Futures generated by the Assembly
The Last Disabled Oracle
August 6, 2020
Assembly for the Future
Welcome everyone! It’s 4:15 pm Pacific time in California and I’d like to call to order the December meeting of the Disabled Oracles Society, North American chapter.
Screen share off. While people are joining both online and in person, please help yourselves to some drinks and snacks in the back. Louise brought some Tim Tams back from her visit to Melbourne attending the Australian chapter’s annual meeting last month. Please remember we have people participating online, on the phone, and through an all new platform, beep boop beep. Be sure to follow the various streams from your device throughout our meeting today.
Since it’s December and we’re about to embark upon another decade in the 21st century, let’s take some time to review the major issues and challenges we faced as disabled oracles. Established in December 2020, these nine years have been difficult with the coronavirus, the phage in 2024, and the increasing changes in weather patterns and global migration in the last five years. All of these crises have disproportionately impacted marginalized people, especially communities of color and indigenous, poor, older, and disabled people.
The planet is literally more hostile to people like us and yet the greatest existential threat we face is from other humans who believe congenital disabilities are something to be fixed and eliminated through gene therapy and human gene editing, also known as HGE.
Eugenics has always been with us but in the next 10-15 years we know HGE will be commercially available since the press conference this past August by McEdit, a multinational corporation planning to provide high-end boutique services for people who want to give their future generations the best chance at life. They didn’t announce the date of their launch but reports say it’s likely to take place 2030 or 2031 at the very latest. The fact that there was such fanfare and little opposition to McEdit means we have a lot of work ahead of us as disabled oracles.
What does the advent of McEdit mean for us? How do we, imperfectly perfect creatures, argue against these seductive narratives about being better, stronger, healthier? How do we address the very real ethical implications behind this technology?
Before we have a discussion on what to do next, let’s go back and review some basics. This may be useful for some of the newer members.
Many years ago the Center for Genetics and Society described human genetic modification as “…the direct manipulation of the genome using molecular engineering techniques.” This is often referred to as human gene editing, or HGE.
There are two types of modification: somatic and germline. We are focused on germline modification because it would change the genes in eggs, sperm, or early embryos. This means subsequent generations would also carry those changes.
CRISPR-Cas9 is one gene editing tool that became popular because it’s fast, cheap, and accurate. CRISPR was used in 2018 by He Jiankui, a researcher who announced at an international conference that he produced genetically edited babies in an attempt to make them resistant to HIV. He was sentenced to 3 years in prison for illegal medical practices in 2019.
At that time germline modification was a red flag for ethical reasons but it wasn’t banned or regulated in every country. Over the years tools such as CRISPR became more sophisticated and slowly opposition to the unknown consequences died down. Excitement around the science and possibilities of eliminating disease outweighed any questions about the underlying assumptions about health, disability, and difference. The idea of giving babies an advantage whether it’s less likelihood of developing a disease or enhancing other traits was irresistible to people with the means to give their kids quote unquote the best. The best, meaning a life without a disability. And this is why McEdit and its other competitors are on the horizon for commercial and undoubtedly militaristic purposes.
The Disabled Oracle Society began in 2020 in the midst of the coronavirus pandemic when sick and disabled people sounded the alarm about the importance of wearing masks, the value of accessibility, and the interdependence of all communities. It became very clear who was considered disposable and who was not as institutions and governments developed medical triage guidelines. The casual ableism, racism, and ageism went unchecked in debates around restarting the economy with the terms such as ‘acceptable losses’ and ‘high risk’ as if those lives weren’t worth living or saving.
I know Twitter doesn’t exist anymore, but here’s an antique Tweet from March 18, 2020 where I said disabled people are modern day oracles in response to a Tweet by Emily Johnson who wrote, “We need to talk about how US states have legalized murdering disabled and chronically ill people by taking them off critical equipment they already had or denying care should they be moved outside their home or facility care situations. And how providers justify this.”
The actual catalyst to the formation of the Disabled Oracle Society came from an article in July of that year from the New York Times as part of a series of stories marking the 30th anniversary of the Americans with Disabilities Act, a civil rights law for disabled people. An article by Katie Hafner titled, “Once Science Fiction, Gene Editing Is Now a Looming Reality” featured several parents of disabled children, scientists, and bioethicists. And only ONE person with a disability.
