Integrating Care and Livelihoods Reading, Watching, Listening List
Integrating care in our lives requires us to consider our families, friends, livelihoods and living environments. With this list, we explore the ways in which care can bind individuals and communities together, especially when facing the unknown during times such as these. By telling their experiences, these authors, artists and activists describe what it means to give and receive care, through exploring complex social relationships.
Reading
Still Alice by Lisa Genova
Alice Howland is proud of the life she has worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When Alice begins to grow forgetful at first she just dismisses it, but when she gets lost in her own neighborhood she realizes that something is terribly wrong. Alice finds herself in the rapid downward spiral of Alzheimer’s disease. She is only 50 years old. The disease takes hold swiftly, and it changes Alice’s relationship with her family and the world.
How to Say It to Seniors: Closing the Communication Gap
with Our Elders by David Solie
In How to Say It(r) to Seniors, geriatric psychology expert David Solie offers help in removing the typical communication blocks many experiences with the elderly. By sharing his insights into the later stages of life, Solie helps in understanding the unique perspective of seniors, and provides the tools to relate to them.
Can't We Talk about Something More Pleasant?: A Memoir by Roz Chast
In her first memoir, Roz Chast brings her signature wit to the topic of aging parents. Spanning the last several years of their lives and told through four-color cartoons, family photos, and documents, and a narrative as rife with laughs as it is with tears, Chast's memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents.
Medicine Stories: Essays for Radicals by 
Aurora Levins Morales
Aurora Levins Morales weaves together insights and lessons learned over a lifetime of activism to offer a new theory of social justice. Calling for a politics of integrity that recognizes the complicated wholeness of individual and collective lives, Levins Morales delves among the interwoven roots of multiple oppressions, exposing connections, crafting strategies, and uncovering the wellsprings of resilience and joy.
Exile and Pride: Disability, Queerness, and Liberation by Eli Clare
Exile and Pride is essential to the history and future of disability politics. Eli Clare's revelatory writing about his experiences as a white disabled genderqueer activist/writer established him as one of the leading writers on the intersections of queerness and disability and permanently changed the landscape of disability politics and queer liberation. With a poet's devotion to truth and an activist's demand for justice, Clare deftly unspools the multiple histories from which our ever-evolving sense of self unfolds. His essays weave together memoir, history, and political thinking to explore meanings and experiences of home: home as place, community, bodies, identity, and activism. Here readers will find an intersectional framework for understanding how we actually live with the daily hydraulics of oppression, power, and resistance.
Human Rights and the Care of the Self 
by Alexandre Lefebvre
In Human Rights and the Care of the Self Alexandre Lefebvre turns this assumption on its head, showing how the value of human rights also lies in enabling ethical practices of self-transformation. Drawing on Foucault's notion of "care of the self," Lefebvre turns to some of the most celebrated authors and activists in the history of human rights–such as Mary Wollstonecraft, Henri Bergson, Eleanor Roosevelt, and Charles Malik–to discover a vision of human rights as a tool for individuals to work on, improve, and transform themselves for their own sake. This new perspective allows us to appreciate a crucial dimension of human rights, one that can help us to care for ourselves in light of pressing social and psychological problems, such as loneliness, fear, hatred, patriarchy, meaninglessness, boredom, and indignity.
Scarborough by Catherine Hernandez
Scarborough is a low-income, culturally diverse neighborhood east of Toronto, the fourth largest city in North America; like many inner city communities, it suffers under the weight of poverty, drugs, crime, and urban blight. Scarborough the novel employs a multitude of voices to tell the story of a tight-knit neighborhood under fire: among them, Victor, a black artist harassed by the police; Winsum, a West Indian restaurant owner struggling to keep it together; and Hina, a Muslim school worker who witnesses first-hand the impact of poverty on education.
And then there are the three kids who work to rise above a system that consistently fails them: Bing, a gay Filipino boy who lives under the shadow of his father's mental illness; Sylvie, Bing's best friend, a Native girl whose family struggles to find a permanent home to live in; and Laura, whose history of neglect by her mother is destined to repeat itself with her father.
