Tuesday, January 6, 2009

ASAN Recommedations to Obama Transition Team

This announcement is from Ari Ne'eman, president of the Autistic Self-Advocacy Network:
Hello,

This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration
on our website and we encourage you to post them on your blogs, listservs and elsewhere.

Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.

Nothing About Us, Without Us!
Regards, Ari Ne'emanPresidentThe Autistic Self Advocacy Network1660 L Street, NW, Suite 700Washington, DC 20036
http://www.autisticadvocacy.org732.763.5530

Details of ASAN's recommendations can be found here.

Here is a brief excerpt:

Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for an effective education across the lifespan.

ASAN goes on to suggest that no less than a third of federal funding for autism research be allocated to services-based research.

The inclusion of ASAN in this discussion represents a big step in the right direction. A common myth about neurodiversity is that autistic self-advocates who support ideas like acceptance would prefer to see an end to autism research. That isn't the case. It's about resources. While huge sums of money are poured into finding the cause of autism, there are many autistic people who might benefit from services that money could buy. There are autistic adults who need help with employment, education, transportation, activities of daily living. Autistic children need Free and Appropriate Public Education. Adults and children on the spectrum need access to Augmentative and Alternative Communication devices. All of us need the opportunity to be fully included in the communities we live in. All of us need doctors and police officers who are properly educated about autism.

None of these needs are addressed by "Walk for Autism" events or public service announcements decrying the "horrors" of autism. But they are addressed realistically through the inclusion of autistic adults in formulating policy.

This is truly a hopeful start to the New Year.

17 comments:

  1. :)Thank you for posting some good news. What with everything that's going in the world, good news is more precious than usual.

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  2. I think it is chilling that the Obama transition team is taking ideas from the ASAN about policy. I hope the transition team doesn't actually consider the recommendations in a way that would influence policy. The transition team should not have invited such a fringe group like ASAN to express their ideas, and I wonder if the transition team has been mislead into listening to them by the abstract and benevolent yet deceitful rhetoric spewed by entities like ASAN. I hope such backward nonsense doesn't become part of this upcoming administration, which is supposed to be so progressive and has been looked forward to by many for hope.

    Ari Ne'eman, and the other non-disabled high-functioning autistics of ASAN, should have no business telling the government what autism research policy should be. They as members of a high- functioning elite, a small percentage of those on the spectrum, don't represent the interests of the hugely disabled majority of people on the spectrum. Their recommendations don't leave any doubt that they aren't advocating in the interests of the low-functioning.

    What a bunch of deceptive hogwash that "they don't oppose autism research", when they only advocate research into services and education. What kind of research needs to be done about services? I've never heard of such a thing. Why not just spend money on providing services? How many gains can be achieved in researching effective education, when the mental disability involved in many cases of autism many times basically precludes essential forms of learning? How much is "augmentative communication" going to do, keeping in mind that facilitated communication has been debunked and doesn't work for that many autistics?

    Why not go to the root of the problems involved and just cure the disability prevalent in autism, which would bring independence?

    Ari Ne'eman doesn't have to worry about going without basic abilities, so I don't wonder why he wouldn't care about a lack of funding of cure research. I'd like to know how the ASAN gets its consent from the low-functioning majority, to represent them to policy makers in implying that cure isn't a priority or even desirable. Such consent does not exist. Sounds to me like another instance in which a privileged elite tries to control a deprived majority.

    Even though guarantees in the provision of services and education need to be secured, those priorities aren't the ultimate goal. And those needs can also be advocated for by those who do care about the ultimate goal, which is to cure the disability prevalent in autism.

    I hate these so called "advocates" pretending the great goal is to provide services. How can they talk about "full inclusion in communities" as a possibility, when their actions will only permanently leave many of those on the spectrum as dependents on the welfare state for services that provide for basic activities and needs? What kind of inclusion is that and who benefits from it?

