Book summary “Care Work”: summary

Introduction

You live in a world built for the non-disabled, where physical and mental limitations often mean isolation and systemic abandonment. Mainstream disability rights focus on legal access, but you frequently find that state services remain violent, scarce, or completely inaccessible.

Leah Lakshmi Piepzna-Samarasinha offers disability justice as a collective framework created by queer, trans, black, and indigenous disabled people. You will discover how grassroots communities build interdependent care webs to survive systemic ableism without relying on police or nonprofits.

The book explores radical accessibility, crip emotional intelligence, fair trade emotional labor, and sustainable movement building. You will learn how to transform isolation into collective resilience.

• How do you build grassroots care webs?
• What does crip emotional intelligence look like in practice?
• How can movements survive without burning out?

1. Disability Justice Principles and Care Webs

Disability Justice was founded in 2005 by Patty Berne, Mia Mingus, Stacey Milbern, Leroy Moore, Eli Clare, and Sebastian Margaret. Mainstream disability rights historically focused on white, single-issue perspectives and relied on civil rights legislation. In contrast, Disability Justice recognizes that ableism is intertwined with white supremacy, heteropatriarchy, and capitalism.

Disability Justice centers marginalized QTBIPOC and rejects state surveillance through grassroots care webs.

Sins Invalid in Oakland brought QTBIPOC sex, bodies, and political struggles to the stage. You can trace a rich lineage of writing from bed, from Frida Kahlo painting in bed to Grace Lee Boggs writing from her wheelchair. Starting in 2007, the author spent years writing and organizing from a big sick-and-disabled femme of color bed cave in Oakland.

Ten core principles shape this political framework:

• Intersectionality recognizes that multiple identities create shifting sites of privilege and oppression.
• Leadership of Those Most Impacted requires guidance from individuals with direct knowledge of systemic ableist supremacy.
• Anti-Capitalist Politic rejects normative standards of production where human worth is measured economically.
• Cross-Movement Solidarity and Commitment to Cross-Disability Solidarity unite physical impairments, chronic illness, psychiatric survivors, neurodivergence, cognitive impairments, and sensory minorities.
• Recognizing Wholeness values individuals independently of capitalist productivity while honoring internal experiences.
• Sustainability preserves energy and prevents burnout within movements.
• Interdependence and Collective Access emphasize meeting community needs together rather than defaulting to state solutions.
• Collective Liberation connects individual survival to the dismantling of all systems of oppression.

Building Care Webs

Sick and disabled communities build interdependent care webs to meet their needs autonomously. You can avoid the abuse, surveillance, and lack of control historically tied to state institutions and biological families. Disabled people faced institutionalization, Ugly Laws from the 1700s to 1970s, and carceral systems where seeking care meant losing civil rights.

Marsha P. Johnson and Sylvia Rivera established STAR House, while AIDS prisoner networks operated in the 1980s and 1990s alongside the New England Drug Users Union. Loree Erickson, a queer femmegimp porn star and academic living in Toronto weighing 130 lbs, trained friends to assist with daily care. This friend-based care collective operated for 15 years as a survival strategy to bypass inadequate state-funded attendant care.

Creating Collective Access formed at the 2010 Allied Media Conference and US Social Forum in Detroit. Thirteen disabled people crammed into a wheelchair-accessible van, shared fragrance-free hair and skin products, and coordinated room sharing during the 4-day event. Emergency-response care webs often collapse because they fail to account for long-term sustainability and systemic ableism.

CCA Bay Area met twice a year for a year before dissolving due to interpersonal conflict and the complexities of matching different accessibility needs. Virtual spaces like Sick and Disabled Queers existed for 8 years to break isolation across a wide geographic network. Members mailed extra inhalers, crowdsourced money for stolen wheelchairs, and organized virtual check-ins.

Care labor is heavily feminized and racialized, placing an unfair burden on working-class femmes of color. You must watch out for burnout and gendered labor disparities when dreaming care webs.

• What is the goal of your care web? Who needs care? What kind?
• Who’s in it? What are their roles: caregiver, care receiver, both, admin person, fundraiser?
• How are you resisting the charity model in your work?
• What are best practices that allow the people receiving care to receive care well?
• What are best practices that allow the people offering care to offer care well?
• What physical tools do you need to make the access work?
• How will you celebrate and make it fun?
• How will you build in time off and times when people are sick and you need a plan B?
• What meeting structure do you need to check in, talk through issues, and keep things on track?
• Are you building in ways for disabled folks to offer care?
• What’s your plan for dealing with conflict when it happens?
• Are you documenting your work, receipts, or hours?
• Do you have a plan for checking in and making sure funky dynamics aren’t creeping into your care?

