Ugh, speaking as someone with an Asperger’s diagnosis, I HATED Curious Incident of the Dog in the Nighttime. I literally threw the book at the wall in fury halfway through, that’s how much its portrayal offended me. I wouldn’t recommend it to anyone.
Official Twitterbomb at Washington Post
I started tweeting yesterday and I’d like everyone to start tweeting with me at the Washington Post (@WashingtonPost) over their article (tw at link: ableism, violence, seclusion, abuse) “Coping with adult children’s autism, parents may face ‘least bad’ decisions.”
In addition to @WashingtonPost, we will be tweeting at:
Executive Editor Martin Baron: @PostBaron
the Health Section of the Post: @PostHealthSci
the Local section, where the article was published: @postlocal
the journalist who wrote the article’s professional account, Dan Morse: @morsedan
I wrote a post (tw at link, ableism, violence, seclusion, abuse), “Complicit Narratives,” concerning the extremely troublesome aspects of the article, which sympathizes more with abusers than the victims, if you need more information.
We will tweet today and tomorrow using the hashtag #WPComplicit
Here are example tweets I have done so far, without the hashtag:
Tip: add a period “.” before the @ so your followers can see the tweets!
Queerability Statement About Jane Doe in Connecticut
Queerability, a leading LGBTQ and disability rights advocacy organization run by and for LGBTQ people with disabilities, expresses our profound concern about the Jane Doe case in Connecticut. Jane Doe is a transgender teenage girl with a psychiatric disability who has been moved from a psychiatric treatment facility to a juvenile detention center for boys in solitary confinement without trial due to violent behavior. The forced institutionalization of Jane Doe is incongruent with the Olmstead vs. L.C decision.
We urge the Department of Justice to take action and conduct an investigation. We also call on other LGBTQ and disability rights advocacy organizations to speak out on this critical issue.
You are not REQUIRED to be 100% helpful 100% of the time.
It’s perfectly okay to periodically want to complain about something that is frustrating you.
It’s perfectly okay to not be the one who does the solutions- sometimes just talking about it to someone who does is a big help.
it’s perfectly okay to be at the point where you don’t WANT to or are not ready for the problem solving process to begin.
It’s perfectly okay to be in the middle of working on a big issue and to turn to people also dealing with the issue in their lives to talk about the issue itself without having to deal with solutions.
It’s perfectly okay to not be working on the solution 24/7, and to need time to just FEEL about an issue.
Indeed when you are working on a long term issue, issues with no quick or easy answer, issues that are metaphorically entirely uphill battles, issues that might not even be solved in your lifetime sometimes? It is essential to be able to find other people struggling with those issues so you can sit around and talk about it, complain about it, FEEL about it, without it being itself work or a burden.
Sure you might hear something or have an ah ha moment during those sessions, but that is not the value of it- the value is having a vent and having some community, if only temporary or only for that issue, to fall back on with those feelings.
Not every complaint needs to be a work session.
Laws against Romani people in America
For the person yesterday saying they find it hard to believe that there actually are laws against the Romani people in the United States. These are only a few, some of which are still in effect, the one from New Jersey was only repealed in ‘98.
gypsies … for each county … shall be jointly and severally liablewith his or her associates [to a fine of] two thousand dollars (State Code of Mississippi, Section 27-17-191).
The governing body may make, amend, repeal and enforce ordinances to license and regulate … gypsies (New Jersey Statutes, 40:52-1).
After the passage of this act, it shall be unlawful for any … gypsies … to … settle within the limits of any county of this state [without having first obtained a yearly license to do so] (Pennsylvania Statutes, Section 11810).
Any person may demand of any … gypsies that they shall produce or show their license issued within such county, and if they shall refuse to do so … he shall seize all the property in the possession of such [Gypsies] (Pennsylvania Statutes, Section 11803).
Gypsies [in the State of Maryland] must pay jurisdictions a license fee of $1000 before settling or doing business. When any gypsy is arrested, all his property and all the property of members of any group with which he may be traveling, can be confiscated and sold to pay any fine a court may levy against the arrested gypsy. Sheriffs are paid a $10 bounty for any gypsy they arrest who pays the $1000 fee after he is arrested (Logan, 1976).
Whenever … gypsies shall be located within any municipality … the county department of health or joint county department of health shall have power … to order such [Gypsies … ] to leave said municipality within the time specified (Pennsylvania Title 53: Municipal and Quasi-Municipal Corporations, Chapter xvii, Section 3701).
It is illegal in Pennsylvania to be a Gypsy without a license … Any Gypsy who insists on being what he was born - a Gypsy - without a license, is liable to up to $100 fine and 30 days in jail. A constable may confiscate and sell a convicted Gypsy’s possessions to satisfy the sentence … any person may demand to see a Gypsy’s license. If the Gypsy cannot produce a license, the person may turn the Gypsy in to any convenient justice of the peace (Smart, 1969).
