Genetic Disorders Hit Amish Families

[Ex-COG]

This story starts off describing the effects of genetic disorders among the Amish because of generations of inbreeding among their own small groups. At first, I felt nothing but sympathy, but the more I read, the angrier I got as I read of their responses to the crisis. Refusals to be tested for any genetic disorders before marriage. Resistance to change even when this might make life easier for the disabled among them. The shunning by friends and family of one woman who obtains modern equipment to care for her three disabled children. The unwillingness to stop intermarriage. Grrrrrr....

 

Genetic Disorders Hit Amish Hard

Centuries Of Intermarriage Make Rare Diseases More Likely

 

It doesn’t get much more peaceful than the simple life among the Amish in rural Ohio. They have no cars, no electricity, no televisions.

 

But their children have medical conditions so rare, doctors don’t have names for them yet, reports correspondent Vicki Mabrey.

 

The Amish make up only about 10 percent of the population in Geagua County in Ohio, but they’re half of the special needs cases. Three of the five Miller children, for example, have a mysterious crippling disease that has no name and no known cure.

 

The three Byler sisters were all born with a condition that has no cure and mysteriously leads to severe mental retardation and a host of physical problems. Last year, doctors figured out the girls have the gene for something called Cohen Syndrome; there are only 100 known cases worldwide.

 

Since then, more than a dozen other cases of Cohen’s have been discovered in Ohio Amish country.

 

“Nobody knew it was around here and we found, what, 20 to 30 cases in this area now that they didn't realize. Nobody knew about it," says Erwin Kuhns.

 

But for so many years, the Amish have had no names for these disorders. It was simply a mystery why half the headstones in Amish cemeteries were headstones of children.

Read the full two-page story from CBS.

[Dave]

 

The depth of the stupidity of some humans never ceases to amaze me.

[R. S. Martin]

I have very mixed feelings about such issues. I have no idea what to do about it or what feelings are appropriate. I know the feelings on both sides of the issue. Keeping the faith, keeping the traditions--nothing is of more value to them than this. Some time ago I was commended for not being angry at what has been done to me; that person thinks some of my multiple disabilities may be due to inbreeding, too. But who would I be if I weren't who I am?

 

I spent much time and energy getting to know who I am and I am comfortable with who I am. I find it disconcerting to consider that I should by rights be someone else, and have a different set of parents--all for the sake of better health. On the other hand, can it be ethically correct bringing large families of children into the world who are going to need lifelong assistence because of defects caused by inbreeding?

 

Or, as another alternative, is it right to force these people to mate with outsiders against their conscience for the sake of better health? The best solution I can think of is to enforce China's quota on family size. That would at least reduce the number of problems if not the percentage. But they would find a way around it; they would see this as meddling with God's will and they would not stand for it.

[HuaiDan]

Hey now, we we all willing to go through great unnecessary pain and self sacrifice when we were believers, right? And in their culture it's much more pervasive. To them religion is more of a way of life than a sunday supplement.

 

 

Ok, now that I've been all Mr. Culturally Aware nice guy, it's time to get rid of religion. For the innocent children's sake, anti-theism is the way. The hideously crippled children didn't get a chance to say live and let live, did they?

[Fweethawt]

I work for a place where they have a little gathering once a year for people who wish to donate money to United Way. For the longest time, the Amish (about 80% of our workforce here) wouldn't donate a dime to United Way.

 

That is, until United Way "recognized" that there was something like a 40-45% birth defect incident rate among the Amish population in this area. Once United Way "promised" to begin "helping" the Amish, THEN they started to donate.

 

I had to laugh... The Amish are just too stupid to realize why they have such a high birth defect rate. I have no sympathy for them. I work with them on a daily basis. And I must say, aside from the regular wave of Christians™ in the real world, the Amish have to be the most hypocritical group of people that I'm aware of.

 

Like I said -- I have no sympathy for them. And I don't even feel hateful for saying that.

[R. S. Martin]

I work for a place where they have a little gathering once a year for people who wish to donate money to United Way. For the longest time, the Amish (about 80% of our workforce here) wouldn't donate a dime to United Way.

 

That is, until United Way "recognized" that there was something like a 40-45% birth defect incident rate among the Amish population in this area. Once United Way "promised" to begin "helping" the Amish, THEN they started to donate.

 

I had to laugh... The Amish are just too stupid to realize why they have such a high birth defect rate. I have no sympathy for them. I work with them on a daily basis. And I must say, aside from the regular wave of Christiansâ„¢ in the real world, the Amish have to be the most hypocritical group of people that I'm aware of.

