I’m Max and I love all things hiking; being out in nature, camping, wild swimming, even eating noodles every day if it means an adventure, and I was born with a disability.
My upper limb difference is suspected to have been caused by Amniotic Band Syndrome, which means constriction and inhibited blood flow caused my left arm not to develop properly. But not knowing any differently I’ve spent my life figuring out all the two-handed life things and made sure my arm has never stopped me. It doesn’t define me instead, it’s my motivation to push harder, and moreover, to do the things that people don’t expect me to do.
But what has this got to do with hiking?
Everything. Over the past couple of years, I’ve come to realise and accept that it is part of my every day, and the choices I make, even if they’re made unconsciously.
When it comes to long-distance hiking, it’s certainly not just about the legs, it’s an all-encompassing experience.
I choose ‘quick laces’ over traditional because even though I can tie laces, why would I make life harder when long-distance hiking is tiring enough? It’s why I walk with just one walking pole because I literally can’t carry two. And it’s the reason why I have to sleep on the left side of the tent – because you try zipping up a tent and doing up the door toggle with one hand.
Although small hurdles, when you’re tired and just want to concentrate on the hike, food and sleep but you’re faced with many mini battles of ability throughout the day, it can be a build-up of these small things that become the biggest frustrations. So, over the years I’ve been figuring out what I need to do to make my life a little easier to make the biggest differences.
When thru-hiking a long-distance trail, whilst most hikers are thinking about which snacks to carry, I’m thinking about how I will even get to mine. Kept close but impossibly tucked away by a sticky zip just out of reach, or that simple but simply impossible Velcro closure on the backpack with a tiny un-grabbable tab, just one step too far when you’ve hiked 20 miles and can’t open your bag to get to your noodles!
That 5-minute battle with the tent door, sweat beading up, your core on fire holding you up on your unstable inflatable mat, frustration mounting because you just can’t grab the toggle with one hand – in the dark – whilst your mind turns angrily at the tent designer for doing this to you. The frustration is real.
Then again, my disability is what drives me. I will do that damn toggle if it takes me all night. It’s what drove me to start yoga, play netball, learn to scuba dive, and start climbing. And it was part of my motivation for hiking the 2,189-mile Appalachian Trail in 2017.
But sometimes motivation isn’t enough…
The truth is, I hid my arm for most of those 5 months on trail because as frustrating as the physical hurdles can be, sometimes it’s the mental challenges that come with living with a physical, visible disability that is the hardest to overcome.
I covered my arm with a buff most days because I was shy about the way it looked – despite the boiling Virginia heat, despite the friendliness and accepting nature of the hiking community we met and despite the confidence that hiking hundreds of miles gives you.
From the outside, you can’t see the anxiety or understand that when I’m having a bad day I just don’t feel like ‘explaining myself’ or dealing with peoples’ awkwardness or questions, so I hide my arm.
But then a few years ago I re-discovered the charity Reach, a children’s charity helping those with an upper limb difference live a life without limits, and realised that I wasn’t alone out there.
There are children being born every day with an upper limb difference, and just knowing this helped me to begin to embrace my difference and feel pride for the challenges I’ve overcome.
On most days I soar, head held high, proud to be part of a minority who defy the odds when it comes to ability and expectations, whilst there are other days when I still just want to pretend that I’m the same as you. But this I have come to understand is just a part of life and that with most things, the good days will come back around.
April is Limb Loss & Limb Difference Awareness Month
I don’t share this for pity or sympathy, but rather to spread awareness for today’s Reach children so that one day they can hike without hiding – a glimpse at life behind a disability.
Questions are welcome when they come from a place of kindness and empathy and choosing to educate ourselves about the difference is powerful because, in life, we often fear the unknown.
So, next time you see someone with a difference take a moment to consider the potential physical challenges overcome to get them there as well as the invisible mental barriers they may be facing, and if you’re a tent designer, please reconsider the toggle.