Moving Beyond Inclusion: The Story of One Family

Stace-Smith, H. & Pudlas, K.A. (2020)

In a previous article Pudlas (2019) provided an introduction and overview of the current pedagogic paradigm known as full inclusion and argued that the church, which is the body of Christ here on earth, ought to be at the forefront of the inclusion movement.

Here we will suggest that while inclusion is a good starting point, if we are to be authentic apprentices of Jesus then a true modeling of Christ’s love would be exemplified by communities where belonging is the norm. Drawing from the work of John Swinton (2012) as well as John Hull (2003), Thomas Armstrong (2012) and others, we suggest a continuum where proximity is a necessary starting point, moving toward inclusive praxis, with the ultimate goal being a community where all have a sense of belonging.

These terms, which may be esoteric in the abstract, will be illustrated in the narrative presented by Stace-Smith, in which she describes her lived experience of both the difficulties and celebrations of seeking church fellowship with her family, some of whom presented unique challenges. In the previous article, Cathy’s Story was presented, in which Cathy clearly was not included by the church she and her family attended. What follows is a story that is illustrative of a more positive outcome overall and of the transformation of a church body to one in which a family with challenges felt they belonged.

 Celebrating Madisyn’s Faith: A Snapshot of True Acceptance and Belonging

A six-year-old girl stands in front of her church congregation, dressed up for her special day. She has been barely able to contain her excitement all morning and now the time is finally here.  Her pastor passes her a microphone and in her quiet, shy manner, she recites a bible verse that she memorized for this very significant day, the day of her baptism. The congregation is completely silent as they hang onto her every word. The pride of her parents as she stands and publicly professes her desire to be baptized, is mirrored by everyone else in the church sanctuary. What a special moment! The pastor proceeds with her baptism ceremony.

To any average visitor that day this event would have seemed special, but they would not have understood the full magnificence of the event. This six-year-old girl is my daughter Madisyn, who was adopted by my family just 19 months prior to this event. As her mother, I had a different perspective. Madisyn has a diagnosis of autism and experienced trauma and severe neglect as a child. When she arrived in our home just over a year earlier, she was non-verbal, unable to communicate in any functional way. She was prone to severe tantrums and at times aggression. She was entirely dependent, not even able to feed herself. She had never been in a church building, or exposed to God in any way. This history is in stark contrast to her three new siblings, who were baptized as infants and were immersed in church their whole lives. Madisyn began attending church with our family shortly after her arrival. The congregation watched warily as Madisyn sometimes would begin screaming in the middle of a service, or would lash out at another child during a children’s message. Sometimes they observed a child completely in her own world, oblivious to those talking to her. Given this context, this day is miraculous. Not even two years later, Madisyn is standing in front of a large group of people, verbalizing her faith and desire to be a baptized member of this congregation. But perhaps, just as noteworthy is the fact that the congregation is equally as mesmerized by the event.

After the service, the congregation is invited by our family to the downstairs fellowship hall to celebrate the special day with Madisyn. Hot dogs and cupcakes, Madisyn’s favorites, are enjoyed by countless people. People flock to Madisyn to congratulate her and shower her with compliments and blessings. One such member of our church family calls me aside. She wants to be sure to thank me personally for allowing her to be a part of Madisyn’s transformation. Prior to Madisyn’s arrival, she had very little exposure to children with disabilities. She remembers how much Madisyn’s struggled upon her arrival, and feels Madisyn’s growth has been remarkable. She feels extremely blessed to have been included in her journey and states that our family is a blessing and example to those around us. She thanks me profusely and then walks over to Madisyn to chat, leaving me speechless, tears streaming down my face.

What does it mean to be “dis”abled?

While that scene may seem like the epitome of inclusion and belonging, the road leading up to that day was not always positive, and neither was the road after. In addition to being a parent of a child with autism, my husband and I have three other children. My eldest daughter, Rebekah, and my son, Eli, both have a myriad of emotional and behavioral diagnoses that could also be labelled as disabilities. They are both exceptionally bright and even their diagnosed “giftedness” is sometimes seen as a disability. As a parent of children with disabilities, my life experience has been a roller coaster ride of ups and downs, celebrating the positive moments and working hard to persevere through the difficulties, always seeking acceptance for my children. Church is no different. I desire my children to feel they are a part of the church community. And realistically, I recognize that this is likely going to be a continual journey requiring ongoing effort.

