Our focus in this paper is on efforts to include persons with developmental disabilities in faith communities. We provide a review of the relevant literature on religious participation and faith communities for persons with disabilities and blend the limited data available on these topics with the perspectives of individuals whose efforts focus on these concerns. Topics explored are the implications of being part of the faith community in terms of its impact on quality of life, the barriers to inclusion in such communities, strategies for overcoming these barriers, and special considerations for adults with mental retardation or other developmental disabilities. Discussion of the implications for enhancing inclusion in faith communities is provided.
Spirituality is an important part of human experience that may be expressed both through religious practice and through expressions of personal meaning and values … spirituality, spiritual growth, and religious expressions of spirituality are rights that should be honored. (American Association on Mental Retardation [AAMR], 2001/2002, p. 1)
This excerpt from the 2001 AAMR Statement on Spirituality and Religious Freedom offers a concise but powerful expression of values that guide and are embodied by current progressive communities of faith and supporting entities. Although religious life in the United States has often been ignored by professionals working with persons who have disabilities, religion is a significant facet of American culture (McNair & Swartz, 1997).
According to the 2000 National Organization on Disability (NOD)/Harris Survey of Americans With Disabilities, “roughly 85 percent of people both with and without disabilities consider religious faith to be important to them” (U.S. Newswire, 2001, p. 1). More recently, according to a 2004 Harris survey (Hanson, 2004), 84% of people with disabilities reported that religious faith was important or very important to them (an almost identical number as expressed by persons without disabilities), while only 8% (vs. 8%) indicated that it was not at all important. Consequently, the move to fully include persons with disabilities in opportunities for religious or spiritual expression is a logical extension of the philosophies of normalization and inclusion. Further, faith communities provide an important opportunity for persons with disabilities to experience valued social roles (e.g., church ushers, choir members, altar boys/girls, committee members, prayer group members). This opportunity reflects Wolfensberger's (1998) emphasis on the importance of valued social roles as consistent with his concept of social role valorization.
In this paper we address five major issues: the implications of religious faith and being part of a faith community for quality of life; barriers to inclusion in faith communities, including attitudinal, liturgical, theological, and services and supports; strategies to overcome such barriers; examples of inclusive faith communities; and special considerations for adults with mental retardation or other developmental disabilities. We conclude with a discussion of the implications of faith and religion in the lives of persons with disabilities. We provide a review of information on issues in faith communities related to the inclusion of people with disabilities for those working in the field, for those who belong to faith communities, and for persons who want to have their family member included in faith communities.
Value of Religious Faith and Inclusion in a Faith Community
Gleeson (2001/2002) indicated, based on his research review, that the benefits of religious faith and belonging to a religious community for the general population include the following: greater longevity, better management of stress and crises, and the experiencing of a greater sense of meaning and purpose in one's life. In the absence of any extensive research addressing this question, it is reasonable to conclude that such benefits should also extend to persons with disabilities. The discussion below highlights the values that may accrue from participation in inclusive faith communities.
Impact on Self-Concept
From a philosophical standpoint, and particularly with respect to persons with disabilities, professionals in the field have suggested that spirituality and religion may provide a means for conceptualizing oneself beyond the traditional medical construct (e.g., a person with a disability) and according to a broader and more holistic view (Boswell, Knight, Hamer, & McChesney, 2001; Nosek, 2001). In other words, a person is not simply defined by his or her disability, a self-definition that is unnecessarily limiting and that may also have negative implications for self-esteem. Thus, it may help to counterbalance what Swinton (2001) noted as the tendency in Western culture to “medicalize” disability and illness, in which “health is defined primarily as the absence of disease or infirmity” (p. 39). Thus, to be healthy in the case of a disability, one's difficulties are seen as “a challenge to be dealt with or an obstacle to overcome” (p. 41).
Nosek (2001), in her work on self-esteem and women with disabilities, discussed the effects of negative messages on these women from not only medical professionals but teachers, families, and friends. Feelings of “being a burden, being ugly, being damaged goods, (and) being unworthy of attention to meet special needs” (p. 8) commonly result. In addition, many women in her study reported “loneliness, frustration, anger, and depression” (p. 9). However, many “found solace in prayer and involvement in religious activities” (p. 9). One woman with postpolio syndrome and scoliosis cited a positive effect of spirituality on her self-concept: “It sort of helps me to identify myself, thinking I am a woman created by God and I am so precious and I am so loved and I have so much beauty inside of me” (p. 4).
