NTs Are Weird

This has been late in coming, but that’s in large part because I wanted it to be a considered post, not an impulsive one. Officer Johns and the millions of people affected by the holocaust deserve that.

On June 10th, Officer Johns was at his post at the United States Holocaust Memorial Museum. It’s a sad testament to the state of the world that, at a museum dedicated to proclaiming the horrors of hate, that a guard would even be needed. But, sadly, guards are needed there. Spotting a visitor whom he thought needed assistance opening the door, Officer Johns unknowingly opened the door for his killer. The killer (this blog’s policy has long been to not deem people committing murder to be worth of a name, but rather place emphasis on remembering the victim) shot Officer Johns with a rifle he was carrying. Officer Johns died shortly afterward.

It amazes me that someone, such as the killer in this case, could have such hate for an entire group of people (“Jews” in this case, although Officer Johns was not Jewish, he was associated with an institution that remembered an atrocity that affected the Jews more than any other group) that murder would be justified in their eyes. Yet, in some people’s eyes, murder is justified in that case.

In some ways, Officer Johns was the six-millionth and one victim of the holocaust.

I’ve been to the US Holocaust Museum several times – it is an extremely sober place to visit, but I encourage anyone reading this that gets the chance to visit. The act of violence that took Officer Stephen Tyrone Johns’ life shows us all that places like the Holocaust Museum are vital. Nothing could more succinctly demonstrate the need of such a place.

The museum is collecting donations for Officer Johns’ family. 100% of the money will be given to Officer Johns’ family. I encourage all who are able to consider a donation, not just to financially help a family who has lost a father, but also to show the family and the world that hate cannot be tolerated.

Last week, I attended a service for the Transgender Day of Remembrance. The day of remembrance is a time when people remember people who were killed because their expression of gender wasn’t “right” in someone else’s eyes.

As I participated in this event, I wondered, “Why is it that this event is not well known and not attended by members of nearly every social, religious, and civic organization? Can’t we agree that murder is a horrible thing?” There were many people from many walks of life there, but there were also large segments notably missing.

It’s clear that there is a political component at play. In this area, the political component is simply that some people find the idea of homosexuality repulsive, and thus can’t even associate with an event designed to remember that people who did no wrong to anyone else were killed simply for being different.

Of course, when people are asked, “Why would your church or civic organization not attend?” you are met with responses along the lines of, “We can’t support homosexuality”. In other words, the idea that homosexuality is sin is too important to “protect” (sound like the marriage debate?) that showing opposition to murder is politically harmful in many people’s eyes.

This doesn’t surprise me completely – I’ve seen similar trends in autism, although with entirely different motivations (not moral or religious, but rather political views on support services). Too often, I’ve received hate mail about my site because I point out that murderers of autistic people should face the same criminal penalties as murderers of non-autistic people. I am told about the hard life the murderer had, and how raising an autistic kid (yes, kid – despite the fact that not every autistic that is murdered is a kid) can push someone to the edge, and that these murders aren’t a time to cry for equal treatment under the law, but rather a time to petition government about support needs (I’ll also note that this clearly doesn’t apply to murders where, for instance, an autistic walking down the street is murdered by strangers just because he is different).

Well, yep, we do need better support for autistic people and our families. I’ve never disagreed on that. But it doesn’t justify murder, nor should it keep people from making a strong statement against murder.

Respect for life isn’t political, or at least it shouldn’t be. Whether the person has the “wrong” expression of gender, is autistic with unsupported parents, or whatever else, politics shouldn’t make murder okay. We shouldn’t be mixing respect for life with politics.

Regardless of politics, I’ll remember the people murdered out of hatred. I’ll remember the 31 people murdered in the last year because of hatred for how they expressed their gender. The world has lost much with these murders.

This week, a murderer – who killed her autistic daughter – was sentenced to prison for her crime. She received an appropriate sentence and will hopefully be behind bars for a long time. Obviously, this has met with a lot of support from the autism blogging community. I, too, support the sentencing.

That said, we must be careful. It’s not just “wanting a cure” that causes autistic people to die.

No, instead it’s much more complex. It’s a set of social barriers (yep, I know that will irk some people that I call these things barriers) like the expectation of linguistic communication by society. If you don’t communicate with language, you get inferior medical treatment. Sure, that’s not necessarily any one person’s fault, but that doesn’t make it any less real. Are those deaths worth fighting for?

A trend I’ve seen for a while in the autistic advocacy community is a lot of effort focused on advocacy that is easy. While I won’t ever tell anyone not to advocate, if their choice is between the easy and doing nothing, I do suggest people think long and hard about where they focus their time, and not just assume that someone else will deal with the other things.

