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Adapt and Resist: Spoons, Unicorns and Rainbows

Dr Jennifer A. Rode

JR6G on Bluesky and Twitter

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Talk Accessibility

Slides online:

Black text on white version (best for my visual disability)
Black text on light background (to support dyslexics)

Often include screenshots and links to newspaper articles:

Included links to allow you to read later
Included screenshots as evidence to support what I am saying
You do not need to read the on-screen text

Tried to include extensive Alt Text for all images

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The Lorax

-Dr. Suess

“UNLESS someone like you cares a whole awful lot, nothing is going to get better.

It's not.”

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It has been a long few months….

It has been a long few months. This slide shows political cartoon with a line of people in front of the US capital asking for help, as they lost their various jobs

--protecting America from terrorism

-…educating our children

-…providing aid to America’s neediest

-…protecting our national parks

-…predicting national weather

When I agreed to give the keynote a talk with a title “Adapt and resist” it was months ago, and the outlook for the disabled community was not as bleak. Even in the last few days the situation has worsened appreciably. Thus, I am left with a mammoth task. In 45 minutes, I will not be able to solve these problems, but I hope to inspire and leave you with hope.

Much of this talk is centered on the American political crisis as it relates to disability. I recognize a quarter of this audience as base doverseas assuming last years attendance numbers are approximately correct. I know from my European colleagues, how tired they are of Americans centering the dialog on their own perspective. I apologize. We really are going through a lot right now, and unfortunately, these problems are bleeding across boarders. I hope this talk helps provide you understanding as this occurs.

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What will I talk about?

How is the current political climate in the US impacting the lived experience of disabled people and disability research,
What forms of resistance are we seeing?
What can we learn from history?
What can we do to adapt and resist?

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Who am I?

Disabled person

Lupus/ Cancer/ Migraines
ADHD/Dyslexia
PTSD/ Depression

Queer/Jewish/Non-Binary
Associate Professor

Anthropologist/HCI

Researcher
Disability Activist

Who am I? Well, Hopefully my positionality will allow you to understand my perspective.

I am a Disabled person.

I have

Lupus/ long term impact from Cancer which thankfully is in remission/ Migraines that impact my vision

ADHD/ Dyslexia

PTSD/ Depression

I am an Associate Professor at UCL. I have the luxury and privilege of a job overseas that affords me intellectual freedom, but also consider myself to be in exile due to my disability.

I am an an Anthropologist studying Human-Computer Interaction. I focus on using critical theory to understand the values of sexism, ableism, racism and trans and queer phobia that get designed into technologies due to the implicit biases of their designers.

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CHI 2019 Sit-In

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Where are we?

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Disappearing DEI terms…

https://www.nytimes.com/interactive/2025/03/07/us/trump-federal-agencies-websites-words-dei.html

accessibility

disabilities

disability

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Funding Cuts

https://www.nature.com/articles/d41586-025-01099-8

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Missing Data

https://www.theguardian.com/us-news/2025/feb/04/dcd-pages-trump-public-health

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Terminating Federal Disability Support Workers

https://www.statnews.com/2025/04/01/hhs-firings-put-disabled-americans-at-risk/

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Program Cuts

https://www.independent.co.uk/news/world/americas/us-politics/students-disabilities-transition-trump-education-b2700465.html

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Presidential Commission

https://www.whitehouse.gov/presidential-actions/2025/02/establishing-the-presidents-make-america-healthy-again-commission/

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Concern over access to medication

https://www.whitehouse.gov/presidential-actions/2025/02/establishing-the-presidents-make-america-healthy-again-commission/

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Which recent policy changes regarding people with disabilities concern you most?

Go to: https://www.menti.com/
Type: 3763 6528

Or scan this QR code:

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What resistance are we seeing now?