Upon each company of … Gypsies, engaged in trading or selling merchandise or livestock of any kind, or clairvoyant, or persons engaged in fortunetelling, phrenology, or palmistry, $250 [is] to be collected … [from those who] live in tents or travel in covered wagons and automobiles, and who may be a resident of some country or who reside without the State, and who are commonly called traveling horse traders and Gypsies (Georgia Acts and Resolutions, 1927, Part I, Title II, Section 56, p.3).
Texas law refers to “Prostitutes, Gypsies and vagabonds” in the same breath, and charges the Romany people $500 to live there (Bernardo, 1981:108).
Be it enacted by the General Assembly of the State of Indiana, that it shall be unlawful for any band of Gypsies … to camp in tent, wagon or otherwise, on any public highway in this state, or lands adjacent thereto … Any person or persons violating the provisions of this Act shall be deemed guilty … and upon conviction shall be fined not exceeding twenty-five dollars or imprisoned in the county jail not exceeding thirty days, or both (State of Indiana Statutory Regulations, Section I). “This statutory law has been used so often against the Gypsies in that state, that Indiana has not been visited by Gypsies for a long time” (Marchbin, 1939:152).
So, there you go.
In case you were wondering: state-supported antiziganism isn’t just limited to Europe.
"When I was admitted to a hospital for surgery, the admitting clerk asked me to sign a Do Not Resuscitate order. I asked what would happen if, having signed it, I stopped breathing because of a bad reaction to anesthesia.
“‘CPR would not take place,’ she replied. I did not sign the order. A few hours after surgery, still delirious from the anesthesia and post-surgical demerol, I had to fight off a social worker who wanted to force feed me a DNR. I mustered my strength and screamed, ‘I’m thirty years old. I don’t want to die!’”"
— Joe Ehman (via madeofpatterns)
From the tags:
"#I have heard nurses joke about effective ways to get people to sign DNRs"
I have read a book by a nurse who talks about ways that nurses manipulate people into signing DNRs, DNIs, and similar orders. For instance, when talking about defibrillator paddles, they’ll exaggeratedly act out what being shocked looks like, to scare the patients’ families into saying they don’t want that. This nurse said that every ICU nurse he knew had a separate way to force or coerce people into signing these orders, and that they look down on people who “want everything done” as just not understanding what “everything” entails.
I’ve gotten that response myself, when I say I want everything done I get instant disdain and get treated like an idiot.
My G-d, this is all kinds of eff-ed up! Nobody ought to be trying to force people to sign DNRs! That’s a *very* personal decision and absolutely no one ought to be bringing it up with *anyone*. If someone wants a DNR, they’ll *ask* for one. That’s what I did. It was *my* choice and no one ever brought it up with me. That’s the way it ought to be. No one ought to ever be pressured into signing away their right to live! Ever!
How to Criticize Israel Without Being Anti-Semitic
If you’ve spent any time discussing or reading about the Israeli-Palestinian conflict, I guarantee you’ve heard some variation of this statement:
OMG, Jews think any criticism of Israel is anti-Semitic!
In the interests of this post, I’m going to assume that the people who express such sentiments are acting in good faith and really don’t mean to cause pain to or problems for Diaspora Jewry. For those good-faith people, I present some guidelines for staying on the good side of that admittedly murky line, along with the reasoning why the actions I list are problematic. (And bad-faith people, you can no longer plead ignorance if you engage in any of these no-nos. Consider yourselves warned.) In no particular order:
- Don’t use the terms “bloodthirsty,” “lust for Palestinian blood,” or similar. Historically, Jews have been massacred in the belief that we use the blood of non-Jews (particularly of children) in our religious rituals. This belief still persists in large portions of the Arab world (largely because white Europeans deliberately spread the belief among Arabs) and even in parts of the Western world. Murderous, inhumane, cruel, vicious—fine. But blood…just don’t go there. Depicting Israel/Israelis/Israeli leaders eating children is also a no-no, for the same reason.
- Don’t use crucifixion imagery. Another huge, driving motivation behind anti-Semitism historically has been the belief that the Jews, rather than the Romans, crucified Jesus. As in #1, this belief still persists. There are plenty of other ways to depict suffering that don’t call back to ancient libels.
- Don’t demand that Jews publicly repudiate the actions of settlers and extremists. People who make this demand are assuming that Jews are terrible people or undeserving of being heard out unless they “prove” themselves acceptable by non-Jews’ standards. (It’s not okay to demand Palestinians publicly repudiate the actions of Hamas in order to be accepted/trusted, either.)
- Don’t say “the Jews” when you mean Israel. I think this should be pretty clear. The people in power in Israel are Jews, but not all Jews are Israelis (let alone Israeli leaders).