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  3. I suggest you read this post.
    http://aspergersquare8.blogspot.com/2008/03/i-am-joes-functioning-label.html
    Autistics who can speak still go without "basic abilities" like eye contact and bladder control. But focussing on what people can't do whether or not they can speak, is always ging to be less helpful than using the things they CAN do to find ways around these problems.
    ASAN does get support from people with the LFA label, notably Amanda Baggs and Donna Williams.

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  4. That's awesome :)), ASAN ftw!

    And I was going to point out some fallacies in lurker's comment, but.... there's too many of them so I gave up. You need to educate yourself.

    "the low functioning minority", what low functioning minority?
    Now don't waste your time trying to find evidence that most autistics are so-called "low functioning", cause you won't find any.

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  5. Lurker,

    I am sorry you got the impression from this post that ASAN only advocates "research into services." Please read the link provided to see the details of what is supported.

    ASAN was not the only group invited to this meeting, as stated in Ari's letter. Have no fear: groups representing views closer to your own were represented. However, this is the first time a group holding beliefs similar to mine has been included in policy planning at this level. This is the first time autistic people (whether or not you approve of them and their ideas) have been invited to take part in policymaking at this level.

    AAC is a much broader concept than FC, and has benefitted many people who communicate in atypical ways.

    There are a lot of people working to "just cure" autism. What that means seems quite variable, and I have no idea what it means when you use the term. In the world we live in today, there is no way to turn an autistic person into a non-autistic person. This is the reality we deal with, and people who are marginalized due to autism (and/or society's perceptions of autism) need services. This includes those you term "high-functioning" as well as those you call "low-functioning." Different people require different services, and ASAN works to support the needs of all autistics.

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  6. lurker,

    you are obviously too high-functioning to have valid opinions.

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  7. sana, I've already read that evasive post. Just because it isn't always easy to assign functioning labels based on whether one speaks or not, and when there are occasional unusual sets of abilities and incapabilities, doesn't change the reality.

    Who could deny the tremendous gap in ability between the low-functioning the the very high-functioning? Who couldn't recognize the disparities involved when many on the spectrum can't read, write, perform in school, do basic self care tasks, and have to depend on others for care and money, while a few others on the spectrum lack no basic skills, can speak articulately and eloquently, interact with people sufficiently, do fantastic in school, and get complicated jobs?

    And a little amount of ability to speak isn't enough to be satisfied. There's no reason not to focus on what one can't do, since lack of abilities have consequences. Nobody should have to settle for a small amount of abilities when others have so many, and what one can do can't stop the problems of lacking important abilities. I'm sick of this "be happy with what you have" crap.

    Amanda Baggs doesn't count as a solution to the question of low-functioning needs. She is one person, and I don't want to get into her issues, but she doesn't have a background of experiences that come from low-functioning. Donna Williams isn't LFA, and I won't ignore her questionable reputation. I'm tired of Amanda Baggs being used to try to resolve the issue of LFA.

    Anon, I said low-functioning MAJORITY, which isn't deniable. How dare you pretend LFA doesn't make up a majority of the spectrum. I'm sick of people like you who dismiss evidence and basic facts that you don't want exposed, and act all snooty about it. Who do you think you can fool?

    Bev, oh I read the link and was astounded about what recommendations I saw: At least half of all federal autism research funds to go to "services research". At least a third of federal autism research agenda for the "needs of adults on the autism spectrum". Research into augmentative and alternative communication. I saw no recommendations for research into causes and treatment to cure the disability that comes with autism. But I saw more recommendations to involve "autistic self-advocates" and such organizations in research decision making, who very likely will bring along other people like Ne'eman.

    I hope at least one of the other groups represented at the meeting with the intentions of cure will have an effective influence. I think it would be great if there were a proportional amount of LFAs involved in autistic representation in policy making, rather than just the few very HFAs there are now as representatives.

    Those seeking to devise a cure need lots of funding, and the money allocated towards research shouldn't be squandered. I talk about cure as meaning to get rid of all the disabilities that most with autism have, so the recipients of cure will not go without basic abilities. I don't get how someone wouldn't be sure what cure is meant to be.