My friend and fellow oracle Rebecca Cokely Tweeted: “Hey @nytimes how DARE you have a writer who doesn’t identify as DISABLED write about what CRISPR means for OUR community as part of your #ADA30 spread?!?! Your ableism really knows NO bounds.”
When I saw that, something in me snapped. Here we are, disabled oracles since the beginning of time warning society and telling our truths, and being completely sidelined once again. This is nothing new or unique. Throughout history marginalized, troublesome, undesirable people are not believed or taken seriously. We elicit discomfort and disrupt people’s binary ideas of normalcy. Our warnings have been silenced in order to uphold the status quo. Even when we make persuasive arguments, we are not at the center, despite our extensive scholarship and wisdom. For instance, I interviewed Dr. Jaipreet Virdi in August 2020 about her book, Hearing Happiness: Deafness Cures in History, and she said this about the future of cures such as human gene editing.
“There is no guarantee that genetic engineering will eradicate hereditary deafness nor any certainty that it will not cause any further complications. Moreover, this is essentially at the core, a form of cultural genocide…to argue that this needs to be ‘avoided’ at the level of genetics is an affront to generations of Deaf people who do not perceive themselves to be genetic defects.”
That was a brief overview of our origins and I share this because the mission remains constant: We tell our stories and truths in our own words. We define who we are and our place in the world. We fight to be seen and heard. We live in defiance with joy and radical acceptance.
You voted me as the President of the Disabled Oracle Society this year and I take this responsibility seriously. Friends, I too am tired of defending my worth everyday to people obsessed with having everything faster, shinier, newer. We try to reach people where they are, engaging in a number of creative ways. We assert the danger and uncertainty to future generations with altered genomes and how it will impact the entire human race. We repeat our main talking points all the time–that all people have worth, that no person should be left behind, that technology is never neutral. We also try to point out how technology reinforces white supremacy, ableism, and all forms of structural inequality. This is not new with too many tragic examples to list.
What else can we do? How do we love and hold each other up so we keep on going as a community? How can we harness our imagination to create the world we want to live in right now and in the future?
At this time, I’d like to open it up for discussion and questions. Let me see, [Alice plays audio] “Hi, I’m Emily from New York City. What is the role of a disabled oracle?
Thanks, Emily. It’s totally up to you. What are you comfortable talking about? Just living your best life is a form of resistance. As I mentioned earlier, I don’t have the answers or even a strategy yet on how to engage with McEdit and the millions who will become their customers. But I’m good at asking questions. I’m good at telling my personal story within a larger political context. In asking questions, I want people to consider other perspectives and why germline human gene editing is incredibly troubling and problematic for so many communities, not just disabled people.
Since we’re almost out of time, here’s one final question: [Alice plays audio] “Hi, I’m Grace from Tempe, Arizona, longtime disabled oracle. I’m scared. What is the point of doing all of this if we’re going to become extinct?
Thanks, Grace. I’m really scared too. Things feel overwhelming and impossible everyday. Just know that you have a choice on how much you want to do. I believe everyone has the capacity to change the world while we are still alive in big and small ways.
I’m reminded of this Tweet from 2017 by Dr. Ruha Benjamin, a sociologist and author of Race After Technology: Abolitionist Tools for the New Jim Code, “remember to imagine and craft the worlds you cannot live without, just as you dismantle the ones you cannot live within.”
As disabled oracles, we continue to build and create on the knowledge and dreams of our ancestors. They left their mark on the planet as will we. After we’re long gone, we will show up in other ways. Someone will see and discover us and we’ll be speaking with them from the past.
I don’t know if this helps, but think about the ancestors that mean something to you. Connect with the people close to you right now and the stories passed down by your elders. Know that we are in this together collectively and that our brilliance as oracles will not be denied. I call upon the power and wisdom of my disabled ancestors such as Stella Young, Carrie Ann Lucas, Ki‘tay Davidson, Ing Wong-Ward, Harriet McBryde Johnson and Stacey Park Milbern. I have my memories and their words to guide me. And I hope this bit of advice brings you comfort because we should embrace every single moment while we can.
In closing, let’s read the motto of the Disabled Oracle Society: We are the past. We are the present. We are the future. We are forever.
See you all in 2030, meeting adjourned.
CONTENT WARNING - Please note some of the Assembly for the Future written works contain references to ableism and may not suitable for younger readers.
Content Warning – Please note this work contains reference to ableism.
Future generated by Mali, Jodee, John, Tal, Lara and El
An audience with the Disabled Oracle: edited notes on an address to the ‘reforming able-bodied males’ syndicate (Meeting 2, October 2029).
Like you, friends, I am feeling broken. The devastation that we now live with on a daily basis was forewarned— the heat, the disaster, the deaths. And it sits upon our shoulders, the white able-bodied male to explain why our forefathers and indeed, some of us in this very room, could have willingly perpetuated this culture of death. You will remember in our prior meeting that the conversation turned to the ancient Greek archetype of Cassandra. To summarise: she was a gifted oracle whose prophecies were never believed; such an archetype warned us for a century through the many activist voices that tried to attract our attention, of the devastation now upon us. Our dismissive Apollonian attitudes, which we now recognise as economic determinism masquerading as reason, has brought us to this terrible place. Our syndicate has dedicated its energies to the rebuilding of a new society, starting with our own transformation.
We share a charter that seeks to define a new man, not by normative definition, but one in which each person might know the possibilities of their becoming. And this begins with the undoing and recreation of ourselves. In this effort, as promised in our first meeting, I have visited the Disabled Oracle. Today, I share with you my experiences.
The Disabled Oracle, as we know, has become a society-wide transformative surge, helping us to let go of long-held attitudes. An audience with the Disabled Oracle is both tender and strong; perhaps it is the tone of her voice, or the atmosphere she produces, or simply the wisdom of her words, but I experienced what others have described – an immediate connection with pain. An introspection; a wondering. Why have I believed the things I have; why have I allowed the outward face of society to crush the creative perturbations of my being; how have I so easily been forced into a homogenized countenance?
Since, I have further reflected on this encounter. It seems to me that the pain of normalcy is the mental fatigue created by our perpetual psychic offerings, towards the preservation of cultural norms. An exertion concomitant with pain. A pain of which the Disabled Oracle is somehow able to put us in touch. The pain of my own exhaustion was revealed to me through tears, echoed by others around me. I experienced a cascade of memories: being accused of not being normal, of not being a man, of not fitting in; the possibilities of my own sensitivities and potential disabled by a society intent on producing a certain type of human figure…
Let’s turn for a moment to the historical archetype who best symbolises this human figure: Vitruvian man. He who so willingly bound himself to two geometrical figures—the circle of progress and the square of certainty. Suspended within these abstractions the Vitruvian man gazes at us through his long flowing hair and powerful physique; strong and steady – so, perfect. And yet, he is bound and immobile. Unable to move, he could never descend from his podium to meet the oracle. Rather he would glare at her from afar, asking why she isn’t he. The demand for normalcy would disable her potential, and it is this force which our syndicate, like the others, must become active in disassembling.
It is interesting to consider that the prefix dis-, can mean reversal. The Disabled Oracle can reverse the exterior gaze of Vitruvian man to one of inner reflection; it is this disabling of certainty and the enabling of empathy and understanding that is so crucial to our time. Experiencing this pain taught me that each of us pays a significant mental cost for the prize of being considered normal and/or perfect. How can we men undo ourselves, our certainty and commitment? How can we allow our energies to become unbound and float outwards, towards new possibilities? That we might come to enrich our understanding of the world and be a part of a diversity of becomings – where there is no male any longer, but only expressions of respectful strength – stable, open and gentle…
The Disabled Oracle gave me a chance to see what lay behind my pain: the power to transform. This has somehow given my own creative energies permission to expand beyond the bindings of normative codes. I believe it is the dispelling of perfection, and its concomitant pressures to act normally, that is crucial for the becoming of the new world to which our syndicate has committed.
Friends, thank you for listening. Together, let us continue our syndicate’s journey towards dis-perfection…
Future generated by Elizabeth D, Ana, Elizabeth R, David and Jordan.
Like a chorus of seasonal blooms, underground hackers linked to collectivist hacktivist group, Anonymous, and to the Disabled Oracle Society orchestrated a digital thunderclap across all digital platforms, screens and monitors on earth.
Enough screenshots of the message – a poem, a plea – occurred before authorities could force a blackout. Their message was clear
Future generated by Samantha, Melanie, Natalie, Leanne, Samira and Huong.
Written and created by Huong Truong.