Why does this journey require so much effort? What does it mean to be disabled and why is this a stumbling block to acceptance within the church? To explore these questions, it is necessary first to consider the image of our creator. Scripture tells us “God created mankind in his own image, in the image of God he created them…” (Gen. 1:27, NIV). This idea presents a challenge for those with disabilities. If we are to understand our humanity in the context of God’s perfection, what does that mean for those who are not perfect, whose bodies are broken or physically impaired in some way? When we consider the idea that all disability, whether physical, sensory, or mental, is evident in our physical bodies (whether foot, ear, or brain), then all disabilities can be categorized as a physical ailment (Hull, 2003). In contrast to those that are “able-bodied” (Eiesland, 2004, p. 2), people with “dis”abilities may be seen as falling short of this perfect physical image of God. When considering societal views, Eiesland refers to “destructive stereotypes about people with disabilities” (p.1). Hull (2003) furthers this idea by maintaining that disabilities themselves can sometimes be attributed to a disabled person’s deficiency in faith or to their sin, their physical disability a “continual reminder of the imperfect human condition” (p. 10) and the need for redemption. Within the context of Christianity, Hull tells us that Christians with disabilities are dissatisfied with how disabilities are understood. It is no wonder then that “many disabled people claim that it is the social rather than the physical aspects of a disability, which are most alienating” (Hull, 2003, p. 7). As a person with a congenital disability, Eiesland maintains that people with disabilities have depreciated views of themselves and are lacking in genuine self-worth. She postulates that the problem is not within the physical body, but within a society that needs to be changed in order for the full value of all human beings to be recognized.

 Redefining Disability

Instead of viewing disability in the context of falling short of the image of God, Hull suggests that it may be more beneficial for Christians to view disability in the context of the human body itself as an epistemic reality. All people, with or without disabilities, were created uniquely by God: “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made” (Ps. 139:13, NIV). Just as there is a plurality to the extensive variations we see in the physical bodies of each other, there is also a plurality in the way that our bodies perceive and experience the world around us (Hull, 2003). Armstrong (2012) refines this idea by suggesting a concept of ‘neurodiversity’ which “seeks to acknowledge the richness and complexity of human nature and of the human brain” (p. 11). These viewpoints allow Christians to shift their focus from imperfection to a celebration the diversity of God’s created people, and their unique life experiences.

On the other hand, bodily imperfection does not have to be seen as falling short of the perfection of God. Both Eiesland (2004) and Hull (2003) postulate that disability can be better understood by focusing on the brokenness reflected in the body of Christ. Eiesland introduces us to a “disabled God” who in resurrected form bears the marks of profound physical impairment in his hands, feet, and side. She maintains that if we seek to understand the impairments borne by Christ, we may understand with greater clarity the fullness of God in the diversity of those around us. Hull furthers this image by extending the perfect image of God through Christ as a “wounded perfection, a scarred perfection, and imperfect perfection” (p.14). This beautiful image is made more complete when we realize that these wounds are a reminder of the reason why Christ’s body was broken, in order to release the life of Jesus as a gift of salvation to the world. Hull extends this image of strength through weakness and life through death, describing the perfection of God as “a perfection of vulnerability and of openness to pain” (p.23).

When considering this image of an imperfectly perfect God, we can reflect upon the brokenness found throughout the world. We can identify that all have fallen short of God’s original perfect design for human kind, and all have elements of brokenness. Therefore, in the brokenness of others we must see a reflection of ourselves. Following Christ’s example, we are called to a ministry of sharing in the vulnerability and pain of others, to “be devoted to one another in love [and] honor one another above [ourselves]” (Rom. 12:10, NIV). We should further “accept one another, then, just as Christ accepted [us], in order to bring praise to God” (Romans 15:7, NIV). When considering this calling, we need to ensure that our various forms of ministry lead to others’ belonging. How do we ensure that this happens within our church communities? To facilitate the end goal of belonging in the church, we must first achieve proximity, and then further the continuum by facilitating inclusive praxis.

