Religion and Morality

I remember reading a story by a Christian woman who had an ADHD son. At one point, she said that she'd read that ADHD kids were more often abused, and she could believe it, because if it weren't for her religion, she'd have abused her son.
As an atheist, I was deeply offended. If that's really true of her, I'm glad for her son's sake that she's a Christian. But I don't need to be afraid that some diety will punish me in the afterlife to avoid hurting a child. All I need is an awareness of how my actions will affect that child. The thought of breaking that child's trust, betraying that child and the pain it would cause, is enough to make me think I shouldn't abuse that child.
There's this stereotype among many Christians (and probably people of other religions) that you must be religious (preferably the same religion as them) to be a caring person. I could point at the religious people who do terrible things - the sexually abusive priests, the people who ran the Inquisition, etc - but many people claim those aren't really doing what God wants. Instead, I point to the people who don't sin, who in fact do good, but only because they want to be in heaven instead of hell. How moral is it really, to act good only for a reward?
If I knew for a fact that I'd go to hell if I didn't torture and kill a child, I would hate the God who set that rule, and feel that the moral thing would be to disobey Him. (I can't promise I would disobey him, but my idea of an ideal person certainly would.) But in the Bible, God allegedly told someone to kill his favorite son, and the man was about to carry it out when God said the equivalent of 'just kidding'. God was 'testing this man's faith', apparently, and the lesson is to trust that God knows best even if you really don't like what he's telling you to do. I'm not willing to give anyone that kind of power over me. (Certainly not the ordinary human beings who claim to speak for God.) I don't think someone so easily led into disobeying their own beliefs is a good person.
And those people who avoid doing something they want to do only because they think they'll get punished - they often don't really avoid doing it. They do it in secret, or they do borderline things which they excuse by emphasizing the differences (or simply deny). The first is not feasible if you really believe you've been told what to do by an omniscient being, but the second option is very likely to be done by devout believers who obey only because of heaven and hell.
So maybe that ADHD boy was being abused after all. Not by being hit or made to do sexual acts, but by his mother's looks, her comments, her rules, her body language. If a child has been taught, by their parents' behavior, that they are bad and don't really belong in their family, then they have been abused - even if such teaching is not deliberate. And you can't avoid that abuse just by thinking you'll be punished for it. You avoid it by cherishing your child, by working with yourself to avoid feeling so angry with them, by learning to enjoy being with your child.
Sadly, it's considered normal for parents to dislike spending time with their children. My father is excited when he has time off work to look after us. My mother misses us if she goes away to a conference without us. But recently I saw a joke in which a 6 year old boy who had two older brothers was asked what his mother did all day since he entered school, and said 'cartwheels' (turning cartwheels out of joy, because she doesn't have to look after him all day anymore). Children are considered a burden, worthwhile mainly because we grow up into 'real' people and can look after our parents in their old age. Parents say 'I wish you have a child just like you someday, so you know what it's like' and mean it as a curse instead of a blessing.

