'Every choice has been dictated by my health condition'
Since birth I have lived with a serious, lifelong heart condition, dependent on a cardiac pacemaker and pioneering medical treatment. Professionally I did not ‘come out’ until my early 30’s. While I’d always made my educators and employers aware of my condition, I consciously made the decision to minimise it. I navigated my education and work, despite frequent gaps and debilitating chronic fatigue, without asking for additional support lest I be seen as needing ‘special treatment’. I’d learnt the price of inclusion was to hide my condition, as best I could, internalising discrimination.
My condition is largely ‘invisible’, the scars easy to conceal. Yet, I have never gone more than a few years without requiring cardiac surgery, including five thoracotomies before the age of 7 and open heart surgery aged 12. Most recently I spent over a month in hospital, during the summer of 2018, awaiting complex surgery to replace leads and fit my 11th pacing system. My life involves emergency trips to hospital, frequent, invasive and painful medical procedures and countless hospital stays. My heart rate was set at a debilitating fixed rate until the age of 12, thus limiting physical exertion which meant that I had to sit out during gym lessons and active play. But what happened to me in the hospital stayed in the hospital, my experiences so far removed from my peers there was no common ground to share (Morton, 2015).
Living with a serious condition in this way is challenging, whether it is physical or mental. Having to do so in world that is not designed for you can be overwhelming; the opportunity to reach your full potential always out of grasp. Arguably, as a profession, psychology should be leading the battle for social justice. But are we?
Long-term conditions and disability
Disability is defined as ‘a physical or mental condition which has a substantial and long-term impact on an individual’s ability to do normal day to day activities’ (Equality Act, 2010). Over 7 million people, or 18% of the working-age population in the UK, are disabled (Employers' Forum on Disability). Further, about 15 million people in England alone have a long-term condition (defined as a chronic health condition for which there is currently no cure). It is notable that long term conditions are more prevalent in lower socioeconomic groups (Department of Health, 2012; Barnett et al, 2012).
Yet while disability is a common human experience, likely affecting most of us either directly or indirectly, it is rarely discussed in our field (Bogart, 2017). Perhaps in part because we are underrepresented in both academic and practitioner psychology groups. Less than 4% of academics (Equality in Higher Education UK: Statistical Report, 2016) report having a disability while the American Psychological Association reports that 3% of the psychology workforce have a disability (American Psychological Association, 2018).
Ableism – the assumption that such individuals need to be ‘fixed’ whilst treating able-bodied people as the norm – leads to a society organised to accommodate the majority (for example, an expectation to be able to work 9-5, full-time). In addition to any physical or psychological symptoms resulting from their condition, individuals with a disability share a number of disadvantages with other minority groups including disparities in civil rights, discrimination, income, education, employment and underrepresentation in the media and politics (Bogart, 2020). An inclusive society attempts to address this imbalance of power by promoting full accessibility and tackling exclusivity, as possible (Bogart, 2017; 2018).
Congenital Heart Disease a hidden ‘disability’
Congenital heart disease (CHD) affects approximately 1% of live births, with similar prevalence worldwide (Chen et al., 2018) and describes any cardiac condition present at birth. This heterogenous group comprises people with a wide range of cardiac conditions ranging from simple to great complexity. Medical and surgical advances mean that 90% of infants with CHD now survive into adulthood compared with just 20% in the 1940s (Warnes et al, 2001). Yet, there is no cure for complex CHD and lifelong treatment is indicated (Greutmann et al, 2015).
In addition to the physical limitations of CHD and an increased mortality and morbidity burden, this growing population are at risk of mental health problems, psychosocial stressors and neurological sequelae (Bromberg et al, 2003; Czosek et al, 2012; Deng, 2016; Kasparian et al, 2016; Kovacs and Utens, 2015; Karsdorp et al, 2007; Greutmann et al, 2015; McCusker et al, 2010; Meentken et al, 2017; Morton, 2011; Morton, 2020d; Morton, 2019c; Mussatto et al, 2014; Ringle and Wernovsky, 2016; van Rijen et al, 2003; Verstappen et al, 2006). Members of this population face difficulty accessing recommended specialist care provision (Wray et al, 2012) while psychological support remains poor or non-existent (Morton, 2020d).
Individuals with CHD often face many psychosocial challenges such as repeated cardiac surgeries and hospitalisations, living with a cardiac device, transplant, feeling different, uncertainty about prognosis, navigating a hidden disability, impaired peer relationships, parental overprotection, school absences, physical limitations, body image issues, bullying, difficulty having and raising a family and reduced quality of life (Chong et al, 2016; Dempster et al, 2017; Kovacs, 2009; Verstappen et al, 2006). A range of studies have demonstrated a negative impact of CHD on both educational attainment and employment status (Kamphuis et al, 2012; Zoomer et al, 2012). Gong et al (2020) report that compared to healthy adults, even among the healthiest adults with CHD, there are significant decrements in life expectancy, employment, and lifetime earnings.
As a Counselling Psychologist my training and practice encompasses a focus on ‘Reflective Practice’ including mandatory personal therapy. Following intensive therapeutic input, during which I was able to process extensive medical trauma, I felt able to face my shadows and find my voice, becoming a vocal advocate for improved care and psychological support (Sutton, 2015; Freeman, 2014). My personal growth has influenced my professional journey leading to various research collaborations grounded in a passion to promote what I have termed Psychologically Informed Medicine (Morton, 2020d; 2020c; 2019a; 2019c; 2018; 2015, 2012).
I’ve always taken ‘personal responsibility’ for managing my heath condition and self-management is essential to living well with a serious, lifelong medical condition. But, I have started wonder how many of the challenges that I’ve faced have been imposed by the limitations of my condition and how many have been imposed by inflexible societal expectations.
