My Grandmother’s Body

Last year, an acquaintance of mine informed me that although he was pro-choice, he thought other pro-choicers (like me) often steamrolled over the very real tragedy of abortion (the baby-killing) in their eagerness to talk about “abstract right”

And then, dear Reader, I shot him.

… okay, I didn’t shoot him. But I entertained the notion. I also blew up at him, which is something I wasn’t doing that often back in 2011 (blogging has made me such a better, more publicly pissed-off human being).

What I said, as I recall, was “ABSTRACT RIGHTS FOR WHOM, YOU PRIVILEGED DIPSHIT? THE RIGHT TO CONTROL MY BODY IS NOT AN ABSTRACT RIGHT TO ME.”

And then I went on a long rant about how not-abstract the right to have an abortion was.

My acquaintance never responded, which I took as a victory.

I mention this incident not because it was unusual – I’ve gotten into lots of fights about abortion – but because of the argument led me to an epiphany. As I, filled with rage, typed up my response, I finally hit on why, exactly, abortion was such an important issue to me.

So why? Why do I care so much?
Because abortion isn’t just about a woman’s right to choose what happens to her pregnancy. It also symbolizes a woman’s right to control her own body FULL STOP. A woman has a right to abortion because her body is her own – not the government’s, not her partners, not her relatives, not the doctors.

There are very few things less “abstract’ than our ability to control our own bodies.

And, crucially, the right to bodily autonomy is not just about abortion. It’s not even just about contraception, or reproductive rights, or consent.

Not surprisingly, I have a story to explain my point.

So, random fact: I actually first started thinking about broader issues of bodily autonomy when I realized that November was pancreatic cancer month. Yes, I know, that seems random. But there is a reason to the random, I promise.

Pancreatic cancer is arguably the deadliest of all cancers in terms of survival rate. The one-year survival rate for all stages is 25%. The five-year survival is 5%. The median survival rate for metastasized or locally advanced cases (which account for 80% of all diagnoses) is 6 to 10 months. Pancreatic cancer kills almost as many people as breast and prostate cancer, yet receives less than 1% of the funds for cancer research – possibly because very few people survive the cancer long enough to become advocates.

A pancreatic cancer diagnosis is basically a death sentence.

When my maternal grandmother was in her early forties, she was diagnosed with pancreatic cancer. She turned out to be somewhat of a miracle case, surviving almost ten years before the disease metastasized to her liver and killed her.

Here’s where this story gets back to bodily autonomy. My grandmother never knew she was a miracle case because she never knew she had cancer at all.

Wait! You say. She was diagnosed! How could she not know? Did the doctor give her the wrong diagnosis by accident, or something?

Oh, ha-ha, I wish. In fact, my grandmother’s husband (my… step-grandfather?) and her (male) doctor thought that my grandmother would be devastated if she found out she had cancer.

So they decided not to tell her. At all.

She was horribly sick for ten years without ever knowing why. And she died without ever knowing why.

I realize there may be people reading this who will think my grandmother’s doctor and husband did her a favor by sparing her pain and grief. My father is one of those people – when we talked about my maternal grandmother recently, he said he “could not find fault” in her husband’s decision to lie.

My grandmother was so afraid of death, after all. It was better for her not to know.

Welcome to paternalism.

You know what? Maybe my grandmother was happier overall than she would have been knowing her real diagnosis. But that was not her husband OR her doctor’s choice to make. It was not their body. It was not their life. It was not their choice.

It was her body, her life, her right to know.

But these men thought they knew what my grandmother needed better than she did. They thought they had the right – nay, the obligation – to control her life.

Let’s think about the very real consequences of their decision, shall we?

My grandmother could not make choices about her own medical care, since she did not know what her actual medical conditions were.  Certain procedures must have been unavailable to her, since they would have forced doctors to reveal the secret (there aren’t a lot of reasons to get chemotherapy except cancer).