The New Sun Times
August 12, 2029
THE DONUT SWALLOWS THE HOLE
By Tim Baker
We tell our stories and truths in our own words. We define who we are and our place in the world. We fight to be seen and heard. We live in defiance with joy and radical acceptance. I too am tired of defending my worth every day to people obsessed with having everything faster, shinier, newer. What can we do? How do we love and hold each other up so we keep on going as a community? How can we harness our imagination to create a world that we want to live in right and in the future?
Alice Wong, Assembly For the Future, July 6th, 2020.
In 2020, then Disability Justice advocate Alice Wong engaged in a little creative time travel and delivered a stirring warning to humanity from the year 2029. Proclaiming herself The Last Disabled Oracle, she spoke at the inaugural Assembly for the Future, in the midst of the COVID-19 pandemic, and painted a chilling picture of the path gene editing and a misguided quest to “perfect” humankind would take us on. That landmark speech set in train a series of events that ultimately led to the transition of the Rebel Alliance into the formation of The People’s Tribunal, which, as we know, has made a truly representative form of democracy possible.
As the virus illuminated society’s inequities and fault lines, Alice imagined a new world based upon social justice for all, a vision that proved so captivating, a global organic movement formed around it including Alice’s own Disabled Oracles Society. While she sounded the alarm of what was at stake in the developing frontier of genetic engineering, humanity awoke to the shocking realisation that we risked having our very humanity stripped away.
In the midst of the upheaval of the pandemic, economists baying for the sacrifice of human lives in the name of this intangible entity, the economy, gradually awoke the populace to the rigged system they’d been victims of. One mid-pandemic newspaper headline laid bare this illusionary dissonance. “Economy to bounce back, jobs and wages won’t.” What was this cruel master that needed to be fed the bodies of the marginalised and immuno-compromised and how many of us had to realise we were being relegated to the margins to bring an end to this de-humanising system?
This process became known as “the donut effect”, first espoused by urban planners in the 20th C and popularised in the cultural sphere by Sydney Festival director Wesley Enoch, where society’s centre began to appear increasingly empty or hollow, a moral vacuum, and its real substance, its heft, its essence and tastiness dwelt in the outer circle, the margins. As various marginalised communities formed connections and shared resources, the hollowed-out centre felt its moral authority evaporate, while marginalised communities discovered their combined energies represented a formidable force for change.
A loose alliance of disability advocates, environmental and social justice activists, Indigenous leaders, refugee groups, migrant communities, artists, the under-employed and the homeless, those who have battled addiction and mental health issues, came together in the wake of the Pandemic, harnessing the momentum of community building and grass roots activism the virus inspired. This potent intersection formed the basis of the Rebel Alliance.
As we wrestled with a rolling series of crises through the 2020s, environmental, economic, social and health-related, those on the margins seemed to have the firmest grip on the solutions. Those who had suffered, endured, known deep pain, and felt society’s disdain and neglect, it was these communities who arose and were best equipped to live with the uncertainties of the age. Instead of being seen as “vulnerable,” those on the margins seemed to channel ancient traditional wisdom in converting poison into power, proving that those who had suffered most at the hands of a cruel capitalist system were best qualified to heals its wounds and guide us to a better future.
Alice Wong’s Disabled Oracle Society seized its moment in the public debate around gene editing to inspire new definitions of health, a new appreciation of difference, new concepts of time and human value and highlighting the interdependence of these marginalised communities. As the economic establishment put forward chilling assessments of who was considered dispensable to the machinations of the capitalist system and who was not, it was glaringly obvious that this system no longer served the people, in fact, we were required to serve it or be rendered obsolete. The rise of gene editing was soon seen as nothing short of cultural genocide.
What arose out of the pandemic and the societal soul-searching it inspired, was a heightened sense of community and a regard for the special skill sets acquired by and required of those formerly shunted to the margins. As entire populations were pushed into states of vulnerability and uncertainty, the resilience, patience, strength and perspective of marginalised communities were recognised as guiding principles for a new paradigm.
While capitalism and colonialism had required a speeding up of time, with their ruthless notions of productivity and growth, the post-pandemic world view re-claimed an alignment with the natural rhythms of time evident all around us in seasonal cycles, organic and circular processes of growth and decay. The enforced isolation and slowing down of pandemic lockdown allowed humanity to fall back into synchronisation with these natural rhythms, stirring deep ancestral memory when society’s cues were taken from the appearance of a particular flower, the migration of animals, the availability of seasonal foods. Once felt, this generational wisdom could not be un-known and the false gods and artifices of capitalism, perpetual growth and market forces soon fell.
