Updated: Sep 10, 2018
This is a more personal post than I usually write, but after hunting around online for anybody else talking about this subject and coming up empty, I thought it might be something worth writing about.
Today I’m talking about life as a landscape photographer with a disability, and the ways I’ve adapted to make sure I can continue to lead the life I want in the most fulfilling way that I can.
When we think of landscape photographers, we usually think of adventurers hiking through rough terrain with a heavy camera pack strapped to their back, people pushing themselves to their physical limits to access remote locations to photograph unique landscapes. We think of those photographers as robust, sturdy people capable of taking everything that nature throws at them.
This is a romantic image that many hold, myself included, but it’s not reality… at least not for me.
I have a condition called Ehlers Danlos Syndrome (EDS), which is a little known disorder of the connective tissue. The particular form of EDS that I have is known as ‘hypermobility type’ EDS, and is the most common form at around 1 in 2,500 to 1 in 5,000 people, depending on which EDS specialist you’re listening to.
I’ll start by saying that EDS is not the same as hypermobility. 1 in 10 people is hypermobile - also colloquially known as being ‘double jointed’. These people can do party tricks to their heart’s content without endangering themselves, and without experiencing pain and disability. Conversely, EDS is a genetically inherited, painful, chronic disorder that includes regular dislocations and subluxations (partial dislocations), joint pain, hyperextensible joints, and early onset of osteoarthritis. EDS also frequently affects skin, digestion, vision, circulation, and the autonomic nervous system.
Life with EDS is different for every person with the illness. It’s a massive spectrum, even within the Hypermobility type that I have. Even within my personal day-to-say experience, I have days where I feel like I can ‘pass’ as being perfectly healthy, and other days where I am entirely disabled. It’s for this reason that I refer to myself as ‘differently-abled’ rather than disabled, because my own abilities are unique and different from one day to the next.
Some days I am able to walk up mountains, endure -20°C, withstand a camera bag on my back.
Other days I struggle to hold up the weight of my own head. I struggle to summon the strength in my hands, wrists, and shoulders to simply hold my camera. My cervical-thoracic junction in my spine may have locked up, a bone in my foot may have dislocated, or a tendon in my shoulder might have gone into spasm after an uneventful night’s sleep. My autonomic nervous system may have gone into a tail spin (a secondary condition called dysautonomia), causing my internal thermostat to go haywire, making me sweat when I’m freezing cold or making me shiver when I’m burning up inside. Sleep isn’t restorative, and it can take days or weeks to recover when something goes awry.
Simply put, sometimes I feel like every system in my body is failing.
So why on earth, when faced with a hugely unpredictable body, would I choose to photograph landscapes? Why would I put myself in harms way? One excursion could potentially injure me and put me in bed for a week, or cost me hundreds in osteopathy and physiotherapy bills.
Honestly, part of the answer is that I’m stubborn, and I refuse to take no for an answer.
Another part of the answer stems from when I was 12, when my body first started to cause me debilitating pain and rendered me unable to walk. My thinking now is the same as it was then: I get one life, one shot at experiencing this world we inhabit, and I can’t let my body hold my dreams hostage. I decided at the beginning that I would always Do The Thing, whatever that thing was that I wanted to do, no matter what. That meant that age 14 I was skiing in Tahoe with my school, having taken special ski lessons with a disability ski instructor. At 25 I was trekking through the Jordanian desert mountains raising money for prostate cancer.
In both cases, I injured myself quite badly. In the case of the former, I had to be carried off the mountain on a stretcher, for the latter I dislocated both knees (and put them back in by myself) half way up a mountain. Yes, it hurt. A lot.
So here I am, on a Thursday afternoon, incapacitated on my sofa, when a week and a half ago I was in the Lake District climbing fells. It’s a hard juxtaposition to explain to people who only ever see the ‘healthy’ me. For the most part, I hide the debilitating days from social media. Most of my close friends rarely see the full effect of my illness, and I’m quite happy to keep it that way.
Recently, while in the Lake District, I had just climbed down off Hallin Fell, where I was photographing Martindale. I had this idea that I really should be sharing the frailty of my body, the struggles that I have, so that others who don’t believe they can be a disabled (or differently-abled) landscape photographer, or who have been told they can’t, can maybe start to see a way to achieve their dreams.
