Dave Lupton aka Crippen – disabled cartoonist interviews artist, writer and academic Charlie Fitz in the second of a series of first-person accounts about the life-changing impact of connecting with the disability community and the social model of disability.
I have dyslexia and am also physically disabled from a genetic condition and multiple chronic illnesses. My work focuses on my experiences as a sick woman with a rare illness navigating medical institutions and as a disabled woman navigating society in an ongoing multiform project ‘Sick of Being Patient’.
I am interested in how cultural ideas impact the lived experiences of sick and/or disabled people and how to resist medical paternalism and reductive and harmful narratives of illness and disability in popular culture and beyond. I am beginning an MA in Medical Humanities at Birkbeck this academic year to explore this further.
I was diagnosed with severe dyslexia when I was 6. My mother and my school were phenomenal, they told me I was intelligent, there was nothing wrong with me, I was just “different”. But society and culture did not reflect this.
Although it was advised that I go to a specialist educational needs school, I did not. I was also never told I was disabled and did not associate with this term. I did not have a disability community or mentors or learn about disability culture, identity or history growing up. My dyslexia was framed as a personal “problem” that I would have to overcome.
In my early twenties I became severely chronically ill. Even after leaving my university course, job, home, city and moving back in with my parents to receive care I still did not associate with the term disabled. I also had a very limited understanding of disability. There were no representations of chronically ill and disabled people in popular culture that I could identify with. And even after spending years confined almost solely to a bed, my doctors did not use the term disabled or suggest that I access mobility aids or any of the support available to disabled people. Whilst isolated from society and popular culture, creative practise and art making from my sick bed became a lifeline.
When I began independently thinking about using mobility aids or accessing state support, there was a general feeling in society and an internal nagging that if I began using aids or services to support myself I was “giving up” on the “fight” to get better and that this should have been my only goal, to get better, because continuous sickness had no place in society.
This was an internalised ableism driven by capitalist ideology, in which our value as human beings is quantified by our ability to contribute to capitalist production, our ability to be working, contributing, labouring members of society.
When I could no longer fulfil this role in society, I felt infantilised, dehumanised and as though I was no longer living. A living death. I began creating artwork at this time to resist and challenge these narratives, although this work was only intended for myself. I made art to feel human whilst society dehumanised me, I made art to express my rage and desires as I felt voiceless and powerless, I often made works only to destroy them afterwards, as it was simply the act of creating something that I needed and I did not view myself as a legitimate artist.
I sought others in my situation on social media and learnt that many identified as disabled people and promoted the social model of disability. Engaging with chronic illness and disability communities online was a huge turning point for me. This was when I realised I was disabled and that I had always been. This was when I realised that sickness was not an interruption in life but simply part of life, particularly for someone with a long-term genetic condition.
Defining as a disabled person and learning about the social model of disability empowered me to find a community, to rejoin society and demand access. This is also when I was exposed to disability arts and culture and through the work of others began to view my work as legitimate and even important.
The medical model of disability, which is unfortunately how disability is most commonly portrayed in the media and in society generally, views a person as disabled by their impairment. This frames the impairment as the problem for the person and in turn the disabled person as a problem for society. In this model the responsibility to adapt is on the disabled individual rather than society. This model is well suited to capitalist societies which are built around wealth accumulation, labour exploitation and the cult of the individual. In which structural and historical inequalities and injustices are ignored in favor of the capitalist dictum; if you work hard enough you can achieve anything.
The social model on the other hand sees the person as disabled by society and specifically society’s lack of access rather than by their personal impairment.
The social model of disability opposes the medical model by reframing responsibility for change and adjustment onto society rather than the disabled individual. It sees the “problem” as society’s lack of access rather than the individual’s impairment.
Many chronically ill people rightfully identify the limits of the social model, as even with the greatest levels of access imaginable our illnesses may still restrict us. However, I view the social model for disability and the discrimination of disabled people as bound to and magnified by capitalist ideology. If our communities were built around care, mutual responsibility and interdependence rather than financial profit, yes we would still suffer from pain, fatigue and symptoms but we would not be alienated from society, we would not feel guilt or shame in our illnesses, we would not feel worthless.
The disabled community is hugely diverse and for many of us the only thing that we have in common is our exclusion or erasure from society. For many of us the only thing we have in common is the term disabled and the social model. For me, these terms brought with them a community built around care, respect and interdependence, a rich creative culture, a radical history of activism and access to disability arts.
I am proud to be a part of that community and I am proud to be disabled artist.
Sick of being Patient features visual and written creative solo and collaborative projects by Charlie Fitz. Many of the visual art projects are collaborative pieces with Oscar Vinter, including the powerful collaborative photo story ‘Assisted self-portraits’.