Tag: open access

Power With Anthology: Storytelling for Social Justice

From the website:

“POWER WITH is a collection of multimedia stories that uplift the lived experiences and perspectives of community members, patients, and health care workers and trainees. Specifically, POWER WITH spotlights how our experiences with oppressive (or “power over”) structures impact us individually, while also demonstrating that we are all connected through a greater shared human project. These stories inspire us to imagine what a system that embraces relationships and collective change (or “power with”) could look like.”

As of 10/25/23, some of the examples from the website were as follows:

1. “Ariah Tesema, a pre-med student, shares her journey of pursuing a career in medicine and embracing her multicultural identity. This begins with immigrating from Ethiopia to the United States as a young child and discovering that her multicultural life does not fit neatly into the boxes American society tries to place her in.”

2. “Andrea Morgan, a doctoral student at OHSU, shares her experience moving to Portland from Southern California and her dream to share her love of science with children who come from similar backgrounds.In addition to her studies, Andrea is leading a Racial Equity & Inclusion grant called Black Like Me 360, a project that allows viewers to see and hear in a first-person experience the day-to-day lives of Black Portlanders on campus and in the city in an art installation.”

3. “As a college student, Toren Ikea-Mario helped his father through a difficult cancer diagnosis and treatment. In the process, he realized that the healthcare system was broken, especially for people like his father, and was determined to be a part of the solution.”

To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds

In “To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds,” Anastasia Chipelski shares a personal journey of navigating the challenges of chronic illness. She does not specify which chronic illness(es) she has, but explores a general experience of needing to ration energy when one’s body doesn’t work how it should. She tells about the ways she struggled before diagnosis, oftentimes just collapsing on the floor after work, and how she manages it now, like propping her arm up while brushing her teeth. She reflects on the necessity of embracing periods of rest and idleness to manage their health effectively. Chipelski explores the difficulty of societal expectations that prioritize constant productivity and the struggle of redefining success in the context of chronic illness. The article provides insight into the author’s experiences and the broader societal attitudes toward rest and wellness in the face of chronic health conditions.

With this, she explains how the world can view sick people as lazy, especially when it is an invisible illness, raising questions about how and why we see illness. She proposes patience and rest for people with chronic illnesses, beginning a conversation of how a community can also be utilized to support those with chronic illnesses.

This could be used in a course interested in exploring disability, chronic illness, and invisible illness. Students could discuss Anastasia’s story, and the importance of reading a casual, first person narrative that does not address one illness in particular, but rather, her individual experience with chronic illness in general. This could be a useful piece to read for people in healthcare or studying healthcare to understand the at home experience of someone with an invisible illness.

Sick Woman Theory

Sick Woman Theory by Johanna Hedva is an exploration of the intersection of illness, disability, and feminism. Hedva challenges traditional notions of productivity and success, advocating for a reevaluation of societal attitudes toward bodies that deviate from the norm. The theory delves into the experiences of sick and disabled individuals, highlighting the systemic issues they face, and calling for a more inclusive and compassionate understanding of chronic illness. Hedva’s work prompts a reconsideration of the value placed on health and challenges the ableist structures ingrained in society.

Specifically, Hedva provides a story of when they were unable to participate, in the streets, during the Black Lives Matter protests. Due to their many illnesses, including PTSD, anxiety, fibromyalgia, and endometriosis. Hedva describes chronic illness, writing, “I have chronic illness. For those who don’t know what chronic illness means: the word “chronic” comes from the Greek “chronos,” χρόνος, which means “time” (think of “chronology”). In certain contexts, it can mean “a lifetime.” So, a chronic illness is an illness that lasts a lifetime. In other words, it does not get better. There is no cure.” They explain the implications of chronic illness in times of resistance.

This source could be used in a course discussing disability and chronic illness, especially when focusing on intersectionality. It raises questions about who is allowed to participate in society, and how they are allowed to participate. Hedva affirms the experience of disabled bodies, advocating for resistance through rest. Courses interested in illness and politics, illness and relationships, and how disabled bodies can mobilize without moving would benefit from this reading.