It's Become Personal

When I first got involved in autistic rights, it was mostly an intellectual feeling of wrongness. I suspected I was autistic, and later knew for sure, but it didn't personally affect me much. Most of the contact I have with overtly anti-autism people is generally a) on the Internet, and b) initiated by me (I have plenty of contact with people who have no clue about autism, but are generally willing to take my word for it, though). The few overtly anti-autism people I've met since leaving school in grade 7 I am usually fairly able to defend myself against. They aren't that big a problem for me.
So at first, I was arguing on intellectual grounds, with little emotion. Not to say that I didn't care, I did, but in an intellectual way. The autistic people I advocated for were abstract to me.
But then I started volunteering with disabled kids. First, I participated in an ABA gymnastics program, with autistic kids and neurotypical kids. But ABA tends to keep you distant from the kids. Next, I volunteered with a program helping autistic kids train their own dogs, as assistance animals. But that didn't last long. Recently, however, I've been volunteering with a variety of disabled kids (though the program coordinator prefers to pair me with autistics) in a physical activity program.
In volunteering, I've met autistic kids. I've also seen the harm people do to them with good intentions. The worst example was twins with separation anxiety in the ABA program whose mother was used as a 'reward' (really, it was temporarily stopping a punishment). Another example, that I actually did more to help, was an autistic boy being gently restrained and redirected for hand-flapping. I certainly convinced them not to require me to do that, and I think I probably convinced them not to do it either by example.
The thing is, now it's not so intellectual. Now, I read things written by a parent of an autistic kid and imagine the parents of the kids I've met saying that. I read about murder of autistic kids and instead of just seeing a wrong, I see a child who died. I read stuff by professionals working with autistics and see the children they work with being treated in the way they advise. One professional said, in a book I read, that 'being teased is what happens when you act weird' and I imagined a young autistic bully victim hearing and believing that. (She actually said this to an autistic boy.) I read stuff by autistics who hate autism and my heart cries out with the thought that the kids I know may feel the same way.
It's still intellectual, because I still have reasoned arguments and logical conclusions. But now, it's also emotional. I realize more that real people are being actively hurt by these attitudes, and I feel intense empathy for them. To those who say 'spend time with an autistic child and their family and you will see how terrible autism is' - I have spent time with them. And rather than seeing a terrible disability, I see a terrible society.

Ethics of 'Mercy Killing'

Robert Latimer recently tried to get parole, but was denied because he showed no remorse. He's a man who locked his daughter in his truck and piped in carbon monoxide until she died. He freely admitted to doing it and has always maintained that it was for her own good. Why? Because Tracy had severe cerebral palsy.

Tracy could not speak and had minimal movement. At 12 years old, she was considered to be at the developmental level of a 3 month old. She had contractures and similar painful physical problems caused by lack of movement and spasticity. She'd received several surgeries. At the time of her death, doctors had been trying to convince her father to consent to her receiving surgery on her hip because spasticity had caused her hip to become dislocated. Her father felt that she would want to be put out of her suffering.

Let's assume we've decided that assisted suicide is OK (by assisted suicide, I mean a person specifically requesting and receiving assistance to kill themselves). Let's also assume that Tracy Latimer was indeed in significant pain. Did Robert Latimer do the right thing?

One big consideration when consenting to treatment (or lack of treatment) on behalf of someone who can't express their own desires is what you think they'd want. If you use the same standard for proxy consent to assisted suicide, then whether Tracy would want to live or die is a crucial question. Can you assume, based on her chronic pain, that she'd want to die?

I've heard of an autistic woman. Like Tracy, she can't speak. Like Tracy, she has chronic pain, due to a variety of physical problems such as migraines, hypermobility and a nerve problem causing agonizing facial pain.

Unlike Tracy, this woman, Amanda Baggs, can communicate her own desires. She types. Does she want assisted suicide? As she says in this post - no. Most emphatically no. In an earlier post, she stated that she didn't want people thinking of her as 'happier now' in an afterlife where she is nondisabled.

In conclusion, even if you support assisted suicide (I don't think I do, though I can't explain why), no one can make that decision for someone else. Robert Latimer, you have no idea if Tracy really wanted to die. You projected your stereotypes of what a life like hers was like, and made the decision for her. For all you know, she was silently begging for her life as you killed her.

Changelings

Just writing to mention that I found a bunch of changeling folktales:

British changeling stories
German changeling stories
Scandinavian changeling stories

It's often theorized now that those stories referred to developmentally disabled people, especially autistic people. Chilling, when you think of how they were generally treated in those tales and how they were viewed.

[Edit: here's another story.]