My grandmother could not make informed choices about how to live her life, since she did not know crucial facts ABOUT her life. She did not know she was living with a deadly illness. She did not know that her prognosis was severe; that doctors thought she would survive a few months or a year, at most. Maybe my grandmother would have made different choices. Maybe there were things she would have wanted to do. But she did not have the information necessary to make those choices. Tragically, she could not even decide how to prepare (or not prepare) her youngest daughter, who was a very young child when my grandmother was diagnosed.

And, although she did not know it, the lie made my grandmother utterly dependent on her husband and her doctor. They were now in complete control of her medical future. They could have chosen not to treat her. They could have chosen to use highly experimental drugs. Her husband could have withheld medication. He could have used his knowledge to manipulate her into making big financial decisions that she would not have made knowing her prognosis.

As far as I know – and I do not know a lot – the doctors and her husband did not abuse their power. I mean, except for the part where they lied to my grandmother for TEN YEARS. Other than that.

But they could have. From the time her doctor and her husband decided to lie to her, to the time she died, my grandmother did not have bodily autonomy. She could not control her own life, or her own body. Other people had that control.

My grandmother died of pancreatic and liver cancer two days before I was born.

***

Paternalism did not kill my grandmother. Cancer did. But paternalism took away my grandmother’s ability to make informed choices about her body and her life.

And this isn’t just a random horror story. It’s the dominant narrative of our past. Women and other minorities have not traditionally been allowed to control their own bodies. Their male relatives did. Their doctors did. The government did. Their owners did, in many cases. The US government sterilized mentally ill women and native women. Hospitals forced – and continue to force – women to undergo dangerous medical procedures without informing them, or seeking their consent. Hell, for over 30o years, black peoples in the United States were considered property.

It’s not just a historical horror story either. In Kansas, a law passed this year that allows doctors to lie to women about their pregnancies if they believe that the information might lead the woman to choose abortion.

Doctors can lie to their patients to stop them from getting abortions.

Bodily autonomy is not just about abortion. But there’s a reason people get so mad when our right to choose is threatened. We know that abortion is just the tip of the iceberg. We know bodily autonomy is not some kind of contingent thing where you can say “you control your body up to the uterus, but after that, it’s in the government hands.” We know what happened to us when our bodies were not under our control. And we’re not interested in going back.

I’m not particularly angry at my step-grandfather, or my grandmother’s doctors. I think what they did was disgusting and unethical, yes. And I’m rather grateful that I don’t have to interact with my step-grandfather. But I’m not that angry at them. I’m angry at the system that made it okay and normal for them to lie to my grandmother. I’m angry at a system that told them it was okay for them to take control of this woman’s body and life. And I’m angry that that system still exists. That we’re still fighting for the basic right to bodily autonomy today. In 2012.

People are allowed to control their own bodies. Women very often are not.

Rebecca West once said: Feminism is the radical notion that women are people. It’s a surprisingly radical notion.

***
Any comments that justify the decision to hide my grandmother’s illness from her will be mocked or banned. So will any that engage in victim-blaming by arguing that my grandmother “must” have figured it out. Maybe she did, maybe she didn’t. That’s not the point. Of any comments that talk about how difficult it must have been for her husband to hide the truth from her will? Yeah, it was probably hard. You know what would have made it easier? TELLING HER THE TRUTH.

Comment with care


18 Comments on “My Grandmother’s Body”

  1. kshyama says:

    I love you. awesome post – particularly these lines “Paternalism did not kill my grandmother. Cancer did. But paternalism took away my grandmother’s ability to make informed choices about her body and her life.

    And this isn’t just a random horror story. It’s the dominant narrative of our past. Women and other minorities have not traditionally been allowed to control their own bodies. Their male relatives did. Their doctors did. The government did. Their owners did, in many cases. The US government sterilized mentally ill women and native women. Hospitals forced – and continue to force – women to undergo dangerous medical procedures without informing them, or seeking their consent. Hell, for over 30o years, black peoples in the United States were considered property.

    It’s not just a historical horror story either. In Kansas, a law passed this year that allows doctors to lie to women about their pregnancies if they believe that the information might lead the woman to choose abortion.”

