Making Room for Spiritual Abilities: Towards Inclusive Worship Practices

Tanya Riches & Vivienne Riches

Abstract

Pentecostals place great emphasis upon active participation in the worship service. But for many people with disability, attending a contemporary Australian pentecostal church may be best described as an experience of exclusion, backed up by a noted absence of people with disabilities within pentecostal denominations. This paper draws upon research conducted by The Centre for Disability Studies to assess community participants’ religious support-needs, using the I-CANv4 assessment tool. It shows that support for active spirituality is provided by a matrix of people and organizations. At present, many of the people with disability who require medium to high support receive this assistance from organisations funded by the Australian government. Yet, as this study shows, provider institutions and their staff often exclude the spiritual needs of people with disability. This exacerbates felt exclusion of people with disability, but also real exclusion – those who are prevented from attending rarely feature within church-based surveys. An assessment tool such as the I-CAN that uses a supports-need framework can concretely assess needs, including supporting spirituality. Assisted by recognition of support-needs, this article discusses intentional inclusion in church worship.

Introduction

Spirituality is very close to the centre of our human identity and notions of the self[1]. Many individuals, among them people with disabilities, attempt to answer questions of ultimate importance through participation in community or social groups that assist spiritual inquiries and/or facilitate religious commitments. All Christian churches, including pentecostal ones, provide this opportunity. Globally, pentecostal congregations are noted as intentionally expanding their notion of sacred space (often from a central location) into the “secular” sphere. As such they tend to see the church as sole provider of spiritual support to the community[2]. The data, however, show that, in the case of people with disability, spiritual support is in fact provided by a matrix of people and organizations. This article addresses recent concerns about exclusion of and the lack of support for people with a disability, situating this within a broader discussion on pentecostal worship and theology, intentionally prioritizing data that reflect the experiences of people with disability. First, we outline intersections between the field of disability studies and Christian worship. Then, we address relevant tensions that arose within the “worship wars” including common misconceptions about pentecostal practice. Then we provide possible solutions by drawing upon emerging theologies and the lived experience of people with disability. Next, we address the method, and discuss findings from our research, along with recommendations for future practice.

Disability – a changing landscape

In the case of many Australians with a disability, their regular everyday care and support for needs are met through a government funded service provider, or more recently via individualised funding package arrangements. Historically, philosophies and policies assumed the state as the most efficient provider of care, and therefore institutions determined the lives of many with disability, delivering this care for people with medium to profound disabilities. However, with support from families and advocacy groups, Australians successfully championed ‘transition’ or wide-scale relocation back into society. Now, local providers service family and group homes. And, Australians with a disability are re-engaging the community; accessing sports clubs, hairdressers, restaurants and travelling to holiday destinations. This larger context provides increasing possibility for people with disability to explore spirituality within a local congregation.

However, when it comes to the Australian pentecostal church, serious questions have been raised about the quality of spiritual or pastoral care available for those with disabilities[3]. Australia’s “happy clappy” worship services are noted to exclude lament[4], and facilitate the pentecostal liking for itinerant faith healers who order those with a physical disability to rise from their wheelchairs. In response, pentecostal theologian Shane Clifton has promoted well-being as a framing concept towards which he believes the church’s interaction with people with disability should move[5]. His comments arose in critique of this healing evangelism - so prevalent in the pentecostal community that it is now self-definitional, similar to Spirit baptism.[6] Rather than these healing theologies, Clifton argues that churches should be interested in a broader concept of wellness or wellbeing that makes room for those with disability. Such a construct, he argues, draws upon virtue traditions, and is in this sense closer to the desire of Jesus to provide wholeness, or shalom, meaning fullness of life. However, while questions of quality of spiritual care have been reviewed, questions of accessibility have been largely left unexplored. And, this silence is echoed by the Australian academy on the whole, which has not pursued questions regarding how people with disability may exercise their spirituality within the community. This article attempts to draw these discourses together. The real or lived spirituality of people with disability should be important to Australian pentecostals, who emphasise involvement in worship, but also, increasingly, social justice.

The Australian Bureau of Statistics notes 4.2 million Australians (18.5%) indicated they have a disability[7]. This of course covers a broad spectrum of diagnoses, severity, and range of impairment; from physical disabilities through to intellectual and psychological ones, autism and acquired brain injuries. Often diagnosis includes multiple disabilities. Generally in Australia (with a few exceptions), churches only attempt to support their local community members who turn up to the worship service, and few churches locate people with disability in their community with the goal of supporting their spiritual needs. Therefore, it falls to a politically secular state to both recognize and to deliver spiritual products (services and content) to many Australians with a disability. However, the state has no official interest in active spirituality. This is somewhat mitigated by the sensitivities of government employees, researchers, individual staff and managers who recognize such needs, and seek to deliver care. This results in a widely variable picture of service provision.