Anecdotal evidence of the benefits of spirituality and participation in faith communities also exists with respect to persons with developmental disabilities. For example, Bridges to Faith, located in the New Bedford (Massachusetts) area, is an interfaith and collaborative effort of over 40 congregations to provide opportunities and support to persons with developmental disabilities and their faith communities with the goal of inclusion (Perkins, 2001/2002). People connected to these faith communities with the help of Bridges to Faith say that they “feel like they belong to a family” (Perkins, 2001/2002, p. 3). Malmquist (2001/2002) shared this account of one man's experience in the program:
David, 47, has been attending St. Francis Xavier Church for three years with his Faith Companion, Bob, and Bob's family. They attend Mass every Sunday where David says, they “pray to God. It makes me feel good to talk to God.” He receives communion regularly and likes to sing. Whenever he goes anywhere and they pass by the church, David announces proudly, “That's my church.” (p. 1)
Friendship and Belonging
Another powerful impact that may be related to participation in faith communities is that of social relationships, including friendship and a sense of belonging. For example, Gleeson (2001/2002) reported that individuals with developmental disabilities who lived in a group residence in New York and who were taken regularly to worship services in faith communities experienced a level of acceptance and friendship that had a significant impact on them. They returned from the services and told others about their experiences. In effect, they encouraged their peers to participate in such services, and sometimes they played tapes and taught them the hymns they had learned. Requests to participate in similar worship services were reported to increase dramatically.
Swinton (2001) related his experiences with a 17-year-old man with Down syndrome. The young man, Stephen, while residing in an institution most of his life, regularly attended worship services in the institution's small chapel within this segregated setting. Swinton (2001) reported the following:
Stephen loves to worship God. … He has no idea about the theological technicalities of what is going on within the service of worship. He doesn't know the words of the liturgy, and he finds little meaning in the words of the prayers and the hymns. He simply knows it is a place where he can go to sing and be with his friends. He knows the word “Jeeshuss,” and takes great pleasure shouting it out, often during the quietest part of the service. However, this “disruption” is not a problem. … there is a sense of acceptance and community that I have rarely experienced elsewhere; a feeling that we are church in a very real and meaningful sense. (p. 28)
Swinton (2001) further explained that friendship is a potent source of revalidation because it provides people with a sense of value and belonging. As he noted, this is in contrast to many of the values esteemed by the Western world in which emphasis is placed on “productivity, competitiveness, intellectual prowess and social success,” and, consequently. a world in which “people with (mental retardation) are excluded from vital sources of value and self-esteem” (p. 49). Swinton suggested that the church community can offer the pastoral gift of friendship and, therefore, a faith community can serve as a sanctuary and corrective environment away from the negative aspects of a competitive society.
The benefits of inclusion in faith communities are well-illustrated by the examples provided above. It is of particular value to human services professionals to appreciate the broader context of these observations as they relate to working towards a positive quality of life for persons with disabilities.
Barriers to Inclusion in Faith Communities
Although both empirical and anecdotal evidence point to the benefits of participation in a faith community, in the 2000 NOD/Harris Survey only 47% of people with disabilities reported that they attend worship services at least monthly, whereas 65% of people without disabilities go to services at least once a month (U.S. Newswire, 2001). The Harris survey (Hanson, 2004) revealed these figures to be slightly less discrepant (i.e., 49% vs. 57%). Reasons for this disparity are likely varied. However, there seems to be some evidence that the relatively fewer numbers of persons with disabilities participating in faith communities may be due, at least in part, to a lack of inclusiveness on the part of some of these communities. Landes (2001/2002) observed that “religious communities, not required to meet the standards of the ADA unless accepting federal monies, have often lagged behind in their intent and ability to include people with disabilities” (p. 1). There are also differences among faith communities regarding the definitions of “inclusive” or “accessible.” Definitions range from having a ramp and wheelchair accessible bathroom to including persons with disabilities in all aspects of the faith community. Landes (2001/2002) cited the example of a man who is the father of a son with a developmental disability and who does not consider his faith community sufficiently inclusive because, although the son is not discouraged from participating in church activities, he is also not encouraged to be an active participant in the full life of the church.
General Attitudinal Barriers in Faith Communities
What are the barriers to full inclusion in religious communities? Webb-Mitchell (1993) cited that sometimes “the fault lies with the family” (p. 4) because they choose not to challenge noninclusive attitudes in their own faith communities or to be advocates for their family member with a disability. As a director of religious life in a private facility for children with developmental and emotional problems, he reported on an instance of “society's intolerance for those who depart from the norm, [and such] intolerance manifested in some congregations and parishes” (p. 4). Such intolerance (e.g., segregation, absence of welcoming) keeps parents from bringing children with disabilities to church. He said that the families are “scared or embarrassed about what others will think of the child's appearance or behavior” (p. 4). In order to prevent ostracism and any awkwardness in the faith community, the family chooses to be a part of the congregation but without their child, or they decide to stop participating themselves.