 

Like I said -- I have no sympathy for them. And I don't even feel hateful for saying that.

 

Are you sure they don't know the reasons, or are they like me and don't know what to do about it? I'm wracking my brain for an equivilent to help people here understand what it means for the Amish to intermarry with people outside their own small universe and I keep coming up empty. I can think of comparisons but not of anything "acceptable." And maybe therein lies the answer.

 

Fwee, to help you understand the unacceptableness of all alternative options I will propose something you can do to help alleviate the Amish genetic problem at least in a tiny way. You have two young sons, and I take it they have no Amish blood. Maybe you and your sons should join the Amish. By becoming Amish, you and your sons can in this way introduce new blood into the community in your area. They won't allow you to marry if you have an ex who is alive but if your sons are virgins they are okay so long as they live up to the rules of the church and accept the faith. Surely this would be a small price to pay for The Cause.

 

No? You don't want to change culture? Neither do they.

 

You would have to compromise your values to join their community? So would they to join yours. Who are we to judge whose values are more important? I struggle deeply with this.

 

Innocent children are made to suffer, you say. Children who die in their infancy don't suffer except for the brief time they live. We talk about how we didn't mind being dead before we were born and won't mind being dead after we're gone. Why would these children mind? I pity the young women who have to go through all these pregnencies only to have their babies die or need lifelong intensive care. And the young men who are mandated by their rich bishops to have all these kids (birth control is forbidden) whom they can barely feed and clothe and shelter let alone foot huge medical health care expenses.

 

I don't know the specifics of the community in your area Fwee. I'm just drawing from what I saw in my own community--both from the inside and from the outside. There is nothing simple about the situation. Professionals in this area are deeply concerned. There are some severe mental health issues, and also sexual crimes, where outside professionals have been involved and worked with the community in creative ways. I would say all of this is still in the experimental stage and I doubt that any real impact is felt in the community.

 

To off-set the genetic imbalance they need new blood and they don't want large numbers of converts because that would upset the delicate balance of being in the world but not of the world as they understand it. Too many new ideas and influence from the world would enter the community along with the new blood.

 

They're not going to give up their faith come hell or high water. They will go to jail, even to the stake, before they do that. I would guess that every home has a copy of the Martyr's Mirror. Culture and faith is one and the same to them. Their culture is based on their understanding of scripture. They can't change their dress without violating the dictates of scripture as they understand it.

 

Is that hypocritical? I have no idea. I have no idea how to solve the problem. All I can do is try to figure out how to live my life apart from them. I won't go to the market where they sell their farm produce because I don't need the critical review of their eyes raking me. Fresh produce is not worth that much. I'll live out of the grocery store thank you very much. I have a few neighbours who sometimes give me fresh veggies, or bring me stuff from the farm or market.

[Grandpa Harley]

Genetic problems are common among isolationist cults... It's a long messy way out of the gene pool, but the end game for that sort of smorgesbord of recessive genes is sterility... it's their choice and if they won't evolve they will die... and I don't shed a tear for it, since it's their choice.

 

I chose not to breed since I have nothing to hand on other than a high chance of an ugly death, and enough smarts to see it coming. I don't see that as a thing the species needs.

 

They are a dead race, we should let then pass...

[R. S. Martin]

Genetic problems are common among isolationist cults... It's a long messy way out of the gene pool, but the end game for that sort of smorgesbord of recessive genes is sterility... it's their choice and if they won't evolve they will die... and I don't shed a tear for it, since it's their choice.

 

So in another century or so the horse and buggy Amish-Mennonite population in North America will be greatly diminished I guess, unless something happens to improve the gene pool. And I can see something happening. As communities die out, which will probably happen first in eastern the US because those communities are approximately a century older than in Ontario, there may well be migration to other communities. This will result in replenished gene pools, adjusted theology, and a shifting religious landscape. And a continuing horse and buggy population. And God will once again have marvelously provided for his children.

 

Because, believe it or not, I think they would lay aside petty theological differences if they saw that the only "future" was finding marriage partners in distant communities. With genetic defects over forty percent in some communities, well, it seems like the end might not be all that far off for some. And maybe they are stupid. There are enough Amish communities in the US that it seems surely they could intermarry with other communities than their own. I dunno. It's not my problem. In some communities incest rates are so high it's not funny. I don't know how they handle that. If kids are raped when they're young and then forced to marry the rapist the option to marry into a distant community does not exist.

