Skip to content

Message from the Future: Disabled Oracle Society

 

On August 6, 2020 I gave a talk, “The Last Disabled Oracle,” as part of Assembly for the Future, a project of The Things We Did Next collaboration based in Melbourne, Australia. The Things We Did Next is co-created by Alex Kelly & David Pledger and produced by Not Yet It’s Difficult and Something Somewhere Inc. One purpose of the event is to collectively imagine multiple futures. Attendees gathered in small groups and created dispatches from 2029 in response to my talk. Below is the video and script of my talk from the year 2029. For more on disabled ancestors, check out this essay by Stacey Park Milbern.

Video: https://www.thethingswedidnext.org/assembly-for-the-future/

Video description: Alice Wong, an Asian American disabled woman speaking in front of a webcam against a dark background. She is wearing a black jacket with white stripes and a mask over her nose attached to a gray tube.

Slide showing a yellow graphic on the right with an owl that reads Disabled Oracle Society, Established 2020. On the right, North American Chapter, December 2020, San Francisco, California, USA
Slide showing a yellow graphic on the right with an owl that reads Disabled Oracle Society, Established 2020. On the right, North American Chapter, December 2020, San Francisco, California, USA

The Last Disabled Oracle (script)

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 Oracle Society, North American chapter. 

Screen share off. To describe myself, I am an Asian American woman wearing a black jacket with white stripes. I have a mask over my nose attached to a tube for my ventilator. 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. 

Slide showing a black square graphic with text in the lower half that reads: McEDIT, Custom Gene Editing. Above the text is a scissor with short lines representing stitch marks. On the upper right corner are scissors arranged diagonally
Slide showing a black square graphic with text in the lower half that reads: McEDIT, Custom Gene Editing. Above the text is a scissor with short lines representing stitch marks. On the upper right corner are scissors arranged diagonally

Share screen please. Eugenics has always been with us but in the next 10-15 years we know HGE will be widely available to the public 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.

Screen share off. 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. 

Share screen please. 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.

Next slide. 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. 

Screen share off. 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 subsequent 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. 

Share screen please. 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.”

Next slide. 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. 

Next slide. 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.” 

Screen share off. 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, or undesirable people were 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. Share screen please. 

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…”

Next slide. “…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.”

Screen share off. 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, and 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, “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: “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. 

Screen share, please. 

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.” 

Stop share screen. 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! 

 

Alice Wong (2029 bio) 

Asian American woman in a power chair sitting at a patio with a red hoodie and a floral print handkerchief around her mouth. She’s wearing a mask over her nose attached to a gray tube.
Asian American woman in a power chair sitting at a patio with a red hoodie and a floral print handkerchief around her mouth. She’s wearing a mask over her nose attached to a gray tube.

Alice Wong is the President of the North American chapter of the Disabled Oracle Society. Originally founded in 2020, there are chapters of the Disabled Oracle Society in 50 countries with over 5,000 members. She lives in San Francisco with six cats: Mittens, Patches, Blueberry, Mochi, Chester, and Oreo.

2020 bio  

 

Support Disability Media and Culture

DONATE to the Disability Visibility Project®

Leave a Reply

%d bloggers like this: