Nothing about us flying, without us: establishing a baseline for disabled travel through inclusive design research

Before I get started, I just want to acknowledge the Gadigal people of the Eora nation, the traditional custodians of the land on which we meet today and pay my respects to elders past and present. I also wanna say thanks to the organizers for inviting me along. Yeah. I'm from across the ditch, and we don't have much like this at home, so it's really lovely to be here in a room full of researchers who actually love what they do.

So thank you. I also want to thank all of the presenters that have gone before me. Being the last one, in the day can come with a couple of, issues. People want to get out the door, catch the trains, or get to the pub quicker or whatever. But, actually, I'm really pleased that I'm going last because it's fantastic to hear the level of expertise and the level of interest and passion that's in the room.

It's also kind of good because that means I can cover off and make sure I've got all the points covered. I also want to say thanks to all of the amazing people who participated in my research, the research that I'm gonna talk to you about today. I think that when you're working with disabled people and people who have specific vulnerabilities, I think it's really important that we are aware that they're putting themselves in a situation, that could be a little bit risky for them.

And so it's one of my, sorry, personal, things. This is around, you know, their contribution isn't just a, a little card, you know, a a present card or something like that. They're giving up a lot of their own insight. They're sharing personal stories with you because when we start dealing with things like toileting, and eating, and medication, we're getting down into the nitty gritty of humanity, and it's really important.

Sorry. Okay. So, what are we here for? So, about two years ago, in New Zealand, our airline, one of the greatest in the world, I would say, basically came and, said to, a couple of, disability organizations, we don't know enough about disabled travelers' experience. And we need more data and more stories to convince the business that it's important for us to invest in it.

What they basically were saying was, we need something that is disability lead and disability focused. I'm so sorry, I was not picking. I think it's absolutely fabulous that you did the research. But, what I do believe is that it's really vital that we actually weave accessibility and disability into the whole process.

Not just have someone come along who may be able to help, or who gives you a little bit of guidance. For many years, I've been travelling the world doing, research, and from a cultural perspective, you would normally have a cultural advisor with you on the team. You would normally, well certainly in New Zealand, if we're doing any, research with, Maori people, we actually have to have a Maori researcher on the team.

It's not like we are, we It's it's about community. It's about making sure that that is an authentic and lived experience, process. So, we were really lucky because our sponsor, and this is the amazing Ed Collette. And if you ever get an opportunity to read any of his stuff or, see him speak, he is fundamentally, the driving force behind accessibility and travel in New Zealand, but also worldwide.

He himself is not disabled, but he does have lived experience of two children who have quite complex needs. You also have a researcher who has a variety of different, hidden disabilities. Some are a bit louder than others. We also need to make sure that our participants, all of them, that they are authentic travelers that we can get to know real quickly, and that we can get them to dig down as deep as they can. And also that the deliverables, that includes the survey, it includes the ethnography, it includes the communications.

We had to be very mindful that at every step of the process, we had to consider accessibility, right the way through. So, in New Zealand wanted us to look at the whole of their, life cycle. It's a bloody big mission. I loved that you were able to narrow your scope down to just the train travel.

That's amazing. I wish that had been the case for us. But what we did was is this that we actually looked at just from them leaving their home that of the On the day of travel, we didn't look at the discovery or any of the stuff beforehand. But it was still, quite a big, you know, undertaking. They really wanted all of us wanted from us was tools and stories to tell, to show, to demonstrate, to gain champions.

I love all of the stories, you know, everybody asks from today. They basically wanted us to help them get buy in from the business, to be able to get more money to invest in accessibility. Yep. We had a comms, strategy. And and what I'm gonna do is is that our methodology was, kind of three phased.

We did a survey, to try and gather, some quant, but also to help steer the questions that we wanted to have answered in the ethnographic research. We did some ethnographic research, with 12, people who have, a variety of different disabilities traveling from New Zealand to Australia.

More about that in a minute. And we also did a, expert, validation workshop at the end. But, the first step was getting people to participate. New Zealand's not that big. There's only about five million people there. And if we go on the statistics of one in five or one in six, that means we're less than a million people who have, access needs. We also had to get people who had traveled within the last twelve months, and were willing to participate in a survey that was, you know, asking them fairly probing questions.