 

I've read so many stories about people who go away for an education then return to help their own people. But my people would not accept anything I could give them because they forbid higher education so they think I deserted them by the very act of getting an education.

[Ex-COG]

There were some "loops" in my family back in the late 1700's and 1800's, so I am certainly glad that my Great-grandmother left the Anabaptist faith!

 

I fault the leadership of a church/denomination if their teachings bring harm to the followers. Many Amish/Mennonite Bishops have rules so strict that they won't even allow someone to marry another Amish/Mennonite from another district just because of some little thing like a slight difference in dress. We "English" might look at them and think they are all alike, but the Bishop will put a girl under the Ban if she marries a lad who has a wider hat brim than her church bishop allows. Even if they would open up just enough to accept marriages among similar groups, it might help broaden the gene pool somewhat.

[Ex-COG]

In some communities incest rates are so high it's not funny. I don't know how they handle that. If kids are raped when they're young and then forced to marry the rapist the option to marry into a distant community does not exist.

Incest? That would be more than just marrying your cousin. Are you talking about fathers or uncles? But then marriage would be impossible. And if the Amish force someone to marry their rapist, then they are no better than the Islamic fundamentalists who kill their raped daughters because they "shamed" the family. Sounds like law enforcement needs to get involved.

[R. S. Martin]

There were some "loops" in my family back in the late 1700's and 1800's, so I am certainly glad that my Great-grandmother left the Anabaptist faith!

 

I fault the leadership of a church/denomination if their teachings bring harm to the followers. Many Amish/Mennonite Bishops have rules so strict that they won't even allow someone to marry another Amish/Mennonite from another district just because of some little thing like a slight difference in dress. We "English" might look at them and think they are all alike, but the Bishop will put a girl under the Ban if she marries a lad who has a wider hat brim than her church bishop allows. Even if they would open up just enough to accept marriages among similar groups, it might help broaden the gene pool somewhat.

 

That's what I meant by adjusting their theology. They think they are being a light for the world and a good example by their plain clothing. (The wide hat brim is better than the narrow, if I remember correctly.) One of my sisters asked as a rhetorical question how I expected them to retain their good example if I wanted them to compromise their standards and let me eat with them at formal meals if I don't conform to their rules.

 

What they don't get is that the rest of humanity does not view that kind of shunning as a good example. The odd clothing is not viewed as anything but odd clothing. Shunning family members and controling who marries whom is seen as extremely over-bearing and everything but a light to the world. So no matter how you put it, they are NOT being a light to the world. But they think they are and that is what matters. To them.

[Fweethawt]

No? You don't want to change culture? Neither do they.

 

You would have to compromise your values to join their community? So would they to join yours. Who are we to judge whose values are more important? I struggle deeply with this.

Then struggle no more. If a people choose to remain stubbornly ignorant, then they deserve the accompanying consequences of their actions (I.e. inbreeding).

Struggle over, man! Struggle over!

 

 

 

Refusal to evolve beyond stupidity is just plain asking for it.

[R. S. Martin]

In some communities incest rates are so high it's not funny. I don't know how they handle that. If kids are raped when they're young and then forced to marry the rapist the option to marry into a distant community does not exist.

Incest? That would be more than just marrying your cousin. Are you talking about fathers or uncles? But then marriage would be impossible. And if the Amish force someone to marry their rapist, then they are no better than the Islamic fundamentalists who kill their raped daughters because they "shamed" the family. Sounds like law enforcement needs to get involved.

 

I don't know too much about it. It's not talked about. So I don't even know if it happens for sure. I've just heard whiffs of stuff that was taboo to mention. It was before I knew language for this stuff. I was a single woman, you know, and not very bright about this kind of stuff, and had zero sex education. Other people would make comments about stuff and seem to know what each other meant and I knew better than to ask; others tended to be brighter about this stuff and would treat me like an annoying child if I asked too many questions about it. So all I've got to go on is instinctive hunches because of this taboo stuff that can't be mentioned and what I've learned in recent years (mostly in university and on the internet) regarding what this taboo stuff actually tends to involve in puritanical segments of Western society.

 

I can't speak for the Amish but it seems to have been traditional for Western society for the man to "do right by the girl" which meant to marry her, if he got her pregnant. I don't know if anyone ever differentiated between rape and consentual sex but I very, very seriously doubt it. Logic: Woman turned on man and therefore wanted sex. Man got her pregnant and therefore had to "do right by her" which meant take care of her and his child, which translated into marrying her because that was the only way for a woman and child to be protected economically before women were persons with bank accounts. Besides, no one else would want to marry her so it was his responsibility.