The Unlikely Pilgrimage of Harold Fry
by Rachel Joyce
Recently retired, sweet, emotionally numb Harold Fry is jolted out of his passivity by a letter from Queenie Hennessy, an old friend, who he hasn't heard from in twenty years. She has written to say she is in hospice and wanted to say goodbye. Leaving his tense, bitter wife Maureen to her chores, Harold intends a quick walk to the corner mailbox to post his reply but instead, inspired by a chance encounter, he becomes convinced he must deliver his message in person to Queenie--who is 600 miles away--because as long as he keeps walking, Harold believes that Queenie will not die. So without hiking boots, rain gear, map or cell phone, one of the most endearing characters in current fiction begins his unlikely pilgrimage across the English countryside. Along the way, strangers stir up memories--flashbacks, often painful, from when his marriage was filled with promise and then not, of his inadequacy as a father, and of his shortcomings as a husband. Ironically, his wife Maureen, shocked by her husband's sudden absence, begins to long for his presence. Is it possible for Harold and Maureen to bridge the distance between them? And will Queenie be alive to see Harold arrive at her door?
Every Note Played by Lisa Genova
An accomplished concert pianist, Richard has already suffered many losses in his life: the acrimonious divorce from his ex-wife, Karina; the estrangement of his daughter, Grace; and now, a devastating diagnosis. ALS. The relentlessly progressive paralysis of ALS begins in the cruellest way possible - in his hands. As Richard becomes more and more locked inside his body and can no longer play piano or live on his own, Karina steps in as his reluctant caregiver.
Paralysed in a different way, Karina is trapped within a prison of excuses and blame, stuck in an unfulfilling life as an after-school piano teacher, afraid to pursue the path she abandoned as a young woman. As Richard's muscles, voice and breath fade, the two struggle to reconcile their past before it's too late.
When Breath becomes Air by 
Paul Kalanithi
At the age of thirty-six, on the verge of completing a decade's worth of training as a neurosurgeon, Paul Kalanithi was diagnosed with stage IV lung cancer. One day he was a doctor treating the dying, and the next he was a patient struggling to live. And just like that, the future he and his wife had imagined evaporated. When Breath Becomes Air chronicles Kalanithi's transformation from a naïve medical student "possessed," as he wrote, "by the question of what, given that all organisms die, makes a virtuous and meaningful life" into a neurosurgeon at Stanford working in the brain, the most critical place for human identity, and finally into a patient and new father confronting his own mortality.
Watching
Roma
Roma follows the story of an Indigenous live-in maid/child caregiver of an affluent family in Mexico City. The film follows Cleo, the protagonist, and her affluent employer and their difficulties in their romantic relationships simultaneously. Roma explores how intersections of ethnicity, gender, and class interplay with experiences, options, and choices of both domestic workers and employers.
This Is Us
Kevin, Kate and Randall, three siblings, go through unique personal struggles at different intervals of life as they try to find happiness and get over a tragedy in their past.
The Theory of Everything
After Cambridge University astrophysics student Stephen Hawking (Eddie Redmayne) is diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, he turns reclusive. But literature student Jane Wilde (Felicity Jones) falls in love with him and decides to marry him when she finds out Stephen only has two years to live. Jane eventually delays her own goals to become a full-time caregiver for Stephen. Felicity Jones’ role shows the emotional side of caregiving. Managing caregiver guilt, stress and exhaustion can be difficult, but it’s important for caregivers to replenish before taking care of others.
Life Itself 
Pulitzer Prize-winning film critic Roger Ebert is one of history’s most commendable social commentators and an inspiring model of a life well-lived. Although his head and neck malignancy robbed Ebert of his commanding speech, the famed historian and author never lost his voice in influencing his diverse audience. Based on Ebert’s bestselling memoir “Life Itself,” the documentary portrays how to combat cancer with help from a network of family and friends.