Some way to go
Sure, we’ve come a long way. For most of the 20th century, if they survived at all, disabled children faced a lifetime of segregation for their ‘own good’ in schools and institutions for the ‘crippled, blind and deaf’ (Historic England, 2020). In many countries children with physical health problems are still hidden away because they bring shame on the family. Not so long ago children were separated from their parents during hospital stays with visiting only allowed once a week (Robertson, 1970). I remember many children on my ward without their parents, just lying in their cots. I often think of one little girl in particular, whose parents went home to have another ‘healthy baby’ and never returned.
Thankfully, prospects have improved enormously. But we still have some way to go to address a lifetime of compromises, diminished opportunities and having to pretend to ‘be normal’ bound up in narratives to be brave, inspiring and grateful for a life gifted by medical science. Mainstream rhetoric during the ongoing Covid-19 pandemic such as “The virus only kills people with serious health conditions” and talk of “herd immunity” has laid bare ongoing ableism in society (Morton, 2020a, 2020b).
Despite studying psychology with the intention of becoming a practitioner Psychologist I completed a PhD in research following my undergraduate degree because it seemed like a more flexible option. While I enjoyed this experience I became aware of an expectation in academia to move wherever the ‘job took me’, which wasn’t an option. Instead I completed ‘Clinical Associate in Applied Psychology’ training, taking up a part-time post in the NHS. I then completed the BPS qualification in Counselling Psychology via the independent route, which enabled me to study flexibly. Once qualified, I set up in Private Practice to allow me to better manage my own schedule. I have also contributed to university teaching enabling me to pursue some of my research interests. While I have been fortunate to enjoy such an interesting career, every choice I have made has been dictated by the need to accommodate my health condition. I am hoping this could be different for others coming through.
I have found that working within an organisation depends on having a supportive line manager and team, else the subtle scaffolding that enables me to partake falls away. Further, most academic posts in Psychology are full time, while the stepping stones of this career, including frequent publication, impose additional obstacles. Likewise, NHS targets (e.g. to meet client numbers) can impose unrealistic expectations. While ‘reasonable adjustments’ to workload may be offered, in reality they depend on supportive management (which often shifts). As soon as someone takes issue with your workload, there is the need to again justify oneself. This can be the ‘final straw’ that tips the work-health balance. My solution has been to create my own ‘portfolio career’ (not entirely negative, it forces me to prioritise a healthy life-work balance).
Leading a culture shift
'What are we going to do? Every defective man, woman and child is a burden. Every defective is an extra body for the nation to feed and clothe, but produces little or nothing in return.' – Julian Huxley, Chairman of the Eugenics Society, 1930.
Our value in society remains lesser as long as work and educational practices are set up by and for the ‘healthy’ majority. Our opportunity to be contributing members of society robbed as we are made to feel a burden. How many of us are unable to pursue a career in psychology because the organisational culture is uncompromising? A wider neoliberal culture that prioritises the market economy over quality of life doesn’t help. When many of us feel overworked (during training and/or employment), speaking up about one’s own health needs can invite resentment and perceptions of asking for ‘special treatment’ especially when one ‘looks healthy’.
Disability discrimination is defined as being disadvantaged for a reason that relates to your disability and it may be direct (e.g. missing out on a promotion), indirect (e.g. a rule or policy which has a worse impact on someone with a protected characteristic), harassment (being treated in a way that violates your dignity) or victimisation (Equality Act, 2010). Often it is subtle, perhaps unintentional but damaging nonetheless. Studies suggest that workplace bullying is a risk factor for disability retirement (Birkeland-Nielsen, 2017).
Arguably as a profession Psychology is well placed to promote social justice by example, especially during a time of the Covid-19 Health Pandemic (Morton,2020a, 2020b), by promoting a more sophisticated and inclusive understanding of health and wellbeing. An understanding that gives weight to the many attributes gifted by adverse lived experiences such as post-traumatic growth, increased empathy, resilience, determination, more meaningful relationships, appreciation of life and insight into the challenges in life that bring our clients to us and are part of its rich tapestry (Hefferon, 2009; Sheikh, 2004). I believe my experience of personal therapy has made me a better therapist. I know what it feels like to sit in the client’s chair, how challenging the therapeutic process is and the importance of taking it at my client’s pace. My lived experience informs my advocacy work and my research interests compelling me to contribute to developing the evidence base towards meaningful change.
As such, the BPS ‘Declaration on equality, diversity and inclusion’ (2020) and ‘Presidential Taskforce on Diversity and Inclusion’ are welcome news. We need to promote and demonstrate a cultural shift that engenders real change. As a profession we need to become more ‘woke’ to the nuances of these challenges through proactive reflective and inclusive practice and being mindful of health privilege. There are a growing number of us living with complex health conditions, and we have much to contribute given the chance.
Reflective Practice – Questions to ask yourself
- Does your educational program / workplace proactively embrace inclusive practice, as possible?
- Are there opportunities for someone with a disability or long-term condition to work part-time / flexibly?
- Are you aware of your own health privilege and biases and how this may create blind spots to promoting inclusive practice?
- If you manage, work with, teach or supervise someone with health difficulties have you asked them (privately) how this impacts them and what can be done to better support them and enable them to continue to study/work?
Dr Liza Morton
Photo: "On the left, a photo by Peter Sandground from our Scarred FOR Life exhibition; on the right, a selfie I took in my hospital gown awaiting surgery a couple of years back, that Dr Nicola Cogan and I won the Strathclyde University Images of Research impact award for last year (for our work exploring the impact of hospital gowns on wellbeing). The image was displayed as part of an exhibition at the river clyde outside Glasgow’s Science centre. Across the water you could see Yorkhill Hospital, where I had all my childhood surgeries, so it was quite fitting."
Further reading and references
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