Updated: Jun 18, 2020
I am launching this website as a point of connection and as a resource for anyone currently engaging in or are interested in learning more about care collectives. I understand collective care broadly as the work performed by informal collectives within and between marginalized communities committed to meeting the interdependent care needs of community members. Care collectives endeavour to enact key principles of disability justice and ensure the well-being and flourishing of disabled people. Care collectives provide both practical mutual aid/support and generate nourishing, sustainable, interdependent community-based alternatives. I work to acknowledge and honour indigenous knowledge, practices and guidance in theorizing and organizing around interdependence, relationality and care.
This initial post introduces a brief beginning vision for this website and shares some of my personal experience with collective care. I will be following this post with a post sharing some of my current context and analysis regarding collective care. This follow-up post shares a bit more information about disability justice, why we need care collectives or what care collectives arise in response to, some of the influences in my current thinking about collective care, and various historic and contemporary examples that I recognize as expansive resources for how we organize to take care of each other.
Caring in Covid Times
Before I continue with this introduction, I feel it is necessary to acknowledge that I started writing this introductory blog post long before we were launched into a global pandemic that has particularly terrifying and tangible implications for marginalized communities. This crisis highlights existing systemic inequalities in all aspects of social organization seen in the disparate impacts on Black and Indigenous communities. Additionally, the high death and infection rates in prisons and long term care draw attention to the pre-existing violence of institutional systems organized around control, containment and disposability. I am recognizing and witnessing many points of dissonance and resonance. This is definitely a time that both complicates and amplifies the need for, as well as the practices and skills of, collective care. Not only do we need to share and imagine strategies outside of policing for keeping communities safe, we need more community-based alternatives for supporting people experiencing distress, isolation and sickness. On the individual level, I had to rework how my care collective is structured in order to balance the contradictory needs of minimizing my exposure risks with a sustainable care practice that acknowledges everyone’s access needs. This is also a time filled with potential around expanding and reimagining collective care responses. I am not going to take this up in this blog post, but I will be posting a Covid collective care post in the near future. This visioning and organizing is happening. Disability justice perspectives that centre the leadership of QT/BIPOC (Queer and Trans, and/or Black, Indigenous, and People of Colour) disabled people need to be listened to and central in this process of collective struggle and survival.
A Vision for this Website
This website will serve as a place where we get to try things out and put into practice transformative love and collective access. Finding information and resources on collective care is hard. There are one-off blog posts, or sections in larger compilations/books, or recruitment posts floating around Facebook, but there are no places where the various threads related to collective care are brought together. I envision this website as a place to share resources, struggles and stories; a site where we get to share the strategies, successes, and challenges of enacting disability justice through collective care. There are specific details about what this website offers later in this post.
Loree’s Care Collective – A brief summary
For the past 20 years, I have been meeting all of my daily care needs by means of a care collective, made up of lovely people from various communities of which I am a part. My care needs include things like getting out of bed, going to the bathroom, organizing my sparkly things, taking care of my sweet and strange cat, making food, and so on. I will write a post sharing the detailed story of my care collective/s later, but I want this to be a website for everyone engaging in collective care in various ways. I don’t want this just to be a website about Loree’s care collective. For now, to give some context, I will share just a brief summary.
I started my first care collective in Richmond, Virginia, in 1999. Like with many other care collectives, mine came about because of inadequate state support and systemic oppression. In my case, it was the combination of inadequate state funding/support alongside dealing with the homophobia and disableism of various agency-provided care attendants. The culminating moment came when, after nearly two years of fighting with a social worker from the Department of Rehab Services to keep the amount of attendant care support I was getting, they finally cut my services. I was thereafter expected to meet all my care needs within an impossible six hours per day, and the max pay rate was $6 an hour. This amounted to a whopping $36 a day before taxes to meet all my care needs. I could not survive in these care conditions. So a group of friends and I had a meeting and strategized. The care collective started with a few of my close friends volunteering so that I could clump my hours together. This care collective eventually grew to involve other members of the activist community in Richmond when Queer Paradise, the queer collective house and community space where we were living, was condemned. Several years later, I moved to Toronto for graduate school and moved into a collective house with a group of fabulous people I had met at conferences. As I was a US citizen here on a student visa, I was not eligible for any funding for care support, and thus my Canadian care collective formed.
I share this brief introduction to how and why my care collectives started because I know that I am not alone these experiences. Over the years—as I do have a very public and long-running care collective—many people have gotten in touch with me, seeking advice and guidance on how to start their own care collectives. From these conversations, I noticed a repeated pattern of people turning to collective care because of the many ways they had been excluded from accessing adequate and respectful care support.