 

You're right, law enforcement needs to get involved but if all are adults according to age there's not much anyone can do. But what 18 or 19 year old woman is going to have the emotional and financial resources to leave the home community for better fields even if not raped or pregnent? If she goes to another community of like faith, even if slightly more liberal or conservative, her story will follow hot on her heels. The new community will check out her history. THERE IS NO HIDING. She's going to have to have a pretty good story and reputation to make a new start, plus get in with the right people. The thought occurred to me in passing because my life was so difficult but I knew I could never run away or hide so securely that no one knew could figure out who I was or where I came from. And if she's raped or pregnant in that kind of society, she'll be lucky if anyone is going to stand by her.

 

Two cases come to mind. One was a man and woman of my youth, both single. They were cousins. Man raped woman, got her pregnant. They were forced to marry. Very seriously sad situation. Baby lived only a few months. They have other children. One child got killed in farm accident. Marriage was seriously unhappy--so much so that they were separated for a time--something that is unheard of in OOM families. I have no idea what life is like for that family today.

 

The other case involved a married man and single woman, extramarital sex I think. Both were older and there was no pregnancy. I never heard it explicitly stated that they had sex but I would guess they did. The woman could not understand what she did wrong because the man wanted her so badly. According to one story, she had locked the door at night but he got loud so she let him in. She was told that men cannot control themselves and that it is the woman's responsibility to keep things from getting that far.

 

I agree that she was not innocent. She had a telephone and she could have called for help if he did not take her No. Both were excommunicated for a season. They were not forced to marry because the man was already married. Life went on pretty much as before. The man's legitimate wife had no choice but to live with the knowledge that her husband cheated on her and that the entire community knew about it. I never heard her side of the story.

 

In the community where I come from, there were also a few cases of under-age incest or sex offenders where law enforcement did get involved. No pregnancy because of the ages of the children. I don't know the nature of the behaviour. In another case, a young woman ended up in a psychiatric ward and it was discovered that her father had molested her, though there was no pregnancy. She ended up being "adopted" by a family the man of which had molested his wife's maids--no pregnancies either. She claimed to really want to live with that family. She was of age so no one could oppose her decision.

 

It was a highly questionable situation where it is not known to what extent manipulation may have been used by the man to get her to stay in his home. He and his family left the church right about that time, which conveniently removed him from the details of his history. He seems to be one of those charismatic people who can wind anyone around his little finger and get people to believe his side of the story no matter how ridiculous it seems. Only when strong evidence was brought against him from the family of his wife's maids did anyone oppose him. And the opposition was not as fierce and long-lasting as it is in most cases.

 

These are things that happened in my time in my community. I get the impression there are communities with lower standards. When people believe that they are outside or above the law because of their religious position anything happens behind closed doors. And the community loyalty is so high that no one will rat on anyone. Church leaders will promise judges and police that they will deal with the situation and then let the offenders off with an admonition or apology. The case is not dealt with anywhere near as seriously as a case of "false doctrine."

 

Given that the Bible lists sexual offenses as serious offenses in many places, the argument could be made that not dealing with sexual offenders as serious violators of sacred law IS a false doctrine. So there!

 

In a way I feel like I'm talking about stuff I have no right to talk about because I don't know too many real facts. I feel like I'm betraying people, ratting on people. But on the other hand, I HATE it when the Amish and Mennonites are made out to be such idyllic communities where everyone is so happy and life is so ideal when I know it's anything but for a lot of people. I think they have a LOT in common with the Muslims. They are officially pacifists so they don't go out and kill people, themselves or others, openly. Sometimes I think pacifist compensate by honing psychological weapons to lethal levels. And then they can say, "I didn't do anything."

 

Yeah right you didn't "do" anything!

[SWIM]

So in another century or so the horse and buggy Amish-Mennonite population in North America will be greatly diminished I guess, unless something happens to improve the gene pool.

 

The only thing that could improve this is new converts. Since most of them are there not by choice, but because they were born into it, and painsakingly brainwashed to remain, this solution appears unlikely.

[R. S. Martin]

So in another century or so the horse and buggy Amish-Mennonite population in North America will be greatly diminished I guess, unless something happens to improve the gene pool.

 

The only thing that could improve this is new converts. Since most of them are there not by choice, but because they were born into it, and painsakingly brainwashed to remain, this solution appears unlikely.

