Category Archives: Uncategorized

Field Tested Rules for Crrpls

Rules for crrpls: do not ever ever ever ever ever imply that DISability rights is part of the larger struggle for universal human rights, against racism, sexism, gender justice and class power.

Rules for crrpls:  Don’t impose yourself on real social justice movements, attempt to infuse DISability rights into discussions of marginalization, or insist, provide suggestions or even resources that would enhance DISability access in the larger human rights struggle.

Rules for crrpls: Keep your political activism limited to organizations that focus on DISability rights and issues of access that don’t interfere with real social justice work, even if and when those organizations exclude you either because they are run by nonDISfolx, white folx, people with social and economic capital or a professionalized staff not interested in grassroots organizing.

rules for crrpls: When people try to help you, always be grateful. Never contradict them or try to explain what you really need. This will hurt their feelings (enrage them). They’re really doing their best (trying to make themselves feel good at your expense), and it’s not like you deserve to actually have a say in your agency, body autonomy or full inclusion.

rules for crrpls: Do not get offended when people make fun of your health condition or physical or emotional characteristics. Certainly don’t interrupt their fun by pointing out the arrogance, bigotry and entitlement inherent in making fun of people’s afflictions and certainly DON’T turn the tables by making fun of them, when they give you that tired excuse “we’re just kidding, lighten up.” When they say, “anything goes” that doesn’t REALLY mean that you can make THEIR entitled asses the butt of your jokes.

Rules for crrpls:  Don’t ever assert that Disability rights has any place in the larger struggle for social justice and human rights. these people are working hard enough for social justice to have to find time and resources to include your sorry ass.

Rules for crrpls:  Appear grateful and upbeat at all times, and if you can, provide material for the inspiration of people without DISabilities.– You know: paint with your feet, walk on your hands, sing out of your ass– stuff like that. They love that shit.

Rules for crrpls:  Never appear more capable than someone without a DISability. This embarrasses them and interferes with their entitled sense of superiority. There’s nothing worse than appearing less capable than someone already labeled incapacitated.

Rules for crrpls:  Do not discuss your DISability in public. Discussion of DISability is the purview of those who do not have DISabilities, so they can appear magnanimous and generous.

rules for crrpls: Do not say “excuse me” if someone is blocking your way and is deep in conversation. Wait patiently until they are finished. Also, do not attempt to go around them, because they might bump into you and this would startle them.

Rules for crrpls: Don’t ask if an event that is open to the public or that you’ve been invited to, is ACTUALLY accessible. this is rude, as it puts the host on the spot and risks causing them embarrassment.

Rules for crrpls:  Don’t show up to an event that isn’t accessible. This too may lead to the embarrassment of the host. You should magically know with your other hyper sensitive enhanced sensory abilities, if an event is accessible or not.

Got any  more? Leave them in the comments…..

 

On Vaccines, Autism and Systemic Bigotry

Compiled by Emma Rosenthal, Dis-ability rights activist, educator, mother, daughter of immunologist, actually.

How do Vaccines Cause Autism: http://howdovaccinescauseautism.com/

“Even if I humor anti-vaccine activists and for a second believe that vaccines cause autism in 0.01% of children they’re administered to (spoiler alert: vaccines don’t cause autism), I am still deeply disturbed that these people are more afraid of people with disabilities than they are fatal, painful and endemic diseases. If cognitive disabilities are more threatening to you than children never getting to grow up because polio makes a comeback, you have priorities to reevaluate my friend. Shame on you for brainwashing mothers and fathers into believing that autism is the absolute worst thing that can happen to a person.” http://millennialjournal.com/2015/03/24/vaccines-the-fear-of-autism-and-the-globalization-of-indifference/

Image of a tweet. Text:  Zach Weinersmith‏Verified account  @ZachWeiner   Follow  More Wait. If autism-spectrum people are over-represented in the sciences... wouldn't that imply that... autism causes vaccines?! RETWEETS 2,017 LIKES 2,547 Mahima RanaJenny ParhamA Staccato SemibreveAidan MouseAndrewmyaccountgothackedJasmine VanceHNCANAN 10:14 AM - 22 Feb 2016

Description: Screen shot of a tweet. Text: From Zach Weinersmith (@ZachWeiner) on Twitter: “Wait. If autism-spectrum people are over-represented in the sciences… wouldn’t that imply that… autism causes vaccines?!” https://twitter.com/ZachWeiner/status/701832529309872129

mage of a cartoon by Zach Weiner. Two people talking. One says

Cartoon by Zach Weiner

This list is a work in progress with newer articles posted at the top of the page, with the date they were posted:

This list is also maintained on the Facebook Page: Radical DISability: https://www.facebook.com/notes/radical-disability/on-vaccines-autism-and-systemic-bigotry/1728498904054211

