Disabled people often struggle to access affordable insurance. Our research shows that 26 per cent of disabled adults feel they have been charged more for insurance or denied cover altogether because of their impairment or condition. Actress and disability campaigner Samantha Renke, who has brittle bones, shares her experiences.
Whenever I go abroad, travel insurance is always an issue. Given the nature of my impairment, and the high cost of wheelchairs, I wouldn’t dare go on holiday without it. Unfortunately, the lengthy process and the extortionate costs are something else.
Companies ask me the most intrusive questions
When I phone up to buy insurance, I have to go through a 30 to 40 minute interview. They’re not medical professionals at the end of the line but they probe into my health: Are you suicidal? Are you on medication? Have you had operations?
It’s such a lengthy process. You feel anxious. You feel interrogated. It really infuriates me because non-disabled people don’t have to disclose their mental state. Non-disabled people don’t have to disclose how much alcohol they’re going to consume. Why should disabled people be interrogated?
With brittle bones I get asked if I have scoliosis, a condition where the spine twists and curves to the side. My spine has been straightened and there is no issue, but this isn’t taken into consideration.
My travel insurance is almost as much as my flights
Then the final quote I receive is through the roof. When I went to Mexico for two weeks the quote came out at nearly £500, which was nearly as much as my flights.
I’ve always been able to find a way to pay the extortionate cost for travel insurance, but I know a lot of people wouldn’t manage. I wouldn’t go on holiday otherwise – I just wouldn’t risk it.
Ironically, I tend to be more vigilant on holiday
The irony is, with me having brittle bones, I’m not going to get on a jet ski! Disabled people on holiday are more likely to be hyper-vigilant because you’re not in your comfort zone.
I think attitudes towards seeing disabled people as ‘high risk’ needs to stop. Anyone can have accidents on holiday, anyone could die on holiday. What’s the justification for the high prices?
Hopefully things will change and disabled people will be able to ring up any old insurance company and get a quote like everybody else!
Nadia is 24 and lives in West Yorkshire. She’s a student and a campaigner with Scope for Change – Scope’s training programme for young disabled campaigners. Nadia employers her own personal assistants and last year, she won an Employer of the Year award.
She told us what this meant to her, what she looks for in her employees and how they support her to live a busy, independent life.
I’m profoundly deaf and I have cerebral palsy. To communicate, I use a communication aid called DynaVox. I can also sign British Sign Language but my body physically limits my signing. I’ve been employing personal assistants with the help of my family since I was eight years old. I started off with two or three and now manage a team of eight, as well as one volunteer and a communication support worker.
With support from my team, I can enjoy a busy life
I volunteer at a college and I like to meet friends, go to concerts, festivals, weekends away, travel and go for cocktails. I also need support to go to conferences, events and college. My team help me to be independent. For example, I’m planning a backpacking trip around Europe. They also help with everyday life including personal care, showers, writing and communicating, feeding and dressing me. All of these responsibilities are done respecting my autonomy.
I like to recruit personal assistants myself
I find staff through advertising on the internet. I also use Facebook groups, Twitter, Gumtree, the deaf community and students learning sign language.
I’m often pre-judged so I feel it’s better to meet people myself. I like to meet face to face and assess their skills. Employing my team myself, as opposed to through an agency, means I can plan my life how I want. If I want to socialise until 2am, I can arrange it. If I plan something that others may think is impossible, I have a fantastic team that will work with me to make it possible.
I look for people with similar interests, open personalities and honesty. I welcome diversity. I like people with skills in deaf awareness, signing and good receptive body language. I also need people who understand my thoughts and how I process language, someone with a good sense of humour, who can think quickly if problems arise. My team have supported me at the best times, but also at some of my worst times.
Working together with my team, we get to know each other well. I support my team emotionally, with advice and through training. I also plan nights out which my team are welcome to join and this builds relationships.