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Protests�

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Symbolic Statements

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Archiving Data

https://nsarchive.gwu.edu/briefing-book/climate-change-transparency-project-foia/2025-02-06/disappearing-data-trump

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Reappropriation of Symbols

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Unheard Presentations

Jointly sponsored by: AccessSIGCHI, SIGACCESS, and SIGCHI
Problem: Many scholars struggle to present their research because of challenges surrounding disability, parenting, and visa
Result: hurts careers in terms of networking and visibility.
Solution: A program was launched to match Scholars with a seminar series to ensure marginalized scholars have presentation options.
Sign up to host or give a talk here: https://accesssigchi.com/seeking-volunteers-for-unheard-initiative/

Unheard presentations are an initiative sponsored by the Computer Science Groups AccessSIGCHI, SIGACCESS, and SIGCHI. It allows scholars in these areas who are struggling to present their research because of challenges surrounding disability, parenting, visa, and so forth a chance to present. It solves the problem that a lack of presentation experience hurts careers in terms of networking and visibility. We are Asking people with existing seminars series on accessibility or human computer interaction to volunteer a slot for them to speak, and we are soliciting impacted speakers in these research areas a chance to sign up. Please sign up using the link on this slide.

While this is a CS focused initiative there is lots of space to replicate for other areas. Any field from Chemistry, to disability studies, from Art history to Slavic languages could do so.

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Organized Resistance

We have arrived at the point of organized resistance. Somehow, against most odds the responsibility for leadership seems to fall not with our political leaders, but a group of rebel park rangers known as the “Alterantive National Park Service”. They have accounts on Facebook and BlueSky. Their Facebook account shown here has some 4.1million followers.

The Facebook post on this slide ominously reads “17, 2, 28, 36, 11.” This one of many posts they have made of random numbers, presumably calling members of their colalition to action for an unknown purpose. It is presumed to be good.

Later they called on their followers to “Please leave random comments on this post.” Presumably as random comments will feed the Facebook algorithm and keep this post visible. This request is justified only as “Eighty staffers have been subjected to lie detector tests. This is all we can share at this time.” 195.7k posts were made in response to this request.

Amongst them mine “tomorrow there will be more of us”

Something is growing. Resistance is happening in some incomprehensible form. There is hope.

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How to Resist? Learning from History

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Why Look At History?

We have been here before…

McCarthyism

Japanese Internment Camps

Library of Congress/Corbis/VCG via Getty Images/Foreign Policy illustration

Herbert Block, Washington Post, March 29, 1950

Immigrant Internment Camps

Associated Press

During McCarthyism, President Harry S. Truman wrote Executive Order 9835 on March 21, 1947, which required that all federal civil-service employees be screened for "loyalty".

The goal was to idenititfy membership or affiliation with any organization determined by the attorney general to be totalitarian, fascist, communist or subversive. In reality, it led to the targeting of minoritized groups such as homosexuals, as well as academics, left-wing politicians, and labor union activists.

During WWII, due to President Roosevelt's Executive Order 9066, the US forcibly relocated and incarcerated 120,000 people of Japanese descent, 2/3 of whom were US citizens.

More recently, the current President, during his last term, again created internment camps for immigrants, and he is doing it again now and threatening sending citizens overseas.

We see a historical repetition here of the US government persecuting marginalized groups. Sadly, there is no reason it could not happen again, and next time it may be disabled people.

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What has worked?

Photograph: Alex Hofford/EPA

https://www.theguardian.com/world/2024/sep/28/i-was-so-naive-10-years-after-umbrella-protests-hongkongers-remember-chinas-crackdown

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Enforce the Law

Section 504 of the Rehabilitation Act of 1973

Is still on the books.

�“No otherwise qualified individual with a disability in the United States, as defined in section 705 of this title, shall, solely by reason of his or her disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.”

�

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Sit-ins

Peacefully obstructing daily life

Anthony Tusler – 504 Sit-ins

Act Up’s Day of Desperation

Sit ins work. They allow for the peaceful obstruction of daily life.

Sit ins at lunch counters during Civil Rights movement. and the 504 protests worked, because people peacefully obstructed the majoritiy's life. In doing so they forced the majority to realize minorities were people just like them.

Jim Eigo of the AIDS movement once said “we found out, at least within those first few years, if you could identify an obvious problem, if you could get the media on board about it, if you could get 200 to 300 act up people sitting in at a very particular target and making it very very uncomfortable for the powers that were, you could affect very very quick change. ”

The STAND UP sit-in in photographed on this slide was at the height of the AIDS crisis. It filled Grand Central station with queer protestors, shutting down the station to commuters. Bunches of helium filled pink balloons came together from corners of the room, until suddenly they were used to lift a banner alight. Dramatically the message “money for AIDS not for WAR” arose from the crowd leaving onlookers spellbound.