Australia’s funding structure affects the delivery of support-needs to people with disability, as federal revenue is collected and passed onto the states, who in turn engage local or regional providers to supply block services to those living in family or group homes. Under the incoming National Disability Insurance Scheme (NDIS), as a product of the 2011 Australian Productivity Commission inquiry into disability care and support in Australia[8] self funded packages will increasingly enable individuals with disabilities to purchase funded supports. However, under both arrangements gaps still occur. This is particularly relevant to the continuation of support for spiritual activities.

Inclusion, Spirituality and Disability

Although health researchers have begun to identify the benefits of active spirituality for those with disability[9], and theologians are beginning to reflect upon this research[10], this intersection hardly appears on the radar of more practice-orientated pentecostal pastors. However, a common value of ‘participation’ provides a basis for this interdisciplinary discussion. Within disability studies, community participation is recognized as central to a person’s health and wellbeing. The World Health Organization’s International Classification of Functioning, Disability and Health (ICF)[11]bio-psycho-social model now conceptualises disability as a dynamic state that typically incurs restricted function, due to interaction between the person (their health condition including impairment); the activities they desire to do (and any difficulties that may occur in carrying these activities out); and environmental and personal factors (as in, restrictions on participation in the community such as physical access, discriminatory attitudes, or an individual’s past experience). Hence, a person’s everyday life functioning is the result of a complex relationship between these three components. Consequently, the provision of relevant and effective support can improve an individual with disability’s everyday functioning, and further empower them to live the life they choose to live[12]. This view clearly and importantly provides room to include spirituality, and participation in the practice of Christian worship.

Participation in Christian worship is increasingly significant within the field of liturgy or worship (a sub-discipline of practical theology). With breakthroughs in regards to the ‘neuro-plasticity’ of the brain, and recognition of the significance of its embodiment, scholars are beginning to record how practice shapes us as individuals but also as a society. Involvement in the congregational worship service has always been considered crucial to Christian spiritual formation (Hebrews 10:25)[13]. It is important to note that the benefits of participation in liturgy are not only the communication and reception of Christian doctrine, which may exclude some people with cognitive impairment. The affective elements transmitted within the worship are often emphasized within the oral pentecostal tradition. And, recently, pentecostal scholar J.K.A. Smith has brought these non-cognitive features into focus[14] in a “liturgical anthropological” attempt to define worship as “communal, embodied rhythms, rituals, and routines”.[15] He notes that liturgy (or worship) is experienced as an embodied person. And therefore,

This isn’t a matter of simply learning new ideas and content; it is a matter of tuning. We are attuned to the world by practices that carry an embodied significance. We are conscripted into a Story through those practices that enact and perform and embody a Story about the good life[16]

Smith reiterates that the end goal or telos of the practices we participate in become embedded in our bodies and hearts. Thus, any community orients around its common end or vision that permeates both body and mind. This vision of ‘the good life’ is implicit within, and imparted in ritual.[17] Relating this back to disability, this is poignant when discussing the spiritual formation of bodies and minds that are considered “broken”. It heightens the understood significance of marginalization or exclusion from church as a site in which Christian ritual occurs, raising questions of how tuning may occur for those who are unable to be present in the worship space. Still, emphasis upon a holistic notion of human flourishing seems to be increasing, not lessening. And, the significance placed upon bodily togetherness heightens the urgency of this discussion. It must be noted that here J.K.A. Smith provides an ideal model of liturgical engagement, rather than one rooted in lived experiences of people with disability. Additionally, it is important to note that many scholars disagree that contemporary worship, as opposed to more liturgical forms, could ever deliver this type of outcome.

One scholar particularly critical of the possibilities for spiritual formation through contemporary worship is Lutheran theologian Marva Dawn, who herself has experience of disability and illness (including blindness, lameness and breast cancer). She influentially contrasts the value of ‘participation’ as found in traditional liturgical worship against the ‘entertainment’ values of contemporary culture as reflected in contemporary worship services. Within her book Reaching out without Dumbing Down: A Theology of Worship for the Turn of the Century Culture[18] Dawn highlights the object of worship as God - opposed to the human self, which is often promoted or elevated in our society. She argues that in contemporary worship, the congregation can become a passive “audience”. Rather than attributing worthiness to God, instead she claims that a member’s awareness may become focused upon his or her own positive experience.[19] She contrasts this against traditional liturgical action, which is undertaken as ‘the work of the people’.[20] As such, this echoes communication scholar Marshall McLuhan’s most famous adage, “the medium is the message”.[21] Dawn’s writing played a significant role in charting the disputes of the so-called “worship wars”, fuelling the critique of contemporary worship as inferior to more traditional forms that draw upon a liturgical calendar and therefore the “whole” gospel story (including significant passages relating to disability). According to Dawn, contemporary worship is exclusionary by virtue of its very style, and this is outworked even in the worship site. She asks,