2. Crip Emotional Intelligence and Toronto Organizing

Mainstream society views disability as a defect that requires a cure. Crip emotional intelligence rejects this deficiency model entirely. You build communal norms of grace, patience, and deep understanding of trauma.

Disabled communities cultivate crip emotional intelligence and radical accessibility as acts of love.

Kim Katrin Milan created the term femme science to describe femme skills. You can recognize parallel crip skills and sciences developed to navigate ableism. These practices help you survive isolation:

• Do not take it personally when another disabled person is short with you, fumbles for words, or struggles.
• Communicate using smaller or alternative words, writing, or augmented communication devices, waiting patiently for others to finish.
• Never assume anything; always ask what someone calls their body, what they need, and whether they want listening or suggestions.
• Tend to give each other the benefit of the doubt instead of throwing each other away.
• Understand that limits are a negotiation and that people constantly push past their energy spoons to survive.

Toronto Crip City

Toronto has a grassroots history of radical organizing by sick, disabled, Mad, and Deaf queer and trans Black, Indigenous, and people of color. In 2000, an accessible community healing workshop was held at the Parkdale community library, offering free childcare and transit tokens.

Psychiatric Survivor Pride Day was founded in 1993 by Lilith Finkler. Lilith Finkler conducted outreach by greeting community members by name outside the Country Site Café. In 1997, Chinese immigrant and psychiatric survivor Edmond Wai-Hong Yu was shot and killed by police.

Cultural organizing relies on public actions and shared tools:

• Boycott events and parties that lack wheelchair-accessible entrances.
• Contribute to shared spreadsheets and community documents listing accessible venues.
• Utilize access hacks such as removing bathroom doors and hanging curtains, or renting portable accessible toilets.

In January 2013, artist Elisha Lim launched the Why Would I Come to a Party if My Friends are Barred? Facebook action. The event drew nearly 400 participants in its first week and generated crowdsourced lists of accessible venues. A ramp in Toronto cost thirty-five dollars to rent from Shoppers Drug Mart.

Collectives like Performance/Disability/Art create multi-disciplinary spaces for disabled and Mad artists of color. In 2014, the sold-out Crip Your World extravaganza took place at the Mayworks Festival. When invited to perform at an inaccessible newsstand in the Chester subway station, the collective organized a crip arts march from the nearest accessible station.

3. Healing Justice and Crip Sexuality

Healing justice integrates somatic care, collective resilience, and expanded definitions of crip intimacy.

Healing Justice Lineage

The healing justice movement emerged to counter activist burnout, ableism, and the lack of accessible healthcare in oppressed communities. Queer and trans Black, Indigenous, and People of Color created this framework beginning with the Kindred Southern Healing Justice Collective in 2004. This work politicizes healing and reclaims traditional survival methods to deal with intergenerational trauma and systemic exhaustion within social movements.

The Kindred Southern Healing Justice Collective formed formally in 2007 because organizers in New Orleans after Hurricane Katrina were suffering from severe stress, burnout, and trauma.

Social justice movements must integrate healing into their core framework rather than treating it as an afterthought or a spa vacation. Movements often operate on exhausting, crisis-driven paces that exclude sick, disabled, and parenting individuals. Integrating healing justice means building pauses, emotional support, and accessibility directly into organizing work to ensure longevity and prevent burnout.

At the 2010 Detroit United States Social Forum, organizers held a Healing Justice People's Movement Assembly in an old union hall featuring community acupuncture, Reiki, somatics, and counseling. Eight years after the author first encountered the language of healing justice, these practices continue to reshape movement culture.

Healing justice rejects the mainstream medical model that equates disability with brokenness and demands cure as the only goal. Mainstream medical and even alternative wellness spaces often operate on ableist assumptions that disabled and sick people are tragic figures longing to be normal. Anti-ableist healing recognizes disabled bodies as whole, autonomous, and inherently good.

The author shares how her mother, who had polio and lacked money for healthcare, was simply told by a doctor to ride a bicycle.

True liberation relies on collective care rather than privatized self-care that sends individuals away to cope alone. Self-care models often frame burnout as an individual responsibility, telling workers to take a bath and return to the exact same toxic organizational structures. Collective care redesigns organizations to accommodate illness, slowness, and diverse access needs.

