Inaccessibility Fatigue Rag

7/16/17

I am tired of negotiating my humanity to strangers.

Or trusting friends who just don’t understand.

Of trying to fit my body into spaces that do not accommodate me.

Only to be told how difficult I am to those who fit in, just right.

I am tired of accommodations to fads and fashions, to power and privilege but that DISability access is too demanding, or we did that the last time, we can’t do that EVERY time.
I am tired of loving  a world that doesn’t love me back.

I am tired of patience and desire.

I am tired of betrayal when an apology would be enough—mine or theirs.

I am tired of excuses and abuses.
I am tired of pity and scorn, and entitlement and hatred.

I am tired of the modern versions of the ugly laws and the look of disgust and contempt upon seeing me, by strangers who have no idea who I am.

I am tired of ableist jokes and insults
I am tired of abuse substituted for love, because there are good quiet crrpls and demanding shrews who need to be tamed.
I am tired of character assassinations when their arguments are no match for mine or because they will not be held accountable for their lack of real solidarity.
I am tired of infantilization and being treated like a child.

I am tired of excuses and favors because DISfolx aren’t seen as resources in our own experience.
I am tired of offense taken to be out argued or out spoken by a person like me, uppity, articulate crrpl that I am.

I am tired of having to ask for accommodations only to be treated with hostility for even posing the question.

I am tired of assumptions and accusations of  people who know nothing but think they know everything, like why if I can walk up stairs one day, in one location, why I can’t another day in another location.

I am tired of entitlement of others to define for me the parameters of my reality.

I am tired of people deciding for me what I need, what I should be happy with, what I should like and how I should behave.

I am tired of people who never read a single book on DISability access, schooling me and ‘splaining to me how it’s going to work.

I am tired of people who seem to be allies, only to find out that they were keeping score all along, and anything they did to create access was weighed against my next request. I didn’t know you were keeping a running tab and that I was now in debt to you.
I am tired of pity and stares and stairs.
I am tired of “well no one else complained” or “there were other DISabled people there so it must be accessible.

I am tired of the assumption that if I’m the only one complaining that others must be comfortable when really it means that others may be silent because they don’t feel comfortable speaking up, and some people will harm themselves trying to fit in, and others won’t show up at all because they know the risk in asking.

I am tired of blaming the victim, of disparaging a complaint, of killing the messenger, of the cult of positivity, of silencing dissent.

I am tired of those who don’t need accommodations deciding without even a dialogue what access means.

I am tired of the expectation of gratitude for half a ramp, or one day’s effort or half measures in general.
I am tired of trying to fit into public spaces at all.

Words to Roll By:

  • Black Lives Matter
  • DISability inclusion always, all days,  every way
  • LGBTQIAA affirmative

    Wood or linoleum cut. Black letters on brown and white background. Text: If you have come to help me you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together. Aboriginal Activist Group

    – Lilla Watson, Aboriginal Activist

  • Gender justice
  • Free Palestine
  • Refugees have right of passage & right of return
  • Antisemitism is racism
  • Fat is a DISability issue
  • The only safe borders are open borders
  • U.S. out of North America (yeah, you read that right)
  • Indigenous rights now
  • Universal human rights
  • Universal humanity
  • Workers’ Rights
  • A woman’s place is in the world
  • Trans sisters are women
  • LOS MARINES NO PASARAN!
  • DIALOGUE MATTERS
  • HONOR THE TREATIES
  • No ban, no Wall!
  • IF IT ISN’T INTERSECTIONAL IT ISN’T CLASS STRUGGLE
  • CLASS STRUGGLE IS KNOWING WHICH SIDE OF THE FENCE YOU ARE ON, CLASS ANALYSIS IS KNOWING WHO IS THERE WITH YOU (anonymous poster c 1970)
  • Decolonize!
  • Socialism the means of production
  • Honor youth
  • Respect your elders!
  • Age in place!
  • No means no!
  • Radical consent!
  • Healing is a community issue.
  • Health care is a human right

    White text on dark blue background over two hands holding each other in a u-shape under text. Text: If you're truly intersectional in your activism and advocacy you're going to make a lot of enemies.

    -Emma Rosenthal

  • No blood for oil
  • No U.S. imperialism
  • Antifa
  • Prison abolition
  • No torture
  • Bullying is bigotry
  • Solidarity not charity
  • Exclusion serves the oppressor. Inclusion serves the struggle
  • Nothing without all of us: Justice not just us.
  • Housing, education, health care are basic human rights
  • Honor the earth
  • physical beauty isn’t a virtue
  • Down with white supremacy
  • Don’t cross a picket line
  • Fight the labor aristocracy
  • Nothing changes without a complaint
  • Never Again
  • Never Again Anyone
  • I remember the Armenian Genocide
  • Jihad means struggle.
  • This is my jihad…

If I left you out, let me know, because none of us is free unless all of us are free.