 Proximity

Proximity can in simple terms be defined as being physically present. For inclusion to work, being in the same general space is a necessary starting point. Proximity was lacking in Cathy’s story (Pudlas, 2019) as she was not invited to Sunday school with her peers, but instead left sitting alone on the church pew. How can we ensure Cathy’s story is not repeated and ensure that we welcome people into congregations? For proximity to occur, a necessary starting point is for congregations to be made physically (including visually and audibly) accessible. As I mentioned previously, Madisyn’s transition into our family and into our church was not an easy one. For her, being physically present was a real challenge at first. Not knowing what to expect in an unfamiliar and overstimulating environment, and not being able to communicate her needs, Madisyn would often have severe meltdowns in the middle of a church service. Embarrassed and even ashamed, I would try to get her out of the church sanctuary as quickly as possible.  What I soon realized, however, was that Madisyn’s meltdowns did not improve when she was removed from the perceived stressful situation. They would, in fact, worsen. It became evident that for Madisyn to learn how to attend the church service, she needed to be in the church service. We tried to stop removing her from the sanctuary when she had tantrums. We would work through our calming and de-escalation techniques in the church sanctuary, in the middle of the church service. While this was uncomfortable for me and likely shocking for our fellow church members at first, it became more comfortable for everyone in time. The meltdowns lessened and eventually disappeared altogether. For Madisyn, being physically present in church, even in imperfect circumstances, was a necessary first step to her feeling included.

If physical accessibility is a first step to proximity, then congregations must be socially and emotionally inviting and accessible in order to maintain the physical presence of people with disabilities. One way for congregations to be perceived as socially and emotionally inviting can be more fully understood in the ideas explored in care theory. Schat (2016) explores the idea of care theory as one of the core elements of invitational theory. Those who feel cared for, feel invited and welcomed. Schat maintains that care theory is profoundly impacted by perceptions, in that “care is not completed until both participants recognize it as care” (Schat, 2016, p.15). In the context of schools, a student’s experience of their teacher’s care is dependent on whether they perceive that their teacher is caring, regardless of the teacher’s intentions to be caring. This idea can be extended to church congregations. That is, for congregations to be perceived as inviting, they need to be perceived as caring by those they are trying to invite and include.

There was a time, a few years ago, when a breakdown occurred between my family and our church community. In our church at that time, Sunday School occurred partway through the church service. My children had been attending Sunday School, but gradually things were going less and less successfully. At this time in our lives, Eli and Rebekah were going through a very difficult time emotionally and behaviourally, and many of the negative symptoms of their diagnoses were not under control. This resulted in my children feeling so anxious or frustrated that we sometimes needed to go home in the middle of the service. Often their sensory needs were so severe that they could not stay in the church sanctuary. They would become overwhelmed with the noise or the crowds of people. Anxiety about going to Sunday School became more and more of an issue. It got to the point that we could not persuade our children to go downstairs, and if we did get them physically in the Sunday School room, they would sometimes run away and hide. While Madisyn did not share in the extreme emotional needs of her two siblings, she was not successfully or meaningfully participating in the Sunday School lessons either. She would resort to behaviors that both disrupted the classrooms and embarrassed her siblings. My youngest daughter, Lydia, would not attend Sunday School without her siblings. This led us to make the decision to stop attending Sunday School and keep our children in the service with us. There were days where the needs of our children were so great that we could not make it to church at all, and if we did make it to the church service, our kids would watch as all of the other children were dismissed to Sunday school and they would remain behind in the sanctuary. For several months, my children were not able to be included meaningfully in our church family. While they were physically invited, they no longer felt physically comfortable or emotionally safe in their church environment.  Instead of being in fellowship with our church family, we began to feel isolated from them. We began to feel neglected and like others didn’t care about what we were going through enough to help us.  At this time in our lives, our family was not perceiving an attitude of care by our congregation, regardless of the intentions of care that our church family was likely trying to portray. To get to a place of belonging, therefore, we needed more than proximity. To get to the point where my children could be included in their church community again in a meaningful way, it was necessary to consider and advocate for elements of inclusive praxis.

Inclusion

It is not enough just to be invited and welcomed to a physical space. Additionally, we need to ensure the physical space is set up for people to thrive. Instead of trying to change the person to be able to function in the existing environment, it is often more successful to change the environment to help meet the person’s needs. This inclusive practice is described by Thomas Armstrong (2012) as ‘positive niche construction.’ He argues that as there are a wide variety of diverse brains in this world, educators should respect each unique brain and “seek to create the best differentiated learning environment within which it can thrive” (Armstrong, 2012, p. 13). Armstrong identifies seven components of positive niche construction that are helpful in creating inclusive environments. For the purposes of applying this theory to church environments, we will explore five of these components: strength awareness, strength-based learning strategies, environmental modifications, enhanced human resources and  Universal Design for Learning.