  • PETA Embraces Autism Pseudoscience http://sciencebasedmedicine.org/peta-embraces-autism-pseudoscience/

  • Autism Occurrence by MMR Vaccine Status Among US Children With Older Siblings With and Without Autism http://jamanetwork.com/journals/jama/fullarticle/2275444
    Breaking new study from JAMA on the lack of any link of vaccines with autism. “In this large sample of privately insured children with older siblings, receipt of the MMR vaccine was not associated with increased risk of ASD, regardless of whether older siblings had ASD. These findings indicate no harmful association between MMR vaccine receipt and ASD even among children already at higher risk for ASD.”
  • “In light of the role of the immune system in these central nervous system (CNS) conditions, the impact of vaccines on childhood-onset neuropsychiatric diseases had been considered and was mainly addressed with regards to the administration of the measles, mumps, and rubella (MMR) vaccine (and its various components) and the subsequent development of autism spectrum disorder (ASD). Although the controversy over MMR vaccination and ASD still exists for some members of the public, this association has been convincingly disproven (9, 10).”
    Temporal Association of Certain Neuropsychiatric Disorders Following Vaccination of Children and Adolescents: A Pilot Case–Control Study http://journal.frontiersin.org/article/10.3389/fpsyt.2017.00003/full

  • “Measles is one of the most contagious and most lethal of all human diseases. A single person infected with the virus can infect more than a dozen unvaccinated people, typically infants too young to have received their first measles shot. Such high levels of transmissibility mean that when the percentage of children in a community who have received the measles vaccine falls below 90 percent to 95 percent, we can start to see major outbreaks, as in the 1950s when four million Americans a year were infected and 450 died. Worldwide, measles still kills around 100,000 children each year.”
    How the Anti-Vaxxers Are Winning https://www.nytimes.com/2017/02/08/opinion/how-the-anti-vaxxers-are-winning.html?_r=0
  • American Academy of Pediatrics Vaccine Safety: Examine the Evidence https://www.aap.org/en-us/Documents/immunization_vaccine_studies.pdf

Cartoon image with six boxes of dialogue, in three pairs. In the first pair of boxes one parent says

Howbabycomics.com

Word Matters/Words Matter:

On ableist language, the words we
use and alternative discourse

Also posted on the Facebook page of Radical DISability
https://www.facebook.com/notes/radical-disability/word-matterswords-matter-on-ableist-language-the-words-we-use-and-alternative-di/1746544745582960

This is a work in progress of a collection of links on ableist language, with the most recent additions on the top of the page.

 Links

Alternative Discourse

When we give up ableist language we leave room for actual analysis and discourse. Ableist language is essentially supremacist, so if we’re really fighting for social justice, stigmatizing people with cognitive, physical or emotional DISabilities not only perpetuates the marginalization of DISfolx, but also obscures the real problem with what every behavior or ideology we’re calling out. For example, when we say “Stupid White Men”, we not only disparage people with cognitive DISabilities, we also give capitalism, imperialism and institutional racism and sexism, a pass. We fail to provide real analysis, and instead resort to lazy name calling. When we CALL IT WHAT IT IS, instead of using ableist slurs, we actually provide the possibility for deconstructing systems of oppression instead of simply rebranding bigotry to fit one’s own entitled supremacy based on superior intellect or ability.

Stay tuned. More to be added in the future!

Plus Sized Women of a Certain Age

Or: Who Brought Girdles Back?

All the plus models are young, all the older models are thin and some of us wear flats! So what’s up with the heels and the spanx? Our grandmothers wore girdles. We gave up that shit in the 60s and now the fashion industry is convincing an entire generation of young women to bring them back.#spanxaregirdles #nospanxnothanx #heelsdontdefinebeauty#wecantalllooklikejanefondalillytomlindianekeatonandkateysegal #pantsuitsareugly  What do women of a certain age wear? Plus Model Magazine????

You can follow me on facebook at: https://www.facebook.com/emmarosenthal

Facebook screenshot of the fb post from my page, with the text of this blog post

Dangerous Neighborhoods: Cyber abuse, harassment and threats: Women online.

BY Emma Rosenthal

A constant work in progress, new material to be added until the abuse stops. 

