In one of the formative experiences of my life, I was assigned as a young chaplain in training to a part time role at the Center for Disorders of Development and Learning in Chapel Hill, North Carolina. The center provided training for about 13 disciplines of health care professionals, but the chaplaincy role there was brand new. Families came for a two-or three-day interdisciplinary evaluation process for their child. As the newcomer and as a young minister, I felt powerless. In those days before spiritual assessments, there was no recognized place at the interdisciplinary table for pastoral care. I had never had any training in seminary to my prospective role as minister with people with disabilities and their families.
So what to do? I started sitting in the observation rooms with the parents, talking with them as we both watched some of the evaluations behind two-way mirrors. I began to learn then what I have experienced time and time again in the decades since: When you ask families an open ended question like, ‘Tell me your church story’, or some other version about the role of faith in their journey as parents, you rarely get a lukewarm answer. If trust has begun to form, parents will talk about how important their faith or faith community has been (sometimes the response is ‘our faith has been crucial, and our faith community has been much of a help’) or, on the other hand, how a painful or wounding experience with an insensitive pastor or uncaring congregation has continued to haunt them and their own faith journeys.
In one of those early conversations, I heard a story that would be repeated far too often in other versions and variations. A family told me that their daughter had grown up in the church, and did fine in early years in Sunday School, but then, as the intellectual gap became more apparent, they were asked to hold her back in Sunday School while other kids advanced. They finally had to send her away to a residential school, and noted that the pastor and church never asked about her in the same way that people enquired about young people from the congregation who had gone away to college. She had come home for a visit, gone to church with the family, and the pastor did not want to shake her hand in the receiving line at the end of the service.
So I called this pastor and asked if I could visit him, thinking I would set him straight. I walked into his office, saw he had just as much, if not more, training than I had, and finally bumbled out the question, ‘Can you tell me about the family from your perspective?’
He noted that he had been in their home when their daughter was present, and knew that she had a disability, but the parents had never said, ‘Pastor, we would like to talk with you about her.’ Nor had he asked because ‘they seemed like proud, independent parents to me, taking care of things themselves.’ What came from that was an image that has never left me—one of a family waiting for the pastor to make the first move, and of a pastor waiting for a family to ask.
A Catholic mother later taught me another pastoral lesson. Just as the birth of a child with a disability into a family impacts the whole family system, so does a pastoral intervention, for good or for ill. This mother came to a meeting for Catholic families when I was beginning a new pastoral program at a residential facility. Fifteen years earlier, her son had been refused the rite of confirmation. That happened some months later, with the help of a very pastoral bishop and that inclusive act transformed the family. Tillie, the mother, later told a visiting sister: ‘When the church rejected my child, they rejected me. And when they accepted my child, they accepted me.’ As I have listened to families and clergy, four key pastoral roles have emerged. The first, as indicated, is presence. Be there. When a child is diagnosed, or when there are other critical transitional times in the life of a family with a child with a disability, be there. One does not need to know exactly what to do, if a pastor is willing to ask the open-ended questions, ‘Tell me about what’s going on,’ and ‘What can I (we) do to help?’ Related to that, of course, is to welcome their presence into the faith community.
The second role is the traditional one of counsellor, of listening, helping families as they work to discover their own sense of meaning and purpose in their role as parents of a child with a disability. That can involve grief, the loss of expectations, the search for new sources of hope, and the process of accepting and celebrating a child for who he or she is. Families often struggle with the question of ‘Why? Why us? Why our child?’ That struggle is often one that involves questions of faith, responsibility, and hope. ‘What did we do? What do we do now?’ A number of parents have written about this journey (e.g. Kathy Bolduc, a parent in Ohio, in His Name is Joel! Searching for God in a Son’s Disability).
A primary pastoral role in journeying with families in this search for meaning is, again, to listen, and to avoid quick answers or misuse of theological aphorisms. I still hear parents tell stories of the impact of a pastor who asks, ‘What did you do, that God sent you this child?’ or whose statements imply that ‘If their faith were stronger, their child could be cured.’ Much more subtle, but still distancing, are responses that assume God has ‘blessed them with this special child’ (which does not hear the struggle) or that ‘the parents are heroic for their care’ (which does not hear or see the ways that parents and others see the gifts of the child). The pastoral call is always to listen, be supportive, and help families feel the care and support of clergy and congregation.
The third pastoral role is advocacy, or in the Biblical image, to be a shepherd. A shepherd/advocate is one who helps guide others through a wilderness and the valleys of the shadows, one who helps fight off attackers and find a trail (think of helping to cut red tape, and get schools or agencies to move when they are not responding), one who goes out and finds the one lost sheep to bring back to the fold, and one who lays out a feast of welcome. My favorite story of about this role is about a mother who responded to my request, at the end of a talk at a Down Syndrome conference, for people to share their church stories. She got up and said, ‘We took our pastor with us to our IEP’ (Individual Education Plan meeting). It was wonderful. We got everything we wanted. They thought he was our lawyer.’
Think what might happen if clergy knew enough to ask about attending—or if families felt comfortable in asking them—the various planning meetings for children and/or adults, or were included in person-centred planning activities, and more. It could be a key way of bridging the worlds of caregiving between congregation and public systems, as pastors and/or church members say, ‘We want to know what you are doing in your school, so we can support that’, or, ‘here is what we are trying to do.’
