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Men of the Mic: Legendary Hams Who Built the Community
2,179 words, 12 minutes read time.
There’s something timeless and quietly powerful about a man at a desk, microphone in hand, patiently tuning across the bands for a distant voice. It’s more than just a hobby; for many, amateur radio is a testament to curiosity, craftsmanship, and the deep desire to connect. Over the last century, countless men have sat at their radios, some unknown beyond their local nets, others rising to legendary status. Their stories still ripple through our repeaters and field days, inspiring the next wave of men who will pick up a mic and join this global fraternity.
If you’re a man eyeing your first license or dreaming of building your own shack, this journey through the lives of legendary hams will be more than history — it’s a roadmap, showing how technical skill, generosity, and camaraderie have always been the bedrock of amateur radio. And by understanding the men who built this community, you’ll find your own place among them one day.
The Founding Fathers of Ham Radio
It’s impossible to appreciate amateur radio’s rich tapestry without tipping our hats to the men who quite literally invented the medium. Their stories are the origin myths of our shared obsession.
Hiram Percy Maxim, whose call sign W1AW still echoes daily as the flagship station of the American Radio Relay League (ARRL), was far more than a hobbyist. An engineer and inventor, Maxim was the quintessential tinkerer, a man who found beauty in complex gears and wires. In 1914, he founded the ARRL to organize a chaotic landscape of independent amateurs, many of them teenagers stringing wire from their parents’ rooftops. By setting standards for relaying messages across the nation, Maxim didn’t just build an organization — he fostered the first large-scale brotherhood of radio amateurs.
His creation of the “Wouff Hong,” a whimsical yet stern device supposedly used to enforce good operating practices, underlines his belief that with the freedom of the airwaves came responsibility. When today’s operators remind each other to maintain discipline on the bands, they’re echoing Maxim’s century-old ethic.
Long before Maxim, of course, came the men whose breakthroughs made radio possible. Samuel Morse, though best known for the code that bears his name, was also a relentless promoter of long-distance communication. Guglielmo Marconi took that spark and pushed it across oceans, becoming arguably the first “amateur” by experimenting well outside established commercial infrastructure. When Marconi’s signal crossed the Atlantic in 1901, it was less an engineered certainty and more a daring gamble — the sort of risk every good ham instinctively understands.
Even Hugo Gernsback, remembered by many as the father of science fiction, played a vital role. His radio magazines educated thousands of young men who would become the first true amateurs, laying the groundwork for the clubs and societies we rely on today.
Engineers, Innovators, and Celebrity Operators
What is it about men who build things with their hands that so often draws them to amateur radio? Perhaps it’s the perfect blend of theory and practical tinkering. The hobby attracts those who yearn to know not just that something works, but precisely why and how.
Take Steve Wozniak, co-founder of Apple. Before he revolutionized personal computing, Woz was WV6VLY, fascinated by radio circuits and pushing RF signals into the ether from his California home. Even after his Apple success, he remained an advocate for ham radio’s power to teach electronics in a hands-on way that books alone never could.
Then there’s Bob Moog, whose name is synonymous with the synthesizer. Lesser known is that Moog was K2AMH, a dedicated operator who found joy in both music and radio frequency design. The careful balancing of voltages in an oscillator isn’t far removed from tuning a VFO. For men like Moog, amateur radio was as much a canvas as a utility.
Joseph Taylor, K1JT, stands at a fascinating crossroads. Already a Nobel laureate in physics for his work on pulsars, Taylor turned his brilliance to the amateur bands by developing WSJT, the software suite behind modes like FT8. These digital modes have revolutionized weak-signal work, letting hams complete contacts on bands once thought impractical. Taylor’s example shows how intellectual curiosity doesn’t stop at professional borders — sometimes, the professor wants to come home and see if he can snag a new country on 6 meters just like the rest of us.
Ray Dolby, of Dolby noise reduction fame, shared similar passions, holding an amateur license. It’s a telling pattern: men who push technical frontiers in their day jobs often retreat to the shack not just to relax, but to keep exploring. They’re proof that whether you’re designing world-changing technologies or soldering a kit on your workbench, the same thrill of discovery pulses through every good ham.
Ham Radio in Space and the Competitive Spirit
Few stories better capture the adventurous spirit of ham radio than those of operators who quite literally took it out of this world. In 1983, Owen Garriott, W5LFL, made the first amateur radio contacts from space aboard the Space Shuttle Columbia. His casual QSOs from orbit to operators below were historic, proving the technology and launching the entire concept of “space stations on the air.” Garriott was followed by countless astronauts and cosmonauts, many of whom held amateur licenses before ever donning a flight suit.
Yuri Gagarin, the first man in space, was himself a licensed operator (UA1LO), though most of his radio work was symbolic rather than operational. Still, there’s something profoundly moving in knowing that the men pushing humanity’s boundaries into orbit were often the same kids who once wound coils and trimmed antennas in their garages.
On Earth, that same pioneering spirit shows up in the fiercely contested world of radio sport. John Scott Redd, K0DQ, is a perfect example. A retired U.S. Navy vice admiral, he also happens to be a contesting legend, having won world championships in nearly every major DX contest. Men like Redd demonstrate that ham radio is as much a test of skill and endurance as any traditional sport — requiring strategy, technical acumen, and the unshakeable nerve to dig signals out of the noise when the clock is ticking.
Humanitarians, Educators, and Global Connectors
While it’s easy to be drawn to the technical marvels and competitive highs, some of amateur radio’s greatest men are remembered not for their rigs or contest scores, but for their compassion and commitment to public service.
Consider Marshall D. Moran, 9N1MM, an American Jesuit priest who became Nepal’s first ham operator. Arriving in the 1940s, Moran soon realized his modest station was the only reliable link between Kathmandu and the outside world. Countless climbers and trekkers owe their lives to the emergency traffic he relayed. In remote Himalayan villages, the reassuring crackle of 9N1MM on the air meant help was on the way.
Leslie R. Mitchell, G3BHK, similarly wove amateur radio into a global network of goodwill by founding Jamboree-On-The-Air (JOTA), the worldwide event that connects Scouts through amateur radio every October. Since its start in 1957, millions of young men have spoken to their first foreign friends over a radio Mitchell’s inspiration helped set up. In a world growing ever more polarized, these simple conversations — about hobbies, school, or what it’s like to camp under different stars — remind us that radio can be the ultimate bridge.
Early Experimenters and Broadcasting Pioneers
Long before the airwaves became crowded with thousands of daily QSOs, early experimenters were learning the hard way how to coax electrons into carrying voices.
Charles “Doc” Herrold of San Jose, California, was building primitive radio transmitters by 1909, predating even the first commercial broadcast stations. Herrold’s Sunday night shows were informal affairs, often just reading local news, but his enthusiasm laid crucial groundwork. Similarly, Charles E. Apgar, a mild-mannered insurance executive by day, used his home-built equipment to record clandestine German naval transmissions during World War I, helping break codes and ultimately saving ships.
These stories are worth retelling not only for their technical firsts but because they showcase amateur radio’s classic DNA: curious men, tinkering alone or with a handful of buddies, accidentally changing the world.
Kings, Anchormen, and Hollywood’s Quiet Operators
If amateur radio has a secret, it’s how often it lurks in the lives of men we wouldn’t expect. Walter Cronkite, whose authoritative baritone narrated America’s triumphs and tragedies, was also KB2GSD. Cronkite once narrated an ARRL film, famously concluding, “Amateur radio: what a wonderful hobby.” Coming from the most trusted man in journalism, it was an endorsement money couldn’t buy.
King Hussein of Jordan, JY1, was not content to be a figurehead. He operated regularly, chatting with common hams across the globe, reportedly insisting they drop the royal titles and just call him “Hussein.” And then there’s Marlon Brando, KE6PZH, who set up a radio on his private Tahitian island, reportedly making contacts to New Zealand just for the pleasure of breaking through the static.
Whether it’s Hollywood icons or heads of state, these men found in amateur radio the same satisfaction we all do: the joy of sending a signal into the dark and hearing a voice come back.
What These Men Teach Us
So why dwell on these stories? Because they prove again and again that amateur radio is more than a pastime. It’s a proving ground for technical skill, a sanctuary for curiosity, and, perhaps most importantly, a forge for character.
Every one of these legendary operators — whether Nobel physicist, pioneering priest, or retired sailor — shared the same humble beginnings as any newcomer. They struggled with code speed, burned fingers on soldering irons, fought RF feedback, and cursed propagation when their signals vanished into the ether. They became legends not by starting with extraordinary talent, but by pursuing their interest with steady, masculine resolve.
Their legacies tell us that the best hams aren’t defined by their equipment or QSL card collections, but by their willingness to serve, teach, and open the mic to strangers. This is the true brotherhood of amateur radio, and it’s as alive on your local repeater as in the halls of the ARRL.
A Word to the Men Still Considering Their License
If you’re reading this and still on the fence about getting your license, let these stories be your push. You don’t need a PhD, a palace, or even a fancy rig to join this fraternity. All you need is the spark that drove Maxim, the patience that guided Taylor, and the generosity that marked Moran’s every QSO.
Start by listening. Grab a cheap scanner, or tune into online SDRs. Visit a local club — you’ll find men who were once exactly where you are now, and who will be delighted to help you along. When you’re ready, pick up a study guide. Don’t worry if the material looks intimidating. Remember: every Nobel laureate and king we mentioned once puzzled over the same resistor color codes and license manuals.
Above all, understand that by stepping into this world, you’re joining a continuum stretching back more than a century — a line of men who built not just circuits and antennas, but a global brotherhood.
Wrapping Up: Join the Conversation
Amateur radio is richer for the men who made it their passion, and it waits for you to add your voice. If these stories of legendary hams have sparked something in you — if you find your mind drifting to DXpeditions, contest pileups, or late-night chats with faraway strangers — don’t let it fade. Take the first step.
Before you go, we’ve got even more stories waiting. This is the first of a special two-part series. Next week, we’ll shine the spotlight on the incredible “Women of the Mic: Legendary Hams Who Built the Community.” Don’t miss it — subscribe to our newsletter so you’ll be the first to know when it drops. Let’s keep exploring this amazing brotherhood (and sisterhood) together!
Also, I’d love to hear your thoughts. Who are the operators that inspire you? Have you had a mentor, or perhaps a memorable first contact that set your course? Drop a comment below and join our growing community of men exploring what’s possible over the air. And if you want more stories like this, sign up for our newsletter. Together, we’ll keep this brotherhood strong for the next century of men at the mic.
D. Bryan King
Sources
- ARRL – Ham Radio History (founder Hiram Percy Maxim & Wouff Hong)
- Ham Radio Prep – Famous Ham Radio Operators (Wozniak, Owen Garriott, Joseph Taylor)
- NOFARS – Famous Amateur Radio Operators (Maxim, Taylor, Moog, Cronkite, Atkins)
- NewHams.info – Famous Hams list including Vermilya, Moog, Beverage, etc.
- Red Pitaya – Famous hams like Yuri Gagarin, Les Hamilton, John Sculley
- KB6NU – Top figures: Morse, Marconi, Maxim, Gernsback, Taylor, Collins, Heathkit, Wayne Green
- EarlyRadioHistory – Pioneering amateurs 1900–1917 (Herrold, Apgar) :contentReference[oaicite:7]{index=7}
- Wikipedia – Marshall D. Moran, first ham in Nepal, humanitarian operator
- Wikipedia – John Scott Redd, contesting legend and CQ Hall of Fame
- Wikipedia – Leslie R. Mitchell, founder of Jamboree‑On‑The‑Air (JOTA)
- Wikipedia – Charles “Doc” Herrold, radio broadcaster pioneer :
- Wikipedia – Charles E. Apgar, early wireless experimenter and recorder
- HFUnderground – Famous hams including cosmonauts, royalty, dignitaries
- Oxley Region ARC – Celebrity hams (Brando, Tim Allen, Hughes, Dolby, Priscilla Presley)
- WIRED – Why ham radio endures, mentions King Hussein, Marlon Brando, Gagarin :contentReference[oaicite:15]{index=15}
Disclaimer:
The views and opinions expressed in this post are solely those of the author. The information provided is based on personal research, experience, and understanding of the subject matter at the time of writing. Readers should consult relevant experts or authorities for specific guidance related to their unique situations.
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Lax Laws in Indonesia Turn Blind Eye To Animal Trafficking
When Indonesian prosecutors went after the leader of an illegal wildlife syndicate operating near the Malacca Strait, they relied on the country’s then relatively new 2019 Quarantine Act to seek a prison sentence.
After being connected to the illegal smuggling of four lion cubs, a leopard, and 58 species of Indian Star tortoises from Malaysia to Indonesia, Irawan Shia received a four-year prison sentence and fine of IDR 1 billion (USD$65,468). If the fine is not paid, the replacement is three months imprisonment.
The sentence was the biggest ever handed out, but falls far short of what it could have been had Indonesia brought its laws in line with global conventions.
Illegal #wildlife #crime is rampant in #Indonesia, from #birds to #orangutans, to coral. #Trafficking online is worth $852.6mil USD per year. Indonesia is weak in response. #BoycottPalmOil #Boycott4Wildlife #extinction @palmoildetect https://palmoildetectives.com/2024/11/03/indonesias-lax-laws-fail-to-crack-down-on-rampant-animal-trafficking/
Share to BlueSky Share to TwitterOriginally published under Creative Commons by 360info™, written by Anugerah Rizki Akbari. Read the original article here.
Illegal trading of wildlife is rampant in Indonesia, from bird species and orangutans, to coral specimens. Wildlife traffickers using online platforms have found a new marketplace.
Environmental crime is the world’s third largest illegal trade, according to INTERPOL. It’s worth more than USD$20 billion a year but remains overlooked and under-prosecuted. In Indonesia, illegal trade of wildlife costs the economy an estimated USD$852,4 million every year, and according to INTERPOL it’s growing at between 5-7 percent per year.
Despite the numbers, Indonesia is falling short in its response to wildlife trafficking. Observers have called for better criminal investigations and more suitable punishments for the offenders as well as an upgrade to the legislative frameworks tackling these criminal activities.
Due to its lucrative nature and extensive markets, it is almost impossible for criminals to act individually when trafficking wildlife. Similar to drugs and human trafficking, illegal trade of wildlife requires a multitude of criminal networks with individuals holding various duties in committing the crime. Poachers, brokers, intermediaries, exporters-importers, wholesale traders, and retailers are all present in the chain of criminal enterprises.
The involvement of organised crime actors, other crime groups, officials, authorities, and militias in the different stages of wildlife trafficking complicates the state’s intervention to tackle an offence considered a nested complex crime. Because of this, the illegal trade of wildlife is generally considered to be transnational organised crime, requiring a matched response.
For example, the United Nations Conventions against Transnational Organized Crime (UNTOC), in tackling transnational organised crime enables governments to criminalise participation, introduce liability for legal persons, undertake special investigation techniques and cooperate internationally. There are programmes for law enforcement agencies to effectively collaborate in combating these crimes, such as collecting, exchange and analysis of information on the nature of organised crime and training and technical assistance.
But Indonesia has yet to adopt these initiatives in its own regulations. Despite ratifying UNTOC in 2009, the primary foundation of Indonesia’s response to illegal trade of wildlife lies in its Conservation of Biological Natural Resources and their Ecosystems Law. This more than 30-year old law is not suited to combating today’s rampant wildlife trafficking.
For instance, the maximum criminal sentence of five years’ imprisonment and fines of up to IDR 100 million (USD$6,548) are far too lenient compared to the harm caused by the illegal wildlife trade. Indonesian law fails to regulate the involvement of corporations in the illicit trade of protected floras and faunas as it only criminalises individual offenders. Subsequently, it does not equip law enforcement agencies with the necessary powers to investigate and prosecute if such crimes have cross-border characteristics and involve syndicates.
The possibility of using technology to stop wildlife trafficking is yet to be regulated. Even though the government’s claims that Indonesia has succeeded in replenishing and restoring endangered species, the law remains insufficient to comprehensively react to the evolving nature of wildlife trafficking.
Despite being recorded as the biggest verdict of a wildlife-smuggling case, Shia’s prison time does not even reach the maximum term under the 1990 Conservation Law, which various observers considered too lenient. The Quarantine Act is not specifically designed to combat wildlife trafficking as it demands the complete documents for fauna coming to Indonesia. If the offenders could provide such paperwork, the possibility of prosecuting traffickers using this law would be off the table.
Being unable to consider it an organised crime, law enforcement agencies rarely proceed with wildlife trafficking cases until the very top of its business chain. Even though the Financial Action Task Force (FATF) recommends a complete analysis on the potential money laundering risks relating to the illegal wildlife trade, convictions haven’t gone beyond the leaders and their couriers.
The fact that money laundering and other high-ranking corrupt officers were never present in Shia’s trial reiterates the fragmented strategy of pursuing wildlife trafficking syndicates.
Indonesia’s approach to legislating against wildlife trafficking is threatening its ambition to remain a biodiversity hotspot in Southeast Asia as more endangered species come closer to extinction.
Anugerah Rizki Akbari is a PhD Candidate at the Van Vollenhoven Institute for Law, Governance, and Society, Leiden Law School, Universiteit Leiden. He also holds a non-permanent position as lecturer at Department of Criminology, Faculty of Social and Political Science, University of Indonesia. His research interests are crime, criminal law, and criminal justice. He can be found on Twitter @anugerahrizki. A.R. Akbari declares no conflict of interest and did not receive special funding in any form.
Originally published under Creative Commons by 360info™.
Originally published under Creative Commons by 360info™, written by Anugerah Rizki Akbari. Read the original article here.