What we, we partnered with a couple of other agencies that deal with different aspects of accessibility. I'm a digital accessibility specialist. We also dealt with somebody who's built environment and somebody who's customer facing. What we did was is we put this out on all socials, making sure that it was accessible as possible.

We put it out to all of our networks. We put it out to all of the, organizations, disability focused organizations. And we thought we'd get about 300 quality responses. I think that's probably No, it's a reasonable, you know, request. What happened was, we got about 3,000.

Now, that there indicates that what number one, there's way more people who identify as having access needs than you might think. Number two, people who have access needs want to tell their story. Good, bad, and ugly. They want to talk about it. They want to tell you, and they want to have the opportunity to be heard, which I think is fantastic.

Our survey, we had to be really mindful of course, that the survey was as accessible as possible. So, we had to choose the platform wisely. We had to check it And, with screen readers, we had to do all of the good things you would do, if you were doing this for, you know, anybody ever. We also had to provide other, alternate formats.

Because budget was cut hugely, we weren't privy to having an interpreter, a New Zealand sign language interpreter available to help with interviews. But we did record sessions and get them interpreted. We also had, someone on the phone who was, available to help and work through people, through the surveys.

It was the only way that we could stand up to scrutiny. Right? If we're an accessibility consultancy doing accessibility research, the research needs to be accessible. And I'm not able to go into too many of the details, just because, you know, Air New Zealand owns the the data. But if you have a look at some of these things, these are not, surprising.

Right? One of the biggest issues, the one that sits up right top there is standing and queuing is hard. Getting through security is hard. Getting special assistance is hard. One of the other ones is feeling overwhelmed by the noise, the smell, the people. I don't know about you, but going through duty free is not my favorite thing to do when I fly.

Certainly not if I've just come off a long haul flight, or if I'm getting onto a long haul flight, the smells, the noise, the lights, and everything else can be quite overwhelming. And what we did know is is that, the ethnographic Oh, sorry. The survey did really help us inform the ethnographic research. We knew there were parts that were gonna be difficult.

So, what we tried to do, we created, a diary, I suppose. We created a diary that was basically at various different moments through their journey. We called them their access moments. So, from the survey data, we had identified when they were going to be issues. So, we asked them to fill in that fill in that diary study after that point.

Right? So, for example, we knew that security is one of the biggest issues. Don't know about you, but it's mine. So what we said was, don't like we we were we sorry. We did a briefing session with them beforehand, and took them through all of the questions we were going to ask, and basically said, once you are through security and have yourself together, then answer this question. Okay? So, we weren't trying to get them to do anything at the point where they would be the most stressed.

Thanks to the survey data. What I would say is also this, diary itself had to be, again, fully accessible. We had to use plain English. Sorry, plain language. Not plain English, plain language. We had to use questions that were as simple as possible for the very wide variety of people that we had.

We were using pictograms from, Air New Zealand's design wheel, as much as we could to make it as easy as possible. And the flexibility was really important. So, example, our NZSL sign language participant was not really comfortable writing in English. So, instead, what she did was, she got asked to just write the questions, and she then, did videos, as she went of NZSL, and then we got them translated later.

Now, you guys mentioned the logistics. Oh my goodness. So, the logistics, of trying to organize 12 disabled people, two of whom need support people, three interviewers, six departure points, three destinations, COVID, insurance, transfers, and preferences.

Yep. That wasn't my wedding. That was at least six people's weddings, I think. And next time I'm doing this, I'm getting a a dev ops person Sorry, research ops person in to help. One of the big things was is this that we had to build in a whole lot of stuff like insurance.

And the insurance isn't just tick the box, where you go. We're talking about people with complex accessibility needs and complex medical needs. One of our, travelers, for example, has to actually always, she can't actually fill in a normal insurance, travel insurance form.

She has like documents, like for Christmas, that come through from her specialists and her GPs. So, we did have to do that. Yep. And, then we had all of the ducks in a row, and I got COVID. And so the bonus was we were working for an airline. Rescheduling all the flights was not a big deal.