We need to harness the power of messaging as we use our disabled bodies to make it clear, we too are part of society.

In the present day it is imperative protests remain peaceful, as there is concern the establishment is looking for opportunities to physically oppress protestors such that they become scapegoats. Yet, peaceful sitins remain powerful tools.

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Form Coalitions

American Civil Rights Movement

https://phm.org.uk/blogposts/what-was-lgsm/

AIDS Movement

https://rac.org/issues/civil-rights-voting-rights/brief-history-jews-and-civil-rights-movement-1960s

1984-5 Miners’ Strike in Wales

https://lux-magazine.com/article/the-real-story-of-act-up-sarah-schulman/

20min

We need to form coalitions. Historically these have worked.

In the US, Jewish people provided important support for the Civil Rights movement.
In the UK, what was then known as ”lesbians and gays” provided vital support for the Welsh miners strike in the 1980s under Thatcher. In doing so it exposed working class Welsh folks from small communities, to the gay culture that had been centered in London. In doing so it hastened queer acceptance in the UK.
Back in the US, with the AIDS movement, we saw the Gay rights organization Stand UP, and Women's Health Action and Mobilization (WHAM) joined together. At the time medical definitions of AIDS were defined in such a way that it did not include symptoms and associated conditions more commonly experience by women with AIDS. By not classifying their symptoms as AIDS, it meant women could not qualify for disability benefits when AIDS left them unable to join forces. The movement clarified AIDS was a woman’s disease too. The aids movement raised awareness not just of AIDS, but that there was a system of inequalities that affected women, people of color, the poor and IV drug users that was rooted in the health care system and magnified by policy.

The disabled community must too, find its allies. Seniors, many of whom become disabled, even if they don not consider themselves to be, are one natural choice. History tells us though we must find common cause to be most effective.

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Reappropriate Symbols

Source Arolsen Archives

Act Up Movement Poster

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Infiltrate

Lesbian and Gay Christian Movement

Effecting slow change

Source: unknown posted to Reddit by dimdimthelesser

Homophobia and transphobia, historically, resulted in individuals arguing that being queer was fundamentally incompatible with religious expression.

Members of organizations such as the UK-based Lesbian and Gay Christian movement and OneBodyOneFaith in the US, amongst others, challenged this perception. By continuing to engage in faith organizations, living and participating in all aspects of religious life, rather than pulling back from them slow change was affected.

OneBodyOneFaith is still pushing back on conversion therapy and recent anti-trans legislation.

While this work is not done, it does show how infiltrating the other and encouraging a meaningful dialogue slowly changes perception. This is well illustrated by water eroding rock. It starts with a single drip, but over time, a measurable impact has occurred.

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Flying Universities

Maria Salomea Skłodowska-Curie

'The Student' by Leon Kowalski, 1905,

photo: National Museum in Warsaw

If things continue as they have been with the present administration's fight against DEI, a logical progression would be push back against the teaching of disabilities studies.

In Poland at two points during occupation, the teaching of certain ideas became problematic. The education of women was prohibited. So, flying universities were formed. Scholars such as Maria Salomea Skłodowska-Curie– Madam Curie– were educated in them.

These were ad hoc universities that scheduled lectures at irregular locations at inconsistent hours to ensure they remained clandestine. They were unaccredited, because it was the knowledge and not the degree that mattered. This effort went on for decades, and many great Polish intellectuals' origins can be attributed to them.

We must continue to teach disability studies and continue research by disabled people on topics that matter to us. The internet, and encryption services like TOR, will make flying cyber universities easier.

Similarly, as academic scholars lose research funding academic conferences where ideas are exchanged are under-threat. We need online international conferences free from governmental shackles to allow for the continued free exchange of ideas especially regarding topics such as disability.

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Harness Rage and Emphasize Harm

We need to harness rage and emphasize harm

ACT UP in their Ashes Action in 1997, called on protesters to take the cremated human remains of their own loved ones who died from AIDS– or, in their words, were those that “murdered by AIDS and killed by government neglect”

And throw those ASHES onto the White House Lawn.

