The Upside Down Kingdom of Heaven: Stories of Disabled and Neurodivergent Christians in Churches is a short nineteen page booklet outlining one aspect of Dr Naomi Lawson Jacobs’ PhD research. This short booklet covers one aspect of Naomi’s research, and perhaps one of the most important aspects, as the voices of disabled and neurodivergent Christians are brought to the forefront of this both her particular study and this booklet. Neurodivergent people have ‘a brain that functions in ways that diverge significantly from the dominant societal standards of “normal”’ (e.g. autism, dyslexia, ADHD) according to Nick Walker (2014). Naomi is an autistic, disabled freelance-researcher. It has been a delight to review this booklet, and its contents come in a timely manner for both disabled and neurodivergent Christians, and the Church.
The format of the booklet is straightforward and accessible; it is a prime example of well designed communication of research. It gives a bite-sized amount of information, without diluting the voices of the disabled and neurodivergent Christians, whose voices remain central to this work and the booklet. This can be seen with quotes from the disabled and neurodivergent Christians who took part on each page of the booklet, giving them an equal ‘voice’ to Naomi. Through producing this booklet, Naomi also interrupts the ‘gatekeeping’ of knowledge, which happens too often in academia, with paywalls and institutional access. The Church and the world of disability studies research remain disjointed in many places, with little communication between the two in terms of dissemination and practice (with the exception of disabled and neurodivergent clergy, advisors and churchgoers). This includes knowledge of disability studies as a whole, notably the social model of disability (Oliver, 1983), and the disability and neurodivergent rights movements. Furthermore, disabled and neurodivergent people are passive participants in research and the Church far more often than active agents. This booklet presents their voices as central to the narrative.
The two take away points from this booklet are the concept of the ‘ideal worshipper’, and the stories shared by the disabled and neurodivergent Christians who took part in Naomi’s research. The idea of the ‘ideal worshipper’ looks at how churches, and how we ‘do’ church, are often designed against certain ‘normative’ standards, both intentionally and unintentionally. This means those who are disabled and neurodivergent may not ‘fit’ this standard, thus impacting access, ability to participate and serve. Disabled and neurodivergent people in this case challenge the ‘ideal worshipper’, and provide resistance to these normative expectations. We need to be mindful of the concept of the ‘ideal worshipper’ when considering approaches to inclusion, and the impact this can have on disabled and neurodivergent Christians. The lack of dialogue with disabled and neurodivergent Christians (p9) is another aspect which is bound to shape not only how we ‘do’ church, but also approaches to inclusion in a church and faith context. This denies disabled and neurodivergent Christians agency in this context, exemplified by a ‘pastoral model of disability’ (Jacobs, 2018) or ‘charity model of disability’ (Tupling, Lucas & Braviner, 2018, p66), where disabled and neurodivergent people are seen as unable to have their own agency.
The stories shared remain perhaps the most important aspect of this research and the booklet. These stories give a ‘voice’ to the disabled and neurodivergent Christians who took part in Naomi’s research, who otherwise may remain unheard in their own church contexts. It also shares their lived experiences; disabled and neurodivergent people remain the experts on their own lives and experiences (including in a church context). This is fundamental to how we include people; how can we include people meaningfully without listening to those concerned and giving them agency? This is especially key given deficit narratives and myths prevalent in some church communities (see Memmott, 2020; Waldock, 2018 for examples surrounding autism and autistic people; Tupling et al, 2018, p38 in regards to disability more broadly). One important story shared in the research, which links to the concept of the ‘ideal worshipper’; a society organised by God’s values, not those of society. This is reflected in the title of the booklet; The Upside Down Kingdom of Heaven. Through only listening to society's values, we can fall into the trap of formulating a society not organised by God’s values and missing those who reflect the Kingdom of God in ways outside the normative scope of what we are told to value by society. This can be further applied outside of the framework of disability and neurodivergence.
Naomi’s booklet tells us clearly that doing church differently is good for all, not just disabled and neurodivergent people (p3) and the voices of disabled and neurodivergent people are key. I would highly recommend this booklet as part of a required dialogue with disabled and neurodivergent Christians, alongside raising the profile of other groups of disabled and neurodivergent Christians who are campaigning to be heard by wider church organisations.
You can access and download the booklet for free on this link: http://naomilawsonjacobs.com
Jacobs, N. L. C. (2018). The Upside-down Kingdom of God: A Disability Studies Perspective on Disabled People's Experiences in Churches and Theologies of Disability. Unpublished PhD Thesis. SOAS, University of London.
Jacobs, N. L. (2019). The Upside Down Kingdom of Heaven: Stories of Disabled and Neurodivergent Christians in Churches.
Memmott, A. (2020). Surviving the Church of England Announcements. Ann’s Autism Blog. Accessed 12th February 2020. Retrieved from: https://annsautism.blogspot.com/2020/01/surviving-church-of-england.html
Oliver, M. (1983). Social Work with Disabled People. Basingstoke, England: Macmillan.
Tupling, K., Lucas, D. & Braviner, B. (2018). Pilgrims in the Dark: Part 1 The Roads That Brought Us Here. Disability and Jesus.
Waldock, K. E. (2018). An exploratory study of attitudes towards autism in four Protestant churches in the South East of England. Unpublished MA dissertation. University of Kent.
Walker, N. (2014). Neurodiversity: Some Basic Terms & Definitions. Neurocosmopolitanism. Accessed 13th February 2020. Retrieved from: https://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definit...
Krysia Waldock is an autistic PhD student at the University of Kent researching autism and religious/humanist groups. She is also a neurodivergent Christian who has a keen interest in meaningful and non tokenistic inclusion, in both church and academic contexts. She is a member of the planning group for the annual Conference on Disability and Church run by IC in partnership with St Martin-in-the-Fields.