Actually, because we had staggered all of the the travel, actually, what we did was we took all of the stuff at the beginning and just moved it to the end, leaving the middle bit as, as much as we could. Obviously, when you're working with, a vulnerable population, having COVID, not a good idea. And, you know, we had to be really careful and really sure that I was free of of symptoms and everything before I was allowed, or before I would, agree to doing it.

Okay. So, our participants. Now, I've heard a couple of different, you know, takes on this, over the last, day, which I think is really important. I think the first thing that I would say is is that the quality of the data is what I would say the most important thing. In a study like this, you do not get the chance to do this very often.

You were talking about how hard it was to get the the business buy in. Right? You don't get these research jobs very often. So, you have to know that the data that you're gonna get is gonna be robust and reliable. And it's gonna be complete, and then it's gonna be deep as you can possibly get it. So, we also have to be careful that we're not getting just the, sanitized, disability organization, political, we're talking on behalf of all disabled people. We don't want that either.

What we went for is we actually drew upon our combined, there was the three organizations, our combined, networks, to be to be able to find people. So, our participants came from, so, my company actually has what we call an access panel. So, it's about 300 people, across New Zealand.

We also have connections, here as well, but that's another story. So, we drew upon our access panel. We worked with some of the community groups. We worked with friends, for sure. Absolutely. Relatives and our staff members. That's because, this guy over here happens to be, one of my research Not one of my researchers.

Sorry. One of our advisers. This is Julius. He's blind and perfect participant because not only is he blind, he's following he's traveling on a international, passport, and he has not done any international travel on his own. So, it was a really big step. Now, people, in New Zealand were a little bit hesitant, when we sort of said, hey, listen.

We know these people, and we trust that these people are the right people for us to take. It took us, several discussions to convince them that the quality of the data was more important than whether or not this was a random person that we picked out of, you know, a lineup. We needed to make sure that the person that we were trusting to represent, NZSL users was articulate enough, even so in NZSL, and respected enough in the, deaf community in New Zealand, which is small, and wasn't gonna pull any political BS.

And so, there was a lot of discussion around who would we would take. So, it was not done, lightly. But it was done, yeah, pretty pretty carefully. What I would say is is this that, this is, this is some of the travelers. Yes. We did manage to get some of them together in a room. I'm the second from the whatever this is.

So, we've got Kylie sitting in her power wheelchair. Kylie is the one with all of the complex medical issues. So, has a variety of different issues, which means she can walk, but actually, if she does, she'll probably dislocate her legs. So, she is able to do some things, but not others.

She also has a variety of different stoma in her belly, which means that she basically, excuse me, has an octopus thing that flops out of her belly, where she puts in all of her medication, you know, when she needs it. Then we have Mike behind her, who just so happens to be her beloved. He also happens to be on the autistic spectrum.

But he was there as a supporter, not as a participant. However, trust me, he provided his, input as well. I've mentioned Julius. There's me. You may have already guessed, one of my disabilities may be that I'm a bit ADHD, which fundamentally means I'm looking for all sorts of stuff all of the time.

I I I can't stop. And this wonderful and very, very beautiful human, is my dad. He's 82. He's diabetic. He's asthmatic. He has, a variety of other, chronic illnesses, which means he can only walk pretty much from here to the toilets and back, and that's about it. He has no skin conductance.

He is a diabetic. He's insulin dependent. So, his food timing is important. I will tell you, we did have a lot of fun. All of us. Any every one of the team that, participated had a lot of fun, but it was hard work. As I mentioned, we did the ethnographic research.

Sorry. We did the survey, then we did the ethnographic research. Now, all of the participants were amazing, but some did need a little bit more support than others. So, this is Neville and Erica. So, Neville has Down syndrome, and Erica went to school with Neville. And I know Erica, and I knew that she knew Neville.

And it was kinda like, we have to find someone who has an intellectual disability, who also has a carer that they know and trust, that can come on board and do this with them in a way that's gonna be useful for the client. Right? Now, this was amazing. Neville just absolutely loved it.

They went over. You know, she did business meetings. She took him to restaurants. He thought this was fabulous. Rang me up the other day and said, can I come and do another piece of research for you? I'm sorry, Neville. Not not this year. Maybe when I get another contract. Okay. What I would say is, we encouraged our participants to provide their feedback in whatever way they wanted.