In preparation for this talk, I watched videos of this action. It was harrowing as dozens of largely young people sprinkled the ashes of their loved ones on the White House lawn, often tearfully, while saying a final farewell. The American capital became the graveyard of the AIDS movement.

This private moment was captured as a media spectacle and shared the rawness and youth of AIDS deaths.

It humanized them.

It reminded Americans that queers were human too and, as such, deserved health care for a treatable illness.

As we fight back against the oppressions of our day, we need to remind the establishment that disabled people are people first, and worthy of the same considerations.

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Appealing for Common Humanity

Enabling Village by WOHA in Singapore | Photo by Edward Hendricks

We can incorporate designing for people with disabilities within an appeal for common humanity. Everyone has an disabled relative or friend. We are as many as 1 in 5.

We can appropriate movements such as inclusive design. The inclusive design movement in technology and architecture advocates that instead of designing special purpose tools and spaces just for the disabled, we should be designing for all.

A typical example is pictured here in a building courtyard. The photo shows a beautiful wheelchair ramp interlaced into a seating area with staircases on either side between two buildings. The space is covered with a canopy of trees. Warm wood tones make up the benches and the ramps making the space inviting.

We can mask designing for the disabled under a rhetoric of inclusive design. Scandinavian feminists did this in computer science for decades. In their own languages they wrote of participatory design, and the need for gender diversity. Yet, when publishing in English they left mentions of gender out, as it was too controversial for English speaking computer scientists. Amongst themselves the Scandinavian Computer Scientists knew they were talking about gender equity.

When we say inclusive design, we know what we mean. Careful use of rhetoric can let us continue to seek funds for research and for social programs for all, and we can ensure people with disabilities are foregrounded in part of broader efforts.

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Ketnam

Czeslaw Miłosz

we have to be careful, however, when doing that.

Cheslaw Milosz (Chess-wav Mi-wash) writes about how intellectuals in Stalinist post-war Poland forced intellectuals to conceal their beliefs. The term Ketman is borrowed from Islamic theology, where Muslims amidst religious persecution concealed their true beliefs to preserve their faith. Ketman is living with this contradiction.

He reappropriates this in a political context. You can hide your true values from your oppressors, but in doing so you lie not only to others but to yourself. Compromising one's own integrity.

There is a cost that comes with allowing the perception of compliance, and that is a degradation of one's own soul.

Applying this to the current situation, one could comply with the US president’s executive orders. Academic institutions could swear allegiance to the administration's priorities. One could tell oneself their values will be unchanged, and perhaps quietly resist. Ketnam is a reminder that doing so will still come at a cost.

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Telushkin

Telushkin, J. “Go and Gather the Feathers” – The Book of Jewish Values: A Day-by-Day Guide to Ethical Living, New York: Bell Tower, 2000, pp. 299-300

Let’s keep looking to history for examples of successful protest strategies and reapppriate them for the digital age.

Remember

“UNLESS someone like you cares a whole awful lot, nothing is going to get better.

It's not.”

I want to close with an old Jewish story, which was more recently retold by Rabbi Telushkin in his Book of Jewish Values.

An older man had spent a lifetime speaking ill of a rabbi, and towards the twightlight of his life came to the rabbi seeking atonement for his malicious gossip.

The rabbi said he would grant it if the man were to go home and tear open a pillow. The man went home, and rend open a pillow and feathers spilled out.

He returned to the rabbi to tell him his task was complete, and receive forgiveness.

Yet, the rabbi gave him an additional task-- to collect all the feathers.

The man protested that the feathers had been caught by the wind and were impossible to collect. The rabbi explained just as the feathers were impossible to collect, so to was it impossible to undo the impact of gossip.

Traditionally, this parable is used as a caution against gossip.

Rabbi Telushkin, is of course right that much gossip is harmful, but this human desire to repeat news can be be also harnessed for good.

Let us be feathers that lilt and adapt to the wind going ever higher.

Let your messages of hope and resistance sail on the wind and spread your desires for disability justice far and wide.

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What action will you take to effect change for people with disabilities?

Go to: https://www.menti.com/
Type: 3763 6528

Or scan this QR code:

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Questions?

Ask me now
Or later

email me at jen@acm.org
Jr6g @ Bluesky and Twitter