by Lewis Hine
By now I really needed to pee. We looked everywhere but there didn’t seem to be any disabled toilets. Mum asked several airport staff, but they all told us the same thing: ‘The disabled cubicles are located inside the ladies’ and men’s toilets.’
‘Well, which one do we use then?’ Mum asked. ‘I have to help him.’
A security guard did offer to take me into the men’s himself, but that was no good because I need Mum’s help to actually use the toilet.
‘In that case, there’s a separate disabled toilet in the next terminal,’ said the guard. ‘It’s about a 20-minute walk from here.’
I couldn’t hold on for another 20 minutes. I was bursting.
Mum could see that I was getting upset.
‘Jess, stay with Lewis,’ she said, marching off into the ladies. She came back a couple of minutes later. ‘I’ve asked every woman in there whether they’d mind if I take you in and they all said no,’ she told us. ‘So come on.’
There were about ten women in there when Mum pushed me in. Everyone smiled, but no one really took much notice of us, which was nice. But as Mum pushed my wheelchair into the cubicle, she burst into tears. ‘Why does everything have to be so hard?’ she cried.
I didn’t know what to say. I felt really sorry for her.
When we came out, Jess told us that she’d overheard a group of airport staff talking about what Mum had done, saying she shouldn’t have let Lewis use the ladies and that she’d caused a scene.
Hearing that brought Mum back to her usual tough self. ‘Forget it,’ she said, blowing her nose. ‘Let’s all just take a deep breath and move forward.’
We went off for a big American breakfast of waffles, bacon, cheese, Boston baked beans and pancakes. It was delicious and cheered us all up, but inside I was really angry. I posted a long message on Facebook when we got to Hawaii, describing exactly what had happened and tagging both the airport and American Airlines before I pressed send. This is how the post ended:
‘This morning is one of the few times my disability has really affected me and my family and it was just because of other people and their lack of knowledge of what it’s like to be disabled. I won’t let this ruin my trip, I will have a great time but I say to these companies, please be educated in the fact that not all disabled people have same-sex carers, and separate disabled toilets give all the amazing disabled people around the world like me some dignity.
‘I would like to invite the executives of both American Airlines and Los Angeles International Airport, and any of their staff too, to come and join me for a day in a wheelchair to help them understand how they can ensure all their customers have a good experience from the moment they arrive at the airport to the moment they fly out.
‘Please share this post to raise awareness of this and hopefully get it changed. Our disabilities make life colourful, they give you the opportunity to think outside the box and be creative and make a difference to help everyone. Please take this opportunity so I don’t have to nearly pee my pants in public again. From Lewis .’
The post was shared 400 times. Most of the messages that came in were from those who’d experienced the same kind of discrimination, but quite a lot were from people saying they’d never thought about the difficulties disabled people face in their day-to-day lives before, and now they would. I never heard anything from the airport or the airline, but I did get a message from an architect who designs public buildings promising to take what I said on board. That felt good. Change happens one small step at a time.
Just 24 hours later, we were watching wild sea turtles in a lagoon in Hawaii. Mum and Jess were in the water, pushing me in a kayak, and the sea turtles were swimming around no more than a metre away from us. They kept bobbing their heads out of the water, like they were saying hello. We tried to be as quiet as possible so we wouldn’t disturb them, but inside we were all bursting with excitement. You never get to experience anything like that in England. I could hardly believe I was there.
I could have spent the whole week watching them, but we were here to work. As Bakken Invitation Award honourees, we were expected to take our social action projects forward, and the purpose of this week was to teach us how to do that. There were talks and workshops every day. In that first session we had to imagine that we’d all been given a canoe. We were then told to picture our end goal and describe how we could use the canoe to reach that goal. When my turn came, I said, ‘My goal is to take Friend Finder global. I don’t have time for a canoe. I need a rocket pack!’
Everyone laughed (and I was known as ‘rocket boy’ for the rest of the week), but I meant it. I want Friend Finder to reach every corner of the world and I want it to happen fast.
