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Doctor playing Eugenics - January 22nd 2012, 01:06 AM

http://healthland.time.com/2012/01/1...me-one-doctor/

The parents of a 3-year-old New Jersey girl who claim she’s being denied a kidney transplant because of her mental disabilities said their problems may be with one doctor, and not The Children’s Hospital of Philadelphia.

“It’s one doctor who’s never seen us who is making this call,” Joe Rivera told The Associated Press on Wednesday. “We’ve had a great experience with CHOP. We’re not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation.”

Rivera, 39, and his wife Chrissy plan to meet with hospital officials next week, amid a growing online furor that has experts warning the situation may be much more complex than many realize. The hospital has not commented on the child’s case, citing patient confidentiality laws, but acknowledged the online discussion and said on its Facebook page that “we hear your concerns.”

Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children’s Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year.

Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition.

“I put my hand up. ‘Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?’” she wrote. “I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”

Joe Rivera said he was left thunderstruck.

“It just felt like that you were punched in the gut,” he told the AP. “It was mind blowing how people think these days.”

But he said that the experience was not necessarily indicative of the treatment they’ve gotten from the hospital.


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Re: Doctor playing Eugenics - January 22nd 2012, 03:47 AM

It is very tragic the young girl is suffering from Wolf-Hirschhorn Syndrome, however, there is more to why she was denied a kidney transplant than mental retardation. WHS frequently involves "grand-mal" seizures that are quite difficult to treat with pharmaceutical intervention. In addition, the immune system quite weakened, congential heart disease, physical malformations and neurological abnormalities that can result in a wide variety of impairments from mental retardation to death. I don't know why the parents are focusing exclusively on mental retardation when it's clear that the doctor stated, "... quality of life and mental retardation". Later in the article, the parents become very defensive about the doctor commenting on their daughter's quality of life as though it were an insult when in fact it is not.

Due to the daughter's genetic disorder, she will need more resources in the future, such as heart transplant. Unfortunately, studies indicate individuals with this genetic disorder do not have a long life expectancy and given her mental retardation, immunosuppressant medication (for organ transplant), I question how much she can learn from the world. She's going to need more resources and child organs are in short supply. For example, according to an epidemiological study by Shannon, Maltby, Rigby and Quarrell (2001), there is a high morality rate in the first 2 years of life. The girl is three years old, so although she has overcome the 2 year mark, there are very few who survive past 10 years old let alone 20 years old. I understand the doctor's decision and support it because the child will need additional resources that are not in abundance.
http://www.ncbi.nlm.nih.gov/pmc/arti...v038p00674.pdf


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Re: Doctor playing Eugenics - January 22nd 2012, 12:53 PM

Resources, whatever resources they are, should generally be rewarded where they offer the most benefit and are most effective. Like XX Master said above me... if there are large chances she's going to die at 10 years old, or 20 years old, then it's almost a waste of a kidney compared to another person who might live another 40 years or more.

It's not something I'm "happy" about... but if there's a choice between giving this 3 year old a kidney, and giving another person a kidney who's going to live a full, productive, and hopefully happy life... then it only makes sense to give it to someone where it'l reap the most benefits for everyone.

If there was an abundance of kidneys, then there'd be no problem, and she should get one. It would be a real problem in my opinion if she was denied a kidney, despite there being plenty of them to go round for everybody.


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Re: Doctor playing Eugenics - January 22nd 2012, 02:10 PM

Irrespective of the concerns regarding quality of life, which may have merit (although I would argue we know far too little about her actual prognosis to comment), the notion that her mental condition should even have been considered as a criterion for transplant is beyond the pale. That should not even enter into the equation, frankly, and on that basis I'm not surprised they reacted as they did. On that basis, I find myself questioning why the doctor raised it in the first place and it does leave a fair amount of explaining to be done.


