sleep so
well upright, it's a real challenge for him. So that's
that's probably one of our biggest barriers at the moment.
Speaker 1 (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, for other people that
use your website and your information.
Speaker 2 (20:05):
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 a really long way off. I'd love
to say that I think it's closer than it is.
Unless we have new fleets, it's not going to be possible.
Like I can't see it happening on like retrofitting older
(20:27):
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 power 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
(20:50):
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 All Wheels Up movement, which is located in the US,
is doing some really good work and advocating for it.
I think there's really hardy bunch of people that are
(21:12):
really trying hard. But I'm just not sure how soon
it will be. That's the problem. I don't. Let you know,
people get very excited when they see it, you know,
being shown in these videos, but I just think it's
a way off yet.
Speaker 1 (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 Brandon and what was that like?
Speaker 2 (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 accessful accommodation, and I can
certainly see why it's such a popular choice for people
because they can take what they need on board without
luggage allowances. They don't have to get out of their
wheelchair to get on the cruise ship. They can take
(22:10):
their hoists, some of them higher electric beds, so high
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
(22:30):
can transfer on a 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 rails be
(22:51):
problematic too. People really are 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
(23:12):
do do it, but they do need to be able
to transfer into the wheelchairs. So in each area of transportation,
there are still challenges for those that are of the
highest needs.
Speaker 1 (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, will this be
maybe our last overseas trip or will we not travel
in the next couple of years together as a family,
(23:47):
And of course that's always such a grief, but for
a disabled person and people who have disabled family members,
it really is a marked change because we rely so
much on other people.
Speaker 2 (24:03):
I know, and I recently created a list for Brandon
of things that because of OH and S and because
of the limitations around support workers and organizations. 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
(24:25):
do it. And I wish it wasn't like that, but
it is a real sense of almost 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
(24:46):
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 either had a support
worker at our destination, and we have one trip where
we took a support work with us because Braydon, as
I've said before many times, he's very on the go,
so lingering over a long meal is not his thing,
(25:08):
whereas my husband and I getting to the point where
we're kind of like, oh, well, we would like to
do this particular 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 your destination, that's
really nice as well.
Speaker 1 (25:25):
And if there was one thing that you could make
non disabled, particularly tourism industry, base people better understand about
traveling with disability, what would it be.
Speaker 2 (25:37):
Trually well, First of all, I'd like to say to them,
I always like to appeal to people from the perspective
of if you enjoy 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 one suddenly became disabled. So
I just think if people thought in those terms, they'd
(25:59):
be farm more inclined to just think yes, of course
I wouldn't want my daughter to miss out. Of course
I wouldn't want my wife or I wouldn't want to
miss out. I love the tourism industry, but I think
information is key. Providing information, putting it front and center,
don't hide it somewhere, Understand that this is a missed opportunity.
(26:22):
You know, you wouldn't say no to any other business,
so why not embrace this business?
Speaker 1 (26:31):
Thank you for listening to this week's episode. I hope
you enjoyed it. If you did, can you please leave
a rating and 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
(26:51):
for the disability community. Thank you all for listening, and
until next week, have a good one. Guys by I
would like to respectfully acknowledge they were wondery and bun
wrong people of the caul And Nation of which I
recall the podcast to day, and I pay my respects
(27:15):
to both elders past and present, along with and especially
to those in the first Nation's communities who are disabled themselves.
Hello, and welcome to the I Can't Stand Podcast. The
podcast answering your questions and what life is like and
you have a disability. My name is Peter, I have
cerebral palsy, and I'm your host. This week, I have
Julie Jones and Braiden Jones. If you don't know, Julie
(00:26):
created an amazing resource for disabled people called Have Wheelchair
Bull Travel. I have been using this resource for quite
a few years, so I'm absolutely thrilled to have this
conversation for you. On the podcast, we spoke about travel
of course, inaccessibility of Trouble and what Braden's access needs
(00:49):
are like. We also spoke about what life is like
when someone is nonverbal and how travel can foster connection.
I hope you enjoyed this episode. I certainly did so.
Without any further ado, let's get into it.
Speaker 2 (01:16):
I'm Julie and I am proud mother to Brandon, who
lives with cerebral palsy and is a wheelchair user, and
also my daughter Emilia. I love 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 Trouble Without Limits.