Webb-Mitchell (1993) acknowledged that “many mainline denominations have eloquent position papers stating that all people should be welcomed” but further claimed that “individual congregations have been scandalously inhospitable to children with disabilities” (p. 5). Lacking confidence in their ability to care for families affected by a disability, faith community leaders commonly ask these families to find a different community. Regardless, he noted that these families are all the more needful of the care and support of faith communities in order to continue to care for their family member with a disability.
Swinton (2001) described an incident with Stephen, the young man previously mentioned, related to his participation in an inclusive community church:
I remember well the looks on the faces of the congregation when I took Stephen along to a Sunday morning service of worship in the church close to where he will soon be living [once we left the institution]. Several times Stephen shouted out “Jeeshuss” as he tried, in his own way, to participate in the service of worship. After this happened three or four times, a representative of the church asked us to either leave or, alternatively, for me to take Stephen through to the Sunday school where he would be a little less distracting for whose who wanted to “worship in peace.” Maybe I should have been pleased that the church was prepared to “take the risk” of placing Stephen with their children. We left. The joy of worshipful encounter and the freedom to express his experience of God in his own terms … was no longer available to him, at least within that congregation. (p. 35)
Perkins (2001/2002) suggested that many communities are simply uncertain and even fearful about including people with disabilities in their congregational life. Misunderstanding and fear based upon stereotypes and “the myth that only people who have formal training can form a relationship with a person with a disability” (p. 2) can give way to understanding and ease as well as increased friendship and respect if given proper education and support.
Sentiments similar to Perkins' (2001/2002) were noted by Thornburgh (cited in Matthewes-Green, 1995, p. 3), the director of the religion program of the National Organization on Disability and the stepmother of a boy with severe brain damage:
I don't think that exclusion occurs because people intend to be mean; I think they just don't know what to do. They think they'll say the wrong thing, touch the wrong part of the body. They have to be taught what to do. We need to learn about the person's condition and then practice basic friendship, talking about the weather or sports. You don't have to start on some profound level. (p. 35)
Riordan and Vasa (1991) concluded from their review of the literature related to the participation of persons with disabilities in religious organizations that clergy should be assisted in understanding the needs of persons with disabilities, including possible accommodations. Many clergy may either be unaware of the existence of persons with disabilities in their congregations or may not offer opportunities for them or their families to be active participants in the faith community. Furthermore, a sizable minority may tend not to recognize the need for, or may even be uncomfortable providing, personal counseling and other support for families with a person with a disability.
Another difficulty in regard to inclusion in faith communities lies with interpretations of various denominational guidelines concerning eligibility for certain religious rituals or observances (e.g., sacraments). A mother relates that
It was really important to me to have my children baptized, but for years the rejection of my church had been stopping me … (my one son) couldn't receive communion or be baptized because of his autism—because he can't understand. (McIntire, 2001/2002, p. 2)
Another boy, Alex, 9 years old and with autism and mental retardation, was denied Communion in his Catholic parish because his priest determined he did not have sufficient “use of reason” as required in order to adequately appreciate the religious significance of the Sacrament (Martin, 2002, p. 1). According to the U.S. Bishops' Guidelines for Celebration of the Sacraments With Persons With Disabilities (1995) as cited in Martin (2002):
The criterion for reception of Holy Communion is the same for persons with developmental and mental disabilities as for all persons, namely that the person should be able to distinguish the body of Christ from ordinary food even if this recognition is evidenced through manner, gesture, or reverential silence rather than verbally. (p. 1)
Although this document offers hopeful anecdotes, such as the reception of the Eucharist by children with severe retardation, the pastor at Alex's parish was not able to determine that he had adequate “use of reason” to receive the Sacrament. Martin further noted that “use of reason” is “measured through relatedness” (p. 2). Because Alex has autism, however, and lacked sufficient skills for informative social interactions to take place (e.g., lack of eye contact, appearing largely uninterested and unresponsive), Martin suggested that he may be thought, mistakenly, to lack adequate understanding.