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Re: Doctor playing Eugenics - January 23rd 2012, 07:06 AM

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Irrespective of the concerns regarding quality of life, which may have merit (although I would argue we know far too little about her actual prognosis to comment), the notion that her mental condition should even have been considered as a criterion for transplant is beyond the pale. That should not even enter into the equation, frankly, and on that basis I'm not surprised they reacted as they did. On that basis, I find myself questioning why the doctor raised it in the first place and it does leave a fair amount of explaining to be done.
Individuals with Wolf-Hirschhorn Syndrome often have a significantly reduced head size, which no doubt causes neural impairment. As a result, various physiological impairments can occur, such as affecting the cardiac system and intellect causing mental retardation. Thus, her mental condition is a product of her physiological disorder. I will say the doctor commented quite a fair bit on her mental condition as though it stemmed from a separate etiology. I cant explain why he/she did that, I think if it were explained in a similar manner that I provided in this post by explaining her neurological symptoms and likely cardiovascular impairments will result in more resource investment, which unfortunately has to be conserved for those who can benefit the most, the parents may be more understand but still distraught. In all fairness though, her mental retardation is not nearly as detrimental as the physiological impairments that commonly occur from this disorder that prove to be fatal, so I do think the focus in the doctor's response was not properly oriented.


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Re: Doctor playing Eugenics - January 23rd 2012, 07:41 AM

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It's not something I'm "happy" about... but if there's a choice between giving this 3 year old a kidney, and giving another person a kidney who's going to live a full, productive, and hopefully happy life... then it only makes sense to give it to someone where it'l reap the most benefits for everyone.
But your argument is based entirely on assumptions. Firstly, you are assuming that this girl won't live as long as whoever does get a kidney. Without being able to see the future, we can't know that. We can't know that the child who does get the kidney won't be hit by a car the very next day.
Secondly, we can't know that the child who does get the kidney will have a happier or "better" life than this girl. In fact, I would argue that they probably won't. Living until only 10 or 20 means that this girl won't face a lot of the unhappiness and stress that people who live for longer do and since she'll know that she won't live long, she will probably focus on being happy.
And thirdly, we don't know that another child getting this kidney would be more beneficial for everyone. The child who does get this kidney could grow up to be a horrible person, a criminal, anything. Or this girl could make a positive difference in a lot of people's lives.


Basically, I don't understand why the donation shouldn't be run on a first-come, first-serve basis. I can understand not giving a liver to someone with an alcohol addiction, but I don't think that this is the same. I do not feel that giving a kidney to such a young girl could ever be a waste even if she won't have a normal lifespan.



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Re: Doctor playing Eugenics - January 23rd 2012, 09:49 AM

Personally, it's a simple matter of who will contribute more to the fabric of society and the advancement of the human race.

I see it as black and white really.

Sorry in advance to those who this thinking pisses off, but it's how I feel.

I'm a Rawlsian Utilitarian. :/


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Re: Doctor playing Eugenics - January 23rd 2012, 11:27 AM

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Originally Posted by The Man And XX Master View Post
It is very tragic the young girl is suffering from Wolf-Hirschhorn Syndrome, however, there is more to why she was denied a kidney transplant than mental retardation. WHS frequently involves "grand-mal" seizures that are quite difficult to treat with pharmaceutical intervention. In addition, the immune system quite weakened, congential heart disease, physical malformations and neurological abnormalities that can result in a wide variety of impairments from mental retardation to death. I don't know why the parents are focusing exclusively on mental retardation when it's clear that the doctor stated, "... quality of life and mental retardation". Later in the article, the parents become very defensive about the doctor commenting on their daughter's quality of life as though it were an insult when in fact it is not.

Due to the daughter's genetic disorder, she will need more resources in the future, such as heart transplant. Unfortunately, studies indicate individuals with this genetic disorder do not have a long life expectancy and given her mental retardation, immunosuppressant medication (for organ transplant), I question how much she can learn from the world. She's going to need more resources and child organs are in short supply. For example, according to an epidemiological study by Shannon, Maltby, Rigby and Quarrell (2001), there is a high morality rate in the first 2 years of life. The girl is three years old, so although she has overcome the 2 year mark, there are very few who survive past 10 years old let alone 20 years old. I understand the doctor's decision and support it because the child will need additional resources that are not in abundance.
http://www.ncbi.nlm.nih.gov/pmc/arti...v038p00674.pdf
Pretty much this.