Speaker 1 (01:35):
Magazine, which is a fantastic resource that is famous within
the disability community, at least for me. I always refer
to it quite often. So it's such a thrill to
talk to you today, Julie. How did have Wheelchair Will
Travel come about? So?
Speaker 2 (01:54):
Have 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 explorer is doing the trip.
(02:17):
And when we came back, I'd done as much research
as I could and we had a fantastic time, and
I really just wanted to make it easier for other
people to travel.
Speaker 1 (02:26):
And what year was that?
Speaker 2 (02:28):
That was twenty twelve.
Speaker 1 (02:31):
Right, Okay, Yeah, 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 non disabled people would realize how difficult
it is, but it remains to be super difficult, at
(02:52):
least from my perspective, and I'm keen to hear your perspective.
What sort of things frustrate you the most still today?
Speaker 2 (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 we're wheelchair friendly, or you know,
we have accessibility, but 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
(03:24):
have improved. I won't say that things are as bad
as they were back in twenty twelve and before that
when we were traveling with Brandon, but there definitely needs
to be a big shift in the amount of information
and understanding about what information is useful to people traveling
with a disability.
Speaker 1 (03:42):
And it's such a big undertaking to create a website
like you did, druly like it was 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,
which obviously you have a background in this area, but
(04:04):
how did you even begin. Did you have certain contacts
in the industry that you could refer to, How did
you do it well.
Speaker 2 (04:12):
Really, it was very much just sharing our experiences traveling
with Breton. That's how it started, and it was just
us on a page. When we went somewhere, we would
share it. Whether it was in Sydney for a day
trip or whether it was further afield. We just share that.
I've learned about the various needs people have, and I've
tried to incorporate that and tweak the information I provide.
(04:33):
So originally I would just maybe put photos and say
that somewhere was accessible, whereas now I put measurements for
the bed height and the door width and things like that.
And then over time I started to think all a
video tool would be even better because if I do
a walk through, people know, it's not some tricky video
(04:53):
that some hotel has done that you know, makes everything
look bigger and broader or anything. It's just walking through
and saying, hey, this is what it's like.
Speaker 1 (05:04):
When did you first start to realize 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 overplanner. It took me two years
(05:27):
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, I don't know x
BALI this weekend, let's go, it's just not going to
happen for me. So I'd love to hear your perspective.
Speaker 2 (05:46):
Well, I would agree, agree wholeheartedly that every ad or
any sort of media see around travel makes it seem
like this freeing, wonderful experience where you sort of let
go of all the daily shackles, and I think, like
you say, 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.
(06:11):
So up until he was seven, we're able to carry
him in a back carrier. And well, when I say we,
that's royal we. My husband was actually the one that
was slepping around with Braiden on his back. And as
soon as we had to hang up that back carrier
because Brandon was getting too heavy, that was when life
became much more difficult. Researching trips to the Instagram became
(06:35):
part of our planning.
Speaker 1 (06:38):
How has your perception changed in as far as what
you thought life would be traveling with Branden in his
wheelchair and what it is like now that you're well
troubled and you've traveled as a family many times.
Speaker 2 (06:53):
I think faust 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. I think everything, apart from
the fact that sometimes you get skipped the line, everything
(07:15):
does take us longer, from the planning process to the
actual carrying out the activities. If we go somewhere and
it's a road trip and you're getting in and out
of the car, it's not just a matter of everyone
hopping out at their door of the car. It's the
fact that Branden 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.
(07:37):
So there's definitely a lot to consider.
Speaker 1 (07:42):
I am really conscious that Branden isn't sitting here today
in this conversation. It's the first episode that I have
not directly interviewed the person with their 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
(08:04):
that you have prerecorded an answer from Brandon today. Can
you talk first to give the audience some context regarding
Braden's access needs and how he best communicates.
Speaker 2 (08:18):
Of course, now, the reason Branden is not here today
is part of the reason that Have Wheelchair Will Travel
was started, which is because Branden does not like being
at home. He loves his home and he loves his family,
but Brandon likes to be on the go constantly. So
Have Wheelchair Will Travel in many ways, we started just
simply because we're out and about all the time. Every
(08:39):
weekend we were doing things, and similarly, now that he
has left school, he is out and about every single day.
Brendan needs he's a wheelchair user, he's nonverbal. 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 is nonverbal, he gets a
(09:02):
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 what to chat
to him about. This suddenly being nonverbal is less of
a barrier for him, and he just, yeah, he embraces
every opportunity he gets when he travels, which we love.