Strength Awareness

Strength awareness is simply making an effort to recognize the strengths of individuals. As we have already explored, people with special needs are often seen in a negative light in terms of their disability and in areas where they are unsuccessful. This not help a person to feel welcomed or invited and can lead to a negative self-image. However, scripture speaks to all of God’s children as having at least one gift. Scripture states “we have different gifts, according to the grace given to each of us” (Rom. 12:6, NIV) and that “each of [us] should use whatever gift [we] have received to serve others, as faithful stewards of God’s grace in its various forms” (1 Pet. 4:10, NIV). When the focus shifts from the shortcomings of a person to their strengths, a much more productive environment will ensue. Thus, a useful start to constructing positive niches for neurodiverse individuals is to discover their strengths, gifts, passions, and interests, in order that we might help them develop and use these gifts for good.

Once knowledge of a person’s strengths is gained, this knowledge can be used to create strength-based learning strategies. Armstrong (2012) argues conventional approaches to learning have often failed for students with special needs. Therefore, they often need unconventional, custom tailored approaches that focus on their strengths to help them learn. For my children, it was implementing this element of positive niche construction that allowed us to attend Sunday School again. At the time, our Sunday School program was divided into three different classrooms, separated by age and grade level. The two older classes were where my children were meant to attend. The middle class was organized around an early elementary approach, with simplified lessons complemented by visual aids and crafts. The older class was organized for upper elementary and focused more on reading and discussing the Bible. So my children could attend a class that focused on each of their strengths, the Sunday School teachers allowed us to switch Eli and Madisyn to the opposite classes. Although by her age Madisyn should have been in the upper class, the middle class was a better fit. Madisyn is a very artistic and visual person. The visual aids to the lesson helped her to understand the lesson better, especially given her language delays. We also moved Lydia from the preschool class into the same class as Madisyn. In this new arrangement Madisyn was able to take on a leadership role with her younger sister that allowed her to use her strengths in a positive and authentic way. Eli, by his age, should have been in the middle class. However, as noted earlier, one of Eli’s greatest strengths is his intellect. He is an avid reader and was used to reading at a high level. Thus, he was bored in the middle class and his challenges with the fine motor tasks involved in the crafts caused frustration rather than a reinforcement of learning. In the upper-level class, Eli was happy to extend his knowledge by actively participating in the discussions, and becoming more familiar with his Bible. As Rebekah was no longer being embarrassed by her younger sister, she was now sometimes able to attend her class.  Rebekah has tremendous strengths in working with younger children, especially those with emotional or behavioral issues like herself.  When she was not emotionally in a place to attend her own class, Rebekah was invited to volunteer in the preschool class and was able to thrive in this environment. While these relatively simple changes alone did not solve all of the problems for our family, it was a helpful start in the right direction and gave us a renewed hope.

Environmental Modifications

Environmental Modifications also helped to further improve things for our family. This concept can be explained in terms of finding the best environment for people to learn and function. Armstrong (2012) refers to the concept of ‘least restrictive environment,’ a term in education that refers to children’s rights to be included in the regular classroom with peers as much as possible. In a church setting, the sanctuary and even Sunday School classrooms can be considered the least restrictive environment.  However, for many neurodiverse individuals, the regular environment is not always the most optimal for learning. Armstrong invites his readers to consider the whole physical space surrounding the environment as “a complex network of possible microhabitats for meeting the varied needs of students with special needs” (p. 23). As aforementioned, the church sanctuary had often become overstimulating for my children, especially for Rebekah who had suffered a concussion that exacerbated her sensory processing difficulties. When she would have extreme experiences of sensory overload, we would often have to leave church. For her, it was not possible to thrive in the regular environment. In desperation one day, we sought refuge for Rebekah in the church ‘cry room,’ a room designed for nursing mothers, and mothers with young children. This room is positioned at the back of the sanctuary, with one-way glass and a speaker system so mothers can see and hear the service whilst maintaining privacy. This room turned out to be exactly what Rebekah needed. We could turn off the lights and speakers in order for Rebekah to manage her sensory overload. As she became more comfortable, we could gradually increase the volume on the speaker so that Rebekah could hear the service and begin to participate as she was ready.