- Don’t say “Zionists” when you mean Israel. Zionism is no more a dirty word than feminism. It is simply the belief that the Jews should have a country in part of their ancestral homeland where they can take refuge from the anti-Semitism and persecution they face everywhere else. It does not mean a belief that Jews have a right to grab land from others, a belief that Jews are superior to non-Jews, or any other such tripe, any more than feminism means hating men. Unless you believe that Israel should entirely cease to exist, you are yourself Zionist. Furthermore, using “Zionists” in place of “Israelis” is inaccurate and harmful. The word “Zionists” includes Diasporan Jews as well (most of whom support a two-state solution and pretty much none of whom have any influence on Israel’s policies) and is used to justify anti-Semitic attacks outside Israel (i.e., they brought it on themselves by being Zionists). And many of the Jews IN Israel who are most violent against Palestinians are actually anti-Zionist—they believe that the modern state of Israel is an offense against God because it isn’t governed by halakha (traditional Jewish religious law). Be careful with the labels you use.
- Don’t call Jews you agree with “the good Jews.” Imposing your values on another group is not okay. Tokenizing is not okay. Appointing yourself the judge of what other groups can or should believe is not okay.
- Don’t use your Jewish friends or Jews who agree with you as shields. (AKA, “I can’t be anti-Semitic, I have Jewish friends!” or “Well, Jew X agrees with me, so you’re wrong.”) Again, this behavior is tokenizing and essentially amounts to you as a non-Jew appointing yourself arbiter over what Jews can/should feel or believe. You don’t get to do that.
- Don’t claim that Jews are ethnically European. Jews come in many colors—white is only one. Besides, the fact that many of us have some genetic mixing with the peoples who tried to force us to assimilate (be they German, Indian, Ethiopian, Italian…) doesn’t change the fact that all our common ancestral roots go back to Israel.
- Don’t claim that Jews “aren’t the TRUE/REAL Jews.” Enough said.
- Don’t claim that Jews have no real historical connection to Israel/the Temple Mount. Archaeology and the historical record both establish that this is false.
- Don’t accuse Diasporan Jews of dual loyalties or treason. This is another charge that historically has been used to justify persecution and murder of Jews. Having a connection to our ancestral homeland is natural. Having a connection to our co-religionists who live there is natural. It is no more treasonous for a Jew to consider the well-being of Israel when casting a vote than for a Muslim to consider the well-being of Islamic countries when voting. (Tangent: fuck drone strikes. End tangent.)
- Don’t claim that the Jews control the media/banks/country that isn’t Israel. Yet another historical anti-Semitic claim is that Jews as a group intend to control the world and try to achieve this aim through shadowy, sinister channels. There are many prominent Jews in the media and in the banking industry, yes, but they aren’t engaged in any kind of organized conspiracy to take over those industries, they simply work in those industries. The phrase “the Jews control” should never be heard in a debate/discussion of Israel.
- Don’t depict the Magen David (Star of David) as an equivalent to the Nazi swastika. The Magen David represents all Jews—not just Israelis, not just people who are violent against Palestinians, ALL JEWS. When you do this, you are painting all Jews as violent, genocidal racists. DON’T.
- Don’t use the Holocaust/Nazism/Hitler as a rhetorical prop. The Jews who were murdered didn’t set foot in what was then Palestine, let alone take part in Israeli politics or policies. It is wrong and appropriative to try to use their deaths to score political points. Genocide, racism, occupation, murder, extermination—go ahead and use those terms, but leave the Holocaust out of it.
- In visual depictions (i.e., political cartoons and such), don’t depict Israel/Israelis as Jewish stereotypes. Don’t show them in Chassidic, black-hat garb. Don’t show them with exaggerated noses or frizzled red hair or payus (earlocks). Don’t show them with horns or depict them as the Devil. Don’t show them cackling over/hoarding money. Don’t show them drinking blood or eating children (see #1). Don’t show them raping non-Jewish women. The Nazis didn’t invent the tropes they used in their propaganda—all of these have been anti-Semitic tropes going back centuries. (The red hair trope, for instance, goes back to early depictions of Judas Iscariot as a redhead, and the horns trope stems from the belief that Jews are the Devil’s children, sent to destroy the world as best we can for our “father.”)
- Don’t use the phrase “the chosen people” to deride or as proof of Jewish racism. When Jews say we are the chosen people, we don’t mean that we are biologically superior to others or that God loves us more than other groups. Judaism in fact teaches that everyone is capable of being a righteous, Godly person, that Jews have obligations to be ethical and decent to “the stranger in our midst,” and that non-Jews don’t get sent to some kind of damnation for believing in another faith. When we say we’re the chosen people, we mean that, according to our faith, God gave us extra responsibilities and codes of behavior that other groups aren’t burdened with, in the form of the Torah. That’s all it means.
- Don’t claim that anti-Semitism is eradicated or negligible. It isn’t. In fact, according to international watchdog groups, it’s sharply on the rise. (Which sadly isn’t surprising—anti-Semitism historically surges during economic downturns, thanks to the belief that Jews control the banks.) This sort of statement is extremely dismissive and accuses us of lying about our own experiences.