Crip Sexuality

Grief and trauma are integral parts of justice work and must be held communally rather than denied or suppressed. Movements fighting systemic violence face constant loss and trauma. Integrating rituals, breath work, and spaces for mourning into organizing helps communities process pain without burning out.

Black Lives Matter organizers have integrated healing justice practices, such as grief rituals over murdered Black kin and herbs for resilience during marches.

Oppressed communities must overcome impostor syndrome to reclaim traditional, working-class, and crip healing practices. Traditional healing methods of people of color and Indigenous communities were historically outlawed or co-opted and sold for profit by mainstream institutions. Reclaiming community healing as a working-class, parenting, or sex-working crip is a revolutionary act.

The author spent ten hours a week on unpaid healing justice organizing in Oakland alongside ten to twenty hours a week spent on her paid practice after she started a WordPress site to read tarot cards for rent money.

Crip sexuality expands traditional ideas of intimacy, bringing together unique bodily realities, humor, and the profound lust of recognition. Disabled and chronically ill individuals navigate unique physical dynamics during intimacy, ranging from logistical challenges like catheters and falling over to deep emotional relief. The lust of recognition occurs when someone is intensely attracted to another person because they recognize their own crip experiences and shared bodily realities in them.

Visual artist E.T. Russian described feeling a powerful, magnetic attraction to another person with a cane because of the shared recognition of navigating disability fifteen years between the time E.T. Russian published their zine Ring of Fire and later collaborated with the author. At the time of the recorded conversation, E.T. Russian had lived with a disability for fourteen years, and the author was twenty-six years old when she re-broke her virginity after years of celibacy.

4. Fair Trade Emotional Labor and Prefigurative Politics

Unpaid emotional and care labor is systematically extracted from femmes, particularly queer, working-class, and disabled femmes of color.

Femmes face an unwritten expectation to provide endless free care, emotional support, and crisis management. This extraction happens without consent or compensation, treated as air or a gendered demand rather than actual skilled labor. For context, the current minimum waitress wage in Massachusetts is 2.66 dollars an hour. Transmisogyny and femmephobia enforce these structural burdens.

In a one-week experiment logging care requests, the author found that femme requesters always checked in on her capacity and offered compensation or grace. Masculine and non-femme friends made unannounced demands without asking about spoons.

Fair Trade Emotional Labor

A fair trade emotional labor economy applies principles of consent, reciprocity, and compensation to care work. Care work must be consensual where requests allow for an honest yes or no. You draw on disabled knowledge where individuals are the bosses of their own bodyminds and reciprocate according to their specific capacities.

Chanelle Gallant commented on a Facebook group about asking strangers who want advice to offer something in exchange, such as a meal, services, or cash.

To build fair trade care webs, you follow specific practices:

• Ask first and be prepared to receive a yes, no, or maybe.
• Figure out and keep figuring out what kind of care and support you can offer as the person providing care.
• Figure out what you need and what you can accept under what circumstances as the person receiving care.
• Negotiate alternatives when a direct request cannot be met.

Prefigurative Performance

Radically accessible performance spaces act as prefigurative politics by building the desired future world in the present.

Traditional higher education arts programs ignore accessibility, treating the audience and venue container as separate from the art. Conversely, disability justice performance curation centers access from the beginning. You turn the audience into an autonomous zone of freedom.

At a Sins Invalid performance, the audience featured a line of chair and scooter users. Deaf and signing folks sat up front, and people managing chemical injuries sat with active enzymes. The tape-off lane standard for accessibility pathways is 36 inches wide, representing a portrait of a fully accessible cross-disability community.

5. Touring Survival, Bedtime Culture, and Femme Suicide

Chronically ill artists must build sustainable touring routines while communities address femme mental health crises.

Touring Hacks and Memoir

You can employ specific practical remedies and routines to manage your symptoms and survive the physical toll of travel. The author developed traveling hacks to handle weak immune systems, dietary changes, inflammation, and fatigue while touring.