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#NewsFromTheFront
Weekly update from your anarchist comrades in #NES
20.01.25-26.01.25Also available on https://tekosinaanarsist.noblogs.org/category/war-updates/
## NES ##
# WEARETISHREEN ACTION DAYS
To support resistance in Tishreen Dam, the internationalist commune called for days of action on January 25th and 26th. 10 years ago, on these dates, the city of Kobane was liberated from the attacks of ISIS. Today, the attacks of Turkish forces are still ongoing. For more than 2 weeks civilian convoys have been arriving to maintain a vigil in Tishreen dam. The vigil is continually attacked by drones, with 18 civilians killed and over a 100 injured. Important representatives of the autonomous administration of North-East Syria who joined the vigil also got injured in those attacks, as well as some internationalists who also went there to support the resistance.
# INTERNATIONAL ORGANIZATIONS SUSPEND OPERATIONS IN NES
International organizations providing humanitarian help have suspended their programs in northeastern Syria without providing a timeline for the suspension. This follows an executive order signed by the new U.S. President Donald Trump, which temporarily halts all U.S. foreign aid programs for 90 days. Several international organizations operating in northeastern Syria have informed their staff that program implementation will be paused pending a review by the U.S. Agency for International Development (USAID). The executive order signed by Trump states that all heads of departments and agencies responsible for U.S. foreign development assistance programs must immediately suspend new commitments and the disbursement of development aid funds.
# RELEASE OF SYRIAN FAMILIES FROM AL-HOL
66 Syrian families currently in the al-Hol camp will be allowed to return to their home. Al-Hol camp hosts families of ISIS fighters, mostly women and children captured during the operations that brought the islamic caliphate to an end. This is the first time that detainees from Syria in al-Hol camp are allowed to leave the camp. Date for return of these families has not yet been disclosed. Talks about return of other Syrian and Iraqi families detained in the camp are on going. This announcement came together with a call to UNHCR and Red Cross to assist the camp administration to ensure the return of those families, as well as a call for the international community to take responsibility for foreign detainees.
## SYRIA ##
# HTS MOVES SOUTH AND EAST
The Military Operations forces, linked to the transitional government of HTS, took control of a corridor along the M5 in southern Syria until the city of Daraa and the border with Jordan. This move divided the territory under control of the southern operations room in the Daraa region and the Druze defense forces in Suweyda region. They also sent military forces east of the coast cities, taking control of the oil and gas fields in the region of southern Raqqa. Since the fall of the regime those areas were under control of SDF, that deployed there to prevent ISIS expansion. This transfer of control was coordinated between SDF, HTS and the international coalition, but some media outlets spread false information of clashes between HTS and SDF that SDF denied.
#ASAAD AL-SHIBANI IN DAVOS FORUM
The Foreign Minister of Syria's transitional government, Assad al Shibani, joined the World Economic Forum held yearly in Davos, Switzerland. He met with important political figures, including an interview with Tony Blair and a meeting with Masrour Barzani, PM of the KRG. Shibani called to lift the economical sanctions on Syria. He invited foreign investment to Syria and stated their intentions to privitise state-run companies. Those are clear indicators of their will to apply a neo-liberal economical agenda in exchange for acceptance as legitimate government of Syria. Shibani also called for the SDF to disband, claiming they have no longer justification to exist since his government is promising to protect the rights of kurds and other minorities.
#ISRAEL MILITARY BASE IN QUNEITRA
Israel army continue their operations to expand their occupation in southern Syria. Recently they started the construction of military base in Quneitra countryside, southern Syria. In some areas where recently deployed forces of the Military Operations, connected to the transitional government of HTS, videos with both military forces deploying together had been recorded. It is not clear how much this operations are coordinated.
## ANALYSIS ##
As HTS government consolidates it's position, asserting their diplomatic influence and expanding their military presence over Syria, their position on the autonomous self-administration starts to be more aggressive. Recent military deployments on the gas and oil fields south of Raqqa were used by some media to claim military advances over SDF, exploiting also ethnic tensions and resentments that may arab nationalists still hold against Kurds. It is not clear how much it was a mistake or disinformation of some media, or how much it was an intentional move to portray the transitional government as strong and decisive against separatism. Assad al-Shibani, FM of the HTS government who recently got his PhD from an Istanbul private university, is calling to disband SDF in the (in)famous World Economic Forum of Davos, while announcing a full embracement of neoliberal economical agenda for Syria.
Al-Sharaa, 'de facto' president of Syria, is also making declarations like "The Kurdish People's Protection Units alone did not respond to our call to restrict weapons to the authorities". Those statements dismiss not just the ongoing negotiations with SDF, but also how other armed groups also rejected his calls to reorganize the monopoly of violence under direct control of a centralized state. As SDF makes diplomatic moves to consolidate it's position and strength in the negotiation table, HTS seems to be more inclined to accelerate tensions towards confrontation, knowing they will have full support of Turkey for any military action against SDF. Turkish state media have a long history of fabricated news, and now already twice they spread false information of alleged car bombs going to Aleppo from SDF areas, indicating their readiness to create excuses to justify attacks on SDF.
Let's not lie, the situation in NES looks difficult. Still, the resistance in Tishreen is an example of the determination to resist against the invasion, to defend the advances of the revolution. We also remember how 10 years ago, 26th of January of 2015, YPG and YPJ announced the liberation of Kobane from the attacks of ISIS. We should not forget that, because at that time it looked much darker than today. And here we are, the revolution did not just defeat the caliphate, but have been also a key element to the collapse of the regime of Bashar al-Assad. It is also making impossible for Turkey to consolidate it's imperial aspirations in Syria and in Kurdistan. Revolutions are not the easy way, we know that, but difficulties won't deter us to pursue our dreams of freedom and liberation.
Revolutionary greetings! 🖤
#Syria #Rojava #Revolution #DefendRojava #DAANES #SDF #Anarchy #Anarchism #Comrades #Tishreen #Internationalism #InternationalistCommune #Kobane #feminism #ISIS #RedCross #HTS #Davos #Israel
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#NewsFromTheFront
Weekly update from your anarchist comrades in #NES
20.01.25-26.01.25Also available on https://tekosinaanarsist.noblogs.org/category/war-updates/
## NES ##
# WEARETISHREEN ACTION DAYS
To support resistance in Tishreen Dam, the internationalist commune called for days of action on January 25th and 26th. 10 years ago, on these dates, the city of Kobane was liberated from the attacks of ISIS. Today, the attacks of Turkish forces are still ongoing. For more than 2 weeks civilian convoys have been arriving to maintain a vigil in Tishreen dam. The vigil is continually attacked by drones, with 18 civilians killed and over a 100 injured. Important representatives of the autonomous administration of North-East Syria who joined the vigil also got injured in those attacks, as well as some internationalists who also went there to support the resistance.
# INTERNATIONAL ORGANIZATIONS SUSPEND OPERATIONS IN NES
International organizations providing humanitarian help have suspended their programs in northeastern Syria without providing a timeline for the suspension. This follows an executive order signed by the new U.S. President Donald Trump, which temporarily halts all U.S. foreign aid programs for 90 days. Several international organizations operating in northeastern Syria have informed their staff that program implementation will be paused pending a review by the U.S. Agency for International Development (USAID). The executive order signed by Trump states that all heads of departments and agencies responsible for U.S. foreign development assistance programs must immediately suspend new commitments and the disbursement of development aid funds.
# RELEASE OF SYRIAN FAMILIES FROM AL-HOL
66 Syrian families currently in the al-Hol camp will be allowed to return to their home. Al-Hol camp hosts families of ISIS fighters, mostly women and children captured during the operations that brought the islamic caliphate to an end. This is the first time that detainees from Syria in al-Hol camp are allowed to leave the camp. Date for return of these families has not yet been disclosed. Talks about return of other Syrian and Iraqi families detained in the camp are on going. This announcement came together with a call to UNHCR and Red Cross to assist the camp administration to ensure the return of those families, as well as a call for the international community to take responsibility for foreign detainees.
## SYRIA ##
# HTS MOVES SOUTH AND EAST
The Military Operations forces, linked to the transitional government of HTS, took control of a corridor along the M5 in southern Syria until the city of Daraa and the border with Jordan. This move divided the territory under control of the southern operations room in the Daraa region and the Druze defense forces in Suweyda region. They also sent military forces east of the coast cities, taking control of the oil and gas fields in the region of southern Raqqa. Since the fall of the regime those areas were under control of SDF, that deployed there to prevent ISIS expansion. This transfer of control was coordinated between SDF, HTS and the international coalition, but some media outlets spread false information of clashes between HTS and SDF that SDF denied.
#ASAAD AL-SHIBANI IN DAVOS FORUM
The Foreign Minister of Syria's transitional government, Assad al Shibani, joined the World Economic Forum held yearly in Davos, Switzerland. He met with important political figures, including an interview with Tony Blair and a meeting with Masrour Barzani, PM of the KRG. Shibani called to lift the economical sanctions on Syria. He invited foreign investment to Syria and stated their intentions to privitise state-run companies. Those are clear indicators of their will to apply a neo-liberal economical agenda in exchange for acceptance as legitimate government of Syria. Shibani also called for the SDF to disband, claiming they have no longer justification to exist since his government is promising to protect the rights of kurds and other minorities.
#ISRAEL MILITARY BASE IN QUNEITRA
Israel army continue their operations to expand their occupation in southern Syria. Recently they started the construction of military base in Quneitra countryside, southern Syria. In some areas where recently deployed forces of the Military Operations, connected to the transitional government of HTS, videos with both military forces deploying together had been recorded. It is not clear how much this operations are coordinated.
## ANALYSIS ##
As HTS government consolidates it's position, asserting their diplomatic influence and expanding their military presence over Syria, their position on the autonomous self-administration starts to be more aggressive. Recent military deployments on the gas and oil fields south of Raqqa were used by some media to claim military advances over SDF, exploiting also ethnic tensions and resentments that may arab nationalists still hold against Kurds. It is not clear how much it was a mistake or disinformation of some media, or how much it was an intentional move to portray the transitional government as strong and decisive against separatism. Assad al-Shibani, FM of the HTS government who recently got his PhD from an Istanbul private university, is calling to disband SDF in the (in)famous World Economic Forum of Davos, while announcing a full embracement of neoliberal economical agenda for Syria.
Al-Sharaa, 'de facto' president of Syria, is also making declarations like "The Kurdish People's Protection Units alone did not respond to our call to restrict weapons to the authorities". Those statements dismiss not just the ongoing negotiations with SDF, but also how other armed groups also rejected his calls to reorganize the monopoly of violence under direct control of a centralized state. As SDF makes diplomatic moves to consolidate it's position and strength in the negotiation table, HTS seems to be more inclined to accelerate tensions towards confrontation, knowing they will have full support of Turkey for any military action against SDF. Turkish state media have a long history of fabricated news, and now already twice they spread false information of alleged car bombs going to Aleppo from SDF areas, indicating their readiness to create excuses to justify attacks on SDF.
Let's not lie, the situation in NES looks difficult. Still, the resistance in Tishreen is an example of the determination to resist against the invasion, to defend the advances of the revolution. We also remember how 10 years ago, 26th of January of 2015, YPG and YPJ announced the liberation of Kobane from the attacks of ISIS. We should not forget that, because at that time it looked much darker than today. And here we are, the revolution did not just defeat the caliphate, but have been also a key element to the collapse of the regime of Bashar al-Assad. It is also making impossible for Turkey to consolidate it's imperial aspirations in Syria and in Kurdistan. Revolutions are not the easy way, we know that, but difficulties won't deter us to pursue our dreams of freedom and liberation.
Revolutionary greetings! 🖤
#Syria #Rojava #Revolution #DefendRojava #DAANES #SDF #Anarchy #Anarchism #Comrades #Tishreen #Internationalism #InternationalistCommune #Kobane #feminism #ISIS #RedCross #HTS #Davos #Israel
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#NewsFromTheFront
Weekly update from your anarchist comrades in #NES
20.01.25-26.01.25Also available on https://tekosinaanarsist.noblogs.org/category/war-updates/
## NES ##
# WEARETISHREEN ACTION DAYS
To support resistance in Tishreen Dam, the internationalist commune called for days of action on January 25th and 26th. 10 years ago, on these dates, the city of Kobane was liberated from the attacks of ISIS. Today, the attacks of Turkish forces are still ongoing. For more than 2 weeks civilian convoys have been arriving to maintain a vigil in Tishreen dam. The vigil is continually attacked by drones, with 18 civilians killed and over a 100 injured. Important representatives of the autonomous administration of North-East Syria who joined the vigil also got injured in those attacks, as well as some internationalists who also went there to support the resistance.
# INTERNATIONAL ORGANIZATIONS SUSPEND OPERATIONS IN NES
International organizations providing humanitarian help have suspended their programs in northeastern Syria without providing a timeline for the suspension. This follows an executive order signed by the new U.S. President Donald Trump, which temporarily halts all U.S. foreign aid programs for 90 days. Several international organizations operating in northeastern Syria have informed their staff that program implementation will be paused pending a review by the U.S. Agency for International Development (USAID). The executive order signed by Trump states that all heads of departments and agencies responsible for U.S. foreign development assistance programs must immediately suspend new commitments and the disbursement of development aid funds.
# RELEASE OF SYRIAN FAMILIES FROM AL-HOL
66 Syrian families currently in the al-Hol camp will be allowed to return to their home. Al-Hol camp hosts families of ISIS fighters, mostly women and children captured during the operations that brought the islamic caliphate to an end. This is the first time that detainees from Syria in al-Hol camp are allowed to leave the camp. Date for return of these families has not yet been disclosed. Talks about return of other Syrian and Iraqi families detained in the camp are on going. This announcement came together with a call to UNHCR and Red Cross to assist the camp administration to ensure the return of those families, as well as a call for the international community to take responsibility for foreign detainees.
## SYRIA ##
# HTS MOVES SOUTH AND EAST
The Military Operations forces, linked to the transitional government of HTS, took control of a corridor along the M5 in southern Syria until the city of Daraa and the border with Jordan. This move divided the territory under control of the southern operations room in the Daraa region and the Druze defense forces in Suweyda region. They also sent military forces east of the coast cities, taking control of the oil and gas fields in the region of southern Raqqa. Since the fall of the regime those areas were under control of SDF, that deployed there to prevent ISIS expansion. This transfer of control was coordinated between SDF, HTS and the international coalition, but some media outlets spread false information of clashes between HTS and SDF that SDF denied.
#ASAAD AL-SHIBANI IN DAVOS FORUM
The Foreign Minister of Syria's transitional government, Assad al Shibani, joined the World Economic Forum held yearly in Davos, Switzerland. He met with important political figures, including an interview with Tony Blair and a meeting with Masrour Barzani, PM of the KRG. Shibani called to lift the economical sanctions on Syria. He invited foreign investment to Syria and stated their intentions to privitise state-run companies. Those are clear indicators of their will to apply a neo-liberal economical agenda in exchange for acceptance as legitimate government of Syria. Shibani also called for the SDF to disband, claiming they have no longer justification to exist since his government is promising to protect the rights of kurds and other minorities.
#ISRAEL MILITARY BASE IN QUNEITRA
Israel army continue their operations to expand their occupation in southern Syria. Recently they started the construction of military base in Quneitra countryside, southern Syria. In some areas where recently deployed forces of the Military Operations, connected to the transitional government of HTS, videos with both military forces deploying together had been recorded. It is not clear how much this operations are coordinated.
## ANALYSIS ##
As HTS government consolidates it's position, asserting their diplomatic influence and expanding their military presence over Syria, their position on the autonomous self-administration starts to be more aggressive. Recent military deployments on the gas and oil fields south of Raqqa were used by some media to claim military advances over SDF, exploiting also ethnic tensions and resentments that may arab nationalists still hold against Kurds. It is not clear how much it was a mistake or disinformation of some media, or how much it was an intentional move to portray the transitional government as strong and decisive against separatism. Assad al-Shibani, FM of the HTS government who recently got his PhD from an Istanbul private university, is calling to disband SDF in the (in)famous World Economic Forum of Davos, while announcing a full embracement of neoliberal economical agenda for Syria.
Al-Sharaa, 'de facto' president of Syria, is also making declarations like "The Kurdish People's Protection Units alone did not respond to our call to restrict weapons to the authorities". Those statements dismiss not just the ongoing negotiations with SDF, but also how other armed groups also rejected his calls to reorganize the monopoly of violence under direct control of a centralized state. As SDF makes diplomatic moves to consolidate it's position and strength in the negotiation table, HTS seems to be more inclined to accelerate tensions towards confrontation, knowing they will have full support of Turkey for any military action against SDF. Turkish state media have a long history of fabricated news, and now already twice they spread false information of alleged car bombs going to Aleppo from SDF areas, indicating their readiness to create excuses to justify attacks on SDF.
Let's not lie, the situation in NES looks difficult. Still, the resistance in Tishreen is an example of the determination to resist against the invasion, to defend the advances of the revolution. We also remember how 10 years ago, 26th of January of 2015, YPG and YPJ announced the liberation of Kobane from the attacks of ISIS. We should not forget that, because at that time it looked much darker than today. And here we are, the revolution did not just defeat the caliphate, but have been also a key element to the collapse of the regime of Bashar al-Assad. It is also making impossible for Turkey to consolidate it's imperial aspirations in Syria and in Kurdistan. Revolutions are not the easy way, we know that, but difficulties won't deter us to pursue our dreams of freedom and liberation.
Revolutionary greetings! 🖤
#Syria #Rojava #Revolution #DefendRojava #DAANES #SDF #Anarchy #Anarchism #Comrades #Tishreen #Internationalism #InternationalistCommune #Kobane #feminism #ISIS #RedCross #HTS #Davos #Israel
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#NewsFromTheFront
Weekly update from your anarchist comrades in #NES
20.01.25-26.01.25Also available on https://tekosinaanarsist.noblogs.org/category/war-updates/
## NES ##
# WEARETISHREEN ACTION DAYS
To support resistance in Tishreen Dam, the internationalist commune called for days of action on January 25th and 26th. 10 years ago, on these dates, the city of Kobane was liberated from the attacks of ISIS. Today, the attacks of Turkish forces are still ongoing. For more than 2 weeks civilian convoys have been arriving to maintain a vigil in Tishreen dam. The vigil is continually attacked by drones, with 18 civilians killed and over a 100 injured. Important representatives of the autonomous administration of North-East Syria who joined the vigil also got injured in those attacks, as well as some internationalists who also went there to support the resistance.