Enhanced Human Resources

Enhanced Human Resources refers to the “building up of a rich network of individuals who support the growth and development of a neurodiverse student” (Armstrong, 2012, p. 19). This can refer to the vast variety of experts who may be involved in a child’s life, but it can also refer to enhancing the knowledge and skills of existing people in a child’s life. Armstrong postulates that enhanced human resources can also involve strengthening key relationships, reinvigorating faltering relationships, or fostering new relationships.

One of the reasons that it was so difficult for my children to attend Sunday School was a shortage of human resources. In the school environment, my three elder children have access to Educational Assistants to help with their learning journeys. As is a reality in many churches, the shortage of volunteers meant that my children did not always have the extra support they needed to be included successfully. If extra support was available, they did not always know how to support my children. Again, a restructuring was helpful here. When considering how best to meet the needs of the Sunday School, the Sunday School team decided to change the time to prior to the service. As many volunteers were not willing to miss the church service, this allowed for an increase in volunteers who were willing to give time beforehand. More volunteers meant the structure of the program could be changed to a co-teaching model, with two teachers assigned to every classroom. As teachers in each classroom were now more consistent, they were able to strengthen the relationships with their students. In Rebekah and Eli’s class, the teachers decided to define their roles such that one teacher handled more of the teaching aspect, and one handled more of the emotional needs in the room. The teacher who wanted to focus on the emotional needs devoted her time to helping the students feel more comfortable. She met with me prior to beginning the class to understand Rebekah and Eli’s needs more fully and how best to meet their needs. In this situation, she was an enhanced human resource for them. Once again, these simple changes made a positive difference.

Universal Design for Learning

The last element of positive niche construction that will be discussed is Universal Design for Learning or UDL. This element can be described as “removing barriers to learning for kids with disabilities in ways that also enhance everyone else’s ability to learn” (Armstrong, 2012, p. 17). In the school or Sunday School context, this often can be done by adapting lessons and activities for all participants to design an environment that can accommodate a wide variety of learning differences. For example, when Madisyn was younger and her speech and language were not as developed, she could not learn new Sunday school songs very well. However, if actions and body movements were included when learning the song, she could participate more fully. Providing actions was necessary for her, and beneficial to all of the children learning the song.

Within the church context, one of the best UDL examples for my children has been the printed church bulletin. We live in a modern world that is moving towards the written elements of services projected on a screen, instead of printed on paper. Yet for some, this printed bulletin is critical, and for others still preferred and beneficial. We began to have more success in making it through a church service when each of our children was given their own printed bulletin.

For Madisyn, the church bulletin serves as a personal visual schedule. It is a well-known fact in the field of Special Education that visual schedules are a type of visual support that is helpful for children with special needs, and especially for those with autism. Visual schedules can be created with pictures, photographs, and, as a person becomes more literate, words. The intent of a visual schedule is to help neurodiverse individuals understand and manage the agenda of a certain period of time. Madisyn has a difficult time maintaining her eye gaze at the front of the room, or attending to and making sense of words presented orally (auditory discrimination). With a printed church bulletin in hand, Madisyn now can calmly attend to and participate in a full church service. She is often the first to stand or sit down in a service, sometimes long before the pastor invites the congregation, as she is prompted by the words in her bulletin. Rebekah, Eli, and Lydia also have difficulty with auditory discrimination, a characteristic of children with ADHD as well as autism. Their learning disabilities make visual tracking on a projected screen difficult. The printed bulletin is helpful for them. Rebekah also is helped by the visual schedule aspect, the church bulletin allowing her to anticipate the order and structure of the church service. In this respect she can now monitor her mood, and plan and independently manage any needed breaks when beginning to feel overwhelmed.

Several months ago, our family moved to a new community and therefore became members in a new congregation. The first few services we attended were somewhat difficult. The congregation is quite small and there were only a few printed bulletins available. One Sunday, when the church ran out of bulletins, an usher asked my children to give their bulletins to other members. I did not realize how much my children depended on the church bulletin until they were taken away. We barely made it through that service. Overall, this congregation is to be commended for their efforts to make us feel welcome. When one member later asked if there was anything they could do to help our children feel more comfortable, I asked if four bulletins could be printed and set aside for my children each week. A simple thing, but so crucial for our family. They now always have access to their bulletins.

