Firstly, there is a comment function and I can use it. I'm not much for ranting about people where they're unlikely to read it - if I was planning to do so, I'd post a link to it/recopy it here.
"--as did the family of one drooling Angleman's kid who write a blog FOR him in the same insipid way your maiden aunt writes a Christmas newsletter from her cat!"
I find it offensive when people write things written from the perspective of a *real* person who can't talk or write, but I don't express my offense in such a rude manner.
"Is it ok for these children to ruin their siblings' lives while their guilt-stricken parents romanticize their value as lifeforms, yet this blogger cannot express her incredulity at the horror of it all? Is some Angleman's moron going to be surfing the net for stock quotes and get his feelings hurt? Keep perspective, readers, I beg you!!!"
Those siblings weren't saying their lives were ruined. And yes, it is much better to say that people have value as human beings than to make fun of them. As for whether Angelman people's feelings are hurt by this: probably not. But it has hurt the feelings of those who love them, it encourages views that - expressed in other venues - do hurt them, and it hurt my feelings, as a high functioning autistic person, to see any disabled people described in such a manner. I bet many people don't pay much attention to the specific disability - rather, they just think generically of "retards". I happen to know that many Down Syndrome people surf the net, I doubt they appreciate "retard jokes".
"Folks,ONCE AND FOR ALL, the writer of this blog did not post any hateful comments on your A.S. kid websites!! (But, yowza did she ever get some nasty flamemail back from you A.S. parents who have obviously forgotten that normal kids deserve respect and tolerance, too!)"
I don't approve of flaming people. Whether or not I agree with their opinions, there are better ways to express it. However, many of the posters who've complained about the Angelman Syndrome post *were not* flaming. They presented a reasoned argument why Larkin should not be doing this. The person who asked what Larkin's gender was and called her ugly was out of line, but not all the posts were like that.
"She merely LINKED to comments YOUR OWN children made about their hellish lives with their violent, uncommnicative, sleepless siblings whom you parents will insist "blessed" their homes, no matter how horrid the reality might be. It must be really hard to convince yourselves and everyone you meet that having a severely disabled child is an uplifting experience which qualifies you for sainthood."
They are not violent, uncommunicative or sleepless. They can be a bit rough, like overgrown toddlers, they communicate through behavior and sometimes signs, single words and assistive communication devices, and they sleep, but less often than most people. Having a severely disabled child does not automatically make you a good person. Some parents don't manage to look past their prejudices to see what a wonderful child they have, those who do, still make mistakes like any other parent. But if you give the kid a chance, they will show you what is really important. If you have ever gotten to really know and love a severely disabled person, you know that they are beautiful in their own way.
"The truth is, you HAVE to believe this bum luck happened for some good reason: it's a survival tactic. I feel sorry for your situation, but there's nothing wrong with truthfully stating that humans with A.S. often take more than they give."
Everyone, if given the chance, can give love, and love is so precious, it makes all the other stuff worth it. And you don't HAVE to believe there's anything good about severely disabled people to be a parent of one, it's just that unless you are blinded by your prejudices that fact is obvious.
"Be careful not to fall into "Terry Schiavo Syndrome" where parents project all kinds of intellectual and emotional depth onto the hopeless case."
The opposite is far worse - treating thinking, feeling people as nonpersons. A number of people who were considered "hopeless cases" can attest to that. Towards the end of the http://www.gettingthetruthout.org/ website, about autism, the author says the following:
"People made a lot of assumptions about me.
"I can't even say that they only saw my outside appearance, because they didn't see that.
"They just saw their twisted interpretations of what my outside appearance meant.
"A person devoid of motion, they thought, must be devoid of emotion, awareness, thought.
"And a person devoid of emotion, awareness, and thought, must be defective and bad."
And:
"People who've met me have still openly questioned whether I'm capable of communicating.
"People talk about me like I'm not there.
"People put me in boxes of empty shell and genius.
"Neither box fits. I'm just me."
And then:
"the conversation,
"It starts without me.
"They talk like I'm not aware of them.
"Then... I say something.
"To mask their shock that the Thing can type.
"They talk about how amazingly smart I am.
"I wasn't aware that typing a sentence made me amazingly smart.
"So I know they thought I was something else to begin with.
"Something that does not even exist except in their heads.
"But they would deny it to their last breath.
"Being good shiny liberals, they don't like to look prejudiced."
Then she quotes another autistic woman, Sharisa Kochmeister, who said:
"Why, oh why can't these fools just allow us 'non-verbal' people to be people rather than trying to depict and keep us as some kind of non-communicative, unthinking, unfeeling 'vegetables?'" From http://www.users.dircon.co.uk/~cns/sharisa.html
In a list of statements that should go along with any pictures of people like her, she says:
"I am not an empty shell. Nobody is.
"I am not a walking automaton devoid of anything inside me. Nobody is.