- Don’t say that since Palestinians are Semites, Jews/Israelis are anti-Semitic, too. You do not get to redefine the oppressions of others, nor do you get to police how they refer to that oppression. This also often ties into #8. Don’t do it. Anti-Semitism has exclusively meant anti-Jewish bigotry for a good century plus now. Coin your own word for anti-Palestinian oppression, or just call it what it is: racism mixed with Islamophobia.
- Don’t blow off Jews telling you that what you’re saying is anti-Semitic with some variant of the statement at the top of this post. Not all anti-Israel speech is anti-Semitic (a lot of it is valid, much-deserved criticism), but some certainly is. Actually give the accusation your consideration and hear the accuser out. If they fail to convince you, that’s fine. But at least hear them out (without talking over them) before you decide that.
I’m sure this isn’t a comprehensive list, but it covers all the hard-and-fast rules I can think of. (I welcome input for improving it.)
But wait! Why should I care about any of this? I’m standing up for people who are suffering!
You should care because nonsense like the above makes Jews sympathetic to the Palestinian plight wary and afraid of joining your cause. You should care because, unfortunately, the Israeli-Palestinian conflict has correlated to an uptick in anti-Semitic attacks around the world, attacks on Jews who have no say in Israeli politics, and this kind of behavior merely aggravates that, whether you intend it to or not.
The Israeli-Palestinian conflict is a real minefield in that it’s a clash between oppressed people of color and an ethnoreligious group that is dominant in Israel but marginalized and brutalized elsewhere (often nowadays on the exact grounds that they share ethnoreligious ties with the people of Israel), so it’s damned hard to toe the line of being socially aware and sensitive to both groups. I get that. But I think it is possible to toe that line, and I hope this post helps with that. (And if a Palestinian makes a similar list of problematic arguments they hear targeted at them, I’d be happy to reblog it, too.)
So, TL;DR version:
- Do go ahead and criticize Israel.
- Don’t use anti-Semitic stereotypes or tropes.
- Don’t use overly expansive language that covers Jews as a whole and not just Israel.
- Don’t use lies to boost your claims.
- Do engage Jews in conversation on the issues of Israel and of anti-Semitism, rather than simply shutting them down for disagreeing.
- Do try to be sensitive to the fact that, fair or not, many people take verbal or violent revenge for the actions of Israelis on Diasporan Jews, and Diasporan Jews are understandably frightened and upset by this.
May there be peace in our days.
Don’t teach kids that their body is wrong
Something that can happen in therapy for disabled kids is:
People hold out hope that the kid won’t be disabled anymore, when they grow up.
So they push the kid as hard as possible in childhood, and tell them (often without saying this explicitly) that if they just work hard, their body won’t be wrong anymore.
This doesn’t work.
People who are disabled as children are usually still disabled as adults. Even if the therapy helped them. Even if they gained new physical abilities. Even if they learned things from it they wouldn’t have learned without it.
Even if they learn to walk. Even if they learn to talk. No matter what other skills they acquire. Their body is probably going to stay very different from most other people’s bodies, and far from the cultural norm.
And… part of living well as a person with a disability is accepting the body and the brain that you have, and working with it rather than against it.
Because you can’t live in an imaginary body; you can’t live in an abstraction. You have to live your own life, as you actually are. And sometimes that involves medical treatment, sometimes it involves equipment, sometimes it involves therapy - but always, it involves reality. You can’t willpower yourself into being someone else.
Disabled kids tend to get taught the opposite message, because childhood therapy is usually cure-oriented even for conditions that aren’t anywhere close to curable. It’s about normalization, much more than functioning well.
Then they go through all manner of hell unlearning this once they’re old enough that everyone gives up on pretending that a cure is going to happen.
If you’re responsible to or for kids with disabilities, do what you can to protect them from this. Make sure they aren’t being pushed to hang their self-worth on accomplishing things that are physically impossible or implausible. Help them to understand hat their bodies aren’t wrong. Teach them that they already have lives worth living.
It takes a lot of practice to gain that sort of gut-level knowledge that we’re strong enough to handle this stuff and that the world doesn’t end if someone else is angry at us. It’s not an innate quality that some people have and some don’t; people who grow up in non-abusive homes learn it when they’re young, is all, and the rest of us have to learn it when we’re grown up. And it sucks, and it’s not fair, and it’s not fun, but there’s no getting around it, and you can do it, you CAN.
You can piss people off.
You can be wrong.
You can fuck up.
You can do stuff that everyone thinks is weird.
AND IT IS ALL OKAY. The world won’t end. You will still be a good person. And the likelihood is that most of the things you do WON’T be wrong, and WON’T piss people off, and WON’T be up-fuckery, and WON’T be weird, but if it is? The hell with it; fix it, if necessary, and move on."
Wow… Ok, this hit us hard. It is exceedingly rare that we burst out crying after reading something on the internet. o_O On some level we know this, what it says in this post, but we are not there yet. Still trying to learn it and get it to sink in, still really not there yet.