  2. Tori says:

    Can I contrast your grandma’s story with that of my dad, who died a few years ago of metastatic liver cancer?

    Though he said he’d suspected for some time, he didn’t tell me about his diagnosis until approximately 2 months before he died. Translation: He had control both over pursuing (or not) the diagnosis and telling (or not) his friends and family members about it.

    Doctors had offered him the option of chemotherapy with not-the-best percentage change of good results (I do not know the exact percent, only his opinion of it), so he declined. Translation: Once diagnosed, he had control of accepting or rejecting treatment options, based on his personal priorities.

    He got signed up for hospice care. Translation: He chose palliative care, to spend his last days at home, and to issue a DNR order in case of emergency transport to hospital.

    Sum total? It is exceedingly possible that, accounting for various factors (translation: I am sure he avoided an initial oncology consult like the plague), my father died before the point at which doctors could not prolong his life any further. However, it is certain, that he went out on as close to his own terms as the universe permitted. He got to play the hand he was dealt.

    So should we all.

  3. Myriad says:

    Firstly: This story is horrible. Your poor grandmother. BOO paternalism!

    Secondly: I enjoy the fact that your definition of a “better” human being is a “more publicly pissed-off” human being. And I personally think you are an awesome human being, whether pissed-off or not :)

  4. You make some good points about annominity, but you seem to take that stance to a severe extreme. The fact is, our body is not our car. It’s not our house. It is a part of what we are. When something is done to my body, it is done to me. When my body is sick, I am sick. And the fact is that nature has not designed us to have this utter and complete control. I realized this when I was preparing to give birth to my daughter. I didn’t want to let some doctor/hospital to put me on their generic birth plan. I didn’t want to have to fight them or worry that my birth plan wouldn’t be followed. I choose to have a home birth under the care of nurse midwives. However, as I got toward the end of my pregnancy and attempted to create a birth plan in case my care had to be transferred, I realized I had a deep seated fear of being out of control. I also realized that what I wanted in labor wasn’t the freedom to control the labor, but the freedom to obey my body. And in that I realized that if my care needed to be transferred, I didn’t need even a single page birth plan. I needed to trust my husband to advocate for me. In the end, what seemed a choice to stay in control was rather a choice in submission. (I had a great birth experience, btw)

    Perhaps my point here is difficult to understand, but if you believe that you must be in control of your body as opposed to the government, a man, a doctor, than in some manner you are objectifying your body and treating it as your slave. Sometimes what our body goes through is not our choice and shouldn’t be our choice. Sometimes surrendering and submission aren’t bad things. Overall we must strive for a balance between the two. I don’t see that balance here.

    • C.D. says:

      Yes, but YOU CHOSE to have your husband advocate for you. You chose not to have a birth plan. You chose not to be in control.

      Those were choices. My grandmother didn’t get to make any of those.

      • True enough. I doubt my husband would decide to hold such information from me because he knows me well. He knows me well. I don’t know your grandmother. I don’t know you’re grandfather. I can only say that I would hope your grandfather would be trustworthy enough to, in his love, know perhaps that she’d prefer not to know — that it would truly be better. Even if it wasn’t, I can’t say its universally wrong. It depends on the relationship dynamics. I just know clinging to control can be a great sign of distrust of others. I’ve grown a lot by letting go of control.

      • C.D. says:

        … yeah, you’re officially violating the comments policy by justifying my step-grandfather’s actions (seriously, I don’t put those guidelines up for shits and giggles). Any more comments along these lines and you will be banned.

      • kshyama says:

        This is aimed at Honestly Catholic: “I can only say that I would hope your grandfather would be trustworthy enough to, in his love, know perhaps that she’d prefer not to know — that it would truly be better”

        How. Since when is love a crystal ball? Since when is love a mind reading device? Since when is love divorced from cultural and systemic practices of the environment ‘love’ grows out of – in CD’s grandma’s case, sociocultural norms and medical policies that dictated that women are too fragile to know about their health. Tell me, in that environment, would a woman have ever been able to make a decision like that for her loved one based on how much she ‘loved’ him or how ‘trustworthy’ she was, or how ‘well she knew him’? No. And CD, in all her brilliance, is careful to state that she doesn’t hold her step-grandfather responsible but the SYSTEM responsible for creating and promoting an environment where men could make decisions for women.