Implementing Inclusive Practice

As we consider these inclusive elements, the task of discovering what each uniquely neurodiverse person needs to feel included may seem daunting. Pudlas (2019) invites churches and church leaders to consider how welcome families who have children with learning challenges are in their congregations. He recognizes that church leaders need knowledge and skills for inclusion to happen. Yet, the reality is that church ministries are often staffed with volunteers rather than special educators with a wealth of experience and knowledge of inclusive practices. How do we overcome this lack of knowledge and experience and find out what neurodiverse children in our congregations need?

Eisland (2004) suggests that hearing the call for justice for people with disabilities starts with listening to what people with disabilities express. In Life Together, Deitrich Bonhoeffer (1954) also refers to this ministry of listening, claiming that “just as love begins with listening to His Word, so the beginning of love for brethren is learning to listen to them” (p.97).  In some cases, listening to the ideas of persons with disabilities may shed light on how to make them feel more included. However, in some cases, it may be more appropriate to listen to a child’s parents. Parents are experts in what works well for their child and what they need to be successful. Parents who remain quiet and fail to advocate for their children could benefit from an “ear that will listen” (Bonhoeffer, p. 97). As the Sunday School teacher committed to meeting Eli and Rebekah’s emotional needs and the welcoming member of our new congregation demonstrate, it may be necessary to take the first step and initiate the conversation. A few months after we became members of our new congregation, our pastor requested a meeting with us to discuss the needs of our children before becoming their teacher in Confirmation Class. He demonstrated a listening ear, and a desire to learn how to make their learning experience a successful one. If listening can be achieved, church leaders and/or parents are well on their way to helping others move beyond inclusion towards belonging.

Belonging

Swinton (2012) describes true belonging as learning to love one another in and through Jesus to create communities that embody Christ’s love. Bonhoeffer (1954) reflects on the privilege of living in visible fellowship with other Christians, their “physical presence…a source of incomparable joy and strength to the believer (p.19). Moreover, scripture relates “how good and pleasant it is when God’s people live together in unity” (Ps. 133:1, NIV). Bonhoeffer emphasizes that fellowship is a blessing and a privilege that not all Christians receive. Those who are marginalized may not be included in fellowship due to the negative attitudes of others. In describing the words of Jean Vanier, Spink (2006) explains how people often look upon those who may be perceived as ‘weak’ as problems to be resolved, “refusing to enter into a dialogue of trust with those that are oppressed and in distress (chapter 1, para. 2). Not surprisingly, this exclusion from community leads those with disabilities to a wounded self-image and feelings of guilt and shame (Spink, 2006). Bonhoeffer (1954) warns Christians about the danger of judging fellow Christians, preventing them from seeing the judged person as the richness of God’s creation. He advocates for the necessity of prayer and intercession as a crucial component of fellowship. Bonhoeffer further suggests it is more important to talk to Jesus about people than it is to talk to people about Jesus, since it is the Spirit that brings about change. If we allow the Spirit to work in us to change our attitudes toward people we may otherwise marginalize, we may bring about a work of reconciliation so that through us people will come to experience belonging.

As Swinton (2012) asserts that communities embody Christ’s love in order to achieve belonging, it becomes important to look to Christ’s example when considering our own Christian communities. Christ often prioritized ministry to the weak. We see this in John 5, through the healing at Bethesda; in Luke 14, where Jesus instructs us to ” invite the poor, the crippled, the lame, the blind” (Luke 14:13, NIV) to our banquets as opposed to our friends and family; and in countless other occurrences. If our communities are to be in Christ, we should reflect upon Christ’s example of love and mercy. Bonhoeffer outlines God’s instruction of brotherly love reflected in the divine love he has shown us through Jesus. By revealing Jesus to us as our brother God shows us his mercy, thus teaching us to be merciful to our brothers. Therefore, Christian brotherhood is a gift from God. It is “not an ideal which we must realize; it is rather a reality created by God in Christ in which we may participate” (Bonhoeffer, 1954, p. 30).