And it turned out that this trip to Hawaii has provided the fuel for that rocket pack because it gave me the chance to connect with so many brilliant people. The other honourees came from all over the world. There was Claire from Ireland who set up the Scoliosis Advocacy Network; Clarissa from Uruguay who’s helping to educate people about diabetes; Jason from New York, founder of type 1 diabetes organisation Marjorie’s Fund; Lindsay, another New Yorker, working to raise awareness about sudden cardiac arrest; Hui, who’s working with the Bethune Charitable Foundation to expand access to healthcare services back home in China; and Ismael from Mexico, who volunteers with two Parkinson’s support groups. He was there with his friend and care-giver Diego, and they made us laugh so much. One day we met them in the breakfast room and when we asked them where they’d been the day before, they said, ‘On a helicopter tour. We’re in Hawaii!’ We got on really well with Clarissa and her husband Alejandro too – he had helped Mum get me in the kayak so I could go and watch the sea turtles.
These are just a few of the amazing people we met, and they’d all won the award for creating inspirational social action projects. Everyone was so warm and supportive of what I’m trying to do with Friend Finder that I went back to England feeling I was so close to reaching my goal I could almost touch it. Both Clarissa and Claire said that a lot of the children they work with would really benefit from Friend Finder and have encouraged me to expand the charity in Ireland and Uruguay; Hui promised to do everything he could to help bring Friend Finder to China; and I’m already talking to Diego and his 19-year-old daughter Adriana about holding a Friend Finder prom in Mexico. I am determined to use the connections I’ve made through the Bakken Invitation to take Friend Finder global so I can help people like me all over the world.
I also left Hawaii knowing that I was one step closer to achieving another goal. That $20,000 grant will pay for almost an entire prom, and another AV1 robot like the one I’d received in the summer of 2017. AV1 is the first telepresence robot (that is, one that helps people to take part in events remotely) to be made specifically for kids with long-term illnesses and disabilities. It works with wifi or the 4G network, and is controlled via an app on your phone or tablet. Once your AV1 is turned on, you can move its head using the touch-screen app, see through its eyes and communicate with whoever’s nearby via the microphone and loudspeaker. It was developed by No Isolation, a Norwegian company who create tailored communication tools that help tackle loneliness, and it’s designed specifically to help its users stay connected with school and their friends.
When No Isolation sent us the first one, I started using it to help me at college. It now lives in the classroom during the week; when the teacher does the register and discovers I’m not there, she gets it out and sits it on my desk (it’s less than 30cm high). If I’m feeling up to working that day, I turn it on via my iPad and then I can see and hear everything that’s going on. (Its eyes and head light up so the teacher can see I’m joining in with the lesson.) If I want to ask a question, I just press a button on my iPad and the AV1’s head blinks white lights. It’s just like me putting my hand up. If I’m not feeling so well, I press another button and the head turns blue to show I’m listening, but not up for answering questions. And when my friends go for lunch, they take th
e AV1 with them. It’s made a massive difference to me: I miss fewer lessons so I’m learning more, and I can be part of college life even when I’m at home or in hospital.
AV1 is just perfect for Friend Finder and so my other goal is to get 100 of them for Friend Finder to use. It’s a big ask because this kind of technology doesn’t come cheap. Even with my terrible maths, I know I need to raise serious money. But you don’t get anywhere if you don’t think big.
I took my AV1 with us to Hawaii and we did a presentation with it – we got Jess to sit out in the corridor with the iPad while Mum and I stood in front of everyone with the robot.
‘Jessica isn’t here,’ Mum explained, ‘but thanks to AV1 she can see you and hear you. So – wave, everyone, and say hello!’
I think Jess must have been really embarrassed, because when everyone had stopped waving and shouting, there was a long pause and then this really tiny voice just whispered, ‘Hello.’
We were lucky Jess didn’t say anything controversial.