Most people when abused, cyber stalked, harassed and bullied, quietly go away. This makes it easier to start over. There is no trail of them making a fuss. Fewer people will know about the abuse. Because abuse attracts more abuse. Once you are marked as a target there is a popular notion that you brought it on yourself, that there must be some truth to the accusations, that you are an easy mark.
I am not a good victim. I go down screaming. I leave nail marks in the wall. I spin the wheel of the car to escape. I write about it. I will tell the story. I want my victimization to be known. I want those who read this language to be warned. I leave a map so others will know where it is safe to tread. I do not give my abuser the luxury of moving on, not that easy.
I am disappointed in many people who run away. Who do not talk down the abuse, who pretend it is not their comrade or their community. Who participate in the illusion that it is ever about the victim or their reaction, or that this is at all personal.
There are models of community accountability. Public ostracism, threats and character assassination is never acceptable. We must start to understand too, that when one person is targeted, none of us is safe. Bullies will choose the most vulnerable, but that doesn’t make the online abuse any less a community issue. Supporting the victim is a collective responsibility. Failure to do so is a collective failure.
Abusers that go unchallenged will continue to abuse, will gain power each time they are allowed to get away with the abuse.
 Those committing character assassination must hurl accusations they know are not true. If they were true, one could rebut, respond, make amends, demonstrate accountability. This would not serve the assassin. For the assassin it is important to destroy the opponent, not change them. A series of false accusations, to which the accused can’t honestly confess is much more powerful in providing the illusion that the person under attack is not willing to dialogue, not willing to take responsibility. But one cannot be responsible for the false accusations hurled at them, like stones at a stoning. It is the fault of the one who throws.
In our on line lives, proof is so much easier than in our analog world. Before believing an abusive tirade or an underhanded compliment demand proof. Don’t go along for the ride. Accountability requires evidence. Make them show receipts.

LINKS: (Most recent additions listed first, so that readers who have visited this post before, can find new material at the top of the list. Articles are not in chronological order, but rather the order in which I encountered them.- Emma)

  • ““We want to make the internet safer. The people who are disproportionately impacted by harassment are women and particularly women of color. Those voices are systematically harassed and over time they’re excluded, because they have to go out and take care of themselves,” says May. “There’s hope out there in believing that strangers give a shit about you, they’re not just out to harass you.” ”
    https://www.bitchmedia.org/article/new-website-helps-bystanders-support-victims-online-harassment
    A NEW WEBSITE HELPS BYSTANDERS SUPPORT VICTIMS OF ONLINE HARASSMENT

  • “More people are finally taking notice of the abuse. But there’s still a dearth of discussion on why it’s happening. The culprit isn’t anonymity, often the go-to answer for why the Internet can’t have nice things. Instead, it’s believing in the exceptionality of the Internet—and online gaming—that allows the abuses within, and it is enabled every time someone utters, “It’s just a game.”That phrase is the machine to which oppressive power dynamics are the ghost. How many times have you heard someone say “It’s the Internet; you shouldn’t take that seriously”? This kind of thinking supports the idea you can do anything you want with no consequences, when in all actuality, virtual actions like sexual harassment, stalking, abuse, prejudice in all of its forms—racism, sexism, transphobia, or all of the above—do have consequences.”
    https://www.bitchmedia.org/article/game-changer-0  GAME CHANGER WHY GAMING CULTURE ALLOWS ABUSE… AND HOW WE CAN STOP IT

  • For months, trolls have harassed other people involved with Ghostbusters—they were immediately out in force when director Paul Feig announced that he was filming last summer, harassing Feig for daring to remake the classic film with an all-women cast. But the onslaught of racist and sexist hate that people directed at Jones is unparalleled compared to what other cast and crew members received. In an industry where Black women seldom land starring roles in major releases—a mere 10.8% of speaking roles go to Black characters—it’s demoralizing to see Jones targeted in this way when she should be celebrating instead.”
    https://www.bitchmedia.org/article/trolls-target-leslie-jones-ghosbusters-racist-abuse TROLLS TARGET LESLIE JONES OF “GHOSTBUSTERS” WITH RACIST ABUSE

    • “All we do by feigning ignorance is allow the propagators to move on to another target (as one friend said), fester and lash out harder, continuing to believe they’re invincible.Leslie’s approach was to showcase the hate she was receiving, encouraging people to actively call out and address the hate groupies. I think we need to consider doing this proactively rather than waiting for things to boil over. As several have said—including Leslie—the majority of people online aren’t bad but the bad ones are the loudest.
      If we can make our love louder and show the racists, bigots, sexists, and all the rest that we’re not letting them dominate our discourse, we can make real change. We can prevent more of these hate campaigns. We can drive the bad out and refuse to let them profit off of their message.
      But it has to start now, and it’s going to take more effort than just reacting.”
      https://www.amalanetwork.com/2016/07/19/gamergates-war-against-ghostbusters-and-leslie-jones/   GamerGate’s war against Ghostbusters and Leslie Jones
  • “On Thursday, Ioffe answered a phone call from an anonymous caller who played a Hitler speech. She received another call from “Overnight Caskets”. On Twitter, users posted photos of her face superimposed on a mug shot from Auschwitz. The Daily Stormer, a white supremacist site, attacked Ioffe in a blogpost titled: “Empress Melania Attacked by Filthy Russian Kike Julia Ioffe in GQ!””
    https://www.theguardian.com/us-news/2016/apr/28/julia-ioffe-journalist-melania-trump-antisemitic-abuse