Me too. I’ve learned how to piss people off, but it’s still overwhelmingly awful, and it’s still hard for me to stand my ground once I feel like I’ve hurt someone, even if I know they’re just using their anger as a weapon and that I haven’t really hurt them so much as — like Captain Awkward said — I’ve just pissed them off.
5 Tips to Make Your Pride Event More Inclusive
Happy Pride, everyone!
We compiled this list of tips to help Pride event organizers make their Pride events more inclusive for attendees with disabilities.
1. Ensure physical and cognitive accessibility from the start. Let’s go beyond just wheelchair ramps, raised viewing areas, and ASL interpreters. Have designated areas as far away from noise as possible for people with sensory processing disabilities who might get overloaded from all the hustle and bustle at Pride events. Have designated smoking areas and encourage attendees to refrain from smoking outside those areas. Supply communication badges and strongly encourage people to use them and respect the communication preferences of all attendees.
2. Create “drop out/in” points on parade/march routes. Many people with disabilities want to be a part of Pride parades and marches, but they are unable to walk the whole route. Instead of barricading the whole route, create “drop out/in” points for people to enter and exit the parade when they are unable to continue.
3. Have the parade/march displayed and live-captioned on closed-circuit TVs. This feature can be expensive for smaller Pride events, but this can help people with auditory processing disabilities understand what the announcer is saying.
4. Use clear signage and have volunteers ready to direct people where they need to go. Some people with intellectual and developmental disabilities have trouble navigating festivals so it would be helpful to have things clearly labeled and marked.
5. Have people with disabilities in leadership roles when planning Pride events. Whenever possible, seek the input of people with a diverse array of disabilities when planning Pride events. Nothing About Us Without Us.
silk is ealy :)
This is true, mostly. How do I know silk is ealy? Well, “ealy” is a word I invented to describe the texture of the smoothest, softest silk. There are some silks that aren’t ealy, but there are very few ealy things that aren’t silk, though I have felt some young leaves of an alchemilla mollis plant that I would describe as ealy, and I have a piece of rayon fabric that is so soft that I first mistook it for silk, till I felt the familiar rayon “bounciness” when I tugged gently on it a few times.
I love to snuggle up on the couch with a book, wrapped in my silk quilt, Violet. Yes, I named my silk quilt. She’s more of a duvet, than a quilt, but I like to describe her as my “silkquilt”, so that the ‘k’ and the ‘q’ run into each other. Right now, she’s on the couch next to me, and I have a corner of her under my wrists, as I type this blog entry. She’s so soft! :)
Anonymous said to realsocialskills:realsocialskills said:I owe y’all an apology. I did not notice that book recommendation in the post.I wouldn’t recommend it either. I’m so repelled by that book that I haven’t been able to read it. Even the title itself bothers me.If I had noticed that, I either would not have reblogged the post, or I would have said something.Thank you to everyone who pointed it out.
There was one scene in that book that I absolutely loved. And there was one thing about the book that I absolutely loved. But other than that, I really hated the book.
The scene I really liked involved a detailed description of overload and shutdown while trying to travel. It wasn’t perfect, but it was better than any description I had read at the time (and this was years ago).
The one other thing I loved was that his ability to work out how to travel… it showed how someone with very limited abilities in some areas could still work out more about how to do things, than anyone was giving him credit for due to his limited abilities in many areas.
One thing I disliked in the autistic community’s response to the book at the time it came out, was a lot of people said he was too unrealistically low-functioning or something. They kept saying that no intelligent child could have that many problems in that many areas. Except that he could do a lot of things that I have trouble doing, so I felt like these people were somehow dismissing my existence out of hand as well.
But there are a lot of really good reasons for hating the book.
I don’t like it for a lot of reasons.
One, they make him into a robot. Seriously. He makes no decisions of his own because all of his decisions are governed by a system of logic created by the author. He does nothing for himself, he only does things because an autistic person would do this or that in this or that situation, supposedly. He is not a person, he is a walking bag of autistic traits. He narrates the story but he is presented as someone who could never truly understand himself. And he is not in control of his actions, because they all governed by “logic” or whatever the fuck they call his programming. Because he’s like a programmed computer that only does what it’s programmed to do in response to various situations.
He’s written as totally alien to anything a reader could identify with. On purpose. Because that’s how people see autistic people. I do identify with him on some levels, but in spite of that characterization, certainly not because of it. I really didn’t like his inability to feel certain emotions and attachments, and the fact that the author seriously believed that this was a realistic way to write an autistic kid, and represent autism to everyone.
When it came out, I actually did like it, but like someone else, I was heavily influenced by a mutual online friend who was always gushing about how accurate it was, and … autistic groupthink exists. And there was a thing back then about who liked it and who didn’t and why, and who identified with it and who didn’t and why, and it was complicated. Sometimes I felt like by liking it I was saying “Yes, ‘intelligent’ autistic kids can have problems that severe in other areas.” Because a lot of autistic people were saying that was impossible.