Squirmy and Grubs YouTube Channel

“Squirmy and Grubs” are a married couple who make Youtube videos, podcasts, and Instagram posts about life as an interabled couple. Shane, who has spinal muscular atrophy, and Hannah, who does not, share their daily lives, challenges, and adventures. They provide insight into their interabled relationship, educating viewers about disability awareness, acceptance, and the importance of genuine connections. Their youtube channel spreads awareness about Spinal Muscular Atrophy, but also dives into what it’s like to be together as one person who has a physical disability, and one who does not. They share videos that share their daily routine and how Hannah cares for Shane. Though, they also emphasize the ways that Shane gives care to Hannah, as well, even though he has very limited mobility. This Youtube channel is important because it shows how an interabled relationship is not really so different, and that disabled people can be in genuine and fulfilling relationships.

This youtube channel gives a first person perspective of life as an interabled couple and could be used in a classroom setting for classes focused on learning about reciprocal care, and the logistics of taking care of someone with a physical disability in a way that shows humanness, support, reciprocity, and sensitivity. They provide many great videos on how certain people with disabilities would like to be addressed, cared for, and interacted with in public and private settings, sharing a unique perspective. Specific videos to watch for learning and analytical purposes are titled, “Intimacy in Our Marriage Q & A,” “We’re Hiring a Caregiver?!” and “Our Physical Intimacy and Romance Explained.” These videos provided a candid look into their life as an interabled couple, sparking discussion on the role of media representation of disability, and how humor plays into storytelling and health narratives.

Real Life Stories- Diabetes.co.uk

The diabetes.co.uk Real-life Stories page features a collection of personal narratives from individuals sharing their experiences living with diabetes. These stories provide insights into the challenges, triumphs, and daily lives of people managing both type 1 and type 2 diabetes. Contributors from diverse backgrounds and perspectives share valuable information about their diabetes, offering support and inspiration to others facing similar circumstances. The page serves as a platform for fostering a sense of community and understanding among those affected by diabetes, while also promoting awareness and education about the condition. This page could be used in a class for students of healthcare looking to discuss the impact of community engagement and narratives in medicine. Classes could discuss the differences between type 1 and type 2 diabetes, analyzing how each is represented differently in the media and by those who have it. Below are two summaries of patient stories. The site could also prompt discussion about the role of narratives in coping and social support, and the potential (and limitations) of storysharing on a website such as this.

Scot Lester, a member of the Diabetes Forum, shares his diabetes journey, beginning with his diagnosis in May 2012 due to extreme fatigue and thrush on his tongue. Despite lacking classic symptoms, a subsequent HbA1C test revealed he was a type 2 diabetic. Scot adopted a very low-carb/high-fat diet and embraced a proactive approach to monitoring his blood glucose levels. Alongside this, Scot has a 4-year-old son, and both of his parents, who died, had diabetes. He quickly saw positive results, and with his doctor’s approval, he reduced his medication intake. Ignoring advice from healthcare professionals, Scot continued following the guidance from the Diabetes Forum community, achieving remarkable success. After just over three months, his HbA1c dropped to 5.5%, surprising his nurse. He also experienced improvements in cholesterol levels. Encouraged by his progress, Scot decided to discontinue medication two days after a follow-up appointment, with no adverse effects on his glucose levels. He maintains a routine of exercise and relies on a reliable blood glucose meter. This story serves as inspiration, and he offers advice to others, advocating for a healthy lifestyle and self-cooked meals. He showcases the effectiveness of his personalized approach to diabetes management.

Four years ago, Gillian Peace was diagnosed with type 1 diabetes after experiencing symptoms following a vacation in Thailand. Rapid weight loss prompted a visit to her doctor, leading to the discovery of a blood sugar level of 33. Gillian was hospitalized for three days but faced fears of needles and hospitals. However, she maintained a surprisingly healthy appearance.