The Fundamentals of Caring
A writer (Paul Rudd) retires after a personal tragedy and becomes a disabled teen's caregiver. When the two embark on an impromptu road trip, their ability to cope is tested as they start to understand the importance of hope and friendship.
The Perks Of Being A Wallflower 
Socially awkward Charlie (Logan Lerman) starts high school isolated and anxious. Luckily, he becomes friends with a group of charismatic seniors, including Sam (Emma Watson) and Patrick (Ezra Miller). His friends bring joy to his life, but his inner turmoil reaches a high when they prepare to leave for college. As the film goes on, we learn more about Charlie’s mental health journey—from his stay in a psychiatric hospital to the details of a childhood trauma. This coming-of-age movie does an exemplary job of showing the highs and lows of growing up with mental illness.
Infinitely Polar Bear
Cam (Mark Ruffalo), a father with bipolar disorder, becomes the sole caregiver for his two daughters while his wife (Zoe Saldana) goes away to graduate school. Throughout the movie, Cam faces many challenges that make it difficult for him to take care of his daughters. However, despite the severity of his condition (and some unique parenting methods that accompany it), Cam learns that he is a good father who cares deeply for his family. Infinitely Polar Bear is a very meaningful portrayal of how families can be impacted by mental illness.
Listening
Podcast: White Lie Living – Self Care
Marti Hannon from World Changer Consulting joined me, the Reluctant Ringmaster from the Caregiving Circus, and our special guest from White Lie Living. Meet Roberto A. DiPietrantonio, a self-proclaimed traveler and former family caregiver as he gives us his unique perspective on self-care. The unique component of our discussion with be the point of view of each host. Marti works mostly with caregivers that are taking care of someone with dementia and I mostly interacts with my autistic child. Stay tuned as we work through what it means to go through the journey in a healthy and happy way.
Podcast: Life is a Sacred Journey
“Life is a Sacred Journey” is designed to share with caregivers and others the many aspects of aging. Micheal Pope, CEO, believes that everyone must contribute if change is to come about. Recent topics include: a Caribbean adventure for family caregivers, dismantling ageism, and coping with the daily stress of caregiving.
Listen here
Podcast: Coping with Grief and Finding Joy during COVID-19
In this episode, Host, Micheal Pope, will be reflecting on how we can balance grief and joy in these times of uncertainty. Whatever you are feeling right now, it's valid. We are all just doing the best we can. So much is being lost amid the COVID-19 global pandemic. We have lost our routines and many freedoms. Many people have lost their jobs. We have lost the ability to visit freely with one another and, in some cases, to go outside our homes. And some people have lost their lives while others have lost the opportunity to be with people who are dying or grieving. One of the lasting legacies of this pandemic can be an increased ability to support one another in our grief.
Podcast Series: Caregiving and Agine
Agewyz – Caregiving guru Jana Panarites engages with unsung heroes — people caring for family members, friends, and relatives amid the demands of their own lives – plus experts in the field of aging and people using film, theater, and other media to creatively address major health issues, foster dialogue, and challenge widespread assumptions about aging. Recent topics include: Autism, Alzheimer’s and caring for aging parents.
Resources
Online Caregiver Support Group
Countries around the world are actively working to contain the COVID-19 pandemic. One strategy is social distancing or avoiding interaction with others. While this strategy is necessary, it can contribute to feelings of isolation and loneliness. This is true for family caregivers and the person they support. Please join this online caregiver support group created by the Ontario Caregiver Organization (OCO) to offset any support groups you may not be able to visit in your community during this time. Discussion will be driven by caregivers (ordinary people who provide physical and emotional support to a family member, partner, friend or neighbour) to discuss issues of highest importance to caregivers with facilitation by an OCO staff person.
Young Caregivers Association
Young Caregivers Association is the leader in service, awareness and empowerment for young carers and their families across Canada.
Blogs
The Ontario Caregiver Organization Blog
The Ontario Caregiver Organization is inspired by caregivers, their stories and their unique experiences, and uses the caregiver voice to inform our work.