ANY QUESTIONS? DO YOU HATE ME NOW? UNFRIEND ME UNFOLLOW ME.
Some bridges need to be burned

Resurrecting Assassinated Characters And The Geometry of Inclusion:

If: you are  starting to recognize that ableism an actual real and essential component of white supremacy, capitalism, exploitation,  imperialism, colonization, patriarchy, racism, sexism, cissexism and heterosexism, and that we can’t fight injustice while insisting that access is a personal issue that is the responsibility of the “afflicted”, but is rather, a the collective responsibility of the community, the whole community, every community,

Then:

  • You need to start doing more than simply adding “ableism” to your list of ism, and “DISability” to your list of marginalities.
  • You need to stop bringing in out of town DIS-rights stars to do workshops, instead of local activists who you or the movement has pushed out for so long.
  • You need to stop finding ways to appropriate the work of DISabled activists,
  • And stop using the label “neurodivergent” to justify your abusiveness, (even if it is rooted in PTSD or any other real condition and experience).
  • You need to stop excluding on the basis of who isn’t “cool” enough, or pretty enough for your revolution.
  • You have to make way for wheelchairs and walkers, scooters and canes and give up scented products.
  • You have to include DISfolx in all your planning, and incorporate us into your organization as central resources.
  • You have to have workshops at your events, and you have to attend them!
  • You have to read the work of DISrights activists.
  • You have to give up your supremacist language and attitudes that allowed you to feel entitled toward exclusion in the first place.
  • You need to stop seeing DISfolx as the location of your savior image, your charity case and as central comrades in the struggle.
  • And you have to resurrect the characters you’ve assassinated instead of stepping over our bodies and claim DISability stardom for  your sad self, adding “DISability” and “ableism” to your rhetoric.
  •  You need to publicly make amends to everyone you DISmissed, DISassociated, DIShonored, DISparaged and DIScouraged before YOU DIScovered DISability.
  • You need to account for your tone policing, and your faux-pologies, and your identity baiting and every other sad excuse you had for why it was okay to tell someone their participation was derailing or decentering, or privileged or entitled.
  • Not just sometime.
  • Not just when it’s convenient.
  • Not just until your other REAL IN THE STREETS REVOLUTIONARIES tell you to stop or make it inconvenient.
  • You need to account for the lies, slander, misinformation and DIStortions you employed to silence, isolate and chastise anyone who dared attempt the dialogue, who even asked “Can I get my wheels in the door to this event?”, who commented “When you tell those who agree, to rise, you exclude us, and implicate us in the cohort of the oppressors”, who dared to suggest that strategies and protocols be developed and shared, who attempted to include you in that dialogue only to have you turn against them with your admonitions.
  • You need to resurrect their reputation and bring them back, hold others who maintain this exclusion, accountable.
  • You need to employ a methodology of inclusion and discard the tired old practice of self promotion and exclusion  and movement stars that insists that inclusion means less for those who already have voice, even if it is the seemingly small voice within movements of resistance, especially if it is the seemingly small voice within the struggle.

Because we can’t win against bigotry and hegemony and oppression,  if we are perpetuating it ourselves,we can’t be antifa without all the targets of fascism in the movement, and we can’t win this fight without everyone poised for battle. 

DISability Word Matters

EMMA’S LEXICON

This post is under constant construction (and deconstruction) as nuanced language is needed to define experiences and identities as our perceptions shift and change. This is a rewrite of a post from many years ago, for example.)

DISabled (formerly Dis-abled): One who has a non-conforming body or mind, that others are able to dis  without fear of social consequence. she is dis-abled.

DISability (formerly Dis-ability): the ability to be dissed without fear of any social consequence for the offender due to a due to a physical, cognitive or emotional non-conformity. she has a dis-ability.

I capitalize and emphasize “DIS” in order to begin to deconstruct the way we think about DISability. To begin to look at it as something that society imposes on a person or a group of people, not a condition inherent in that person or group. Derivatives would include: DISmiss, DISparage, DISrespect, DIScourage, etc.

ENabled: the opposite of DISabled. Someone who has those qualities, characteristics, identities, capacities that are considered favored and are accommodated without consideration. People who don’t use wheelchairs for example, don’t consider having chairs provided for them at gatherings or events, as a special accommodation to their particular needs. Public staircases, maintained at public expenses, or any other public accommodation that is routinely provided to them without special consideration isn’t considered, is accepted as a norm, while those accommodations for people who are DISabled are seen as burdensome or at best, special and exceptional.

