This is not my main blog, but only one of three blogs. The other two are my ancient HPoA blog on Wordpress (, and my main blog on Dreamwidth, which I've only ever made one post to and is still under construction.

Tune in later for more info. :)

Friday, August 22, 2014
Okay, this actually creeps me out more than a little...









A Dutch dementia facility where carers act as shopkeepers to keep an eye on residents attracts global interest.

I don’t normally do trigger warnings but I will say that some of this article literally made me nauseous. Proceed with caution if “real life dystopia” stuff freaks you out. :/

I know dementia isn’t the same thing as autism, but I am 100% sure that this is exactly what a lot of people have in mind when they imagine an “ideal care facility” for people with any sort of cognitive and/or developmental disability.

And that’s not even getting into the whole mess surrounding how people with dementia are viewed and what assumptions are made about them. I know it can be really really difficult and scary for both the person who has it and their family members, etc., but that doesn’t make it remotely okay to treat someone like their personhood is gone because they have dementia.

Nor does it make it okay to lie to them and essentially “trick” them. I don’t necessarily claim to have a solution for safety-related stuff but I am sure there has to be something better than deception. Especially given that the one constant I have seen in interacting with people in varying stages of dementia is a terrible fear that someone is trying to put something over on them, or isn’t telling them something.

But anyway, the part that freaked me out the most was this:

‘Dementia Village’ - as it has become known — is a place where residents can live a seemingly normal life, but in reality are being watched all the time. Caretakers staff the restaurant, grocery store, hair salon and theater — although the residents don’t always realize they are carers — and are also watching in the residents’ living quarters. 

Residents are allowed to roam freely around the courtyard-like grounds with its landscaped trees, fountains and benches — but they can’t leave the premises.

Their two-story dormitory-style homes form a perimeter wall for the village, meaning there is no way a resident can accidentally wander out. And if they do approach the one exit door, a staffer will politely suggest the door is locked and propose another route.

Seriously, humans?! Again, I do NOT claim to have all the answers to how to actually address certain kinds of difficulties people might have. But this does not strike me as a step in the right direction as long as it relies on deception. It literally reads like some sort of sci-fi dystopia. 

I said this on FWD agrees ago about a much less expansive idea if something very similar. A fake bus stop. I described my own experiences in the process.

I got jumped on hard by tons of people. Who said I just didn’t understand dementia. I think I understand it better than they did. But then they were the same people I described in a recent post, who pretty much believed that it was ableist to question psychiatry.

Anyway I was eventually, IIRC, just told to calm down and stop being furious about not only the fake bus stop but their reaction to it. I have no words. This literally is my nightmare. I’ve had nightmares about this place. Almost exactly.

And everyone thinks their fucking dystopia is really a utopia.

One exit door? And if there’s a fire?

Places like that don’t tend to care about fires. One mental institution I was in, had the children’s building with a shape like a V with the nurses station at the center, a day room on each side of the nurses station, and a locked door at the center, with a hall going off in each direction. The exits, each one a set of two locked doors in front of each other with a couple rooms in between, were at the end points of those halls. As far from the day rooms as possible.

In a fire, what was the evacuation plan? All inmates go to the DAYROOM and wait to be evacuated. You couldn’t get further from the exits in places patients were permitted to go. And none of us were clueless what that many about our value.

That’s cruel and unacceptable. I would have thought that would be illegal.

I’m not sure that I necessarily like the idea, but in their defense, wouldn’t it be nice to have your loved ones with dementia somewhere where they aren’t being overtly treated like they’re crazy? I don’t see how this is any worse than a traditional nursing home, and perhaps better since movement is much less restricted.

See, you’re not realizing that they’re still people. That this is a thing that happens to people with dementia, not a thing that happens to their relatives.

The people who have a problem with this, are identifying with the people it’s being done to.


This isn’t about what disabled people’s relatives experience. It’s about what disabled people experience.

And narrowing “disabled people” down to people with one specific diagnosis just hides the fact things like this are done to disabled people, especially cognitively disabled people (and especially people prone to being considered not really to be experiencing any of this), PEOPLE LIKE ME, as a whole.

And WTF do you mean not treated like crazy people? This is EXACTLY how crazy people, and cognitively disabled people, are treated.

We are assumed not to understand enough of the world for our experiences to be worth considering.

We are lied to constantly in the name of treatment. Because manipulating us to behave a certain way, is considered more important than telling us the truth.

We aren’t owed the same respect given to nondisabled people.

We are assumed to act in certain ways for reasons that are totally irrational and outside the sphere of normal human experience. For instance, if we walk putt if or home or institution, it’s always assumed to result from disorientation rather than a desire to leave for any of a number of normal reasons.

When questions arise about the ethics of what passes for treatment, everyone is more concerned about our loved ones than ourselves.

It’s assumed that there is no possible way for us to live in the regular world, rather than in special institutions designed for us. Note the only two alternatives assumed — horrible nursing home institution, or pseudo-wonderful fake town institution. Never our own homes with help and support, even though it’s fully possible. (That’s where I live, even though I qualify both for nursing home admission and for ICF/MR admission.)