A notable example of communities that emanate this brotherly love can be found in the L’Arche communities originally developed by Jean Vanier. Vanier found his calling in living in community with adults with cognitive disabilities. He sought to bring those individuals marginalized by society into a ‘family’ in which they could find security and peace in which to grow (Spink, 2006, chapter 1, para 4). This led to the creation of L’Arche communities, “where people with disabilities and assistants could experience together the joy and difficulties of a community life inspired by the Beatitudes” (Spink, 2006, chapter 1, para 3). Vanier’s directive was to do whatever the Holy Spirit inspires in order to build up a world of love around people with disabilities (Spink, 2006, chapter 6). Thus, persons with disabilities and assistants embarked on a mission to get to know one another, to learn how to live together, to care for one another, to have fun together, and to pray together (Spink, 2006, chapter 4). The success and beauty created by l’Arche communities has resulted in the blossoming of communities all over the world. At time of writing, there are over 153 communities and 21 community projects, in 38 countries across 5 continents, involving over 10,000 people with and without disabilities (retrieved from L’Arche international website, https://www.larche.org/in-the-world#all).

The ultimate aim of l’Arche was growth in love through the welcoming of others and in service. It was originally a place to serve those with disabilities, driven by an act of compassion. However, Vanier and others did not expect those they were serving to give so much back to them. Spink discusses the very concrete riches of the “biblically poor” (chapter 1, para. 1) as being a “revelation of the glory of God” (chapter 1, para. 21), “the source of the community’s life” (chapter 1, para. 17), and “carriers of so much life and love” (chapter 5, para. 37), whose “thirst for friendship and communion” (chapter 5, para. 37) had the capacity to lead others in to communion. Those who were being served were actually able to serve others in profound ways. Spink (2006) notes that it was often the ‘assisted’ who were able to help the ‘assistants’ rediscover their faith, when they were going through periods of difficulty (chapter 4). Bonhoeffer (1954) also affirms this idea by maintaining that “every Christian community must realize that not only do the weak need the strong, but also that the strong cannot exist without the weak” (p.94). Thus, the initial vision of community characterized by the strong helping the weak, moved more towards equality, where all were regarded as “sharers in a life of communion” (Spink, 2006, chapter 1, para. 2).

A key attribute of church communities where all belong is that of interdependence among members. Scripture models interdependence within a community by stating, “Just as each of us has one body with many members, and these members do not all have the same function, so in Christ we, though many, form one body, and each member belongs to all the others” (Rom.f 12:4-5, NIV). In referencing care theory, Schat (2016) maintains that there are two human-related care needs; both the need to be cared for and the need to care for others. Furthermore, for a relationship of care to be perceived, the reciprocal participation of two contributing parties is needed. In describing the concept of Social Role Valorization, Pudlas (2019) notes the goal of seeing all persons as valued. Bonhoeffer postulates that in well-functioning communities it is crucial that every individual is an indispensable link in a chain. With every link securely locked, the chain becomes unbreakable. Thus, in a strong community, every member has a task to do. They not feel useless; instead, they feel worthwhile.

When I asked Rebekah what helps her feel like she belongs in her church congregation, she thought for a few minutes and then replied: “When I get to help out and help others, I feel like I belong.” What moved Rebekah past being included to a place of belonging was being able to use her gifts to serve others. Rebekah thrived when encouraged to use her gifts to volunteer in the church nursery or to help in the church craft and bake sale. Eli thrived when encouraged to volunteer in the church sound booth and as a reader of church scripture during the church service. Madisyn thrived when given the opportunity to help lead worship by singing at the front of the church and as a church greeter at the beginning of the service. As Armstrong (2012) taught, having an awareness of the strengths and gifts of neurodiverse individuals is crucial for inclusion to take place. Having the ability to facilitate the using of those gifts to serve others is crucial for people to feel like they truly belong. All members belonging to the body of Christ, need to feel that they can contribute using their unique gifts.

Five years after the special snapshot of inclusion and belonging detailed on Madisyn’s baptism day, it is Christmas Eve. Our children are all bubbling with excitement. The Christmas Eve service is one of our family’s favorite Christmas traditions. Rebekah has been preparing all afternoon, braiding and twisting Lydia and Madisyn’s hair into elegant hairstyles. We arrive early at church to practice for their small parts in the Christmas Eve service. Our children skip into the church narthex and greet their pastor. Rebekah finds the mailbox of a fellow church member who shares her love and talent for crafting and deposits a small handmade clay angel ornament inside. We arrive at our seats to find four Christmas treat bags and small devotion books that had been delivered by congregation member who is thrilled to have our children as fellow members of her church. Lydia is so excited, she can’t sit still. Madisyn very seriously scans the church bulletin, preparing for the special moments to come. Eli pulls the pastor aside to discuss how his part in the service will work. Rebekah is overcome with anxiety and works to regulate herself. There are visitors here tonight and there are more people in the congregation that we are used to.

