Surgeons carefully assess the risks and benefits of treatment before consenting to perform operative interventions. They are influenced by objective findings and by affective factors such as courage and the determination to survive expressed by their patients. They manage risks, doubts, and fears-both their patients' and their own-relying on trust and commitment on both sides to ensure the success of the surgical mission. The trust of their patients has a strong influence on the surgeons' decisions and actions.
Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and clinical genetics communities. Varying opinions exist amongst the disability community: some value genetic services while others are opposed. However, there is limited research exploring the opinions of individuals with a disability regarding issues related to reproduction and genetic services in the context of personal experience. This exploratory qualitative study involved interviews with seven women and three men who self-identify as having a disability. We sought to gain their perspectives on experiences with disability, thoughts about reproduction and parenting, and perceptions of genetic services. Transcripts of the interviews were analyzed thematically using qualitative content analysis. Data analysis showed that societal views of disability affected the lived experience and impacted reproductive decision-making for those with a disability. It also showed differing interest in genetic services. Concerns about the perceived collective implications of genetic services were also raised. These findings contribute to the understanding of the disability perspective toward reproductive decision-making and genetic services. A further goal is to promote a meaningful dialogue between the genetics and disability communities, with the potential to enhance the genetic and reproductive care provided to individuals with disabilities.
At the heart of this paper is a collaboratively created script representing a line of analysis from the Reimagining Parenting Possibilities Project. The script is performed as a forum theatre scene used to disseminate findings from this ongoing research project. Forum theatre, an exemplar of Augusto Boal's "theatre of the oppressed," invites audience members into a scene, inventing through embodied performance and improvisation analyses and interventions in shared social dilemmas (Boal, 2006). The project rests upon our joint investments in exploring how the denial and containment of parenthood for people labeled with intellectual and developmental disabilities stems from enduring ableist views as to who is deemed "fit" to raise future citizens, and related efforts to erase disability. We introduce this work with a prologue -offering context for the ableist dynamic and intimate injustices that unfold in the scene. We also provide some background on how we developed the scene, attending to the democratizing and transformative potential of our methodology. Finally, by way of an epilogue, we sketch a number of questions about the scene's potential to promote intimate and disability justice.
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