Struggling with the idea of multiple daily injections and finger pricks, she gradually learned diabetes management, experiencing fluctuations between hyperglycemia and hypoglycemia. Despite initial challenges, her diabetes stabilized, but her decision to have a baby added new complexities. Throughout pregnancy, Gillian managed tight blood sugar control with increased insulin needs and frequent injections. After giving birth via cesarean section at 36 weeks, she faced the “dawn phenomenon,” requiring early-morning injections to control rising blood sugars. Eventually, she was able to transition to an insulin pump, finding it to be a positive change that provided more freedom. Connecting with other diabetic mothers during pregnancy led to the formation of a support group, including Type 1, Type 2, and gestational diabetic mothers. This community offered her valuable support and insights, including guidance with her insulin pump. Gillian expresses gratitude for the community she has found through diabetes.

These stories, and many others represent the variety of experiences that exist with diabetes, shedding light on the importance of diabetes narratives.

Ashley’s Story

Ashley James has successfully managed type 2 diabetes for 12 years, but her journey started with denial. At 31, she struggled to accept her diagnosis, refusing to take prescribed medication. A wake-up call came when she spoke to a colleague, a nephrologist, who emphasized the potential complications of unmanaged diabetes. Realizing the need for a change, Ashley began working with her primary care doctor. And despite initial challenges, she made small adjustments to her lifestyle, incorporating better nutrition, physical activity, and medication adherence. These changes resulted in weight loss, but also increased her energy, and improved blood sugar levels.

Facing limited access to diabetes self-management education and support (DSMES), Ashley recognized a gap in her community and became a diabetes care and education specialist (DCES). She took her experiences to local churches, leveraging the influence of pastors to address diabetes stigma and misconceptions. Through sharing her story, Ashley helped others at her church accept their diagnoses and understand the benefits of diabetes education.

Ashley’s story emphasizes the importance of accepting the diagnosis early to take proactive steps in managing diabetes. She believes in recognizing individuals beyond their diseases and advocates for listening to their stories to provide meaningful support. Ashley’s journey serves as a push for those struggling with denial.

Ashley’s story could be used in healthcare class settings to spark discussion about the role of narratives and community in managing diabetes. As well, this narrative would be great for a public health class, or pre-ed students, to gain insight on how someone experiences denial when diagnosed, and how they get past that.

Dying: A Memoir

Cory Taylor’s memoir, “Dying: A Memoir,” confronts the profound questions surrounding death and the pursuit of a dignified end. At the age of 60, Taylor was diagnosed with incurable cancer, propelling her into a realm where death was an uncomfortable, often ignored reality. Having witnessed her parents’ agonizing decline into dementia and death in nursing homes, Taylor was determined to approach her own mortality differently. Fueled by a desire for a better death, she started on a journey that led her to become an ambassador for the dying. In a society that often shies away from discussing death, Taylor explored the silence surrounding it, describing it as a “monstrous silence” that leaves individuals facing death feeling isolated.

The memoir raises important questions about the medical profession’s reluctance to discuss death, the prioritization of expensive cancer treatments over palliative care research, and the influence of religious groups in the debate on assisted dying. Taylor herself contemplated assisted dying, even ordering a euthanasia drug, but struggled with the decision due to the absence of a supportive legal framework and concerns about the impact on her loved ones.What sets Taylor’s memoir apart is her lack of self-righteousness. She doesn’t embark on a spiritual journey or offer easy answers. Instead, she explores the complexities within her own family, highlighting irreconcilable rifts and exploring the history that shaped her.

The narrative weaves together scenes from Taylor’s life, from her childhood experiences in Fiji to her first recognition of desire and mortality. Throughout, she emphasizes that life’s messiness is its own reward, challenging the notion of a neat, happy ending. Cory Taylor died shortly after the book’s publication, leaving behind a legacy that reflects her quest for a good death. While the book doesn’t provide a definitive conclusion, Taylor’s peaceful death surrounded by family suggests that, in some ways, her desire for a dignified end was fulfilled.

