Section 7: Chronic Illness, Chronic Pain, Fatphobia, and Capitalist Profiteering
Area 1: Lived Experiences of Chronically Ill People & Basic Allyship
Area 2: Capitalism and the Medical Industrial Complex
Area 3: Fat Liberation and Disability
Summary
In the U.S., health issues are seen as compartmentalized, as if your heart isn’t connected to your nervous system. This cultural norm, enhanced by capitalism, has impacted everything from how federal policy is made to the belief that chronically ill people are just lazy or “lack willpower”. For example, there is no such thing as a “chronic illness specialist” in the U.S. Where do chronically ill people go for support, treatment, and advocacy? Why don’t medical and service providers learn about holistic, patient-centered care? Why does the medical system prioritize “health” over the person’s self-defined wellness?
There are limited educational materials that address the issues affecting chronically ill and chronically pained folks from a framework of disability justice, anti-capitalism, violence prevention, and abolition. These gaps also mean that non-chronically ill folks, especially those without a loved one experiencing a chronic illness or chronic pain, are incredibly ignorant of the struggles, isolation, and experiences of those navigating the punishing medical industrial complex, ableist work environments where accommodation requests often go unrecognized, and other areas of daily life.
Therefore, the first learning area of this section is simply about the lived experiencing of chronically ill and chronically pained folks and an introduction to allyship. The second section is focused on the institutional nature of harm and erasure of chronically ill and chronically pained folks, and ways to develop more supportive and affirming collaborations and services for chronically ill people. There are also some specific resources on the connectedness of ableism and fatphobia because fat people with chronic illness are some of the most stigmatized and underserved communities in the chronically ill population.
Area 1: Lived Experiences of Chronically Ill People & Basic Allyship
100 Ways to Show Up for People with a Chronic Illness: 3,700 word article by Maggie Levantovskaya, Vice. Description: “Having a supportive network is crucial when you have a chronic illness. But hearing problematic assumptions or intrusive questions is hurtful and exhausting, especially when they come from friends, partners, colleagues, teachers, and well-meaning strangers. So, here's a list of suggestions for how to be a better ally to people with chronic illness, based on my experiences and conversations with friends who have other diagnoses…”
Resources for Supporting Families Coping with Chronic Illness: Resource Compilation by Online MSW Programs. Description: This webpage compiles resources for social workers and other service providers
Performing Normal But Becoming Crip: Living with Chronic Pain: 6,630 word paper by Emma Shepard, Scandinavian Journal of Disability Research. Description: “In exploring how chronic pain develops slowly, and is often accompanied by disbelief and silencing, the paper considers whether crip time can include liminal spaces of becoming chronically pained, including medicalised spaces/times of testing and diagnosis. The paper then considers how pacing, which can be both a rehabilitative normalizing practice and a practice of self-care, is a part of moving through time in ways which can be read as both normative and non-normative. The paper concludes that there are multiple ways of moving through crip time, and multiple ways of living crip lives—which include liminal spaces, and spaces with conflicting understandings.”
Making the Case: Violence and Chronic Illness: Fact Sheet by the Prevention Institute. Description: While it has been long understood that violence has implications for emotional and physical injury, it is only relatively recently that we are beginning to recognize the longer-term effects that reap an extensive toll on the broader health status of individuals, families and communities. These health consequences include asthma, significant alteration of healthy eating and activity, heart disease and hypertension, ulcers and gastrointestinal disorders, diabetes, neurological and musculoskeletal diseases, and lung disease.
Rare Disease Database: Website by the National Organization on Rare Diseases (NORD). Description: A list of the less common chronic illnesses along with links to their respective advocacy organizations. We encourage people interested in building capacity around chronic illness to make a plan to delve into the experiences, diagnosis, treatment, and culture of a given chronic illness on a consistent basis. For example, you might delve into one illness each week or every two weeks. Learn about the condition by utilizing patient-centered advocacy organizations and then seek out videos on youtube or other places to learn about the experiences of people with that disability from their own viewpoints. This will expand your ability to understand the experiences of people with a wide variety of chronic illnesses and will teach you a LOT about how violent the medical system is, and how you can better advocate for and collaborate with chronically ill survivors.