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Re: Doctor playing Eugenics - January 23rd 2012, 03:16 PM

I like how you only posted part of the article, the part that shows how "horrible" the doctor is for making this decision, and decided to leave out the part that the child has a weakened immune system, and/or heart disease, major contributing factors of whether or not any patient receives a transplant. I like how you also left out the part of the article that explains how rare extra organs are for children, whether they're mentally challenged or not.

If anyone is to blame here, it should be Zack over here who only posted part of the article, leading many people to believe they read it all via his post.

Guys, before you make a decision of whether or not you think this girl should have a transplant, please, for the love of God, actually read the whole article. Then decide for yourself, unbiased by Zack's obvious point of view.


I mean this post with no offense to the OP, and I'm sorry if it comes across as harsh. It just bugs me when someone here posts part of the news article, leading people to believe false and/or incomplete information.



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Re: Doctor playing Eugenics - January 23rd 2012, 04:20 PM

Quote:
Originally Posted by The Man And XX Master View Post
Individuals with Wolf-Hirschhorn Syndrome often have a significantly reduced head size, which no doubt causes neural impairment. As a result, various physiological impairments can occur, such as affecting the cardiac system and intellect causing mental retardation. Thus, her mental condition is a product of her physiological disorder. I will say the doctor commented quite a fair bit on her mental condition as though it stemmed from a separate etiology. I cant explain why he/she did that, I think if it were explained in a similar manner that I provided in this post by explaining her neurological symptoms and likely cardiovascular impairments will result in more resource investment, which unfortunately has to be conserved for those who can benefit the most, the parents may be more understand but still distraught. In all fairness though, her mental retardation is not nearly as detrimental as the physiological impairments that commonly occur from this disorder that prove to be fatal, so I do think the focus in the doctor's response was not properly oriented.
Agreed - I take no issue with the quality of life argument (my only remark on it being that there isn't enough information to comment either way). I'm just baffled as to why mental condition was deemed a criterion at all, given that as you say it's the physiological conditions which are more significant. It just smacks of ulterior motive somewhat, and that is cause for concern. It may well have been an honest error of judgement - doctors are human, after all - but as things stand it doesn't look the best.


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Re: Doctor playing Eugenics - January 23rd 2012, 04:30 PM

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Originally Posted by ShimmeringFaerie View Post


But your argument is based entirely on assumptions. Firstly, you are assuming that this girl won't live as long as whoever does get a kidney. Without being able to see the future, we can't know that. We can't know that the child who does get the kidney won't be hit by a car the very next day.
If I throw a rock in the air, there is a 99.9999% chance it will come back to Earth, unless I one morning wake up to be superman, and throw the rock into orbit instead. Yes, life is based on assumptions of the future, otherwise how the hell can we make any rational choices? We evaluate the possible outcomes of different options the best that we can, and make a choice. One girl has a very high chance of dying prematurely, whereas another might not.

In your example, both kids stand an almost equal chance of being hit by a car the next day. It's a null point. It cancels itself out, whether it be car accident, meteor strike, tsunami, or spontaneous combustion.


Quote:
Originally Posted by ShimmeringFaerie View Post
Secondly, we can't know that the child who does get the kidney will have a happier or "better" life than this girl. In fact, I would argue that they probably won't. Living until only 10 or 20 means that this girl won't face a lot of the unhappiness and stress that people who live for longer do and since she'll know that she won't live long, she will probably focus on being happy.
I don't even know where or how to start arguing that. It appears you have a pessimistic outlook on life, fine, so do I to a large extent... but ultimately life is whatever you make of it. Suggesting that people would have better lives if they died early... is just ridiculous. Why don't we all kill ourselves at birth to spare ourselves the pain? I'm not even religious or anything, but Jesus Christ...

