‘To belong, you need to be missed’: how the experience of being unseen acts as a barrier to belonging

‘To be included, you just need to be present. To belong, you need to be missed’ ^[1]

Belonging is a fundamental human need^[2]. Churches and other religious groups can nourish the need for belonging by providing community and a place where relationships can flourish^{[3] [4]}. However, some marginalised groups face what Krysia Waldock and Precious Sango^[5] describe as ‘barriers to belonging in church’[6].

Theologies can shape how we ‘do church’, and therefore what we may perceive as correct in church spaces. We will explore how people’s operant theology (what they do – their theology in practice) can differ significantly from the normative theology of their churches (the authoritative teachings, such as those found in the Bible and the creeds).

We combined the data from our individual research, where we explored the inclusion and belonging of two marginalised groups within churches, particularly individuals with ‘invisible’ illness and autistic people. Penny focused on the experiences of working-age adults (aged 18–65) in Church of England communities living with ‘invisible’ illnesses, such as ME/CFS or Long COVID, collected through a survey and interviews. Krysia did focus groups and interviews with autistic people and church and mosque attendees (with a focus on church experiences for this piece) to explore their experience of inclusion and belonging. We initially analysed our findings thematically. Through ongoing discussion, we recognised a significant overlap in how neurotypical and able-bodied ways of doing church exclude and result in what we describe as ‘unseen-ness’ in church congregations and other religious groups.

Being autistic, or living with an ‘invisible’ illness, is not necessarily ‘visible’ to other congregants. For some autistic people, their ‘autisticness’ may be very visible at some times, and invisible at different times; however, autism often has no physical ‘cue’ in the same way that some other disabilities may have. We put ‘invisible’ in quotes because there are subtle cues of unseen illnesses and neurodivergence that can be seen by those who take the time to notice.

One key aspect that resonated strongly throughout the stories people shared with us was how people are valued. Value often seemed to stem from performing tasks or fulfilling roles within the Church. Mia*, one of Penny’s participants, summed this up with ‘you only seem valued if you do stuff.’ Roger*, one of Krysia’s participants, served tea and coffee and worked the projector in his church. For him, being seen as part of, and fitting in with, the congregation meant having set roles to contribute to or undertake. Roger shared how ‘I would just do what I was there to do,’ as he did not feel overly comfortable in a church setting. Roles allowed Roger to be seen in a way that was ‘safe’ – ways that did not expose his difference, in this case being autistic. From Roger’s story and experiences, he would have struggled in roles that were very people-facing in nature, or involved working with large groups of people; therefore, he was limited in how he could ‘be’ in his church.

Our participants’ experiences differed. Penny’s participants living with invisible illnesses would like to be able to do things, but were unable to physically. Many (but not all) of Krysia’s autistic participants could physically do things, but were unable to embody these ‘normative ideals’ in church. In practice, both groups faced challenges embodying ‘doing’ in church. This could be problematic in churches that display a tacit prioritising of doing over being, and independence over interdependence. These ideas were particularly evident in Maria’s* experiences, one of Penny’s participants: ‘There is, in ministry, there is a huge emphasis on doing, on achieving, on productivity, on being energetic, being youthful.’

Further barriers to belonging through an emphasis on doing are echoed in Alex*’s reflection of ‘roles’ available for autistic people in churches, and how this may be similar for other marginalised groups who struggle to fit in within the ‘cult of normalcy’: ‘maybe those same roles don’t exist for queer or autistic people in church as at this point, but they understand what it’s like to go through some of that’. Alex* also spoke about the difficulty of ‘not feeling Christian enough’ when they didn’t have a doing role to do, or were unable to attend church: ‘I wasn’t a Christian again, but not that I wasn’t a Christian, but that I wasn’t as Christian as everyone else’

A theology of productivity and doing particularly shaped Penny’s participants’ ‘feeling enough’ in their Church. Mia* said: ‘Then once you sign up to one thing, they’re asking you to do the next thing, the next thing, the next thing. To be honest, that is fairly crazy for a well person.’ Another of Penny’s participants, Melanie* spoke about rotas in their Church of England church being quite rigid and enforcing a theology of productivity, rather than flexibility. With an unpredictable illness, she was unable to maintain her rota commitments: ‘I was due to preach, and 5:30 am that Sunday, I was in A&E with an infection. You can’t predict that!’ Yet Judith*, one of Krysia’s participants, warned against a theology of productivity and busyness shaping who should belong in churches: ‘I think we’ve a guard against feeling that everybody needs to feel that they belong because they’re doing things.’

Some of both Penny and Krysia’s participants spoke about how they rejected a theology of productivity and busyness, and ideas of normalcy, seeking instead value for who they are, instead of what they do. Joan*, one of Krysia’s participants, provided the strongest assertion of this: ‘Now I know who I am as an autistic person. Now I know who I am as a disabled person- an autistic person. I almost stand outside of that whole framework because I don’t need it.’

Valuing congregants based on ‘do[ing] stuff’ shows how churches often draw in wider social values and culture. Such cultural norms align with the Protestant work ethic and neoliberal ideals of productivity, producing what Karen Bray^[7] calls “compulsory ableism demanded by a neoliberal productivism.” Miroslav Volf^[8] warns that Christians often sanctify cultural evils “in God’s name,” and these studies found that ableism and neurotypicality have become normalised by churches in an unexamined way. Karen Bray shares how the pervasiveness of the Protestant work ethic ‘becomes increasingly and intimately engaged with definitions of personal worth’[9], hence ‘doing’ being valued over ‘being’. When people cannot ‘do’, they become ‘unseen’ by their church.