I don’t like it now, for all kinds of reasons, some of which I’m talking about.
But the other thing is, and this is a subtler thing, something nobody was talking about really…
The character is impossible.
He is not impossible, as some people say, because he “mixed high functioning and low functioning traits”. Mixing “HFA” and “LFA” traits is downright normal among real-life autistic people. Happens constantly. I’m a living example of a rather extreme version of such.
He is impossible because the author does not understand autistic traits. He does not understand how one autistic trait fits together with another, how they play off each other. He does not understand which combinations are likely, which combinations are highly unrealistic, and which combinations are downright impossible. He does not understand how when you have a certain trait, you have to have other related traits. Or how there are some traits that never, ever go together in certain combinations.
And the author just throws in every autistic trait he can think of, regardless of how they fit together, many of which are not even autistic traits, but rather things you think are autistic traits if you read too much Francesca Happe or Uta Frith or Simon Baron-Cohen but don’t really know autistic people well. And that makes the character completely unrealistic, but not for the reasons most people imagine when they think so.
Google Cloud and Autism Speaks
Most of you know that Google Cloud is working with Autism Speaks to gather and track autistic DNA. If you want to learn why this is bad through facts, click here. For stories, click here. People with a bad track record are being creepy for a more homogenous humanity. If you have something to say about that, look at this:
[The image reads #GCPOffice Hours/ Join us for Office Hours with the team from Google Cloud Platform. On June 12 at 11 am PT, we will be answering questions on Twitter. Ask us anything using #GCPOfficeHours and we will respond then].
Why I think differences of opinion are so important in marginalized communities.
I know I’ve talked about — a lot — why I think it’s important to respect dissent among marginalized and oppressed people. And why it’s important to respect differences of opinion.
The assumption that you get taught around here, usually, is that if someone disagrees with the dominant view of whatever the oppressed community is, then they’re wrong. And to bring up the fact that there are marginalized people who disagree with the dominant view is ‘a derail’ at best. Certainly extremely annoying to people who do agree with the dominant view.
And why are such dissenters wrong? Usually, the story goes, it’s because we haven’t learned enough about our own oppression yet, so we’re just going with what our society has told us is true. Or we’re brainwashed. Or we’re stupid. Or incapable of understanding. Or all four. (They don’t usually say ‘stupid’, but they mean it, and that’s all that matters.)
And the thing is, those things can absolutely be true. Any of those may be the reason that someone will have a differing opinion. But there are also plenty of other reasons a person could have a differing opinion from the majority.
Also, people don’t always notice this, but it’s important: Sometimes an oppressed person will seem to hold the same opinion as an oppressor holds. They will say roughly the same words. But the actual reasons for their opinions will be as different as night and day.
Take person-first language, for instance.
Nondisabled people often prefer person-first language, and push it on disabled people even when we don’t want it, because they think that the only way to recognize us as people is to distance our personhood from our disabilities, in their heads. That makes them feel better about us.
When disabled people prefer person-first language, it’s often because disability-first language has been used against them to rob them of their personhood in a very specific and horrific manner. Where the only times they’ve been called “an autistic” for instance, is in a clinical sense where nothing about them matters they’re just a walking talking pile of impairments. And that walking talking pile of impairments, with no thoughts of their own, is all they’ve been, their entire lives, and that’s always been attached to being called “an autistic”. And they say “No, I’m a person, with autism,” in order to emphasize that they are more than just the impairments that come with autism.
This doesn’t mean that every autistic person should call themselves a person with autism. But it does mean that when a person with autism says they want to be called a person with autism, then it’s important to listen to them, because their reasons for wanting it are likely extremely different from the reasons a nondisabled person would have for using the exact same terminology.
So even when an oppressor and an oppressed person seem to hold the same opinion, their reasons can differ a lot. So when you hear an oppressed person say something that sounds just like what an oppressor would say? Don’t assume they’re just parroting what an oppressor taught them. Find out their reasons. Have some respect. Even if it sounds similar on the surface (especially if they themselves have communication problems), they may have extremely important reasons for their opinions that you’re missing because you’ve assumed that they’re brainwashed or something.
The reason that I think differing opinions are so important?
Nobody is always right. That goes for individuals. That also goes for communities.
That means that the only possible way to really figure out what is right, is to know as many of the possibilities for what might be right, as you can. Which means you have to entertain the possibility that dissent from the majority opinion is the right one. Because sometimes, it’s going to be.
Additionally, opinions are not all or nothing. It’s not like there’s the majority opinion in anti-oppression communities, and then there’s the opinion of the oppressors, and that’s all there is. People will make it sound like there’s the social justice opinion, and all other opinions are “anti-SJ” and therefore bad. (And anti-SJ folks will say the same, but in reverse.) But that’s not really how it works.