    Journalist who profiled Melania Trump hit with barrage of antisemitic abuse

  • “It is not hard to see that a society that tells us to just “get over” being called an “ape nigger” because it’s “just the internet” would also be perfectly fine telling us to “get over” slavery because it’s “in the past” and to “get over” the murder of black people by cops because “they should have complied.” It is not hard to see that a society that tells us to “get over” being told that someone hopes we “are raped to death” because it’s “just the internet” would also be perfectly fine telling rape victims to “get over” their rapes because it’s just “boys being boys.””
    https://theestablishment.co/we-shouldnt-get-used-to-online-abuse-9c97340278e4

    We Shouldn’t Get Used To Online Abuse

  • “Lewis-Hasteley has also been surprised by some of the reaction to the growing campaign to protect women writers from this verbal abuse. “Someone asked me if I didn’t realise that I wasn’t really going to be raped. But the threat of sexual violence is an attack in itself, and some commentators have their Facebook pages searched, and their home addresses tracked. It’s a real feeling of being hunted by these people.”” https://www.theguardian.com/world/2011/nov/05/women-bloggers-hateful-trolling Women bloggers call for a stop to ‘hateful’ trolling by misogynist men

  • “The neo-Nazi website The Daily Stormer published a list of more than 50 Twitter users who had expressed fear about the outcome of the 2016 election, urging its readers to “punish” them with a barrage of tweets that would drive them to suicide.” https://www.usatoday.com/story/tech/news/2016/11/10/white-supremacists-urge-trolling-clinton-supporters-suicide/93617792/  White supremacists urge trolling Clinton supporters to suicide
  • “Gaming communities are mourning the death of prominent transgender game developer Rachel Bryk, who committed suicide on April 23.  Bryk, 23, was plagued by chronic pain, which she told friends was a result of rheumatoid arthritis and fibromyalgia. She took her own life by jumping from the George Washington Bridge, which connects Manhattan to New Jersey, something she discussed on social media platform ask.fm in the days before her death.Over the past two years, Bryk had become one of the most prominent game developers on a software project called Dolphin. She was well-known for her work on Gamecube and Wii emulators—her favorite being Pucca’s Kisses. Despite her beloved status in online gaming communities, Bryk commented on a popular 4chan forum that she was withdrawing from various sites because she suffered constant, trans-phobic harassment. After her death, word quickly spread throughout these communities, and forums were flooded with memorial posts in her honor, and tributes to her work and collaborative nature.”  http://www.vocativ.com/culture/lgbt/transgender-developer-rachel-bryk-commits-suicide/ Online Troll Urges Game Developer Rachel Bryk To Commit Suicide


  • https://mic.com/articles/144228/echoes-exposed-the-secret-symbol-neo-nazis-use-to-target-jews-online#.IxDNSqLMQ  Echoes Exposed: The Secret Symbol Neo Nazis Use to Target Jews Online”  (It should be noted that many Jews including this writer, have owned this identifier. That’s MS (((Emma Rosenthal))) Thank you very much)
  • “This is gaslighting on the macro-level, and it permeates subtly through the internet and into professional spaces. The dismantling of trust in terminology, lived experiences, and scholarship are devastating blows to many who are trying to survive slow violence and build thriving, successful careers and existences.” https://modelviewculture.com/pieces/flickering-the-gaslight-tactics-of-organized-online-harassment Flickering the Gaslight: Tactics of Organized Online Harassment

  • “It’s time we discussed the radicalisation of angry, young white men in a similar way. The manosphere gave us Elliot Rodger. He was a regular on the forum “PUAhate” – populated by bitter men who had tried the techniques advocated by so-called “pick-up artists” to attract women and failed.Reading through the posting history of individual aliases, it’s possible to chart their progress from vague dissatisfaction, and desire for social status and sexual success, to full-blown adherence to a cohesive ideology of white supremacy and misogyny. Neofascists treat these websites as recruitment grounds. They find angry, frustrated young men and groom them in their own image. Yet there’s no Prevent equivalent to try to stamp this out.”
    https://www.theguardian.com/commentisfree/2016/nov/15/alt-right-manosphere-mainstream-politics-breitbart We need to talk about the online radicalisation of young, white men
  • “One floor of the school’s dorms held the fraternity Kappa Alpha Order. She noted that the way to spot the floor was every window held a Confederate flag.“Those flags never let me forget that I was not wanted at any point in history, not then and not now, not in my temporary home, the place where I slept, the place my mother was spending her hard-earned money to send me,” Clayton said.
    After writing the wrenching article, someone sent her a link to an opposing article written by someone at the school calling her a liar. They said the discrimination conservatives face now comes at the hands of those seeking “diversity,” which “is an attack on whiteness.”
    Not long after, she found out about Adkins posting an article about attacking non-Republicans on the website she works for. It even references her experience. He claimed that within his first week on campus he’d already made enemies simply because he was a Republican.
    “After I wrote the piece that I wrote I was v worried about people not believing me,” Clayton wrote on Twitter. “I was flat out called a liar by some. I was called a liar by people who went to school with me, people who saw that sh*t happened. So, I worried about not being believed [sic].””
    http://www.rawstory.com/2017/04/buzzfeed-writer-responds-in-horror-after-trump-fan-who-once-attacked-her-online-hacks-student-at-her-alma-mater/  Buzzfeed writer horrified to learn that Kentucky machete attacker was her online troll