Here’s the reasons, off the top of my head, that autistic people are killed:

1. We’re a lot of trouble. We can make life difficult for parents, caregivers, institutional staff, etc.

2. We are perceived as ruining people’s lives. When we aren’t the child or adult that others expect, some will “correct” the problem through murder. I think this, not the attempt to cure, is what killed Katie.

3. We are just as subject to abuse, neglect, and mistreatment as any other person.

4. Confrontations with law enforcement don’t always go well for us.

5. We don’t have the same access to medical care, and are often mistreated by the medical system (having serious complaints ignored, being seen as “drug seeking”, or being prescribed inappropriate treatments at a greater-than-normal rate). It doesn’t help that most of us can’t pay for private health care.

6. Institutionalization has been shown to increase your chances of death, and this has been done when variables such as “severity” of condition are controlled.

7. Psychological care sometimes kills us, often through misprescribed drugs. You can spot these in the newspaper as they usually refer to a healthy young man or woman dying of a heart attack well before the ages at which that is a significant risk.

8. Behavioral “control” – the number of autistics who have been killed because they misbehaved is horrifying. Restraint is potentially DEADLY FORCE. Yet it isn’t treated with the seriousness that potentially deadly force needs.

9. Some of the methods sham artists sell to “cure” us can kill us – such as being sat on during an exorcism or being prescribed dangerous IV drugs to “chelate” us.

10. We are often housed in bad neighborhoods or with roommates that are dangerous.

11. The largest, by far, reason we die unnaturally is through suicide. I can’t prove this, so don’t ask, but I know in my gut that this is true.

All of these need to be fought against. Changing parental attitudes is part of it, but that doesn’t necessarily help an adult in an institution. We need to fight all of these problems, not just the ones that science can easily dismiss.

For Katie, though: I hope you can rest now.

One of the arguments used by people who “understand” murder of autistic people is that someone who doesn’t get enough sleep at night will do, essentially, harmful things. People who care for autistic people are people who get less sleep, or so the argument goes.

While it is true sleep deprivation does mess with things, such as our ability to make good moral decisions, I find this argument rather peculiar.

After all, talk to a parent who raised a child. Ask that parent about the first bit of the child’s life. Better yet, ask a parent of a large family.

You’ll hear that the parent got very little sleep. Yet, if that parent would have killed the kid due to the stress, few would “understand” the murder the way murders of autistic people are “understood”. In the case of the large family, the sleepless nights very well might have went on for a decade or more.

Perhaps the difference is that society sees raising a neurotypical child as fairly routine. Sure, it’s a tough job, and it is a lot of work, but it’s also routine (NOT easy or predictable, but rather a thing a lot of people can relate to). A lot of people raise children. In addition, the child who wakes up several times a night at 2 months old is not exactly unusual – in fact, many parents expect that. But the autistic 10 year old who wakes up at night is different, and because this is different than expectations, it’s now “more understandable” why a parent would be “driven to murder” the child.

The other difference is that the parent expects the 2 month old child to grow and one day sleep through the night. A 10 year old autistic who “lacks” certain skills is assumed to be someone who will never acquire those skills, even though scientific evidence doesn’t exactly agree with this assessment. We don’t expect babies to stay the same, but we do expect 10 year olds who are “missing” some “skill” to.

I support respite care. I think it is a wonderful use of my tax dollars when it’s funded with tax money. I believe every parent (including the parent of the newborn) should get some time “off”. And I do think it is unhealthy when that doesn’t happen. But it is no more “understandable” to murder a 10 year old autistic than to murder a 2 month old neurotypical infant.

If someone is near the point of not being able to avoid harming someone else, they have a moral responsibility to remove themselves from the situation by choosing the route of least harm. That may involve child protection agencies. It may involve giving your kid to a neighbor and saying, “I’m about to kill him. Call the cops.” It may need to be placing the child in an institution. It may result in all sorts of problems for the kid. But any of these outcomes are better than death. Often there are better choices, too, but I wouldn’t fault any parent who chose any of the above over murder. There is always a choice other than murder.

So, if you are a parent, feel free to talk about nearly unbearable stress. That’s fine. But that isn’t justification for murder.

Fortunately most parents, even very stressed out ones, would never kill their child. I applaud all parents who managed stressful times and sleepless nights without harming their child – that takes a lot of patience and control. At the same time, I will never “understand” the excuse of “sleep deprivation” when it’s applied to the murder of autistics but not the murder of newborns.

(really, I’m not writing this to talk about mercury – I’m just using it as an example to explain)

Recently, police raided a doctor’s office. This doctor, Roy E. Kerry, was providing a controversial (and unscientific) treatment for Abubakar Tariq Nadama, a young autistic boy from England who was taken to the US because this therapy wasn’t available in England.