Quote:
Originally Posted by ShimmeringFaerie View Post
And thirdly, we don't know that another child getting this kidney would be more beneficial for everyone. The child who does get this kidney could grow up to be a horrible person, a criminal, anything. Or this girl could make a positive difference in a lot of people's lives. [/color]
Again this is a null point, it goes both ways and so cancels out. Either of the kids could turn out to be anything, it purely depends on their upbringing, and to some extent genetics, but the genetics business is a grey area regarding whether or not someone will be "good" or "bad".


I don't like being as rude as I probably sound here, but none of your reasoning makes any sense. I found it difficult to even take your post seriously enough to even bother phrasing my own arguments coherently, so I'm sorry if I don't come across clearly. To be honest I face-palmed at some of the things I read in your post.


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Re: Doctor playing Eugenics - January 23rd 2012, 08:09 PM

Quote:
Originally Posted by BDF View Post
If I throw a rock in the air, there is a 99.9999% chance it will come back to Earth, unless I one morning wake up to be superman, and throw the rock into orbit instead. Yes, life is based on assumptions of the future, otherwise how the hell can we make any rational choices? We evaluate the possible outcomes of different options the best that we can, and make a choice. One girl has a very high chance of dying prematurely, whereas another might not.

In your example, both kids stand an almost equal chance of being hit by a car the next day. It's a null point. It cancels itself out, whether it be car accident, meteor strike, tsunami, or spontaneous combustion.




I don't even know where or how to start arguing that. It appears you have a pessimistic outlook on life, fine, so do I to a large extent... but ultimately life is whatever you make of it. Suggesting that people would have better lives if they died early... is just ridiculous. Why don't we all kill ourselves at birth to spare ourselves the pain? I'm not even religious or anything, but Jesus Christ...



Again this is a null point, it goes both ways and so cancels out. Either of the kids could turn out to be anything, it purely depends on their upbringing, and to some extent genetics, but the genetics business is a grey area regarding whether or not someone will be "good" or "bad".


I don't like being as rude as I probably sound here, but none of your reasoning makes any sense. I found it difficult to even take your post seriously enough to even bother phrasing my own arguments coherently, so I'm sorry if I don't come across clearly. To be honest I face-palmed at some of the things I read in your post.
Alright, I'll make my argument more simple:

You said that the person who would get this kidney would live a full, productive, and hopefully happy life and that giving them a kidney would reap the most benefits for everyone.

And my point is that you have nothing to base that argument on. You cannot know any of that. You can't even predict that since you don't know which child will get the kidney. And sure, I don't know that this girl would have a longer, better life if she got the kidney. But I don't see why your assumptions are apparently reasonable and my potential assumptions are automatically null.

I'm not pessimistic. Which is why I don't think I could ever argue for a doctor refusing to put a child on the transplant list at all. Maybe putting her further down the list than an otherwise healthy child (though I can't think of many situations where a "healthy" child would need a tranplant). But to not put her on at all isn't right in my opinion.



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Re: Doctor playing Eugenics - January 23rd 2012, 08:17 PM

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Agreed - I take no issue with the quality of life argument (my only remark on it being that there isn't enough information to comment either way). I'm just baffled as to why mental condition was deemed a criterion at all, given that as you say it's the physiological conditions which are more significant. It just smacks of ulterior motive somewhat, and that is cause for concern. It may well have been an honest error of judgement - doctors are human, after all - but as things stand it doesn't look the best.
I can understand why the mental condition would be included for other disorders, such as Lesch-Nyhan Syndrome where one of the common symptoms is cognitive impairment that results in frequent and severe self-mutilation to any part of their body, even if they do not have a mood disorder. However, for the girl in question, I understand the doctor's position if there was evidence she harmed her body and internal organs. If there was no such evidence, then I lean more toward the side of an ulterior motive because it's one thing to emphasize her mental condition in only part of the response but to mention in throughout suggests there is a reason that is kept hidden.

