The role of religion in enhancing the quality of life of many people both with and without disabilities has been examined from numerous viewpoints in the past (e.g., Bennett, Deluca, & Allen, 1995; Corrigan, McCorkle, Schell, & Kidder, 2003; Ferriss, 2002; Lewis, Maltby, & Day, 2005; Poston & Turnbull, 2004; Skinner, Correa, Skinner, & Bailey, 2001). Regular involvement in organized religious activities such as prayer has been positively correlated with numerous positive outcomes, including physical health (Idler & Stanislav, 1997; Selway & Ashman, 1998), life expectancy (Schnall, 2010), and happiness (Lewis, 2002; Lewis, Maltby, & Day, 2005; Siegel & Anderman, 2001). In addition, involvement in religious practice often provides all people an opportunity to become part of a community that can serve as a social base and provide outlets for inclusion and interaction with like-minded people. Particularly in the United States, many national disability organizations have branches or committees focusing on spiritual life (e.g., the National Organization on Disability), and many religious groups have programs and affiliated organizations (such as the Jewish Orthodox Union's National Jewish Council for Disabilities), with the purpose of meeting the needs of people with disabilities. Within the Modern Orthodox Jewish community, many summer camps have inclusion programs, many Yeshiva Day schools have resources and supports for various degrees of specialized needs, and many social and recreational programs exist aimed at bringing children and adults with and without disabilities together. Indeed, in a study conducted in the United Kingdom focused on religious expression among adults with intellectual disability, Turner, Hatton, Shah, Stansfield, and Rahim (2004) included the hopeful statement (although this statement is hopeful from our perspective, but probably not from the authors') that,
whilst most faith agencies seemed to accept the presence of people with intellectual disability, there were few examples of faith agencies actively welcoming people with intellectual disabilities or adapting their practices to be more inclusive, unlike some faith agencies in the USA. (Turner et al., 2004, p. 169, emphasis added)
Despite this recognition of value and commitment to address this need, the practicalities of including people with intellectual disability in religious and spiritual life often pose challenges that families and agencies find difficult to overcome. This is particularly true regarding individuals with profound intellectual and multiple disabilities. Here we attempt to understand and address these spiritual and religious challenges from a Jewish perspective.
Spirituality and Religion
Although ideally connected, spirituality and religion are not necessarily identical. The American Heritage Dictionary (1992) defines spirituality as “The state, quality, manner, or fact of being spiritual.” Spirituality is a concept, a feeling, a state of existence. It is internal. Spirituality concerns ideas and beliefs and concepts that give meaning and direction to a person's life (Turner, Hatton, Shah, Stansfield, & Rahim, 2004) and help them cope with the challenges and understand the celebrations that living entails. Religion, on the other hand, is defined as “a personal or institutionalized system grounded in … belief and worship.” In other words, religions are more specific versions of spiritual expression (Turner et al., 2004). Religions are belief systems (not merely beliefs) that come along with their own specific rituals, symbols, and communities. Now, of course, a person can be both spiritual and religious, but a person can also be spiritual without necessarily adhering to a specific religion. Similarly, a person may very much identify with, and feel very attached towards, and adhere very strongly to a specific religion without necessarily grasping wholeheartedly the spiritual nature of the religion. This may be due to a person connecting to a particular religion based on cultural experiences; family upbringing; social or educational history; or, perhaps, an intellectual disability itself precluding a person from grasping the more abstract spiritual components of a given religion's structure.
In discussing how to support spirituality and religion in the lives of people with intellectual disability, there are really two ways to view the topic. The first is internally, with regard to the person's spiritual beliefs and understanding. In other words, we can discuss a person's own spiritual growth and the use of spirituality to help add meaning to his or her life. The second is externally, with regard to how to support a person's religious lifestyle and community to enhance quality of life through what are, in fact, essentially nonreligious (or metareligious) ideals, such as normalization, socialization, and community inclusion.