Like my opinions are often considered dissenting opinions. And yet many of my opinions are barely different from the dominant opinions at all. Or some of my opinions include the dominant opinion as one possibility in one situation, but have other opinions for other slightly different situations. This is because I think the situation determines what’s right more than a rigid ethical code determines what’s right. The opinions I tend to dissent from, tend to be built around rigid ethical codes rather than things that depend on the situation. So we might agree in some areas but differ in others, just based on how we come to ethical decisions in the first place.
But anyway, my point is, that differences of opinion are really important. They can be annoying, especially when you’re certain you’ve got something right and that dealing with differences of opinion will just get in your way. And it’s totally valid to form communities where you agree on a basic opinion and then work out how to carry out that opinion, without entertaining dissent within that closed community. But at the same time, that’s… not what these communities are doing, they want dissent not to happen even outside of their bounds, and they want to suppress dissent, and that scares me a good deal.
Because sometimes these communities are right.
But sometimes they’re wrong. Sometimes they’re horribly wrong.
And even when they’re right, their rigidity about rightness often means the right ideas are applied in the wrong ways.
And usually, what’s right is going to depend on the situation. And the world has infinitely many situations. So that means that there are going to be many, many different right answers, depending on what the situation is.
But even when opinions are wrong, it’s important to listen to them. Because you can learn from being wrong. And because you don’t always know whether something is wrong before you really think about it. You need to hear twenty different opinions because then you have a better idea of what the possibilities are. And possibilities matter.
Plus, I don’t think the most important thing is to come to the right answer. And that’s again where I disagree with the way many anti-oppression communities do things. What they want is to come up with the right ideas, the right answer, and then get everyone thinking the right ideas, having the right motivations, saying the right things, and then ending oppression will spring from there.
I think that ending oppression is a long-term process, and it doesn’t depend so much on finding The Right Answer, as it does in learning to evaluate situations, each situation different from the next, and figuring out what to do in those situations. And figuring out what to do in each situation means, among other things, learning to evaluate lots of opinions. And what you do to solve a situation is more important than what you think or what you say.
So dealing with dissenting opinions is important for a lot of reasons. But the main ones are that people can’t be right all the time, communities can’t be right all the time, so you have to have all the opinions out there so you can evaluate each one. And that given that the right thing to do varies by situation, understanding a lot of opinions can be valuable for knowing which ones to act on in different situations. Both of those are extremely valuable reasons to not instantly squash dissent just because it’s annoying and makes life difficult.
Sometimes an ‘unpopular opinion’ is just another word for someone with a very popular, oppressive opinion, wanting to be an oppressive jerk. But sometimes it’s an opinion that’s unpopular in particular communities (regardless of popularity elsewhere) but well worth listening to and figuring out.
So I will continue to leave my little packages (see this post on echo chambers for a full explanation) out there, and I hope other people will as well. Because diversity of opinion is one of the most important things we have going for us, for so many important reasons.
Mental torture, fear, control, slavery
Trigger Warning: torture of a disabled person; psychological abuse; slavery; implied sheltered workshop
There was one day where I was on “Loss Of Privilege” which happens if you break your “contract” by having any of numerous behaviors. You are basically shunned at that point and not allowed to interact or speak with anybody, get up from your seat, must go to bed at 7pm along with whatever else it says in your program. I would get very depressed and anxious when I was on “LOP”. I was trying to calm myself down by rocking. Rocking was a “behavior” for me, but since I had already lost everything and it made me feel better, I did it anyway. I wasn’t doing anything else but that. I was rocking and trying to get my head in a better place, and the staff was getting angry because I wasn’t doing my work. My “work” was the demeaning task of putting 12 popsicle sticks in an elastic band, over and over. We got paid slave wages of a penny a bundle. And even that money I never received. And this was benefitting a local company that made candy apple kits. The staff kept pinpointing me for “stopping work”, and I just kept rocking and trying to calm down. But the more they were in my face yelling the more agitated I got. If they had just left me alone I would have been able to start working on my own, but instead they worked me up into a frenzy of anxiety and confusion. Then the supervisor of the room decided she was going to give me directions to work, so that if I didn’t, she could shock me. This was actually against the rules, as staff weren’t allowed to direct us to work but she did it anyways. She started giving me rapid fire directions to bundle the sticks. In a panic I started grabbing sticks and putting and elastic around it, trying to keep up with her auctioneer style directions. Before I could finish one she was directing me again. I was so afraid of getting shocked. When she saw I wasn’t counting them, she started directing me to “bundle 12 sticks”. So I was trying to count them out, but she was directing me so fast I couldn’t keep up. She grabbed one of the bundles and counted it. It had 13 sticks. She grabbed my device and shocked me for making that mistake after terrorizing and confusing me to do a task faster than I could. It was all too much. I took the box of sticks and threw it across the room, of course getting shocked again. She got what she wanted. Even though she should have gotten in trouble for what she did, and it was on camera, she didn’t. Of course I got in lots of trouble, along with being tortured and anxious and frustrated. Knowing that they will always find a way to hurt me, and that my body was not mine, that I was a slave to them. And JRC says they are treating the most “dangerous” behaviors. No, they are all about control. Control and fear and they WILL get their way. They are evil monsters that haunt my dreams. And I will not let it stay their secret.
