Saturday, August 23, 2008

Bodily Autonomy: Jehovah's Witness Teens and Blood Transfusions

Lately, I’ve been doing a lot of thinking about bodily autonomy. It seems to me that when feminists discuss this issue it is usually with regards to reproductive justice. However, I’ve got something different in mind right now and I’m hoping that others could give me some input on it.

As a member of disability culture, I have witnessed how those within my community are particularly susceptible to having our wishes ignored even when we are able to express ourselves quite clearly. I’m not just referring to those situations that happen during our day to day lives. It’s really aggravating to hear about how often non-disabled people feel free to just grab someone’s wheelchair and move it without even asking for permission from the person sitting in the chair. Things much worse than this occur inside of hospitals all the time. Medical professionals sometimes exhibit the same ablism I’ve witnessed in public. Given this environment, I’m loathe to say that doctors should be given permission to over-ride a patient’s stated will. However, I am beginning to think that my view may need to be reassessed.

When it comes to abortion, my feeling is that teenagers want them should be able to have them. I don’t think we need the state deciding whether or not a person should continue a pregnancy. For me, it’s really cut and dry. However, should this apply to all medical decisions that a teenager wants to make?

What about the issue of blood transfusions? If you live in the United States, chances are you’ve had Jehovah’s Witnesses knock on your door at some point trying to preach their brand of religion. Three of them knocked on my door today. There are a few people in my family who are members and over the years many of them have attempted (unsuccessfully) to get me to join their ranks, so I’m fairly familiar with their beliefs.

Jehovah’s Witnesses vary from the majority of Bible-based faiths in several ways that cause many to see them as a non-Christian religion. However, none of that really matters to me. After all, Christianity comes in so many flavors that we could go on and on about what is and isn’t truly Christian. What interests me is one of their more unusual of beliefs having to do with blood transfusions.

Those who have been baptized into the faith are forbidden to receive blood transfusions, even in the case of a medical emergency. On their website, the official position is explained here:

Is it wrong to accept a blood transfusion? Remember, Jehovah requires that we abstain from blood. This means that we must not take into our bodies in any way at all other people’s blood or even our own blood that has been stored. (Acts 21:25) So true Christians will not accept a blood transfusion. They will accept other kinds of medical treatment, such as transfusion of nonblood products. They want to live, but they will not try to save their life by breaking God’s laws.—Matthew 16:25.

Now, if an adult decides that they want to live according to the tenets of that faith and they are willing to deal with whatever physical consequences there will be as a result of their refusal, then I see no reason for me to butt in at all. But what about when the person in need of treatment is a child or a young teenager?

Oftentimes, children are pushed to get baptized, sometimes before they are even teenagers. Regardless of their age at the time, once they are baptized, they are expected to abide by all of the same rules and prohibitions that apply to adult members. This means that they are required to resist any attempts to give them blood transfusions and if they do willingly receive blood, then they are often excommunicated/shunned/disfellowshipped from the congregation of believers.

This disfellowshipping goes beyond the Catholic version of excommunication where you are no longer considered qualified to partake of the consecrated Eucharist or have a wedding officiated by a minister of the church. Jehovah’s Witness ministers announce the person’s excommunication from the pulpit in front of the entire congregation, so there’s also a public humiliation factor involved in this. As a Jehovah’s Witness, being disfellowshipped means that members are not allowed to have any dealings with you, this includes those who may be a part of your family and even reside in the same home as you do. According to the religion, other Jehovah’s Witnesses are required to refrain from even speaking to you and they can also be disfellowshipped if they knowingly disobey this edict. They are instructed not to even sit at the same table and eat a meal with the excommunicated member.

What this means for teens in Jehovah’s Witness families is that there is a very heavy price to pay if they want to go against the demands of their religion, even if their intention is simply the preservation of their own life. The religion is so insular that such “disobedience” often leaves the person cut off from every close relationship they’ve been allowed to cultivate throughout their life. Youths are not allowed to develop friendships with non-members so disfellowhipping means that none of your friends are allowed to communicate with you in any way. When I was a teenager, I didn’t exactly want to talk to my family and friends about everything going on in my life but I can’t imagine what I’d have done if they had been forbidden to speak to or be around me even when I did want to turn to them for advice.

Okay, to bring this back to the issue of bodily autonomy, let’s look at how this plays out when Jehovah’s Witness teens are in need of medical treatment. Let’s say a thirteen year-old girl (or boy) comes in after being in a car accident and she’s lost a lot of blood. Recognizing there are times where blood substitutes (e.g. Hartmann’s solution, lactated Ringer’s solution) may be used in medicine, there are still some situations where these are medically inappropriate or inadequate. So, for the purposes of this discussion, let’s say this situation is one where doctors agree that the patient will surely die unless they receive a blood transfusion.