The Rebel Alliance emerged as a guerrilla movement with no less an ambition than the overthrow of capitalism. But rather than fighting an entrenched economic system, it soon evolved a strategy of by-passing it altogether, of forging a society where inter-connected communities met each other’s needs in healthy symbiotic relationships rather than throwing money at having them inadequately papered over by consumerism, uncaring corporations and shiny trinkets. The result was a quantum leap in human consciousness and empathy that recognised our shared fate as single cells in the greater organism of humanity.
The shared values of the Rebel Alliance spread so widely and were embraced so universally that the hollowness at the centre of the old system’s donut became un-ignorable and un-sustainable. Like the emperor with no clothes, once it was pointed out it could not be un-seen. And so, the Rebel Alliance’s principles of collective action and community empowerment became enshrined in the formation of The People’s Tribunal, which soon became an essential layer of veto in our governance systems. Randomly selected community members convened to discuss and debate critical societal issues and make recommendations to government that truly reflected community standards freed of the corrupting influence of lobbyists and vested interests. The donut had swallowed the hole. In its place nothing less than a new definition of wealth evolved. As anthropologist Wade Davis wrote in a blistering analysis of the decline of the US at the height of the 2020 pandemic: “The measure of wealth in a civilized nation is not the currency accumulated by the lucky few, but rather the strength and resonance of social relations and the bonds of reciprocity that connect all people in common purpose.”
Today, we celebrate this evolution in our collective decision making and the empowerment of communities to truly determine their own destinies – in which every voice is heard, all lives are valued and no one is left behind. The results have been profound – a restoration of faith in our governance systems, adequate protections for the environment, the safeguarding of human rights, a heightened regard for the humanising role of the arts in society, the wisdom of formerly marginalised groups brought to the fore, the rise of a new spiritualism that relies not on the dogma of any one religion but the unifying humanitarian principles they all share. The catchcry of the Disabled Oracles Society grew into a mainstream chorus, “Nothing about us without us.”
The struggles and hardship of this inspiring movement, the ancestors and elders of marginalised communities, have brought us to a brighter future but there remains much work to be done. From each of us is required a searching self-awareness, a transcendence of self-interest, a heartfelt embrace of the common good. Today, just as we celebrate the progress made together we here, at The New Sun Times, re-commit to the arduous journey ahead to complete this societal transformation.
Future generated by Jude, Kelly, Hanna, Susan, Ellis, Kata and Tim.
UNUN Day of Celebration
October 24, 2029
Deadly Dirt Rave
To all UN communities across the world:
Register your local Altar Festivities for this important day of global celebration.
The UNUN Treaties Collection is available for all communities to access.
Please note that 2029 is the 7th anniversary of the First Nations Treaties within Continent 7, formerly known as Australia.
Citizens are encouraged to register needs yet to be captured.
We remain committed to equity at the highest level.
Please crypto-message the Dispersed Headquarters of UNUN
to upload invitations and orders of procedure.
Alert others to let them know whether your community will welcome visitors
or be a closed event
due to illness or sorry business.
The theme for this year’s celebration is
A mere 10 years ago fUNgus was starting to be generatively used to address the Climate Crisis but few could have predicted the vital role it would play.
Now the fungal kingdom is celebrated in all its eukaryotic glory.
Yeasts, moulds and microorganisms are key to our interconnected future.
As many will already know, fUNgus has been around for more than 400 million years. With strong evidence that it was the dominant life form on Earth 250 million years ago, there is increasingly detailed evidence of close human relationship to this kingdom and recognition that ancient Aboriginal fungal lore and knowledge has been passed orally from generation to generation. It was traditionally used for medicines, food and recreation.
We rely on fUNgus for lifesaving drugs, biobased fuels, fragrances, adhesives, durable lightweight packaging that can be made into shoes and a growing suite of small biological molecules. Most significantly the Aspergillus tubingensis species of fUNgus has been developed to destroy plastic and is helping to resolve the waste crisis created from the 1950s to the 2020s. Most exciting was the applied use of this fungal process in saltwater to reduce the plastic soup in our oceans. Alongside the scientific development came a popularity of liquid fungal fermentation that has rapidly spread. When psilocybin was legalised in 2024, micro-dosing became a popular pastime, opening hearts and spirits for the great UNdoing. Creative energy and purpose was UNleashed.