I’ve had moments I will always remember
In 2015 I visited London. I was going to the Houses of Parliament to give a speech with Trailblazers. Afterwards, we were at St Pancras station and there was a man playing the piano. He was an old Italian man and he sang a song called ‘That’s Amore’. My personal assistant, Sam, signed and I danced with my electric wheelchair. We were in the middle of the train station. I felt so happy and free.
Then we went to King’s Cross Station and I saw what looked like a big birdcage lit up with different colours. We went to have a look and saw that it was a swing. I told Sam to go on it and she said “No, you get on it!”. I felt safe so I agreed. She got me on the swing and held me while pushing. I felt excited and it was so different. Every day I’m sat in my wheelchair. I felt air on my legs while I was swinging and I laughed so much. I will always remember that experience.
I was so proud to win an award
This year I was nominated for an award – “Best individual employer who employs their own care and support staff”. The event organisers were Skills for Care. On the night of the awards I had a headache, felt so sick and I wanted to go to bed. My clinical support worker persuaded me to stay for the results. When they announced that I had won, I was surprised, happy and proud.
Emily Yates is an accessibility consultant, travel writer, presenter and freelance disability awareness trainer.
For 30 Under 30, we chatted to her about her involvement in making Rio 2016 more accessible for all, and her hopes for the legacy of the Games.
My passion for travel and accessibility started when I volunteered at the London 2012 Games as a Games Maker. I was invited to a press conference and Seb Coe happened to be sat next to me. I said that the Paralympics had “lifted the cloud of limitation for people with disabilities” and he re-quoted that in his closing ceremony speech. I thought to myself “Wow, if there’s ever been an opportunity this is it!”
So I called his office to ask if he could spare 15 minutes of his time and he very kindly said yes, and gave me so many contacts. I managed to get a meeting with the British Consulate in Rio, and with some Brazilian NGOs. This was back in November of 2013, and Rio was nowhere near ready for the Games at that point, but I so desperately wanted to work towards writing an accessible travel guide to 2016 and beyond.
Being an accessibility consultant for Rio was an amazing experience
Whilst out there, I was invited to a large meeting, run by the organising committee, to give a presentation on my experiences as a volunteer but also as a disabled person. There were members of staff there, volunteers, secretaries of state, ministers for people with disabilities; it was pretty nerve-wracking! A man called Vivaldo Rangel also attended to represent MetroRio – Rio’s equivalent to our Transport for London – and after my presentation he invited me to work as an accessibility consultant for them in the lead up to the Games. He ended up changing my life and I have so much to thank him for.
I worked with MetroRio for nine months, advising on everything from installing and modernising elevators, to equipment for those with visual and hearing impairments, bilingual signage and step-free access for those with disabilities, parents with small children and the elderly. I worked with architects to plan the layout for the new metro stations leading to the Olympic Park, but I don’t know if they’ll be finished in time which is a real shame. Vivaldo and I also trained some of the MetroRio staff in disability awareness (in an interactive and bilingual session!). It was really a truly wonderful job to have, and I have so many fond memories of my time there.
Writing an accessible travel guide with Lonely Planet
After my consultancy work I got in touch with Lonely Planet and asked if they’d thought about writing an accessible travel guide to the Rio 2016 Games. After some crazy email conversations with their accessibility manager, Martin Heng, I’ve just been out to Rio and written it, and it will be out in the next couple of months – how exciting! It’s what you’d expect from a ‘normal’ travel guide, but also has plenty of accessibility advice regarding places to eat, party and sleep, as well as the big tourist hotspots like Christ the Redeemer and Sugarloaf. Fingers crossed it’s really useful to all who use it!
The guide is being distributed free of charge so anybody can download it as an e-book. The International Paralympic Committee have also endorsed it so we’re printing 2,500 copies for them to give to athletes and their families. My ultimate dream would be that it really changes things for disabled locals as well.
