A Family of Friends: Choosing a Spiritual Home for Your Family Feb 4, 2013
Originally published in EP Magazine December 2012
Ask for examples of how the congregation has worked with families in the past. Find out if the culture encourages collaboration with families and people with disabilities rather than doing things for them.
By Shelly Thomas Christensen, MA
"We are an Inclusive Congregation where individual differences are accommodated, accepted and appreciated, and where all members of our Synagogue Community participate together."
When visitors and congregants alike enter Old York Road Temple Beth Am near Philadelphia, they are welcomed by an attractive work of art that articulates the culture of the congregation. The words express that each person is important in the eyes of Judaism and the congregation.
As parents of children with disabilities, we are dedicated to providing a good life for our kids. For many of us, that includes a connection to our faith community.
One might think that our houses of worship would welcome us with open arms. That is what sacred communities are supposed to do to provide a welcoming place where people can worship, learn, socialize and lead. Some congregations, like Old York Road Temple Beth Am, and my own congregation in Minneapolis, Bet Shalom, and many others have wholeheartedly committed to welcoming people with disabilities and those who love them. It is a regular practice at inclusive houses of worship for an individual's goals as a participant to be determined while working together with congregants, potential congregants and staff.
Yet, many people feel shut out and alienated from the very place where so many of us find our real sense of community and belonging. Some houses of worship believe that being inclusive means that all architectural barriers have been eliminated. We know, as parents, that while this may indicate an understanding of the challenges that people with physical disabilities may encounter, the real opportunity lies in identifying and eliminating the attitudes that keep people out.
I have met parents who have tried to join a sacred community so that their children could receive a religious education and worship together—and have not been able to cross the barriers created by a lack of understanding about living with a disability and encouraging meaningful participation. For these congregations, people with disabilities are invisible. Yet, according to the 2010 U.S. Census nearly 20% of the population in the United States has a disability. It is hard to imagine how that many people can be invisible.
Parents are often overwhelmed by the demands of raising their children in addition to myriad other responsibilities. When a child has a diagnosis, much more energy is directed toward managing all the aspects of that child's life. Further, many parents do not even acknowledge that they have needs for informational, social and emotional support. Raising a child with a disability can isolate a family from the religious fabric of community.
Many parents simply get tired of trying to find a spiritual home in the face of so many other challenges such as managing the child's educational and medical needs. Churches, synagogues and mosques may not be aware of their own biases and beliefs about people with disabilities which makes for a culture that projects indifference to their needs.
If you have been unable to find a sacred community where you feel comfortable, please do not stop looking for one that meets your needs.
According to Sharon Palay, a woman who searched for 14 years to find a spiritual home where she felt that she belonged, "Just be persistent."
How do you know that a congregation will be welcoming and provide a place where your family's needs will be met? What do you look for in a congregation?
Here are some suggestions that will help you determine if a potential sacred community is a fit for you and your family. An inclusive community will welcome your questions. Good questions can also encourage dialogue and can build new and supportive relationships. Relationships are the key to meaningful participation as you find reliable partners to join you on your sacred journey.
1. Does the congregation's mission statement address inclusion? Search for congregations online. The mission statement should be on the congregational websites
2. Does the congregational religious school focus on the needs of each child, or do they have a "special" class for all children with special needs? An inclusive religious school is willing to work with you and using available information such as your child's IEP.
3. How willing do they seem to be to make accommodations in worship services, religious school, camps, youth group and life cycle events? Ask for examples of how they accommodate and modify for children with disabilities.
4. Does the congregation have an inclusion committee? What does it do? An inclusion committee helps to guide the congregation in inclusive practices.
5. Has the clergy given you information about how people with disabilities (children, teens and adults) are integrated into all aspects of the congregation? Is it person-centered, or a one-size fits-all environment? Look for things such as labeling food at social events (for example, nut free and gluten free alternatives are a good sign). Ask if they will give you and your child a tour of the sanctuary when it's not in use for services. This way your child will be familiar with the environment and will have a chance to touch sacred items. They should be able to try sitting in different seats and locations to find one that works.