Transition from chemical factories to biological fermenters saw the culture embrace fUNgus ceremonies.
This year honours thriving rituals, popular in many parts of the world.
Bend your brain and UNwind!
Thanks to the local quorum of the Kulin Nation Chapter of
the UNUN Youth Peace and Environmental Protection Corps,
who determined the theme and look of this year’s Deadly Dirt Rave.
Get your shrooms on!
The Busy Workers
Participate in the comic rituals of bureaucrats
(so that we never go back to those bad old days!)
Communities of care
Former prisoners share stories of prison life,
former billionaires randomly distribute more sequestered funds.
Choir of the UNvoiced
Long table feasting
Advance Fermentation Parties
(why wait to celebrate!)
MEMORY BACKLOG Formerly ‘United Nations Day’, communities across earth have transitioned this international event through the Dispersed UNUN. This will be the 82nd day of celebration since ‘United Nations Day’ was first conceived as an international day of recognition in 1947. Since the United Nations decentralised in 2024, the UNUN has refocused locally into a myriad of mobile departments across the 7 continents, responding to local challenges and conditions while still being able to seek knowledge and advice from the whole system. This action was a cornerstone of the era of the great UNdoing of bureaucracy and authoritarian structures to reimagine the UNjust. The institutions formerly known as police, defence forces and correctional facilities were UNmade with justice redirected to care and foster programs within communities. Removing UNnecessary fences, walls and borders was an important start to the process. The Peace and Environmental Protection Corps now move between communities and countries caring for the many pop-up refugee camps that emerge as rolling disasters.
ORACLE ALERT During Altar Festivities, the fungus ceremonies will stir our Oracles, those who were once marginalised, to keep watch for signs of war. Chapters around the world will be tuning in and preparing for end-of-season announcements. We must be vigilant and listen deeply. Our Oracles keep us alert to shadow forces that threaten our new, UNreal way of life.
Dispatch prepared by Comms Team, Dispersed Headquarters of UNUN: Beverly, Bron, Deborah, Joshua, Robert, Pippa.
Written by Pippa Bailey.
Address by international jury member Eleanor Jackson
Today we recognise the Last Disabled Oracle, Alice P Wong, powerhouse, disability activist, media producer, and founder of the Disability Visibility Project.
The Right Livelihood Award, which is widely referred to as the ‘Alternative Nobel Prize’ is delighted to acknowledge Alice’s extraordinary work promoting the rights and inclusion of people with disabilities. Few other activists were as vocal or as prominent in their opposition to the strident efforts made by governments, medical scientists, corporations and other advocates to promote gene editing technology, which threatened to herald a new era of highly-troubling, corporate-led spill-over into preferential reproductive technologies for “better” humans, or – more pointedly – eugenics.
Propelled into the mainstream public awareness by the COVID 19 pandemic, with its unique stressors and risks for people with disabilities, Alice cemented her place as a champion for those subjected to the interconnected oppressions of medical racism, ageism, and ableism. So many here today can attest to her tireless work for disability rights and our panel were deeply inspired by the vitality and resilience that defines Alice’s life, work and legacy.
Alice’s advocacy offered one of the most dramatic recent opportunities presented to humanity to confront the assumptions that underpin our understandings of what “quality of life” means. For a world now grappling with our shared disability, pain and suffering, a world living with greater interconnection and greater uncertainty, Alice offered us difficult but necessary provocations and challenges as our Last Disabled Oracle.
In making this award, we want to share some of the most meaningful pillars of discomfort gifted by the work and legacy of Alice Wong acknowledging there was a time before she announced herself as the Last Disabled Oracle and there was a time after.
After, time itself was never the same. No one could presume that the timeline fit, that days, weeks, months had the same cadence and meaning for everyone, that everyone could be made to fit the timetable. Alice’s advocacy prompted a fundamental reconsideration of societal assumptions around time.
After, empathy was never the same. Who could, in the interleaving moments of evaluation, where we tried and failed to decide who mattered and who did not, that there was an easy, neat elegance to deciding who should live and who should die. Without Alice, that debate could have been dominated by corporate interests in closed conversations that specifically excluded those with the greatest expertise to sound the alarm to what was at risk.