Spirituality in the Lives of People With Intellectual Disability
A review of the literature of religion in the lives of people with intellectual disability falls generally into two categories: (a) the use of religion and spirituality in relation to stress, coping, and adaptation of parents and families of people with intellectual disability (Skinner, Correa, Skinner, & Bailey, 2001) and (b) the use of religion (but not necessarily spirituality) in the communal lives of people with intellectual disability (that is, how to include people with specialized needs in, for example, congregations, life rituals, rites of passage) (Vogel & Reiter, 2004). There is very little published research, however, on the spiritual life of people with intellectual disability themselves. The reason may be that spirituality, as opposed to religious practice, is, for the most part, a very abstract enterprise. In Judaism, for example, ideas like the encorporality of God (the idea that God has no body), or omnipresence (that God is everywhere), or eternity (that God has always been and will always be) are difficult concepts for many people with and without intellectual disability to grasp. The faith that these concepts are true even without fully understanding them, however, is something that can be accepted by many people with intellectual disability and can serve the same purposes that it does for those without intellectual disability, namely, to comfort, to cope, and to provide explanation, purpose, and contentment. Indeed, I believe that we often expect people with intellectual disability to achieve more, to understand more, or to take on more responsibilities than those without intellectual disability; we often confuse the term normalization for perfection. In other words, I have heard some people dissuade individuals with intellectual disability from getting too involved in religious communities or practice, or making decisions based on religious statute, on the grounds that, because of his or her disability, an individual might not be able to fully comprehend the underlying belief system of the religion and, therefore, take on responsibilities or restrictions that they might not have otherwise agreed to do. Put another way, some people may view religion negatively as an informed consent problem. However, in a world where so much is not understood, it is often comforting to accept a belief that not understanding does not mean failing. So, within a religious framework, the response “because that is how God wanted you to be,” to the question of “Why am I different?” is just as valid for a person with intellectual disability as it is for their family. The response “God will decide” in response to “When will I have a child?” may be just as comforting to a childless married couple with intellectual disability as it is for a childless married couple without disabilities. Furthermore, the response “pray” to the question of, “What can I do to end the war?” or “How can I help my sick roommate?” may be just as rewarding for a citizen or a roommate with Down syndrome as it is for one without Down syndrome (at the same time, I will repeat the frequently quoted adage, “You can't pray to God to win the lottery and not buy a ticket”); so, perhaps, the advice given should be “Send a get well card, make sure he takes his medicine, and pray.”
It is interesting that a recent scholar, Rabbi Shlomo Zalman Auerbach, stated that girls over the age of 12 and boys over the age of 13 who have a mental age of at least 6 years old are obligated to fulfill Jewish law. In other words, the religious understanding of a 6-year-old (that God gave the Jews the Torah, that we follow the commandments of the Torah, and that the Torah forbids certain acts) is enough to make one a full intellectual member of the Jewish fold (Lifshitz & Glaubman, 2002). It stands to reason, then, that the same level of spiritual guidance can be used to enhance (or, perhaps, in Judaism, must be used to enhance) the quality of life of people with intellectual disability in a meaningful way.
Religion in the Lives of People With Intellectual Disability
As noted above, religion is the concretization of spiritual beliefs. Religions, for the most part, come with their own specific rituals, symbols, and communities, all of which can be utilized to enhance the lives of people with and without intellectual disability. Because religious activities, unlike spiritual beliefs, can be viewed in an almost programmatic manner, I now focus on how different aspects of religious life and ritual can help enhance individuals' quality of life at a variety of levels, focusing on three broad areas: ritual practice, community inclusion, and community growth, with specific examples from the Jewish religion.
Engaging in rituals provides many opportunities to enhance an individual's quality of life even outside the context of the overall community. Some rituals, such as holiday celebrations, provide variety to a person's daily routine, whereas others, such as daily prayer, might provide a needed structure to a daily schedule. Rituals provide normalization opportunities (I get occupational therapy, I go to a special school, but everyone goes to synagogue!) as well as what I call self-esteem moments: those moments when a person can say, “I need to do this because I am important enough to need to do this.”