Madness or Early Death

[Warning: plot spoiler. I can't think of any way to get my point across without giving away the ending of this book.]
I recently got a book called Magic or Madness by Justine Larbalestier. In this story, a girl, Reason Cansino, was living with her mother Sarafina. They were constantly on the run from Sarafina's mother Esmerelda, who according to Sarafina tortured and killed animals and babies in order to do nonexistant magic. Then, when Sarafina has a mental breakdown, Reason is sent to live with her grandmother.
In the course of the book, Reason discovers that magic is real, and that she has magic. If she doesn't use her magic, she will eventually go crazy like her mother and her friend Tom's mother. However, the more magic she uses, the shorter her life expectancy. On a monument to her family, the women listed died at 18, 20, 21, 14, 5, 19, 20, 25, 12, 16, 27, 20 and 48 years old.
The 'madness' that comes from not doing magic in this stories sounds somewhat like schizophrenia. Both Sarafina and Tom's mother tried to hurt themselves and/or others in the episodes that resulted in hospitalization. Tom describes his mother's episode as such:

"'Did she hurt you badly?' asked Reason. 'When she tried to kill you?' She looked concerned, which made Tom squirm. He didn't much enjoy people feeling sorry for him.
'No, Dad got there first. She was waving a knife around saying that she'd kill us. She cut Cathy [his sister], but Dad reckons it was an accident. Cath's got a scar on her shoulder, it's tiny, but.'"

Earlier, he says about her:

"She kept trying to kill herself. Then one time when I was little, she tried to kill me and Cathy too. So she's in Kalder Park now... Mum would never take her meds, ... She thinks they put devils in her head."

Sarafina, too, had had multiple episodes before being hospitalized:

"Sarafina talked to people who weren't there. She insisted we walk in straight lines, for days at a time. Sometimes she got confused, wasn't sure where or who she was. Then I would lead her back to the hotel room or caravan or campsite - wherever it was we were staying - and explain where we were and why and give Sarafina a mathematical or logical problem to solve. She always could. Solving the problem would bring her back. Her episodes never lasted long, and until Dubbo she'd never been scary mad."

In the hospital when Reason visited, Sarafina kept on talking about her mother and acting as if she couldn't hear Reason's replies unless they fit what she wanted to discuss. She didn't give sufficient context for Reason to understand her, so that when she gave Reason directions to find a dead cat hidden in Esmerelda's cellar, Reason thought she was discussing a person. Then Sarafina said "It's not too bad, ... Being insane. It's not too bad at all. There are worse things. It's pretty here."
After thinking about this book, I wondered why anyone would use magic at all. Though clearly the mental illness that results from not using magic is unpleasant, it's clearly better than dying in your teens or twenties. Even the length of time before Sarafina had her breakdown was longer than that, so if you treated mental illness as equivalent to death Sarafina was likely still better off. And as she states, mental illness is not constant unending suffering. She clearly felt it was better than death.
The only way they could justify choosing magic and early death over mental illness is if they view being mentally ill as worse than death. This is an attitude which is not only wrong but very dangerous, because a logical conclusion of the 'better dead than disabled' view is that killing disabled people does them a favour.

An Insight Sadly Ignored

I'm not generally a supporter of Bruno Bettelheim, from what I've heard of him, but recently I found something he wrote that I really wish more people had followed.
In the American Journal of Orthopsychiatry, volume 26(3), pages 507-518, published in 1956, he said:

"All this would be quite easy to see if we would just listen carefully to what the schizophrenic children tell us, at least those who talk. They will let us know readily enough what kind of treatment they need..."

He then describes a case where a 'schizophrenic' girl told Anna Freud, her therapist, that she was a very different person in different situations and therefore Anna Freud really had a very limited understanding of her, seeing her in only one setting. Rather than listen, Anna Freud described it in this way:

"It struck me that here, disguised as a piece of 'technical advice,' we were offered some insight into the basic deficiencies of her ego structure. [and proceeded to give a long and convoluted interpretation which I will not quote here]"

He also has some interesting case studies, showing some issues still around today and probably more ignored now:

"A mother whose schizophrenic child lived at the School had been in prolonged psychoanalytic treatment. She was making good progress, but we felt that her influence on her child was so pernicious that they should remain separated. The mother's analyst thought that the mother needed to test her ability to be a better mother, and supported her in her insistence on a home visit. Reluctantly, we agreed to a visit of two weeks' duration. The child set fire to the parental bedroom while the parents were asleep there. No great damage was done and the parents viewed this as a childish prank. A year later, with the approval of her analyst, the mother again insisted on a visit. We were opposed, because the child, who was functioning quite well within the protected setting of the School, expressed great fear about what might happen on such a visit. Despite our objection the visit took place; then, while with his parents, the child died in a carefully contrived accident."