    Evonne, why not try to actually refute something I said instead of just using ridiculous attacks?

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  8. Lurker:

    I am not sure exactly why you prefer the opinions of non-autistic individuals over the opinions of autistic ones in this matter. The high-functioning autistics still must know more about autism than the non-autistics, true? Yet, you react strongly at government officals recognizing autistics as experts on autism. Why must you speak for us?

    I am also interested as to why you do not support more services for autistics. You would prefer the autistics to be made non-autistics. Most autistics do not share this view. Most doubt that a cure for autism can be found. Many have tried, and all that has been done is physical and emotional damage to autistics. There are many services that can be done to help autistics, to help those who cannot speak communicate in other ways, but instead you prefer to leave the autistic who cannot speak in silence, while you wonder WHY he cannot speak, and how you can MAKE him speak, when he doesn't NEED to speak.

    I am confident a cure for autism does not exist. Many have tried to find it, all have failed. Any money spent on a cure is a waste of money.

    I advise you get your facts straight. Autistics do not want to sit around and suffer while you go on one scientific trip after another searching for a mysterious cure.

    Thank you for saying our opinions don't count.

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  9. ASpieboy, you need to be clued in on what I hope for. One with autism likely knows more about autism than a non-autistic, but that doesn't necessarily make someone with autism an expert. But aside from that, it doesn't really take an expert to understand what needs to be done for those on the spectrum.

    I don't necessarily prefer the opinions of non-autistics over autistics about this matter. I prefer the opinions of those who look out for what is in the best interests of the disabled people on the spectrum, over the opinions of those who don't care about those interests. There are also autistics who don't hold the anti-cure opinions of the autistic self-advocates who are currently involved in attempting to influence policy. I want there to be low-functioning people on the spectrum telling the policy makers what they want.

    I didn't oppose more services for autistics. Of course there should be more. But that isn't the ultimate goal. That isn't the only goal. I feel it is disingenuous when someone pushes for services while they oppose cure, in order to make themselves seem more favorable as they try to distract people away from the goal of cure.

    I have no intention to make autistics into non-autistics. If all autistics were as high functioning as Ari Ne'eman and the others at ASAN, cure wouldn't be necessary as there wouldn't be anything to cure, and it wouldn't be an issue. I don't care if an autistic is still considered autistic after a cure is administered. What I want is for the mentally disabled on the spectrum to be made non-disabled and independent. I want the abilities of the high-functioning on the spectrum to be spread to the low-functioning.

    Prove to me that most autistics think a cure can't be found. Stop lying that there is physical and emotional damage done in pursuit of cure. Tell me how alternative communication will help many autistics communicate? I would like that to happen but a way to do that hasn't been provided or implemented. Facilitated communication doesn't work for all non-verbal autistics, considering that many autistics are language impaired.

    Alternative communication isn't an ultimate solution. It doesn't seem realistic, but it should be used to help those on the spectrum who can benefit from it communicate for now. I think it is necessary, especially now, for LFA to have a way to communicate their wants and needs and take control of their futures. I think everybody deserves the ability to speak and that it's unfair that some don't have that ability.

    I'm convinced that some helpful therapies have come about that can help some on the spectrum, and that therapies that can affect cure for many on the spectrum will be on the way by refining and enhancing existing therapies and devising other therapies. But considering that this will require lots of extra knowledge through research, and therefore money, I think it would be oppressive to appropriate money away from the research into cure.

    There should be enough money out there to fund both cure research and services. Opposing cure research using the fact that services are needed as an excuse, isn't a genuine effort. Where do you get the impression that the low-functioning autistics are content with permanently being mentally disabled?