Quote:
Originally Posted by ShimmeringFaerie

Firstly, you are assuming that this girl won't live as long as whoever does get a kidney. Without being able to see the future, we can't know that. We can't know that the child who does get the kidney won't be hit by a car the very next day.
The decision panel usually is composed of medical doctors so their decisions and assumptions focus is physiological and medical. If they were to nitpick over potential risks, such as death by a natural disaster, drunk driver, suicide, and every single other possible risk known to human kind, they would get nowhere. Hell, even if there was no decision panel and it was on a first-come first-serve basis, your nitpicking would still leave people thinking they didn't benefit at all from the organ transplant, after all, when their parents are driving them home on the high-way, a kangaroo could hop in the middle of the highway causing them to serve to avoid collision, resulting in the car going airborne and land in the middle of a gun fight between rival gangs.

Quote:
Originally Posted by ShimmeringFaerie
But your argument is based entirely on assumptions.
...
Secondly, we can't know that the child who does get the kidney will have a happier or "better" life than this girl. In fact, I would argue that they probably won't. Living until only 10 or 20 means that this girl won't face a lot of the unhappiness and stress that people who live for longer do and since she'll know that she won't live long, she will probably focus on being happy.
You're a hypocrite. You accused BDF of making unfounded assumptions yet you just made one of your own. For all you know, the girl may feel her life is hopeless and cannot see any positive light but you suggested this is less likely to occur based on your assumption. I'm sure individuals of all ages who are facing terminal illnesses would love to hear your warped view when you state they should be happy because their life is coming to a very quick and abrupt end.

Quote:
Originally Posted by ShimmeringFaerie
And thirdly, we don't know that another child getting this kidney would be more beneficial for everyone. The child who does get this kidney could grow up to be a horrible person, a criminal, anything. Or this girl could make a positive difference in a lot of people's lives.
True, the child could do something amazing, however, that is when it is important to look at their symptoms, disorder, medical history, etc... . The fact she is mentally retarded rules out the possibility of her making a landmark discovery. She could still make a positive difference but this is equivalent to saying the world is such a dangerous place, people can die by any means so they should stay indoors and away from all dangers. Same premise: everything is possible. You're being overly optimistic.

Quote:
Originally Posted by ShimmeringFaerie
Basically, I don't understand why the donation shouldn't be run on a first-come, first-serve basis. I can understand not giving a liver to someone with an alcohol addiction, but I don't think that this is the same. I do not feel that giving a kidney to such a young girl could ever be a waste even if she won't have a normal lifespan.
I don't think there's a single doctor, let alone any human being who wouldn't wish there was a large enough supply of organs so donations were on a first-come, first-serve basis. However, since the supply is heavily restricted, there are two options: first-come first-serve or use a decision panel. You supported a decision panel when you wrote a liver should not be donated to someone with an alcohol addiction because they will not benefit as much and would in all likelihood need another liver transplant down the road unless they overcome their addiction. The fact you give support to using a decision panel tarnishes any argument you have against it.


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Re: Doctor playing Eugenics - January 23rd 2012, 10:33 PM

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I like how you only posted part of the article, the part that shows how "horrible" the doctor is for making this decision, and decided to leave out the part that the child has a weakened immune system, and/or heart disease, major contributing factors of whether or not any patient receives a transplant. I like how you also left out the part of the article that explains how rare extra organs are for children, whether they're mentally challenged or not.

If anyone is to blame here, it should be Zack over here who only posted part of the article, leading many people to believe they read it all via his post.

Guys, before you make a decision of whether or not you think this girl should have a transplant, please, for the love of God, actually read the whole article. Then decide for yourself, unbiased by Zack's obvious point of view.


I mean this post with no offense to the OP, and I'm sorry if it comes across as harsh. It just bugs me when someone here posts part of the news article, leading people to believe false and/or incomplete information.