6. How well do the clergy understand your needs as a parent? Will they be able to provide comfort and support, as well as to celebrate your child's accomplishments with you? At times you may want spiritual counseling.
7. Can clergy articulate the congregational approach to inclusion by citing religious text that supports involving all people? For example, in the book of Genesis we read that humans were created in the Divine Image. Does this frame the beliefs of the congregation to serve all members?
8. Is this congregation a good fit for siblings? What kinds of activities are available to family members? Youth groups, religious school, camp can offer numerous benefits to children and teens, chief among them the opportunity to be together with peers and make friends.
9. Will you be able to achieve your goals for your own participation in congregational life? There are so many programs and activities to learn, volunteer, participate and lead. Perhaps a congregation that offers babysitting for programs will give you time to relax and enjoy being with other adults.
10. Ask for examples of how the congregation has worked with families in the past. Find out if the culture encourages collaboration with families and people with disabilities rather than doing things for them. How satisfied were the families with the results? Often clergy and congregational professionals can contact other families and ask them if they would be willing to share their experiences with you.
11. Does the congregation regard inclusion as a process that evolves over time based on changing needs, maturity and successful interactions? Ask them to describe how they handled including a family or child with special needs. You will learn a lot about the way the congregation functions to support their congregants.
12. How well do you think they would manage your own sense of urgency with taking the time to create an individualized plan that meets your child's needs? If professionals say that they believe in collaboration and taking one step at a time, your sense of urgency can be mediated with the understanding that success happens one step at a time.
13. What indications are there that you have trusted partners within the congregation? Parents need to know and feel that everyone cares about their child.
14. Is there a social group, support group or affinity group for parents of children with disabilities? This is one way to determine that the congregation takes parents' needs seriously.
15. Is the congregation willing to assess their practices and determine what they must change to become more inclusive? Many congregational leaders believe that they are truly inclusive. I have learned that no matter where a congregation is on the spectrum, an analysis of practices and attitudes will tease out opportunities to grow.
16. What investments has the congregation made to maintain an inclusive culture? Do they provide staff development in special education and serving people with disabilities? Have they retrofitted the physical plant or are they considering that? Have they made drinking fountains and ritual items accessible to people who use wheelchairs?
17. What resources does the organization use from their parent organization?
Rabbi Norman Cohen, Senior Rabbi at Bet Shalom Congregation in Minnetonka MN leads a congregation that welcomes all people. Founded in 1981, the founding members created a vision for Bet Shalom that is enduring and always relevant.
It will be a place that will be a Family of Friends.
It will be a place where you will feel a sense of belonging,
whether you are an adult or a child, young or old.
It will be a place where adults and children will learn together.
It will be a place where nobody will be lost in the shuffle of numbers.
It will be a place where our children will learn to know and understand
other lifestyles and values as well as they understand their own.
It will be a place of involvement – from the rituals on the pulpit to
participation in services to the dishes in the kitchen.
It will be a place where we laugh, cry, love and grieve as we practice our Judaism together."
--Authored by Ann Lonstein
Rabbi Cohen offers this advice to parents and people with disabilities as they search for a sacred community that will meet their needs. "My advice for anybody looking for an inclusive congregation is for them to take a look not only at the physical space, but at how people interact with one another in that space. Ask and observe how the congregation treats all of its members, especially those who seem to be alone or appear to be different. Do people interact at the post-services gathering? Are some left on the fringe? Do people look you in the eye and make you feel at home? Is it a place that reflects the spirit conveyed in Genesis 18, where Abraham and Sarah welcomed the wayfarers into their tent? That is what makes a place sacred."
About the Author:
Shelly Thomas Christensen, MA, is a consultant to sacred communities as they seek to increase inclusive practices. She is the founder of Inclusion Innovations. Shelly is the author of the Jewish Community Guide to Inclusion of People with Disabilities as well as numerous chapters and articles about inclusion in sacred communities. Shelly is Program Manager of the Minneapolis Jewish Community Inclusion Program for People with Disabilities, a position she has held since 2001 and is co-founder of Jewish Disability Awareness Month. Shelly can be reached at firstname.lastname@example.org