# INTERNATIONAL ORGANIZATIONS SUSPEND OPERATIONS IN NES
International organizations providing humanitarian help have suspended their programs in northeastern Syria without providing a timeline for the suspension. This follows an executive order signed by the new U.S. President Donald Trump, which temporarily halts all U.S. foreign aid programs for 90 days. Several international organizations operating in northeastern Syria have informed their staff that program implementation will be paused pending a review by the U.S. Agency for International Development (USAID). The executive order signed by Trump states that all heads of departments and agencies responsible for U.S. foreign development assistance programs must immediately suspend new commitments and the disbursement of development aid funds.
# RELEASE OF SYRIAN FAMILIES FROM AL-HOL
66 Syrian families currently in the al-Hol camp will be allowed to return to their home. Al-Hol camp hosts families of ISIS fighters, mostly women and children captured during the operations that brought the islamic caliphate to an end. This is the first time that detainees from Syria in al-Hol camp are allowed to leave the camp. Date for return of these families has not yet been disclosed. Talks about return of other Syrian and Iraqi families detained in the camp are on going. This announcement came together with a call to UNHCR and Red Cross to assist the camp administration to ensure the return of those families, as well as a call for the international community to take responsibility for foreign detainees.
## SYRIA ##
# HTS MOVES SOUTH AND EAST
The Military Operations forces, linked to the transitional government of HTS, took control of a corridor along the M5 in southern Syria until the city of Daraa and the border with Jordan. This move divided the territory under control of the southern operations room in the Daraa region and the Druze defense forces in Suweyda region. They also sent military forces east of the coast cities, taking control of the oil and gas fields in the region of southern Raqqa. Since the fall of the regime those areas were under control of SDF, that deployed there to prevent ISIS expansion. This transfer of control was coordinated between SDF, HTS and the international coalition, but some media outlets spread false information of clashes between HTS and SDF that SDF denied.
#ASAAD AL-SHIBANI IN DAVOS FORUM
The Foreign Minister of Syria's transitional government, Assad al Shibani, joined the World Economic Forum held yearly in Davos, Switzerland. He met with important political figures, including an interview with Tony Blair and a meeting with Masrour Barzani, PM of the KRG. Shibani called to lift the economical sanctions on Syria. He invited foreign investment to Syria and stated their intentions to privitise state-run companies. Those are clear indicators of their will to apply a neo-liberal economical agenda in exchange for acceptance as legitimate government of Syria. Shibani also called for the SDF to disband, claiming they have no longer justification to exist since his government is promising to protect the rights of kurds and other minorities.
#ISRAEL MILITARY BASE IN QUNEITRA
Israel army continue their operations to expand their occupation in southern Syria. Recently they started the construction of military base in Quneitra countryside, southern Syria. In some areas where recently deployed forces of the Military Operations, connected to the transitional government of HTS, videos with both military forces deploying together had been recorded. It is not clear how much this operations are coordinated.
## ANALYSIS ##
As HTS government consolidates it's position, asserting their diplomatic influence and expanding their military presence over Syria, their position on the autonomous self-administration starts to be more aggressive. Recent military deployments on the gas and oil fields south of Raqqa were used by some media to claim military advances over SDF, exploiting also ethnic tensions and resentments that may arab nationalists still hold against Kurds. It is not clear how much it was a mistake or disinformation of some media, or how much it was an intentional move to portray the transitional government as strong and decisive against separatism. Assad al-Shibani, FM of the HTS government who recently got his PhD from an Istanbul private university, is calling to disband SDF in the (in)famous World Economic Forum of Davos, while announcing a full embracement of neoliberal economical agenda for Syria.
Al-Sharaa, 'de facto' president of Syria, is also making declarations like "The Kurdish People's Protection Units alone did not respond to our call to restrict weapons to the authorities". Those statements dismiss not just the ongoing negotiations with SDF, but also how other armed groups also rejected his calls to reorganize the monopoly of violence under direct control of a centralized state. As SDF makes diplomatic moves to consolidate it's position and strength in the negotiation table, HTS seems to be more inclined to accelerate tensions towards confrontation, knowing they will have full support of Turkey for any military action against SDF. Turkish state media have a long history of fabricated news, and now already twice they spread false information of alleged car bombs going to Aleppo from SDF areas, indicating their readiness to create excuses to justify attacks on SDF.
Let's not lie, the situation in NES looks difficult. Still, the resistance in Tishreen is an example of the determination to resist against the invasion, to defend the advances of the revolution. We also remember how 10 years ago, 26th of January of 2015, YPG and YPJ announced the liberation of Kobane from the attacks of ISIS. We should not forget that, because at that time it looked much darker than today. And here we are, the revolution did not just defeat the caliphate, but have been also a key element to the collapse of the regime of Bashar al-Assad. It is also making impossible for Turkey to consolidate it's imperial aspirations in Syria and in Kurdistan. Revolutions are not the easy way, we know that, but difficulties won't deter us to pursue our dreams of freedom and liberation.
Revolutionary greetings! 🖤
#Syria #Rojava #Revolution #DefendRojava #DAANES #SDF #Anarchy #Anarchism #Comrades #Tishreen #Internationalism #InternationalistCommune #Kobane #feminism #ISIS #RedCross #HTS #Davos #Israel
-
#NewsFromTheFront
Weekly update from your anarchist comrades in #NES
20.01.25-26.01.25Also available on https://tekosinaanarsist.noblogs.org/category/war-updates/
## NES ##
# WEARETISHREEN ACTION DAYS
To support resistance in Tishreen Dam, the internationalist commune called for days of action on January 25th and 26th. 10 years ago, on these dates, the city of Kobane was liberated from the attacks of ISIS. Today, the attacks of Turkish forces are still ongoing. For more than 2 weeks civilian convoys have been arriving to maintain a vigil in Tishreen dam. The vigil is continually attacked by drones, with 18 civilians killed and over a 100 injured. Important representatives of the autonomous administration of North-East Syria who joined the vigil also got injured in those attacks, as well as some internationalists who also went there to support the resistance.
# INTERNATIONAL ORGANIZATIONS SUSPEND OPERATIONS IN NES
International organizations providing humanitarian help have suspended their programs in northeastern Syria without providing a timeline for the suspension. This follows an executive order signed by the new U.S. President Donald Trump, which temporarily halts all U.S. foreign aid programs for 90 days. Several international organizations operating in northeastern Syria have informed their staff that program implementation will be paused pending a review by the U.S. Agency for International Development (USAID). The executive order signed by Trump states that all heads of departments and agencies responsible for U.S. foreign development assistance programs must immediately suspend new commitments and the disbursement of development aid funds.
# RELEASE OF SYRIAN FAMILIES FROM AL-HOL
66 Syrian families currently in the al-Hol camp will be allowed to return to their home. Al-Hol camp hosts families of ISIS fighters, mostly women and children captured during the operations that brought the islamic caliphate to an end. This is the first time that detainees from Syria in al-Hol camp are allowed to leave the camp. Date for return of these families has not yet been disclosed. Talks about return of other Syrian and Iraqi families detained in the camp are on going. This announcement came together with a call to UNHCR and Red Cross to assist the camp administration to ensure the return of those families, as well as a call for the international community to take responsibility for foreign detainees.
## SYRIA ##
# HTS MOVES SOUTH AND EAST
The Military Operations forces, linked to the transitional government of HTS, took control of a corridor along the M5 in southern Syria until the city of Daraa and the border with Jordan. This move divided the territory under control of the southern operations room in the Daraa region and the Druze defense forces in Suweyda region. They also sent military forces east of the coast cities, taking control of the oil and gas fields in the region of southern Raqqa. Since the fall of the regime those areas were under control of SDF, that deployed there to prevent ISIS expansion. This transfer of control was coordinated between SDF, HTS and the international coalition, but some media outlets spread false information of clashes between HTS and SDF that SDF denied.
#ASAAD AL-SHIBANI IN DAVOS FORUM
The Foreign Minister of Syria's transitional government, Assad al Shibani, joined the World Economic Forum held yearly in Davos, Switzerland. He met with important political figures, including an interview with Tony Blair and a meeting with Masrour Barzani, PM of the KRG. Shibani called to lift the economical sanctions on Syria. He invited foreign investment to Syria and stated their intentions to privitise state-run companies. Those are clear indicators of their will to apply a neo-liberal economical agenda in exchange for acceptance as legitimate government of Syria. Shibani also called for the SDF to disband, claiming they have no longer justification to exist since his government is promising to protect the rights of kurds and other minorities.
#ISRAEL MILITARY BASE IN QUNEITRA
Israel army continue their operations to expand their occupation in southern Syria. Recently they started the construction of military base in Quneitra countryside, southern Syria. In some areas where recently deployed forces of the Military Operations, connected to the transitional government of HTS, videos with both military forces deploying together had been recorded. It is not clear how much this operations are coordinated.
## ANALYSIS ##
As HTS government consolidates it's position, asserting their diplomatic influence and expanding their military presence over Syria, their position on the autonomous self-administration starts to be more aggressive. Recent military deployments on the gas and oil fields south of Raqqa were used by some media to claim military advances over SDF, exploiting also ethnic tensions and resentments that may arab nationalists still hold against Kurds. It is not clear how much it was a mistake or disinformation of some media, or how much it was an intentional move to portray the transitional government as strong and decisive against separatism. Assad al-Shibani, FM of the HTS government who recently got his PhD from an Istanbul private university, is calling to disband SDF in the (in)famous World Economic Forum of Davos, while announcing a full embracement of neoliberal economical agenda for Syria.
Al-Sharaa, 'de facto' president of Syria, is also making declarations like "The Kurdish People's Protection Units alone did not respond to our call to restrict weapons to the authorities". Those statements dismiss not just the ongoing negotiations with SDF, but also how other armed groups also rejected his calls to reorganize the monopoly of violence under direct control of a centralized state. As SDF makes diplomatic moves to consolidate it's position and strength in the negotiation table, HTS seems to be more inclined to accelerate tensions towards confrontation, knowing they will have full support of Turkey for any military action against SDF. Turkish state media have a long history of fabricated news, and now already twice they spread false information of alleged car bombs going to Aleppo from SDF areas, indicating their readiness to create excuses to justify attacks on SDF.
Let's not lie, the situation in NES looks difficult. Still, the resistance in Tishreen is an example of the determination to resist against the invasion, to defend the advances of the revolution. We also remember how 10 years ago, 26th of January of 2015, YPG and YPJ announced the liberation of Kobane from the attacks of ISIS. We should not forget that, because at that time it looked much darker than today. And here we are, the revolution did not just defeat the caliphate, but have been also a key element to the collapse of the regime of Bashar al-Assad. It is also making impossible for Turkey to consolidate it's imperial aspirations in Syria and in Kurdistan. Revolutions are not the easy way, we know that, but difficulties won't deter us to pursue our dreams of freedom and liberation.
Revolutionary greetings! 🖤
#Syria #Rojava #Revolution #DefendRojava #DAANES #SDF #Anarchy #Anarchism #Comrades #Tishreen #Internationalism #InternationalistCommune #Kobane #feminism #ISIS #RedCross #HTS #Davos #Israel
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My hard copy of #Nameless arrived yesterday, and thank you @Impossible_PhD for signing it 💜
Now to continue my search for the challenge 😁
-
😭😭😭
I just finished #Nameless - and I can't wait to be able to read it again 💜. It was such a delight to read, and had me guessing all the way to the end.
Thank you so much @Impossible_PhD 🙏
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What! Why? How? What!
Lunchtime reading #Nameless is going to have me watching the clock until I can read on the way home again 😄☺️💜
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New book: "Nameless" by Zoe Ann Wendler (@Impossible_PhD)!
Impulse-bought because queer cyberpunk in Minnesota, what's not to like?!
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Home time! Which means to continue reading #Nameless by @Impossible_PhD 📖
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Trump administration flips civil rights mission for schools – The Washington Post
Under Trump, the Education Dept. has flipped its civil rights mission
The administration is prioritizing allegations that transgender students and students of color are getting unfair advantages while a backlog of other cases grows.
Today at 6:00 a.m. EDT, 10 minWorkers leave the Department of Education building during a rain storm in Washington on May 21. (Wesley Lapointe/For The Washington Post)
By Laura MecklerThe Trump administration has upended civil rights enforcement at K-12 schools and colleges, prioritizing cases that allege transgender students and students of color are getting unfair advantages, while severe staff cuts have left thousands of other allegations unresolved.
The Education Department’s Office for Civil Rights is so short-staffed that some attorneys have as many as 300 cases, making it impossible to devote attention to most of them, current and former employees said. Fewer cases are being closed, and 90 percent of those resolved were dismissed, typically without an investigation, up from 80 percent last year, according to data obtained by The Washington Post.
The office has a backlog of about 25,000 unresolved cases, up from about 20,000 when President Donald Trump took office, department officials said.
At the same time, under Trump, the civil rights office has announced investigations of at least 99 schools, often based on news coverage or complaints from conservative groups. As of early August, the administration had launched 27 directed investigations, probes that are opened without an outside complaint, court filings show.
These changes define the new tone and mission in the civil rights office, which is aggressively pursuing Trump’s agenda. In choosing its targets, the administration is not just picking different priorities than its predecessors; it’s flipping the interpretation of civil rights law in the opposite direction.
The Post interviewed 10 current and former employees of the office about the changes and the backlogs. Several spoke on the condition of anonymity to avoid retribution.
Help us report on the Education Department
The Washington Post wants to hear from anyone with knowledge of the Department of Education and what is changing at the agency. Contact reporter Laura Meckler by email or Signal encrypted message. [email protected] or laurameckler.11 on Signal. Read more about how to use Signal and other ways to securely contact The Post.Under the Biden administration, the Office for Civil Rights focused on ensuring equal opportunity for students of color. Now, the office has opened several investigations into whether programs aimed at addressing inequities amount to illegal discrimination in favor of those students. Forty-five colleges, for instance, are being investigated for working with the PhD Project, a program that has tried to boost the number of Black, Hispanic and Native American students who earn doctorates in business.
In another example, last year the civil rights office required a New York school district to stop using its “Redskins” mascot, saying the moniker may have created a hostile environment for Native American students. This year, the same office found it is against the law to ban the mascots, calling it an attempt to erase the history of Native American tribes.
End of carouselUnder the Biden administration, the Office for Civil Rights focused on ensuring equal opportunity for students of color. Now, the office has opened several investigations into whether programs aimed at addressing inequities amount to illegal discrimination in favor of those students. Forty-five colleges, for instance, are being investigated for working with the PhD Project, a program that has tried to boost the number of Black, Hispanic and Native American students who earn doctorates in business.
Continue/Read Original Article Here: Trump administration flips civil rights mission for schools – The Washington Post
Original article: View source
#2025 #America #BidenAdministration #CivilRights #DepartmentOfEducation #DonaldTrump #Health #History #Libraries #Library #LibraryOfCongress #Politics #Resistance #Schools #Science #TheWashingtonPost #Trump #TrumpAdministration #UnitedStates
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@Impossible_PhD I was gonna say... Did they make a bio-pic about Musk already? #LOLZ
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If you hang out in gender questioning spaces for long enough, you'll see a surprising number of people pop in, wondering if they have Trans OCD. This week on #StainedGlassWoman, we dive in, to see what that is.
And, especially, what it isn't.
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Can someone with some good training in #biochemistry study the human brain without being a #neurologist or relying on a neurologist?
Yes, you can. I am taking on this impossible task of understanding a human brain without reading from any #neurology textbooks. Instead, I am using #Copilot as my personal #learning mate to understand the human senses, brain functionalities, #cognition, #perception, ...
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Trump’s Attacks on Press Freedom Are Paving the Way for #Authoritarianism
A leading global #democracy research institute says democratic “backsliding” must be turned around quickly—warning that after 10 years, recovery is “close to impossible.”
For the first time in more than 20 years, by #2025 #DemocracyReport’s estimate, the world now has more #autocracies (91) than #democracies (88), with liberal democracies (29) now least common regime type.
https://www.vanityfair.com/news/story/trump-press-freedom-authoritarianism
https://archive.ph/n35Qh -
This week on #StainedGlassWoman, we're enabling Jiggle Physics and taking a deep dive into everything you might need to know if you need breast augmentation as a transfeminine person--including what you need to know if you want boobs like mine. So, breast boobily on by, and make sure you've got your favorite bra on to join the conversation!
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Y'all, it's getting real. I'm gonna go from big boobies to *really* big boobies. 😳
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Season 4 episode 9: The Fantasies of Post-apocalyptic Dystopian Fiction, with Ariel Kroon
Classic, post-apocalyptic, dystopian fiction is a type of fantasy where we’re dreaming of starting over in an empty landscape from a societal and cultural slate wiped clean by some devastating event that we don’t have to feel guilty about having happened—at least, it is according to our very own Ariel Kroon, who does, yes, have a PhD in it.* Yet, at the same time, these fantasies generally suffer from a strange lack of imagination, wherein the characters use the “fresh new start” to recreate the same old society, albeit with themselves at the top, with the same old systemic socioeconomic, environmental, and structural problems.
It’s almost as if it is easy to dream up apocalypse but next to impossible to envision a different way of living. Although a failure of imagination would most likely look different for solarpunk, can solarpunk creators and dreamers of a positive future avoid falling into the same sort of trap?
