By While important conversations on how socio-political factors imbue the funerary fields and landscapes of death care have been more and more prevalent over the last half a decade, how disability plays into end-of-life care has been largely sorely neglected. Not only does this result in ableism from a provider-to-care-recipient stand point, but it also manifests itself in the treatment of death care workers from their peers and even their clients.
Where disability inclusion would be obviously helpful, Disability Justice is even more important. While Disability Justice does not explicitly reference end-of-life, this framework is vital if we are to create equitable, radical, and competent support in death and grief work.
Disability Justice’s multi-faceted approach can provide death care with the necessary tools to reckon with the complex and overlapping issues and influences faced at end-of-life: including race, disposability, environmental justice, respecting cultural differences, and more.
What Death Care Can Learn From Disability Justice
What is Disability Justice?
Disability Justice refers to a specific and intentional framework of thinking about disability with particular emphasis on intersectionality and centering the needs, priorities, and approaches of those most historically excluded groups (such as people from the Global South, Indigenous people, women, people of color, immigrants, and LGBTQ+ individuals). Additionally, Disability Justice emphasizes centering the needs of disabled people as whole people.
As the Disability Activist Collective offers:
Disability Justice is the cross-disability (sensory, intellectual, mental health/psychiatric, neurodiversity, physical/mobility, learning, etc.) framework that values access, self-determination, and an expectation of difference. An expectation of difference means that we expect difference in disability, identity, and culture. To be included and part of society is about being able to be our ‘whole self’ (all of our identities together).
Whereas disability inclusion works to include disabled people in pre-existing structures, Disability Justice rebuilds and weaves new malleable structures that are sensitive to varying needs.
What are the 10 Principles of Disability Justice?
Image via Wikicommons
Disability Justice is most easily explained by examining its ten guiding principles. Disability justice group, Sins Invalid, defines these as:
- Intersectionality: “We do not live single issue lives” –Audre Lorde. Ableism, coupled with white supremacy, supported by capitalism, underscored by heteropatriarchy, has rendered the vast majority of the world “invalid.”
- Leadership of those most impacted: “We are led by those who most know these systems.” –Aurora Levins Morales
- Anti-capitalist politic: In an economy that sees land and humans as components of profit, we are anti-capitalist by the nature of having non-conforming body/minds.
- Commitment to cross-movement organizing: Shifting how social justice movements understand disability and contextualize ableism, disability justice lends itself to politics of alliance.
- Recognizing wholeness: People have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience.
- Sustainability: We pace ourselves, individually and collectively, to be sustained long term. Our embodied experiences guide us toward ongoing justice and liberation.
- Commitment to cross-disability solidarity: We honor the insights and participation of all of our community members, knowing that isolation undermines collective liberation.
- Interdependence: We meet each others’ needs as we build toward liberation, knowing that state solutions inevitably extend into further control over lives.
- Collective access: As brown, black and queer-bodied disabled people we bring flexibility and creative nuance that go beyond able-bodied/minded normativity, to be in community with each other.
- Collective liberation: No body or mind can be left behind – only moving together can we accomplish the revolution we require.
The kaleidoscopic framework fostered by Disability Justice influences our relationships with ourselves, each other, and our collective resources and governing bodies. As the Disability Activist Collective shares:
Disability Justice framework is practiced on an individual, cultural and societal level. It asks us to be responsible for both what we do to make change and how we go about doing the work to make it. The focus expanding from educating and advocacy around systems and attitudes, to working with other oppressed groups educating ourselves and creating solutions and community power that can serve everyone.
While Disability Justice does not explicitly reference end-of-life, this framework is vital if we are to create equitable, radical, and competent webs of care and support in death and grief work.
What can death care learn from Disability Justice?
Haadia Khan Art for Disabled And Here
Disability Justice is particularly urgent in end-of-life care, as death can coincide with disability. Death does not happen within a political and cultural vacuum and as death care workers, we can use the wisdom, tools, and guidance provided by Disability Justice to create a more just, equitable, and serving field of end-of-life care for all involved.
Disability Justice reminds us of the importance of recognizing our own and each other’s wholeness- this can include but is not limited to understanding that someone is a full person with needs, wants, agency, and memories and that they are not limited to their role as a caretaker or dying person. Likewise, Disability Justice highlights there is no ‘one size fits all’ for approaches and needs at end-of-life: difference is to be expected.
the ways in which we die are greatly impacted by the ways in which we live
Disability Justice reminds us that where, how, and when someone dies is not in a political vacuum divorced from socio-political factors. For example, who experiences a ‘good’ or ‘bad’ death is inseparable from state-sanctioned violence.
When advocating for autonomy in end-of-life, such as access to MAiD, Disability Justice requires us to be aware of how MAiD can be a eugenicist tool as well- as we see in Canada, and fight for Disability rights in equal measure.
Importantly, Disability Justice is anchored in cross movement liberation. For example, there is no Disability Justice without anti-racism, and there can be no Disability Justice without trans-liberation. While the tongue in cheek phrase “all men are cremated equally” might be as popular as the saying “death is the great equalizer” the ways in which we die are greatly impacted by the ways in which we live, all societal and cultural forces drive what it means for a person to die.
Death care has always belonged to communities rather than corporations. Braiding in the pillars of Disability Justice tasks us not only for organizing for rights that impact death and the ways in which we die, but also examining the fabrics of our communities, challenging ourselves to reflect and adapt, and live these values in both life and death.
Further reading:
- Skin, Tooth, and Bone by Sins Invalid
- Black Disability Politics by Sami Schalk
- Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha
- Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong
- The Cancer Journals by Audre Lorde
- Rebellious Mourning: The Collective Work of Grief edited by Cindy Milstein
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