If the girl is unconscious, parents are usually given the legal responsibility of making medical decisions for her. Now, if those parents are Jehovah’s Witnesses, their religion says they must refuse to allow their child to receive a blood transfusion. This applies even if the teen has never been baptized into the faith, by the way.

In such a situation, doctors can go to the courts and seek to have them appoint a temporary guardian for the child on the grounds that the parents’ blanket rejection of certain treatments regardless of what’s deemed medically appropriate is not in the child’s best interests. I’m fairly comfortable with that, I think. I wish there was a better way but I really don’t know that would look like.

But what if the patient, this same Jehovah’s Witness teen from the hypothetical scenario, is conscious when they are presented before the doctor for treatment? If the baptized thirteen-year-old doesn’t refuse to receive a blood transfusion, then they face complete rejection from their entire community by being disfellowshipped. The parents are required to inform the clergy if the child does express a willingness to receive blood, so it’s not as if the child can simply keep their decision private. However, if the doctors go to court and have the decision taken out of the parent’s hands, then their religion doesn’t consider the teen to be guilty of disobeying the edict regarding blood, in effect allowing them to receive potentially life-saving treatment and avoid being disfellowshipped.

This means that the courts (or their appointed representative) might make a decision that goes against what the teen actually says she wants or what the parent says the child would want. Of course, it doesn’t take a lot of effort to see how that sort of thing might be ethically problematic. Still, if the religion does provide an exemption from punishment for those teens who have the decision taken out of their hands, should the medical establishment and the judicial system provide them with the means to avoid the draconian reprobation and isolation they’d otherwise face if they dared admit to wanting to accept blood?

Over the years, I have seen how our society tries to make people with disabilities feel guilty for wanting to live. When it comes to requiring several assistive devices in order to continue existing, the assumption is “Of course, no one would want to live that way!” I can’t even count how many times I’ve heard non-disabled people say something to the effect that they’d rather die than live with this or that disability.

Well, ya’ know, some of us just don’t feel that way. Some of us can think of far worse things to have to live with and we are quite willing to adapt and accept whatever limitations our bodies might impose on us. However, when you know that the health care system is set up in such a way that your long-term survival might very well send your family into financial ruin that they’ll never be able to dig themselves out of, it’s hard not to feel guilty about wanting to continue living. When you know that your continued existence will probably mean that your loved ones will have to forgo many of the activities that they formerly enjoyed in order to care for your basic needs, it can be difficult to just ask them to keep on sacrificing until your body gives out. Or at least, that was my experience when The German (my life-partner) was forced to provide all of my care from the moment I left the hospital after my chest surgeries. We were looking at a situation where no one could really tell us how long I was going to need a lot of care or even how long I’d be alive to need any care at all. We had to deal with the possibility that he’d be responsible for caring for me until the cancer killed me. I wonder if non-disabled people can understand the depth of guilt this all brings about.

Understanding the pressure that society puts on people with disabilities and the added threat of public humiliation and utter rejection from your family, can Jehovah’s Witness teens really be expected to be able to express a desire to accept treatment that might go against the official teachings of their religion? Maybe some can and I’m sure some do. However, I’d wager there are a fair number who wouldn’t be able to resist societal and religious pressure to choose death rather than consent to certain forms of treatment.

As a feminist with a recognition that we live in a patriarchal society, I’m concerned about how those Jehovah’s Witness teens who are female will suffer even more than the boys in the religion because many (most?) of the Abrahamic faiths seem to be practiced in a way that leaves girls less equipped to survive on their own if they choose to leave the religion they were raised in or they are kicked out of it for some reason.

I’m not sure what the bottom line is here, folks. How do we weigh the need to respect everyone’s bodily autonomy with the awareness that sometimes people are not (or do not feel) free to voice their true wishes? When it comes to abortion, it’s fairly easy for me. As Shannon just pointed out in her post, generally speaking, abortions don’t hurt women. However, not having enough blood to sustain life definitely hurts. In fact, it’ll kill you.

I wonder, does the principle that teens are old enough to decide whether or not to seek an abortion mean that we should always abide by what other medical decisions they say they want to make? Should an exception be made if we know that they are under intense coercion by religious leaders and adult family members? Conversely, if Jehovah’s Witnesses think that teens are mature enough to decide that they are willing to die rather than take blood, is it contradictory for them to claim that teenagers are not mature enough to understand the repercussions of having an abortion?

I know this post touches on a lot of subjects but I’d really love to hear what folks think about the questions I’ve raised and any of the other aspects of this issue.

10 comments:

Tom Rook said...

I probably do not remember the quote accurately, but I think it was Shakespeare that said something like "Cowards die a thousand deaths, the Valiant only once".