Murder of disabled children by their parents was certainly present back then. It chills me to think of what it was like for that child - clearly, he knew or suspected they would do something terrible to him. On the other hand, I'm glad that Bruno Bettelheim clearly views the killing of this child as a bad thing.

"Parents considered their boy feebleminded from the moment he was born. Since he supposedly did not understand, they spoke freely of how he ought to be put away, how he should never have been born. Autistic withdrawal led to his being sent to an institution for feebleminded children, where he was badly neglected and where he was often deprived of meals as punishment. This added to his conviction that his parents wished to kill him through starvation. He spent most of his first seven years in phantasies of how he would torture and kill others before they could kill him. (Such phantasies were typical among concentration camp prisoners.)"

This reminds me of Amanda Baggs' description of growing up with the expectation that she'd either be cured or institutionalized.
It saddens me to think that things like this were spoken about in the 1950s, and most people still don't get it. How long will it take before people start listening to us, respecting that we have just as much a right to life as anyone else, and recognizing that we are aware and being spoken in front of with hurtful statements hurts us too?

This is What Murderers Are Like?

While searching for stuff on parents murdering disabled children, I found a different case. Three eight year olds were murdered. When they asked a probation officer who he suspected, he named a bipolar 18 year old because 'he wore a black leather coat in all weather and listened to "devil music" such as Pink Floyd and Metallica.'
They questioned that boy and his developmentally disabled 17 year old friend, and the 17 year old confessed that he, the 18 year old and another friend had stabbed and raped the three boys. The problem: the victims had been beaten instead of stabbed (they had what appeared to be stab wounds, but were actually from wildlife), and had not been sexually assaulted.
Despite the evidence against their guilt, they were convicted. The 18 year old and 17 year old were convicted to life in prison, their friend to the death sentence (this was in US). Luckily, before the last sentence could be carried out, the case 'fell apart' and the three teens were declared innocent.
My question is: how much of this is related to the disabilities that at least two of the suspects had? I know of a bipolar man who was shot as a suspected terrorist, and it seems bipolar people often seem similar to the stereotype of a murderer. Was the fact that the one boy was bipolar related to this?

Murder of Kids With Attachment Disorders

This is another category of kid who are often murdered by caregivers. Reactive Attachment Disorder (RAD) is caused by a) living in an environment unsuitable for attachment, such as with an emotionally neglectful parent, and/or b) losing a primary caregiver, such as with foster or older adopted kids. These kids have serious difficulty trusting others because they either lost or never developed the basic expectation that their parent will always be there and help them. As a result, they can have serious behavioral problems and often don't give parents the same kind of 'rewards', such as expressing love and trust. Some parents end up killing these kids. Here's some news stories about this:
http://www.newsweek.com/id/74385/page/1
http://www.ratbags.com/rsoles/comment/candace.htm (this one about an abusive therapy)
http://www.salon.com/sept97/mothers/renee970930.html

Interesting Information on Punishment

[Note: This is the Second post I've made today.]
I'm reading a book called Treatment of Behavior Problems in Dogs and Cats. What it's about is evident from the title. The author has the annoying habit of assuming that the animal behaviorist is always right when they and the owner disagree, and says people would be more likely to get rid of a cat whose marking is damaging their rugs than the rugs themselves (whereas I'd much rather have a marking cat and hard floors than get rid of my cat), but I really like his section on punishment.
One of the things he says is:
"Laboratory experiments and everyday experience indicate that the most likely effect of punishment is to produce only a temporary suppression of behavior. Behaviors which have been apparently eliminated with punishment methods alone tend to recur again and again in the future... Under special circumstances, punishment can sometimes be successful in producing long-term suppression of behavior. But here the punishment must be of traumatic or near-traumatic intensity, which makes it undesirable on both ethical and practical (i.e. side effects) grounds."
I wish the Judge Rotenberg Center would read and understand this. If they claim it's not traumatic to zap people for misbehaving, therefore it has only a temporary effect. If it is effective long-term, then they must be traumatising them. Incidentally, some people, like myself, tend to react to some punishments by consciously trying increase the behavior, and when that occurs, only traumatic punishments have even a short-term effect, and often only very severe ones (for example, I think I would comply if I was threatened with death for disobeying). The punishments school threatened me with were traumatic but not severe enough to stop the behavior I was desperately clinging to. I felt like if I let them win, I'd lose my self, and those are pretty high stakes.
Another thing he says is:

Punishment can have the side effect of eliciting aggressive behavior if it is painful, elicits fear in a fear-aggressive dog, or is seen as a status-threatening challenge by a dominant aggressive dog.

The shocks used by the Judge Rotenberg Center are painful. No wonder aggressive behaviors tend to be more common after a child is zapped. (For example, Linda Cornelison was apparently only aggressive when she was shocked.)

As a side note, here's something he said about medications:

Hart and Cooper (1996)[*] raise the more basic question of whether it is ethically justifiable to administer a psychoactive drug to an animal without altering the underlying factors which are causing the problem - above all in cases where the symptoms tend to recur after discontinuation of the drug and, therefore, it might be necessary to administer the drug to the animal indefinately.

I wish my school had a) read this, and b) recognized how much they were causing my 'misbehaviour', rather than insisting that everything would be fine if I got Ritalin. (Which was probably inaccurate anyway, since much of my behavior was because of anxiety and therefore would be worsened by a stimulant.)
Ettina

Murder-Suicide with Autistic Kid

Kevin Leitch posted a blog entry about a woman who killed her disabled son, who is described as autistic by some and Fragile X by some. I wrote a response, but he'd closed the commenting, so I'm posting it here.

"To echo what Amanda has said, there have been reports (mercifully few) of mothers murdering their children – with and without the subsequent suicide of the mother – and the majority of them involve “typical” children."

"Yes, this was murder. Murder of a child, followed by the mother immediately imposing capital punishment on herself.
As a person on the autistic spectrum, a longtime sufferer from severe depression, and the mother of an autistic child, I have compassion for both mother and child here. Yes, she murdered her son. Yes, it was wrong to murder him because he was autistic.
But rather than pointing the finger at the mother, I see far more fault in a society that would leave her unsupported until she reached the breaking point which resulted in this terrible tragedy. I have been close to that point before, and I can tell you that- as a person with few financial and social resources- the support offered to me and my children has been woefully inadequate."

At one point in Half Breed, Maria Cambell (I think that's her name) described thinking about killing herself and her children. She changed her mind at the last minute. She felt like her life was intolerable, and since her children would only suffer the same sort of stuff she had, it would be better to spare them that.
I think most people reading that part view it as Maria Cambell being the target of discrimination to the point where she was very depressed, and her planning to kill her children as well as a twisted form of caring, considering her mental state.
But with disabled kids, it may be seen as perfectly reasonable, the discrimination aspect is usually ignored, and most people devalue the child(ren) killed.

"The nurse said, “you are getting better you are walking more each day” and the depressed person said, “No I’m not” The nurse said, “look, you walked all the way around the circuit…” the man replied, “Yeah, well you someone created (built) a shortcut through the middle of the center section we were walking around so that I was only walking half as much”"

When I get told I'm making progress, and given examples, I tend to say "that doesn't matter. It's this that matters." and point to something unchanged. For example, Mom says I've made progress because I have less meltdowns and the meltdowns are less severe. I respond that I haven't made progress because I feel just as trapped during meltdowns.