Swinton (2001) talked about Stephen's experience of the Eucharist in his Anglican faith community:
Stephen loves to participate in the Eucharist. In sharing the bread and the wine, he experiences something of the love and acceptance of Christ mediated through the concreteness of the elements. It is true that he does not comprehend the theological significance of the elements, at least if we define comprehension in terms of the ability to grasp theological concepts. However, his experience of performing the Eucharist is filled with meaning by those around him who provide a context within which he feels secure, loved and a part of a worshipping community. (p. 35)
Swinton (2001) further suggested that the typical congregation would likely respond with multiple answers if asked to define the meaning of the Eucharist and, furthermore, that “many would not have a clue what its ‘true’ theological meaning is” (p. 56). He went on to say, “There is no good reason why we should deem it appropriate to ask questions of people [with mental retardation] that we would not ask of the majority of people who actively participate in our services of worship” (p. 56). Swinton implied the potential existence of a “double standard” operating with regard to determining the eligibility of persons with and those without retardation in terms of participation in this Sacrament.
With respect to potential barriers to the full participation of persons with cognitive disabilities in certain faith rituals, a difficulty in determining the “eligibility” of a person to participate is being able to correctly understand that person's actual perception or experience of the significance of the ritual. As in the case of a person with autism, for example, it may be nearly impossible to directly make that determination. It is possible that some theologians may also suggest that, at least in some cases, requiring actual understanding is not truly necessary and, in fact, this requirement may actually be at odds, or incompatible, with the very theological or faith premises of the particular community of faith (e.g., premises that suggest that God would not require it in such an instance).
Other barriers in faith communities cited by Eiesland (2002) include treating people with disabilities “as objects of pity and paternalism” (p. 2). She blamed this tendency in large part on what she termed a disabling theology that continues to be upheld by some who “continue to interpret Scripture and spin theologies that reinforce negative stereotypes, support social and environmental segregation, and mask the lived realities of people with disabilities” (p. 2). Examples of “disabling theology” that she believes still pervade much of ecclesiastical culture are rooted in Hebrew and Christian scriptures. For instance, she saw a common theme in Old Testament scripture of linking physical disability and impurity (i.e., the “holiness code” of the book of Leviticus) reflected in the 1986 declaration by the General Conference of the American Lutheran Church that people with “‘significant’ physical or mental disabilities would be barred from ordained ministry” (p. 2). Other troubling theologies that surface at times in Christian scripture (i.e., New Testament) and, likewise, Christian faith communities, are those that, according to Eiesland (2002), suggest a link between sin and disability, forgiveness and healing, and “virtuous suffering” in which “disability is seen as a temporary affliction that must be endured to gain heavenly rewards” (p. 3), for example, Paul's account of his “thorn in the flesh” in 2 Cor. 12:7–10; interpretations of Job and Lazarus in Luke 16:19–31.
Eiesland (2002) cited specific examples from her own childhood that appeared to reflect a disabling theology. She recalled being told that she was “special in God's eyes” and “that's why [she was] given [her] painful disability” (p. 4); or “Don't worry about your suffering now—in heaven you will be made whole” (p. 4). She then said,
This confused me. My disability had taught me who I am and who God is. What would it mean to be without this knowledge? Would I be absolutely unknown to myself in heaven, and perhaps even unknown to God? … I was assured that God gave me a disability to develop my character. But by age six or seven, I was convinced I had enough character to last a lifetime. My family frequented faith healers with me in tow. I was never healed. People asked me about my hidden sins, but they must have been so well-hidden that even I misplaced them. The theology that I heard was inadequate to my experience. (p. 4)
Finally, Eiesland (2002) suggested that although historically church-based charities have provided much-needed care and support, “this has often resulted in segregating people with disabilities … rather than restoring them to social and religious participation” (p. 4). As a solution to this problem, she advocated for the development of a “theology of disability, emerging from the lives and even the bodies of those with disabilities” (p. 4). As she noted:
We must come to see disability neither as a symptom of sin nor an opportunity for virtuous suffering or charitable action … the Christian community as a whole must open itself to the gifts of persons with disabilities, who, like other minority groups, call the church to repentance and transformation. (p. 4)
Swinton (2001) reflected similar notions when he discussed the need for
changes of practice [that] must not be seen as acts of charity … changes in practice of worship are not done simply to “accommodate people with [retardation].” We cannot truly be transformed if we assume that we are doing this for “them” … we can only understand the need for change when we realize that we are making it in order that the Body of Christ can be made whole. (p. 57)
In other words, he believed that “if we are truly one in Christ, this oneness must be fully reflected in our life and worship together” (p. 57). In a review of the qualitative literature regarding experiences of disability within African American churches, King (1998) revealed similar experiences. Although King suggested that attitudes giving rise to such experiences in the lives of some Black women with disabilities may in part be uniquely shaped and mediated by the Black church's history and development, nevertheless, the stories she cited seem strikingly similar. Common experiences given by the women whose stories King reviewed include people in their faith communities “feeling sorry” for them, taking especially overprotective and paternalistic stances, “shunning,” “spotlighting” or drawing special attention to them as symbols of inspiration because of their having a disability, and family members and friends seeking faith healing for them. One woman recounted an experience in which a stranger came to her suggesting that she see a certain evangelist for healing. When the woman replied that she did not believe she needed healing, the stranger said that her disability was due to her lack of faith in God and that it was the “devil's work.”
