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Volume 3 , Issue 1 Date: Spring, 2003 Topic: Expectations Through Life's Passages

He Giveth More Grace (1)

by Charlotte Spinkston

He giveth more grace as the burdens grow greater; He sendeth more strength when the labors increase;
To added afflictions He addeth His Mercy, To multiplied trials His multiplied Peace.
When we have exhausted our store of endurance, When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources, Our Father's full giving is only begun.
His love has no limit, His grace has no measure; His power no boundary known unto men;
For out of His infinite riches in Jesus He giveth and giveth and giveth again.

Annie Flint Johnson (2)

I was asked to write a brief article about the ecumenical response, or that of Christian parents, to pre-natal testing and subsequent discovery of disability. I should first explain that I am not a theologian, having had no formal training at the university level in the area of religion. I am also not a geneticist or professional in the field of medicine. Nor am I the birth parent of a child or children with disabilities.

I am a single African American woman, an adoptive parent, and a Christian “born and raised” as they say, “in the black church”. In addition, I am the sibling of a young man with significant learning disabilities, and professional of more than twenty years in the field of disability. For the past 12 years, the focus of my life’s work has been cultivating and supporting the development and implementation of culturally responsive, community-based, family support and advocacy efforts with multicultural families of children with disabilities living in communities that are and have been traditionally unserved and underserved by mainstream disability services. It is out of this lived experience that I offer the following perspectives.

I would be remiss if I did not first and foremost acknowledge that the so-called Christian response to this issue is informed as much by culture, both ethnic and religious, as well as race and historical and social context. Sociologist Ann Swindler argues that culture creates ways for individuals to organize experience and evaluate reality by providing a repertoire or tool kit of ideas, habits, skills and styles. According to Ann Swindlerm (3), as certain cultural resources become more central in a given life and more fully invested with meaning, they anchor the strategies and realities that people develop”. For many believers, their faith-based assumptions are central to the formation of their other views and they use these religio-cultural tools (4) not only in religious contexts, but also but also, in helping them make sense of other important issues in their lives.

Ultimately, choices made by parents reflect their own cultural and social and religious understanding, but often, professionals who perform pre-natal testing are not likewise knowledgeable about or sensitive to the role religio-cultural beliefs play in a family’s reactions and decision-making processes nor do these realities inform their interactions with families about the options available for consideration when pre-natal testing uncovers a disability in utero.

While the Bible does not deal directly with issues related to pre-natal testing, there are biblical principles Christians would use to evaluate issues arising from the identification of pre-natal disability. These include: the sovereign nature of God, the sanctity of life, the Grace of God, and Faith in God, which is not limited to faith that the child would be “healed” but also that the parents would be given both grace and wisdom to “bring up the child in the way that he/she should go” (5) , which is to say, to raise the child to be the person he/she is intended to be.

It is the experience and perspective of far too many women I have known and have had the opportunity to work with, both Christian as well as non-believers, that termination of the pregnancy is offered as the first response to discovery of pre-natal disabilities with other options being discussed only when decisions not to abort are communicated to health professionals.

It is important that a range of available options be offered to families who receive diagnoses of disability in utero (when it is feasible to do so). It is crucial for families to be informed of community-based family information and support services as well as hospital-based services as soon as possible. Community Parent Resource Centers, which offer a broad range of supports for families at the community level and in a variety of community locations are one. Others include Parent to Parent efforts in which families of newborns with disabilities are matched with “veteran” parents of older children with the same disability. Understanding formal service support options like early intervention that are offered in the homes of families as well as in community or center-based locations are important resources that families should know about and be supported to access prior to delivery- particularly multi-cultural families who are less likely to access community support options for families on issues related to disability.

It is critical that families not feel they need to be silent about their beliefs or secretive with medical staff about seeking counsel and support from their religious communities. I have heard many a family express concern that they would be viewed as superstitious or ignorant because they expressed the need to pray for guidance and strength or seek support from their home church, pastor, or “sister circle”(women’s group). Families with such beliefs should feel comfortable speaking openly about this level of support and they should be encouraged to seek prayer and religious counsel as part of the family support options that are available prior to testing, following diagnosis, throughout the pregnancy, and delivery.

I hope the comments and personal reflections offered have been useful to practitioners, families, and both believers and non-believers. I also hope that I have inspired those who read it to be, in the words of Jennie Weiss Block “copious hosts” (6) to these families. That is - fully present and attentive to the full range of needs experienced by families confronting the realities of prenatal diagnosis of a disability, and to welcome and include these families and their unborn children into the community of faith and the community at large.

"He giveth more grace" - James 4:6; "He increaseth strength" - Isaiah 40:29; "Mercy unto you, and peace, and love, be multiplied" - Jude 2

2 Annie Johnson Flint, "He Giveth More Grace" copyright 1941
3 Swindler, Ann. 1986. “Culture in Action: Symbols and Strategies” in American Sociological Review 51:273-86
4 Sewal, William H. 1992. “A Theory of Structure: Duality, Agency, and Transformation” In American Sociological Review 91:1-29
5 Proverbs 22:6
6 Block, Weiss, Jennie. 2002. “Copious Hosting: A Theology of Access for People with Disabilities” Continuum Press, New York

Charlotte Spinkston is the founder and director of Urban PRIDE, a community-based family support resource center that provides a range of information, training, and support services to culturally and linguistically diverse families of children with disabilities and young adults in urban Boston. Urban PRIDE works with families in ways that build on their strengths and capacities and the rich and diverse resources in the community.
Charlotte has directed, managed, and provided technical assistance Initiatives at the national, regional, state, and community level. She has worked in more than 25 states and three territories designing, implementing, expanding, and strengthening successful community outreach and family engagement initiatives in traditionally underserved communities. She has also advised congressional representatives and governmental agencies on increasing access to and engaging the participation of diverse families in the development of educational, rehabilitation, and service policies and program initiatives at the state, national, and community level.

She has over 15 years of professional experience as a consultant enhancing the capacity and effectiveness of public and private sector organizations with a particular emphasis on issues related to equity, access, leadership, and empowerment of culturally and linguistically diverse families, youth, and communities.

She is a skilled facilitator with advanced knowledge, experience, and training in mediation, negotiation, facilitation, and strategic/participatory action planning as well as methodologies that serve to support groups and organizations to define and clarify their vision and challenges and to develop and implement action plans to guide their work toward their vision of the future. She has a strong commitment to providing access to effective consultation, facilitation, and training to community based organizations, including faith-based organizations in marginalized communities of color who might not otherwise have access to such consultation

Charlotte is the parent of an eight years old daughter named Shante and is a life long resident of the city of Boston.

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