Medical Model of DISabilty—the idea that the person has a condition that needs fixing, changing or curing and that any problem the person has with society is due to their own condition or impairment.

Social model of DISability–  Distinguishes between impairment (the condition) and DISability—social exclusion.  For example, I am totally capable of participating in conferences, classes, and forums,  as a speaker,  an audience member, a student and as one of the organizers. But if there were steps (a social/physical construct) into the facility, I would be prevented from attending. It is not my impairment that would prevent my participation, but rather, the social construct of stairs, a decision that architecture takes priority over diversity.

PWD– Person with a DISability.

PWOD-Person without a DISability. I don’t like the term able bodies, because it implies that dis-ability has to do with impairment, and not social exclusion. It also ignores mental and cognitive dis-abilities.

Acceptable Marginalities: Words and phrases that contribute to the marginalization of PWDs:  Retard Stupid Schizo Crazy Nuts Idiot Dumb Deaf  (turn a deaf ear) Blind (the justices were blind to the issues raised in the case.) Lame

These terms are used quite freely to describe and insult people who are not PWDs. The use of these terms assumes and perpetuates the marginalization and the acceptability of marginalization of PWDs. Example of similar types of marginalizing language are “That’s so gay.” Or the use of the term black, to denote something bad—black magic, black idea, black mood, black humor, black mark, black sheep, as well as the way men will call each other girls or ladies when insinuating that their friends aren’t man enough.  Words matter or we wouldn’t use them.  https://inbedwithfridakahlo.wordpress.com/2016/11/13/word-matterswords-matter/

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…..

 

Dear Meryl Streep: No Abled Savior Needed

By Daniel Au Valencia

This article was originally published by Autistic actor Daniel Au Valencia on their blog, Acting NT. The entire text and accompanying imagery are copied here with the author’s permission.

Meryl Streep has managed to make headlines by attacking the world’s lowest-hanging fruit: Donald John Trump. Apparently it is viewed as an act of bravery to stand up to the most blatantly and visibly racist, ableist, misogynistic, xenophobic, homophobic, transphobic, and all around assholish public figure of modern times. It is especially brave to do so as a wealthy abled white cis woman, in the process of receiving a nationally televised award.

At the Golden Globes ceremony on January 8th, 2017, Meryl Streep received the Cecil B. DeMille Award, and used part of her acceptance speech to dredge up a year-old news item: Donald Trump publicly mocking the mannerisms associated with arthrogryposis, the visible disability of Pulitzer prize-winning journalist Serge F. Kovalevski. I call him that, not because I particularly value awards or titles (I didn’t even watch the Golden Globes when it originally aired, and I’m an actor), but because Kovalevski doesn’t appear to name himself a member of any disability rights movement, nor focus his journalism on disability topics. Thus a description of him as a “Pulitzer prize-winning journalist” seems to contain far more relevant information than “disabled reporter” does.

As I and many others pointed out over a year ago, referring to the mocking of a disabled person as some unspeakable evil, or as “the final straw” to sever support of Trump’s campaign, is actually ableist. Mocking a disabled person qualifies as evil, certainly, but it is not more evil than creating a mandatory Muslim registry like the Nazis did with Jews. It is not more evil than grabbing women by the pussy without their consent. And it is clearly less evil than repealing the Affordable Care Act, effectively killing millions of mostly disabled people, not just making fun of us. Why weren’t any of those things the final straw? Why is mocking disability met with greater outrage than actions that are objectively, measurably more harmful, to other minorities and specifically to disabled people? The answer to that question lies in the subtext, something all actors love, within Meryl Streep’s rhetoric:

“It sank its hooks in my heart… It was that moment when the person asking to sit in the most respected seat in our country imitated a disabled reporter. Someone he outranked in privilege, power and the capacity to fight back. It kind of broke my heart when I saw it.”

The underlying tone, neatly bookended here, is pity. Just as disabled people merely living our lives is inspiring and heartwarming, on the flip-side directly interacting with a disabled person in a mean way is a low blow, kicking someone while they’re down. Of course in reality, being disabled doesn’t mean we’re “low” or “down” in the first place (unless you’re literally talking about wheelchairs or dwarfism, neither of which describe Pulitzer prize-winning journalist Serge F. Kovalevski).