• Pound yin chiao (three to four pills, three times a day) at the first sign of feeling sick.
• Use hot sea salt gargles to stop bacteria from going into your lungs.
• Take melatonin to sleep across different time zones.
• Take activated charcoal to absorb gas and badness from irregular food.
• Take 800 milligrams of ibuprofen (four 200 mg pills) every four hours to reduce inflammation, or substitute with turmeric.
• Put a big scarf over your face to block out the world or cold air.
• Carry emergency protein such as wild canned salmon.
• Pack a kale salad that holds up for at least two days unrefrigerated in a Tupperware.
• Make lemon water using a mason jar filled with water after clearing airport security.
• Bring nettles and various tea bags for steady energy and vitamins.
• Roll up a heating pad and take it with you.
• Give yourself days off in the middle of weeks on the road or plan total rest afterward.
• Look up community acupuncture spots on pocacoop.com.
• Make use of the YMCA AWAY program to access facilities and hot tubs for free.
• Get dip powder, gels, or acrylics to keep hands durable and feel in control.
• Bring powdered, fragrance-free laundry detergent in a ziplock.
• Pack coffee, filters, or tea in a ziplock.
• Bring a portable altar in a ziplock to set up where you stay.
• Borrow a totally escapist library book and have a script to excuse yourself for alone time.
• Bring a cheap folding cane and ask for pre-boarding or wheelchair assistance at airports.
• Ask people you stay with for specific access needs like smoke-free rooms and heat.
• Look for hotels with a hot water dispenser, mini fridge, and microwave.
• Ask hotels in advance to use fragrance-free cleansers and remove air fresheners.
• Bring cute cotton underwear instead of nylon to prevent candida issues.
• Use menstrual sponges, cups, or cloth pads.
• Keep the option to cancel or reschedule in your back pocket for severe mental health crises or illness.
• Limit yourself to one or two things a day when booking gigs.
• Build access requests into your gigs as a normal standard rather than special diva requests.

The author spent ten years working on Dirty River: A Queer Femme of Color Dreaming Her Way Home. You juggle low-paid jobs like working for 12 dollars an hour at Modern Times Bookstore.

Gloria Anzaldúa managed severe fibroid pain, diabetes, and physical differences. She experienced monthly 104-degree fevers and dedicated her life to writing in 1979 before passing away at age 61.

Femme Suicide and Boundaries

Queer femmes, disabled femmes, and femmes of color face a devastating crisis of suicide and chronic mental distress driven by systemic ableism and the heavy toll of continuous emotional labor.

The author lost five people to suicide over three years. This included fourteen-year-old Jerika Bolen, who announced her planned suicide.

Organizers created online webinars called femminars with four hundred sign-ups in their first week. Participants pooled practical survival tactics:

• Meds
• Netflix
• therapy
• prayer
• herbs
• change breakups
• fresh nails
• praying to the ancestors
• breaking bottles
• finding a friend you can be crazy with
• shutting down social media
• reaching out on social media groups that felt safe
• crying baths
• all the crystals
• shit talk

You face unrealistic 1,000 percent expectations of availability while living on a maximum monthly income of 1,200 dollars. You can protect your heart by building distinct boundaries.

• Build in boundaries
• Accept imperfection
• Build relationships where you are loved not just for your labor
• Say no to being everyone's mommy
• Do not reply to everyone's email instantaneously
• Build relationships with the expectation that you both will make mistakes and you get to make amends and repair
• Give yourself some cover if someone comes shooting instead of handing them your heart

Conclusion

Care webs, collective access, and boundaries unite to dismantle ableism by replacing state violence and capitalist isolation with interdependent support. You can build this world by practicing disability justice in your daily relationships and spaces.

1. Reject independence myths and build interdependent care webs that share labor across communities.
2. Design meetings, events, and homes with radical accessibility by default rather than as an afterthought.
3. Cultivate crip emotional intelligence to handle burnout, conflict, and access needs with grace.
4. Set clear boundaries and practice fair trade emotional labor to protect marginalized caregivers.
5. Center queer, trans, Black, and Indigenous disabled leaders at the forefront of every political struggle.

10 Key Ideas

1. Disability Justice centers marginalized QTBIPOC and rejects state surveillance through grassroots care webs.
2. Sick and disabled communities build interdependent care webs to meet their needs autonomously.
3. Disabled communities cultivate crip emotional intelligence and radical accessibility as acts of love.
4. Healing justice integrates somatic care, collective resilience, and expanded definitions of crip intimacy.
5. Crip sexuality expands traditional ideas of intimacy, bringing together unique bodily realities, humor, and the profound lust of recognition.
6. Unpaid emotional and care labor is systematically extracted from femmes, particularly queer, working-class, and disabled femmes of color.
7. A fair trade emotional labor economy applies principles of consent, reciprocity, and compensation to care work.
8. Radically accessible performance spaces act as prefigurative politics by building the desired future world in the present.
9. Chronically ill artists must build sustainable touring routines while communities address femme mental health crises.
10. Queer femmes, disabled femmes, and femmes of color face a devastating crisis of suicide and chronic mental distress driven by systemic ableism and the heavy toll of continuous emotional labor.