And, sorry. There's three photos here. One of Kylie's power chair with the label sticking off of it. One of Kylie in bed, all hooked up to her drips pre, travel. And one with Kylie tiki touring around the airport. What I would say is that including and choosing someone who happens to be an expert vlogger, actually was amazing.

The level of openness, and the level of, I don't know, detail that she was prepared to share was huge. And what I would say is, is this that if you watch any one of her videos, she is she is online. It's Kiley with it, k y l e e, black.

She's amazing, and she's so open about all of her trials and tribulations. But having those videos, they're like gold for the client. Right? They're they're they're things that you would never ever be able to get from some random human that you pick up out of a lineup lineup. She and I know each other very well, and you know, we hung out as you could tell.

We went out drinking and having a meal after the research was finished. Okay. Now, I did mention that NZSL does pose some additional complexities and certainly budget. Sign language interpreters are bloody expensive. So, we didn't have a sign language interpreter, accompany us.

What we did was, Victoria was very capable, in actually recording all of her, interviews. So, the basic plan was we do a an interview, before they fly. They basically document the whole process, and then we do another video another interview once they've landed.

Now, in some cases, that was once they've landed and got themselves settled. I'm not stressing out a person with Down syndrome who is tired and grumpy ever again. That's not gonna happen ever again. And we also had things like, this is Corinne. And Corinne is, one of New Zealand's, very vocal, disability advocates.

She's a quad amputee. Right? Both legs, both arms. And and when she says that she needs, to sit in business class, the answer is yes. And that's because if you think about those, great prosthetics, they're big, they're bulky, and they do not fit in cattle class. So, when she's saying that, that's not a want, that's a need.

Now, that was one thing that I was unaware of, going into this, but it was one that we absolutely, you know, embraced. I think also that knowing and understanding the participants' needs are really important and really vital. So, as I mentioned, my dad's diabetic. This photo is my dad comfy in his chair, holding onto a glass of red wine.

So, we were one of the lucky few who had to transfer flights from a domestic airport to Auckland. And unfortunately, because of the process, we didn't make it for food in the lounge beforehand. We didn't make it in the lounge in Auckland. And by the time that we got on the plane, dad's blood sugars were dropping really bad.

And he should have eaten an hour beforehand. And there was all of the waiting around, and all of the, excuse me, BS that goes on. Kylie has this wonderful phrase, hurry up and wait. So, for dad, I knew that as soon as we got on that plane, I had to get him food, no matter what. Now, the flight attendant was amazing.

She says, I can't give you food. Would a red wine help? And he goes, yes, please. So, all that was, we needed to get him sugars. That's all we needed to do. The other thing is, is that the poor old bugger, during the whole process, there is a lot of standing around and wait, or sitting around and waiting.

Hurry up and waiting. We waited for far too long in so many places, and I think that that's that was one of the overarching things. Not always something that Air New Zealand, or any airline can fix, but definitely one of the findings. I think the big thing for me is each person's pain point, and all of the key insights were so huge.

We got so many of those insights. Accessible car parks. They're usually miles away from the check-in. It's usually the valet ones that are closest. The walk from the the gate to the No, from wherever, from the wherever to the gate can often be the big step.

And also, navigating stairs. I have a habit of falling over and breaking myself, and actually walking up those stairs terrifies me, even though I'm a perfectly sane human being. I I really struggle from a you know, from a worry perspective. What I would say is, is this that the Wait.

Yes, this one. One of the biggest things, and the thing that I will always take away from this, is that the human stories were the most important. Mike Thank you. Mike and Kylie are a couple. They're on a they're on a a flight to, you know, the to the to to Melbourne. They're still a couple, despite the fact that they have disabilities and medical issues and whatever else.

They're a couple. They need to be able to experience those things together, and they need to be respected as a couple, as well as individuals. And what I would say is, Kylie made this amazing statement during the interview straight after their flight. She said, we don't get to travel together too often, because I'm not usually well enough.

But this is an opportunity of a lifetime for me and Mike to hang out together, and all I wanna do is share a meal and a glass of wine with him on the flight. That's not too much to ask. That's the experience of flying with your loved one, on a on a weekend away. Now, we should be thinking not just about, you know, whether or not the, I don't know, the signage isn't big enough, but we need to be thinking about the the human bit of it as well.