The therapy was chelation – the theory is relatively simple to explain. The theory is that heavy metals cause brain damage (but strangely advocates of this theory don’t believe these metals are damaging other organs that are typically damaged by genuine heavy metal poisoning – it just affects the brain and gut). By “chelating” the heavy metals, or unbinding it from the cells it has damaged and excreting it (hopefully not redistributing too much), those cells would no longer be damaged or they would become undead or something (this would be a very rare form of brain damage indeed – brain damage is not typically reversible). The advocates of this theory believe that much of what is called “autism” is really “heavy metal poisoning”. They are wrong, but that is beyond the scope of what I want to talk about here.

There are a couple problems with what Roy Kerry did. First, chelation therapy for “heavy metal induced autism” is untested and unproven (ironically this is what people who chelate claim about vaccines – that vaccines are not proven to be safe, despite having far more testing than chelation). Second, he used the wrong chemical – a chemical with a similar name to the one that advocates of this theory suggest. Unfortunately this chemical removed a metal that is very vital – essential for life – calcium. As a result, 5 year old Abubakar died.

I expected even the chelation community to express outrage over this preventable death (it was even preventable if what they feel is proper therapy was done rather than the mistake Kerry made). Instead of outrage, however, there is sympathy. Roy Kerry, after all, was trying to help autistic people in their eyes. So that puts him beyond suspicion. In addition, it’s felt that there is a global conspiracy against Kerry by the drug companies (who make vaccines) to sacrifice this “honorable” doctor for the sake of the vaccine trials soon to start (which is strange, since Kerry’s guilt or innocence has no bearing in court on whether or not vaccines cause autism).

Of course that’s not the only area free passes are given. Other times, free passes are given to institutions and schools. There are notorious institutions, where inmates have died, which are defended fiercely by parents of other inmates because they “helped” their kid. Nevermind a preventable death or two, they are helping.

Recently, an Oklahoma (USA) school district fired a special education teacher on grounds of abuse. Three paraprofessionals testified that this abuse occurred, and the school district felt that they had enough proof to justify firing the teacher (wrongful termination would expose them to a lawsuit, after all). Reading the comments to the story I linked above, I am disgusted. Simply put, there would not be any question of what should be done if the teacher worked with non-disabled students – even an accusation of abuse would remove that teacher from teaching the children, and every parent would be completely supportive of such actions. Simply put, we must error on the side of caution and protect the children when it comes to abuse. But, because she was a special education teacher that taught difficult students, she is held to a different standard by many.

Parents, too, sometimes get a “free pass”. After all, they have a difficult (truly) job to raise a child, and some parents find an autistic child especially difficult to raise. Autism Speaks, a major US charity (one might make an observation that there is not a single autistic person speaking on the board of Autism Speaks – imagine a woman’s organization with no women on the board or a gay organization with no gays on the board) put out a video where a mother (in front of her autistic child) talked about wanting to drive off a bridge with her daughter (see one parent’s reaction). While there has been some reaction among autistic people (few of us want to be murdered), and also among parents, there has also been a lot of “understanding” for the parent who said these things. After all, raising an autistic kid is hard, so it’s okay to have murderous thoughts towards that child. This type of hate speech would not be aired on a major TV network if it was directed towards a racial minority – nor should it be. But it also shouldn’t be aired when directed towards autistic people.

Several parents have received no jail time (or very light sentences) after murdering their autistic children. The courts, prosecutor, and juries typically talk about how hard raising an autistic person is. So you can even get a pass for murder if you are forced to endure the horror of raising an autistic child (yes, that’s sarcasm).

(Note – because if I don’t put this disclaimer some people will read into my writing: I know that there are plenty of good parents, teachers, doctors, and schools. I don’t believe in good institutions, sorry. I recognize the work done by the people who not only have good intentions but are working towards those good intentions in a way that is not harmful to autistic people. My comments are not addressed to these people.)

These “free passes” are a result of prejudice, plain and simple. They are given when people believe that autistics are truly “untouchables” and so awful to have to “deal with” that it gives the person some sort of “indulgence”. Instead of paying the church some money and being able to commit some sin without fear of having to pay for that, society too often accepts payment in the form of having to deal with one of us.

Apparently, if you are responsible for the basic needs of someone else, it’s more okay to murder than it would be if they are a stranger. Especially if you love them, although that’s not a requirement for leniency.

Every time an autistic person is murdered by a family member who cares for them, I brace myself. First, I’m sad that another autistic person has been murdered. But, secondly, I fear the public reaction, as it reminds me exactly of how society views people like me.

When an autistic person is murdered by their caregiver, we typically hear, as a very first response, about how difficult caring for an autistic person is, as it is felt this is actually relevant. Well, I’ve worked for difficult bosses before, but just being difficult I doubt would have got me much sympathy if I killed them. But I suspect if my boss was instead my child, disabled wife, or mother whom I was taking care of, especially if I literally had to wipe their butt (that’s a biggie in people’s eyes), then because of the stress of caring for them, murder would be at least a little more understandable.