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  10. "Who could deny the tremendous gap in ability between the low-functioning the the very high-functioning? Who couldn't recognize the disparities involved when many on the spectrum can't read, write, perform in school, do basic self care tasks, and have to depend on others for care and money, while a few others on the spectrum lack no basic skills, can speak articulately and eloquently, interact with people sufficiently, do fantastic in school, and get complicated jobs?"

    Here are the words of a quadruplegic woman who has a job and frends and lots of things people think a quad couldn't have:

    "What causes the suffering from disability is the lack of resources that lead to isolation. It's not the disability itself. Most people with disabilities who I've met are full of joy and life. I know we've all met able bodied people who are not that way and I warrant you that tinkering with humans and eliminating disability won't fix that.

    The dignity of each human being as we're created is something I believe in as a Catholic. As a person with a disability, I can bear witness to you that the fears that feed eugenics and genetic engineering as a "fix-all" of the human race are misfounded.

    By denying segments of our society the resources they need to function we have already "selectively eliminated" from participation those who are visible in our society. Let's not compound this by cutting their existence off at birth."

    http://wheeliecatholic.blogspot.com/2007_07_01_archive.html

    Are you going to deny that quadruplegia is a real and serious disability? No. But because this womn has resources to help her get on with life, she is happy. The same would apply to most disabled people (autistic or otherwise) if they got what theyneeded.

    A lot of autistics who have jos and degrees and friends also have problems with very basic things.

    http://parnassus.co.uk/?p=296

    http://parnassus.co.uk/?p=92

    "Amanda Baggs doesn't count as a solution to the question of low-functioning needs. She is one person, and I don't want to get into her issues, but she doesn't have a background of experiences that come from low-functioning. Donna Williams isn't LFA, and I won't ignore her questionable reputation. I'm tired of Amanda Baggs being used to try to resolve the issue of LFA."

    First of all, one person s a lot more than no people. You have given no specific examples of non-speaking autistics who want to be cured. I'm sure there are plenty, but there are also plenty who do not want to be cured. They are harder to use as examples because they are not as famous as Amanda Baggs.

    Why don't you think Donna Williams is LFA? She clearly wasn't HFA enough for the NIH centre of excellence.

    http://www.donnawilliams.net/notintelligentenough.0.html

    "Anon, I said low-functioning MAJORITY, which isn't deniable. How dare you pretend LFA doesn't make up a majority of the spectrum. I'm sick of people like you who dismiss evidence and basic facts that you don't want exposed, and act all snooty about it. Who do you think you can fool?"

    According to the National Autistic Society, the ratio of Kanner autistics to the entire autistic spectrum is about 5:91 (this is based on studies conducted in the UK, but don't iagine there would be a huge difference between countries).

    "Stop lying that there is physical and emotional damage done in pursuit of cure."

    Is this a lie?
    http://www.msnbc.msn.com/id/9074208

    Is this a lie?
    "Children with autism have a much harder time with their self-esteem. They often perceive the constant correction of their behaviors and their social interactions as criticism. The frequent visits to doctors, or speech therapists, or OTs, the testing and the stream of interventions that we try with them can easily leave them feeling like they're under the microscope, a specimen that warrants investigation, a person who needs fixing."

    http://74.125.45.132/search?q=cache:-VjDM2XekiwJ:www.autismtoday.com/articles/buildingselfesteem.html+autism+cure+self-esteem&hl=en&ct=clnk&cd=1&gl=uk&client=firefox-a

    "Alternative communication isn't an ultimate solution. It doesn't seem realistic, but it should be used to help those on the spectrum who can benefit from it communicate for now. I think it is necessary, especially now, for LFA to have a way to communicate their wants and needs and take control of their futures. I think everybody deserves the ability to speak and that it's unfair that some don't have that ability."

    Alternative communication isn't just language-based. It includes things like PECs and makaton and teaching parents/teachers/carers to understand an autistic person's body languge.

    "Evonne, why not try to actually refute something I said instead of just using ridiculous attacks?"