In fact our families always matter more than us. And so do their wishes for us. Always. We can’t have any say in anything.

And for reference I’m a cognitively disabled former mental patient with several different developmental disability labels given to me over time (autism, developmental disorder NOS, epilepsy), and experience with everything from mild to severe delirium, as well as seizures that impair consciousness without removing my ability to walk around.

So I’m no stranger to how crazy and DD people are treated, and people with dementia are generally treated like a combination of the two. I’m also no stranger to conditions that create severe disorientation, ranging from being conscious but confused (with possible hallucinations or delusions) to unconscious but still responding to things and walking around.

Plus, due to my particular set of cognitive skills and difficulties, I tend to be better able to pick up on what people around me with dementia are and aren’t aware of, than nondisabled people are, even sometimes people who know them well.

So while I don’t have dementia, I have a pretty good awareness of what it is to be treated similarly to how they are, and I have a lot of experience with a wide variety of levels of cognitive difficulty,  confusion, and disorientation.  Including literally blacking out and waking up to find I’ve been trying to pull out a catheter, dial the telephone, walk around, or cling tightly to bedrails while hospital personnel try their best to pry me off.

So while I can’t speak to the literal medical experience of having my brain permanently deteriorate around me. I can speak to the experience of being treated “like a crazy person”, judged to have the cognitive function of an infant, and treated in a wide variety of ways while in a wide variety of levels of confusion and disorientation.  So I have both the medical and social experiences of cognitive disability, and I don’t think there’s something special about people with dementia that makes their need for human dignity any different than any other kind of person.

In fact, there’s no special kind of disabled person that renders treating people in a respectful and dignified manner, useless or counterproductive. But any time anyone wants to treat anyone that way. They will sure do their best to make sure to not only narrow it down to a single diagnosis. But also make it so that magically anyone with that diagnosis who disagrees with how they are being treated, is either too incapable to understand it’s for their own good, or too mild to understand it’s for the good of people with more severe problems. (The too incapable or too mild thing will be waived for anyone who agrees to be treated with disrespect.)

I know how these things work.

And yes I identify with the people it’s been done to because I’m also disabled, because I’ve been treated this way, because I know how wrong it is. I will never understand though why people’s immediate sympathy in these situations goes to everyone BUT the disabled people. Or the thing where if you don’t have the exact same degree of the exact same condition of the exact same type, you aren’t supposed to identify, because dontcha know (insert disability here) is so unique nobody can relate to it without having it and nobody who has it can talk or think about it! Or whatever.

7:18 pm →
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felis corvus

Thursday, August 14, 2014
Thursday, August 7, 2014


"no one can love you until you love yourself"

that is complete bullshit

don’t let anyone tell you that you don’t deserve love from other people because you struggle with loving yourself


(Source: neoliberalismkills)

Tuesday, July 29, 2014

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!

Thursday, July 24, 2014

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.

2:00 pm →
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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. 

1:00 pm →
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Friday, July 18, 2014

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.

3:17 pm →
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"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.

(via youneedacat)

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!

Thursday, July 17, 2014

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:

  1. 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.
  2. 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.
  3. 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.)
  4. 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).
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Don’t claim that Jews “aren’t the TRUE/REAL Jews.”  Enough said.
  10. 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.
  11. 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.)
  12. 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.
  13. 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.
  14. 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.
  15. 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.”)
  16. 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.
  17. 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.
  18. 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.
  19. 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:

  1. Do go ahead and criticize Israel.
  2. Don’t use anti-Semitic stereotypes or tropes.
  3. Don’t use overly expansive language that covers Jews as a whole and not just Israel.
  4. Don’t use lies to boost your claims.
  5. Do engage Jews in conversation on the issues of Israel and of anti-Semitism, rather than simply shutting them down for disagreeing.
  6. 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.

Thursday, July 10, 2014

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.

"Developing the ability to piss other people off (or even to RISK pissing them off) without knuckling under is pretty much the Holy Grail of emotionally abused kids, I think. We are programmed to respond at the first sign of displeasure, and we don’t have the faith in ourselves and our decisions to weather the storm– or even a mild sprinkle– so we tend to freak out as if the world was ending if a cloud crosses the sun. We freak out about the possibility that we’re wrong, that we’re doing the wrong things, that we’re making the wrong choices, that we’ll make someone angry, because there’s this awful certainty lurking at the back of our minds that says “If you do the wrong thing, you will be in TROUBLE.” And being in TROUBLE is the worst thing, ever, because that part of our brain is forever three years old where our parents are our whole world and being in TROUBLE is the end of everything.

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."

PomperaFirpa @Captain Awkward (via awakeforyears)

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.

(via spacerobotcrew)

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.

(Source: ladysaviours)

Sunday, June 29, 2014

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.

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Saturday, June 28, 2014

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!  :)

Thursday, June 26, 2014



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.
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.

Well said!!!

(Source: realsocialskills)

Wednesday, June 11, 2014

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].

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