In what follows, I represent and analyze time as "crip time" in the context of parenting a child with disabilities. That is, I seek to challenge, reimagine, and even upend, the normalized structures that often order our lives in time and our expectations of what makes for a meaningful life in the present, and as a result, a desirable, or even possible future. Using Alison Kafer's Feminist, Queer, Crip as a foundation, in four autoethnographic accounts, recounting a typical day in my life with my 15-year-old son, I consider time as Stasis, Maintenance, (Un)productive, and Presence.
There is a problem with the baby. These words, dreaded by every expectant parent, came spilling forth from the doctor's mouth like a summons we could not escape. That was a defining moment, perhaps the defining moment that altered the course of our lives. It was not a summons to appear for a judgment, but a summons to live differently, to walk an unknown path. We immediately realized the many potential losses we faced in that different life, but we did not know and could not have known the depth of life, joy and goodness we would come to experience when we began walking that dark journey together.A clear line marks before and after this moment in my life. On one side is the life I had before March 12, 2002, a life represented by a studio portrait of my husband and me poised in perfect position, smiling directly into the camera lens. On the other side is the life I have now, a life represented by our favorite family photo in which my husband and I are engaged in a tickle fight with our three boys. Everyone is laughing and no one is paying attention to the camera. Around my house, we call the previous time, before Will. And frankly, anything that happened before Will is a blur. The cast of characters present in the dividing moment includes Adam (my husband), a doctor, and me. To add another perspective to my account, I include Adam's voice. His rendition of the event adds color and depth where mine falls flat. He poetically depicts some of the events I remember as sterile and pragmatic. We investigate the parental experience of receiving a devastating diagnosis for our first child by bringing our private moment into the public eye.1 It is our hope that readers will, as Frank says, 2 think with our story by considering our cognitive and emotional responses of fear and faith as we move through and past the most traumatic day of our lives. Additionally, our story adds to the growing yet still underrepresented patient and family accounts. Through this account, we invite healthcare professionals into our home, thoughts, feelings and daily experiences to give a fuller view of what they experience with patients and families in the clinical setting. Ellis and colleagues explain autoethnography as an approach to research and writing that seeks to describe and systematically analyze personal experience in order to understand cultural experience (273).3 Using thick description, writers produce texts that are accessible and challenge the norms of scientific research by acknowledging the importance of the process of research as well as the product. Autoethnography is concerned with both personal and social change and therefore seeks to be accessible to a wider and more diverse audience often disregarded by traditional research.Narratives such as this one engage two authors' experiences of an event. Specifically, co-constructed narratives aim to show how people collaboratively cope with the ambiguities, uncertainties, and contradictions of being friends, family, and/or intimate partners (279).3 When two authors collaborate on a...
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.