On this website, for example, I want us to spend time thinking about what we can learn from various moments and examples where marginalized communities have come together to take care of each other. I want us to share in learning more about the complex interrelation between care and intimacy by spending time with articles, people and artwork sharing:
· Experiences from the care communities arising around individuals with HIV/AIDS (Chambré 1991, Fink 2013, Vider 2019, Roach 2012, Stepic 2017).
· Care teams arising around gender affirming surgeries, and beyond.
· How care is a part of intimacy building and how intimacy is central to care.
· What we learn when we look to projects like:
o STAR (Street Transvestite Action Revolutionaries) House, started in 1970 by Marcia P Johnson and Sylvia Rivera (also check out One from the Vaults – a podcast by Morgan M. Page;
o “Grandma’s house,” a space in Vancouver, BC that was started by Jamie Lee Hamilton;
o Houses formed around Ball culture, starting during the 80s and continuing into today (Bailey 2013, Wong et al. 2014).
In each of these examples and countless others, marginalized communities come together to create housing, mentorship, provide care, safety and community. They also hold information about what barriers and issues give rise to collective care as well as act as guidebooks, with necessary strategies and resources for building our own care models.
What will this website look like as it grows and changes?
I have designed this website around providing access to resources and community. This website has been designed by someone with very little website building expertise. Accessibility and collaboration are at the core of everything I do, and I have tried to make this website accessible and easy to interact with. However, as I am very new to all of this, I am bound to make some mistakes. If you encounter any problems with using this website, please do get in touch with me at firstname.lastname@example.org
Below is an introduction to the different features of this website.
There will be blog articles, like this one, written by me or other people engaged in various practices of collective care or community-based care work. I am thinking of things like the examples listed above as well as unfunded harm reduction projects, general mutual aid projects, or suicide intervention workshops led by community members for community members.
I have created 5 forums that will hopefully grow in numbers as members and visitors suggest needed forum categories. Currently there is a forum called Tips and Tricks for sharing resources, practical tools and links to support folks engaged in collective care. We can share what apps or programs we use to manage our care collectives. We can upload sample recruitment posts, calendar templates, and such. There is also a form called Questions and Quandaries. I envision this space as a place to ask questions if you’re new to collective care. I also wanted to create a space where we can share frustrations and limitations of care collectives so that we can craft solutions. I have also included a forum that acts as a glossary for some of the terms and concepts central to collective care. I will be adding to this as well as I hope community members share their thoughts about terminology and concepts. I want us to stretch our ideas and practices of care together. To this end, in addition to a forum to discuss care broadly both practically and conceptually, called Care Conversation Corner, there will be a space to support the art of collective care. Memes and pictures, videos and poetry. I am still trying to work out how this can be collaboratively curated. There is also a forum that is just a space to introduce yourself and say hello. This website also has a chat feature so that folks engaged in collective care can talk with each other and support each other directly.
Let’s Dream Together!
I started this website to address the absence of readily available material and because I think there is a lot of important knowledge and resources that we can and need to share with each other. Right now, this website needs you! As this post marks the very beginning of this project, it is pretty bare. Please post in the forums, get in touch if you want to collaborate on a blog post or submit your own, and send me your art. Let’s dream together how building our own care models, like care collectives, help us transform our world and thrive both as individuals and as communities.
Bailey, Marlon M. 2013. Butch Queens up in Pumps: Gender, Performance, and Ballroom Culture in Detroit. Book, Whole. Ann Arbor: University of Michigan Press. https://doi.org/10.3998/mpub.799908.
Chambré, Susan M. 1991. “The Volunteer Response to the AIDS Epidemic in New York City: Implications for Research on Voluntarism.” Nonprofit and Voluntary Sector Quarterly 20 (3): 267–87.
Fink, Marty, Alexandra Juhasz, David Oscar Harvey, and Bishnupriya Gosh. 2013. “Ghost Stories.” Jump Cut: A Review of Contemporary Media 55.
Roach, Tom. 2012. Friendship As a Way of Life:Foucault, AIDS, and the Politics of Shared Estrangement. Albany, NY: State University of New York Press.
Stepic, Nikola. 2017. “AIDS, Caregiving and Kinship: The Queer ‘Family’ in Bill Sherwood’s Parting Glances.” European Journal of American Studies 11 (3).
Vider, Stephen. 2019. “Public Disclosures of Private Realities: HIV/AIDS and the Domestic Archive.” The Public Historian 41 (2): 163–89. https://doi.org/10.1525/tph.2019.41.2.163.
Wong, Carolyn F., Sheree M. Schrager, Ian W. Holloway, Ilan H. Meyer, and Michele D. Kipke. 2014. “Minority Stress Experiences and Psychological Well-Being: The Impact of Support from and Connection to Social Networks within the Los Angeles House and Ball Communities.” Prevention Science 15 (1): 44–55.