  • “Twitter, for the past five years, has been a machine where I put in unpaid work and tension headaches come out. I write jokes there for free. I post political commentary for free. I answer questions for free. I teach feminism 101 for free. Off Twitter, these are all things by which I make my living – in fact, they comprise the totality of my income. But on Twitter, I do them pro bono and, in return, I am micromanaged in real time by strangers; neo-Nazis mine my personal life for vulnerabilities to exploit; and men enjoy unfettered, direct access to my brain so they can inform me, for the thousandth time, that they would gladly rape me if I weren’t so fat.”
    https://www.theguardian.com/commentisfree/2017/jan/03/ive-left-twitter-unusable-anyone-but-trolls-robots-dictators-lindy-west
    I’ve left Twitter. It is unusable for anyone but trolls, robots and dictators

  • http://www.cnn.com/2016/12/01/health/teen-suicide-cyberbullying-trnd/index.html?sr=fbcnni120216teen-suicide-cyberbullying   Teen who was relentlessly bullied kills herself in front of her family

  • “These ruthless attacks and harassment go beyond personal disagreements. The language used in these attacks are often deliberately chosen from the pool of women-focused, racial, or gender-identity based slurs. This affects not only the person targeted but also the bystanders, creating a chilling effect for women thinking of participating in public life. In an article on Mother Jones, Jaclyn Friedman, the executive director for Women, Action and the Media, says “The idea that a social-media network should be entirely neutral is a myth, [n]eutral platforms are only neutral for straight white dudes. These companies need to make a decision: Do I want to be making a money off of a platform where abusers and harassers feel more comfortable than the abused and harassed?”The irony is that while those flinging these insults or participating in harassment cry free speech as a justification, they limit others in their ability to speak freely.” http://www.policymic.com/articles/6… 6 Insidious Ways Social Media Can Be Used to Silence Women
  • https://vimeo.com/44544403 Ill Doctrine: Why I Will Feed The Trolls If I Damn Well Want
  • https://www.facebook.com/NowThisNews/videos/1050620138361443/ Watch men read the hateful tweets that female sport writers deal with everyday -Moderators have the obligation to forbid this abusive behavior, delete it, and ban and block the abusers. This is not free speech, this is abuse and harassment. Free speech is their right to create their own venue for this crap. This includes activists in our own spaces, groups, pages and walls. NO ABUSE.

  • Hilde Kate Lysiak, a 9-year-old reporter who wrote about a suspected murder in her small Pennsylvania town, has defended herself after some locals said a young girl should be “playing with dolls” and not covering serious crime: “If you want me to stop covering news, then you get off your computer and do something about the news. There, is that cute enough for you?”  https://www.theguardian.com/media/2016/apr/06/nine-year-old-us-reporter-defiant-after-critics-say-go-back-to-playing-with-dolls

    Nine-year-old US reporter defiant after critics say ‘go back to playing with dolls’

  •  “She had been getting bullied for a long time, to the point where the happy, bubbly girl that I knew changed,” she said. “They hacked into her email and they created a Facebook page and they massacred her.” http://thegrio.com/2015/03/06/mother-bullying-online-teen-suicide/  Mother Says Cyber-Bullying Drove 14-Yr-Old Daughter To Suicide

