Journal of Catholic Education Volume 23 Issue 2 Special Issue: Inclusion in Catholic Article 14 Schools 12-21-2020 The Absence of Asterisks: The Inclusive Church and Children With Disabilities Erik W. Carter Vanderbilt University Follow this and additional works at: https://digitalcommons.lmu.edu/ce Part of the Other Education Commons Recommended Citation Carter, E. W. (2020). The Absence of Asterisks: The Inclusive Church and Children With Disabilities. Journal of Catholic Education, 23 (2). http://dx.doi.org/10.15365/joce.2302142020 This Article is brought to you for free with open access by the School of Education at Digital Commons at Loyola Marymount University and Loyola Law School. It has been accepted for publication in Journal of Catholic Education by the journal's editorial board and has been published on the web by an authorized administrator of Digital Commons at Loyola Marymount University and Loyola Law School. For more information about Digital Commons, please contact [email protected]. To contact the editorial board of Journal of Catholic Education, please email [email protected]. The Absence of Asterisks: The Inclusive Church and Children With Disabilities Cover Page Footnote The author wishes to acknowledge grant support from the Calvin Institute of Christian Worship, Calvin Theological Seminary, Grand Rapids, MI. This article is available in Journal of Catholic Education: https://digitalcommons.lmu.edu/ce/vol23/iss2/14 Special Issue Article 168 Journal of Catholic Education Fall 2020, Volume 23, Issue 2, 168-188 This work is licensed under CC BY 4.0. c b https://doi.org/10.15365/joce.2302142020 The Absence of Asterisks: The Inclusive Church and Children with Disabilities Erik W Carter1 Abstract: Congregations are called to be communities of belonging. Yet, many churches struggle to meaningfully include children with disabilities and their families in all aspects of parish life. This article addresses 10 dimensions of belonging and their relevance to the inclusion of individuals with disabilities in their faith communities. To belong involves being present, invited, welcomed, known, accepted, cared for, supported, befriended, needed, and loved (Carter, Biggs, & Boehm, 2016). I address the importance of each of these areas, highlight relevant research, and suggest areas for reflection and response. Keywords: religious communities, inclusion, disabilities, religious education, worship aith is central to the flourishing of individuals with disabilities and their families. Scores of studies confirm what so many anecdotes affirm—spirituality is an important and F influential aspect of life for many individuals with disabilities (Baldwin et al., 2015; Boehm & Carter, 2019a; Liu et al., 2014). For example, a national survey conducted by the National Organization on Disability (2004) found that almost exactly the same percentage of Americans with and without disabilities described their faith as being somewhat or very important (i.e., 87% and 84%, respectively). Among families of children with disabilities, faith can also have special salience (Carter, 2019; Salkas et al., 2016; Speraw, 2006). The spiritual beliefs and church involvement of parents, siblings, and other relatives can be a crucial source of strength, support, and relationships in the midst of both ordinary and extraordinary challenges. 1 Cornelius Vanderbilt Professor of Special Education, Vanderbilt University The Inclusive Church and Children with Disabilities 169 Individuals with disabilities and their families also are central to the flourishing of faith communities. Like anyone else, they bring gifts, talents, and passions that are needed by others in their parish. Their testimonies and personal stories can positively contribute to the faith formation of fellow believers. Their life experiences and diverse perspectives can help broaden views of what it means to live faithfully in the world. Their friendships can bring life to people whom they encounter. And the avenues through which they serve can meet the needs of others in their midst. Indeed, churches are incomplete without the presence and participation of individuals with disabilities and their families. The Call on Congregations The call on congregations to be places of inclusion and belonging for individuals with disabilities and their families is clear and longstanding. The Scriptures are replete with commands to welcome the stranger (Matthew 25), to break down barriers to Jesus (Mark 2), to invite the overlooked (Luke 14), to affirm the image of God in every person (Genesis 1), to move the margins to the middle (Matthew 20), to upend societal hierarchies (Galatians 3), to see those who seem superfluous as utterly indispensable (1 Corinthians 12), and to love one