What provisions do we make in our sanctuaries so that the hearing or visually impaired are not excluded from the community? Are we preventing children from growing up in the language of worship by banishing their cries, relegating their songs to special programs, not involving them in the practices of worship? Do we provide transportation, hospitality, entrance ramps, and alternative seating so that no one is denied access to the community’s gatherings?[22]

In this case, intermixing questions regarding people with disability and children is not intended to suggest that people with hearing or visual impairment are immature or partially-formed people, but to illustrate that every community has people with disability, just as every community has children,[23] And, similar to children, people with disability are often excluded (or visually absent) from the modern worship space. However, one clear difference is that while most churches intentionally cater for children, the support for people with disability varies widely amongst congregations even within the same denomination. Dawn continues to argue influentially that contemporary worship cannot cater for the needs of a whole community.

Worship Participation and People with a Disability

Marva Dawn’s claim that the contemporary (i.e. much of the pentecostal church) worship is flawed for the task of spiritual formation must be engaged, if the church is to move towards human well-being, as Shane Clifton suggests we must. This question of whether a contemporary worship service necessarily excludes people with a disability continues as a feature of liturgical discourse. Sadly, Dawn’s critique provoked little if any change towards inclusion in contemporary worship practices. This may not be due to a lack of truth in her observations, but because worship pastors (with a few exceptions) largely eschew scholarly education in favour of market-distributed resources such as magazines, CDs and videos. Practitioners tend to reject scholarly debates as disconnected from the actual realities of church life. However, it is important to note that despite conflict over style, few contemporary worship scholars disagree with Dawn’s central argument, that ‘participation’ is the central value of the worshipping community. In fact, they argue that contemporary worship is more participatory than traditional liturgical worship. For example, ethnomusicologist Monique Ingalls expands upon the incredible global popularity of contemporary worship music due to its potential to facilitate mass participation. She notes how multimedia and local arts broaden a worship service beyond didactic teaching methods. She attributes the rise of global evangelicalism to shared discursive music practices that travelled via worship tapes and CDs[24]. She charts how the contemporary chorus song rose in popularity within informal sharing of music between groups at Christian camps, which led to interstate Christian conferences and gatherings, eventually forming a translocal evangelical identity. This Christian movement found agreement within shared values – i.e. while Christians differed on theological bases, they could still raise their hands together to sing the song ‘How Great is Our God’ by Chris Tomlin. She therefore notes the significance of music in unifying and shaping religious belief.[25]

Disagreeing with Dawn’s pronunciation of a contemporary chorus as theologically simplistic and “self-centred”[26], Ingalls notes the central feature of a chorus as its accessibility. First, the greatest adaptive feature of the charismatic chorus is its instrumentation – such songs are largely composed on guitar rather than piano, enhancing their mobility. Second, the use of vernacular language allows for greater participation, particularly including the less educated. Grassroots Christian songwriters are representative of their constituencies and function as the voices of everyday people, versus professional liturgists and theologians.[27] Third, the use of simple, chord-based music has lowered the level of musicality. Thus, entry into a local church band now requires very little musical education, and is open to all who play a basic four-chord riff, and the congregation need little musical training to participate. Here the contemporary chorus arguably acts to democratize worship processes. These features contrast more traditional churches, and hymnal committees that draw upon expert panels of theologians and liturgists to construct a musical repertoire of Western composers noted for their high musicological skill. That Sydney’s Hillsong Church has become one of the largest global disseminators of Christian musical resource while boasting few professional theologians or musicians is testimony to the value of (and openness to) participation in contemporary worship. And, just as pentecostalism easily integrated new, locally produced sounds into worship, its capacity for grass-roots community involvement appears in other parts of the service through film, and the visual arts.[28] But the question remains, is participation the common experience of Australian people with disability within these churches?

In regards to engaging people with disability within the community, there are a number of positive features listed above. Cultural production may enhance participation in a contemporary service. And, Australian pentecostal churches often boast newer buildings designed to building regulations, with wheelchair accessible ramps and elevators. Although theoretically all churches should comply with national legislation, it is difficult to compare an adapted traditional stone church to a purpose-built community centre. Additionally, pentecostal churches tend to build large volunteer teams and relevant resources for collaboration with local or community programs. And finally, despite accusations from the media[29], another noted characteristic is pentecostal ingenuity in situations of limited finances, stretching the available resources to meet local needs.[30] It is expected that these features could extend into support provision for people with a disability in Australia. Pentecostal churches also promote an emergent leadership strategy that is pragmatic and innovative, and that adapts quickly to change. This is true globally, but particularly observable amongst marginalized people groups. There is great potential for people with disability to form a vibrant and visible part of pentecostal congregations.