Barriers: Services and Supports
If human services agencies adopt an holistic view of persons with development disabilities, and embrace all contributions to quality of life for these individuals, there are specific barriers that must be addressed. These may include the absence of transportation systems that provide a means for persons with disabilities to participate in faith communities; scheduling challenges where agency personnel are not available to provide support, as needed, for weekend participation; and possible issues related to governmental personnel supporting involvement in specific faith communities. Further, the participation of human services personnel can help to create connections for persons to these communities and can make themselves available to members of the faith communities in terms of recommendations for successful inclusive practices. Although the field of mental retardation and developmental disabilities embraces a commitment to full societal inclusion, the supports available to achieve such inclusion may be inconsistent when it comes to participation in religious life.
Overcoming Barriers to Inclusion
Faith Communities Initiatives
What are some ways that communities of faith can overcome or avoid the barriers to inclusion? The discussion below provides several specific examples of initiatives that have been undertaken to promote inclusion in faith communities. Although these examples are specific to individual faith communities, they reflect key principles concerning inclusion, supports, and liturgical adaptations.
A comprehensive approach to overcoming barriers to inclusion for persons with disabilities is central to the supportive care initiative of the Mennonite Church (Preheim-Bartel & Neufeldt, 1986). Through this initiative, individual congregations are called upon to create supportive care groups that operate as a circle of support for the individuals with disabilities. The plan identifies the roles of various individuals, who create a natural network of supports. In addition to the persons with disabilities and family members, other roles called for in the program are individuals who serve as friends, taking an interest in the well-being of the person; an individual who monitors the work of the supportive care group; a program advocate who serves as a liaison between the person and community programs; a steward or trustee who assists with money management and related concerns; a spiritual mentor whose responsibility is to nurture spiritual growth as well as inclusion into the life of the congregation; a medical advocate; a parent partner to support the family; and a “worrier” who focuses on the whole spectrum of life concerns and looks for areas of additional need for support. The Mennonite Church's initiative, although now 20 years old, is far-sighted concerning ways in which an individual congregation can extend its work into numerous aspects of the quality of life of individuals with disabilities.
A second example comes from Hornstein (2001/2002), of the Council for Jews With Special Needs. Although her suggestions were made in the context of the Jewish faith community, other faith communities could adapt them to their own respective traditions. Hornstein focused on the context of the Bar and Bat Mitzvah, one of the best known Jewish life cycle events during which time a young adolescent is prepared to become a responsible adult in the eyes of the community. Until recently, however, she noted that “children with developmental disabilities were seldom included in the preparations for Bar or Bat Mitzvahs” (p. 1). Traditionally, preparations involve study in English and Hebrew, learning Jewish history, literature, commandments, holidays, and prayers. Different denominations vary in their expectations regarding the degree of the child's participation in the service. A child's involvement may include a range of requirements from chanting a portion of the Torah (i.e., the five books of Moses) and Haftorah (i.e., a selection from the prophets chanted in Hebrew) to leading the entire Sabbath service. A child with a developmental disability typically presents the faith community with challenges. Hornstein asserted, however, that “for every ‘challenge’ a child with a disability presents, there is a creative response” (p. 1). She offered the following examples:
Cannot read Hebrew: (a) Write the “script” in transliteration (phonetic English). (b) Prepare an audiotape with all the prayers in Hebrew and English, which the child can listen to for help in memorization.
Cannot verbalize: (a) Most congregations will accept sign language or augmentative communication devices to express prayers and the Torah portion of the service. (b) The child may be allowed to paint a picture to express interpretations of the Torah and share it with the congregation. (c) A parent may be allowed to chant (in Hebrew) in the child's honor while the child is in the parent's presence (e.g., a boy with profound multiple disabilities and no obvious communication skills sat on his father's lap and touched the wooden handles of the scroll).
