Impact Feature Issue on Faith Communities and Persons with Developmental Disabilities
Respecting the Urge to Join
I once read of a medical theory that suggests that cell fusion – the linking together of two independent cells – may be part of our original code, the map which allowed human beings to evolve from our original primordial existence. If that is true, the theory suggests, such a union may account for our tendency to want to form attachments to each other even now. We all want to belong to something. That urge to join together, the desire to belong to a larger group so that we’re not alone, is very basic.
Yet, it’s also true that once we get together it seems sometimes that there is an equally basic urge to want to keep out others who are different. In our worshiping communities, we have developed this “keeping out” mode into an art form. We all want to belong to something, but we each want something different to belong to and we want to decide who else is allowed to belong.
The Pull Toward Belonging
Religious communities have historically and continually denied people with disabilities access to buildings, to worship, to fellowship, to leadership, to any kind of participation, because they are “different.” It has usually been assumed that people with disabilities need to be cared for rather than be included as those who offer care. Yet despite this historic marginalization of people with disabilities, there is still something at the center of our human existence that pulls us toward wanting to belong. And so I have heard adult friends with developmental disabilities express their very personal urge to join up together. “I want to belong to a place where people say hello when I walk in,” one person told me. Another was a little more specific: “I just want to go to a church where I’m allowed to sing in the choir.” Those are pretty basic requests and the message can’t be any clearer. These are people that have felt excluded for most of their lives. They are feeling like they are on the outside of something which I just don’t understand as having an inside and outside. Maybe society in general feels like it has some right to exclude people who are different from the majority, but I just can’t see how a community of faith possibly can.
This urge to join up together is so basic to our human design that we just want to belong. And why not? It is in our faith communities that we find others who are struggling with the same basic life issues that we are. It is in these communities that we can – if they are what they claim to be – openly shed tears and laugh out loud, pray with those who know our pain, and hold hands with others who can bring us closer to wholeness. And when it comes down to it, the foundation of any community of faith is rooted in an insistence on inclusion for the purpose of wholeness and community and healing and realization of God’s presence. There is something in our human understanding of the divine that urges us to join together to share our faith questions.
"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...blah, blah, blah, blah.” Maria is a young mother of two boys whose disability resulted from damage caused by a cerebral brain hemorrhage two years ago. “I can feel, but not do,” she says of her physical disability. Her younger son, Nicholas, has autism and though she has often met with resistance, she has advocated for his baptism and full inclusion in the church even before the onset of her own disability.
“I was raised, not as an atheist, but to disregard God,” she says, “to believe that God is there but, ‘Oh well, what’s he gonna do for me?’ It’s hard to be raised without faith, to not have a foundation. I was in a free-fall my whole life. My wheelchair is now a symbol of grounding – a foundation. The chair is a prison in some ways, but it is also a support. Without it, I couldn’t do anything. With it, I have the freedom to change at least some of my environment.”
Part of that freedom included moving ahead with Nicky’s baptism, and Maria’s initiative brought about the possibility of baptism for both of her children. “I began to believe that God could forgive a person like me. The forgiveness was a real gift. Baptism was a show of love to Jesus for what he did for me. I wanted to show the world how much the Lord meant to me and that they could turn to him too – not to proselytize but to lead by example. Despite what happened to me I wanted to show the world I still love God.”
Both children, and Maria herself, were baptized during worship at the wheelchair community where Maria now lives. “I never thought I myself would be baptized, but when I had my transforming experience after having my disability – I was no longer afraid.” Now she feels like she belongs and that both her children are a part of a larger, universal faith community that in some ways might not be totally accepting of her son’s autism, but at least it’s trying.
Seth’s Bar Mitzvah
“The whole [evening of the Bar Mitzvah] focused on Seth’s abilities and not his disabilities,” said his parents Steve and Sharon. “After the Bar Mitzvah, Seth made several long-awaited physical and mental strides – it was almost as if he was saying, ‘You invested the time into me, now I’m going to do what you expected of me’.” Seth is a young man with Angelman’s Syndrome who had reached the age of responsibility in Jewish tradition when most become Bar/Bat Mitzvah, “children of the commandment.” But because of his developmental disability, Seth does not learn or understand like some typical children. Yet, with his congregation’s and family’s encouragement and assistance, he celebrated this milestone in glorious tradition.
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. Seth’s dad says, “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.”
“It began in September 2000, when we were given the list of ‘expectations’ from the church on how our daughter will be required to participate in various activities and study groups in order to be confirmed,” says Kim. “However, there was one problem: The curriculum was not designed for a developmentally delayed child who cannot read or write. The first task was to find a mentor for our special needs confirmand.” They were successful in finding someone to help, a special education teacher who was a church member. But, could a process designed for those with typical intellectual abilities work for Heather?
“[One of the steps] of the journey was to write a creed. Well, my daughter has reached the teenage milestone and has become very fond of boys and TV programs. So, her creed started with thanking God for the animals, friends, and for Kevin on the bus...I was beginning to feel more that Martin [Heather’s dad] was right [in wondering if Heather would ever understand enough to become a church member]. Then one day while we were taking our dog for a ride in the car Heather was sitting up front with her dad and said, ‘Dad, why do people cut down trees?’ Martin said, ‘I guess they don’t want to take care of them anymore.’ Heather then said, ‘They should respect God’s gift and don’t cut them down.’ She then added that maybe she will put posters up to say just that! Well, if I ever had a light bulb moment that was it! That was to be Heather’s Creed. A picture of a tree and her message ‘Respect God’s Gift.’”
Can we learn a lesson from Heather and use whatever God’s gifts are to respect that basic urge to join together? Can we adapt our religious traditions and theologies so that all are welcome?
My daughter, Lindsay, is now at the age that a young person in the Christian tradition would consider confirmation, that rite of passage that would have her become a full member of her congregation. But Lindsay’s developmental disabilities limit her intellectual understanding and cognitive abilities. She will not be able to learn the lessons like the other children, she won’t attend the regular classes with those of her same chronological age, she won’t stand in front of the congregation and answer the traditional questions about her faith. She was baptized as an infant as a sign of God’s grace in her life and her parents and others affirmed their responsibility for raising her in faith, but Lindsay will not confirm that act through a personal profession of faith.
But the congregation where she finds a home is the place where she has been nurtured, loved, cared for; it has been a place where she has taught as much as she has learned. This congregation is where she walked on her own for the first time at age nine; this congregation has prayed for her during medical crises; this congregation has embraced her and she them. It is the community that makes sure she has her favorite chocolate milk at Sunday School while the other children drink apple juice; the congregation which presented her with a Bible video when the others her age ceremoniously received a printed Bible. So, she is already a part of that community, and as the time for confirmation nears that congregation will, with the help of Lindsay’s parents and with God’s grace, find a way to announce to the world that she is in some new way a unique part of a unique group of people. I have no idea what goes on in the mind of this little girl – oops, young woman! – and I have no idea how God moves within her soul, but I do know that she wants to be included and she will be.
Deciding for Inclusion
Can we make changes that make our worshiping communities more welcoming of people with developmental and other disabilities? The key is in the fact that I have not once in this article mentioned installing a ramp or elevator or other renovation that creates a financial red-flag for many of us. Each time inclusion happened in these stories, it happened with very little cost but with much determination – individuals, families, friends, congregation, and clergy. Once we all decide together that attitudes are going to change, they’re going to change. When congregations decide that it’s time to recognize and respect everyone’s urge to join up together, inclusion is going to happen.