Connecting Pentecostal Theologies and Experiences with Disability

While the pentecostal church has great potential to community-build and promote the participation of people with disability; this is not the lived experience of many attending pentecostal churches. Shane Clifton emphasizes that the theologies within the worship services exclude many of his own experiences as a quadriplegic[31]. Yet poignantly he notes that all humanity is embodied, and thus, our theologies will have to account for our eventual deterioration, despite the wonders of modern medicine. From his personal correspondence with The National Life Survey research group, Clifton theorizes that healing theologies and meetings in fact negatively affect attendance, as people with a disability depart the pentecostal worship space in reaction to the failings of the church. Contrasting this picture of the church driving away those with disability is the account in Luke 14, in which Jesus invited those with disability to be his special guests. There is no doubt that healing events offer spectacle and raise shorter-term congregational attendance. But whether itinerant healing ministries may decrease longer-term attendance is an exceptionally contentious issue in Australia, where desire for the Spirit’s miraculous work is resurging amongst pastoral leadership. There are, however, other contributing factors to note including the discouragement of Australian pentecostals more broadly over pastoral staff’s lack of recognition of the increasing education of the Australian people, and therefore propensity to use church events to stage a rejection of science and the academy.

Nevertheless, pentecostalism is often lauded due to its theologies of Spirit presence and therefore active involvement of its members through the ‘priesthood of all believers’[32]. The biblical Pentecost event is noted as bringing salvation to the nations of the world, and therefore diversity is a key feature of this worship expression. Yet, preeminent pentecostal theologian Amos Yong agrees that pentecostal theologies have not yet matured to include people with a disability. While his work on Down Syndrome is more scientific and theoretical, his book The Bible, Disability, and the Church: A New Vision of the People of God directly addresses ecclesial barriers to inclusive worship.[33] He agrees these can be structural, such as ramps and lifts, but also perceptions the church holds regarding “normative” states, and most pertinently, the belief that faith can access healing[34]. Importantly, he defines disability as “not only an individualized, biological/medical experience, but also a social phenomenon of oppression, marginalization, and exclusion”.[35] His work reimagines disability entirely -- as a witness of God’s power in the biblical text, found in the penultimate symbol of Jesus’ broken body on the cross. Scars were clearly evident upon Jesus’ resurrection body. Jacob’s limp served as evidence of his blessing. And, Paul’s “thorn” was not removed, despite his prayers. Therefore, the biblical vision of “the good life” is a community enriched by the very brokenness evident within it. In addition, Yong’s reading of Acts 2 legitimates glossolalia as non-verbal communication – central to the work of the Spirit.[36] He argues that, as the Spirit distributes gifts to the body, in fact the participation of members is a necessity.[37] In particular he points to the importance of pentecostal affective sensibilities that help us engage the spiritual world. He states, “it is plausible to view the entire somatic system as affectively engaged in a process of discernment”.[38] For the pentecostal, God is revealed through all our bodily senses, including intuition and affect. He suggests that, rather than a wholesale dismissal of those who are unable to experience the fullness of koinonia or fellowship, that we assess each case individually, taking stock of each of our spiritual gifts and our support needs.[39] This directs our attention not only to participation, but also beyond this to the contribution of people with disability within the ecclesial environment. Similarly, it admits the spiritual support needs of able-bodied members – and thus has the potential to promote relationships as interdependent.

Sadly, current literature only acknowledges the spiritual needs of people with disability who are visible (or visibly absent) within the worship space. This suggests that the church must move towards recognizing the spiritual needs and contributions of people. This article, however, emerged from data that highlights gaps and challenges for pastors and church leaders. In fact, the disability community in any local area is far broader than just those who present themselves on a Sunday morning to the worship service (or those who drop out due to various reasons). Despite anti-discrimination legislation and philosophies that espouse a truly inclusive society, many Australian adults with disability face ongoing barriers to participation in all aspects of community living. This includes the area of spirituality. Many people with disability reside in supported accommodation configurations such as group homes that can foster segregation and isolation, and are therefore excluded from the worship space altogether. Before a person with disability ever turns up (or becomes visible) to a church, there are a variety of support needs provided by someone in the community. Consequently, it is important not only to document this support, but also to bring awareness to the spiritual alienation often felt by those in a group home setting.

This article follows a"praxis orientation" as outlined by Isaac Prilleltensky[40] and is thus written with the intention of initiating change, or transforming lived oppression. Such work draws upon the voices of the suffering, and the tools of social science. It is perhaps new for the Australian pentecostal guild to bring research data in from the outside world, and apply these to the church. However, it is our hope that this article may model a way pentecostal scholars can enrich rather than impoverish their churches through scholarship in what are often deemed ‘secular’ fields.

