Daniel Moore is a farmer's son from Northumberland, and has worked in the fields of fostering and children's disability. He has a multi systemic neuro-immune condition called Myalgic Encephalomyelitis (M.E.) He has lived in Nottingham for the past 17 years and enjoys photography and writing blogs and poetry.
Growing up on a farm is a unique experience. There are so many advantages. We now know that giving children the opportunity to explore nature is hugely beneficial to their cognitive and social development. I think perhaps the great outdoors speaks to our deep inner self and is a great mechanism for children and adults to become more centred, mindful and embodied. Before I became ill at age 10 I remember ‘looking the stock’ with my dad and trying to keep up with his long purposeful strides and believed that I would perhaps one day be a farmer on the land I loved. All that changed when I became sapped of energy and largely confined to the farm house. My body inflicted me with migraines, light and sound sensitivity and cognitive impairment. I remember on some days looking out to the fields with longing until eventually my desires had to be minimised to such an extent that my hopes had to fit within what I was capable of.
Now, a quarter of a century later, I find myself faced with similar challenges as my body, once again, is out of line with my hopes, plans and the things I love doing. Two of my favourite things are going to gigs and football matches. ME is a cruel condition where one of its main defining features is something called Post Exertional Malaise. It sounds like something you might feel after a Sunday afternoon country walk but I prefer to call it ‘the aftershock’. Any activity has an exhaustive effect and if you have enough energy to do something you love, then it's likely that doing that thing may mean you won't have the energy to do it again for a long time. Consistently doing that thing may even contribute to you being confined to your bed on a permanent basis.
When I became a social worker I learned about the importance of the social model of disability, whereby society itself is disabling and needs to adapt to allow disabled people access through physical changes to the environment and engaging minds to help society to empathise and take action to become more inclusive. Often this is about simple language. The difficulty with ME and this model is that ME doesn't fit the narrative. Often my legs don't carry me far before they become wobbly and I'm close to collapse. It isn't though, as simple as rocking up to the football in a wheelchair (although I understand that often this isn't simple at all!) The exhaustion and sensory overload that comes with ME means that just the thought of being at the football is exhausting. Even if I did have the energy to go and enjoy the match at the time, and it was a rare day where noise and busyness weren't too over-stimulating, the impact on me could set my energy levels back for weeks.
When something seemingly as simple as going to a match is out of reach, as a bloke you start to analyse your own masculinity. The farm is a very physical environment and if I'm not careful I can start to carry guilt for not being able to support my Dad in his work. The other day some sheep escaped and I naturally started chasing them but very quickly my body caught up with my brain! My head started spinning and my heart was racing. One of the biggest challenges for me in living with ME, is being secure in my own masculinity despite my physical weakness. This means deconstructing traditional narratives of masculinity, especially the feeling of responsibility to provide for the family. I find mindfulness is really helpful for being in the present and allowing me to accept my limitations. Celebrating small achievements and practicing gratitude are also beneficial. Once this frequent hurdle is passed, I'm more able to enjoy being a nurturing father and know that my value is found in who I am, not what I do.
Men, please know: any physical weakness does not reflect your masculinity. Your strength is not found in bench presses or the speed in your legs.
What does masculinity mean to you whilst living with a disability? How do you manage feelings of failure and are there things you do regularly to practice positive mental health? Let us know in the comments below!