After, care was never the same. Where was the easy line between those who gave and those who received? Where were the simple equations of power and value? The global moratorium on gene editing was driven by Alice’s recalibrations of those reductive equations. The ultimate non-zero sum game.
We stand in her debt. Please join us in recognising the Last Disabled Oracle, Alice P Wong, awardee of the 50th Right Livelihood Award.
The 50th Right Livelihood Award Presentation was an extraordinary event, marking a half century of celebration of individuals who offer exemplary answers to the most urgent challenges facing humanity. The international jury of Eleanor, Katie, Ian, Sarah and Tamara, in recognising Alice P. Wong, commended her unique, thought-provoking work promoting the rights of people with disabilities, enabling their full recognition and changing mindsets across society.
Future generated by of Katie, Ian, Sarah, Tamara and Eleanor
Artwork by Jinghua Qian
By Jinghua Qian
Remember that year we sat in the stench of death,
peering at lighted squares, searching for the numbers of fallen.
I was conscious of my breath, conscious of the too-close bodies
passing in the aisles, conscious of the skin of the oranges,
already touched, in the pile. I tried to grieve,
I tried not to cough. I couldn’t sleep or I slept too much.
I tried to believe that words were enough, but I wore
them through. There was nothing to do, or everything to do
and no one to touch. It was a communal crisis of the flesh
yet I lost mine in the wash, lost sense of the seasons
and the earth and the feeling of the turn as the world shrunk down
to different sized squares of sound and sight.We joked that none of us would age that year. A desperate lie
while op-eds sneered that it wasn’t worth a minute or a dollar
to save people from dying only a few months earlier. 1
Only. It was clear which bodies were tagged thus.
All life was cheap, but some was cheaper.
All bodies are material, only some matter.
The killings were watered down, the victims rewritten
so they were already dead or dying. 2
Suffering was naturalised, for some their only birthright.
But even back then, we knew our bodies
were sacred, our inheritance lush,
our ancestors attentive. I carried
the strength of my lineage,
I learned to shed its burden.
The gift was wheat but not bread.
Fruit but not wine. 3
In those days, the bosses and their machines
stole our time. They crept into our houses,
they owned our faces and stories
and footsteps and grammar and sold them on.
All that our ancestors gave us,
the market clambered to purchase, trade,
perfect and erase. We fought back,
marching in the streets, singing in the towers,
bleeding on film and paper. It wasn’t enough.
The water came up, the fires burned hotter, the prisons
swelled and swallowed more of our number.
The second summer of that year indoors,
the old world came knocking and flirting again.
Wheat but not bread. Fruit but not wine.
We had to take our time back, hold close
to the skin of the earth, feel the turn inside and out.
There was no script, only the noise at the door
and an ache in my neck and a dim memory
that once we were worth more and could be again.
There was no blank page. There was no empty land.
There was never a moment that felt like the stage was set
for the world to come. There was only the unmarked seed,
the garden already overgrown, and between the weeds and the flowers
there was work — there was living to be done.
- As the Covid-19 pandemic killed hundreds of people around him, Herald Sun commentator Andrew Bolt wrote, ‘Victoria’s bans are doing huge damage to — essentially — save aged-care residents from dying a few months earlier.’
- Alison Whittaker, writing about Aboriginal people dying in custody for The Guardian in 2018:
Pathology became a way to avoid blame – disguising violence as disadvantage or doom… Coroners contributed to the same blameless fatalism that has long underscored Australia’s Indigenous policy. Indigenous death and suffering was naturalised, Indigenous people lived only by the benevolence of their gaolers
In the same piece, she quotes Canadian scholar Sherene Razack who writes that ‘the Aboriginal body is considered to be one that is already dead’.
- Daniel Mallory Ortberg writes on page 59 of Something That May Shock and Discredit You, his memoir which offers a transgender Christian theology of sorts:
The answer, then, for Paul, is the body-that-is exists always in anticipation of and conversation with the body-that-will-be, that all flesh is not the same flesh but that bodies please God, that death is always followed by growth, that there are many different types of glory, that dishonor may be followed by redemption, that all things spiritual originate in the goodness of the flesh, that our bodies might come to reflect both where we have been and where we are going. As my friend Julian puts it, only half winkingly: ‘God blessed me by making me transsexual for the same reason God made wheat but not bread and fruit but not wine, so that humanity might share in the act of creation.’