Cannot stay in one place for long: (a) The rabbi may announce that it is the child's special day and, therefore, that the child may move and express him/herself in his/her own way. (b). The child may sit next to the rabbi or a close friend during the service and, thus, the child's obligation to stand for prayers may be excused.
In a similar vein, McIntire (2001/2002) shared one family's account of the Bar Mitzvah for a young man with Angelman syndrome.
On the bimah (stage), his parents, his brother, and his communication device all verbalized the words that he could not. … yet it was definitely Seth's presence that spoke more to the congregation than any human words possibly could. (p. 2)
His father said:
I know several members of our congregation who have witnessed Seth grow up were so proud to be there. Many people came up to us over the next few weeks telling us how moving they thought the whole affair was and how touched and privileged they were to have witnessed it. In addition, our family members saw that maybe he will be able to “amount to something” and I think it put Seth's whole life into a new perspective for them. (p. 2)
Role of Human Service Agencies
In order to support individuals with developmental disabilities in an holistic fashion, human service professionals can be important participants in the process of promoting inclusion in faith communities. Gaventa (2005) recently focused specifically on the question of how to assist faith communities in their efforts toward inclusion. As he noted, “There are lots of paths and ways to be tried; none guarantee that the door will open, but here are some ideas” (p. 14). Gaventa's recommendations, as follow, have applicability to both professionals and faith community members:
Many congregations and members of clergy have had limited experience working with people with developmental disabilities. Consequently, professionals need to make available to these congregations and these persons resources that enable them to move forward in a productive fashion. As Gaventa indicated, “A strategy that does not necessitate getting a special ed degree or starting a whole new program in ministry is most appreciated” (p. 14).
The focus should be on both the spiritual needs of, and the gifts of, individuals with disabilities and their families. Thus, the emphasis becomes not only how these communities can enable all people to have their spiritual needs met by participation, but also the parallel focus on what these individuals can contribute to the place of worship.
A key element is identifying models within the community (e.g., clergy, congregations) that have had success overcoming barriers to inclusion. By sharing this information, a sense of collegiality can lead to other places of worship implementing these successful initiatives.
Finally, it is worth noting that the process of overcoming barriers is consistent with Wolfensberger's (1998) emphasis on social role valorization, providing opportunities for individuals with disabilities to experience valued social roles. As faith communities, supported by human services professionals, move toward inclusion, the principles of social role valorization become clear in terms of (a) the role expectancies related to persons with developmental disabilities; (b) the environmental conditions that promote interaction and modify social judgments concerning the value of people; (c) the transformation of the unfortunate sense of social devaluation; and (d) the ways in which the social roles played by persons in faith communities transform their sense of self, their behavior, and, ultimately, their place in society.
Inclusive Faith Communities
Several examples illustrate the work of inclusive communities. The Hispanic Catholic community in Orange County, California, has developed a ministry to aid in removing barriers to participation of children with developmental disabilities (Brosseau, 2001/2002). Nine parishes provide religious education in Spanish to children with disabilities. The ministry's program includes teaching religious education teachers and aides concrete methods and behavioral strategies (persons with a professional background in special education serve as consultants) and asking parents whether the child has a copy of an Individual Education Plan (IEP) that the particular congregation can use in providing religious education tailored to each child's needs. One priest in particular also tries to raise the consciousness of his parishioners by making references in his sermons to persons with disabilities. Congregation members now inform him when someone has a special need. The priest said, “We have a responsibility to serve all members of our church, no matter what their language, economic or cultural background, because they are part of the family” (p. 2). He also observed that some Hispanic families try to hide their child with a disability:
Hispanic parents tend to have a sense of personal responsibility for whatever misfortune befalls anyone in the family. … They may believe that God is punishing them for their sins even though they are not sure of what they did to deserve it. … When you instruct the parents that this is not how we believe God acts, there is a tremendous sense of relief. (p. 2)
A second example of the successful inclusion of persons with developmental disabilities in religious communities is illustrated by the First Christian Church in Lynchburg, Virginia. The Disciples of Christ (Christian Church) is a denomination that has a strong commitment to inclusion in addition to its parallel tradition of significant local autonomy for individual churches. First Christian, and key members of the church, made a significant commitment to reaching out to persons who had mental retardation.
The origins of this effort go back to the late 1980s, when the minister of the church and an elder with a background in special education began a conversation concerning outreach to residents of a newly established group home. After asking for and receiving support from other leaders at First Christian, and after extending an invitation to the group home, arrangements were made for transportation each Sunday to and from the main worship service. At first, there was some discomfort evident among some long-time members of the congregation as the presence of the five to six people with mental retardation each Sunday definitely gave a different character to many of the established rituals and the environment of worship in the church.