Speaker 1 (09:26):
I've always been conscious that I don't feel I've been
able to properly reflect the experience of people who are nonverbal.
So I really value your Braiden'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
(09:49):
for someone like Braiden. That's super interesting.
Speaker 2 (09:52):
Yes, for him, I think travel is it's like a
breakthrough with being nonverbal. It's, you know, if you can
imagine you are on a whale watching trip and a
whale breaches in front. Everyone's experiencing exactly the same thing.
So when he excitedly vocalizes, people know what he's vocalizing about,
and they feel similarly, and they're so excited that they
(10:15):
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 another language,
but you're also sharing a similar experience. Suddenly the language
barrier is less. It's still there, but it's just a
(10:35):
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.
Speaker 1 (10:44):
That is so beautifully expressed. I wholeheartedly agree with you
in that vein. I'd love to hear from Brandon in
where he likes to travel and likes to visit and
where his favorite places are.
Speaker 2 (10:57):
Ah Well, he is sharing with you you what he
likes about travel. So Braden pretty much likes traveling anywhere.
He really likes any kind of experiences he can have
when he's traveling. So he's done cable hang glining in Tasmania.
He's done jet skiing on the Gold Coast. He's ridden
(11:20):
in helicopters and buggies and quad bikes in Fiji. He's
done all sorts of things. But he does a preschool
program where he talks to the children through his device
about what he likes about travel. And this is what
he shared. I like spending time with my family and
(11:40):
meeting new people when I travel. So he has photos
that he shows the children of him traveling, and I
guess it'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
(12:02):
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 likes.
Speaker 1 (12:20):
So when you're planning your next trip, what sort of
access needs do you have to keep in mind?
Speaker 2 (12:25):
Those?
Speaker 1 (12:26):
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.
Speaker 2 (12:43):
So we travel, we couldn't find anything on the market
that suited Branden's toileting needs, so he has like a
standalone code chair at home, so we had to design
and come up with something ourselves. So we've done that
and so we carry that in a suitcase. Takes that
one suitcase by itself, but that just gives us. I
(13:05):
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 reverst,
so we'll book the car hire first, because if we
can't get the right car higher, we can't travel to
a destination, so somewhere like Sacans or Bullarou where full
wheel drives are very popular. In general, we have to
(13:26):
make sure that we can get something that will suit
our needs. And you know, for Braiden, it's just really
a case of making sure that there's activities he can do.
There's no point in us going somewhere and him being excluded.
So if Braiden 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 Braiden might do something that
(13:48):
particularly interests them, and the girls might split. But we
do like to have shared 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.
Speaker 1 (14:06):
And I think that really beautifully expresses how different disabled
tourism is. I did a master's degree in tourism druly,
and they were talking about the process of somebody picking
a destination, how a tourist picks a destination, and for
disabled people, we often do it backwards because we pick
(14:28):
the transport first, or we pick the activities first, and
that dictates where we go. It's not necessarily based purely
or destination. Will go wherever the access.
Speaker 2 (14:40):
Is that's right, and also where the information is, because
if I always say to destinations, if you actually provide
information on your homepage and it's easy for me to find,
it's like rolling out a welcome matt to our family.
We immediately think that you've thought of people who have
access needs and it makes my life so much easier.
So of course more likely to pick your destination over
(15:02):
another one where I can't find any information about what
we can do that.
Speaker 1 (15:06):
I think one of the things that really frustrate 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
(15:29):
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?
Speaker 2 (15:50):
Well, I don't know, but I've been on my high
horse about this exact topic recently. They all do photoshoots
because they have galleries on their websites, so it's not
that hard, and it's actually counterintuitive if they don't take
a photo of the accessible roup. But unfortunately, I think
we are still dealing with the fact that the tourism
(16:10):
industry does not see disability. It doesn't fit into their
sort of sexy, slick imagery, and it doesn't you know,
grab rails apparently must be offensive to some because you know,
we don't get those photos of rooms, But realistically, if
they design them beautifully and like every other room, it
shouldn't be a problem. And so many people require those facilities.
(16:33):
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, you know, taught myself blue telling people one
(16:55):
in five Australians live with a disability, and that's only
the people that identify as living with disability. A lot
of elderly people that have the same needs wouldn't identify
in that one in five, So it's not niche and
we just need to all get on board with it. Really.