Every disability is different, so my suggestions here may not be applicable to you, but there are always ways to adapt something to your needs. EDS runs in a similar vein to other chronic pain and connective tissue related disorders and disabilities, so these ideas will be particularly of use to you if you have something like fibromyalgia, ME/CFS, osteoarthritis, or something else which results in chronic pain and joint/muscle limitations. Please bear in mind your abilities, and always seek to work with them, rather than against. Always stay safe, while pushing yourself just a little past your comfort zone.
Kinesiology tape and compression
I strap my vulnerable joints up prior to any big hike. I strap my arches and heels, my ACL/LCLs on my knees, and my rotator cuffs. I'll tape up my whole body if that's what it takes to get out there and photographing. It’s an incredible feeling being all strapped up, and it’s the closest I’ll ever come to knowing what ‘normal’ people’s joints feel like. Moving is so much easier when your joints aren’t busy falling out of place! Compression garments have a similar effect, helping keep my body together.
If you haven't already got a great pair of walking boots, then get yourself to an outdoor clothing shop now. Excellent footwear is non-negotiable, and I recommend allocating the biggest budget you can afford. Try on every pair if necessary. Become firm friends with the salesperson in the footwear department. Explain your particular needs and they'll understand that this is a purchase that you 100% need to get right.
I wear a light weight but exceptionally sturdy Meindl boot with good arch support, some pretty intense tread and ankle support. Being lightweight they don't add much weight or drag on my legs, but they still tick all the boxes. I'm pretty sad that they seem to have discontinued it, but now I've had such an incredible pair of boots I'll know the benchmark for next time.
Adapt your camera bag
I don’t know if I’ll ever find a perfect camera bag… finding one to fit a woman’s body is hard enough! The one I currently carry is pretty good, but I’ve added a hip belt to ensure I’m carrying the weight of my gear in the most sensible way. I seriously recommend finding a specialist camera shop with a wide range of bags and trying them on.
In the same vein - PACK LIGHT! Seriously, stripping weight out of your bag to reduce the challenge of simply being out there walking with a camera bag is a massive help. Get all your kit out, weigh it all, and keep track of where your comfort zone is. I know I can take a camera body plus two lenses (when in a proper bag with all the appropriate straps and belts) without putting too much stress on my body. Anything over that, and I have to seriously weigh up the terrain, the photographs I’m looking to get, and how solid my body is feeling that day.
Carry a medical ID
Along with all the things that you need to take to make sure you stay healthy, you should ALWAYS carry a medical ID with you. I have mine on my phone, but first-aiders haven’t yet caught up on this and might not check your phone, so you should also carry one on you. A medical ID bracelet is something I’m looking at investing in. If ever I’m out alone, there are important things about my condition that would be essential to convey to anyone trying to help me.
Research your destinations
All photographers should be researching their locations, but none more so than people with mobility issues or any other disorder. Beyond researching the basics, like sunrise and sunset times, cloud cover, weather systems, where to park etc, you should do as much research as possible regarding the accessibility of your location. For me that means planning a route meticulously before setting off, printing things off in case I don’t have signal, checking local hospitals etc.
If I’m in a non-English speaking place, I write down a translation of things I might need to say to a local regarding my condition if I were to get lost, suffer an injury, or ask for any other kind of assistance. I’ve never needed to use this last one, but it’s wise to be over-prepared if you need special dispensation of any kind.
Stay close to your car
Don't push yourself far off the beaten path. I know - we all want to live an adventurous life and photograph the rugged outdoors, but sometimes that means hiking further than your body can allow on any given day. Running the risk of injuring yourself or getting stranded is not a fun idea. You can make great photographs with your car still in sight.
Being able to do this effectively requires a lot of time spent researching and putting Google Street View to good use. It's a great way to check the lay of the land and look for street parking close to your location.
Give yourself time
This last one is one I still have to practice all the time. I don’t have the mindset of somebody with a chronic illness. It always comes second in my mind, so I don’t cut myself the slack that I probably need to. If the hiking route says 4 hours, I need to allow a full day. If I need to take a recovery day (or five), then that’s not a choice, it’s a requirement. We only get one shot at this life, but we also only get one body, and you need to work with it, not against it.
Don’t let your body (or mental health!) stop you from experiencing the world in the way that your heart desires. Know that it is possible. Landscape photography is not the preserve of the able-bodied, and so long as you work with your limitations, you'll find that they really don't have to be limitations at all.
We’re all built differently, so work out the best way for you to achieve your goals and fulfil your ambitions with the body you were born with. The most important thing is to keep putting yourself out there, building your resilience and confidence that you can do it in spite of the odds, and keeping yourself safe and healthy in the process.