Edgar and Peter Schein^[10] describe culture as “the accumulated shared learning of a group,” shaping what is taken for granted as ‘normal’. In our studies, ‘normal’ could be argued to be able to meet the able-bodied and neuro-normative expectations of the church communities our participants belonged to. Thomas Reynolds^[11] expresses this as ‘the Cult of Normalcy,’ where differences or disability are seen as disruptions. 

Viewed through the four voices of theology framework^[12] [13], these stories and experiences reveal a disjunction between normative theology (the Church’s official teaching on grace, the imago Dei, and the metaphor of mutual belonging in the Body of Christ from 1 Cor 12) and operant theology (the lived beliefs expressed through everyday practice). While the Church proclaims that each person is valued as a child of God, its operant theology seems to equate worth with energy, reliability, and visible service. This is unsurprising given operant theology has been described as ‘normative’ previously^[14]. This hidden theology marginalises those with ‘invisible’ illnesses, or who are neurodivergent, whose capacities or social/communication styles fall outside the community’s unstated norms. Especially in cases where these norms value non-disabled bodies and neurotypical bodyminds, which in our case marginalise autistic people and people with ‘invisible’ illnesses such as ME and Long COVID, this creates a barrier to belonging and being ‘unseen’.

Congregations that expect busyness and sociability enact a theology of productivity rather than of grace. This should be a concern for congregants and church leaders, given the increasing recognition of neurodivergence and conditions like ME and Long COVID. In contrast, congregations and church leaders who consciously model different assumptions, those of valuing rest, presence, and relationships, can begin to reshape their churches’ culture in line with the Church’s normative commitments. Ian Parkinson^[15] suggests that this ‘stewardship of a holistic and helpful culture must be one of the primary concerns of any leader’ of a Christian community.

We do not suggest we have all of the answers. In fact, we position this as the beginning of reflection, thinking, and reconsideration. In many ways, the stories from our participants may resonate with readers, or start conversations on what churches should consider about barriers to belonging, and who gets heard in those conversations. We share some suggestions in Figure 1 that guide further reflection and reconsideration. Uncovering and naming these operant theologies is a step toward addressing these barriers to belonging. When the Church’s culture of ‘doing’ gives way to a theology of ‘being with’, echoing Samuel Wells^[16], ecclesial life can become more fully human and more fully reflective of the God whose power is revealed in weakness.

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Notes

^[1] John Swinton, “From inclusion to belonging: A practical theology of community, disability and humanness,” Journal of Religion, Disability & Health, vol. 16, no. 2 (2012): 172-190.

^[2] Roy F. Baumeister and Mark R. Leary, “The need to belong: Desire for interpersonal attachments as a fundamental human motivation”, Psychological Bulletin, vol. 117, no. 3 (1995): 497–529.

^[3] John Swinton, “From inclusion to belonging: A practical theology of community, disability and humanness,” Journal of Religion, Disability & Health, vol. 16, no. 2 (2012): 172-190.

^[4] Precious N. Sango, and Rachel Forrester-Jones. “Spiritual care for people with intellectual and developmental disability: An exploratory study.” Journal of Intellectual & Developmental Disability, vol. 44, no. 2 (2019): 150-160.

^[5] Krysia E. Waldock and Precious N. Sango, “Autism, faith and churches: The research landscape and where we go next.” Theology in Scotland, vol. 30, no. 1 (2023): 47-57.

[6] A barrier to belonging is something that prevents a complete sense of belonging, whether it is a physical barrier or object (or lack thereof), an attitude, or an interpersonal relationship.

^[7] Karen Bray, Grave Attending: A political theology for the unredeemed (Fordham University Press, 2019), 75.

^[8] Miroslav Volf, Exclusion and Embrace: A Theological Exploration of Identity, Otherness, and Reconciliation (Abingdon, 1996) 36-37.

[9] Karen Bray, Grave Attending: A political theology for the unredeemed (Fordham University Press, 2019), 86.

^[10] Edgar Schein and Peter Schein, Organizational Culture and Leadership 5th edn (Wiley, 2016), 6.

^[11] Thomas Reynolds, Vulnerable Communion: A Theology of Disability and Hospitality (Brazos Press, 2008), Chapters 2 & 3.

^[12] Helen Cameron, Deborah Bhatti, Catherine Duce, James Sweeney, and Clare Watkins, Talking

About God in Practice: Theological Action Research and Practical Theology. (SCM Press, 2010).

[13] This is a framework that can help us understand different theological voices and standpoints within both churches and the academy.

^[14] Andrew Dunlop, “Using the ‘four voices of theology’in group theological reflection,” Practical Theology, vol. 14, no. 4 (2021): 294-308..

^[15] Ian Parkinson, Understanding Christian Leadership (SCM Press, 2020), 149.

^[16] Samuel Wells, A Nazareth Manifesto: Being with God (Chichester: Wiley, 2015), 30.

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© Krysia Waldock, Penny Pullan, 2026. This work is licensed under Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0).

Cover Image: image provided by the author.