*Post-apocalyptic Canadian science-fiction 1948-1989, she wants to clarify. She’s even got the thesis to prove it.
https://youtu.be/IdouMiiRoWc?si=fJgNd4RkpoUk_fH2
#Episode #Season4 #YouTube #solarpunk #SolarpunkPresentsPodcast #podcast #apocalypse #PostApocalypse #fantasy #DystopianFiction #Dystopia #AntiUtopia #FutureImaginary #Futuring #Scholarship #ScienceFiction #SF #SpeculativeFiction #ApocalypticFiction
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Season 4 episode 9: The Fantasies of Post-apocalyptic Dystopian Fiction, with Ariel Kroon
Classic, post-apocalyptic, dystopian fiction is a type of fantasy where we’re dreaming of starting over in an empty landscape from a societal and cultural slate wiped clean by some devastating event that we don’t have to feel guilty about having happened—at least, it is according to our very own Ariel Kroon, who does, yes, have a PhD in it.* Yet, at the same time, these fantasies generally suffer from a strange lack of imagination, wherein the characters use the “fresh new start” to recreate the same old society, albeit with themselves at the top, with the same old systemic socioeconomic, environmental, and structural problems.
It’s almost as if it is easy to dream up apocalypse but next to impossible to envision a different way of living. Although a failure of imagination would most likely look different for solarpunk, can solarpunk creators and dreamers of a positive future avoid falling into the same sort of trap?
*Post-apocalyptic Canadian science-fiction 1948-1989, she wants to clarify. She’s even got the thesis to prove it.
https://youtu.be/IdouMiiRoWc?si=fJgNd4RkpoUk_fH2
#Episode #Season4 #YouTube #solarpunk #SolarpunkPresentsPodcast #podcast #apocalypse #PostApocalypse #fantasy #DystopianFiction #Dystopia #AntiUtopia #FutureImaginary #Futuring #Scholarship #ScienceFiction #SF #SpeculativeFiction #ApocalypticFiction
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Season 4 episode 9: The Fantasies of Post-apocalyptic Dystopian Fiction, with Ariel Kroon
Classic, post-apocalyptic, dystopian fiction is a type of fantasy where we’re dreaming of starting over in an empty landscape from a societal and cultural slate wiped clean by some devastating event that we don’t have to feel guilty about having happened—at least, it is according to our very own Ariel Kroon, who does, yes, have a PhD in it.* Yet, at the same time, these fantasies generally suffer from a strange lack of imagination, wherein the characters use the “fresh new start” to recreate the same old society, albeit with themselves at the top, with the same old systemic socioeconomic, environmental, and structural problems.
It’s almost as if it is easy to dream up apocalypse but next to impossible to envision a different way of living. Although a failure of imagination would most likely look different for solarpunk, can solarpunk creators and dreamers of a positive future avoid falling into the same sort of trap?
*Post-apocalyptic Canadian science-fiction 1948-1989, she wants to clarify. She’s even got the thesis to prove it.
https://youtu.be/IdouMiiRoWc?si=fJgNd4RkpoUk_fH2
#Episode #Season4 #YouTube #solarpunk #SolarpunkPresentsPodcast #podcast #apocalypse #PostApocalypse #fantasy #DystopianFiction #Dystopia #AntiUtopia #FutureImaginary #Futuring #Scholarship #ScienceFiction #SF #SpeculativeFiction #ApocalypticFiction
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Season 4 episode 9: The Fantasies of Post-apocalyptic Dystopian Fiction, with Ariel Kroon
Classic, post-apocalyptic, dystopian fiction is a type of fantasy where we’re dreaming of starting over in an empty landscape from a societal and cultural slate wiped clean by some devastating event that we don’t have to feel guilty about having happened—at least, it is according to our very own Ariel Kroon, who does, yes, have a PhD in it.* Yet, at the same time, these fantasies generally suffer from a strange lack of imagination, wherein the characters use the “fresh new start” to recreate the same old society, albeit with themselves at the top, with the same old systemic socioeconomic, environmental, and structural problems.
It’s almost as if it is easy to dream up apocalypse but next to impossible to envision a different way of living. Although a failure of imagination would most likely look different for solarpunk, can solarpunk creators and dreamers of a positive future avoid falling into the same sort of trap?
*Post-apocalyptic Canadian science-fiction 1948-1989, she wants to clarify. She’s even got the thesis to prove it.
https://youtu.be/IdouMiiRoWc?si=fJgNd4RkpoUk_fH2
#Episode #Season4 #YouTube #solarpunk #SolarpunkPresentsPodcast #podcast #apocalypse #PostApocalypse #fantasy #DystopianFiction #Dystopia #AntiUtopia #FutureImaginary #Futuring #Scholarship #ScienceFiction #SF #SpeculativeFiction #ApocalypticFiction
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Season 4 episode 9: The Fantasies of Post-apocalyptic Dystopian Fiction, with Ariel Kroon
Classic, post-apocalyptic, dystopian fiction is a type of fantasy where we’re dreaming of starting over in an empty landscape from a societal and cultural slate wiped clean by some devastating event that we don’t have to feel guilty about having happened—at least, it is according to our very own Ariel Kroon, who does, yes, have a PhD in it.* Yet, at the same time, these fantasies generally suffer from a strange lack of imagination, wherein the characters use the “fresh new start” to recreate the same old society, albeit with themselves at the top, with the same old systemic socioeconomic, environmental, and structural problems.
It’s almost as if it is easy to dream up apocalypse but next to impossible to envision a different way of living. Although a failure of imagination would most likely look different for solarpunk, can solarpunk creators and dreamers of a positive future avoid falling into the same sort of trap?
*Post-apocalyptic Canadian science-fiction 1948-1989, she wants to clarify. She’s even got the thesis to prove it.
https://youtu.be/IdouMiiRoWc?si=fJgNd4RkpoUk_fH2
#Episode #Season4 #YouTube #solarpunk #SolarpunkPresentsPodcast #podcast #apocalypse #PostApocalypse #fantasy #DystopianFiction #Dystopia #AntiUtopia #FutureImaginary #Futuring #Scholarship #ScienceFiction #SF #SpeculativeFiction #ApocalypticFiction
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TITLE: Nearly All Hospital Websites Send Tracking Data to 3rd Parties, Endangering Pt Privacy—Common Recipients: Alphabet, Meta, Adobe, AT&T
3rd party data aggregators can follow people across multiple websites. When they track browser cookies, pixels, beacons, mobile application identifiers, and Adobe Flash technology it is very possible for them to figure out specific people.
This sort of computing device data often qualifies as PHI according to HHS:
Use of Online Tracking Technologies by HIPAA Covered Entities and Business Associates
https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/hipaa-online-tracking/index.htmlThank you Dr. Pope for summary below.
Michael Reeder, LCPC
-------- Forwarded Message --------
Medpage includes an article: “Nearly All Hospital Websites Send Tracking Data to Third Parties — Most common recipients of data were Alphabet, Meta, Adobe, and AT&T.”
Here are some excerpts:
Third-party tracking is used on almost all U.S. hospital websites, endangering patient privacy, a cross-sectional observational study found.
Of 3,747 hospitals included in the 2019 American Hospital Association (AHA) annual survey, 98.6% of their website home pages had at least one third-party data transfer, and 94.3% had at least one third-party cookie.
"In the U.S., third-party tracking is ubiquitous and extensive," researchers led by Ari B. Friedman, MD, PhD of the University of Pennsylvania in Philadelphia, wrote in Health Affairs.
"The high number of entities engaged in tracking on hospital websites heightens potential privacy risks to patients."
The tracking data most commonly went to Google's parent company Alphabet (98.5% of homepages), followed by Meta (formerly Facebook), which was used in 55.6% of hospital homepages. Adobe Systems and AT&T collected data from 31.4% and 24.6% of hospital pages, respectively.
"What we found is that it's virtually impossible to look at any hospital website in the country without exposing yourself to some tracking," study coauthor Matthew McCoy, PhD, of the University of Pennsylvania, told MedPage Today.
"That's really significant, because even if you were a patient with privacy concerns and you wanted to avoid this kind of thing, what that means is you really don't have an option to do that."
Hospital website home pages had a median of 16 third-party transfers, with more third-party transfers from medium-sized hospitals as opposed to small and large ones (24, 17, and 13 transfers, respectively).
Of hospital characteristic factors, membership in a health system, having a primarily urban patient population, and having a medical school affiliation were all significantly associated with a greater number of third-party transfers on hospital website home pages.
<snip>
On 100 randomly sampled hospital websites, searches for six "potentially sensitive" conditions turned up 30 patient-facing pages for those conditions -- and all had at least one third-party data transfer.
McCoy said the number of companies tracking data on any given website was alarming.
"Imagine you were browsing a hospital website for something related to your health, and you had one person looking over your shoulder and gleaning information about your health from a browsing session -- that would probably make you pretty uncomfortable," he said.
"Multiply that by 16, by 20, and you've got that many more people looking over your shoulder."
<snip>
According to the study, "Many of the third parties to which data are transferred have business models built on identifying and tracking people for the purposes of targeting online advertisements.”
Some tracking companies, like Acxiom, sell the data to other companies or allow health-related profiling, like Adobe and Oracle.
Because of this tracking, patients might see more targeted advertising for drugs, supplements, or insurance based on their personal medical conditions.
Health-related information, the authors wrote, could even be used in risk scores that affect credit or insurance eligibility.
<snip>
"Setting aside those kinds of questions about legal liability..., I think most healthcare providers would recognize themselves as having a responsibility to protect the interests of their patients, and that means also protecting their patients' interest in privacy," McCoy said.
<snip>
Researchers used a tool called webXray to record third-party tracking from hospital home pages, count the data transfers that occurred when a page loaded, and linked individual tracking domains to their parent companies.
Ken Pope
~~
Merely forwarded by:
Michael Reeder LCPC
Baltimore, MD#Ethics #EthicalAI #AI #CollaborativeHumanAISystems #HumanAwareAI #chatbotgpt #bard #security #dataanalytics #artificialintelligence #CopyAI #HIPAA #privacy #psychology #counseling #socialwork #psychotherapy #research
@psychotherapist @psychotherapists @psychology @socialpsych @socialwork @psychiatry #EHR #mentalhealth #technology #psychiatry #healthcare #medical #doctor #healthcare #hospital
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Narratives, Pacing, and Conundrum of Ableism
The day starts cold, the wind brisk, and the pain I feel simmers at the usual 5 out of 10 pain scale. It is rare for it to drop below 5, even with pain meds like Tynelol, but after awhile, the body grows accustomed to the pain, making it an annoying background noise at best. Other days it consumes my awareness like a furious tornado, and that is when I know the flare-up has started.
When it comes to being disabled, I’m hyperaware of many different factors, which I have to be to navigate a world that is often not accessible and a minefield of ableism. To avoid the minefield, I hyperanalyze the words I say, and will try different communication styles.
This can prove exhausting over time because I am a human being not a programmable robot. Thus when I am upset, I tend toward very direct language to describe why I’m upset and my exact emotions.
NARRATIVES WE TELL OURSELVES
The narrative I tell myself has its roots in how I was socialized growing up, the experiences I’ve had throughout my life, the oppression I’ve faced, the healing and good things I’ve done, and the harmful things I’ve done. No one person is ever perfect, but some may feel that drive to be perfect, to set impossible standards. I have spent many an hour examining the narratives I tell myself in order to unlearn the biased and unhealthy narratives that impede communication and empathy.
Some of the narratives we hold derive from societal narratives. For example, we live in a culture that villianizes neurodivergent communication and thinking styles, thus being direct can be viewed as ‘aggressive,’ ‘too emotional,’ and/or ‘illogical.’ Even if we provide logical and rational thoughts, because of the ‘directness’ the content of our words is ignored in favor of how the neurotypical, non-disabled person perceived our tone. A story is written in their head that superimposes over us, and thus we cease to be a person. Tone-policing is one way this retaliation to our words can manifest, through the critiques of our ‘tone’ and dismissing of the content of our words.
When we interact with one another, we build stories of ourselves and those people in our head. If we are not conscious of this act, the stories built often are riddled with stereotypes about various groups of people rather than based on who the person actually is. These stories — or narratives — are also influenced by the culture within which we live, our upbringing, societal norms, community norms, and how we’re educated and by whom and various historical events.
Humans are a story-telling species. We love to share stories with one another, and through this sharing of stories, we create community and a sense of safety. Building community can also go awry the same way our story-telling may — the biases that society socialized into us can contaminate the community-building if left unchecked. Unlearning our biases is a life-long practice and not easy to do, but if we are to build authentic, accessible, inclusive, and loving communities then the work of unlearning biases must be done.
It takes effort and practice to meditate on the stories we build of others and the places in which we exist. By meditating on the stories we craft, we can carefully edit the biases and untrue narratives and replace with more accurate evidence based on what is shared with us, what we witness, and knowledge we’ve gained. This skill must be taught and practiced, and even then, it is still possible to run awry of biases that sneak in periodically, especially if we have not yet admitted or discovered the bias within ourselves.
However, when people’s biases are confronted, regardless of how — whether directly or subtly — defensiveness may rear up to blockade communication and retaliate against whoever confronted us.
As a disabled trans queer person, I have learned that confronting people on their biases and microaggressions can cause this defensiveness, where they cease to see me as a person. Instead, a story is built up for them to defeat, which in turn dismisses my words in order to preserve their view of themself as a ‘good person.’
It is this attachment to ‘being a good person’ that can stifle our growth and ability to build community with others. Lama Rod Owens in Love and Rage: the Path of Liberation through Anger writes:
“We’ve learned how to pack everything away, because we’re really invested in being good people. You may say, “I am a good person. I am not a misogynist. I am not transphobic. I’m a good person.” Sometimes being a good person or my attachment to being a good person actually gets in the way of me looking at all the rough spots, at all the shadows that I’m working with.”
That story all of us have built of ourselves is often riddled with unconscious biases, especially if we are unwilling to acknowledge those biases exist.
For example, in a gaming community I frequented, a member would consistently ignore what I shared about obstacles I faced due to the systems within our society and within communities. In response, this person would say: “The only obstacle is yourself, and you can overcome anything!”
Except this is a denial of everything I’d shared about obstacles outside my control. When I confronted the person to attempt a dialog about how hurtful this ableist microaggression was, the person became defensive and retaliated. Other people jumped in to join sides and it transformed into a battleground instead of being a simple dialog. In the end, the harm caused by that person’s words ends up brushed aside as the dialogue becomes about their feeling uncomfortable at being held accountable.
When another person seeks to hold us accountable, they are trusting us with the knowledge of their hurt, and they are sharing hope that healing and growth can still occur. Being held accountable isn’t meant to be an attack or to label someone as ‘bad,’ but meant to build community and dialogue for healing. Conflict will happen in any community, but if the conflict is brushed aside to keep the illusion of ‘peace and harmony’ than those harmed are further wounded by this lack of empathy and care. The narratives the group has built around accountability become an impediment to their growth and empathy.
In the Beyond Survival Anthology, Kai Cheng Thom’s essay called ‘What to Do when You’ve Been Abusive,’ has a list of steps to assist people on that journey toward accountability and healing. Thom writes:
“‘The first step: Learn to Listen When Someone Says You Have Hurt Them.’ When one has been abusive, the very first — and one of the most difficult — skills of holding oneself accountable is learning to simply listen to the person or people whom one has harmed:
- Listening without becoming defensive.
- Listening without trying to equivocate or make excuses.
- Listening without minimizing or denying the extent of the harm.
- Listening without trying to make oneself the center of the story being told.
When someone, particularly a partner or loved one, tells you that you have hurt or abused them, it can be easy to understand this as an accusation or attack…”
Part of the reason one may fall into seeing it as an accusation or attack is this attachment to ‘being a good person.’ In the case of that gaming group, the person refused to accept my experience because it collided with what they thought ‘being a good person’ is. I had disrupted their story of their own self, and instead of sitting with that uncomfortable feelings and working through it, the person lashed out instead.
The attachment we have to ‘being a good person’ often is the root of our defensiveness. Other roots may be wounds a person has that they are in denial about or are in the process of healing, or roots in how they are socialized.
So when defensiveness happens, it places those harmed in an impossible position — how do we hold dialogue with the other person without placing ourselves in danger of being hurt further? If the other person will not meet us halfway by enacting Thom’s steps, then healing cannot happen. That wound between me and the other person causes a rift, that can easily become impassable.
Lama Rod Owens writes:
“Look at how the narratives keep us from actually doing the really important work of liberation within our own experience. It’s not supposed to feel good. It’s supposed to be hard. It’s supposed to be really uncomfortable. If it were easy and fun, everyone would be doing it.”
“People come to me and say, “Oh, this practice that you gave me, it hasn’t helped me feel good.” I get that, because when I started my practice, it didn’t feel good either. I felt as if I was suffering more. I wasn’t. I was finally paying attention to how I’ve always felt. It’s really not fun, but it definitely gets better. It gets better because I learned how to get really curious about my experience. I learned how to be re-embodied and to actually understand that all these really difficult experiences I was having were composite — there were all these different pieces of things smashed together.”
The socialization we received as children often wounds us by instilling biases that create narratives that stunt our growth. As Owens wrote, unlearning biases, seeking to heal the wounds within us, and letting go of our attachment to ‘being good’ is not easy to do. It will be hard, but it is the only way to truly grow as a person and build more holistic and healthier communities.
Part of understanding our own narratives requires us to understand not just our biases but also our strengths, weaknesses, triggers, and especially our limitations. For disabled people, understanding our limitations is forced on us by the nature of our disability, thus we must consider our limitations in order to navigate a day without causing painful flare-ups or other frustrating and/or painful reactions within our bodies.
When I do trainings about disability or about trans issues, I often ask participants to step into our shoes for a day. To imagine themselves living the narrative disabled and/or trans people often face. I may use myself as an example or a friend may assist me and offer up their narrative. We then walk the participants through our stories, and through that, we can build a shared empathy. That empathy becomes the foundation for further dialogue.