Method

Daniel Albrecht states that the location of the researcher is significant in pentecostal research[41]. Two self-identifying pentecostal researchers author this article, with data coding assistance from an additional researcher. The first is a worship leader and songwriter whose foundation in pentecostal theology led into ritual research that is best described as located within the emerging anthropology of Christianity field, which is deeply committed to ethnographic research. The second author is a senior researcher and psychologist working in the field of disability studies. The third researcher, an analytic psychologist, coded and analysed the data for this article. Spirituality was an area of prior interest to the principal author in her role as research assistant - in which she conducted interviews under supervision by CDS. Concurrently, she was also prepping her first solo worship album. Themes from these interviews on spirituality and faith outlined by respondents have been extrapolated to form the basis of this discussion.

The authors collected specific data for this research between May and September 2011 in a project conducted by the Centre for Disability Studies (CDS). The I-CANv4 support-needs assessment tool[42] was used to gather assessment of disability funding needs. Interviewees were voluntary participants, and each interview on average took one hour. Interviews typically involved the person with a disability, but sometimes a proxy, usually their primary carer (parent or key staff worker) and any significant others, using a process facilitated by a trained interviewer. Most were conducted in the person’s residence, several were by phone, and a few were undertaken at a local cafe, or at the person’s workplace during lunch. The tool gathered quantitative and qualitative information on all areas of participants’ lives but only data relating to spirituality were accessed for this article. There were 246 responses recorded from community members regarding spiritual supports, which represents about 28% of the 872 total participants assessed using the I-CANv4 assessment tool.

Supports were rated according to the definitions and categorizations specified within the I-CANv4 support-needs framework. If support is required for an item, in this case active spirituality, then a description of all the supports the person requires are described under the various categories, including ‘I Can... Goals... My Support Needs’ and ‘Follow-up?’ Once a good description has been written to identify specific support needs, then quantitative ratings are assigned using a 0–5 rating score. This rates the ‘Frequency of Support’ as measured from lowest (0 = never) through to highest (5 = constant support throughout the day) and the intensity or the ‘Level of support’ measured from lowest (0 = no help required) through to highest (5 = total physical assistance from two people).

Results and Discussion

Of the 246 respondents, 14 (5.7%) replied that they had ‘no religious affiliation’. The majority of others (92.5%) identified themselves as ‘Christian’, and some specified their denominational affiliation. Numbers were small for most religions and denominations and only two (0.8%) indicated they were Pentecostal (one of whom identified as Assemblies of God, and the other, Hillsong Church). The size (72%) of the ‘unknown’ Christian denomination category is surprising as it reflects the incapacity of the researcher to answer the question adequately with the information given by the respondent/s.[43]

Table 1: Religious Affiliation

Religious affiliation	Number	Percent
Christian (Unknown)	177	72.0
Christian (Catholic)	32	13.0
Christian (Anglican)	7	2.8
Christian (Salvation Army)	3	1.2
Christian (Uniting)	2	0.8
Christian (Baptist)	2	0.8
Christian (Seventh Day Adventist)	2	0.8
Christian (Hillsong)	1	0.4
Christian (Assemb. of God)	1	0.4
Christian (Greek Orthodox)	1	0.4
Muslim	1	0.4
Jewish	1	0.4
Indigenous	1	0.4
Wicca	1	0.4
None	14	5.7
Total	246	100.0

Participation rates revealed the majority of the respondents were considered actively (86.9%) engaged in spirituality. However, very few indicated regular church attendance.

Table 2: Participation rates

	Number	Percent
Active	214	86.9
Monthly	4	1.6
Biweekly	1	0.4
Nominal	12	4.9
Unknown	20	8.1

Grappling with the Support Needs of the Community

Assessments revealed 28.5% of respondents were independent, and needed little to no help or support to attend or participate. However, the average for intensity of support (M=1.6) was located between “managed independence” (e.g. managed with equipment such as hearing aids, wheel chairs etc.) and minor assistance (e.g. prompts from a single support worker – such as reminding the person to be ready to leave on time for the service). Where moderate or extensive support is required, one support person would be required to be physically present, and two people where support needs are listed as pervasive.

Table 3: Intensity of Support Needed

Intensity of Support	Number	Percent	Mean =1.60 SD = 1.38
0- Independent	70	28.5
1- Managed Independent	33	13.4
2 - Minor (Prompting)	70	28.5
3 - Moderate (Series Prompts)	40	16.3
4 - Extensive (1:1 support)	31	12.6
5 - Pervasive (2:1 support)	1	0.4
Total	245	99.6

A number of participants indicated the specific type of supports required, and these are reported in Table 4. Seven respondents (2.8%) needed help to find a potential church they could attend regularly, including staff or family members providing encouragement, assisting with computer searches of church websites and/or being willing to ‘trial’ local churches with them. Nearly a quarter of respondents needed support for mobility and/or transport. This suggests that for many people with a disability, exclusion from the service begins well before the first praise song. Support in the form of social/accompaniment (21%) and behavioural supervision (13%) combined to form the greatest need (34%), indicating that for many people with a disability, their participation in any church service is highly dependent upon support from other people. In addition, for many respondents living in group homes, support-needs continued beyond the service, as they indicated they required reassurance regarding beliefs, encouragement, prayer and support for bible reading within their own homes.