"Nobody kidnapped me. I am right here. As are all of us.
"As we are now, all of us are people and always will be people."
"We're here whether you see us or not.
"We're real people whether you see us or not.
"Our existence, our worth, and our personhood are not dependent on you."
"Our place in the world is not always where you or we intend it to be.
"Our place in the world does not always make sense.
"Our place in the world exists as we are now.
"Don't ever forget that many of us are saying this to you with actions.
"Every moment of the day.
"Just as loud as we would if we had the words I have now."
"It should also be noted that my children, including this blogger, attended schools where ALL children were fully mainstreamed. This pretty much boiled down to neglect of the average and mildly challenged children while teachers poured inordinate amounts of resources onto the obscenely overindulged special needs students."
A sad situation. The solution, in my opinion, is to fund teaching better so that *all* the children get what they need. I spent much of my school years feeling my brain shutting off from boredom, while shoving my hurt at being bullied down and feeling basically like a ticking bomb. In another circumstance I might've killed myself and/or other students, but I managed to get kicked out before that happened. That whole unhappy situation could've been avoided and I could be happily enjoying school if I was just given a chance.
"Can't we all agree that the situation of a sick family member is tough all around? I doubt if a blogger made light-hearted remarks about a senile grandma or her one-legged uncle you'd be so freaked out."
I would be offended by that as well. As for the one-legged uncle, in that case you'd probably get amputees mad at you - they surf the net, you know. I don't consider disabled people sick - sick is when you are in pain, or dying. A happy, energetic, healthy person needing constant care isn't sick.
"Honestly now--BACK DOWN, already and go watch your kid,who is NO ANGEL and has probably folded himself into your deckchairs while you were busy flaming a college student!!"
What about those of us who aren't parents? I have plenty of free time to post comments on blogs. And parenting is not just the everyday care of a child. It is also advocating for your child, which involves confronting injustice regardless of who is perpetrating it.
"Maybe I'm the lone utilitarian here, but I've thought about the possibility of having a mentally disabled child. I know the tests available do not predict every, or even most of the known mental handicaps. I, personally, plan to use every available measure to prevent my children from being born with any condition that prevents them from being self-sufficient; yes, by this I mean abortion."
I have a condition that often makes people unable to care for themselves. I probably will live independantly, although it might be tough, but I do not approve of aborting someone like me, even if they will never look after themselves. That is discrimination. No, I'm not just objecting to this because I'm pro-life. I believe life begins once there is brainwave activity (note: severely disabled people *do* have brainwave activity, I've heard some call Terri Schiavo braindead and I want to head this off because it's not true). However, I'm opposed to measures designed to detect developmental disabilities and prevent those kinds of people from being born, even if it's preimplantation genetic diagnosis, where the cells haven't even differentiated. I'm opposed to it for the same reason I'd be opposed to people trying to figure out at that stage what the child's skin color will be so they can prevent dark skin. I believe that your worth is not measured by traits like skin color, abilities, gender, etc.
"And should I find myself incapable of producing a self-sufficient human being, I would either adopt, or perhaps just spend the enormous amounts of money that go into raising a child in America on a few hundred children from less fortunate parts of the world."
If I had to choose between a child who would be cheerful, caring and nondiscriminatory and need constant care throughout their life, or a child who would be unhappy and mean to others and look after themselves, I'd choose the first. No hesitation. However, I'd want to find a way to prevent the second one being unhappy and mean while still having them.
"I understand that many people are morally/religiously opposed to abortion, and that once a child is born, you are obligated to care for it, despite any and all disabilities. Nevertheless, it pains me to think about the hundreds of thousands of dollars poured into a single non-functional child--basically a cash sink--when that same money could be divided up and invested in economically disadvantaged children in other countries or even in our own country."
It pains me to think about people who go along their lives viewing certain kinds of people as better than others based on cost/benefit analysis, missing how everyone is priceless, so the benefit of a person's existance outweighs the cost.
"And lastly, regarding the individual who cited the odds of attachment disorders in children who are adopted past a certain age.... if you aim was to compare Angelman's syndrome and attachment disorders, well that's just ridiculous. Yes, children who are adopted late in childhood can develop certain social disfunctions, but the time and money invested in them actually goes somewhere. They may be socially maladapted, but they can still go through the higher education system and benefit society."
I have various psychological problems similar to attachment disorder. I'd gladly turn back time to make it that I didn't go through all the misery I've gone through causing, and caused by, those psychological problems. But if I could go back in time and make it that I was not autistic, I would refuse. Even if I was lower functioning than I am. Because I believe that my happiness matters more than society's measure of how much I contribute.
"I do not imply that non-functional children are a detriment to society; I only point out that functional children contribute more."
Yes, you aren't implying that. You are explicitly saying that. You say that disabled people are "basically a cash sink". You measure only one way of contributing and say that normal people contribute more. Well, there are other ways of contributing.
Ettina