    Because you've dismissed everything with abitrarily distributed functioning labels instead of facts. You dismiss people like Donna Williams because they are too high-functioning, yet if a person who has more speech ability than Donna Williams says they're unhappy to be autistic you say they are low-functioning because ti suits you.

    "I'm convinced that some helpful therapies have come about that can help some on the spectrum, and that therapies that can affect cure for many on the spectrum will be on the way by refining and enhancing existing therapies and devising other therapies."

    Teaching autistic people skills is NOT cure (and most effective therapies, such as speech and language therapy, occupational therapy, physical therapy are just that - the do't claim to bring about physiological canges in the person's brain, they teach people to move/speak/whatever with more ease, oin ways that suit their thinking style.) When I go to art classes, I am no being "cured" of not being a brilliant autistic artist like DOnnaWilliams. I am not made into an autistic person. My brain undergoes no physiological change. My mannerisms and ways of thinking are not altered. I am just learning, and learning in a way that suits me. Teaching an autistic person speech,cookery, how to dress him/herself, bladder control, how to avoid panic attacks, how to shp,how to use public transportation etc isn't curig them. It doesn't make them less obsessive and quirky. It doesn't change the grey matter/ white matter density in the autistic brain. It heps a struggling autistic person to become an autistic person who struggles less. I think that thinks like speech therapy and occupational therapy count as "services" rather than "cure". I'm not 100% certain about this, but I *think* ASAN would to.

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  11. "Prove to me that most autistics think a cure can't be found."

    I never said that. I said that I believe there is no cure, and that most autistics do not want a cure.

    I say that there is no cure because you cannot define the cure. The line between autistic and non-autistic is disputed constantly. All cures so far have only tried to encourage non-autistic behaviour over autistic behaviour. Then places like the Judge Rotenburg Center arise.

    You say that you do not wish for autistics to be made non-autistic, but that is the goal of groups like Autism Speaks. Your opinion of a successful cure is one that will allow autistics to act like non-autistics, but still be autistic. This is impossible. You cannot make autistics non-autistic when it suits you. That is why I say that no cure exists.

    But you say all you want is for lower-functioning autistics to have the same abilities as everyone else. So do I. That is best reached through directly helping autistics, not by searching for a miracle cure.

    No matter what the cure is, if it is called a cure, then we autistics suffer from a disease. Any cure will make it harder for autistics to be accepted as equals to non-autistics.

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  12. sana, Quadriplegia isn't a mental disability. Don't change the subject. Doesn't apply to mental disability.
    "A lot of autistics who have jos and degrees and friends also have problems with very basic things." That's hard for me to believe.

    "You have given no specific examples of non-speaking autistics who want to be cured" That isn't easy to provide, but I've heard of instances of autistic children getting frustrated as they try to communicate while they are unable to.

    "According to the National Autistic Society, the ratio of Kanner autistics to the entire autistic spectrum is about 5:91 (this is based on studies conducted in the UK, but don't iagine there would be a huge difference between countries)." I can't believe those statistics because of the widely varying prevalence rates claimed for aspergers, which I think are frequently claimed too high. I've seen too many fluctuations in various numbers.

    ""Children with autism have a much harder time with their self-esteem. They often perceive the constant correction of their behaviors and their social interactions as criticism. The frequent visits to doctors, or speech therapists, or OTs, the testing and the stream of interventions that we try with them can easily leave them feeling like they're under the microscope, a specimen that warrants investigation, a person who needs fixing."" So why not just do nothing with them then, and pretend there is nothing wrong and let them have any behavior they want? As if every impulse a child may have needs and requests that kind of attention. If you think being disabled is so great, why don't you go and be mentally disabled? How would you like going through all your time with mental weakness, messing up, and not being able to do things? I'm someone with mental disability, I know what it's like, and it only feels putrid for me, and makes me envious. So I hate it when such crazy rhetoric is spread around by non-disabled people, like it applies to anything.

    "Alternative communication isn't just language-based. It includes things like PECs and makaton and teaching parents/teachers/carers to understand an autistic person's body languge." Nobody should have to settle for PECs. Everyone should be entitled to ability to speaking for communication. The thought of having to be reduced to only communicating through body language or picture cards; I think that would justify the person being shortchanged that way, in using some interestingly defiant body language towards those who would confine them to that stuff on purpose.

    Those therapies you mentioned don't work for everyone on the spectrum and don't ensure that they get all the basic abilities needed. If those therapies were as strongly effective as is needed, you would not be endorsing them.


    "Your opinion of a successful cure is one that will allow autistics to act like non-autistics, but still be autistic. This is impossible. You cannot make autistics non-autistic when it suits you. That is why I say that no cure exists." ASpieboy, that's nonsense. This is about abilities, which many on the spectrum do not have. Using abilities isn't acting non-autistic. I know about you HFA/Aspies who hog up all the abilites yet you don't say that you're non-autistic for using those abilities.

    Directly helping autistics? How and in what way will that work? Think of what massive efforts that bringing abilities to LFA will involve. How do you support your idea by bashing a "miracle" cure?

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  13. "If you think being disabled is so great, why don't you go and be mentally disabled? How would you like going through all your time with mental weakness, messing up, and not being able to do things? I'm someone with mental disability, I know what it's like, and it only feels putrid for me, and makes me envious. So I hate it when such crazy rhetoric is spread around by non-disabled people, like it applies to anything."

    I AM. I am not autistic but I am neurologically disabled as the result of being deprived of oxygen at birth. I can't cross the street uaided because my depth-perception is too messed up. I'm 20 years old and have a verbal IQ in the top 0.1% of the population, but I wet the bed. I cannot tell left from right. I can't buy groceries on my own. I can't go anywhere on my own. My short-term memory is in the bottom 2% of the population. I have to have simple instructions repeated a ridiculous number of tmes.
    Stop making assumptions about my life based on nothing but your own prejudices. I have all the problems I mentioned above, but I also have my strengths. I developed those strengths as ways of living arounf my weaknesses and because of that, I am grateful for the way my brain works. But you will dismiss anyone who isn't frustrated and miserable as "not disabled enough" even thouh you can communicate well and still have decided you're more disabled than Bev and all the other people here, based on nothing exept the fact that you are unhappy with yourself. I feel sorry for you and I think you need to go for counselling or something so you can learn to accept yoursef for who you are. I have been through bullying and depression and I know what it's like to curse God for making you who and what you are (that's not unique to disabled people - ask any person from an ethnic minority.) Feelings aren't facts and there are lots of strengths you have which you can't see. If your needs were better accomodated for and you (and all disabled people) were treated with respect, you wouldn't feel this way.

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  14. sana, so I made an assumption about you. I didn't know about your disability. But I already mentioned I was disabled just before, and yet you say this to me:"even thouh you can communicate well and still have decided you're more disabled than Bev and all the other people here, based on nothing exept the fact that you are unhappy with yourself" I don't like the spin you put on things. But I have seen people on here and places like here who clearly aren't disabled, arguing the same things you do. I don't like it when someone implies that I can communicate well. A lot of times I fail in doing so, and I can't do much communicating at all away from a keyboard. I don't think it's hard for me to assume that other people here are less disabled than me considering the huge magnitude of my disability, and my lack of encountering people here who have a disability to mention. I don't want to "accept myself" for who I am. I don't like accepting that others are more adept than me. I have no shame in my envy of others. I want what I want, and I wanted to do the things I wanted to do, and to not have to look up to people. I don't want to accept my position in society. I don't want to beg others for their mercy and I don't look forward to their phony smiles and niceness towards me, as I would depend on them to make things comfortable for me. I don't think there are many people who would be content with settling for all of that.

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  15. I, for one, wouldn't want to be one of the people with the phony smiles.

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  16. Congratulations to ASAN! This really is a magnificent accomplishment.

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  17. Who would have thunk such a blog post would generate such a load of heated vitriol in the responses?

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