Table 4. Identified Support Needs

Support Needs	Number	Percent
Mobility/Transport	59	24.0
Social/Accompaniment	52	21.1
Behavioural Supervision	32	13.0
Belief/Pastoral Reassurance	11	4.4
Locating a Church	7	2.8
Unknown	3	1.2
Encouragement	2	0.8
Prayer	2	0.8
Budgeting	1	0.4
Support for Bible reading	1	0.4

Narrative Data as Lived Experience

The qualitative data collected echo a strong need for social accompaniment. In many group homes, funding for support workers is lessened on the weekend and/or relief staff is provided. Often, weekend staff is largely unaware of weekly scheduling, and/or prior requests for support. This means there is less likelihood for an individual to be accompanied to church by a staff member, also reflected in the qualitative data:

“[Pat] was involved in church activities when he was at the Group Home; this was due to a staff member organising this activity for him and he was happy to participate. [Pat] enjoys the company of people and the food that was provided to him after the event.”

Here it is important to note this as a staff worker’s assessment, both of the respondent’s toleration of the service and enjoyment of the food provided after the event. Support workers, who typically underestimate the importance of spiritual participation for the respondent, commonly espouse such views. It is often unclear whether this is objectively true. It was clear for many respondents that church attendance provided a significant point of connection with a particular person, or opportunity for relationship building.

“[Sandy] used to go to Church with her mum when she was alive”

“[Jessica] used to go to church when she was young with her aunty”

“[Phil] used to attend church but has recently stopped going”

In the above cases, support workers rarely offered reasons as to why this commitment had ceased. Where the researcher questioned this, the support worker often referred to the stress of working in a rationalizing disability services industry. In a number of instances, support was clearly discontinued after the death of a significant support provider – often a key family member. This suggests that there may be multiple layers of loss and grief for people with a disability who lose a significant other, plus connection to their faith community. In most cases, these support needs were left unmet.

When assessing needs on the ground, the reality is that definitions of spirituality or active religious participation are largely unexplored within the disability field – leaving wide variance between researchers (who often fail to collect, or even omit these data). Similarly, expectations of managers, staff and support workers often differ from those espoused by the respondents. Staff workers may differ in religious commitment from the people they support and therefore may lack an appreciative understanding of the person’s religious belief or practices. Or, they may have no religious affiliation at all, and not know how to identify needs, or how to support the person. Thus, where the support-needs assessment was completed by a proxy, or with assistance, data may well have been biased or inaccurate, as no information was received on the affiliation of support-workers. In several known cases this is suspected to have affected the recorded answer. Indeed, in several cases, transference was observed during the support-needs assessment. Often, staff workers wearing a crucifix would deem their clients as Catholic, but in one particular case, where a staff member was answering by proxy for a totally non-verbal group home member, he looked at this house member, smiled and firmly declared,

“He’s an atheist!”

While the relationship between staff workers (or proxy) and the person may be charged with religiosity, sometimes a staff member is unaware of it. Support workers in general over-represent migrant populations, but particularly Filipina/Filipinos and Indians. These populations may identify as staunchly Catholic or Hindu, and fail to recognize other religious affiliations. The excerpt below is a tragic engagement relayed between a support worker and a pentecostal participant discussing the death of her evidently unsaved sister.

“[Jane] has a firm belief in God and Angels. [Jane] attends the AOG church whenever her friend [Sally] is in town. [Jane] regularly tells staff her mum is in Heaven but that [Kylie] (her deceased sister) is in a box. Apparently they do not automatically go together”

As illustrated in this under-assessment of Jane’s ability to comprehend religious content by the support worker, there are clear ethical issues in staff helping select participants’ religious affiliation, and supporting them in meaningful ways. Significantly, families often support religious activity as a part of their collective identity, with ethnicity and religiosity entwined for many cultures (e.g. for many Aboriginal and Torres Strait Islander, Greek-Australian and Italian-Australian families). Some participants explained that their family of origin supplied the support for spiritual activity, even though they were living in a group home.

“I have always gone to church each weekend. I need support to get to church on the weekends … my parents aren't available to take me”

“[Dirk] is proud of being part of the Salvation Army, he used to attend regularly”

“[Jemima] used to attend church and would like to go again. She enjoys the singing”

And yet, participation in religious activities may also divide a family who refuse to provide support for participation in the practices of other faiths. Such dynamics compound the issues of providing spiritual support.