  • “73% of women have experienced cyber violence, according to a new report “Cyber violence is just as damaging to women as physical violence, according to a new U.N. report, which warns women are growing even more vulnerable to cyber violence as more and more regions gain internet access.” http://time.com/4049106/un-cyber-violence-physical-violence/  U.N. Says Cyber Violence Is Equivalent to Physical Violence Against Women 
  • http://www.unwomen.org/~/media/headquarters/attachments/sections/library/publications/2015/cyber_violence_gender%20report.pdf
  • “Ignore the barrage of violent threats and harassing messages that confront you online every day.” That’s what women are told. But these relentless messages are an assault on women’s careers, their psychological bandwidth, and their freedom to live online. We have been thinking about Internet harassment all wrong….None of this makes me exceptional. It just makes me a woman with an Internet connection. Here’s just a sampling of the noxious online commentary directed at other women in recent years. To Alyssa Royse, a sex and relationships blogger, for saying that she hated The Dark Knight: “you are clearly retarded, i hope someone shoots then rapes you.” To Kathy Sierra, a technology writer, for blogging about software, coding, and design: “i hope someone slits your throat and cums down your gob.” To Lindy West, a writer at the women’s website Jezebel, for critiquing a comedian’s rape joke: “I just want to rape her with a traffic cone.” To Rebecca Watson, an atheist commentator, for blogging about sexism in the skeptic community: “If I lived in Boston I’d put a bullet in your brain.” To Catherine Mayer, a journalist at Time magazine, for no particular reason: “A BOMB HAS BEEN PLACED OUTSIDE YOUR HOME. IT WILL GO OFF AT EXACTLY 10:47 PM ON A TIMER AND TRIGGER DESTROYING EVERYTHING.”  http://www.motherjones.com/mixed-media/2014/01/amanda-hess-why-women-arent-welcome-internet  Amanda Hess: “Why Women Aren’t Welcome on the Internet”
  • Flaming Women: Personal Attacks on Listserves and the Penis Proletariat https://cafeintifada.wordpress.com/2008/08/08/flaming-women-personal-attacks-on-listserves-and-the-penis-proletariat/
  • “”Anyone who is suffering from shame and public humiliation needs to know one thing: you can survive it,” Lewsinsky said. She said her role in a presidential sex scandal turned her into “patient zero” for online bullying, and that she was branded “a tramp, tart, slut, whore, bimbo, and, of course, ‘that woman.'”
    Cybertrolls increasingly target women http://www.cbsnews.com/news/cyberbullying-cybertrolling-increasingly-target-women-monica-lewinsky-ashley-judd/ 

 

The Amazing Disappearing Emma

Or “Emma, Emma where have you been?”

Well I’ve not been here or my other blogs as much. Mostly I’ve been on facebook, where interaction is more immediate. I post my informal rants, which initially would have shown up here, on facebook, where I can have more interaction. People respond there. The comments here are not as interactive and not as frequent. There’s a hierarchy between blogger and reader that isn’t a factor on facebook. So facebook changed the way I use blogging.

And I got tired of writing up every, single. time. I. endured. humiliation. or. abuse.

With DISability, it’s everywhere, every time we leave the house, and often in our homes too.

I’ve changed the way I write DISability. I used to write it “dis-ability”, but write it “DISability”, now. Both writings emphasize the social construct of DISablement– that it is what is done TO us, that it is not what ever condition or nonconformity we have, but rather, the social construct of isolation, segregation, institutionalization, discrimination, clientization, infantilization, etc. But “dis-ability” won’t show up in an internet search for “disability”, and “DISability” does. So I think that’s an improvement.

I’ve also (going back to the indignities) added the lexicon that distinguishes caretaker from caregiver. How significant and curious that these two words are considered synonyms. Since when is “taker” and “giver” the same? So I use “caretaker” to mean an abusive person who is assigned or assumed the care of a DISabled person, as opposed to “caregiver” who is someone who gives empathic, attentive and loving care. Clever, huh? Thanks! I think so.

I’ve also been really, really busy, and focused on survival, the house, getting through the day, managing my health, dealing with the imposition of aging, staying closer to home.

Recently I’ve limited my social interaction, including on facebook, which is perhaps why I’m blogging again. The abuse of DISfolx is just so rampant, and socially tolerated, especially in social justice, human rights and educational communities and environments.  It’s just unbearable. As I’ve said before, I can expect a humiliating, dangerous or violent experience almost every time I leave the house. So I’ve withdrawn a bit. I go out when I have to, shop on line when I need things, work out of my home, create community closest to where I live, and budget the amount of abuse I have to sustain. Or so I thought. I was happy working here, at DragonflyHill Urban Farm, working with people I love, creating a supportive community, where each person’s needs isn’t seen as a burden, but an opportunity for greater sustainability. (For example, my inability to stand for long periods of time, means I need meals prepared for me, resulting in our huge community breakfasts, and everyone starting the day together, with a healthy meal.) And then the city proposed a home sharing ordinance that would wipe us OUT. I’ve been writing about that a lot on the DragonflyHill blog, and will be writing more, in the coming days. I’m especially interested in how the rhetoric against home sharing pretends it’s a violation of housing, human, DISability, workers, rights, when it is ESSENTIALLY about all of those. Home sharing provides jobs and housing for people, many of whom are outside of the labor force, including people with DISabilities, undocumented workers, formerly incarcerated and otherwise marginalized folx.