Researching for the guide was a real eye-opener
Writing the guide was a really good learning experience for me as both a writer and a wheelchair user, as I slowly felt myself experiencing Rio as a local, rather than a tourist. At MetroRio, I’d got taxis or the underground to work, spent a lot of time in the office or advising in stations with Vivaldo, and then I’d gone to my apartment to sunbathe, go out with friends or sleep! Travel writing is an incredible job, and it was a very different experience to the one I’d had with MetroRio.
Firstly, I was alone, and whilst I was reviewing some amazingly accessible attractions and museums, I was also spending so much time trying to navigate Rio’s layout and districts, some of which are so different to the pretty inclusive Zona Sul, or South Zone, that most tourists stay in and I knew so well. It did open my eyes to how difficult travel can be if you have a disability, especially if you are living in Rio and have to navigate similar things on a daily basis, rather than for a two week holiday.
What’s really special is that my time writing for Lonely Planet has really changed my own perceptions of my own limitations and capabilities. When it comes to large curbs and flights of stairs, I’m pretty useless, but I’m now great at asking a local for help in Portuguese! I feel that I have a duty to make sure whatever I’m doing is always helping to change the perceptions of others, too. It’s really important that disability has positive representation wherever possible, especially as this may be the only experience of disability the new people I meet might have had!
Why representation is so important
The Olympics and the Paralympics are so well publicised on a global scale. The more positive stories and anecdotes about disability and access that surround major events like these, the more likely it is that other businesses and companies at home and abroad will take notice.
I hope that CEOs of businesses watch the Games and start thinking about how many disabled people they’re employing and whether their workplace is accessible. This might be a ‘big ask’, but I’d also like to think that politicians will watch and remind themselves that what they need to be doing is ensuring that disabled people have enough support, equipment and resources to continue reaching their potential, be that in sports or other fields(!)
Advice for anyone with a disability going to Rio and the Games
First and foremost, remember that Rio is not the UK, and that patience will have to be exercised around accessibility, however annoying that may be. Anyone going to the Games will find that Brazilian people are ridiculously warm and friendly; you’ll never be waiting for more than thirty seconds for a bit of assistance!
By reading the Lonely Planet guide, contacting people ‘in the know’ and doing a bit of planning and preparation, you’ll be able to have a really amazing time. Book any flights and accommodation now, as time is running out and prices are soaring!
Martyn Sibley is the CEO of Disability Horizons, and a wheelchair user with Spinal Muscular Atrophy. Martyn is an experienced traveler, and on March 30 is launching Accessible Travel Week. He hopes it will help more disabled people take on the challenge of exploring the world. In this blog he shares some of his top travelling tips.
Have you ever wanted to travel the world but let your disability stop you? Do you fear that travelling with a disability will be too stressful, time-consuming and problematic so you just stay at home instead? Do you wish there were some simple resources on accessible travel to make it smooth, effortless and straightforward?
I know exactly how you feel. For years I let that stop me from pursuing my dreams and travelling around the world. There were so many countries I wanted to visit. I was constantly jealous of seeing my friends and family boast and show me pictures of where they went on their adventures, but the thought of travelling with all the extra equipment (like my wheelchair) and all the extra arrangements I needed was just too stressful and overwhelming.
There are so many aspects to consider when travelling with a disability. Accessible travel can cause some real difficulties. I’m not going lie to you and say accessible travel is a walk in the park and you have nothing to worry about. I’ve faced countless problems, barriers and difficulties when travelling. Here are just a few examples that might sound familiar:
Just simply getting on and off the plane. I’ve travelled with countless airlines, and some just haven’t thought about those travelling with a disability. The worst start to your holiday would be realising that your airline can’t fully cater for your needs, or they’ve lost or destroyed your wheelchair.
A hotel they say is accessible but isn’t fully accessible. There’s nothing worse after a long, uncomfortable, stressful flight than arriving at your “accessible” hotel and realising there are in fact a few “small” steps, a bathroom not big enough for a wheelchair or even a bed that’s too high.