After a while, however, even those who were skeptical of the initiative warmed to the presence of these new members. This change was particularly evident when the group home residents showed a hearty appetite and an obvious preference for certain pot luck supper items prepared by some of the most influential pillars of the church community. Watching the gusto for their fried chicken or apple pie won the hearts of some who had kept their distance. The inclusion initiative reached a new level when one of them was selected by the membership of the church to serve as a deacon. The tradition of the Disciples of Christ is to serve communion every Sunday. The bread and cup are served by the deacons, and they follow this with collecting offerings. It was with some excitement and anxiety that the congregation watched Keith, an individual with Down syndrome, serve communion and collect offerings his first Sunday as a deacon. Would he be able to follow the pattern of serving? Would he drop a serving plate? He served perfectly, with obvious care and pride. Some described his serving communion as the spiritual highpoint of the worship.
A few years later Keith and Sarah, another group home resident and First Christian Church member, were married in the sanctuary. Their wedding was planned, provided, and attended by most of the congregation. Many tears of joy were shed, and church members have continued to be supportive of Keith and Sarah, who now live in their own apartment.
The church was transformed and enriched socially and spiritually by the membership of the people with disabilities, who brought a new sense of mission and community to it. They are widely thought of as being a blessing to First Christian Church of Lynchburg, Virginia.
A third example of inclusion in faith-based communities is evident in the work of Vanier (1995) in Canada. Based on his interaction with two men who had disabilities and were living in an institution, Vanier invited them to help him develop a community. This approach gradually spread beyond the borders of Canada, and numerous L'Arche communities have been established around the world. Although a full discussion of the L'Arche movement is beyond our scope in this paper, the essence is that Vanier, and others, created ecumenical communities that were consistent with both their interpretation of the works of Jesus Christ and with the establishment of inclusive environments. As Vanier (1995) noted, the emphasis on inclusion was clearly a central focus:
We began to live together. I did the cooking, so we didn't eat very well! We did everything together. We cooked, we worked in the garden together, we fought together, we prayed together, we forgave each other. And so, a whole sort of journey began. I began by thinking that I could do good for them, but then as the days and then the months moved on I began to discover, little by little, what they were doing for me—transforming me, changing me. I thought I was going to teach them something and suddenly I was discovering that they were teaching me quite a bit. (p. 1)
In addition to these prior examples of congregations and spiritual communities, it is worth considering also the work of an agency that is committed to inclusiveness for individuals with developmental disabilities. The Jewish Foundation for Group Homes is a nonprofit organization with 18 residential homes and 44 apartments in suburban Washington, DC, that provides community residential services and support of independent living skills for adults with disabilities. As such, it illustrates the way in which a human services agency is committed successfully to an inclusive environment for persons with disabilities. A unique feature of the organization is that for those using its residential services (80% of whom are Jewish), it makes living in a “Jewish environment in a kosher home” possible (Goldberg, 2001/2002, p. 1). Although over 90% of the direct care staff are not Jewish, they are educated in various aspects of Jewish living, including the welcoming of Shabbat (Sabbath) each Friday evening with the lighting of candles and blessing of grape juice and hallah (i.e., braided bread). Some residents are able to lead the traditional blessing themselves, whereas others are aided by staff. Furthermore, residents are an active part of the larger Jewish community in the area (e.g., volunteering with staff at fundraisers to support the larger community, regular and full participation in synagogue services, and sharing Shabbat dinner with other congregation members).
Finally, it is important to note the work of the National Organization on Disability's (NOD) Religion and Disability Program (National, 2005). Under the leadership of Thornburgh, the NOD's program advocates for the removal of architectural, attitudinal, and communication barriers through their work with national faith groups, seminars, and local congregations. Further, the organization sponsors That All May Worship conferences that involve persons with disabilities joining with religious leaders to work toward improved physical and spiritual access.
In light of these accounts, as well as those alluded to earlier, it is clear that a central role of faith communities for persons with disabilities is to affirm pastoral theologies that do not imply negative judgments regarding the existence of a disability, provide a basis for the acceptance and participation of all persons, and reach out to welcome and include persons with disabilities.
Special Considerations for Adults With Disabilities
The above discussion of means to foster greater inclusion in faith communities has so far focused largely on children and adolescents with disabilities and/or their parents. McNair and Smith (2000), however, stressed “the importance of religious organizations, a natural support in our community, in the lives of adults with developmental disabilities” (p. 224). Amado and Simon (2001/2002) shared the important point that although persons with disabilities may experience inclusion in school and in religious programs when they are children, as adults they “often become more isolated…. There is no adult social structure comparable to school in which everyone of the same age participates” (p. 3).