There’s also the illusion that it’s passive income, when it is not. We work so hard here–all of us– essentially domestic work, which is why those pretending home sharing is taking away jobs and housing, can get away with that assertion. Shame on them for perpetuating and exploiting devalued and essential domestic labor as easy and valueless.

Getting this business off the ground has been a daunting task, and what little strength I have has gone into this. I think we’ve finally got to a point where I can clear my head enough to even consider blogging again, more regularly. Social media is mostly my job on the farm, and I think I’ve finally found my groove.

Andy, Xeres, Glenda and I have also launched, are launching The WE Empowerment Center, to make the benefits of nonprofit status and the nonprofit industrial complex, more accessible to ordinary folx. We’ve streamlined the application process and made it easier for people who may not have the organizational social capital to get in the game.

We have facebook pages, blogs, web pages, and EVERYTHING!
https://twitter.com/DHillUrbanFarm
https://www.facebook.com/DragonflyhillUrbanFarm
https://www.facebook.com/weempowermentcenter

And, I’ve updated my photography page, complete with images of the house and everything we did to get it ready for where we are today.

emmarosenthal.smugmug.com

And yes, I COULD get my own URLs for each of these, but I like giving credit to the interface I’m using. It’s more of a commons, a gathering place. So smugmug, or wordpress, brings it all together.

So see you on my other sites, and here, between the sheets, In Bed With Frida Kahlo.

Against the expectation of patient obedience and conformity

What happened yesterday at the Dr’s office. (The draft of a letter)

The medical establishment has become more and more demanding that patients behave obediently and passively. This is no way to involve people in their own healing and health, but it does give the health care workers and providers a distorted and dangerous sense of power and entitlement.

Yesterday I went to see a my doctor. I was just reassigned to her as I had seen her once before but had tried two other doctors since and decided to come back to her (but that’s another story). I showed up with my partner, Andy, who is also her patient. He has been seen at that office by that staff for years now.

We showed up for what I had been told (at the time the appointment was set and in two telephone confirmations) was a 3 PM appointment. When we got there (I always go with a witness and support) the receptionist told me i had a 3:45 appointment, and had a series of excuses and explanations for why I had been misinformed. I complained about this totally inexcusable lack of respect for my time, energy and health. (With fibromyalgia, sitting in chairs is very painful and unhealthy.) They told me the DR would be with me soon, but actually didn’t see me until 3:50. I suggested they compensate me at doctors’ wages. No one saw the humor in that. HM.

They took me (and Andy) back to a room and told me I wouldn’t be waiting long. We had the distinct impression they were just trying to get my complaining butt OUT of the waiting area.

It didn’t help that when the medical assistant/nurse (not sure), CONNIE asked me to step on the scale, I politely refused. She was visibly and verbally annoyed at my refusal and kept arguing with me about why I had to get on the scale, and I was politely and repeatedly assertive that I indeed did not.

She was what I call “California polite.” It’s actually not polite at all. It comes from a place of deep disgust and a total refusal to meet the needs of someone one is supposed to be taking care of. Key phrases include “I can’t help you when you’re upset” “You need to calm down.” “I’m just doing my job.” It is full of false concern and visible contempt.

We met with the doctor who finally saw us an hour after we arrived, and 50 minutes after the stated but only 5 minutes after the apparently secret real time time of my appointment. The appointment went well and the basic intentions of my appointment were met. YAY! because often that’s not an easy process. The doctor was helpful, concerned and supportive.

While waiting for the doctor, we noticed a sign on the wall admonishing patients against using any equipment and that if we did, the clinic was not liable for injuries. This surprised me, that the concern was not for patient safety, but rather clinic liability.

When CONNIE came in to draw blood for tests, she brought someone with her, who we found out was her supervisor KIM. I had never had a supervisor brought in so my blood could be drawn. I’m an easy stick and it went by uneventfully, but it was evident that CONNIE had felt she needed some back up to take blood from me.

Then I was told to meet with CONNIE out by the desk and set up another appointment. When we got to the desk I asked for a chair, that standing sent shooting pains down my legs and I can’t stand long. There were several office chairs around that no one was sitting in. CONNIE refused. I suggested she just let me sit in one of the office chairs, and with the most smug and condescending tone, told me she could get me a wheelchair. It was rhetorical. Most people who “don’t need” a wheelchair, won’t sit in one. There’s a lot of power in putting someone in a wheelchair as opposed to both of us sitting in a “real chair”. I said that was fine, that she needed to get me a wheelchair. Not that one was immediately available. I remained standing and waiting, at which point I decided to sit down in one of the empty chairs, which meant going behind the nurse’s station. The other nurse/medical assistant explained to me that the office chairs were on wheels and I could fall and this was why I couldn’t sit in those chairs, and called security. There didn’t seem to be any concern that I could fall if I was standing up, having just told them that I can’t stand up for long. the other nurse/medical assistant called the supervisor. At that point the wheelchair and CONNIE showed up and I moved to my assigned seat. CONNIE was visibly smug and clearly entitled to my obedience, even at the point of my discomfort, and danger.