But, unlike Shakespeare, JWS generally have absolute faith in the resurrection by Christ at the "Last Trump", or whatever, and it is a clear and reoccurent theme throughout the Bible that God holds blood sacred.

Is it a coincidence that Jehovah's Witnesses, who also hold blood sacred war against NO ONE, and the Germans, who eat blood pudding and sausages, have filled the Earth with human blood?

No.

Think about it.

The parents are responsible before God for the lives of their children, not the courts, you me or anybody else, although they may have the power to enforce their will on families, and assume responsibilities with law they really have no right to have.

The Parents are responsible for their children's lives...not the children.

They are CHILDREN.

Under this concept the "sins" of the people who supported the Japanese Empire to wage war against the United States are responsible for the deaths of the 65,000 children of Hiroshima who were burned alive by the Atomic Bomb of August 6, 1945, and for the similar number of children who were executed because of their parents responsibilities three days later in August 9, 1945.

People have to be responsible for their actions...and if their actions mean they die ...so go the children.

In the Jewish system, Israel often destroyed the cildren in warfare, because they were the charges of their parents.

As a practical matter ... what do you do with 10,000 children who want revenge on you after you have killed their parents?

That is why people today have largely abandoned a life based on absolute principles, and blow like leaves in the wind, and are horrified when you don't.

Living a principled life is HARD.

The reward is self respect now.

...and perhaps a resurrection by God later.

Tom.Rook@Technik-SA.US

Anonymous said...

As a Jehovah’s Witness, being disfellowshipped means that members are not allowed to have any dealings with you, this includes those who may be a part of your family and even reside in the same home as you do.

This is not strictly true. Disfellowshipped witnesses living in the same home as other witness family members have normal relationships except that there normally will be no discussion of spiritual matters between them.Disfellowshipped witnesses living outside the family home are involved in essential family matters which concern them.

bint alshamsa said...

Tom Rook,

You raise some interesting ideas although some of them seem to be based on assumptions. For instance, how did you conclude that JWs are any less inclined to experience doubts than those in other religions? Furthermore, Jehovah's Witnesses are taught that there is no reason to believe that one is definitely going to be resurrected. Even in their literature it is referred to as the "resurrection hope".

With regards to the concept of God holding blood sacred, there is also a lot of differences within the ranks about what that means with regards to transfusions. If you ask a Jehovah's Witness if they think accepting certain blood components is okay, they might say yes or no. Even those who do see nothing wrong with receiving blood components differ with regards to exactly which blood components they find acceptable (i.e. not in violation of God's commands).

It is interesting that you would attempt to compare Jehovah's Witnesses with those Germans who eat blood pudding and sausages because it is well reported that, in the Nazi concentration camps, many JWs did partake in the eating of blood sausage even when other foods were available. We could get even more in-depth with this issue by delving into the fact that all meat, no matter how well-drained will still contain blood. Yet, JWs don't view this as any reason to abstain from eating meat. The amount of animal blood that's okay for a JW to consume has never been spelled out by their governing authorities, so the laypeople are left to guess on their own even though the eating of animal blood is something that one can be disfellowshipped for.

Furthermore, this idea that JWs war against no one is rather erroneous, despite their official claims. The organization has no problems with owning stock in the companies that produce military equipment.

With regards to your statement that

"The parents are responsible before God for the lives of their children, not the courts, you me or anybody else, although they may have the power to enforce their will on families, and assume responsibilities with law they really have no right to have."

I can only ask, "O RLY?" See, here's the problem with that. The state does have a right to decide whether parents are exercising their will appropriately. If what you said were true, then parents would have a right to beat their children to death, molest them, and even sell them. Yet, there are very few people who would see that as acceptable, I think. Jehovah's Witnesses accept the concept that the state does have certain obligations to its citizens. If the believed otherwise, they wouldn't have such a proud history of going to the state in order to assert the rights that they claim the state has a responsibility to provide them with.

Furthermore, Jehovah's Witnesses certainly don't accept the idea that parents have an absolute right to enforce their will on their families. If this were the case, then they would teach children to simply go along with whatever their parents tell them to do, but this is not the case. They are only told to be obedient inasmuch as what the parent commands doesn't go against the official teachings of the religion. In cases where the teenager is a Jehovah's Witness and one or more of the parents are not, JW teens are still required to refuse blood transfusions even if their parents want them to have it.

I see no evidence that people are horrified when they see individuals who live a principled life. I think what can horrify people is the particular principles that some of these individuals decide to hold on. For example, if your specific principles demand that everyone who disagrees with you should be physically assaulted, then the fact that you have principles and you're willing to stick with them probably isn't what most people are going to care about. They are going to care about the fact that you go around engaging in a behavior that is unethical and isn't that as it should be?