NAVIGATING A DAY
So how do I navigate a day as a disabled trans and queer person? The first step for me is analyzing my energy. I do this partly based on how I feel and some of my vitals, but I must also carefully analyze each step I take. I must analyze the words I say and who I share my story with — where I must assess the risk level with sharing based on where I am, who is present, and whether there is a safe way to exit if the situation turns toxic or too exhausting to continue.
Before I get ahead of myself, I’ll start with how I pace my actions to avoid painful flare-ups that can leave me bedridden. I start this practice when I am still in bed.
I open up the Visible app and log my sleep and vitals — this app was made for disabled people by disabled people and uses a mathematical formula based on research to calculate a score between 1 and 5 for my stability for the day. It does this by detecting the pulse in my finger and the minute changes in skin coloration from the blood flow in my finger. Today rates me a three and suggests I pace myself gently today. To simplify this analyzing, I use spoon theory, where each spoon represents energy required to do a task.
I slowly sit up to take my morning/day meds for the day. I keep a cup of water by my bed for this purpose. Cetaphil Face Cleanser sits by my bed, so I can do a dry bath. I rub it on my face and neck and a few other areas and wipe it away, which uses up half a spoon. I can’t do my whole body as that would be one too many spoons, so I leave it at that.
I pet my cats and slowly stand — if I stand too quickly I become lightheaded and may pass out — then I grab my mobility device (cane, arm crutches, rollator, or wheelchair) and navigate to the bathroom to use the toilet, dress for the day, and brush my teeth. This takes half a spoon. I have now used up one spoon simply waking up and washing up for the day.
After the bathroom, I prepare a cup of tea and select a morning snack. I return to my bedroom and assess my energy levels again. Preparing for the day has used two spoons, and I have only five today. On other days I might have six spoons, but I generally sleep and stay in bed all day to prepare for six spoon days.
Since I only have three spoons left, I boot up my computer to write, check email, check Discord and/or Signal chats, and listen to music. This will use up two spoons. That leaves my final spoon for my cats, where I feed them and play with them and clean their litter boxes.
When it is time for bed, I will take my night meds, wash up in bathroom, and read or play puzzles on my phone with its blue-light filter on until I fall asleep. This is half a spoon that I often forget to account for throughout my day.
If I plan to leave the house, I must rest the day before to prepare for a six spoon day, where five spoons is used to leave the house, go to my destination, do the activity or appointment at my destination, and return home to recover and care for my cats. Thus I only have one spoon for washing up, cat time, and eating.
If I take a shower, I will lose up to two spoons, which is why I schedule showers for a day where I do not need to leave the house. On days I must leave the house, I resort to a dry bath using Cetaphil cleanser and Rinse and Clear shampoo/conditioner.
Sometimes I must use up spoons I simply don’t have. When I push myself like this, those spoons come from future days, meaning I will crash. A crash describes how the body, overcome with fatigue from lack of sufficient energy or from intense pain will resort to forced rest, where one simply can’t get up do to an activity. On those days I have no choice but to rest as my body will not be responsive to much else. Crashes can last days, and for some disabled people can cause a backslides in their pacing and/or healing journeys.
By walking through what navigating my life is like and inviting others to do the same, where we endeavor to keep an open mind, to actively listen, we can lay a foundation for further dialogue and understanding. It’s part of how we rebuild our internal narratives.
SPOON THEORY
Since I have evaluated how I navigate my day using ‘spoons,’ let’s discuss what exactly spoon theory is.
It was developed by Christine Miserandino, when she spoke to a friend in early 2000s about her Lupus. She decided on spoons to illustrate to her friend the difficulties of navigating through a day. She asked her friend to describe how she walked through a day, but Christine would gently interrupt and share how each task cost either a full spoon or half a spoon — brushing her teeth, showering, leaving the bed and dressing, making breakfast or tea, eating breakfast, cleaning up after breakfast, preparing to leave, getting in the vehicle, the act of driving, leaving the vehicle, entering the destination, etc.
Since she had limited spoons it meant each time she left the house, she had to carefully evaluate whether she had energy for anything else. The friend was stunned because just describing her own day and using Christine’s limited spoons meant the friend wouldn’t make it through the day safely.
Christine shared this theory at the 2010 Lupus Conference and in various blog posts. Many disabled people caught wind of it, and soon ‘spoonies’ became a term some disabled people decided to call themselves.
Many disabilities can eat up a person’s energy, which makes navigating the tasks in a day difficult. The spoon theory has become a useful tool in discussing energy-limited diseases and how we navigate them. In a way, it offers abled-bodied people a glimpse into the lives of disabled people, and that can assist in fostering empathy.
Using spoon theory can build a narrative that describes disability in a relatable way. This can help with unlearning biases about what disabled people can or can’t do. Often, abled-bodied (nondisabled) people unconsciously react to disabled people by speaking and behaving as if they know more than disabled people about the disabled person’s own limitations and needs. Spoon theory helps break down that bias to reveal the truth of the disabled person’s experience, which can help open dialogue between us and others.
PACING AND ABLEIST NARRATIVES
When I attempt to describe the above to people, some people will ask why I just don’t push through and overcome this. Our culture teaches us from a young age that the only way to success is through pushing oneself hard, to not give up, to see the body as a tool to force into the mold one needs to succeed. Except that’s not how bodies function; the body isn’t a machine but a living organism that can easily break down due to illness, injury, insufficient nutrition or oxygen, allergies, etc.
Overcoming one’s own body pushes the consequences overextending ourselves to a future date, where our bodies will retaliate and force us to rest. Some people term this burn-out, which is a lovely term that encompasses not just a physical crash but also an emotional and/or mental crash.
That’s another phenomenon that people do not realize is possible — we can crash due to being overwhelmed from emotions or heavy mental activity. For example, many a friend, who worked on their PhD, admit to feeling burnt out by the time they finish. They often did little physical activity but intense mental activities, so they share frustration and confusion with me on why they feel burnt out. Part of that frustration stems from the narrative society and/or our parents built that dismisses the impact heavy mental activities have on a person’s wellbeing and health. We may be unaware this narrative exists within us, but recovering from burnout often can’t progress until we unlearn that biased narrative.
Our brain uses twenty percent of our body’s energy, and when we are engaged in a cognitive activity this can increase energy usage between five to seven percent depending on the task. We often forget how our brain is the most energy-taxing organ in our body. So when it is heavily used without must rest, our brains can decide enough is enough and force us into resting because not enough energy exists to execute the cognitive activity.
For abled-bodied — as in non-disabled people — many are in denial about these realities. They simply do not wish to acknowledge their bodies have limits, that they might someday end up disabled. The narrative about disability being bad stems from society’s classifying disabled people as a disposable class. Even if a person may not be taught directly this history, these narratives of disabled people as ‘less than’ can still be instilled in a person just by navigating their capitalist society’s productivity norms.
Marta Russel writes in Capitalism and Disability about the origin of disability as a disposable class:
“With the advent of capitalism, people were no longer tied to the land, but they were forced to find work that would pay a wage — or starve; and as production became industrialized people’s bodies were increasingly valued for their ability to function like machines.
Bosses could push non-disabled workers to produce at ever increasing rates of speed. Factory discipline, time-keeping and production norms broke with the slower, more self-determined and flexible work pattern into which many disabled people had been integrated.’ As work became more rationalized, requiring precise mechanical movements of the body, repeated in quicker succession, impaired persons — the deaf or blind, and those with mobility difficulties — were seen as — and, without job accommodations to meet their impairments, were — less ‘fit’ to do the tasks required of factory workers, and were increasingly excluded from paid employment…”
This focus on production shifted the values of society more toward who is productive versus who is not productive. It built a narrative around this ideology and socialized it into the workforce through job trainings, various educational experiences, and how we are taught about the world in childhood by parental figures and educators.
In turn, these narratives built a negative connotation around disability. Russell continues:
… as a result, disabled persons came to be regarded as a social problem and a justification emerged for segregating them out of mainstream life and into a variety of institutions, including workhouses, asylums, prisons, colonies and special schools…
.. being categorized as ‘disabled’, however, and the subsequent impoverishment that so many face when struggling to survive on disability benefits, serves another class function: it generates a very realistic fear among workers of becoming disabled. At base, the inadequate safety net is a product of the owning class’s fear of losing full control of what they do with the means of production; the American work ethic is a mechanism of social control that ensures capitalists a reliable work force for making profits. If workers were provided with a social safety net that adequately protected them through unemployment, sickness, disability, and old age, labour would gain a stronger position from which to negotiate their conditions of employment. American business retains its power over the working-class through a fear of destitution that would be weakened if the safety net were to actually become safe.”
Within capitalist societies, this narrative of disposable classes unconsciously influences how we react to limitations, to disabled people in general, and to witnessing someone experiencing hardships.
People often may not realize how much historical views, events, and ideologies can influence our interactions and how we are socialized today. These unconscious biases and unexamined narratives influence how we react to other people, to situations, and how we navigate our days.
Disability, due to how capitalism prioritizes production, has been labeled ‘disposable,’ and capitalism often uses it as a fear tactic to control the workforce. This bias then becomes embedded within the narratives people unconsciously build about themselves and other people. in turn, those narratives can often be painted over the person we interact with, thus failing to see the person as they actually are.
In the case of that gaming group, several members, who engaged in ableist microaggressions, had failed to examine their own biases about limitations, disabled people, and narratives of productivity. So when I presented them with my marginalized experience that directly contradicted their unexamined narratives, they choose to react defensively rather than meeting me halfway to build understanding.
Understanding often fails when these biased narratives, especially denial of one’s limitations, turns a person too defensive and retaliatory. Often in these cases, the person who tried to hold them accountable is punished for speaking up. This breaks down trust within the group, impedes understanding, and seeds the group with negative narratives surrounding conflict, limitations, and accountability.
Yet, we cannot fully realize our own potentials without assessing our limitations and examining the narratives we tell ourselves. Our bodies are not limitless energy sources no matter how carefully we care for it, and anyone can become ill or injured at any time, which can limit oneself further. The idea society taught us of “overcoming our limitations” sets an impossible standard that often injuries people in attempts to reach that perfect state. It is far healthier to find ways to work around our limitations, while respecting what our bodies have to tell us.
Pacing is the term used to describe how one works within their limitations, while respecting what truths our bodies may share about such limitations. For those of us with energy-limited diseases, we must learn the art of pacing, but this concept isn’t unique to disabled people.
Everyone needs to pace themselves in order to navigate a day, but they may not realize that is what it is. When people craft schedules and determine what they will work on in a day and what they save for another day — that’s the start of pacing work. The next step is facing one’s limitations and factoring our health and wellbeing into planning.
However, if the person is in denial about their limitation, if they have attached themselves to society’s perfection ideal, they increase the risk of burnout, injury, and/or illness. It also blocks understanding of other people, thus breaking attempts at dialogue.
Part of unlearning that harmful narrative of denial about limitations involves addressing the narratives we build about ourselves and other people. We cannot build healthier communities if we are unable to address the unexamined narratives and biases that poison our waters.
The narratives we tell ourselves play a major role in all we think and do, so it is crucial to examine them if we are to build empathy and dialogue with one another. This takes effort and work to allow oneself to be held accountable for harms done, and to unlearn inaccurate and biased narratives. This journey isn’t easy to do, but then building truly loving and healthy communities is never easy.
To end on a hopeful note, Amanda Leduc, a disabled author, writes:
“If society is used to not seeing disabled people in stories, society becomes used to not seeing disabled people in real life. If society is used to not seeing disabled people in real life, society will continue to build a world that makes it exceedingly difficult for disabled people to participate in said world, thus perpetuating the problem. In this world, there is no need for a wheelchair ramp because hardly anyone who wins an award will need one to get onstage. But what if we took it for granted that anyone, regardless of ability, might be able to achieve [that award], and built our stages and our environments accordingly?
It is time for us to tell different stories.”
#accountability #biases #buildingCommunity #chronicIllness #communication #disability #disabilityJustice #disabled #empathyBuilding #health #laborHistory #mentalHealth #narratives #oppression #stereotypes
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Narratives, Pacing, and Conundrum of Ableism
The day starts cold, the wind brisk, and the pain I feel simmers at the usual 5 out of 10 pain scale. It is rare for it to drop below 5, even with pain meds like Tynelol, but after awhile, the body grows accustomed to the pain, making it an annoying background noise at best. Other days it consumes my awareness like a furious tornado, and that is when I know the flare-up has started.
When it comes to being disabled, I’m hyperaware of many different factors, which I have to be to navigate a world that is often not accessible and a minefield of ableism. To avoid the minefield, I hyperanalyze the words I say, and will try different communication styles.
This can prove exhausting over time because I am a human being not a programmable robot. Thus when I am upset, I tend toward very direct language to describe why I’m upset and my exact emotions.
NARRATIVES WE TELL OURSELVES
The narrative I tell myself has its roots in how I was socialized growing up, the experiences I’ve had throughout my life, the oppression I’ve faced, the healing and good things I’ve done, and the harmful things I’ve done. No one person is ever perfect, but some may feel that drive to be perfect, to set impossible standards. I have spent many an hour examining the narratives I tell myself in order to unlearn the biased and unhealthy narratives that impede communication and empathy.
Some of the narratives we hold derive from societal narratives. For example, we live in a culture that villianizes neurodivergent communication and thinking styles, thus being direct can be viewed as ‘aggressive,’ ‘too emotional,’ and/or ‘illogical.’ Even if we provide logical and rational thoughts, because of the ‘directness’ the content of our words is ignored in favor of how the neurotypical, non-disabled person perceived our tone. A story is written in their head that superimposes over us, and thus we cease to be a person. Tone-policing is one way this retaliation to our words can manifest, through the critiques of our ‘tone’ and dismissing of the content of our words.
When we interact with one another, we build stories of ourselves and those people in our head. If we are not conscious of this act, the stories built often are riddled with stereotypes about various groups of people rather than based on who the person actually is. These stories — or narratives — are also influenced by the culture within which we live, our upbringing, societal norms, community norms, and how we’re educated and by whom and various historical events.
Humans are a story-telling species. We love to share stories with one another, and through this sharing of stories, we create community and a sense of safety. Building community can also go awry the same way our story-telling may — the biases that society socialized into us can contaminate the community-building if left unchecked. Unlearning our biases is a life-long practice and not easy to do, but if we are to build authentic, accessible, inclusive, and loving communities then the work of unlearning biases must be done.
It takes effort and practice to meditate on the stories we build of others and the places in which we exist. By meditating on the stories we craft, we can carefully edit the biases and untrue narratives and replace with more accurate evidence based on what is shared with us, what we witness, and knowledge we’ve gained. This skill must be taught and practiced, and even then, it is still possible to run awry of biases that sneak in periodically, especially if we have not yet admitted or discovered the bias within ourselves.
However, when people’s biases are confronted, regardless of how — whether directly or subtly — defensiveness may rear up to blockade communication and retaliate against whoever confronted us.
As a disabled trans queer person, I have learned that confronting people on their biases and microaggressions can cause this defensiveness, where they cease to see me as a person. Instead, a story is built up for them to defeat, which in turn dismisses my words in order to preserve their view of themself as a ‘good person.’
It is this attachment to ‘being a good person’ that can stifle our growth and ability to build community with others. Lama Rod Owens in Love and Rage: the Path of Liberation through Anger writes:
“We’ve learned how to pack everything away, because we’re really invested in being good people. You may say, “I am a good person. I am not a misogynist. I am not transphobic. I’m a good person.” Sometimes being a good person or my attachment to being a good person actually gets in the way of me looking at all the rough spots, at all the shadows that I’m working with.”
That story all of us have built of ourselves is often riddled with unconscious biases, especially if we are unwilling to acknowledge those biases exist.
For example, in a gaming community I frequented, a member would consistently ignore what I shared about obstacles I faced due to the systems within our society and within communities. In response, this person would say: “The only obstacle is yourself, and you can overcome anything!”
Except this is a denial of everything I’d shared about obstacles outside my control. When I confronted the person to attempt a dialog about how hurtful this ableist microaggression was, the person became defensive and retaliated. Other people jumped in to join sides and it transformed into a battleground instead of being a simple dialog. In the end, the harm caused by that person’s words ends up brushed aside as the dialogue becomes about their feeling uncomfortable at being held accountable.
When another person seeks to hold us accountable, they are trusting us with the knowledge of their hurt, and they are sharing hope that healing and growth can still occur. Being held accountable isn’t meant to be an attack or to label someone as ‘bad,’ but meant to build community and dialogue for healing. Conflict will happen in any community, but if the conflict is brushed aside to keep the illusion of ‘peace and harmony’ than those harmed are further wounded by this lack of empathy and care. The narratives the group has built around accountability become an impediment to their growth and empathy.
In the Beyond Survival Anthology, Kai Cheng Thom’s essay called ‘What to Do when You’ve Been Abusive,’ has a list of steps to assist people on that journey toward accountability and healing. Thom writes:
“‘The first step: Learn to Listen When Someone Says You Have Hurt Them.’ When one has been abusive, the very first — and one of the most difficult — skills of holding oneself accountable is learning to simply listen to the person or people whom one has harmed:
- Listening without becoming defensive.
- Listening without trying to equivocate or make excuses.
- Listening without minimizing or denying the extent of the harm.
- Listening without trying to make oneself the center of the story being told.
When someone, particularly a partner or loved one, tells you that you have hurt or abused them, it can be easy to understand this as an accusation or attack…”
Part of the reason one may fall into seeing it as an accusation or attack is this attachment to ‘being a good person.’ In the case of that gaming group, the person refused to accept my experience because it collided with what they thought ‘being a good person’ is. I had disrupted their story of their own self, and instead of sitting with that uncomfortable feelings and working through it, the person lashed out instead.