The middle photo there is Kylie, in a hoist. So, it's basically like a big pulley thing. So, she It has to be The the the seat goes under her body, while she's sitting in her chair. Then, she's lifted. Then she's moved across, into the plane, and that, they basically navigate down the aisle.

The issue here is that for Kylie, she's done this a 100 times. But, the staff that were there at the gate had not. And she was telling them what they needed to do. And from that perspective, the humanity of what she was doing, I loved your point. Right? It's not up to the participant to be telling people, the experts, what to do. I would say, Kylie probably has helped Air New Zealand see a whole lot of things that they didn't realize.

Anyway, this is Dan, and the doggy is Ezra. Ezra has the most amazing bark. He is so amazing. It is ridiculous. Anyway, Dan was our low vision participant. Now, Dan is a guide dog handler, which means he's used to having Ezra guide him places.

He's used to having Ezra with him. He travels with Ezra if he goes across to Australia. But if someone gets COVID and you have to reschedule, their flights, they they can't be done at short notice. So, as a business traveler, he's actually Well, he was told, I'm sorry. You cannot take your guide dog with you.

Even though the guide dog has all of the right documentation to come to Australia, and back again, and whatever, Ezra is legally entitled to be on that plane. He was told no. What happened was, poor old Dan, who was used to having his dog take the lead, had to wait around, and at one point, he said, I felt like a piece of baggage.

Because the people that were nominated to lead him places, just treated him as if he could just wait over there. Nobody talked to him. He said he basically ended up hanging out with most of the baggage handlers for most of the trip. That's not a flight experience. As we saw in the survey, security was one of the biggest pain points for everybody.

Whether it was the indecency of having your, umbilical, octopus being handled by the security, whether it's struggling to get your shoes on and off, when they did not contravene the, security guidelines, but that person made him take his shoes off, and then did not offer to help him. Or for me, when you get stuck in you come through the security, and everybody's there, and I hate that, but that scares me. And it says, move to the end.

Nobody does it. Despite training, what I would say is the big thing for me was many people just do not apply basic good manners. Whether they're a disabled person or anybody else. Now, this woman has my Julius. I've just handed my Julius over to this woman, and she's looking at her phone. Not talking to Julius, who is a person, quite funny, quite adorable. She's basically just looking at her phone.

Now, her job is to take him to the gate. Now, as far as she's concerned, that means take him to the gate. It doesn't mean have a bit of a chat and, you know, get to know this person or find out who they are. She never even asked his name. She just checked his boarding card and said, okay, and away she went.

We said that check-in, signage, and toilets were the big issues that came through. These weren't things that we weren't expecting. Anybody wanna hazard a guess as to what the big thing was that we did find? Anybody want to hazard a guess? It was the food Oops.

Sorry. It was the food service. So, let's think about Corinne, who has a bionic arm, a bionic hand. And they say, would you like water? And she goes, yes, please. And they give her a plastic cup. Everywhere, all over her. So, she has to pause and think, yes, I would like water, thanks. But could you please put it into a proper cup, so that I can hold on to it?

Also, all of the little packets and bits and pieces that need to be opened. For Corinne, she either has to ask one of the attendants, ask her colleague, whoever's sitting next to her. Or, you know, in my dad's instance, watching him struggle to open the, earbuds for the in flight entertainment was absolutely bloody hilarious.

And I was trying very hard to be professional and not step in, because I'm here to document this. But he's my dad, so I did. I mean, once I'd taken the photo, of course. The other thing is, is that being on the journey also allowed really good observation of other people's pain points. So, because we were part of the special assistance as we went through the airport, We observed a variety of different things that kind of can be quite sad.

So, on the far side, this lovely woman is, has a pair of crotches. Now, she happened to be on our plane on the way back. Thank you. And what happened was she couldn't reach up to put her crutches in the overhead locker, and her husband was trying to do something else. And one of the staff came along and were actually really rude at taking them away from her, and taking them somewhere else.