another deeply (Matthew 22). In addition, a growing body of theological work has addressed themes of hospitality, belonging, healing, inclusion, and community in relation to disability (Fox, 2019; Reynolds, 2008; Yong, 2011). Dozens of formal statements and resolutions issued by different religious denominations also address why and where faith communities should be inclusive of individuals with disabilities and their families (Carter, 2007). Within the Catholic Church, several strong statements from the Vatican and the United States Conference of Catholic Bishops emphasize the importance of this call. For example, a 1999 statement, Welcome and Justice for Persons with Disabilities: A Framework of Access and Inclusion, emphasized: “Parish liturgical celebrations and catechetical programs should be accessible to persons with disabilities and open to their full, active and conscious participation, according to their capacity” (p. 1). Moreover, the Pastoral Statement of U.S. Catholic Bishops on Persons with Disabilities culminated in the following powerful point: “There can be no separate Church for persons with disabilities. We are one flock that follows a single shepherd” (United States Conference of Catholic Bishops, 1978, p. 9). In sum, the call to inclusion is not mere invitation; it stands as an explicit obligation. The Response of Congregations Unfortunately, this call is often met by an equivocal or evasive response. Although a growing number of churches are widening their welcome, far too many individuals with disabilities still experience wounding or rejection at the doorsteps of their parish. Several national surveys have documented significant gaps in the congregational participation of individuals with and without disabilities (e.g., Brucker, 2015 ; Li-Ching et al., 2008 ; Whitehead, 2018). For example, the 170 Special Issue Article National Organization on Disability (2010 ) found that 45% of Americans who identified as having a severe disability reported attending a place of worship at least monthly compared to 57% of respondents without disabilities. Other studies have documented the presence of attitudinal barriers among congregation members and leaders (Howell & Pierson, 2010; McNair, 2007; Patka & McDonald, 2015). Similarly, surveys of parents have highlighted the absence of needed supports for children with disabilities Ault et al. (2013a); Carter, Boehm, et al. (2016), and multiple research projects have noted the presence of architectural features that inadvertently limit access and full participation in a church (Holland et al., 2016; Vierkant et al., 2006; White, 2014). Although the public proclamations of most local parishes are open and inviting, the actual practices of too many churches reflect the presence of asterisks: • All are welcome (*except those whose behaviors or bodies diverge too much from prevailing norms); • Nobody is excluded (*except when resources, staff, or supports seem limited); and • Everyone serves (*except those predesignated as the recipients of ministry efforts). Such asterisks can quickly lead to absences. For example, Ault and colleagues (2013a) found that nearly one in three families (32%) reported having left their congregation because their daughter or son with disabilities was not welcomed or included. Similarly, more than one third (38%) of parents in a study by O’Hanlon (2013) said they considered switching congregations because of personal experiences related to their child with disabilities. Indeed, the church stories shared by many parents of children with developmental disabilities include statements that reveal the hidden limits of welcome (Gaventa, 2018; Poston & Turnbull, 2004): • We just are not equipped to serve your child. • We don’t really do disability ministry here. • Perhaps you’d feel more comfortable at a church with a special program for her. • How can we be certain she actually understands the meaning of communion? • We aren’t really sure he will get much out of being in our regular classes. • Her behaviors are a bit of a distraction. How might parishes become communities without asterisks? How might they welcome and weave children with disabilities and their families fully into the life of their community? This article The Inclusive Church and Children with Disabilities 171 addresses the importance of making movements that promote the belonging of all children in their local parish. To structure this discussion, I present a framework of belonging that has relevance across key areas of congregational life—worship, learning, service, and fellowship. In each of 10 areas, I suggest avenues through which parishes can reflect on their postures and practices. Finally, I conclude with recommendations for moving forward in this essential area