Neil Well, hello. I'm Neil Taylor and this is Episode 2 of "Let's Talk About It," a podcast from Irwin Mitchell all about the ability in disability. This time we're talking transport and travel with Anne Luttman-Johnson, who's been round the world in her wheelchair, and Chris Wood, founder of the campaign, "Flying Disabled," and father of two disabled children. Here's what's coming up.
Anne When I first left hospital I was very depressed, because suddenly the reality of life in a wheelchair came home to me. Then I got a car and then I had my freedom.
Chris If you engage with aviation, and I have done, I have found they are aware how far behind they are, put against trains, and buses, and taxis. And the world is changing. You talk about Google. They are mapping wheelchair access around the cities. Airbnb, they delivering accessible accommodations. They are also delivering accessible experiences on their website.
Neil We'll be talking about planes, trains, and automobiles, and much more. So let's talk about it. Thank you for joining us, Anne and Chris. First of all, we need to understand a little bit about who you are and what you do. So, Chris.
Chris I'm a campaigner and a lobbyist. I set up Flying Disabled a couple of years ago to bring better air travel to the air travel industry, to airlines, and it started off as I wanted to do it for my children, but it's clearly, got a little bit bigger than that.
Neil Anne, tell us about you.
Anne I am a lawyer by training, but my role was primarily helping our injured clients, our seriously injured clients, those who were going to be left with a long-term disability. That's what happened to me. At the age of 21 I broke my back and I've been in a wheelchair since then. And I thought, "Well, I can use my 30+ years of experience to help them," and help them to come to terms with what's happened, to see that there is a way forward, to see that you can still live not just a life, but actually a good life as a wheelchair user. But there are a number of battles along the way and I was helping people with those battles I suppose.
Neil And that's a job probably that most people don't even know exists.
Anne Well, no, and it doesn't exist in lots of places. They particularly wanted to have someone in this role, but it is unusual. And yes, I sort of carved out a niche for myself and really loved what I did. But due to a few health issues and the fact that 30 years plus, pushing myself around in a wheelchair has left my arms a bit knackered and I decided to stop work early and while I still had the energy to do other things.
Neil So I got here to the studio on my bike, well, not my bike, on a Boris Bike. Chris, how did you get here?
Neil And Anne, how did you get here?
Anne It was not a bad journey this time. Although, when I got to Marylebone Station there was nobody to meet me, even though I had booked assistance and Oxford Parkway had telephoned through to tell them that I was coming. So one of the other passengers found someone. They sort of looked at me and said, "Are you all right?" I said, "Could you find someone?" They went and got someone and they brought a ramp. And that unfortunately happens a bit too often.
And what's really annoying is that Oxford Parkway is a brand new station and you still need the ramp to get on and off the trains. And I've traveled on trains in different countries. In Finland they're fantastic. The train service has a little button by the door that you press and then a platform comes out from underneath the train to go over the mind-the-gap bit, and you just wheel straight onto the train. And I don't know why we can't do that in this country.
Neil That kind of rigmarole, of the person not being there and you having to ask for help, how does that make you feel about traveling?
Anne Well, it rather puts me off train travel, because I just like to be able to do things spontaneously. And with my car, with my wheelchair and my car I can do things when I want to do them and go where I want to go and whatever. But yeah, traveling by train, you're supposed to book the assistance 24 hours in advance. You have to tell them what train you're going to be on. Well, it's fair enough to say what train I'm coming up to London on. But how long am I going to be in London? What time train am I going to get home? How long is it going to take me to get across London to the station?
Chris Yeah. I think the reality of that certainly, with both my children having brought them into London, is that with the trains, if you booked a train to come back at 5 p.m. on a Tuesday afternoon, you're not going to get on that train. An able-bodied person will struggle to get on that train. I remember coming into London with my daughter once and exactly the same thing, we were waiting for somebody to bring the ramp up to the train and it was just we're waiting. We're waiting and I could see the ramp, so I went to get it.
I think they're locked up now, but they weren't then. They were just on a bit of chain, so I grabbed it. I thought, "Well, I can do this. It's just put it into holes on the train and down we come." However I was spotted by one of the station staff who came up and said, "You can't do that. You're not trained." I bit my lip. I really bit my lip. This guy had no idea.
Neil And do you end up biting your lip a lot of the time?
Chris If you just want to get on, the answer is, "Yes." Also to just get off, you just, "Oh, yeah. There's no point in... I'll do a letter when I get home."