The attachment we have to ‘being a good person’ often is the root of our defensiveness. Other roots may be wounds a person has that they are in denial about or are in the process of healing, or roots in how they are socialized.
So when defensiveness happens, it places those harmed in an impossible position — how do we hold dialogue with the other person without placing ourselves in danger of being hurt further? If the other person will not meet us halfway by enacting Thom’s steps, then healing cannot happen. That wound between me and the other person causes a rift, that can easily become impassable.
Lama Rod Owens writes:
“Look at how the narratives keep us from actually doing the really important work of liberation within our own experience. It’s not supposed to feel good. It’s supposed to be hard. It’s supposed to be really uncomfortable. If it were easy and fun, everyone would be doing it.”
“People come to me and say, “Oh, this practice that you gave me, it hasn’t helped me feel good.” I get that, because when I started my practice, it didn’t feel good either. I felt as if I was suffering more. I wasn’t. I was finally paying attention to how I’ve always felt. It’s really not fun, but it definitely gets better. It gets better because I learned how to get really curious about my experience. I learned how to be re-embodied and to actually understand that all these really difficult experiences I was having were composite — there were all these different pieces of things smashed together.”
The socialization we received as children often wounds us by instilling biases that create narratives that stunt our growth. As Owens wrote, unlearning biases, seeking to heal the wounds within us, and letting go of our attachment to ‘being good’ is not easy to do. It will be hard, but it is the only way to truly grow as a person and build more holistic and healthier communities.
Part of understanding our own narratives requires us to understand not just our biases but also our strengths, weaknesses, triggers, and especially our limitations. For disabled people, understanding our limitations is forced on us by the nature of our disability, thus we must consider our limitations in order to navigate a day without causing painful flare-ups or other frustrating and/or painful reactions within our bodies.
When I do trainings about disability or about trans issues, I often ask participants to step into our shoes for a day. To imagine themselves living the narrative disabled and/or trans people often face. I may use myself as an example or a friend may assist me and offer up their narrative. We then walk the participants through our stories, and through that, we can build a shared empathy. That empathy becomes the foundation for further dialogue.
NAVIGATING A DAY
So how do I navigate a day as a disabled trans and queer person? The first step for me is analyzing my energy. I do this partly based on how I feel and some of my vitals, but I must also carefully analyze each step I take. I must analyze the words I say and who I share my story with — where I must assess the risk level with sharing based on where I am, who is present, and whether there is a safe way to exit if the situation turns toxic or too exhausting to continue.
Before I get ahead of myself, I’ll start with how I pace my actions to avoid painful flare-ups that can leave me bedridden. I start this practice when I am still in bed.
I open up the Visible app and log my sleep and vitals — this app was made for disabled people by disabled people and uses a mathematical formula based on research to calculate a score between 1 and 5 for my stability for the day. It does this by detecting the pulse in my finger and the minute changes in skin coloration from the blood flow in my finger. Today rates me a three and suggests I pace myself gently today. To simplify this analyzing, I use spoon theory, where each spoon represents energy required to do a task.
I slowly sit up to take my morning/day meds for the day. I keep a cup of water by my bed for this purpose. Cetaphil Face Cleanser sits by my bed, so I can do a dry bath. I rub it on my face and neck and a few other areas and wipe it away, which uses up half a spoon. I can’t do my whole body as that would be one too many spoons, so I leave it at that.
I pet my cats and slowly stand — if I stand too quickly I become lightheaded and may pass out — then I grab my mobility device (cane, arm crutches, rollator, or wheelchair) and navigate to the bathroom to use the toilet, dress for the day, and brush my teeth. This takes half a spoon. I have now used up one spoon simply waking up and washing up for the day.
After the bathroom, I prepare a cup of tea and select a morning snack. I return to my bedroom and assess my energy levels again. Preparing for the day has used two spoons, and I have only five today. On other days I might have six spoons, but I generally sleep and stay in bed all day to prepare for six spoon days.
Since I only have three spoons left, I boot up my computer to write, check email, check Discord and/or Signal chats, and listen to music. This will use up two spoons. That leaves my final spoon for my cats, where I feed them and play with them and clean their litter boxes.
When it is time for bed, I will take my night meds, wash up in bathroom, and read or play puzzles on my phone with its blue-light filter on until I fall asleep. This is half a spoon that I often forget to account for throughout my day.
If I plan to leave the house, I must rest the day before to prepare for a six spoon day, where five spoons is used to leave the house, go to my destination, do the activity or appointment at my destination, and return home to recover and care for my cats. Thus I only have one spoon for washing up, cat time, and eating.
If I take a shower, I will lose up to two spoons, which is why I schedule showers for a day where I do not need to leave the house. On days I must leave the house, I resort to a dry bath using Cetaphil cleanser and Rinse and Clear shampoo/conditioner.
Sometimes I must use up spoons I simply don’t have. When I push myself like this, those spoons come from future days, meaning I will crash. A crash describes how the body, overcome with fatigue from lack of sufficient energy or from intense pain will resort to forced rest, where one simply can’t get up do to an activity. On those days I have no choice but to rest as my body will not be responsive to much else. Crashes can last days, and for some disabled people can cause a backslides in their pacing and/or healing journeys.
By walking through what navigating my life is like and inviting others to do the same, where we endeavor to keep an open mind, to actively listen, we can lay a foundation for further dialogue and understanding. It’s part of how we rebuild our internal narratives.
SPOON THEORY
Since I have evaluated how I navigate my day using ‘spoons,’ let’s discuss what exactly spoon theory is.
It was developed by Christine Miserandino, when she spoke to a friend in early 2000s about her Lupus. She decided on spoons to illustrate to her friend the difficulties of navigating through a day. She asked her friend to describe how she walked through a day, but Christine would gently interrupt and share how each task cost either a full spoon or half a spoon — brushing her teeth, showering, leaving the bed and dressing, making breakfast or tea, eating breakfast, cleaning up after breakfast, preparing to leave, getting in the vehicle, the act of driving, leaving the vehicle, entering the destination, etc.
Since she had limited spoons it meant each time she left the house, she had to carefully evaluate whether she had energy for anything else. The friend was stunned because just describing her own day and using Christine’s limited spoons meant the friend wouldn’t make it through the day safely.
Christine shared this theory at the 2010 Lupus Conference and in various blog posts. Many disabled people caught wind of it, and soon ‘spoonies’ became a term some disabled people decided to call themselves.
Many disabilities can eat up a person’s energy, which makes navigating the tasks in a day difficult. The spoon theory has become a useful tool in discussing energy-limited diseases and how we navigate them. In a way, it offers abled-bodied people a glimpse into the lives of disabled people, and that can assist in fostering empathy.
Using spoon theory can build a narrative that describes disability in a relatable way. This can help with unlearning biases about what disabled people can or can’t do. Often, abled-bodied (nondisabled) people unconsciously react to disabled people by speaking and behaving as if they know more than disabled people about the disabled person’s own limitations and needs. Spoon theory helps break down that bias to reveal the truth of the disabled person’s experience, which can help open dialogue between us and others.
PACING AND ABLEIST NARRATIVES
When I attempt to describe the above to people, some people will ask why I just don’t push through and overcome this. Our culture teaches us from a young age that the only way to success is through pushing oneself hard, to not give up, to see the body as a tool to force into the mold one needs to succeed. Except that’s not how bodies function; the body isn’t a machine but a living organism that can easily break down due to illness, injury, insufficient nutrition or oxygen, allergies, etc.
Overcoming one’s own body pushes the consequences overextending ourselves to a future date, where our bodies will retaliate and force us to rest. Some people term this burn-out, which is a lovely term that encompasses not just a physical crash but also an emotional and/or mental crash.
That’s another phenomenon that people do not realize is possible — we can crash due to being overwhelmed from emotions or heavy mental activity. For example, many a friend, who worked on their PhD, admit to feeling burnt out by the time they finish. They often did little physical activity but intense mental activities, so they share frustration and confusion with me on why they feel burnt out. Part of that frustration stems from the narrative society and/or our parents built that dismisses the impact heavy mental activities have on a person’s wellbeing and health. We may be unaware this narrative exists within us, but recovering from burnout often can’t progress until we unlearn that biased narrative.
Our brain uses twenty percent of our body’s energy, and when we are engaged in a cognitive activity this can increase energy usage between five to seven percent depending on the task. We often forget how our brain is the most energy-taxing organ in our body. So when it is heavily used without must rest, our brains can decide enough is enough and force us into resting because not enough energy exists to execute the cognitive activity.
For abled-bodied — as in non-disabled people — many are in denial about these realities. They simply do not wish to acknowledge their bodies have limits, that they might someday end up disabled. The narrative about disability being bad stems from society’s classifying disabled people as a disposable class. Even if a person may not be taught directly this history, these narratives of disabled people as ‘less than’ can still be instilled in a person just by navigating their capitalist society’s productivity norms.
Marta Russel writes in Capitalism and Disability about the origin of disability as a disposable class:
“With the advent of capitalism, people were no longer tied to the land, but they were forced to find work that would pay a wage — or starve; and as production became industrialized people’s bodies were increasingly valued for their ability to function like machines.
Bosses could push non-disabled workers to produce at ever increasing rates of speed. Factory discipline, time-keeping and production norms broke with the slower, more self-determined and flexible work pattern into which many disabled people had been integrated.’ As work became more rationalized, requiring precise mechanical movements of the body, repeated in quicker succession, impaired persons — the deaf or blind, and those with mobility difficulties — were seen as — and, without job accommodations to meet their impairments, were — less ‘fit’ to do the tasks required of factory workers, and were increasingly excluded from paid employment…”
This focus on production shifted the values of society more toward who is productive versus who is not productive. It built a narrative around this ideology and socialized it into the workforce through job trainings, various educational experiences, and how we are taught about the world in childhood by parental figures and educators.
In turn, these narratives built a negative connotation around disability. Russell continues:
… as a result, disabled persons came to be regarded as a social problem and a justification emerged for segregating them out of mainstream life and into a variety of institutions, including workhouses, asylums, prisons, colonies and special schools…
.. being categorized as ‘disabled’, however, and the subsequent impoverishment that so many face when struggling to survive on disability benefits, serves another class function: it generates a very realistic fear among workers of becoming disabled. At base, the inadequate safety net is a product of the owning class’s fear of losing full control of what they do with the means of production; the American work ethic is a mechanism of social control that ensures capitalists a reliable work force for making profits. If workers were provided with a social safety net that adequately protected them through unemployment, sickness, disability, and old age, labour would gain a stronger position from which to negotiate their conditions of employment. American business retains its power over the working-class through a fear of destitution that would be weakened if the safety net were to actually become safe.”
Within capitalist societies, this narrative of disposable classes unconsciously influences how we react to limitations, to disabled people in general, and to witnessing someone experiencing hardships.
People often may not realize how much historical views, events, and ideologies can influence our interactions and how we are socialized today. These unconscious biases and unexamined narratives influence how we react to other people, to situations, and how we navigate our days.
Disability, due to how capitalism prioritizes production, has been labeled ‘disposable,’ and capitalism often uses it as a fear tactic to control the workforce. This bias then becomes embedded within the narratives people unconsciously build about themselves and other people. in turn, those narratives can often be painted over the person we interact with, thus failing to see the person as they actually are.
In the case of that gaming group, several members, who engaged in ableist microaggressions, had failed to examine their own biases about limitations, disabled people, and narratives of productivity. So when I presented them with my marginalized experience that directly contradicted their unexamined narratives, they choose to react defensively rather than meeting me halfway to build understanding.
Understanding often fails when these biased narratives, especially denial of one’s limitations, turns a person too defensive and retaliatory. Often in these cases, the person who tried to hold them accountable is punished for speaking up. This breaks down trust within the group, impedes understanding, and seeds the group with negative narratives surrounding conflict, limitations, and accountability.
Yet, we cannot fully realize our own potentials without assessing our limitations and examining the narratives we tell ourselves. Our bodies are not limitless energy sources no matter how carefully we care for it, and anyone can become ill or injured at any time, which can limit oneself further. The idea society taught us of “overcoming our limitations” sets an impossible standard that often injuries people in attempts to reach that perfect state. It is far healthier to find ways to work around our limitations, while respecting what our bodies have to tell us.
Pacing is the term used to describe how one works within their limitations, while respecting what truths our bodies may share about such limitations. For those of us with energy-limited diseases, we must learn the art of pacing, but this concept isn’t unique to disabled people.
Everyone needs to pace themselves in order to navigate a day, but they may not realize that is what it is. When people craft schedules and determine what they will work on in a day and what they save for another day — that’s the start of pacing work. The next step is facing one’s limitations and factoring our health and wellbeing into planning.
However, if the person is in denial about their limitation, if they have attached themselves to society’s perfection ideal, they increase the risk of burnout, injury, and/or illness. It also blocks understanding of other people, thus breaking attempts at dialogue.
Part of unlearning that harmful narrative of denial about limitations involves addressing the narratives we build about ourselves and other people. We cannot build healthier communities if we are unable to address the unexamined narratives and biases that poison our waters.
The narratives we tell ourselves play a major role in all we think and do, so it is crucial to examine them if we are to build empathy and dialogue with one another. This takes effort and work to allow oneself to be held accountable for harms done, and to unlearn inaccurate and biased narratives. This journey isn’t easy to do, but then building truly loving and healthy communities is never easy.
To end on a hopeful note, Amanda Leduc, a disabled author, writes:
“If society is used to not seeing disabled people in stories, society becomes used to not seeing disabled people in real life. If society is used to not seeing disabled people in real life, society will continue to build a world that makes it exceedingly difficult for disabled people to participate in said world, thus perpetuating the problem. In this world, there is no need for a wheelchair ramp because hardly anyone who wins an award will need one to get onstage. But what if we took it for granted that anyone, regardless of ability, might be able to achieve [that award], and built our stages and our environments accordingly?
It is time for us to tell different stories.”
#accountability #biases #buildingCommunity #chronicIllness #communication #disability #disabilityJustice #disabled #empathyBuilding #health #laborHistory #mentalHealth #narratives #oppression #stereotypes
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Narratives, Pacing, and Conundrum of Ableism
The day starts cold, the wind brisk, and the pain I feel simmers at the usual 5 out of 10 pain scale. It is rare for it to drop below 5, even with pain meds like Tynelol, but after awhile, the body grows accustomed to the pain, making it an annoying background noise at best. Other days it consumes my awareness like a furious tornado, and that is when I know the flare-up has started.
When it comes to being disabled, I’m hyperaware of many different factors, which I have to be to navigate a world that is often not accessible and a minefield of ableism. To avoid the minefield, I hyperanalyze the words I say, and will try different communication styles.
This can prove exhausting over time because I am a human being not a programmable robot. Thus when I am upset, I tend toward very direct language to describe why I’m upset and my exact emotions.
NARRATIVES WE TELL OURSELVES
The narrative I tell myself has its roots in how I was socialized growing up, the experiences I’ve had throughout my life, the oppression I’ve faced, the healing and good things I’ve done, and the harmful things I’ve done. No one person is ever perfect, but some may feel that drive to be perfect, to set impossible standards. I have spent many an hour examining the narratives I tell myself in order to unlearn the biased and unhealthy narratives that impede communication and empathy.
Some of the narratives we hold derive from societal narratives. For example, we live in a culture that villianizes neurodivergent communication and thinking styles, thus being direct can be viewed as ‘aggressive,’ ‘too emotional,’ and/or ‘illogical.’ Even if we provide logical and rational thoughts, because of the ‘directness’ the content of our words is ignored in favor of how the neurotypical, non-disabled person perceived our tone. A story is written in their head that superimposes over us, and thus we cease to be a person. Tone-policing is one way this retaliation to our words can manifest, through the critiques of our ‘tone’ and dismissing of the content of our words.
When we interact with one another, we build stories of ourselves and those people in our head. If we are not conscious of this act, the stories built often are riddled with stereotypes about various groups of people rather than based on who the person actually is. These stories — or narratives — are also influenced by the culture within which we live, our upbringing, societal norms, community norms, and how we’re educated and by whom and various historical events.
Humans are a story-telling species. We love to share stories with one another, and through this sharing of stories, we create community and a sense of safety. Building community can also go awry the same way our story-telling may — the biases that society socialized into us can contaminate the community-building if left unchecked. Unlearning our biases is a life-long practice and not easy to do, but if we are to build authentic, accessible, inclusive, and loving communities then the work of unlearning biases must be done.
It takes effort and practice to meditate on the stories we build of others and the places in which we exist. By meditating on the stories we craft, we can carefully edit the biases and untrue narratives and replace with more accurate evidence based on what is shared with us, what we witness, and knowledge we’ve gained. This skill must be taught and practiced, and even then, it is still possible to run awry of biases that sneak in periodically, especially if we have not yet admitted or discovered the bias within ourselves.
However, when people’s biases are confronted, regardless of how — whether directly or subtly — defensiveness may rear up to blockade communication and retaliate against whoever confronted us.
As a disabled trans queer person, I have learned that confronting people on their biases and microaggressions can cause this defensiveness, where they cease to see me as a person. Instead, a story is built up for them to defeat, which in turn dismisses my words in order to preserve their view of themself as a ‘good person.’
It is this attachment to ‘being a good person’ that can stifle our growth and ability to build community with others. Lama Rod Owens in Love and Rage: the Path of Liberation through Anger writes:
“We’ve learned how to pack everything away, because we’re really invested in being good people. You may say, “I am a good person. I am not a misogynist. I am not transphobic. I’m a good person.” Sometimes being a good person or my attachment to being a good person actually gets in the way of me looking at all the rough spots, at all the shadows that I’m working with.”
That story all of us have built of ourselves is often riddled with unconscious biases, especially if we are unwilling to acknowledge those biases exist.