        If your argument is correct – and even if it was I’d abhor this – we’d be living in a world where men are as much subject to the whims and fancies of women making decisions for their bodies out of something as socially constructed and as politico/socioculturally esconced as the concept of love – a concept so abstract that people have trouble defining it or locating it. A concept, which, in its application, is obviously influenced by whatever ruling regimes the rest of societal ‘norms’ are governed by – and therefore as susceptible to sexism, misogyny, racism, and structural barriers pertaining to these and other ‘isms’. The fact is, men’s bodies aren’t under control of women’s bodies overall – whereas looking at the gender makeup of our government today – and the sociopolitical discourses surrounding women’s bodies, including legislature, medical policies, etc, women’s bodies most certainly ARE under control of men’s.

        How can you say ” I can’t say its universally wrong. It depends on the relationship dynamics”? Guess what? It also depends on the norms and policies of the society you’re living in – and this factor matters way way way more than anything you consider ‘personal’ or ‘between two people’ or “specific relationship dynamics” because those personal relationship dynamics? they’re are influenced by societal norms of the how love is performed – the acceptable performativity of love, if I can turn a Butlerian phrase. It is absolutely universally wrong and abhorrent that we’re living in a society that has a seesaw tilt to who gets to make decisions for whom – and that tilt isn’t based on love or how well your partner knows you- it’s based on structural barriers that give men the right to violate/make decisions for the bodies of women.

    • kshyama says:

      What our body goes through isn’t our choice – but you, in asking your husband to advocate for you MADE that choice – which is great! And sometimes asking for help isn’t a bad thing at all – I don’t even see that as surrender or submission, but as asking a trusted partner for help. And you’re lucky to have had such a great experience and a partner like that.

      What CD is arguing here is that you had the opportunity TO ask for help. You KNEW what was going on with your body and were able to make an informed decision asking your husband for such help. CD’s grandmother did not have that opportunity. CD’s grandmother was kept in the dark about information related to her body, and decisions were made for her.

      Finally, a few points on what objectification actually means, as related to theory.

      Being in control of your body is not objectifying it- or if it is, it’s not in the same way as it may be linked to paternalism, but in a manner that involves a sort of meta, post-structuralist or subversive view that I don’t think you’re aiming for….anyway, objectification is a process by which some subjects, such as women are stripped of their agency and subjectivity, and conferred a passive role. Essentially, it’s when other people treat you not as a person but as an object. Here is a link that you can check about what objectification means:

      http://plato.stanford.edu/entries/feminism-objectification/

      “Objectification is a notion central to feminist theory. It can be roughly defined as the seeing and/or treating a person, usually a woman, as an object. …. Martha Nussbaum (1995, 257) has identified… features that are involved in the idea of treating a person as an object:…

      denial of autonomy: the treatment of a person as lacking in autonomy and self-determination;
      inertness: the treatment of a person as lacking in agency, and perhaps also in activity;
      violability: the treatment of a person as lacking in boundary-integrity;
      ownership: the treatment of a person as something that is owned by another (can be bought or sold);
      denial of subjectivity: the treatment of a person as something whose experiences and feelings (if any) need not be taken into account….
      Rae Langton (2009, 228–229) has added…more features to Nussbaum’s list:
      silencing: the treatment of a person as if they are silent, lacking the capacity to speak.”

      You’re also right in some ways that your body IS you (And a post-structuralist and a deconstructionist would immediately say of course you’re not) – but what that also means is that when other people make decisions for your body, they are making decisions for you. In fact, by making decisions for Cd’s grandma without her consent, Cd’s step-grand-father and the doctor objectified her, stripped her of her personhood, agency, autonomy, self determination, violated her boundaries and right to make decisions about her body and for herself, denied her subjectivity, and silenced her. You experienced none of these things because you made decisions about your body, willingly gave up control, changed your boundaries, and in asking for help, you were able to assert your voice about what you wanted for your body and yourself.

      Take care, and I’m glad your birth experience went well!
      -K

      • My views of objecitification are simple. To objectify something is to treat that something as an object for use. Its ok to treat a car as an object because it is an object. It is ok to treat a computer as an object because it is an object. But it is wrong to treat individuals, whether it is yourself or others, as objects. Love involves recognizing and responding to the innate dignity of another individual. That respect is not so much refraining from controling them, but responding appropriately to their dignity and refraining from treating them below that dignity. In many ways this means respecting their ability to care for themselves and to make different decisions than you would make. That displays a confidence and respect for their ability to reason and make judgments. But how it applies exactly isn’t as simple as the principle behind it. There are limitations to the choices we can make, and rightfully so.

      • Tori says:

        There are limitations to the choices we can make, and rightfully so.

        The right to be informed, within the context of medical practicalities, of the state of one’s own health, however, should not be one of those limitations. Full. Fucking. Stop.

      • C.D. says:

        “The right to be informed, within the context of medical practicalities, of the state of one’s own health, however, should not be one of those limitations. Full. Fucking. Stop.”

        Seriously.

        I want to take this comment, put it on a wall and frame it.

      • kshyama says:

        @Honestly catholic: This post was not about love or how much control over someone you ‘should’ have because you love them. Our personal ethics may differ on that – i say none, because that’s a ridiculous thing to do – you have some strange view of respect that entails people making decisions for someone else without their knowledge or consent. and that’s fine, let’s agree to disagree there.

        What this post is about though, is that this idea of “choosing for your partner” does not exist in some bubble outside the forces of sexism and misogyny. That is to say, in that same context CD’s grandmother was subjected to systemic factors (a medical model that did not respect a woman’s right to make informed choices about her own body, and a sociocultural model that also supported such notions), would not have ever resulted in a situation where a woman would be able to make such decisions for the man she loved, regardless of how much he trusted her to make decisions for him, or how much she loved him. This post is about destabilising those systemic barriers to women being able to make informed choices about their bodies and have those choices respected. Stop derailing the discussion by bringing this back to individual choices between people – those individual choices are embedded in sociocultural/sociopolitical systems that do privilege some with autonomy, decision-making capability, and disenfranchise others.

        Also, I gave you a really good post up there in my first comment to you that explains precisely what objectification is. It would behoove you to learn about certain words you use and not haphazardly apply your own definitions to them – these words also exist within broader sociopolitical frameworks. While you have some understanding of how objectification can work, it in no way addresses the concerns that many feminists have as to systemic – not personal! – limitations to women’s control over choices that are made for their bodies.

  5. confused says:

    Where is the commenting policy? The one that you didn’t put up for shits and giggles? I do not see it anywhere.

  6. sorcharei says:

    Parents sometimes do not tell their young children the full details and prognosis of their children’s serious medical conditions. Why? Because small children do not have the intellectual capacity to make sound decisions about their own medical care.

    The decision made by your step-grandfather and the doctor was based on assumptions about your grandmother’s mental and emotional capacities that put her in the same category as a four-year-old with a brain tumor. No female doctor and wife would have made the same decision for a husband, because no one assumes that husbands are childlike and less than fully adult humans.

    Having said that, I do know of one case where a father and male doctors chose not to share a terminal prognosis with a 30-year-old son who had specifically asked to be told if he was dying. I was 19 at the time, and made a point of telling my cousin that he could come to me if he wanted to see the letters his father had written to the entire rest of the family about his illness. So I ended up beng the one who said, “yes, it’s terminal”. But I have always known that this happened because even a 30-year-old Harvard professor will always be a 4-year-old in some part of his father’s heart.

    Treating adults as incompetent is wrong. A system that makes people think that treating women that way is normal, well, that’s fucked up beyond belief.


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