They were not near her. So, when she wanted to go to the toilet, she didn't just have to get out of her seat. She also had to go, excuse me. Can I please go to the toilet? Can I have my crutches? The lady's in the middle. And the elderly lady is now, as she said, I'm too old to do this on my own, and my kids don't trust me to not get lost.

So, I take special assistance. And she said, one time she remembered when her husband, who was unwell, they were travelling together, he basically had special assistance, and she was able to walk. But the special assistance staff just took off, and she couldn't keep up. And so, she was left waiting.

And as she said, doesn't make any difference whether or not the special assistance people are there for the special assistance person. They're there for that experience, not just for the person in the wheelchair. This one over here, number one, the woman is trying to push a wheelchair one handed. We don't do that. That is not safe. There is health and safety issues around that.

Number two, she's on her mobile phone. Number three, the person in the wheelchair doesn't need a wheelchair. She's blind. She doesn't need a wheelchair. And if you think about the fact that you are offering special assistance, and one size will fit all, that's not the case. Okay? A blind person just wants to be lead.

They want their elbow, somebody to help them, guide them through. Yep. I'm very aware. The last one, what we did once we'd done all of the research and combined it all, is we did a validation workshop, with experts, from the community. So, this is Amy, who's on pretty much every governance board for disability in in the country.

As well as the people from Air New Zealand. It really helped us kind of validate and get that buy in from the broader disability communities, that what we were doing was authentic. We Oops. We created a research report for them, of course. But actually, what was more important was the data, and the photos, and the videos, and the diaries, and the files.

Actually, the report never got, finalized. So, we gave them the draft, and they said, that's fine. Actually, we just want the dataset, please. And anybody I got to this part of the story without mentioning AI. Guess what they did with the, with the data? They created their own, AI tool to challenge their business decisions.

So now, they basically can say, hey, we're thinking about doing this. What are the implications from a from this data set? What have they done already? Okay. So, one of the biggest issues was insecurity. We know that. That's not their remit. That's not from Air New Zealand. They can't do anything about that. But, wait, they did, which was really awesome.

They actually worked with airport security in Auckland, and have changed some of the processes around medical equipment screening. In the middle, my NZSL participant, got lost and left her baggage behind and caused all sorts of drama.

Excuse me. They've now actually taken on board. Staff can now learn 30 basic signs that will help them communicate with someone who has, who is NZSL. And these are basic signs that try and inform them of what they need to do and keep them safe. And the last one is from an autism perspective, is just that they actually provide, autism days, where kids, families, people who have high needs children, who don't want to travel, the opportunity to come, go through the plane, sit on the plane, have a whole flight experience without leaving the airport.

And that is huge for a kid who is, you know, as terrified. You can't take them on a flight, but you can take them through one of these. And then when they realize that they get to go and hand out, lollies at the end of it, that's wonderful. Okay. I know my time is short, and I know you wanna go to the pub.

So, key principles. I tried to keep the number of words down. I would argue that we should be using expert researchers who understand the space. No reflection at all. And I think that it's vital that we believe that when we are dealing with a specialist, or a specific population, we should be thinking about using someone from that population, or at least someone who is expert in that area.

We need to design accessibility into all aspects of the research. From the comms, to the survey, to every part of it. We need to build flexibility as well, and allow people, participants to be able to participate in the way that works for them the most. I also think that measuring dignity and effort from all perspectives is really important. Because, I think I think it was you Like, if we're just looking at the transaction, it's not enough.

Actually, we have to think about the heart, and we have to think about the embarrassment. And there's one story, I know, one story, of, a participant who was going through, security, has a very large umbilical hernia. And, the security person decided to give him a frisk down. Didn't ask his permission, and then basically lifted his t shirt up to find out what this big thing was on his belly.

No words spoken. Words were spoken by me to the security head of. Basically, that's not human. You don't you don't treat someone like a, like a piece of meat. That's not okay. I also think that it's really important that we share the authority and validate any findings around the disability space with disabled people that aren't the ones that have the political stance.

I also think that you need to budget for the unexpected. We were lucky it was an airplane, an airline thing, and the flights could be rebooked with no hassle. But, yeah, if it hadn't been an airline research, then we could have had some more issues. So, my takeaway is talk with people who make you see the world differently. It's the only way that you will, see the answers.

So, thank you. That's me. Sorry.