This story could be used as an example of a patient’s personal narrative of dying in any class that addresses issues of aging and dying. This book could serve as a strong and vulnerable patient narrative for a course in healthcare that wants to address narrative medicine, raising questions of what makes a good story, what doesn’t get talked about, and how many factors and narratives shape the reality of death.

Why I Became a Speech-Language Pathologist: My SLP Story

Lisette Edgar, a professional speech language pathologist (SLP), recounts her journey discovering the field through her son’s speech challenges and ultimately deciding to pursue a career as an SLP. She details her son’s pronunciation difficulties that were first noticed when he was three, and how, in getting him assistance, she was catapulted into the unfamiliar world of speech therapy. Due to a shortage of speech therapists at her son’s school, Edgar ended up doing a lot of lessons and practice at home. When she began working as a substitute teacher at her son’s school, she got even more exposure to the work speech therapists do, and she decided to go to graduate school to become an SLP. On Edgar’s blog, there are many resources and lessons that focus on subjects from autism to apraxia to stuttering. This post would be useful in a pre-professional medical class to inform students about the different pathways they can take with their medical careers aside from being physicians. It would also fit very well into a graduate SLP class as an introduction to how various people get involved with the field, and how signs of speech difficulties show up—and can often be overlooked—in young children. One assignment that could be created off of this is to have students browse the resources and then create an exercise of their own that could be used to help children with a speech condition.

Living with Alzheimer’s Disease: Barry’s story

“Barry was in his early sixties when he was diagnosed with Alzheimer’s disease. He and his husband, Randy, had recently moved to an idyllic new town on Cape Cod, excited to start a new chapter in their lives. The diagnosis meant that he not only had to give up his job but also his plans for the future. Worried about the loss of awareness of himself and his life that would ultimately come, Barry prepared his will and visited assisted living facilities. Making these decisions now gives him a sense of comfort that he is still in control of his own life.”

This story is pulled from Biogen, a Massachusetts-based biotech company, in their efforts to shed light on individual patient stories. This link takes you to the Biogen website, where you will find both the video interview and transcript. Biogen is not mentioned in this story but could be an interesting discussion point for a class focused on capitalist healthcare in the US. This story illustrates the importance of personal agency and control in a patient’s journey with Alzheimer’s disease and could be helpful in a class focused on narrative healthcare and patient autonomy. Discussions could include medical advertisements, medical autonomy at different stages of life, stereotypic images of who is an Alzheimer patient or caregiver, and privileges that come with having medical autonomy. The video is also interesting as a multi-layered text (for example, if one viewed only the video, it isn’t at all apparent that this is a story about illness, a feature that can prompt discussion about how this contributes to a message about early diagnosis and patient autonomy).

My Journey with Alzheimer’s Disease: Greg

Author and advocate Greg O’Brien shares his journey as a caregiver for his parents, who both had Alzheimer’s disease, as well as someone diagnosed with Alzheimer’s himself (he is also the author of a book, On Pluto: Inside the Mind of Alzheimer’s). In this video (which also includes a transcript), he provides a detailed account of his personal experience with the condition, starting with the fear and anxiety he felt upon noticing the symptoms he initially saw in his parents and the relief experienced upon receiving a formal diagnosis, which allowed him to put a name to the enemy he was facing. As the story progresses, Greg opens up about the progressive nature of Alzheimer’s, where he experiences more frequent withdrawal, anger, and hallucinations. He emphasizes the need to live in the present moment because, with an Alzheimer’s diagnosis, there is no clear future. He discusses his strategies for fighting the disease, which include journaling daily, maintaining a disciplined lifestyle, and staying physically active.

This story can serve as a case study to understand the emotional and psychological challenges faced by individuals dealing with an Alzheimer’s diagnosis. It also addresses questions about agency and coping, and challenges the stereotype that people with dementia are just passive victims.