In many cases staff understood the medical or physical needs of person they support as primary, but were even surprised spirituality was included in the assessment tool. That their attitude affected participants was reflected in the category ‘encouragement’, directly identified by two participants. Some support workers did see spiritual needs as significant, and noted that they integrated support for this area of life into their job. They expressed that they felt frustrated when they were unable to ascertain whether the person with a disability was interested in church, and if so, which church they would like to attend, and how often. Having this information provided for them through the use of some sort of assessment such as the I-CAN assessment would assist staff to work out what they could do to meet the respondent’s spiritual goal/s, and negotiating this goal as a priority compared to other goals such as completing daily house tasks.

As noted, the support needed is not only just for attendance at church services, but also flows into ordinary, daily spiritual practices within group homes.

“In the past, [Emily] attended church every Sunday with one on one support from an Agency staff. This unfortunately had to be stopped. In the past, [Emily] would ask the staff religion related questions for reassurance”.

Staff workers rarely if ever facilitated bible reading, or even cultural/ethnic religious practices such as kosher cooking or religious events such as Ramadan. Religious commitment is made up of both public and private rituals - however staff on the whole indicated a lack of understanding and appreciation of the possible value of these rituals to the participants as people. Religious practices including meditation, bible reading, grace before a meal and prayer were seen as incidental to daily life.

Dylan attends a weekly church service at X Disability Service; he also enjoys spending time reading his bible in his bedroom (often to the exclusion of other activities).

Some of these support needs could be met in the house through simple things such as a chair for prayer or space/time to listen to worship music.

Most confusion arose when behavioural (obsessive or disruptive) issues prevented attendance at church. Qualitative comments reflect that a person with disability, including those on the Autism Spectrum Disorder may be emotionally distracted by certain interactions, such as limited options in which to sit, and physically distracted by high volumes of sound, such as from noisy children. In some cases the respondent felt they were (or were told they were) a distraction to the congregation, and so discontinued participation. For the same reasons, in other cases whole families become excluded when a family member has a disability. All in all, this demonstrates that religious commitment is often spatially dependent for people with a disability and their carers who are best served by proximity, and particular aesthetic environments.

Participation/ Contribution

Interestingly, qualitative data relevant to participation were recorded only within pentecostal and Catholic settings (which may or may not be charismatic). Framing involvement as participation was seen in the following instances.

[James] is a 'churchy boy', he likes Hillsong church and volunteers there.

“I can attend mass each week and participate in the order off the mass, by shaking hands with other people around me and going for communion given by the Father. My support needs are to be able to attend mass weekly and to be supported to do this”

“I am part of my local parish I attend mass most Saturdays. I walk next door to the church and I like to get a couple of coins from my money box to donate mass”

I go to Church at St Patricks at the Bay with Father [Frank]. Staff help me to tell the Emmaus Story. Staff take me to Church in the car.

Participation in worship was significant for these people with a disability. However, there was no mention of communion or baptism, two rituals particular to Christian worship.

Incorporating Experiences of Exclusion into Worship Leadership

These data reveal a clear need for liaison between churches and agencies regarding the provision of support to people with disability. This is a potential avenue for discussion between denominations, their community organisations and the state, and may even result in mutually beneficial arrangements. Not only this, but serious reflection is needed at a congregational level on how the assessment of spiritual supports may be conducted more broadly, in order to better facilitate the contribution of people with a disability to the church. There are two sides to this picture – the first is increasing physical access for people with a disability so that community members may attend church worship services, and midweek events. This includes anticipating or responding to common (and individual or particular) support needs. The value of inclusivity can be communicated through assistance for wheelchair access, allocated seating and staff collaboration to solve the various volume issues and visual distractions that occur in a contemporary setting. Given that so many Australians may be categorized in this group, it is profitable for churches to recognize that there are potentially whole groups of highly independent people within their own suburb, many of who have time to volunteer in the ministries of the church, and would benefit from doing so.