Five Reasons Why Writing a Case Study about my Phantom Sightedness Could Make your Career
TO the budding neuroscientists of Tumblr,
For the past seven years or so, I’ve been madly wishing that one of you would write a case study about me, complete with FMRI data.
Here’s why: I’ve been virtually totally blind since birth, with limited light perception, due to a retinal condition. I have some functioning rods and cones, but most of the time, I am completely unable to make sense of what I see. My eyes are constantly barraging my brain with useless visual information, and, instead of ignoring it, which probably would be the smart thing to do, my visual cortex decided that it is going to work as hard as it can to interpret what I’m seeing. In essence, my brain is still waiting for sensory information that it is not receiving, and I suspect that these unmet expectations are responsible for what I term my phantom sightedness: my belief that I am a sighted mind in a blind body.
All of the congenitally blind people I’ve spoken to view their blindness as a stable (albeit sometimes inconvenient) aspect of their identity. I’m a social worker and an English teacher, not a neuroscientist, but I’ve read enough journal articles to hypothesize that something neurologically interesting must be afoot.
This is where you come in. Here are five reasons writing a case study about me would benefit you and your career.
1. Neuroplasticity is Awesome.
In most cases, the brains of congenitally blind people rewire themselves so that the visual cortex can be co-opted for more meaningful tasks, such as Braille-reading and creating mental maps using sounds and echoes. I’m sure this has happened to me to some extent; I can read Braille, and I can understand synthesized speech at ridiculous speeds. But my neuroplasticity works in the other direction as well. When I do see more than just a blur of light (usually when I’m looking at a bright object when it’s dark outside, or when I’m in a moving car) my brain helpfully converts my visual perceptions into tactile information. Each color, for example, has its own texture. This is not surprising, considering that David Eagleman found an overlap between brain regions responsible for color and texture processing. Finally, my descriptions of my visual perceptions are largely metaphorical, which leads me to believe that I am also recruiting brain regions responsible for metaphor comprehension in order to make sense of what I am seeing.
2. I will blow your mind.
Last summer, completely by accident, I discovered that I can touch photos (without looking at them) and identify transitions between contrasting colors, as well as the focal point of the image. This is a phenomenon known as dermo-optical perception. Few people are researching DOP these days, because some of its supposed practitioners were merely “peeking down their noses,” but I can tell you that I can feel colors blindfolded.
3. I will amuse you endlessly.
A few days ago, I was having one of those moments where I could make out a shape. My mom held up something, which I thought was a drinking glass but was actually an Asian pear. My family friend, a psychologist, handed me the pear and pointed out that these two objects had the same rounded shape. I then proceeded to wave the pear around like a crazy person and rhapsodize for five minutes about how strange it was that two things with such different textures could possibly be mistaken for one another.
4. Let’s shift some paradigms!
In his essay, “To See and Not to See,” Oliver Sacks presents the case of Virgil, a middle-aged man, blind since childhood, whose sight was restored later in life. The picture Sacks paints of Virgil’s recovery is rather bleak. He had adapted to life as a blind person, and he found sight to be more intrusive than beneficial. Virgil’s story and others like it send the message that people who have been blind since birth or early childhood are largely uninterested in the visual world. I think this assumption is both detrimental and untrue. Through my close relationship with friends, as well as my artist mother, I have gained an appreciation and an understanding for visual beauty, even though I have never seen. If you describe a painting to me, I will gladly give you my opinion about its form and composition, and nine out of ten times, others will agree with me. I can’t recognize colors with my eyes, but from my tiny bit of light perception, my extensive reading, and my DOP, I’ve cobbled together a color wheel, complete with fine-grained distinctions between colors. I’m sure it doesn’t look like yours, but what matters is that even when it is given a minimal amount of information, only a tiny proportion of which is visual, my brain is still able to simulate an approximation of color.
5. We could help teach other blind people about vision.
As medical advances continue, and more and more blind people are able to transition into sight if they choose, it becomes imperative that those who are interested have access to tools that enrich their understanding of the visual world. In addition, exposing young blind children to visual concepts might preserve synaptic pathways that might otherwise have been pruned. If my hypothesis is true, that even people with severe blindness can create visual constructs if their brains are fed the right sort of information, then the possibilities are endless. For example, we could create a video game that uses haptic feedback to teach color recognition. We could use a bendable and foldable material, like wire, to show how a three-dimensional object can be “flattened” to form a two-dimensional image. Even for blind people who have no desire to see, learning these concepts could still increase their ability to connect with the sighted, and might invite them to explore new realms of creative expression that they had never before considered.
The upshot: I think my brain has a fascinating story to tell, about identity, about neuroplasticity, about what it means to be blind and sighted, and I need one of you to help me bring that story into the world.