According to McNair and Smith (2000), providing opportunities for adults to fully participate in their faith communities should include offering membership in regular adult committees and groups (e.g., men's groups, women's groups, choir, ushers) because there are “opportunities for people to build deeper and more personal connections with one another” (p. 3). Further, faith community members can become friends with persons who have developmental and other disabilities, both within the context of the faith community and the community-at-large.
On a broader note, Riordan and Vasa (1991) perceived “the important role of religious organizations in meeting the life-span needs of individuals who have disabilities” (p. 152). These persons as well as their families can benefit greatly from inclusive and supportive faith communities throughout their lives. At the same time, as Matthewes-Green (1995) noted, “people with disabilities have gifts to bring to their [faith communities] … and [they] elicit gifts in other people” (p. 3). Thus, she concluded that “any congregation excluding people with disabilities is weakened” (p. 3).
Discussion and Conclusion
In 1959, the renowned anthropologist Margaret Mead spoke to a conference sponsored by the American Association on Mental Deficiency (now the AAMR). In her remarks, she referred to a statement made by a group of Catholic nuns who worked with children who had mental retardation. Mead quoted them as saying that they were attempting to make it possible for the children they cared for to make a contribution in time as well as in eternity.
Later in her speech, Mead returned to the example of the work of the Catholic Church with people who had disabilities. She gave the example of a little girl with Down syndrome who had been tested, diagnosed, and given every opportunity for the best skill training that was available. In her early teens, however, when this young woman was given religious instruction and preparation for communion, a dramatic and positive change took place in the girl's life. She said of her at this time:
She became a human being in a way that she had not been one before…. I think that what happened on the secular side [as well as the spiritual] with this little girl was that for the first time she met a situation where people were willing to teach her the whole instead of saying, “you are defective and you can only learn a part. (p. 260)
Mead (1959) concluded her address by elaborating on the concept of wholeness. She emphasized that genuine opportunities are necessary to create a culture in which all individuals have an opportunity to fully participate and be seen as whole people. Mead's words may be most applicable when the role of faith communities for people with disabilities is carefully considered and constructed. Perhaps as nowhere else, faith communities may provide a sense of wholeness for all members of the community that might otherwise be lacking.
Amado and Simon (2001/2002) more recently expounded on a holistic perspective regarding the potential for inclusive faith communities when they stated:
Congregations play a key role in promoting inclusive communities. Supporting inclusion through faith communities reinforces wholeness on the individual and societal levels. An individual's wholeness depends on addressing all their needs, including spiritual needs. A community's wholeness depends on the valuing, participating, and belonging of all its members. (p. 3)
There are a number of organizations in the United States that seek to promote and support inclusive faith communities on behalf of people with disabilities (e.g., National Organization on Disability's Religion and Disability Program). Further, many members of faith communities who themselves are in some way directly affected by a disability also advocate for inclusiveness. Such advocates typically stress that the ideal faith community would not wait for persons with disabilities to join the community and request full inclusion before affirming their right to be included. Similarly, the ideal faith community would not wait to grow in awareness of the common needs and gifts that all persons with or without disabilities have. It would instead make reaching out to persons with disabilities and other historically excluded people a priority (see McNamara, 2004, and General Board, 2005, for further examples). It would proactively affirm in its words and actions the rightful place in the faith community for people with disabilities. Further, it would proactively affirm their unique experiences as human beings. As faith-based communities strive to increase their commitment to inclusion, professionals in the field can have a significant impact on the success of these efforts.
As Gaventa (2005) indicated,
the next wave of congregational inclusion will come, not in sweeping sudden change, but as more and more individuals and families find the courage and forgiveness to ask again and come with belief that they are already a part of God's people. … [Thus it is important to communicate to faith communities to] keep sharing the stories about what a difference spiritual inclusion can and is making in the lives of many. (pp. 14, 23)
Authors: Jeannine Vogel, MEd, Special Education Teacher, Bedford County (VA) Schools, 220 Belvedere St, Apt. C, Lynchburg VA 24503. Edward A. Polloway, EdD (email@example.com), Professor of Special Education, Office of Graduate Studies and Community Advancement, Lynchburg College, Lynchburg, VA 24501. J. David Smith, EdD, Professor of Special Education, School of Education, University of North Carolina at Greensboro, Greensboro, NC 27402