Please keep Nazi Idology to yourself and not this topic.


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Re: Doctor playing Eugenics - January 24th 2012, 01:30 AM

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Originally Posted by ✖Truth✖ View Post
Please keep Nazi Idology to yourself and not this topic.
Today I learned that Nazis support everyone receiving all the information possible about a certain topic. Learn something new every day.



Take me seriously.
I dare you.



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Re: Doctor playing Eugenics - January 24th 2012, 12:50 PM

Quote:
Originally Posted by ShimmeringFaerie View Post
Alright, I'll make my argument more simple:

You said that the person who would get this kidney would live a full, productive, and hopefully happy life and that giving them a kidney would reap the most benefits for everyone.

And my point is that you have nothing to base that argument on. You cannot know any of that. You can't even predict that since you don't know which child will get the kidney. And sure, I don't know that this girl would have a longer, better life if she got the kidney. But I don't see why your assumptions are apparently reasonable and my potential assumptions are automatically null.

I'm not pessimistic. Which is why I don't think I could ever argue for a doctor refusing to put a child on the transplant list at all. Maybe putting her further down the list than an otherwise healthy child (though I can't think of many situations where a "healthy" child would need a tranplant). But to not put her on at all isn't right in my opinion.
And what makes some assumptions more reasonable than others, is what facts they're based on, if any at all. This girl is sick with Wolf-Hirschhorn Syndrome... FACT. It's almost certain she won't live anywhere near as long as me, you, most people on this planet. Sure... I may be sitting in my room in the UK, at risk of getting hit by a stray bullet from a war in the Middle East. Same risk goes for everyone, even it's small. Same risk that they might die of a car accident... I've been over this. But I, along with the 99.99% of people have very low risk of dying of Wolf-Hirschhorn Syndrome, because we don't have it.


And wtf is this bullshit about Nazi ideologies in the few comments above me?? Whaaaat... http://www.youtube.com/watch?v=4d_FvgQ1csE


"I don't care about politics"
Then politics doesn't care about you either. Truth. You've got to make your voice heard, if you want to be listened to. But that's too logical for some people, so let me go a step further. Not making your voice heard, leaves other people free to hijack it by speaking on your behalf, even if they don't actually give a shit about you. That's politics. So, make your voice heard. That's not a quote from anywhere. That's just me.


   
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Re: Doctor playing Eugenics - January 24th 2012, 06:57 PM

Ladies and gentlemen, I give you Godwin's Law in action...


"The greatest glory in living lies not in never falling, but in rising every time we fall." - Nelson Mandela, Long Walk to Freedom

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Quote:
Originally Posted by OMFG!You'reActuallySmart! View Post
If you're referring to dr2005's response, it's not complex, however, he has a way with words .
RIP Nick
   
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Re: Doctor playing Eugenics - January 27th 2012, 11:36 AM

This kind of thread makes me wonder where Guile is these days.


One million miles away...
   
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Re: Doctor playing Eugenics - January 27th 2012, 05:16 PM

Quote:
Originally Posted by ~Mr. Self Destruct~ View Post
This kind of thread makes me wonder where Guile is these days.
lol me too


"I don't care about politics"
Then politics doesn't care about you either. Truth. You've got to make your voice heard, if you want to be listened to. But that's too logical for some people, so let me go a step further. Not making your voice heard, leaves other people free to hijack it by speaking on your behalf, even if they don't actually give a shit about you. That's politics. So, make your voice heard. That's not a quote from anywhere. That's just me.


   
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Re: Doctor playing Eugenics - January 29th 2012, 05:25 PM

It's okay. I'm the new Guile, I'm a nazi apparently.



Take me seriously.
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Re: Doctor playing Eugenics - January 29th 2012, 07:37 PM

Whenever I get close to almost missing the guy he shows up again, says something wildly offensive and runs off without even a "hello".

:/

If TheBabyEater's post was Neo-Nazi then hand me a flag with a Swastika on it.

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