Advancing Social Connectedness as a Public Health Priority: 1 hour webinar by the National Association of Chronic Disease Directors. Description: Loneliness and isolation, exacerbated by the onset of the third year of the COVID-19 pandemic, have demonstrated a long-overdue need to address and achieve greater social connectedness at the population level. Beyond individual emotional, mental, and behavioral outcomes across the lifespan, loneliness and isolation affect overall community resiliency. NACDD, along with Mental Health America and two states implementing the Building Resilient Inclusive Communities (BRIC) program, will discuss the impact of social isolation on mental health and resilience, and the role public health can play in advancing these efforts. Webinar attendees also will get to hear how states are currently leveraging diverse partnerships to implement strategies from a policy, systems, and environmental change lens.
Area 2: Capitalism and the Medical Industrial Complex
What ‘Integrated Care’ Means for Patients: 50 minute webinar by Global Healthy Living Foundation’s Creaky Joints. Description: Patients with chronic, complex health conditions experience better treatment outcomes when they have access to services and treatments designed for their unique needs. This webinar explores common problems patients experience and how the health care system is responding to provide solutions intended to help people get better faster. In her current role, Newton leads an interdisciplinary team tasked with closing the gap between research and service to bring what we learn through evidence-based research to practice and in the service of patients.
Redlining and Chronic Disease: The Legacy of Racism on the Built Environment and on Health: 1 hour, 15 minute by National Association of Chronic Disease Directors. Description: In this webinar, national experts will help you understand the practice of redlining and illustrate the correlations between redlining and health disparities. You’ll also see a demonstration of the University of Richmond’s web application, “Mapping Inequality: Redlining in New Deal America” that can be used in your work as you make connections between systemic racism and health in communities within your own state.
This Capitalism Is Killing Me featuring Elliott Fukui: 2 hour webinar by The Fireweed Collective. Description: This webinar offers an intro to how capitalism has created and maintained the constructs of disability and insanity, how these ideas are upheld by systems, and an opportunity to envision what life could look like outside of capitalism.
Abolition Medicine: 1,640 word paper by Yoshiko Iwai, Zahra H Khan, Sayantani DasGupta, The Lancet. Description: A published paper outlining the ways in which the medical industrial complex is based upon racism, ableism, and violence – and how practitioners can reenvision a truly just medical system of care. “The essential work of abolition medicine is to interrogate the upstream structures that enable downstream violence, like police brutality, in addition to reimagining the work of medicine altogether as an anti-racist practice. Abolition medicine means challenging race-based diagnostic tools and treatment guidelines that reinforce antiquated and scientifically inaccurate notions of biological race.” The paper ends with links to 10 other papers related to abolitionism and the medical industry.
Area 3: Fat Liberation and Disability
The Harmful and Insidious Effects of Fatphobia: 2,800 word essay by Stephanie Dolgoff. Description: This essay gives a crash course on what fatphobia is and its impacts. The essay ends with links to other essays regarding different facets of fatphobia.
When Body Size Blocks a Diagnosis: 1,940 word essay by Taneasha White. Description: This essay combines research with the personal story of the author to convey the ways in which ableism and fatphobia result in harm to those living at the intersections of those experiences. Some of the things addressed include the “standardization” of weight classifications in U.S. medicine, the fallacy of weight and health being correlated, the ways in which fatphobia supports culture that leads to disordered eating, and the connections between various kinds of inequities.
How Fatphobia Threatened My Life With Chronic Illness: 1,700 essay by Charlie Bickel, The Mighty. Description: A story shared by the author about their experiences as a chronically ill fat person seeking medical care in the current U.S. medical system.
Addressing Weight Stigma and Fatphobia in Public Health: Resource Guide by Amanda Montgomery, RD, LDN, Collaboratory for Health Justice. Description: “’Obesity’ related public health approaches can be harmful because they are based on limited or poor quality evidence, they focus on preventing one outcome at the expense of another outcome, they lack community engagement and they ignore the root cause of problems. However, the public health field has not taken a critical look at this research, focusing on the narrative that weight is controllable and a personal responsibility. If the goal is to find the most ethical and effective strategies to achieve optimal public health, there needs to be an alternative to “obesity” and weight-focused approaches and a shift in understanding of weight stigma as a social justice issue.”