Parenting with a Disability or Chronic Illness: An Essential Bibliography

Purpose:

The purpose of this project is to compile an annotated bibliography of the most essential books for families with minor children and at least one parent or caretaker living with a disability or chronic illness that affects their parenting experience.

The bibliography will help families quickly and easily identify beneficial resources and also efficiently borrow them from libraries nationwide at no cost to them.

Background Context:

One in four Americans lives with a disability (Centers for Disease Control and Prevention), and more than half of adults live with at least one chronic condition such as arthritis, cancer, heart disease, or hypertension (Boersma, Black, & Ward). Among these Americans, many are or wish to become parents: a 2012 estimate suggests that 4.1 million parents live with disabilities and a child under age 18 living at home (Kaye). A disability or chronic illness can significantly impact an individual’s physical or cognitive capabilities in relation to raising a child. The parent may be unable to give piggy-back rides or even to lift and hold a child. They may not have the stamina for outdoor play. Their symptoms and abilities may even vary from day to day, causing additional confusion for children about how their parent can and cannot engage with them. Whether a disability appears before or after a child is born, the parent or parent-to-be with the disability, as well as co-parents and the children themselves, may struggle to make sense of the limitations imposed by the disability and to navigate them in healthy and effective ways. Books about other parents with disabilities and their children are one kind of tool that may help families to process, discuss, and manage their experiences.

Scope:

This project will focus primarily on physical disabilities—such as problems of vision, hearing, and mobility—cognitive disabilities, and physiological medical conditions such as arthritis and cancer. Although psychological diseases such as chronic depression and bipolar disorder can also impact parenting, the bibliography will not initially attempt to tackle this broader scope. However, select works may be included when they clearly and relevantly address the overlap of physical and psychological symptoms.

Most works included are in English, but bilingual works when present are indicated with this icon: