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.