You say, "The reward is self respect now". Well, how did you determine that? One could argue that simply following the demands laid out by the JW religion isn't really taking responsibility for the decisions one is making. If you are a JW and you have children, how can you be showing responsibility for the care of your kids if you are willing to die rather than receive a blood transfusion? If you die, you're leaving that child in care of someone else and relinquishing responsibility over them.

bint alshamsa said...

Anonymous,

Given the fact that being a Jehovah's Witness means that your entire life is supposed to revolve around your spiritual activities, being disfellowshipped means one is necessarily kept out of the core of the family circle.

Jehovah's Witnesses are required to attend religious services three times a week. Each member is expected to study and be able to answer questions about what's to be discussed at those meetings. On top of that, they are also expected to go out for a significant amount of time each month to engage in proselytizing the general public. Then there are the yearly religious revivals they are expected to attend.

In short, would be left out of almost all of family life. Jehovah's Witnesses are taught not to even eat a meal with disfellowshipped members. Meals. Can it get any more basic than that?

BLESSD1 said...

Bint, that was an excellent post, and an excellent response to the questions/beliefs of the folks who responded to it. Kudos!

risa said...

Good work, Bint. I feel privileged to read you.

As parents, we had once the decision what to do about several devastating birth defects to one of our children. One of these, a very serious case of hypospadius chordee, involved quite a bit of surgical reconstruction. The doctors said this needed to be done, like, right away. So the child, too young to know what was going on, was not consulted.

We now know that this condition is one of those on the Intersex spectrum. And that intersexuals and their families have begun to campaign for self-determination.

I asked our son about this and he said we had made the correct decision, and not to worry about it. But the issues of parental control over their children's bodies and of the authority of (often not fully informed) doctors is one that I still feel I haven't thought through, or know enough about. Throwing religion into the mix only makes the waters even muddier.

I once saw a Mennonite family carry out an ordered shunning of a much loved and relied-upon eldest son by serving him, his wife and children at a separate table, though in the same room as everyone else, for Thanksgiving. It seemed to me the shunning was so not in the spirit in which this wonderful family generally conducted their lives. Their solution amused me at the time, but I still wonder how all that turned out.

Anonymous said...

JWs are a very dark religion. What you get on the doorstep is not what you get in reality. 'Silent Lambs' is exposing that dark side and my advice to everyone is stay away from them and if you are one, run for your life!

bint alshamsa said...

Silent Lambs is a very good organization. Thanks for mentioning it. If they had been around when I was young, I know a woman whose life might have turned out a lot better than it did.

Anonymous said...

My background: I was a 5th generation JW, baptized at age 12. I left the religion at 25, as I simply couldn't put faith in the Bible as being the word of God. Without that, all the doctrines on which the JW religion is built are left unsupported.

All that being said:
1) If you're a young person and you are disfellowshipped, your family life within the home could continue much as normal. The restriction would be that you wouldn't share in conversations re: spiritual matters.

2) When I was a teenager, I was fully prepared to die for my faith. Forcing a blood transfusion on me would have been heinous.

3) Lest you think I haven't suffered for leaving the religion, despite not having been officially disfellowshipped, I have lost everyone I knew till age 25 with the exception of 4 people. It sucks.

4) JW's may not believe the way you and I do, but many of them are very devout and truly believe that death is not the biggest deal in the world. How God views you, and your relationship with him, are much more important. Who's right? I don't know. I'd say those life after death questions are ones the government needs to stay out of.

I'm an academic now, a PhD student, and I suffered a lot for leaving the JWs. But I understand why they believe as they do, and I respect them, and their right to make their own choices.

shiva said...

This raises some very interesting points. Bodily autonomy is pretty much the centre of my belief system, so i pretty much support anyone's right to refuse any treatment, even if that does result in death. But, yeah, death or complete shunning by one's family isn't a choice anyone should have to make (though, from what i've heard and read about JWs, shunning might actually be a blessing in disguise, especially if it would result in the kid/teenager being fostered by a non-JW family)...

I didn't know that JWs found it acceptable to recieve a transfusion if it was nonconsensual. I thought their position was that the physical fact of another person's blood having entered one's body automatically resulted in eternal damnation, regardless of choice (this coming from a discussion of anti-doorstep-proselytising techniques, in which it was said that a sure way to get rid of JWs is to tell them you have had a blood transfusion, in which case they will leave you alone as you are then irreversibly "unsaveable" in their eyes).

(I've been thinking a lot recently about a certain ideology of "body acceptance", as preached by both some religious people and some feminists, and how it potentially conflicts with bodily autonomy; i wrote a possibly somewhat incoherent post about it last night, which, having read this, i would really appreciate your thoughts/responses to...)