Enhancing Mental Outlooks for Parents of Disabled Children

Professor Gail Landsman conducts one of her frequent observations of doctor-parent-child interaction, here with developmental pediatrician Dr. Anthony Malone of the Division of Developmental Pediatrics of Albany Medical Center.

When the New York State Department of Health’s Early Intervention Program looked for candidates to fill the four “parent seats” on the independent panel charged with drawing up Clinical Practice Guidelines for Motor Disabilities, it got something extra in Gail Landsman.
Landsman, who has a daughter with cerebral palsy, is also a UAlbany cultural anthropologist who has conducted National Endowment for the Humanities-funded research into the care and parental response to hospital programs for children with disabilities.

Her study, which began in 1995, observed developmental evaluations of 130 infants and young children (less than 48 months) in the Newborn Follow-Up Program at Albany Medical Center’s Children’s Hospital. Landsman also interviewed 60 women whose children were diagnosed by the program as having a disability or developmental delay. There was a broad range of cultural, ethnic, age, and educational levels represented by this group of women.

None of the women had sought or considered institutionalization of their children. The interviews were “devoted to collecting women’s narratives of their experiences of finding out about and living with their children’s disability,” said Landsman.

As the state guidelines were developed, Landsman was able to contribute information about the importance of culture in a variety of areas relevant to the assessment of young children and the manner in which intervention methods were presented for children with motor disabilities.

Landsman found that cultural background affects how a family will respond to news that their child has or is at risk for a disability. Such responses involve variables such as the cause of the disability; many parents need to be shown that they in fact are not the cause. Other variables include beliefs about how the child will be valued and treated by family and others, how the role of prayer or other spiritual intervention might affect outcomes, and allocation of responsibility for daily care for the child.

Landsman also contributed to the guidelines in the area of “breaking the news” to parents about their child’s condition and on communicating with the family. Where physicians, for instance, might feel compelled to provide a definitive worse case scenario, many parents not only cope better with uncertainty, but also require such uncertainty in order to maintain hope and to develop a positive relationship with the child.

Her interviews also informed Landsman that most women react better to their child being referred to by name, rather than as “the baby.”

Such experiences also make special contributions to the state’s Early Intervention Coordinating Council’s Parent Involvement Committee (PIC), whose charge is to develop recommendations on how to improve and refine the early intervention system for families of infants and toddlers with disabilities.

“Dr. Landsman is an outstanding leader on the committee,” said Margaret Sampson, who provides technical assistance for the PIC as project director for the Family Initiatives Project of the Just Kids Early Childhood Learning Center in Middle Island, N.Y. “Gail’s insights as a parent of a child with special needs and as a cultural anthropologist have enriched our efforts, particularly in addressing parent-physician partnerships, service coordination, family assessment and family support services.”

Landsman has devoted much of her career to exploring issues of nurturance and the construction of motherhood in contemporary American culture. “Nurturing a child changes one’s perspectives on many things,” she said.

Much of her early work evolved into a long-term research project at the sometimes discordant intersection of feminist and disability studies. She found that in America, a society where new reproductive technologies and widespread availability of prenatal testing exist, women experience a cultural mandate to produce perfect children. “Motherhood is increasingly understood in terms of choice,” she said, “but who chooses a disabled child?”

“My study examines the experiences of mothers of infants and young children with disabilities to determine the impact of mothering disabled children on definitions of personhood, concepts of the body, and the meaning of motherhood,” said Landsman. “I am also concerned with applied issues, such as communication between physicians, medical staff and parents.”