Reviewed by Kathleen Champlin
Content Warning: Racism
Piepzna-Samarasinha offers us a powerful vision of an inclusive future and a road map toward reaching that future. This road map is especially important now that political events and human-made natural disasters have left so many of us in despair.
The author’s descriptions of truly inclusive performance events are especially memorable. For example, Piepzna-Samarasinha describes a performance by Sins Invalid, a disability justice performance collective. They particularly mention the expanded schedule of 2-3 performers a night:
People had ample, luxurious space to go to the bathroom with an attendant, to go outside and vape, to sit quietly and take a sensory break, to take longer to get back to their seat than they thought they’d need.
Piepzna-Samarasinha goes on to describe an inviting sensory room, and captions, ASL interpretation, and audio descriptions of visual content that were integral parts of the performance. Several rows of seats in the audience were beds for those who could not easily sit upright for the whole performance, and ushers were trained to reseat those wearing strong scents for the benefit of those with chemical sensitivities. Best of all, as Piepzna-Samarasinha recounts, the performance ended with a dance party:
Most of all, IWBWYE was pure disabled joy. In Herman’s disabled dance jam at the end, the slow way more and more disabled people took up space. Dragged chairs onto the dance floor and danced in them. Disrupting the binary wall of who was dancer/performer and who wasn’t. Taking up space, grooving together.
This is the world many are working toward, a world where many forms of difference exist together in harmony and beauty, where accommodations are treated as a matter of course, and where binary walls do not exist. The scene is equally important because it provides a vivid reminder of what disabled people are allowed to want, both in terms of access and in terms of real enjoyment. Because of my deafness, I’ve become used to making do with YouTube’s automatic captions (rightfully called “craptions” by one activist) and with the knowledge that I simply cannot attend live performances. I suspect that this is not an uncommon experience; many other members of the disabled community are probably used to rationing their wants and lowering their expectations. Within that context, “radical disabled dreaming” is a form of resistance; Piepzna-Samarasinha’s new book, as with so much of their other work, provides us with an invitation to dream boldly.
As a direct contrast to this inclusive dreaming, Piepzna-Samarasinha also describes the world outside of our safe(r) spaces: a world of raging pandemics, natural disasters caused by human action, and terrifying political ethics – a world where being who you are means accepting that you may be murdered by police or by paramilitary fascists. Piepzna-Samarasinha contends that the human race will not survive our present or immediate future without skills developed in the disabled community. As the author puts it:
If this life often feels like the apocalyptic science fiction novels…we – disabled people – are the heroes, surviving it and teaching others to survive it. We are the ones who know, more than anyone, the technology of how to actually care.
As Piepzna-Samarasinha points out, the disabled community responded to recent crises with strength and compassion. Disabled individuals provided masks during COVID, organized generator distribution during state-planned blackouts in California and created tutorials on making at-home air filters as wildfires raged on the west coast. Members of the disabled community provided guidelines for safety during the Covid-19 pandemic and demanded vaccine equality through organized activism. Such strength and compassion kept many people alive even in utter disaster. Similar strengths and acts of compassion will be needed in the future.
For this reason, Piepzna-Samarasinha fills her work with models of reciprocal care and guideposts for future organization. The author draws from her workshops on care circles, from definitions of interdependence, and on experiences with the Disability Justice (DJ) movement in order to share her wisdom with a wider audience. Among other highlights, the book includes a tutorial on identifying a personal support network and guidelines for troubleshooting disability group meetings. The latter is important as internalized ableism and other inequalities can cause conflict within the crip community.
Piepzna-Samarasinha also peppers their work with informal models of reciprocal care including checking on those who may be ill, dropping off sandwiches to silently show support, or communicating love and mutual understanding, with examples such as:
Hey do you need anything from the grocery store, I’m going?
Are there things that would feel supportive?
Or
I need to take a break from texting / have non-verbal time right now
Many members of Disability Justice organizations will be thrilled to notice their care and organization skills recognized and underscored in this book. Other individuals and organizations will perhaps perceive the strongly recommended guidelines that they must follow in order to survive and thrive. As Piepzna-Samarasinha notes, it is far too easy for large or widely recognized organizations to fall into the us/them abled-savior models promoted through public services. Such “care” generally harms instead of helping by ceaselessly policing services and taking away autonomy from those who most need advocates. In contrast, as Piepzna-Samarasinha shows us, good reciprocal care is founded on trust in disabled people, privileges autonomy, focuses on individual needs, and accepts the need for evolving care/access strategies.
All in all, this insightful work is a love-letter to the disabled community: the book is a tribute to our strength, our creativity, and our ability to provide support without policing or barriers. In chapters on grief work, Piepzna-Samarasinha provides an elegy for those who are no longer here and an ongoing record of the legal and medical neglect that prematurely ended and continues to end disabled lives. The author’s visions of wild disabled joy and collaborative care point toward what we can become. As Piepzna-Samarasinha tells us, the future is disabled – and the world will have to change radically in order to make possible and embrace this future.
Title: The Future is Disabled: Prophecies, Love Notes, and Mourning Songs
Author: Leah Lakshmi Piepzna-Samarasinha
Publisher: Arsenal Pulp Press
Date: 2022
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About the Reviewer
Kate Champlin (she/her) is a late-deafened adult and a graduate of Ball State University (Indiana). She currently works as a writing tutor and as a contract worker for BK International Education Consultancy, a company whose aim is to normalize the success of underserved students.