The day before we’d used the AV1 to play this really hilarious trick on Mum. We were meant to be rehearsing for the following day, so she’d gone downstairs to the presentation room with it, leaving Jess and me in the bedroom with the iPad. The app was on and we could see on the iPad, through the robot’s camera, that Mum was walking along the corridor towards the lift. A man walked past her: it was just too good an opportunity to miss.
‘Hello, sir,’ we said into the iPad.
‘Hello, sir,’ went the robot.
‘Shush,’ Mum hissed into her bag where she had put the robot.
The man gave her a funny look, and then Jess added, ‘Hello, hottie!’
That made him really stop and stare. Thanks to the robot’s camera we could see that Mum had gone bright red. ‘Oh my God, sorry! It’s the robot,’ she told him. ‘In my bag.’
He just hurried away – you could see he thought she was completely crazy. Jess and I were in hysterics as Mum tried desperately to zip her bag closed to shut us up.
I had a perfect opportunity to show off the robot the next morning. There was a networking breakfast with all the top guys from Medtronic, including the chairman and CEO Omar Ishrak, and I was planning to talk to him about sponsoring an AV1. My idea was that companies could pay to have their logos printed on its chest. But before I had the chance (I’d just sat down with my French bun – imagine an iced bun, only heated up), everyone’s phone pinged with the same message:
‘Emergency alert.
Ballistic missile threat inbound to Hawaii.
Seek immediate shelter. This is not a drill.’
Then the hotel’s siren went off, and the TV news on a screen at the back of the room was interrupted with an emergency notice:
‘A missile may impact on land or sea within minutes. This is not a drill. If you are indoors, stay indoors. If you are outdoors seek immediate shelter in a building. Remain indoors well away from windows. If you are driving, pull safely to the side of the road and seek shelter in a building while lying on the floor. We will announce when the threat has ended. This is not a drill! Take immediate action measures.’
It was like the world had suddenly gone mad. Somebody shouted at us to stay where we were, because we were next to the ballroom – also the hotel’s bomb shelter, apparently. But Mum took no notice of everyone else. She grabbed my arm and started dragging me towards the door.
‘Jess is upstairs,’ she was saying. ‘If we’re going to get blown up then I want to be with her.’
I was so shocked, I just followed her without a word.
There were people running in all directions but Mum was just ploughing through them all. She’d stopped being a normal mum and had turned into a power machine.
Finally we got to Jess, who’d seen the text message but hadn’t really registered what was going on until we burst through the door shouting, ‘Jess, where are you? There’s a missile! We’re going to get blown up!’
Then Mum pulled us both close to her and took us back down to the ballroom. As we were all huddling together around a table, I realised that this so-called bomb shelter was actually an open-air ballroom; it didn’t have a roof. That’s when I started to believe we really might be about to die. I know it sounds strange – you’d think we’d have been running around screaming, but now Mum had got Jess and I together, we just sat there waiting for the missile to hit. I think we were too shocked and terrified to talk. I certainly was. I clung on to Mum, who was desperately attempting to get hold of Chloe in the UK, but she couldn’t get a signal. That really upset her – she was dialling the number, repeating, ‘Chloe, I have to speak to Chloe.’ Lots of other people in the room were doing the same, trying to get hold of their families. Jess looked as cool as cucumber on the outside, but I could tell that even she was panicking inside – she kept looking round at everyone else to see how they were dealing with it.
Exactly 38 minutes after the first text, everyone’s phone pinged again.
‘NO missile threat to Hawaii.’
It was over. We were safe. Most people in the room cheered and hugged each other. I had a massive seizure and vomited all over the floor. Mum had to stay and sort me out, but Jess went straight back upstairs to tell her friends at home all about the latest drama.
We found out later that an employee at Hawaii’s Emergency Management Agency had pushed the wrong button when he was coming off shift. Some mistake!
Still, it got us on BBC Breakfast again. Someone had spotted my post about the (non) missile attack on Facebook, and that evening the three of us did a live interview with presenter Ben Thompson from our hotel bathroom. (The light was better in there.)
When Ben asked Mum about what had happened, she came across as calm, but actually she’d been shaky and upset all day – I think all the effort of getting me and Jess in one place and worrying about not being with Chloe had really got to her.