Not knowing which venues or sights are accessible when you arrive at your destination. Numerous times I travelled and didn’t fully research the area, which resulted in not knowing which attractions were accessible while I was there. Not only did this stress me and my carer out, it also wasted a lot of time, meaning I wasn’t able to visit as many places as I initially hoped for.
Not knowing how to travel around the destination. This is something many people don’t think about before they travel, but is essential. My first holiday abroad I had absolutely no idea how to travel around, I didn’t know any taxi numbers and had no idea of the bus systems. It wasn’t until I arrived that I realised that many of the paths were cobbled, making it extremely difficult to travel in a wheelchair.
Arriving at your destination and realising you don’t have or can’t access some vital equipment such a manual hoist, a shower chair or a profiling bed. Trust me, this is the worst thing that could happen on your holiday, and unfortunately it’s happened to me! In my circumstance it wasn’t a case that I had forgotten to bring one, but the fact that my hotel ensured they would be able to provide one, and then let me down.
Introducing Accessible Travel Week
I am here to help you follow your dreams and go on that holiday you’ve always dreamt of going on. In order to do that, I’m running an awesome social campaign called Accessible Travel Week, where we will give you the lowdown on how to travel with a disability in order to have a stress-free, easy and relaxing accessible holiday.
Throughout the campaign I will specifically help you through the various aspects of planning a holiday of a lifetime. I’ll provide you with vital information on:
How to find accessible accommodation in your chosen destination; what to look for and what questions to ask to make sure you have everything you need. We have an interview with Holiday Inn, who have agreed to show us some of their awesome accessible accommodation, so we can show you what’s possible when you find the right place
How to get all of the information on the best way to travel around your destination
How to go about air travel with a disability. We have an exciting collaboration with Virgin Atlantic to show you all the various equipment and solutions there are for accessing air travel with a disability, regardless of what airline you use
Information on how and where to get all of the equipment you need, so you don’t go without your disability home comforts
During the campaign you will also find handy tips and advice, words of warnings and at the end, I’ll introduce you to something I’ve been working on that may help you take the holiday of a lifetime.
Because after all, why should we hold back on a holiday of a lifetime just because we have a disability? Travelling is not just about relaxing by the pool, it’s also a time to find peace, happiness and solace.
It took me years of persuasion, courage and determination to start travelling, but I can honestly tell you it’s the best decision I’ve made, and I am here to ensure you create memories that last a lifetime.
Accessible Travel Week is part of something I’ve always wanted to do. It’s my dream to make travel, accessible to all disabled people, so it would mean the world to me if you could check out the campaign. I sincerely believe it will help you.
Scope’s End the Awkward campaign has been highlighting some of the awkward situations disabled people find themselves having to deal with. Here Rosemary Frazer, our Campaign Manager, writes about some of her more difficult taxi journeys.
I’m a wheelchair user and as much of London’s public transport system is inaccessible to me, I take lots of cabs, especially to and from work.
The vast majority of cab drivers I meet are absolutely wonderful and couldn’t be more helpful in getting me in and out of the cab. But occasionally I will get the odd (and I mean odd) cab driver who will say something which leaves me dumbfounded and wishing I was anywhere else but in the back of their cab.
“I’m a cab driver not a bloody ambulance driver!”
The first incident I remember was when taking a cab from my office to a meeting. The cab pulled up and I asked the driver to park a little closer to the kerb to make it easier to get in the car.
“I’m a cab driver, not a bloody ambulance driver!” was the response.
I was so shocked and told him I didn’t want to get into his cab because of his attitude and would order another. I took another cab and arrived late and quite angry at my meeting.
“I suppose you were in there spending all your benefit money on booze.”
On another occasion, probably my favourite, a cab picked me up at a pub where I’d gone with colleagues to celebrate the end of a project. I got into the cab and the driver’s opening remark was:
“I suppose you were in there spending all your benefit money on booze.”