This is a list of institution-related links I want to print out later. I'm posting them here in case anyone wants to look at them.

http://csindy.com/csindy/2003-07-24/cover.html
About two different disabled children who died due to restraints in the same insztitution. One was Orlena Parker, a depressed 15 year old, and Casey Collier, a 17 year old autistic. Both of them were overweight and held facedown, which is especially risky for people in that weight range.

http://www.caica.org/NEWS%20DEATHS%20Casey1.htm
Another story about Casey Collier's death. Apparently he vomited while restrained, which might have contributed to his death (by reducing air flow). He was also asthmatic. As an asthmatic myself, I know that even just the terror of restraint can cause an asthma attack. Combined with being facedown with someone on top of you, breathing would be very poor.

http://www.isaccorp.org/devereux/devereux-colorado.03.13.03.html
More about Orlena Parker and Casey Collier.

http://www.ualberta.ca/~jpdasddc/abuse/ICAD/digests/restraints.html
A discussion in which people are outraged about restraint deaths, including Casey Collier's death.

http://ballastexistenz.autistics.org/?cat=47
Amanda Bagg's institution entries.

http://www.inclusiondaily.com/news/institutions/nj/bancroft.htm
Stuff about Matthew's Law, a proposed law limiting aversives which is named after an autistic 14 year old, Matthew Goodman, who was killed by restraints.

http://www.judgerc.org/
Judge Rotenberg Center's website. This is a center for people with "behavioral problems" which uses aversives, most well-known of which is electric shock treatments. Some people have died due to these aversives. Others have been traumatized.

http://normemma.com/lcorneli.htm
Information about Linda Cornelison's death. She was a 19 year old, developmentally delayed, nonverbal woman. After being starved for a long time, she started acting ill. She was repeatedly punished for these behaviors, meanwhile nothing was done about her illness. She died of a perforated stomach, thought to be related to starvation. She had extensive ulcxers, which probably caused the perforation.

http://www.nospank.net/jrc-1.htm
A list of links about Judge Rotenberg Center.

http://www.boston.com/news/local/articles/2006/05/22/a_question_of_tough_love_vs_torture/
About Antwone Nicholson, who was traumatised by JRC. Antwone, 17 years old, once said to his mother that she must not love him because she let them hurt him. His mother is now suing the state for sending him there.

http://edwatch.blogspot.com/2006_05_21_edwatch_archive.html
Someone's blog entry about Antwone Nicholson and JRC.

http://www.nospank.net/jrc-2.htm
Another article about JRC, with stuff about Antwone as well as others.

http://www.aspergersexpress.com/restraints_and_aversives.htm
The Asperger's Express opinion statement about restraints and aversives.

http://users.1st.net/cibra
CIBRA stands for Children Injured By Restraints and/or Aversives. It is an organization representing parents who are outraged at how their children were treated.

http://radio.weblogs.com/0119802/
A number of articles about institutional abuse along with comments.

http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjcxN2Y3dnFlZUVFeXkzJmZnYmVsN2Y3dnFlZUVFeXk2Mzc2OTg1
A description of an autistic boy, Nicholas Aquilino, age 13, who was severely traumatised by an institution. He will not leave his house and has been diagnosed with post traumatic stress disorder.

http://www.neurodiversity.com/restraints.html
Neurodiversity.com's list of links about restraints. At the top are links to other relevant link lists.

http://www.winonapost.com/archive/www/041303/1news.html
A story about Bailey Philipps, a 12 year old developmentally delayed, autistic girl who was physically abused in her school.

http://www.geocities.com/growingjoel/iamnot.html
Joel has a list of "I am not" statements such as "I am not an object." A number of them refer to attitudes which are prevalent in institutions.

http://www.prisonexp.org/
An account of the Standford Prison Experiment. In many cases institutions for disabled people are worse that prisons, because disabled people are more devalued.

http://www.feministpeacenetwork.org/survivors.htm
Women survivors of psychiatric abuse talk. Most of them were diagnosed as crazy.

http://www.cchr.org/index.cfm/5353
This is a page for reporting psychiatric abuse. It lists as one of the things "falsely diagnosed". So if you really do have the condition they diagnosed you with, is it not abuse?

http://www.mindfreedom.org/
Mind Freedom is an advocacy group for psychiatric survivors.

http://www.oikos.org/psychabuse.htm
Abuses in a Montreal institution.

http://www.astraeasweb.net/politics/badpsych.shtml
Astraea's page about psychiatric abuse.

If you can suggest more links, please do so.