 

I think you missed the nuances of what I mentioned further on in the post. Perhaps the general population is unaware of the very large number and variety of Amish-Mennonite communities throughout North America. Most of these communities are small and inbred within a certain geographical area. This means that genetical possibilities exist outside those geographical areas.

 

The variety of these communities is based on minute theological differences. Almost without exception, marriage outside one's own specific church is strictly forbidden. If there is a church split, you gotta choose your marriage partner from the side of the split you happen to be on. If you're going with somebody but not married when a church splits, and your family ends up on one side and your friend's family ends up on the other side, you have to make some tough decisions: Will one of you sacrifice your family (if so which one) or will the two of you split up?

 

If you are already married and the same thing happens, on which side will you and your spouse be? Divorce is not an option. Options that are possible are:

 

1. each person is a member of a different church (extremely rare and difficult in cases of horse and buggy transportation; I don't know how common it is in cases of conservative car churches)

2. one person is a member and the other person is not; both attend same church (more common in cases where agreement cannot be reached)

3. no church membership and possibly no church attendance (rare but it happens)

 

In other words, horse and buggy people normally believe in God and go to church. When they apostate, they normally get a car and dress like the rest of the world. But there are rare exceptions.

 

Another important nuance. Not all Amish and Mennonite people use horse and buggy transportation. There are large communities throughout North America who drive cars but their dress is almost identical to that of the horse and buggy people.

 

Here's an important point. While marriage across lines is strictly forbidden, there is nothing whatsoever (outside of social ostracization and the likes) to keep people from moving across those lines as they see fit. Some people start in a horse and buggy church because they were born there. They are baptised and married there. Then they move to the strictest car church for a few years. Then they move to the next car church up the ladder until they find their comfort zone. Very often their children will go all the way to the world, but will still be Christian and hold marriage sacred. Their children might get into things like divorce and remarriage and unusual religious practices and/or beliefs, drugs, the whole kaboodle of "the world." "What a man soweth he shall reap in due time" the devout will say as they shake their heads and resolve not ever to slack off in teaching the true way. That's the general pattern I see in my own community here in Ontario. There are exceptions to every rule.

 

And it is this movement across the lines that I see as being the possible salvation of the genetic problem when people start dying off. There will probably not be a mass migration. Just a general trend for young people to find partners in a certain neighbouring community. For example, two men my age from Ontario got themselves wives in Indiana. Both communities are OOM. Even so, theological adjustments had to be made.

 

Another point. These people do not believe in using birth control of any kind. Thus, looking strictly at numbers, even if four out of six kids in one family suffer from birth defects, there are still two healthy kids to keep the community alive. In the regular North American family where there are only two kids, the numbers game would look somewhat different. NOTE: I'm not talking about ethics here. I'm talking about numbers.

 

Another factor: There is yet another group of plain Mennonites in North and South America that have not been mentioned here. The Mexican Mennonites. And on the global theator there are Bruderhof and other plainly dressed people. There's some in the UK and in Australia that I know of. I think there are, or have been, plain Mennonite missions (churches?) in China.

 

So, from a theological perspective, we've got a pretty large gene pool from which to draw to keep the faith alive. From a cultural perspective, you gotta realize that the Amish and Swiss Mennonites (all the Mennonites that are not Mexican) are German peasant stock. It's been around for a thousand years, I'd guess, and probably won't die out just because of a few birth defects in a few inbred communities. These people have survived inbred communities in the past and they will do so again.

 

If you want a few more statistics, it has been estimated that the Old Order Mennonite community here in Ontario (the group I come from, exluding all the other identical groups) has about 6000 people counting children. The last time any of these people have bred with your Amish community in Ohio was probably before 1800. So there's probably about ten thousand Ontarians ready to breed with your Ohians. What would that do to the genetic problems do you think?

 

Oh, I forgot to ask them whether they are willing. I'm absolutely sure they're not. The point is, the possibility exists and I feel confident that it will be exploited when and if necessary. Some communities will die out and there will be some changes in the religious landscape. But this has been the case since time immemorial. Or since the birth of Christianity. Other communities will be born.

[Guest CBenjaminHaag]

"Gottes Wille," Mye Asse...

 

Someone help me puzzle this out...people are willing to subject their children to short lives (or, as the CBS stories suggests, a high number of perhaps merciful deaths) of misery to keep the illusion of security an a community that will "shun" (from the Old Amish word meaning "fuck off") people it has known for years, ostensibly when they're in the greatest need, just to preserve it's supposed standards?

 

 

Benjamin, relieved that he has never fucked his eighth (or any) cousin