The assumption here is that not only is being disabled a horrible and pitiful condition, but taking care of someone disabled is horrible too. Perhaps that’s one reason paid personal assistance receive so little pay. This assumption is never questioned, it’s just taken as fact. Taking care of someone who is disabled is an awful thing that someone wouldn’t wish upon their worst enemy.

Yes, I recognize that lots of people – including many family members of disabled people – are stressed out, overworked, and overwhelmed. But only when they are taking care of disabled people is murder considered okay.

And it’s getting worse. Public opinion is once again swinging back towards legal “mercy killings.” As we’ve seen recently with some high profile cases, a simple claim that someone wanted to die before they became disabled is enough to convince the courts – despite lack of any evidence except one person’s second-hand recollection. In some cases, not even that has been required. It’s not going to be a long time before the grandma that chooses not to spare her family the indignity of having to see her as an old person will be shunned, derided, and even hated. After all, she should know that it’s better to leave the world with dignity. The good thing (sarcasm) is this might help fix the future bankruptcy of social security, and lower the cost of health care for those of us lucky enough to stay young and healthy (unfortunately we’ll too find ourselves in grandma’s shoes – and some of us are already disabled and living undignified lives).

I don’t know what the solution for this is. I’m not sure the secular world actually has a solution to this, as it seems without a higher authority there is nothing to say that “life is valuable” – it’s simply my word against someone else’s – someone else who thinks that only “some life is valuable.” But I do know that I am scared to death to someday receive care from someone who considers the work as insulting and horrible, while receiving almost no pay, and somehow thinks that gives them the right (and it appears that it does) to treat me however they want as compensation.

I spent this morning updating this page about the murder of autistics.

What saddens me is that we truly are second class victims. Our lives simply aren’t worth as much to the world when compared to the lives of non-disabled people.

Every time I update this page, I feel sick and sad. Focusing on just this aspect of the world gives you a bad view of humanity, especially when far too many of the murders are committed by parents.

Fortunately, there are parents who love their autistic children, never considered killing them, and never will consider killing them. These aren’t just parents of the “good” autistic children, but many of these fantastic parents are parents of children that require a lot of effort to raise into adults. Even though there are difficulties, they look at their children with love and joy, glad that they came into their lives. And it’s nice to see these parents.

Whenever I get particularly depressed about the horrible parents out there, and society’s acceptance of their horrid acts, I remind myself there are also some very good parents who are fighting more than one battle. Among the hardest battles they fight is the battle against what the world tells them they are supposed to feel. They fight against the world when the world tells them that they should feel horrible, sad, depressed, even murderous. Instead, they look at their children with love and joy. Yes, they still clean feces off the walls, they still worry about their kids’ futures, they are desperately hoping for the day when their child will write an eloquent essay about how he feels. But these very real concerns don’t negate the fact that their child is beautiful and wonderful, as all children are meant to be in a parent’s eyes. They fight the battle of other people’s prejudice by simply showing joy and happiness when they are with their children. It is sad that being joyful about a child is something that has become a battle, but for these parents it is. It’s a battle to walk into a public place with an autistic child and not be beaten down by the shame and embarrassment and sorrow that others expect you to feel. I admire the parents who manage this.

So, to the parents who have positive views of their kids (and don’t see them as “train wrecks”, simply as sources of “rivers of diarrhea”, suffering from something “worse than death”, “lost”, “hopeless”, or whatever other negative term of the day is in vogue), thank you. It helps keep me from slipping into depression over the state of the world.

Yesterday, 12 year old Ulysses Stable was murdered by his father.

Predictably, many people are using this to point out how difficult it is to raise an autistic child, and how more services such as respite are needed by parents. In fact, even autism advocacy organizations have spoken, in response to reporters’ questions about this murder, about how hard it is to raise an autistic.

I’ve seen multiple blog posts on the internet calling for more services, referencing the murder as a wake up call.

I have one thing to say to that: NO!

A life has ended. A child is no longer here because his parent killed him. The last memory that child will have of earth is his father inflicting pain, and then death, upon him. This is not the time, nor the place, to talk about family support. It’s the time to grieve and remember that a precious life was lost.

It certainly isn’t something to be used in a form of blackmail to try to get the government to give you what you want, citing how this wouldn’t have happened if only the government provided each parent with exactly the support they want.

Sure, there is a need for more respite and parental support. I agree with that. I disagree that murder should be used as justification. There is no justification for premeditated murder (as happened in this case). This child’s father planned to kill the child, and had plenty of time to “come to his senses”. If it truly was an issue of not thinking he could cope, there were ways of handling that too which, while the consequences may not be good (“child abandonment”), the consequences surely would be better than murder, at least from the child’s point of view.

So, please, don’t use this child’s horrific death to lobby for support. The support autistics need is the societal recognition that our lives have intrinsic value, and are not disposable.