Anne Yeah. I've written a fair few letters in my time.
Neil And what kind of a response do you get to those letters?
Anne Well, most of the letters I've written have been to airlines and I know we're going to get on to talking about airline travel.
Neil I think Chris has got something to say about airlines.
Anne But I've had a gift voucher. I've had a hamper. Oh, I've had various gifts over complaints that I've made to airlines.
Neil And does a voucher cut it?
Anne No. No. Not at all. I don't want gifts. I want to be able to access these things in the same way as anyone else. I just want to get on and lead my life.
Neil So Anne, these knackered arms don't seem to have stopped you going quite far afield.
Anne Well, I like to travel and I like to go abroad. And yes, I mean, they're not totally knackered, my arms. It's just that I was getting some aches and pains and I thought I needed to take a bit more care of myself. It was way back in the mid-'90s that someone said to me, "Did you know there's a tall ship that has been adapted so that people in wheelchairs and other disabilities can go sailing?" And I've always enjoyed sailing. I'd never done any tall ship sailing I'd only sailed in dinghies and so forth, but I thought, "Well, you know, if there's a ship that's been adapted, I'd better go an check it out." So I did and I just got hooked. It is the most amazing experience.
Back in 2006 I sailed across the Atlantic, which was an incredible voyage. That took a month. We sailed from the Canaries to the Caribbean. Well, it didn't take a month to do. I was a month on the ship, but we did have a week in the Caribbean when we got there, so that was quite fun. And then, in 2013 I took a four-month sabbatical from work and went around the world. And part of that, the first bit, I flew to India and sailed from India to Singapore. So I've sailed across the Atlantic and I've sailed across the Andaman Sea, part of the Indian Ocean. So next one is the Pacific I think.
Neil So, lots of different places and lots of different types of transport it sounds like.
Neil What did you learn, doing that kind of -- I love the word, "voyage" -- that kind of voyage around the world?
Anne I learned that there are certain airlines that are a lot better than others. I can sit in an ordinary airplane seat. I need a lift-up armrest, in order to be able to transfer myself into the airplane seat. And believe it or not, although some airplane seats have a lift-up armrest, invariably they are all different on different airplanes. The airline staff frequently don't know which ones do. The check-in staff certainly don't know, so you can't book yourself that sort of seat when you're booking your seat pre-boarding. So that is a bit of a nightmare.
But of course, my biggest concern when I'm flying is that then they take my wheelchair away and they put it in the hold. And A, have they put it in the hold? Is it going to get to the other end? B, is it going to be in one piece when it gets to the other end? Or are they going to lose a bit of it or break a bit of it?
Neil And this might be a dumb question, but if you're in a wheelchair and you get to your destination and your chair doesn't, what do you do?
Chris Lie down for two weeks on a stretcher or they will lend you something.
Anne And they won't necessarily lend you something that you can use.
Anne That is the right size, that you can sit on safely without getting a pressure sore, even that you can self-propel. I had one dreadful experience when I came back into Heathrow Terminal 4 it was and my wheelchair was not brought up to the door. Luckily I was traveling with two friends and one of them went through... One of them stayed with me and one of them went through, because I refused to get off the plane until I knew that my wheelchair had arrived, and was in one piece, and I could use it. Ideally I wanted them to bring it to the door and they absolutely, pointblank refused.
Chris Well, they should have done. They should have brought it to the door.
Anne Of course they should have done and of course the cabin staff then can't leave the plane if you're there. So you feel a bit bad about them and they feel bad about what you're going through, because it's not their control. It's the ground staff. Anyway, my other friend went through, found my wheelchair and said, "It's all right. It's here. It's in one piece and it's fine." At which point I said, "Okay. I will get off the airplane then." And they brought me a wheelchair that I couldn't push myself in. It had little wheels and I had to be pushed through the airport. It was the most undignified, humiliating experience. I hated, hated it.
Chris Yeah. You should have to leave the plane until your wheelchair arrives. So, what do you do if your person comes up to see you and says, "Sorry. Your wheelchair is in a million pieces on the floor of the tarmac"? There's a report out in America, where... Well, in America now they have to catalog and report all the broken wheelchairs. So between the 1st and I think the 31st of December, let’s say the month of December, in America alone there were 701 wheelchairs smashed or broken. So that means...