The service starts and we join together listening to scripture and singing Christmas hymns and carols. We listen to five readings, each completed by a different member of the congregation. As another song comes to a close, Eli takes on a new focus. His turn is coming soon. He catches the pastor’s eye and watches as the pastor brings a stool to the pulpit. With a solemn air of determination, Eli walks to the front of the church, bows before the altar and takes his place on the stool beside Pastor. Leaning in to reach the microphone, he begins his reading in a clear, steady voice. He proceeds to deliver the word of God to both the visitors and fellow members of his congregation. As he takes his seat, his three sisters are getting ready for their turn. Rebekah, Madisyn and Lydia stand at the front of the congregation, each holding a microphone with slightly shaking hands. They look stunning in their Christmas dresses and fancy hairstyles. Rebekah stands behind her sisters. I am wondering if she will be able to conquer her anxiety enough to go through with her part.  The song begins to play and Rebekah begins her solo of the first verse of Do you Hear what I hear in a quiet but beautiful voice. Once again, a hush falls over the congregation as everyone strains to hear her voice. As she moves past the first few lines and into the chorus, Madisyn and Lydia’s confident voices join Rebekah’s, adding a beautiful fulness to the song. Madisyn and Lydia each complete a solo verse and the three girls join together again for an enchanting trio. As the song draws to a close, the congregation holds their breath as Rebekah again delivers the last line of the song as a solo, and you can see her smile as she does so, knowing how much she is blessing others with her voice. The appreciation of the congregation is evident in their spontaneous applause. As the service draws to a close, Madisyn and Lydia run out of the church sanctuary to greet people as they leave the service, handing out Christmas ‘goodie’ bags to all of the children and youth. As we make the drive home late on this Christmas Eve night, I am again so thankful to be in another congregation where we all belong.

References

Armstrong, T. (2012). Neurodiversity in the classroom: Strength-based strategies to help students with special needs succeed in school and life. Alexandria, VA: ASCD Publications.

Bonhoeffer, D. (1954). Life together: The classic exploration of Christian community. New York, NY: HarperCollins Publishers.

Eiesland, N.L. (2004). Encountering the disabled God. The Bible in Transmission, Spring, 1-4.

Hull, J.M. (2003). The broken body in a broken world: A contribution to a Christian doctrine of the person from a disabled point of view. Journal of Religion, Disability and Health, 7(4), 5-23.

Pudlas, K.A. (2019). Faithfully inclusive communities: How welcoming is the body? Northwest Institute for Ministry Education Research. www.nimer.ca (retrieved Nov 26, 2019).

Schat, S. (2016). The communication of care and school success: Exploring the link between care theory and invitational theory. Journal of Invitational Theory and Practice, 22(1), 7-23.

Spink, K. (2006). The miracle, the message, the story: Jean Vanier and l’Arche [Kindle version]. Retrieved from Amazon.com

Swinton, J. (2012). From inclusion to belonging: A practical theology of community, disability and humanness. Journal of Religion, Disability & Health, 16(2), 172-190.

 

Heather Stace-Smith graduated with her MA in Educational Studies in Special Education from Trinity Western University. She currently is serving as the Educational Support Services Coordinator at Kamloops Christian School. Heather has been working with individuals with special needs in various capacities for over 20 years. In addition to being a parent of 4 beautifully neurodiverse children, Heather and her husband Rob are often foster parents. Heather’s passion and calling is creating and supporting high-quality inclusive learning environments within a Christian context.

Ken Pudlas earned his EdD at the University of British Columbia. He is a professor in the School of Education at Trinity Western University and founding director of the TWU MA in Educational Studies in Special Education. He is also the director of the Minor in Special Education which has grown in popularity as pre-professional teachers realize the ever-increasing diversity among learners in today’s classrooms. Ken has presented locally, nationally, and internationally on topics related to learners with diverse needs.

Author Copyright

Stace-Smith, H. & Pudlas, K.A. (2020) Moving Beyond Inclusion Toward Belonging. Northwest Institute for Ministry Education Research. www.nimer.ca (retrieved [Date Accessed].

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