Particularly when working with individuals who have profound intellectual and multiple disabilities, staff and family members engaging in religious ritual can provide a variety of sensory experiences within a culturally appropriate, naturalistic setting. For example, in Judaism, the conclusion of the Sabbath is observed with the Havdala (Separation) ceremony, marking the separation of the day of rest from the ordinary work days. This ceremony consists of blessings over a cup of wine or grape juice, a multiwicked candle, and spices. This is an example of a ritual in which a person at any level of ability can take part. Individuals with profound physical and sensory impairments often have aromatherapy as part of their sensory diet; placing aromatherapy within the context of the Havdala ceremony adds both a typical sensory experience into the day of these individuals and provides an opportunity for normalization and inclusion within the religious community that is both enjoyable and meaningful to the individual participant and valued by the community. Holiday foods, experiential rituals, and taking part in communal celebrations all have significant sensory components that can enhance the involvement of people at every level of ability.
Similarly, one of the ways Jews observe the holiday of Sukkot is by eating in a temporary dwelling built specifically for the holiday called a sukkah (a booth symbolizing the similar temporary structures built by the ancient Jews during their 40 years in the desert following their exodus from Egypt as described in the bible and emphasizing one's reliance on God for security and comfort). Many communities (especially with people who live in apartments) have communal sukkahs and sometimes even communal meals. A major component of this holiday is the mandate to eat one's meals in the sukkah. According to Jewish law, tube feeding a person in a sukkah is completely unnecessary because tube feeding is not considered to be eating from the standpoint of Jewish law; therefore, one who is exclusively tube fed is not required to fulfill the obligation of eating in a sukkah. However, including someone with significant disabilities in the ritual of eating in a sukkah even via a feeding tube (despite the fact that it is technically unnecessary according to Jewish law) does promote normalization and inclusion; the building of relationships; and, hopefully, changes the mindset of the people who observe this act and who may not have considered people with specialized needs as having a place within the religious community.
Another wonderful way to promote inclusion and acceptance is through synagogue involvement. Attending synagogue, volunteering when needed for projects (e.g., helping with synagogue mailings, filling food baskets, serving as greeters or ushers, folding up talesim [prayer shawls] as well as engaging in meaningful ritual, such as opening the ark during services, or dressing the Torah, or returning prayer books to the shelves are just a few examples of how to promote this involvement. These methods, again, help to build community relationships, enhance self-esteem, and promote normalization in a value added way for the community.
Although engagement in religious ritual can help build relationships, some rules of thumb specific to synagogue involvement must be kept in mind for these relationships to remain positive. First, it is important, especially if a group of individuals with specialized needs attends the same synagogue, to become a dues paying member of the synagogue. Paying membership dues, donating to annual appeals, and co-sponsoring synagogue events provide individuals with specialized needs with the full array of rights and responsibilities that are granted to, and incumbent upon, members of a community. In other words, if you want people to treat you as an equal member of the community, you have to actually be an equal member of the community. An added benefit to paying membership is that it usually puts a person on the synagogue's mailing list, which often helps boost the self-esteem of the person receiving the mailings as well as keeping that individual informed of the goings-on of the community. Second, one must be careful to avoid oversaturation. If a synagogue already has two group homes praying there, you may not want to bring in a third. Finally, individuals with specialized needs and their advocates must be involved in age-appropriate situations, not only because it is the right thing to do, but because age appropriateness promotes inclusiveness and acceptance. If a 20-year-old man with Down syndrome, for example, is taking away the job, and the “spotlight,” that a synagogue normally reserves for children, it could leave a bitter taste in many people's mouths, for a variety of reasons. When seeking ways to promote inclusion in a faith-based community, those working with and caring for people with specialized needs must always ask ourselves not only how my child, or service participant, or friend can be included, but also how he or she can add to other people's religious experiences.
When a Jewish boy turns 13 years old or a Jewish girl turns 12, they reach the age at which they become obligated to follow Jewish law. Customs differ regarding how this milestone is commemorated, but it is usually marked by some sort of a celebration, referred to as a bar mitzvah for boys or a bat mitzvah for girls. This reality leads to an interesting question: How, if at all, should one honor a child reaching the age of gil mitzvoth (acceptance of the commandments) if, in actuality, they are not becoming obligated to follow Jewish law due to their intellectual disability? Do their parents even want to be reminded of their child's differences at this particular stage in their lives?