Let's put it another way, because they would ground the aircraft if 701 people had their legs broken. They would be grounding those aircraft and that is what it amounts to. That's the bit that air travel doesn't see. For many people these chairs are bespoke, so that could be for months by the time they've actually got the right mobility piece of equipment that's designed to hold their body. However, if you engage with aviation, and I have done I have found that they are very keen to do this.
They are aware how bad their industry is, how far behind they are, put against trains, and buses, and taxis. But it seems like they don't know how to do it. So maybe, just maybe... And I've set up a group of people here, a mini-consortium, six of us, who all have skills in both aviation, and in wheelchairs, and in other areas, where we will establish the solution, not only to make those wheelchairs that go in the hold more secure, but also to get the Holy Grail, which is the wheelchair inside the cabin of an aircraft so that the likes of my son and daughter would really benefit from that.
Neil Anne, Chris has talked about getting the chair in the cabin. It sounds like you've had success with that.
Anne Well yes, I've had some success, but I suffer such anxiety when I'm parted from my wheelchair, because, as Chris was saying, my wheelchair is my legs. My wheelchair is my freedom. I love my wheelchair. I don't look on it negatively. I look on it incredibly positively. And I have a bright-colored wheelchair with flashing casters, because I like to...
Anne Oh, yeah. You wait. So yes, and on a long-haul flight in a large enough plane, it is possible for a wheelchair to travel in the cabin. There are some lockers in the first class compartment, where a wheelchair that takes apart and folds up will go.
Neil Does that mean you go into first class?
Anne No. No, no, no, no. My wheelchair travels first class and I travel in captain class in the back. And there was one flight I did with Singapore Airlines, where my wheelchair actually fitted into an overhead locker, which was amazing. That was just wonderful, because I knew it was straight above me, and it was safe, and it would be in one piece when we got to my destination.
I have tried train travel in different countries. I mentioned earlier I think Finland, but Singapore has got an amazingly accessible rail system, rail network, which was absolutely brilliant, totally independently.
Neil And when you say, "and amazingly accessible system," let's talk about that, either in trains, or your own car, or buses. When this works, what does that look like? And what does it feel like?
Anne Well, it's fantastic, because I can just be like anybody else. In Singapore, I got to the station. I booked... And actually, to be fair, you can do it in this country on Docklands Light Railway, and on some of the Jubilee Underground line, and on the underground or train that goes out from Paddington to Heathrow. When the doors open, the floor of the train is the same height as the platform and the gap in between the two is pretty minimal. I tend to hop my little wheels at the front over it, rather like going up and down a curb, so that they don't drop into it. But it is a very small gap, s you just wheel straight on.
I've done it with my suitcase. At one time when I was traveling I had a suitcase that was on four wheels and I tied it to the back of my wheelchair. I was whizzing around with this suitcase, trundling along behind me.
Chris I've done that. I've done that with my daughter. I had to carry my suitcase. She was in her power wheelchair, so I just tied her suitcase to the back of her wheelchair. It's a feeling of power, isn't it? Going through the airport.
Anne It's brilliant. It's brilliant.
Chris It's like a train, you know, so that's kind of one good way of doing things.
Anne Then when I got to New Zealand I hired a car and I hired a car with hand... In fact, a friend came out to join me, but we had a car that had hand controls and that was fantastic. New Zealand was dead easy to drive around, because they drive on the "correct" side of the road. One of my worst experiences actually in hiring a car was in America, because I failed to specify that I wanted right-hand hand controls on the car, because they drive on the right and the driver's seat is on the left-hand side of the car. And they gave me left-hand hand controls.
It was a complete nightmare. In fact, so much so that I actually returned the car and relied instead on people driving me around, because I have spent so long driving with my right hand that I found it really difficult. And driving on the wrong side of the road, using hand controls that I was unfamiliar, and they were different to my hand controls...
Chris So it's like trying to write with your...
Chris You're writing with your right hand and suddenly to be told you've got to do it with your left now.
Anne Absolutely, yes. That is something, but apparently you can get them. And if I ever go to America and hire a car again, I shall definitely specify I want right-hand hand controls.
Neil So, despite the many challenges that we've talked about, is this more doable than people think?
Anne I think it has certainly got better in the time I've been in a wheelchair. A lot of it is confidence to go and do it. There's a certain amount of luck, that your wheelchair doesn't get damaged somewhere along the way, that the people turn up when they've said they're going to turn up, that the trains and so forth run on time. If all that goes according to plan, then yes, it does work.