But, for many pentecostal pastors, inclusivity may begin with acknowledging the support needs of all those who are in their congregation, and better recognition of our own humanity, or personhood. Thus, the second move towards inclusivity in the pentecostal church is for those who appear able-bodied to recognize and to negotiate their spiritual support needs and abilities, and appreciate and seek ways to include the presence and gifts of those with disability. Such discussions may be implemented formally as a part of staff team-building exercises or within connect group discussions. But, in order to effect change, such messages must also be legitimized, and therefore communicated from the platform. For the principal author, the qualitative data collected in the interviews inspired her to rethink common narratives within contemporary choruses. She sought to collaborate with songwriters in the Sydney area with the intention of creating songs that promoted inclusion. The song ‘Grace’ became the title track of her album. It was penned in collaboration with an Anglican worship leader, Adam Jones. The initial verses were inspired by Matthew 11 (in the easy English paraphrase version The Message), with the intention of emphasizing salvation as the wholeness or shalom offered by God.[44] In hopes of leading the congregation into greater unity, a confession of common pain and brokenness was used to construct the first verse:

Here in my weakness

Here in my failings

Here in my wasteland

Here mercy found me

Grace unending came

This verse and the ensuing chorus emphasize the incarnation of Jesus. In doing so, this avoids expectation of miraculous change, instead drawing able-bodied persons into the realities of their own weaknesses and the recognition that God meets us within this state, something that may be more easily recognized by people with disability. The second verse draws upon Isaiah 55

I come to the waters

When I’m tired and weary

Burdened and troubled

Here you give me rest

The unforced way of grace

This confession of the weight of life’s burdens is again common to all human kind. In contemporary Christian choruses a lyrical turning point usually appears before the third verse. However, instead here this song sings of the beauty of this brokenness, inspired by the image of a stained glass window.

The church of the broken

Once far from your heart you

Pieced us together

Here inside this place

Oh such glorious grace

The bridge line, “Take heart God is here” is sung repeatedly, to offer hope from Isaiah 35, but excluding a promise of immediate healing. The song returns to the chorus refrain, reiterating God’s active pursuit of humankind.

This song was one attempt at grappling with the discussed realities and theologies, integrating them into the worship space. As with any work of art, there are positive and negative responses from the intended audience. Since its release in 2012, this song has been performed in Australia, the US, the UK, Italy, and Malaysia. Often it is framed as a congregational song, and sometimes as an act of intentional inclusion. Individuals have reported a deep affective response, and in many instances people respond in tears. Many times people have indicated they have been inspired to write about and from their own exclusion – experiences of disability, but also personal losses such as miscarriage and death. In contrast, however, the industry has been highly critical of the song and album, as echoed in its lacklustre reviews “I imagine this gentle, colourful recording playing quietly in the corner of a prayer room or used as a backing track for a worshipful dance or drama”[45]. On the whole, the contemporary worship world resists the redirection of its lyrical narrative. Whether such songs could ever offer a challenge to the genre of contemporary worship or become popular enough to be influential is yet to be seen.

Conclusion

The authors of this paper never consciously intended to seek a reformation of Christian worship practice. Two are entirely unfamiliar with the field of theology, and the third was casually employed with the intention of pursuing further study, and was genuinely surprised at the data that emerged. However, this is perhaps a reflection of pentecostal process, in that theological reflection is done in via, or “on the way”[46]. Currently many state university projects include researchers with a variety of skill sets and backgrounds. And, although pentecostal students largely endeavour towards more formal theological training, perhaps this article models a potential way forward for Australian pentecostal scholars interested in engaging social issues. It draws upon data collected in a research project undertaken by a Disability Centre affiliated with an Australian university, making it relevant to the current discourse on pentecostal spirituality. In so doing, the intention is to highlight the need for the church (as a community of Christians) to engage the idea of the spiritual support needs of the wider community.

In this instance, there is a great need for advocacy around the spirituality of people with a disability. There are Pentecostals (and Catholics, Anglicans and many others) employed in the disability field, who actively pursue and meet their client’s spiritual support needs. The research shows that good support workers provide a significant channel for championing the needs of people with a disability. Each group home is an ecosystem, and highly dependent upon its staff. However, wider advocacy is needed to cater to the spiritual support needs of people with disability in cases where staff has no knowledge of how to provide this support. It may be necessary for pentecostals to learn how to advocate for people whose needs are “similar, not the same” as their own constituency. For example, it may be difficult for a pentecostal disability worker to admit that Ramadan serves a cultural as well as religious purpose, or learn Catholic ways of praying to better support someone with disability. On the other hand, non-pentecostal workers also need education for how to provide encouragement and access to spiritual support for pentecostals (and other Christians) with disability. Pastoral care teams could benefit from education and training on disability and inclusive practices, with the intention to learn how to provide such spiritual support.

Additionally, as pentecostals grapple with claims that their churches are inaccessible and alienating for people with a disability, it is important for the discourse not only to centre on the value of participation, although significant to worship studies or liturgy. Pentecostal theologies provide opportunity to refocus discussion upon the contribution of people with a disability, and to reframe the ways society thinks about disability as a whole. As such, we enter into salvation in all its fullness, shalom or wholeness that is far more profound than the heavily marketed and hyped-up images provided by Western culture. This is a picture of a new telos, of human flourishing both inside and outside the church building. As such, this picture is embedded into our bodies and our minds through Christian worship, and gives us a role of partnership with the Spirit, in announcing the new heaven and the new earth.