My experience has been that, with few exceptions, when presented in a sensitive and sincere manner, most parents appreciate seeing that others working with their son or daughter believe that their child's growth, however atypical, is worth celebrating. Indeed, I have celebrated numerous bar and bat mitzvoth for young men and women, even though it was clear to everyone involved that these children were not becoming obligated to follow Jewish law. These occasions have been marked in different ways for different people. For most, the occasion was marked by a formal affair, with staff and service participants getting dressed up in formal attire, invitations being sent to agency administration and day programs, elegant meals cooked or catered, live music, and speeches by family, staff, and friends. Whereas, for typically developing adolescents, the bar mitzvah speeches usually focus on the person taking on the responsibility of being a Jewish adult, many families in the Jewish community have used the phrase “celebrating 13 years of growth” (a phrase coined by a parent in our community) to describe the purpose of such an elaborate affair.
One particularly special type of affair is worth describing. About 6 months prior to the 13th birthday of a boy diagnosed with Canavan disease living in a group home, agency staff sent an e-mail to a variety of Jewish day schools, synagogues, and list serves, as well as to friends and family, explaining that a boy with Canavan disease would soon be reaching the age of his bar mitzvah. The e-mail included a brief description of Canavan disease (a spongy deterioration of the brain) and contained the following plan: “In the same way that this boy cannot feed himself, so we feed him; and he cannot dress himself, so we dress him; this boy cannot prepare for his bar mitzvah, so we want people to prepare for him.” To do so, people were asked to learn the weekly Torah portion that was to be read in the synagogue on the Sabbath that coincided with his bar mitzvah, the one he would be giving a speech about if he could speak, and asked them to write a homily on the portion and send it to us for compilation into a book. Over the years, I have taken part in three such affairs, for three children with Canavan disease, and each time the community responded with over a hundred homilies written by boys and girls and men and women of all ages, from all over the country, from Europe, and from Israel. One child's family, when first presented with this idea, noted that they really did not know what they could do to observe their son's bar mitzvah, and this program gave them the opportunity to mark the occasion in a meaningful way and say to their family members, “This is what we are doing, can you take part?” In doing so, these children went from being people in need of care to inspiring personalities. The community was enriched by these boys' achievements, however passive, and joined in the celebration using a language and a structure that focused on commonalities and strengths instead of differences and disability.
In an interesting article, Vogel and Reiter (2004) specifically discussed the role of the bar or bat mitzvah ceremony for people with intellectual disability. They noted that celebrating a bar or bat mitzvah had significance on six dimensions for families of children with intellectual impairment: bar or bat mitzvahs were viewed as transitions (a rite of passage), normative experiences (we celebrate like everyone else), religious experiences (i.e., involvement in the spiritual and ritual aspects of being called up to the Torah, leading a prayer), inclusive experiences (family members were invited, a life experience was shared with others), experiences leading to an enhancement of self-image (the adolescents saw it as an opportunity to show they are capable and feel mature), and as peak life experiences (providing an opportunity to celebrate the child, providing the child with a pleasant memory).
I believe that these six dimensions form a pretty good guide to the questions one should ask while searching for ways to use religion and spirituality to enhance the quality of life of people with intellectual disability. Are these experiences transitional (do they change the view of the person, either his or her own view or how the person is viewed by others)? Are they normative (both for the service participant and for how others view the service participant)? Are they religious in nature (opening up the doors of the community by using a shared vocabulary and belief system)? Are they inclusive (as opposed to parallel)? Do they enhance self-image (of the person as a spiritual entity or member of a group)? Are they peak experiences (do they provide an opportunity to celebrate the person as a person and provide pleasant memories)? Not every religious or spiritual experience is going to fall on every one of these dimensions, but the idea that these dimensions serve as a roadmap to guide us on our journey is, I believe, a good one. It is hoped that some of the thoughts and ideas presented in this article will stimulate creativity and future research both within and outside the Jewish community regarding the role of spirituality and religion in the lives of people with intellectual disability. As Blatt (1985) wrote, “There are many ways to examine the world. There is more than one way to solve a problem.”
The author thanks Jeanne Warman, Lida Merrill, and Yehoshua Halle for their assistance in developing this article.
Stephen Glicksman, PhD (e-mail: email@example.com), Developmental Psychologist, Women's League Community Residences, 1556 38th St., Brooklyn, NY 11218.