Chris Yeah. I met my daughter at Paddington and we were getting the bus over to Camden, Camden Market. And I remember standing outside Paddington with my daughter and we were waiting for the bus to come along. And the lady who was driving it was clearly having a bad day, so I kind of made myself known. I gave her a little wave and then pointed to my daughter, about disabled access, and she promptly turned round with some expletive and drove off. She had a busy bus, but there was a gap in there. She was having a bad day.
Neil Is that acceptable, Anne?
Anne No, that's not acceptable. She wasn't to know that your daughter didn't have an appointment somewhere, or you didn't have an appointment, and you were going to be late for it because of that. The really annoying thing is that she needed to assist you at all. If she could have just pulled in and you could have just got on, she would have done. But the fact is that it was going to be a faff for her and she didn't feel like doing it. But that's not acceptable.
Neil And how often does that happen? Whether it's a bus or a taxi or...
Anne Well, I'm afraid I think it happens too often. I can't say it happens it huge amount to me. And the reason it doesn't happen a huge amount to me is because I generally drive myself. I have car and I like driving. And so, I tend to go everywhere I go by car. And I used to live in London, so I'm not frightened about driving around London.
Neil When this works though... I guess, Anne, in your previous career, you must have been helping clients adapt to traveling.
Anne Absolutely, yes.
Neil What does that do for them?
Anne When it works, it's fantastic. First of all, there are some good things in this country, that we do help people. If you get the mobility, the higher rate mobility component of personal independence payments, you can buy a car in the Motability Scheme. It's affordable and that's really good. And there are some other "perks," if you like to call them that. You don't pay road fund tax and so forth. And you don't pay the congestion charge for driving up into London.
So there are ways that they try and make it easy for people to get cars and drive themselves around. And when you have that freedom it's amazing. I'm in a wheelchair as a result of a spinal cord injury and I remember when I first left hospital I was very depressed, because suddenly the reality of life in a wheelchair came home to me. The things that helped were... The first thing, I got my lightweight wheelchair and suddenly I wasn't having to sit in some hideous, enormous, great contraption, and that helped.
But the thing that helped most was then I got a car and then I have my freedom. And then I have my independence and then I could do what I wanted to do and go where I wanted to go, without having to ask someone. And that made a huge difference.
Chris Yeah. I think the other thing is, without making this podcast too London-centric, is I do go to other cities up and down the country with my kids and it is a lot easier. London, unless you know it, it can be tricky. Going to Birmingham, it was good. Manchester I've been to. It's good.
Anne Traveling around outside London is much easier. Well, if you've got a car, it's easy enough to get around. It really helps to know the place you're going, and more to the point, to know the disabled parking spaces. I live just outside of Oxford and I would say that Oxford is absolutely fantastic, because I know where every single disabled parking space is. When I go to a city that I don't know, I often try and look up on the Internet and see if I can find out where the Blue Badge parking bays are. Some of them are a lot better than others at producing information about this.
Neil That's a question I was going to ask. You two are both old hands at this now, in the nicest possible way. What would your tips be? If someone said, "Actually right, I do want to venture further afield than I'm used to doing," what is the stuff that helps you do that?
Chris Certainly in the UK I think it's pretty good, but every trip is a tactical maneuver. I do a lot of football with my son. We're Spurs fans.
Neil I'm so sorry.
Chris Yeah. No, okay. We can get over that one. So, when we go to a football ground, it's normally pretty good. Some are still better than others, but they are really, really good. And I also go to a lot of the F-1 circuits with my son as well. I do a lot of shopping with my daughter. But whatever I go to, you still need to look it up. You still need to do some checks. It's still going to be a bit of a military maneuver, just to be sure.
Neil And where are you looking that stuff up? Is that Google? How do you do it?
Chris Yeah. You can go to Google. I mean, shopping centers are typically good.
Neil And what are your tips, Anne? It sounds like "get a car" is the big one.
Anne My car is a huge lifeline for me. I would also say, yeah, the Internet has made it so much easier to look things up about where you're going. My biggest problem is always making sure that there are accessible toilets somewhere where I'm going and that used to be really difficult. It has got better. It still has a long way to go. And if I'm going to visit friends, who I know live in a house that isn't very accessible and doesn't have a toilet that I can use, then I will find out where the nearest supermarket is. And now of course we have 24-hour supermarkets, so generally I think that's my biggest tip.