The role of pastor as advocate may have to be within the church community as well as in the community. Pastors may need to help their congregation in building inclusive and welcoming ministries for people with disabilities and their families, or, certainly, to bless the efforts that others in the congregation may want to make. Preaching about the importance of welcome and inclusion is one way of helping a whole congregation to see inclusive ministries and spiritual supports as part of their call and mission.
In the process of listening to families with children with autism in the last few years (through an Autism and Faith Task Force in New Jersey), we heard all kinds of stories, many of which are included in a booklet, Autism and Faith: A Journey into Community. One illustrates this ‘advocacy within’ perfectly: When my son was 18 months old, before I thought of having him evaluated, I was sitting in the service and an older woman asked me to remove my disruptive toddler. She had this tone, that I soon become immune to, of Pastoral Care condemnation of my parenting. I took my children (18 months and 2½ years old) to the nursery and cried my eyes out. I was crying when a different woman from my congregation walked in and gave me some comfort. A few weeks later, I tried to take my children to the service again, but my son was just as disruptive. When I stood up to leave, the pastor stopped me. In the middle of her sermon she told me to sit down. She told the rest of the congregation that my son was a member of our church and that it was all of our responsibility to raise and teach him the ways of God. The tears I am shedding as I write this story are ones of gratitude in contrast to those I shed 7 years ago in the nursery of my church.
That kind of advocacy leads to the fourth role, that of helping build a supportive community around a person with a disability and their family. That supportive community can take the form of inclusive religious education, respite care, finding volunteers to build a ramp, fundraising for specialized equipment, and simply encouraging friendships and connections. Many families simply say, ‘Don’t do anything special for us. Just include us in the life of the congregation.’ Being included may take some special supports, but they might wish to participate for the same reasons any other family does in being part of a community of worship, music, prayer, learning, social supports, and service to others. When service systems ignore the faith community as a primary option in ‘natural or generic supports’, they are missing what can be a key resource. The language and world of service systems is often as strange to clergy as the world of faith and religion is to service providers. Taking the initiative to collaborate, and build partnerships of support around any given family, is a pastoral role that combines advocacy and support, but also invites initiatives from the system toward to the pastor and congregation. Erik Carter’s new book, Including People with Disabilities in Faith Communities: A Guide for Clergy, Service Providers and Families (Brookes Publishing, 2007), is a wonderful resource for this. Effective pastoral care is not a one-shot event. It is a relationship built over time. It takes time to adjust to a child with a disability. It takes time to reestablish a pastoral relationship with a family if they have felt neglected or rejected by their clergy or congregation in the past. It takes time for pastors and congregations to learn if they have not had experience in this area of ministry. Sometimes, as in the opening story, the problem is that no one asks. Pastors and congregations often go from doing nothing, or seeing disability as outside of their area of ability or concern, to ‘special ministries’ to ‘special people’, to hearing individuals and families say, ‘Don’t do anything special. Just include us.’ When pastor and congregation make efforts at inclusion, the growth continues, and they all come to realize the ways in which people with disabilities and their families are bringing gifts to their life as clergy and congregation. There are profound spiritual and theological questions to be explored in this journey, and opportunities for everyone to learn. A new crop of books and resources by family members who are theologians capture some of that learning.
Using the lens of time, what might pastoral care look like over the life span of an individual with a disability and his/her family?
The pastor would have been called, or would have initiated presence, when the child was born, or later when the parent’s worries about their child led to a diagnosis. He or she would be able to listen, to bring the care and support of the congregation, help connect the family with family support organizations, and provide spiritual support as a family struggles with the questions raised by this unexpected event in their lives.
The pastor would work with the religious education program to ensure that the child was included in religious education and in other youth activities. He/she would work with the teachers to help other kids and teachers figure out ways they could all be supportive. In fact, they have organized a congregational circle of support with other kids and adults to provide many kinds of support, including respite care.
The pastor would work with the the appropriate rites of utilize these documentary in the Praying with Lior,
As a child moves into young adulthood, the congregation could be a resource for helping to find appropriate employment and supportive employment options. Inside the faith community, the young adult would have discovered ways to use his or her gifts in the service of the faith community, such as being an usher, a teacher’s aide, or any of the hundreds of potential volunteer roles in a congregational setting, opportunities to express and live out his or her own faith.
As a young adult gets older the pastor and congregation would be part of the journey of finding residential options, and the answer to the question of who cares over the long haul? When there have been losses in the family, the pastor ensures that the person with a disability is included in the opportunities for shared grief and mourning.
It is important for any family and clergyperson to realize that there are resources, organizations and networks to assist clergy, families, service providers and advocates who wish to address the spiritual needs and gifts of children and adults with disabilities. (See, for example, the resource guide, Dimensions of Faith, on the website of the place where I work, The Boggs Center, http://rwjms.umdnj.edu/boggscenter/products. But even more important is the recognition, ultimately, that this area of pastoral care and congregational care is not different in kind from any other. The spiritual questions raised, the support offered over time through an inclusive faith community, and the lessons learned are all ultimately ones that everyone faces, ones about what it means to be a person, to be a person of faith, our understanding of God, and our understanding and action as a community of the people of God who all face issues of vulnerability and limitation as well as the call to use our gifts in service to God and one another.