For example, in a gaming community I frequented, a member would consistently ignore what I shared about obstacles I faced due to the systems within our society and within communities. In response, this person would say: “The only obstacle is yourself, and you can overcome anything!”
Except this is a denial of everything I’d shared about obstacles outside my control. When I confronted the person to attempt a dialog about how hurtful this ableist microaggression was, the person became defensive and retaliated. Other people jumped in to join sides and it transformed into a battleground instead of being a simple dialog. In the end, the harm caused by that person’s words ends up brushed aside as the dialogue becomes about their feeling uncomfortable at being held accountable.
When another person seeks to hold us accountable, they are trusting us with the knowledge of their hurt, and they are sharing hope that healing and growth can still occur. Being held accountable isn’t meant to be an attack or to label someone as ‘bad,’ but meant to build community and dialogue for healing. Conflict will happen in any community, but if the conflict is brushed aside to keep the illusion of ‘peace and harmony’ than those harmed are further wounded by this lack of empathy and care. The narratives the group has built around accountability become an impediment to their growth and empathy.
In the Beyond Survival Anthology, Kai Cheng Thom’s essay called ‘What to Do when You’ve Been Abusive,’ has a list of steps to assist people on that journey toward accountability and healing. Thom writes:
“‘The first step: Learn to Listen When Someone Says You Have Hurt Them.’ When one has been abusive, the very first — and one of the most difficult — skills of holding oneself accountable is learning to simply listen to the person or people whom one has harmed:
- Listening without becoming defensive.
- Listening without trying to equivocate or make excuses.
- Listening without minimizing or denying the extent of the harm.
- Listening without trying to make oneself the center of the story being told.
When someone, particularly a partner or loved one, tells you that you have hurt or abused them, it can be easy to understand this as an accusation or attack…”
Part of the reason one may fall into seeing it as an accusation or attack is this attachment to ‘being a good person.’ In the case of that gaming group, the person refused to accept my experience because it collided with what they thought ‘being a good person’ is. I had disrupted their story of their own self, and instead of sitting with that uncomfortable feelings and working through it, the person lashed out instead.
The attachment we have to ‘being a good person’ often is the root of our defensiveness. Other roots may be wounds a person has that they are in denial about or are in the process of healing, or roots in how they are socialized.
So when defensiveness happens, it places those harmed in an impossible position — how do we hold dialogue with the other person without placing ourselves in danger of being hurt further? If the other person will not meet us halfway by enacting Thom’s steps, then healing cannot happen. That wound between me and the other person causes a rift, that can easily become impassable.
Lama Rod Owens writes:
“Look at how the narratives keep us from actually doing the really important work of liberation within our own experience. It’s not supposed to feel good. It’s supposed to be hard. It’s supposed to be really uncomfortable. If it were easy and fun, everyone would be doing it.”
“People come to me and say, “Oh, this practice that you gave me, it hasn’t helped me feel good.” I get that, because when I started my practice, it didn’t feel good either. I felt as if I was suffering more. I wasn’t. I was finally paying attention to how I’ve always felt. It’s really not fun, but it definitely gets better. It gets better because I learned how to get really curious about my experience. I learned how to be re-embodied and to actually understand that all these really difficult experiences I was having were composite — there were all these different pieces of things smashed together.”
The socialization we received as children often wounds us by instilling biases that create narratives that stunt our growth. As Owens wrote, unlearning biases, seeking to heal the wounds within us, and letting go of our attachment to ‘being good’ is not easy to do. It will be hard, but it is the only way to truly grow as a person and build more holistic and healthier communities.
Part of understanding our own narratives requires us to understand not just our biases but also our strengths, weaknesses, triggers, and especially our limitations. For disabled people, understanding our limitations is forced on us by the nature of our disability, thus we must consider our limitations in order to navigate a day without causing painful flare-ups or other frustrating and/or painful reactions within our bodies.
When I do trainings about disability or about trans issues, I often ask participants to step into our shoes for a day. To imagine themselves living the narrative disabled and/or trans people often face. I may use myself as an example or a friend may assist me and offer up their narrative. We then walk the participants through our stories, and through that, we can build a shared empathy. That empathy becomes the foundation for further dialogue.
NAVIGATING A DAY
So how do I navigate a day as a disabled trans and queer person? The first step for me is analyzing my energy. I do this partly based on how I feel and some of my vitals, but I must also carefully analyze each step I take. I must analyze the words I say and who I share my story with — where I must assess the risk level with sharing based on where I am, who is present, and whether there is a safe way to exit if the situation turns toxic or too exhausting to continue.
Before I get ahead of myself, I’ll start with how I pace my actions to avoid painful flare-ups that can leave me bedridden. I start this practice when I am still in bed.
I open up the Visible app and log my sleep and vitals — this app was made for disabled people by disabled people and uses a mathematical formula based on research to calculate a score between 1 and 5 for my stability for the day. It does this by detecting the pulse in my finger and the minute changes in skin coloration from the blood flow in my finger. Today rates me a three and suggests I pace myself gently today. To simplify this analyzing, I use spoon theory, where each spoon represents energy required to do a task.
I slowly sit up to take my morning/day meds for the day. I keep a cup of water by my bed for this purpose. Cetaphil Face Cleanser sits by my bed, so I can do a dry bath. I rub it on my face and neck and a few other areas and wipe it away, which uses up half a spoon. I can’t do my whole body as that would be one too many spoons, so I leave it at that.
I pet my cats and slowly stand — if I stand too quickly I become lightheaded and may pass out — then I grab my mobility device (cane, arm crutches, rollator, or wheelchair) and navigate to the bathroom to use the toilet, dress for the day, and brush my teeth. This takes half a spoon. I have now used up one spoon simply waking up and washing up for the day.
After the bathroom, I prepare a cup of tea and select a morning snack. I return to my bedroom and assess my energy levels again. Preparing for the day has used two spoons, and I have only five today. On other days I might have six spoons, but I generally sleep and stay in bed all day to prepare for six spoon days.
Since I only have three spoons left, I boot up my computer to write, check email, check Discord and/or Signal chats, and listen to music. This will use up two spoons. That leaves my final spoon for my cats, where I feed them and play with them and clean their litter boxes.
When it is time for bed, I will take my night meds, wash up in bathroom, and read or play puzzles on my phone with its blue-light filter on until I fall asleep. This is half a spoon that I often forget to account for throughout my day.
If I plan to leave the house, I must rest the day before to prepare for a six spoon day, where five spoons is used to leave the house, go to my destination, do the activity or appointment at my destination, and return home to recover and care for my cats. Thus I only have one spoon for washing up, cat time, and eating.
If I take a shower, I will lose up to two spoons, which is why I schedule showers for a day where I do not need to leave the house. On days I must leave the house, I resort to a dry bath using Cetaphil cleanser and Rinse and Clear shampoo/conditioner.
Sometimes I must use up spoons I simply don’t have. When I push myself like this, those spoons come from future days, meaning I will crash. A crash describes how the body, overcome with fatigue from lack of sufficient energy or from intense pain will resort to forced rest, where one simply can’t get up do to an activity. On those days I have no choice but to rest as my body will not be responsive to much else. Crashes can last days, and for some disabled people can cause a backslides in their pacing and/or healing journeys.
By walking through what navigating my life is like and inviting others to do the same, where we endeavor to keep an open mind, to actively listen, we can lay a foundation for further dialogue and understanding. It’s part of how we rebuild our internal narratives.
SPOON THEORY
Since I have evaluated how I navigate my day using ‘spoons,’ let’s discuss what exactly spoon theory is.
It was developed by Christine Miserandino, when she spoke to a friend in early 2000s about her Lupus. She decided on spoons to illustrate to her friend the difficulties of navigating through a day. She asked her friend to describe how she walked through a day, but Christine would gently interrupt and share how each task cost either a full spoon or half a spoon — brushing her teeth, showering, leaving the bed and dressing, making breakfast or tea, eating breakfast, cleaning up after breakfast, preparing to leave, getting in the vehicle, the act of driving, leaving the vehicle, entering the destination, etc.
Since she had limited spoons it meant each time she left the house, she had to carefully evaluate whether she had energy for anything else. The friend was stunned because just describing her own day and using Christine’s limited spoons meant the friend wouldn’t make it through the day safely.
Christine shared this theory at the 2010 Lupus Conference and in various blog posts. Many disabled people caught wind of it, and soon ‘spoonies’ became a term some disabled people decided to call themselves.
Many disabilities can eat up a person’s energy, which makes navigating the tasks in a day difficult. The spoon theory has become a useful tool in discussing energy-limited diseases and how we navigate them. In a way, it offers abled-bodied people a glimpse into the lives of disabled people, and that can assist in fostering empathy.
Using spoon theory can build a narrative that describes disability in a relatable way. This can help with unlearning biases about what disabled people can or can’t do. Often, abled-bodied (nondisabled) people unconsciously react to disabled people by speaking and behaving as if they know more than disabled people about the disabled person’s own limitations and needs. Spoon theory helps break down that bias to reveal the truth of the disabled person’s experience, which can help open dialogue between us and others.
PACING AND ABLEIST NARRATIVES
When I attempt to describe the above to people, some people will ask why I just don’t push through and overcome this. Our culture teaches us from a young age that the only way to success is through pushing oneself hard, to not give up, to see the body as a tool to force into the mold one needs to succeed. Except that’s not how bodies function; the body isn’t a machine but a living organism that can easily break down due to illness, injury, insufficient nutrition or oxygen, allergies, etc.
Overcoming one’s own body pushes the consequences overextending ourselves to a future date, where our bodies will retaliate and force us to rest. Some people term this burn-out, which is a lovely term that encompasses not just a physical crash but also an emotional and/or mental crash.
That’s another phenomenon that people do not realize is possible — we can crash due to being overwhelmed from emotions or heavy mental activity. For example, many a friend, who worked on their PhD, admit to feeling burnt out by the time they finish. They often did little physical activity but intense mental activities, so they share frustration and confusion with me on why they feel burnt out. Part of that frustration stems from the narrative society and/or our parents built that dismisses the impact heavy mental activities have on a person’s wellbeing and health. We may be unaware this narrative exists within us, but recovering from burnout often can’t progress until we unlearn that biased narrative.
Our brain uses twenty percent of our body’s energy, and when we are engaged in a cognitive activity this can increase energy usage between five to seven percent depending on the task. We often forget how our brain is the most energy-taxing organ in our body. So when it is heavily used without must rest, our brains can decide enough is enough and force us into resting because not enough energy exists to execute the cognitive activity.
For abled-bodied — as in non-disabled people — many are in denial about these realities. They simply do not wish to acknowledge their bodies have limits, that they might someday end up disabled. The narrative about disability being bad stems from society’s classifying disabled people as a disposable class. Even if a person may not be taught directly this history, these narratives of disabled people as ‘less than’ can still be instilled in a person just by navigating their capitalist society’s productivity norms.
Marta Russel writes in Capitalism and Disability about the origin of disability as a disposable class:
“With the advent of capitalism, people were no longer tied to the land, but they were forced to find work that would pay a wage — or starve; and as production became industrialized people’s bodies were increasingly valued for their ability to function like machines.
Bosses could push non-disabled workers to produce at ever increasing rates of speed. Factory discipline, time-keeping and production norms broke with the slower, more self-determined and flexible work pattern into which many disabled people had been integrated.’ As work became more rationalized, requiring precise mechanical movements of the body, repeated in quicker succession, impaired persons — the deaf or blind, and those with mobility difficulties — were seen as — and, without job accommodations to meet their impairments, were — less ‘fit’ to do the tasks required of factory workers, and were increasingly excluded from paid employment…”
This focus on production shifted the values of society more toward who is productive versus who is not productive. It built a narrative around this ideology and socialized it into the workforce through job trainings, various educational experiences, and how we are taught about the world in childhood by parental figures and educators.
In turn, these narratives built a negative connotation around disability. Russell continues:
… as a result, disabled persons came to be regarded as a social problem and a justification emerged for segregating them out of mainstream life and into a variety of institutions, including workhouses, asylums, prisons, colonies and special schools…
.. being categorized as ‘disabled’, however, and the subsequent impoverishment that so many face when struggling to survive on disability benefits, serves another class function: it generates a very realistic fear among workers of becoming disabled. At base, the inadequate safety net is a product of the owning class’s fear of losing full control of what they do with the means of production; the American work ethic is a mechanism of social control that ensures capitalists a reliable work force for making profits. If workers were provided with a social safety net that adequately protected them through unemployment, sickness, disability, and old age, labour would gain a stronger position from which to negotiate their conditions of employment. American business retains its power over the working-class through a fear of destitution that would be weakened if the safety net were to actually become safe.”
Within capitalist societies, this narrative of disposable classes unconsciously influences how we react to limitations, to disabled people in general, and to witnessing someone experiencing hardships.
People often may not realize how much historical views, events, and ideologies can influence our interactions and how we are socialized today. These unconscious biases and unexamined narratives influence how we react to other people, to situations, and how we navigate our days.
Disability, due to how capitalism prioritizes production, has been labeled ‘disposable,’ and capitalism often uses it as a fear tactic to control the workforce. This bias then becomes embedded within the narratives people unconsciously build about themselves and other people. in turn, those narratives can often be painted over the person we interact with, thus failing to see the person as they actually are.
In the case of that gaming group, several members, who engaged in ableist microaggressions, had failed to examine their own biases about limitations, disabled people, and narratives of productivity. So when I presented them with my marginalized experience that directly contradicted their unexamined narratives, they choose to react defensively rather than meeting me halfway to build understanding.
Understanding often fails when these biased narratives, especially denial of one’s limitations, turns a person too defensive and retaliatory. Often in these cases, the person who tried to hold them accountable is punished for speaking up. This breaks down trust within the group, impedes understanding, and seeds the group with negative narratives surrounding conflict, limitations, and accountability.
Yet, we cannot fully realize our own potentials without assessing our limitations and examining the narratives we tell ourselves. Our bodies are not limitless energy sources no matter how carefully we care for it, and anyone can become ill or injured at any time, which can limit oneself further. The idea society taught us of “overcoming our limitations” sets an impossible standard that often injuries people in attempts to reach that perfect state. It is far healthier to find ways to work around our limitations, while respecting what our bodies have to tell us.
Pacing is the term used to describe how one works within their limitations, while respecting what truths our bodies may share about such limitations. For those of us with energy-limited diseases, we must learn the art of pacing, but this concept isn’t unique to disabled people.
Everyone needs to pace themselves in order to navigate a day, but they may not realize that is what it is. When people craft schedules and determine what they will work on in a day and what they save for another day — that’s the start of pacing work. The next step is facing one’s limitations and factoring our health and wellbeing into planning.
However, if the person is in denial about their limitation, if they have attached themselves to society’s perfection ideal, they increase the risk of burnout, injury, and/or illness. It also blocks understanding of other people, thus breaking attempts at dialogue.
Part of unlearning that harmful narrative of denial about limitations involves addressing the narratives we build about ourselves and other people. We cannot build healthier communities if we are unable to address the unexamined narratives and biases that poison our waters.
The narratives we tell ourselves play a major role in all we think and do, so it is crucial to examine them if we are to build empathy and dialogue with one another. This takes effort and work to allow oneself to be held accountable for harms done, and to unlearn inaccurate and biased narratives. This journey isn’t easy to do, but then building truly loving and healthy communities is never easy.
To end on a hopeful note, Amanda Leduc, a disabled author, writes:
“If society is used to not seeing disabled people in stories, society becomes used to not seeing disabled people in real life. If society is used to not seeing disabled people in real life, society will continue to build a world that makes it exceedingly difficult for disabled people to participate in said world, thus perpetuating the problem. In this world, there is no need for a wheelchair ramp because hardly anyone who wins an award will need one to get onstage. But what if we took it for granted that anyone, regardless of ability, might be able to achieve [that award], and built our stages and our environments accordingly?
It is time for us to tell different stories.”
#accountability #biases #buildingCommunity #chronicIllness #communication #disability #disabilityJustice #disabled #empathyBuilding #health #laborHistory #mentalHealth #narratives #oppression #stereotypes
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Narratives, Pacing, and Conundrum of Ableism
The day starts cold, the wind brisk, and the pain I feel simmers at the usual 5 out of 10 pain scale. It is rare for it to drop below 5, even with pain meds like Tynelol, but after awhile, the body grows accustomed to the pain, making it an annoying background noise at best. Other days it consumes my awareness like a furious tornado, and that is when I know the flare-up has started.
When it comes to being disabled, I’m hyperaware of many different factors, which I have to be to navigate a world that is often not accessible and a minefield of ableism. To avoid the minefield, I hyperanalyze the words I say, and will try different communication styles.
This can prove exhausting over time because I am a human being not a programmable robot. Thus when I am upset, I tend toward very direct language to describe why I’m upset and my exact emotions.
NARRATIVES WE TELL OURSELVES
The narrative I tell myself has its roots in how I was socialized growing up, the experiences I’ve had throughout my life, the oppression I’ve faced, the healing and good things I’ve done, and the harmful things I’ve done. No one person is ever perfect, but some may feel that drive to be perfect, to set impossible standards. I have spent many an hour examining the narratives I tell myself in order to unlearn the biased and unhealthy narratives that impede communication and empathy.
Some of the narratives we hold derive from societal narratives. For example, we live in a culture that villianizes neurodivergent communication and thinking styles, thus being direct can be viewed as ‘aggressive,’ ‘too emotional,’ and/or ‘illogical.’ Even if we provide logical and rational thoughts, because of the ‘directness’ the content of our words is ignored in favor of how the neurotypical, non-disabled person perceived our tone. A story is written in their head that superimposes over us, and thus we cease to be a person. Tone-policing is one way this retaliation to our words can manifest, through the critiques of our ‘tone’ and dismissing of the content of our words.