Chris However, I would say to people, "Do it. Please don't stay in. Whether you want to fly or travel, do it." Yes, there's a little bit of work in that, because if you don't you're missing out. And the more people that travel, and in my experience with airlines it's just go, because the more people that go, they've got to do things about it. And I know air travel numbers are rising. I think I heard a quote there's four billion at the moment and it's going to get towards eight billion by 2036.
Now, disabled travelers are increasing. It's double-digit figures, year on year. They're having to really up their game and the airports need to work with the airlines to do that. So the more travelers that we have going, and there are more, then we have to address that. And of course, you've got an aging population similarly with mobility issues, so that has to be addressed. And yeah, don't stop. Go out. Go fly. Go travel. Go see the world. Don't stop and certainly you will have fun.
Neil Well, that's what you did, Anne. We're talking about the difficulty of getting down Tottenham Court Road or wherever. What happens if you land in India and you decide to look at somewhere by tuk-tuk?
Anne Ah! No, the tuk-tuks were very interesting. And yes, I could get in and out of a tuk-tuk, although I needed... The seats were quite high and it helped to have someone to just give me a sort of boost up the backside as it were. And I have to say there were quite a lot of volunteers who were quite happy to, you know, do that. Luckily, they were friends, so that was all right. Yes.
Neil And do most people help, if you ask?
Anne Yes. The more people that get out there, and travel, and are seen, and are using these facilities, the more the companies are going to realise, "Yes, we do have to do this." When I got here today I was a bit early and I went looking for somewhere to go and have a cup of coffee. And every café that I was passing had step-up to it. Somebody would have helped me if I had wanted to, but actually, my point was... And I knew that I was coming here to do this today, so I thought, "No. I'm going to go until I can find somewhere I can get into." And I had to go all the way nearly to Tottenham Court Road. I had to basically go, cross over two streets and wheel down.
But if you're with someone it does make it easier. And I would say to people, "When you're first thinking about going out and doing things, maybe do have somebody with you, because that will give you the confidence." But now, yeah, I go most places.
Chris And the world is changing, because businesses want the custom from disability, whatever it may be. I can think of now... You talk about Google. They are mapping wheelchair access around the cities. They're even targeting business now. "Is your business wheelchair accessible. So, if Anne could have gone on an app and go, "Right. Well, that one isn't. That one isn't. Oh, I can get in that one." Then people would get Anne's business.
Airbnb, they are delivering accessible accommodations. They are also delivering accessible experiences on their website. So we have a situation, where we have our cities, our attractions, our businesses all gearing themselves up for those in a wheelchair, anybody with a disability, and trying to get them in there. They are trying to change. They are trying to confirm. However, the travel is letting us down and that needs to change.
Neil Final question. So you get one wish, one wish to make traveling life easier, either for yourself or others. What would it be?
Chris Well, mine is going to be obviously air travel. And the magic wand, which I'm trying to make happen in a Harry Potter kind of way is that my son and my daughter can just drive on an aircraft, fly to their destination, and just drive off it. It's as simple as that and I'm trying to wave that magic wand at the moment to make that happen.
Anne Well, I'd just eliminate steps.
Anne I think everywhere. Then we...
Neil Well, but they did a great song. "Tragedy" was brilliant. You can't do this, Anne! Poor H.
Anne Get rid of steps.
Neil Is it that simple?
Anne Well, it would make my life a lot easier. If there wasn't a step, or two steps, to get up and down, on and off a train, if I could just wheel straight onto a train, if I could just wheel straight onto a bus, if the bus could pull up to the curb and then there was a little platform that came out when you press a button or something, which is what they had on the trains in Finland... So it's been invented. The technology is there.
Chris Yeah. And more than one lift as well would always be good, because lifts tend to break down.
Neil This is your second wish now.
Chris No, no. It's just Anne gets a second wish, because she's done great things like sail around the world. I don't get wishes like this. So train stations need to look at what they have in the way of a backup.
Neil Well, I can't grant those wishes, but it seems...
Chris What? I see so wrong sometimes.
Neil I can't grant those wishes straightaway. But I think the work you're doing is more likely to make it happen than anything else. Thank you, folks. If you want to hear more about Anne and Chris, head to our webpage at irwinmitchell.com/letstalkaboutit. And join us next time, when we'll look at the world of working with a disability. I'm Neil Taylor and that was "Let's Talk About It."