‘Oh dear!’ I thought, poor man, he doesn’t know what he’s let himself in for! From Islington to Bow he sat in silence as I lectured him on disabled people and the additional costs we face, providing statistic after statistic on how the benefits some disabled people receive go nowhere near meeting the additional costs we incur.
I think it’s fair to say he won’t be broaching that subject again with a disabled passenger!
“How long have you been crippled?”
The latest incident was just last week when on my way home from work the cab driver asked out of the blue,
“How long have you been crippled?”
It really took my breath away. I asked him to stop the cab and I paid and got out. I just couldn’t remain in the cab any longer and pushed myself the rest of the way home.
Why am I sharing my experiences?
When I tell other cab drivers about these experiences they are absolutely furious and always say I hope you made a complaint.
For me such comments no longer have any lasting impact but I worry about people who have recently become disabled and who are perhaps out for the first time in their wheelchair. Such comments can and do rock a person’s confidence and may make them reluctant to venture outdoors or take a cab for a long time afterwards.
I was telling a cab driver I know quite well that I was thinking of writing about my experiences and he said you absolutely must as cab drivers need to know what not to do or say and there isn’t much training provided.
All passengers should be treated the same way and no one should make assumptions about our lives. When in doubt about the support to offer, of course it’s ok to ask, but think about the language you use. Hopefully reading about my experiences will help make journeys less awkward.
Guest post by Emily Yates, a travel writer, disability awareness trainer and consultant – she’s currently working on accessibility in Rio de Janeiro ahead of the 2016 Olympics. Emily is sharing some of her awkward moments as part of our End the Awkward campaign.
My boyfriend is really into his mountaineering and is currently training for an ultra-marathon. He recently ordered a treadmill to help him on his way, and arranged for it to be delivered to the house during the day. He was at work when the delivery man turned up and rang the bell, but I was home and opened the door to let the guy in.
When he saw me sat there in my wheelchair smiling at him, he almost dropped the treadmill and ran for the hills! He was so visibly shocked and worried he’d got the wrong house number – how could I, a girl with cerebral palsy, use this running machine?!
After apologising and assuring him this was the right house and my boyfriend had actually placed the order, we were able to giggle about it. And of course, I texted Rob straight after to tell him of my awkward, but hilarious, ten minutes
A magnet for awkwardness
For some reason, my disability and the fact I always have bright clothes and hair seem to reduce the need for people to give me personal space. Maybe I’m just a magnet for awkwardness!
Guys seem to think it’s totally acceptable to come up to me in a bar and ask whether or not I can have sex. My response? Yeah, I can mate, but I won’t be having it with you!
I’ve let go of my wheelchair whilst transferring into my car, and watched it roll across the car park at ridiculous speed before smashing into someone else’s vehicle (oops!).
And the other day, I was in Starbucks and struggling to open a ketchup sachet for my sausage sandwich. After not succeeding with my hands, I put the sachet between my teeth and pulled. No luck. I must’ve been quite obviously struggling as a man came over to me, took it out of my mouth, battled with it himself then handed it to me, a victorious look on his face (and probably a reasonable amount of my spit on his fingers).
In one respect, this guy made my day with his problem solving, but really… Who does that?
So, tips to help us all be less awkward: If you want to get your leg over, try and build up the atmosphere just a little bit first. Don’t be surprised when the product you’re delivering to a house isn’t fit for a wheelchair user. And absolutely allow everyone to keep their ketchup to themselves.
Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier.We hope it will inspire more innovation in the disability field.
What is it?
We all love to talk about how stressful travel in London is – particularity on the underground. Our usual complaints (the sights, the smells, the tourists standing on the left) pale into insignificance when compared with the challenge of navigating the system with a visual impairment.