If the concern is of liability, certainly denying a person a chair as a reasonable accommodation would put the agency at risk. The experience I had as a disabled person requesting a simple accommodation is sufficient grounds for damages and litigation.

As it was, I did mention to the other staff as CONNIE went to fetch a wheelchair, that I had read the waiver of liability for use of equipment and was willing to take my chances. Given years of experience sitting in chairs, in retrospect, I think I was more than qualified in the use of such specialized and dangerous equipment.

Supervisor Kim showed up again, just as CONNIE was ratcheting up the conflict with very aggressive demands to silence me, and get me to point of passive obedience. This is the pathologizing of anger. I had already been given orders about where to put my body (on a scale), made to wait 50 minutes, not because the DR was behind schedule, but because I had been told to arrive 45 minutes in advance of the secret time of my appointment. At one point I was asked if I didn’t want to go into the waiting room and wait while my husband got my appointment. I said I did not, and that I wanted to participate in my own treatment and setting of my own appointment. At this point CONNIE was now speaking very loudly about me, in the open hallway, with a play by play of my disobedience. It came out that she had considered me a security threat initially when she brought in Supervisor Kim to observe the blood draw. I was angry but clear and countered CONNIE’s demands by pointing out that if I were the security risk she seemed to think I was, CONNIE’s behavior was only going to escalate the situation. If I was really a threat, CONNIE’S behavior certainly wasn’t going to diffuse the situation. In my anger, I pointed out that I was upset, but that I was clear and focused and able to articulate my concerns. Asking for A CHAIR is the most simplest form of accommodation, and if the office chairs are so dangerous, the staff shouldn’t be required to use them, either. (RIGHT?). I stated that anger itself does not make someone a security risk that it is a normal and healthy emotion when one is being mistreated and that my passivity is not assured in the face of mistreatment. Supervisor Kim listened and presented as someone who was supportive and concerned. Meanwhile CONNIE called someone and asked to speak with them and left, returning a little later with the broadest, smuggest smile on her face. She seemed very confident that her mistreatment of me was an entitlement and one that would not cause her any discomfort or reprimand from her employer, that the obedience of patients, not our own ability to advocate for ourselves at the point of medical service, was an expectation and sewn deep into her job description.

Still angry, and now having trouble walking, because that’s what happens when you mix (iatrogenic) stress and fibromyalgia, I was still talking to Supervisor Kim. I suggested, proactively, that to avoid this problem in the future, I remain seated in the exam room while the nursing staff makes my appointment. (This way I don’t interfere with their seating assignments). I also said that I did not consent to have CONNIE read my medical records and I refused to have CONNIE work with me in the future.

If patients are going to be participants in our own health care, we have to be treated with respect, which includes respect for all our health issues (including mental health diagnosis), not using those diagnosis or our status as patients as evidence against us. Our agency and bodily autonomy has to be respected and requests for simple accommodations needs to be understood as a basic human right. The medical establishment is not exempt from the requisites of reasonable accommodations (like an available chair during the intake and release stages of the appointment.)

If we have to sit in the wheelchair, which is a very powerful way of reinforcing the power dynamic, when a stationary or office chair would suffice, one should be immediately available.

Staff should be empowered to provide chairs and other accommodations to patients, should be trained in patient agency and autonomy and especially in crisis management and how to deescalate a conflict, not provoke one.

If my very simple assertions of body autonomy are rare in a medical office, then along with your diabetes, nutrition, yoga classes and other classes offered to patients, your clientele needs support in how to assert themselves with medical personnel and such assertions need to be respected, not seen as a threat.

When a patient cannot ask for a chair or refuse to stand on a scale, they will certainly not be comfortable with asserting their needs in more pressing matters against even more entitled personnel, like doctors and hospital administrators. This makes patient participation in our own healthcare, including raising issues of concern, voicing a difference of opinion, providing essential medical or personal history (especially if that history will be used as justification for abuse by medical personnel) even more difficult and unlikely. Staff should be encouraging patient and customer input and requests to make our visit healthier and more comfortable, not ratcheting up our marginalization and passivity as a point of entitlement and staff comfort.

I left the office devastated and exhausted. Having lost almost an hour of my time due to the miscommunication of my appointment time, and another hour asserting my right to be a dissatisfied customer against the expectations of patient obedience and conformity, I cancelled the other events I had scheduled that evening. I have only so much energy for these sorts of indignities and have learned to budget my outrage by limiting my exposure to the CONNIEs of the world and the institutions that empower that total lack of empathy and compassion.