Speaker 1 (17:12):
I often feel like I've been kidding my head against
a brick wall on those very topics for a few
years now, Julie. So I am one hundred percent 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
(17:34):
is just so frustrating and mind blowing and frankly ablest.
And also I don't know whether you agree, like I
just think it's such a waste of time. Then 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
(17:56):
to have a quick landing page on a website and
it would be you know, reduce all those man hours.
Speaker 2 (18:05):
No, I agree one hundred percent. And as I said recently,
when I was on a panel talking to small hotelians,
I'd said, 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?
Speaker 1 (18:28):
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 Brandon?
Speaker 2 (18:39):
Ah, I think probably one of our 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 what are the
destinations that will be much harder as we get less
physically able to give Bredon a access to. But I
(19:01):
also think that long haul flights are a big problem
for Brandon. 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 of the amount of
effort that it would take for us to do it,
and also for him physically, it would just be quite
(19:22):
challenging for him to be in that upright position on
never a playing for such a long time, and the
discomfort that's you know, most of us find it really uncomfortable,
but for an on thego guy who doesn't sleep so
well upright, it's a real challenge for him. So that's
that's probably one of our biggest barriers at the moment.
Speaker 1 (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, for other people that
use your website and your information.
Speaker 2 (20:05):
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 a really long way off. I'd love
to say that I think it's closer than it is.
Unless we have new fleets, it's not going to be possible.
Like I can't see it happening on like retrofitting older
(20:27):
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 power 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
(20:50):
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 All Wheels Up movement, which is located in the US,
is doing some really good work and advocating for it.
I think there's really hardy bunch of people that are
(21:12):
really trying hard. But I'm just not sure how soon
it will be. That's the problem. I don't. Let you know,
people get very excited when they see it, you know,
being shown in these videos, but I just think it's
a way off yet.
Speaker 1 (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 Brandon and what was that like?
Speaker 2 (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 accessful accommodation, and I can
certainly see why it's such a popular choice for people
because they can take what they need on board without
luggage allowances. They don't have to get out of their
wheelchair to get on the cruise ship. They can take
(22:10):
their hoists, some of them higher electric beds, so high
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
(22:30):
can transfer on a 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 rails be
(22:51):
problematic too. People really are 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
(23:12):
do do it, but they do need to be able
to transfer into the wheelchairs. So in each area of transportation,
there are still challenges for those that are of the
highest needs.
Speaker 1 (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, will this be
maybe our last overseas trip or will we not travel
in the next couple of years together as a family,
(23:47):
And of course that's always such a grief, but for
a disabled person and people who have disabled family members,
it really is a marked change because we rely so
much on other people.
Speaker 2 (24:03):
I know, and I recently created a list for Brandon
of things that because of OH and S and because
of the limitations around support workers and organizations. 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
(24:25):
do it. And I wish it wasn't like that, but
it is a real sense of almost 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
(24:46):
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 either had a support
worker at our destination, and we have one trip where
we took a support work with us because Braydon, as
I've said before many times, he's very on the go,
so lingering over a long meal is not his thing,
(25:08):
whereas my husband and I getting to the point where
we're kind of like, oh, well, we would like to
do this particular 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 your destination, that's
really nice as well.
Speaker 1 (25:25):
And if there was one thing that you could make
non disabled, particularly tourism industry, base people better understand about
traveling with disability, what would it be.
Speaker 2 (25:37):
Trually well, First of all, I'd like to say to them,
I always like to appeal to people from the perspective
of if you enjoy 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 one suddenly became disabled. So
I just think if people thought in those terms, they'd
(25:59):
be farm more inclined to just think yes, of course
I wouldn't want my daughter to miss out. Of course
I wouldn't want my wife or I wouldn't want to
miss out. I love the tourism industry, but I think
information is key. Providing information, putting it front and center,
don't hide it somewhere, Understand that this is a missed opportunity.
(26:22):
You know, you wouldn't say no to any other business,
so why not embrace this business?
Speaker 1 (26:31):
Thank you for listening to this week's episode. I hope
you enjoyed it. If you did, can you please leave
a rating and 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
(26:51):
for the disability community. Thank you all for listening, and
until next week, have a good one. Guys by I
would like to respectfully acknowledge they were wondery and bun
wrong people of the caul And Nation of which I
recall the podcast to day, and I pay my respects
(27:15):
to both elders past and present, along with and especially
to those in the first Nation's communities who are disabled themselves.
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