Wayfindr is an app that aims to help blind and visually impaired people to use the London Underground (LU) more easily and independently, by giving the user accurate audible directions as they make their way through the station. A trial has just been undertaken at Pimlico station, and the hope is that if successful it will be rolled out across the LU and other transport networks.
“When I tested the app at Pimlico last week for the first time it was awesome, it made me feel free.” Courtney, Royal London Society for Blind People (RLSB) Youth Forum member.
Who did it?
The project was born out of the Royal London Society for Blind People (RLSB) Youth Forum, which in March 2014 highlighted travel as a key issue. They collaborated with ustwo (a studio which builds digital products and services) to develop the Wayfindr app. After an initial trial RLSB and ustwo approached LU to see how they could use this technology.
How does it work?
Bluetooth ‘iBeacons’ transmit signals that are picked up by the Wayfindr app, which uses them combined with ustwo’s positioning technology to work out where the user is. From this information the user is given audible directions which guide them around the ticket hall, down stairs and escalators, and onto the platform. Directions are received though bone-conduction headphones, which are unique as they allow users to continue to hear what’s going on around them.
Young visually impaired Londoners involved with the charity were involved in testing the Wayfindr app. Feedback was positive, with those who were initially insecure reporting feeling more confident at the end of the trial sessions. There were some constructive points that will be addressed in future trials, and more iBeacons would need to be put in place before it can be used more widely.
The results of the trial will inform how this technology could work on the underground, to help fulfil the ambition of standardising all this technology and make it seamless across the transport network. Ustwo are also aiming to try out Wayfindr with multiple modes of transport, using various technologies to complement beacons for more accurate navigation.
If it is rolled out, it would offer a simple way for thousands of people to navigate public transport, making a dramatic difference to visually impaired people’s lives.
Why we like it
This ground breaking trial has been driven directly by a group of young people and the real issues they face, and has been achieved through close collaboration between charity and private company. We love how this technology is being developed on an open basis, to allow other developers to take the technology forward and build apps that work with the beacons. We hope the results of the trial mean that this is adopted across the London Underground and that other transport providers are encouraged to invest in this area.
This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.
Guest post by Jean from London. Jean has Ehlers-Danlos syndrome, a painful condition which means she is prone to muscle tears and dislocated joints. She uses a wheelchair most of the time. Jean is an active campaigner for disability rights. She is sharing her story as part of our 100 days, 100 stories campaign.
At the beginning of 2013, I had to put a complaint in to a London bus company because a driver refused to deploy the ramp and let me on.
Instead of dismissing my complaint, the company actually asked me to go in and speak to the management about how disabled passengers should be treated.
Then they asked me to go in again and speak to the bus drivers – and after a couple of months they said, “How would you feel about us paying you for it?”
Before that, I hadn’t been able to work for seven years. Part of the time this was because I was unwell, but for a lot of the time it was because employers weren’t prepared to support my needs or make adaptations.
A couple of places I applied even offered to give me an interview, but then withdrew the offer because their offices weren’t wheelchair accessible. It was ridiculous.
My new bosses have been really supportive, even offering to contribute towards a new reclining wheelchair, which I will need at work.
However, when I applied for funding from Access to Work for a support worker and a better wheelchair, I was rejected.
One of their reasons was that I wouldn’t be working enough hours, and would still need to claim benefits. But how am I supposed to build up my hours, and start to come off benefits, without the right level of support and equipment?
At the moment, my fiancé has to take me to work and act as my carer. It is difficult – we find it hard to balance his being my partner and being my employee. When he doesn’t do things how I want them, it feels very hard to tell him so.
Add in his own health issues, and wanting to pursue his own interests which have to constantly be put on a back burner, and it causes conflict in our private time.
I felt this was unfair so I appealed, and with the help of my MP I was successful in getting funding. I’m now in the process of finding a support worker, and Access to Work also paid towards the cost of the wheelchair and a small travel allowance.
I’ve looked at how the company views and treats disabled passengers, and made some recommendations for improvements.