Then Ben turned to me.
‘Maybe you could explain a little about why you’re there?’ he asked.
‘I’m in Hawaii to receive an award,’ I replied.
‘For?’
‘Charity work and stuff like that,’ I said, tongue-tied. It was a massive opportunity to plug Friend Finder, but I’m afraid I blew it. All I could add was, ‘Obviously no one expected things to turn out how they did.’
I was still a bit freaked out, to be honest. I’d spent most of the morning asleep, recovering from the seizure, so I wasn’t thinking straight. Never mind. Loads of people saw the interview and we had all these messages saying, ‘Only you could go all the way to Hawaii and end up on the telly!’ That made us laugh.
Later that evening, I got to meet Earl Bakken, the man who founded the award. It was incredibly inspiring to talk to him. He’s in his nineties and in a wheelchair and is the most amazing philanthropist. He knew all about Friend Finder. That made me so proud.
As he shook my hand and gave me my Bakken Invitation Award medal, I promised myself that I would use this honour to make him proud, too, of what his award had made possible. I also found myself thinking back to something Mum had said in the presentation we’d given the day before (she spoke because my nerves had got the better of me again): ‘Friend Finder is something that started from a small idea in a bedroom. Now it’s actually changing people’s lives.’
It’s true. There’s so much more that I want to do, but standing next to Earl at the end of that totally surreal day, I realised that I have laid a path, with the help of everyone who has supported and believed in Friend Finder. And now all I need to do is walk it. How exciting is that?
My Top Tips for Life
Travelling can be hard for anyone, but if you have an illness or disability, it can throw a whole new set of challenges at you. So don’t be afraid to ask for help or advice. Always call the airline or travel company in advance to see how they can support you.
Make sure you have enough medication for the trip, plus a few extra days’ worth in case you’re delayed. If you’
re travelling to somewhere in a different time zone, ask your doctor when you should take your medication, especially if you’re epileptic like me.
Plan some rest days when you don’t do too much, so you can really enjoy the days you do go out. Everyone feels better for a break.
If you come across things that make your life more difficult than it should be – like I did with the toilets in LA airport – let me know via Friend Finder (Friendfinderofficial.com). Companies won’t know there’s a problem unless we tell them, so let’s tell them. Every change starts with a single idea or one voice; don’t be afraid to be that voice.
When you’re travelling, don’t spend the entire time with your head in your phone or iPad. Look around you – the world is amazing.
If you ever find yourself in the middle of a missile crisis, make sure the bomb shelter you’re hiding in has a roof! And when your life flashes before your eyes like mine did, make sure the show’s worth watching.
Wherever you are, remember to look at the stars!
A Day in the Life: 5th February 2018
9:30am: Mum has just woken me up. I get the feeling she’s been trying to wake me for ages because she was almost shouting, ‘Come on, Lewis!’ I tell her I’m too tired to get up and that my back and legs really hurt, but she reminds me that I have to go to Great Ormond Street Hospital today for a brain scan.
10.34am: We’re on the train from Havant to London Waterloo. It’s a pain being in a wheelchair because you have to ask the guard to get a ramp and let you on, and then you have to hope that no one’s sitting in the space reserved for a wheelchair. It’s quite a big space so people often put bikes and things in there.
12 noon: We’ve arrived at Waterloo. We’re both hungry, so we head to Marks and Spencer for a sandwich and packet of crisps. We’ve given up trying to use the tube – it’s just too hard in my wheelchair, and even when I’m walking it’s too hectic for me – so we go and find a black cab. Mum asks the driver if he minds if we eat our sandwiches in the back and he says it’s OK. We start chatting and I tell him about Friend Finder. He sounds really interested and when we get to Great Ormond Street, he says, ‘Black cabbies often help with things like this so if any children from London are going to the prom, I’m sure I could get some drivers to take them for free.’ Then he rips off the corner of a newsletter and gives it to me. It’s the contact details of the black cab central office. How nice is that!