Narrative inquiry in bioethics最新文献

This commentary shares my experiences of overcoming bias and negativity to lead an active, fulfilling, and meaningful life as someone with Down syndrome. With my parents' input and support, I dealt with various issues and challenges posed by societal misconceptions and outdated ideas. This commentary is enriched by narratives written by 12 parents of children with Down syndrome. Many of the authors have faced discrimination from healthcare professionals, educators, and policymakers. The stories discuss bias, stereotypes, negativity, and outdated ideas and information, showing the need for better training of healthcare and other professionals about disabilities, and the importance of inclusive policies and practices.Despite legislative advances, discrimination persists. For the authors and me, family and community support have played a crucial role in providing meaningful experiences and overcoming barriers, from early education to career development. By engaging in advocacy and support groups, parents can share resources, raise awareness, and foster hope to overcome discrimination and create new opportunities for their children.

A death by medical assistance in dying (MAiD) is often equated with a good death or a death with dignity, yet how MAiD-bereaved family members in Canada conceptualize the relationship between dignity and MAiD is currently unknown. Using a critical narrative inquiry approach, this article explores how family members with complex MAiD experiences constructed the concept of dignity in their bereavement stories. Dignity is conceived of as a thick, culturally relative concept with descriptive and evaluative meanings. Twelve family members from three of Canada's provinces (Alberta, British Columbia, and Ontario) completed narrative interviews about their experiences with complex MAiD bereavement.The interview transcripts are presented as short stories that portray how participants talk about dignity in relation to MAiD. These stories were analyzed from a critical narrative analysis approach that examined how institutional discourses are weaved into everyday stories about personal experience. The analysis identified three dignity narratives in participants' stories: the Dignified MAiD Narrative, the Traumatic MAiD Narrative, and the Unjust MAiD Narrative. The Dignified MAiD Narrative may provide solace to family members who agreed with their loved one's decision to choose MAiD; however, this narrative may simultaneously create moral tensions by setting unrealistic expectations for family members. The Traumatic and Unjust MAiD Narratives provide counter perspectives that challenge the notion that MAiD unequivocally leaves a legacy of a dignified, good death.

This commentary reflects on twelve narratives authored by parents of children with Down syndrome. While the narratives represent a diverse set of experiences, the commentary identifies some repeated narrative aims, unified under the goal of recognition. For example, multiple authors explicitly or implicitly seek recognition of their children beyond stereotypes while others hope to make ableist values and practices more visible to clinicians and other readers. Through their rich descriptions of parenting, the authors also show themselves to be in need of support both in terms of material and bureaucratic support to be able to provide their children with necessary resources but also support for their parental decision-making. In other words, the authors make the labor of parenting a disabled child recognizable, attributing the cause of much of the labor to ableist systems and beliefs. The commentary suggests that recognition-of children with Down syndrome as fully human and of parents as in need of support-is a valuable and necessary starting point for political action.

This commentary discusses themes drawn from twelve narratives by parents of people with Down syndrome. While each parent described unique aspects of their children and of their family's experience, a common thread throughout was making room for the different ways in which their children experienced and navigated the world. They described their children's differences sometimes being honored and sometimes being devalued, and in their narratives consistently advocate for ways in which we can hold space for those differences. Healthcare institutions, schools, and family life are all sites where their children's lives are shaped by assumptions and values about how to see, interact with, and accommodate difference.

This commentary discusses the complexities of neurodivergence and the struggles faced by neuro-divergent individuals and their families. Reflecting on narratives from the journal Narrative Inquiry in Bioethics, I examine the challenges of understanding, acceptance, and advocating for people who are neurodiverse within a neurotypical society. I address such issues as misdiagnosis, lack of diagnosis, and the harmful effects of masking behaviors. I also touch on controversial treatments like Applied Behavior Analysis (ABA), noting its acceptance by many professionals who work with autistic people, but also its criticisms from members of the autism community. I stress the importance of embracing neurodiversity for the health and resilience of society and argue that diversity in nature and human cognition promotes adaptation and survival. Lastly, I highlight the need to remove barriers to healthcare and therapy, support responsible research, encourage continuing education for professionals, and foster neurodiverse relationships. By honoring and protecting diversity, we can strengthen our communities and improve the human experience for everyone.