Making fun of disabled people is the unforgivable sin of the 21st century, not because ableism is bad – the speech didn’t even contain the words ableism, discrimination, or bigotry – but because disabled people are already so tragic and vulnerable. Hiring people who aren’t disabled to play us in movies is fine. Taking away our civil rights, that’s fine. Literally murdering us, no problem. Just don’t point and laugh. Meryl Streep says we lack “the capacity to fight back.” While it’s true that the president of the United States generally has more power than a given New York Times editor, first of all, Donald Trump hadn’t yet been elected to any public office at the time, and second, Pulitzer prize-winning journalist Serge F. Kovalevski can and has responded to Trump in the way that he himself saw fit. There is no abled savior needed to defend him.

Potentially the most troublesome word choice in the speech is when Streep said that Trump “imitated a disabled reporter.” Not mocked, imitated. What happened to the old adage “imitation is the sincerest form of flattery”? I seriously doubt that Pulitzer prize-winning journalist Serge F. Kovalevski felt flattered by Trump’s childish antics. Meryl Streep, did you mean to imply that acting in the manner of a disabled person is what damned this action, not the fact that it was done for the sake of mockery? When an abled actor plays a disabled character, what’s shameful isn’t the stolen opportunity, but that a disabled character is portrayed at all? Maybe that’s why you didn’t even mention Kovalevski by name. He’s just “a disabled reporter” to you, stripped of his personhood and of all his accomplishments. You also managed to mention the recently passed, openly bipolar Carrie Fisher, but as “Princess Leia” – neither disabled nor a person! You disrespected them just as much as you deservedly disrespected Trump. As you said in the very same speech, disrespect invites disrespect, so maybe I should call you “shit head” or something instead of Meryl Streep.

As I often say in presentations about autism, two people who are both ableist are always on the same page, even if they say and genuinely believe they’re not. If you’re a parent using Floortime to manipulate your child into acting neurotypical, you’re not some radical revolutionary. You’re not special for disagreeing with those in the ABA industry, ’cause actually, you agree with them. You agree that disabled people should not be allowed to be visibly disabled in our mannerisms, and your actions reflect that. If you’re a doctor who says that vaccines don’t cause autism, but if they did, you’d have to be “monstrous” to still administer them, then you don’t disagree with anti-vaxxers. Not when they say being Autistic is worse than having polio. Hey Shit Head, do you think being disabled is inherently shameful? That being visible to the world, with uniquely disabled mannerisms, is shameful? If so, you and a guy who’s basically famous for being an asshole are in total agreement.

Image description: Side-by-side photos of Donald Trump (left) and Meryl Streep (right). In comic book speech bubbles, Trump says “I hate disabled people!” and Streep replies “Me too!”

It may seem like I’m over-analyzing a single 1-minute paragraph within a 6-minute speech. That’s because that 1-minute paragraph is all Meryl Streep said about disability. The rest of the speech, well, it was a calculated action from beginning to end: After bullying, she segued into asking her audience to support the Committee To Protect Journalists, and indeed there was a reported spike in donations right after the Golden Globes. That’s great for journalists and probably needed, but was the fact that Kovalevski is a journalist really the centerpiece to this story? Where is the spike in donations to ADAPT, or Not Dead Yet, or the National Council on Independent Living? With regard to disability, all this Golden Globes speech managed to inspire in its viewers was warm fuzzy feelings. It glossed over everything notable that disabled people did in the last year, and instead used one person as a nameless prop to add egos to the list of things being stroked in a rich abled white people’s circle-jerk.

What about the parts of the speech before Kovalevski and Trump?

Before reading any other perspectives, I watched Meryl Streep on YouTube so I could start with my own opinions. She began with what sounded like a speech about diversity. I may not be a comedian, but that should inspire laughter: An abled white woman, delivering a speech, to an audience that is 94% white and 0% visibly disabled, praising that audience for being so diverse. She gave shout-outs to specific actors, and to her credit named their countries of origin including Israel, Kenya, and Ethiopia. But that’s only a third of the names she chose. I’m sorry, but four (4) U.S. states, Italy, and Canada does not qualify as “diversity”. That’s just six (6) white people. To imply that it does reflects denial and rationalization.

Streep made no mention of disability when applauding the diversity of Hollywood. It was as though she did not see the connection within her own speech. No Affordable Care Act. No underemployment of disabled actors. No disability rights advocacy groups. No criticism of ableist movies like Split, The Accountant, and Me Before You, which undermine the work of disability rights groups and fail to employ disabled actors, many of whom are alive thanks to the Affordable Care Act.  If there were any invisibly disabled actors in the audience, I don’t think they were very impressed with the bravery of Meryl Streep to utterly fail at addressing any of the real issues. I, a disabled actor, am not impressed. I, a disabled actor of color, am not impressed.

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