When we interact with one another, we build stories of ourselves and those people in our head. If we are not conscious of this act, the stories built often are riddled with stereotypes about various groups of people rather than based on who the person actually is. These stories — or narratives — are also influenced by the culture within which we live, our upbringing, societal norms, community norms, and how we’re educated and by whom and various historical events.
Humans are a story-telling species. We love to share stories with one another, and through this sharing of stories, we create community and a sense of safety. Building community can also go awry the same way our story-telling may — the biases that society socialized into us can contaminate the community-building if left unchecked. Unlearning our biases is a life-long practice and not easy to do, but if we are to build authentic, accessible, inclusive, and loving communities then the work of unlearning biases must be done.
It takes effort and practice to meditate on the stories we build of others and the places in which we exist. By meditating on the stories we craft, we can carefully edit the biases and untrue narratives and replace with more accurate evidence based on what is shared with us, what we witness, and knowledge we’ve gained. This skill must be taught and practiced, and even then, it is still possible to run awry of biases that sneak in periodically, especially if we have not yet admitted or discovered the bias within ourselves.
However, when people’s biases are confronted, regardless of how — whether directly or subtly — defensiveness may rear up to blockade communication and retaliate against whoever confronted us.
As a disabled trans queer person, I have learned that confronting people on their biases and microaggressions can cause this defensiveness, where they cease to see me as a person. Instead, a story is built up for them to defeat, which in turn dismisses my words in order to preserve their view of themself as a ‘good person.’
It is this attachment to ‘being a good person’ that can stifle our growth and ability to build community with others. Lama Rod Owens in Love and Rage: the Path of Liberation through Anger writes:
“We’ve learned how to pack everything away, because we’re really invested in being good people. You may say, “I am a good person. I am not a misogynist. I am not transphobic. I’m a good person.” Sometimes being a good person or my attachment to being a good person actually gets in the way of me looking at all the rough spots, at all the shadows that I’m working with.”
That story all of us have built of ourselves is often riddled with unconscious biases, especially if we are unwilling to acknowledge those biases exist.
For example, in a gaming community I frequented, a member would consistently ignore what I shared about obstacles I faced due to the systems within our society and within communities. In response, this person would say: “The only obstacle is yourself, and you can overcome anything!”
Except this is a denial of everything I’d shared about obstacles outside my control. When I confronted the person to attempt a dialog about how hurtful this ableist microaggression was, the person became defensive and retaliated. Other people jumped in to join sides and it transformed into a battleground instead of being a simple dialog. In the end, the harm caused by that person’s words ends up brushed aside as the dialogue becomes about their feeling uncomfortable at being held accountable.
When another person seeks to hold us accountable, they are trusting us with the knowledge of their hurt, and they are sharing hope that healing and growth can still occur. Being held accountable isn’t meant to be an attack or to label someone as ‘bad,’ but meant to build community and dialogue for healing. Conflict will happen in any community, but if the conflict is brushed aside to keep the illusion of ‘peace and harmony’ than those harmed are further wounded by this lack of empathy and care. The narratives the group has built around accountability become an impediment to their growth and empathy.
In the Beyond Survival Anthology, Kai Cheng Thom’s essay called ‘What to Do when You’ve Been Abusive,’ has a list of steps to assist people on that journey toward accountability and healing. Thom writes:
“‘The first step: Learn to Listen When Someone Says You Have Hurt Them.’ When one has been abusive, the very first — and one of the most difficult — skills of holding oneself accountable is learning to simply listen to the person or people whom one has harmed:
- Listening without becoming defensive.
- Listening without trying to equivocate or make excuses.
- Listening without minimizing or denying the extent of the harm.
- Listening without trying to make oneself the center of the story being told.
When someone, particularly a partner or loved one, tells you that you have hurt or abused them, it can be easy to understand this as an accusation or attack…”
Part of the reason one may fall into seeing it as an accusation or attack is this attachment to ‘being a good person.’ In the case of that gaming group, the person refused to accept my experience because it collided with what they thought ‘being a good person’ is. I had disrupted their story of their own self, and instead of sitting with that uncomfortable feelings and working through it, the person lashed out instead.
The attachment we have to ‘being a good person’ often is the root of our defensiveness. Other roots may be wounds a person has that they are in denial about or are in the process of healing, or roots in how they are socialized.
So when defensiveness happens, it places those harmed in an impossible position — how do we hold dialogue with the other person without placing ourselves in danger of being hurt further? If the other person will not meet us halfway by enacting Thom’s steps, then healing cannot happen. That wound between me and the other person causes a rift, that can easily become impassable.
Lama Rod Owens writes:
“Look at how the narratives keep us from actually doing the really important work of liberation within our own experience. It’s not supposed to feel good. It’s supposed to be hard. It’s supposed to be really uncomfortable. If it were easy and fun, everyone would be doing it.”
“People come to me and say, “Oh, this practice that you gave me, it hasn’t helped me feel good.” I get that, because when I started my practice, it didn’t feel good either. I felt as if I was suffering more. I wasn’t. I was finally paying attention to how I’ve always felt. It’s really not fun, but it definitely gets better. It gets better because I learned how to get really curious about my experience. I learned how to be re-embodied and to actually understand that all these really difficult experiences I was having were composite — there were all these different pieces of things smashed together.”
The socialization we received as children often wounds us by instilling biases that create narratives that stunt our growth. As Owens wrote, unlearning biases, seeking to heal the wounds within us, and letting go of our attachment to ‘being good’ is not easy to do. It will be hard, but it is the only way to truly grow as a person and build more holistic and healthier communities.
Part of understanding our own narratives requires us to understand not just our biases but also our strengths, weaknesses, triggers, and especially our limitations. For disabled people, understanding our limitations is forced on us by the nature of our disability, thus we must consider our limitations in order to navigate a day without causing painful flare-ups or other frustrating and/or painful reactions within our bodies.
When I do trainings about disability or about trans issues, I often ask participants to step into our shoes for a day. To imagine themselves living the narrative disabled and/or trans people often face. I may use myself as an example or a friend may assist me and offer up their narrative. We then walk the participants through our stories, and through that, we can build a shared empathy. That empathy becomes the foundation for further dialogue.
NAVIGATING A DAY
So how do I navigate a day as a disabled trans and queer person? The first step for me is analyzing my energy. I do this partly based on how I feel and some of my vitals, but I must also carefully analyze each step I take. I must analyze the words I say and who I share my story with — where I must assess the risk level with sharing based on where I am, who is present, and whether there is a safe way to exit if the situation turns toxic or too exhausting to continue.
Before I get ahead of myself, I’ll start with how I pace my actions to avoid painful flare-ups that can leave me bedridden. I start this practice when I am still in bed.
I open up the Visible app and log my sleep and vitals — this app was made for disabled people by disabled people and uses a mathematical formula based on research to calculate a score between 1 and 5 for my stability for the day. It does this by detecting the pulse in my finger and the minute changes in skin coloration from the blood flow in my finger. Today rates me a three and suggests I pace myself gently today. To simplify this analyzing, I use spoon theory, where each spoon represents energy required to do a task.
I slowly sit up to take my morning/day meds for the day. I keep a cup of water by my bed for this purpose. Cetaphil Face Cleanser sits by my bed, so I can do a dry bath. I rub it on my face and neck and a few other areas and wipe it away, which uses up half a spoon. I can’t do my whole body as that would be one too many spoons, so I leave it at that.
I pet my cats and slowly stand — if I stand too quickly I become lightheaded and may pass out — then I grab my mobility device (cane, arm crutches, rollator, or wheelchair) and navigate to the bathroom to use the toilet, dress for the day, and brush my teeth. This takes half a spoon. I have now used up one spoon simply waking up and washing up for the day.
After the bathroom, I prepare a cup of tea and select a morning snack. I return to my bedroom and assess my energy levels again. Preparing for the day has used two spoons, and I have only five today. On other days I might have six spoons, but I generally sleep and stay in bed all day to prepare for six spoon days.
Since I only have three spoons left, I boot up my computer to write, check email, check Discord and/or Signal chats, and listen to music. This will use up two spoons. That leaves my final spoon for my cats, where I feed them and play with them and clean their litter boxes.
When it is time for bed, I will take my night meds, wash up in bathroom, and read or play puzzles on my phone with its blue-light filter on until I fall asleep. This is half a spoon that I often forget to account for throughout my day.
If I plan to leave the house, I must rest the day before to prepare for a six spoon day, where five spoons is used to leave the house, go to my destination, do the activity or appointment at my destination, and return home to recover and care for my cats. Thus I only have one spoon for washing up, cat time, and eating.
If I take a shower, I will lose up to two spoons, which is why I schedule showers for a day where I do not need to leave the house. On days I must leave the house, I resort to a dry bath using Cetaphil cleanser and Rinse and Clear shampoo/conditioner.
Sometimes I must use up spoons I simply don’t have. When I push myself like this, those spoons come from future days, meaning I will crash. A crash describes how the body, overcome with fatigue from lack of sufficient energy or from intense pain will resort to forced rest, where one simply can’t get up do to an activity. On those days I have no choice but to rest as my body will not be responsive to much else. Crashes can last days, and for some disabled people can cause a backslides in their pacing and/or healing journeys.
By walking through what navigating my life is like and inviting others to do the same, where we endeavor to keep an open mind, to actively listen, we can lay a foundation for further dialogue and understanding. It’s part of how we rebuild our internal narratives.
SPOON THEORY
Since I have evaluated how I navigate my day using ‘spoons,’ let’s discuss what exactly spoon theory is.
It was developed by Christine Miserandino, when she spoke to a friend in early 2000s about her Lupus. She decided on spoons to illustrate to her friend the difficulties of navigating through a day. She asked her friend to describe how she walked through a day, but Christine would gently interrupt and share how each task cost either a full spoon or half a spoon — brushing her teeth, showering, leaving the bed and dressing, making breakfast or tea, eating breakfast, cleaning up after breakfast, preparing to leave, getting in the vehicle, the act of driving, leaving the vehicle, entering the destination, etc.
Since she had limited spoons it meant each time she left the house, she had to carefully evaluate whether she had energy for anything else. The friend was stunned because just describing her own day and using Christine’s limited spoons meant the friend wouldn’t make it through the day safely.
Christine shared this theory at the 2010 Lupus Conference and in various blog posts. Many disabled people caught wind of it, and soon ‘spoonies’ became a term some disabled people decided to call themselves.
Many disabilities can eat up a person’s energy, which makes navigating the tasks in a day difficult. The spoon theory has become a useful tool in discussing energy-limited diseases and how we navigate them. In a way, it offers abled-bodied people a glimpse into the lives of disabled people, and that can assist in fostering empathy.
Using spoon theory can build a narrative that describes disability in a relatable way. This can help with unlearning biases about what disabled people can or can’t do. Often, abled-bodied (nondisabled) people unconsciously react to disabled people by speaking and behaving as if they know more than disabled people about the disabled person’s own limitations and needs. Spoon theory helps break down that bias to reveal the truth of the disabled person’s experience, which can help open dialogue between us and others.
PACING AND ABLEIST NARRATIVES
When I attempt to describe the above to people, some people will ask why I just don’t push through and overcome this. Our culture teaches us from a young age that the only way to success is through pushing oneself hard, to not give up, to see the body as a tool to force into the mold one needs to succeed. Except that’s not how bodies function; the body isn’t a machine but a living organism that can easily break down due to illness, injury, insufficient nutrition or oxygen, allergies, etc.
Overcoming one’s own body pushes the consequences overextending ourselves to a future date, where our bodies will retaliate and force us to rest. Some people term this burn-out, which is a lovely term that encompasses not just a physical crash but also an emotional and/or mental crash.
That’s another phenomenon that people do not realize is possible — we can crash due to being overwhelmed from emotions or heavy mental activity. For example, many a friend, who worked on their PhD, admit to feeling burnt out by the time they finish. They often did little physical activity but intense mental activities, so they share frustration and confusion with me on why they feel burnt out. Part of that frustration stems from the narrative society and/or our parents built that dismisses the impact heavy mental activities have on a person’s wellbeing and health. We may be unaware this narrative exists within us, but recovering from burnout often can’t progress until we unlearn that biased narrative.
Our brain uses twenty percent of our body’s energy, and when we are engaged in a cognitive activity this can increase energy usage between five to seven percent depending on the task. We often forget how our brain is the most energy-taxing organ in our body. So when it is heavily used without must rest, our brains can decide enough is enough and force us into resting because not enough energy exists to execute the cognitive activity.
For abled-bodied — as in non-disabled people — many are in denial about these realities. They simply do not wish to acknowledge their bodies have limits, that they might someday end up disabled. The narrative about disability being bad stems from society’s classifying disabled people as a disposable class. Even if a person may not be taught directly this history, these narratives of disabled people as ‘less than’ can still be instilled in a person just by navigating their capitalist society’s productivity norms.
Marta Russel writes in Capitalism and Disability about the origin of disability as a disposable class:
“With the advent of capitalism, people were no longer tied to the land, but they were forced to find work that would pay a wage — or starve; and as production became industrialized people’s bodies were increasingly valued for their ability to function like machines.
Bosses could push non-disabled workers to produce at ever increasing rates of speed. Factory discipline, time-keeping and production norms broke with the slower, more self-determined and flexible work pattern into which many disabled people had been integrated.’ As work became more rationalized, requiring precise mechanical movements of the body, repeated in quicker succession, impaired persons — the deaf or blind, and those with mobility difficulties — were seen as — and, without job accommodations to meet their impairments, were — less ‘fit’ to do the tasks required of factory workers, and were increasingly excluded from paid employment…”
This focus on production shifted the values of society more toward who is productive versus who is not productive. It built a narrative around this ideology and socialized it into the workforce through job trainings, various educational experiences, and how we are taught about the world in childhood by parental figures and educators.
In turn, these narratives built a negative connotation around disability. Russell continues:
… as a result, disabled persons came to be regarded as a social problem and a justification emerged for segregating them out of mainstream life and into a variety of institutions, including workhouses, asylums, prisons, colonies and special schools…
.. being categorized as ‘disabled’, however, and the subsequent impoverishment that so many face when struggling to survive on disability benefits, serves another class function: it generates a very realistic fear among workers of becoming disabled. At base, the inadequate safety net is a product of the owning class’s fear of losing full control of what they do with the means of production; the American work ethic is a mechanism of social control that ensures capitalists a reliable work force for making profits. If workers were provided with a social safety net that adequately protected them through unemployment, sickness, disability, and old age, labour would gain a stronger position from which to negotiate their conditions of employment. American business retains its power over the working-class through a fear of destitution that would be weakened if the safety net were to actually become safe.”
Within capitalist societies, this narrative of disposable classes unconsciously influences how we react to limitations, to disabled people in general, and to witnessing someone experiencing hardships.
People often may not realize how much historical views, events, and ideologies can influence our interactions and how we are socialized today. These unconscious biases and unexamined narratives influence how we react to other people, to situations, and how we navigate our days.
Disability, due to how capitalism prioritizes production, has been labeled ‘disposable,’ and capitalism often uses it as a fear tactic to control the workforce. This bias then becomes embedded within the narratives people unconsciously build about themselves and other people. in turn, those narratives can often be painted over the person we interact with, thus failing to see the person as they actually are.
In the case of that gaming group, several members, who engaged in ableist microaggressions, had failed to examine their own biases about limitations, disabled people, and narratives of productivity. So when I presented them with my marginalized experience that directly contradicted their unexamined narratives, they choose to react defensively rather than meeting me halfway to build understanding.
Understanding often fails when these biased narratives, especially denial of one’s limitations, turns a person too defensive and retaliatory. Often in these cases, the person who tried to hold them accountable is punished for speaking up. This breaks down trust within the group, impedes understanding, and seeds the group with negative narratives surrounding conflict, limitations, and accountability.
Yet, we cannot fully realize our own potentials without assessing our limitations and examining the narratives we tell ourselves. Our bodies are not limitless energy sources no matter how carefully we care for it, and anyone can become ill or injured at any time, which can limit oneself further. The idea society taught us of “overcoming our limitations” sets an impossible standard that often injuries people in attempts to reach that perfect state. It is far healthier to find ways to work around our limitations, while respecting what our bodies have to tell us.
Pacing is the term used to describe how one works within their limitations, while respecting what truths our bodies may share about such limitations. For those of us with energy-limited diseases, we must learn the art of pacing, but this concept isn’t unique to disabled people.
Everyone needs to pace themselves in order to navigate a day, but they may not realize that is what it is. When people craft schedules and determine what they will work on in a day and what they save for another day — that’s the start of pacing work. The next step is facing one’s limitations and factoring our health and wellbeing into planning.
However, if the person is in denial about their limitation, if they have attached themselves to society’s perfection ideal, they increase the risk of burnout, injury, and/or illness. It also blocks understanding of other people, thus breaking attempts at dialogue.
Part of unlearning that harmful narrative of denial about limitations involves addressing the narratives we build about ourselves and other people. We cannot build healthier communities if we are unable to address the unexamined narratives and biases that poison our waters.
The narratives we tell ourselves play a major role in all we think and do, so it is crucial to examine them if we are to build empathy and dialogue with one another. This takes effort and work to allow oneself to be held accountable for harms done, and to unlearn inaccurate and biased narratives. This journey isn’t easy to do, but then building truly loving and healthy communities is never easy.
To end on a hopeful note, Amanda Leduc, a disabled author, writes:
“If society is used to not seeing disabled people in stories, society becomes used to not seeing disabled people in real life. If society is used to not seeing disabled people in real life, society will continue to build a world that makes it exceedingly difficult for disabled people to participate in said world, thus perpetuating the problem. In this world, there is no need for a wheelchair ramp because hardly anyone who wins an award will need one to get onstage. But what if we took it for granted that anyone, regardless of ability, might be able to achieve [that award], and built our stages and our environments accordingly?
It is time for us to tell different stories.”
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