Date of Award

5-2015

Document Type

Thesis - Open Access

Degree Name

MA in Women's History

Department

Women’s History Graduate Program

Abstract

This thesis explores the lives of adult typical (ADTYP) siblings, their siblings with intellectual/developmental disabilities (I/DD), their unique relationship, and their need for support. Over seventy percent of adults with intellectual and developmental disabilities (I/DD) in the United States currently live at home with their families. In most cases, the parents of an individual with disabilities are assigned the role of primary caregivers. With this role comes great responsibility and, in households with multiple children, the ADTYP sibling gradually assumes the burden of that responsibility and all the joy and heartache that come with it. By reviewing narratives and conducting oral histories of both ADTYP siblings and siblings with I/DD, I reveal that ADTYP siblings often can provide more insight than parents into the interests of their siblings with I/DD and will often make more appropriate decisions about day-to-day care than those of which their parents are capable. Siblings with I/DD can attest to this better than anyone, and it is therefore equally important to closely examine the ways in which sibling relationships are meaningful to individuals with disabilities. The first chapter of this thesis explores the creation of sibling support programs and organizations historically, and illustrates how typical siblings benefit from these systems as adults. The second chapter then, discusses literature of the sibling movement and the importance of local support groups for ADTYP siblings. The third chapter brings us to the heart of this work as it introduces the voices of siblings with I/DD, who must constitute an essential component of sibling research. When siblings with disabilities are provided the opportunity to have their voices heard, they become the spokespersons for their own lives. Some individuals with I/DD can experience significant challenges in communicating, but when both the ADTYP sibling and the sibling with disabilities are part of the same conversation, clarity and understanding of what is most important to those with I/DD can be shared. Through the interviews in this thesis, what becomes evident is that ADTYP siblings provide more than logistical support and caregiving; they give their siblings with I/DD access to independence and create opportunities for them to exceed their disabilities and limitations.

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