I’ve also run disability awareness training for bus drivers. We simulate various impairments – such as being blind or mobility impaired – and ask staff to try to move around inside the bus while it is in motion. It demonstrates how difficult travelling can be for disabled passengers.
I go to conferences and events, and we do a lot of work with mental health and learning disability charities.
One thing I’ve noticed is that disabled people will come and speak to me because they see me in a wheelchair. The fact that I have an understanding of what their situation might be seems to make a big difference.
My work is challenging, fun and rewarding, and it brings confidence and self-worth. I feel like I’m contributing something and making an improvement. Even though the majority of my income is still benefit-based, I am hoping that I can slowly build up my hours.
My employers saw something in me and built a new role around my abilities, and are investing quite heavily in me to ensure I have everything I need to fulfil my potential. I love it.
Justin Skeesuck was the first person in a wheelchair to complete the entire Camino Frances, a 500 mile trek across northern Spain. Unable to use his legs or arms, the 38-year-old could not have completed the journey without his best friend Patrick, or the help of many strangers. Scope’s Campaigns and Communications Officer met the best friends while walking the Camino. We’re republishing the story here as part of our 100 days, 100 stories campaign.
The sun was scorching as I trudged up a steep road with vineyards and valleys on either side. Up ahead I could see some fellow pilgrims, who were moving a bit slower than I was. When I reached them I could see why – one man was in a large off-road wheelchair and the other was pushing him.
Patrick and Justin asked if I’d pull one of the wheelchair’s handles to help get them over the hill. Just this little bit of extra help made a big difference to the visible strain Patrick was under. The road turned into an uphill dirt path strewn with large rocks – so the tactics changed.
I strapped myself into a harness to help pull the wheelchair from the front, while Patrick pushed. We moved along like this for the next hour or so, manoeuvring around large rocks and stopping every couple of minutes so Patrick could rest, and drink or eat something to keep going – he was burning around 10,000 calories a day.
The call to adventure
For more than 1,000 years pilgrims have made the journey through the Pyrenees in France and across Spain to reach the Cathedral of Santiago de Compostela in Galicia. In medieval times the Camino was an important Christian pilgrimage. Today, hundreds of thousands of people make the journey each year for a range of reasons.
Justin was inspired to do the Camino after watching a travel show about the route: “Something inside kind of said this is something I should try, and wouldn’t that be crazy to do in my wheelchair?”
Justin taped the programme, and a few weeks later showed it to Patrick, who said “I’ll push you”.
It took a year for the friends to plan the journey. They had a special wheelchair made and sent over from Canada, and Patrick trained intensely in the gym to prepare to push his friend 500 miles.
Justin has a a rare progressive autoimmune / neuromuscular disease called multifocal acquired motor axonopathy – known as MAMA for short. Justin was an athletic 16-year-old when a car accident triggered the disease, which had been dormant in his body. About eight months after the accident, his left foot started flopping around while playing football.
“It just kept getting worse as months went on; then years went on”, Justin explains. “My foot started flopping around a lot more, (then) I started having weakness in my left leg.”
“By the time I got to college, (the disease) had jumped to my right foot, and I was wearing what are called ‘drop foot braces’ – they helped keep me vertical, so I wore them for many years. And it pretty much stayed to my waist and below, and then I got married and started having children.”
As the disease progressed, Justin added a cane, a walker and eventually needed a manual wheelchair to get around. Four years ago Justin was just getting used to his chair, when the disease jumped to his right shoulder. In just 40 days it spread down his right arm, then down his left: “I lost about 60-70 per cent of my arm strength, and that’s when my life really changed”.
A dark place
“I’m really a half glass full guy. I tend to enjoy life as much as possible, but that was the first time in my life where it was not where I wanted to go. Fortunately I didn’t go there.
“I decided that OK, if this is the way my life is going to be, then I’m gonna make the best of it.”
Justin had been a graphic designer for many years, but losing the use of his arms spurred a career change to become a disability travel consultant
He’s travelled extensively with his wife and three kids, even moving the family to Italy for three months last year. But the Camino has been a different kind of challenge.
Learning to let go
“When you travel with a disability you end up wanting to control things quite a bit – or at least know your parameters”, says Justin.
“But in this case it’s completely the opposite.”
“Working together with Patrick as a unit, I’ve learned a lot about letting go and seeing where the path takes me, and not being so controlled.
“I don’t even know where I’m staying every night, I’ve got no idea if I’ll fit, and I’ve no idea where I’m going to eat. I have no bathroom commode. I have no extra wheelchair for difficult spaces. It’s just me, my bag, and this off-road wheelchair. So I’ve learned a lot about seeing where life takes you if you’re open to it.
“It’s one thing to see your best friend day after day, inch after inch, mile after mile, just slugging to get you from point A to point B.
“But to meet people from all over the world who are just willing to come in and say ‘yeah I’ll push you for a mile or two’ or whatever they want to do, it’s humbling. Some people just come in like a flash in the pan, they’ll help me get up this (hill), and off they’ll go. And some people will stay with us for a week or two.
“It’s truly amazing to see it from the seat that I’m in, to see humanity at its greatest. If you open your heart and your mind and your soul to letting other people in, even for a brief moment, it’s truly amazing.”
The end of The Way
Justin and Patrick completed the 500 mile Camino in 35 days, and were greeted at the Cathedral de Santiago by their wives and a huge group of pilgrims they’d met along the way.
Guest post by Martyn Sibley, blogger, campaigner and co-founder of Disability Horizons magazine. Martyn has spinal muscular atrophy and uses a motorised wheelchair. He spends much of his time travelling the globe and is currently spending three months in Spain.
I find awkwardness comes in a few different forms. Some people are very wary around disabled people, and often people don’t engage with you at all because they’re afraid they might do or say the wrong thing.
In social settings, however – especially where there’s a bit of alcohol involved – people tend to become over-helpful, and you get a lot of unwanted attention. One (rather drunk) guy was so keen to help me onto the bus at the end of a night that he ended up breaking the wheelchair ramp at 2am. Everyone on the bus had to get off and wait half an hour for the next bus, which was very awkward for everyone, and me especially.
Or people will accidentally be patronising, saying things like ‘It’s great to see you out…’ I’ve had a few nights out where someone has tried to take me under their wing as a kind of Good Samaritan, even though I don’t need help and am clearly enjoying myself with friends.
Some of the awkwardness comes from what you might call ‘process barriers’. If I can’t get onto a bus or train because the ramp isn’t working, or there aren’t enough staff to operate it, that’s not the fault of my impairment – it’s the fault of the process that’s been put in place.
I travel a lot, and normally when I’m taking a plane, I’ll get on before the other passengers. However, often the airline doesn’t pull its finger out, and I’ll end up being carried onto the plane and wheeled down the aisle with everyone watching. Because I can’t hold my head up without support, I look different from when I’m settled in my chair, and it gives completely the wrong impression of me. It’s embarrassing for me – and what’s more, it reinforces the impression that disabled people are ‘different’ in some way. And that means people will keep feeling awkward.
Ending the awkward
I’ve been on a bit of a journey over the course of my life in how I feel about awkwardness. When I was younger, I hated any kind of special attention – now, I’ve realised that sometimes it can lead to genuinely interesting conversations, and new connections.
Disabled people have a part to play too in ending the awkward. It’s about accepting that sometimes some people feel awkward, and being confident enough in your own skin to defuse their embarrassment. I try never to take offence where offence isn’t intended, and humour is a great coping strategy.
And I’ve found that just being out there and living life to the full is the best way of educating people about disability. Going out, getting drunk, having fun, pulling doughnuts on the dance floor in my wheelchair – it’s a good way of breaking down those barriers without even trying.