A family friend once remarked how lucky I am that my parents brought me home from hospital considering not so many years ago I’d have been destined for life in a home for ‘invalid’ children. Whilst this comment came as a shock, leaving no room for complaint, as I’ve got older I’ve recognised that while progress has thankfully been made the world is not quite ready to fully include those of us with congenital medical conditions. Today discrimination can be nuanced, complex and often born from ignorance rather than malice. The shades of oppression can be faint and hard to distinguish from any limitations imposed by the health condition, especially when it is invisible. Yet, lack of inclusion persists in the nuances of everyday life; lack of understanding, failure to accommodate needs, having to fight for adequate care provision, the 9am-5pm (or longer) Monday-Friday working week, lack of representation in films, TV or the media (or sensationalised mis-representation), unnecessary lost chances and compromises. Institutionalised rejection of difference adds to the psychological burden of living with a congenital condition evoking shame, low self-esteem, anxiety and low mood and imposing unnecessary barriers for people who already have to overcome more than most (Morton, 2018; 2019).
'There is no standard normal. Normal is subjective. There are seven billion versions of normal on this planet.'
Matt Haig, Reasons to Stay.
I like to think of myself as a pretty ‘normal’ person (let’s face it none of us are normal) who just happened to be born with a heart condition. Dependant on a cardiac pacemaker and pioneering medical treatment I’ve required surgical intervention approximately every few years since birth. I’ve always taken responsibility for managing my condition studying hard for many years to create a career that allows me to work flexibly. I accept having less choices and make the most of those available. I learnt as a young child that getting frustrated about things you have no control over only robs you of what life can offer (no gym at school but time in the library instilled my love of books, no active play instilled my love of drawing and writing). At least I’ve never been caught in the rat race having to find my own slow, meandering path. But there is a fine line between taking responsibility for managing your condition and accepting unnecessary limitations imposed by inflexible societal expectations to be like everyone else.
'Being able to feel safe with other people is probably the single most important aspect of mental health: safe connections are fundamental to meaningful and satisfying lives'
Bessel van der Kolk.
We need to develop a more sophisticated understanding of health so people living with lifelong medical conditions are better included (one of the motivations behind our photography exhibition Scarred FOR Life). It is simply not the case that people are either sick or well and this false dichotomy lets us all down. We don’t want to be labelled, just understood and given a chance. My health condition is not who I am, but it can affect how I function, more so when I have to push myself to meet societal norms. A growing number of people are living with complex health conditions and often our experiences have honed resilience, determination, empathy and a greater appreciation of life. We have much to contribute given the chance: