My name is danah boyd and I'm a Principal Researcher at Microsoft Research and the founder/president of Data & Society. Buzzwords in my world include: privacy, context, youth culture, social media, big data. I use this blog to express random thoughts about whatever I'm thinking.

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Schiavo, Lakoff and my wishes

When i first learned of Schiavo’s case, my first instinct was to document my desires. For the record, i don’t want to be on life support. Period. If i’m in a lot of pain, i want enough morphine to kill me. I want to be cremated. Nothing horrifies me more than living by machine, being kept alive to meet someone’s whacked ass selfish values justified through abusive uses of religion. I want to face god when the time comes, not be kept alive just because it’s possible. There is beauty in life and beauty in death – they go hand in hand and i have no fear.

So, Schiavo died today which gives me great relief. It is her turn to meet god and she should’ve been given that opportunity 15 years ago. What horrifies me is how her life has been manipulated and used by the most conservative forces for some pretty selfish gains. Of course, everything about it is horribly conflicting. The same agendas who are against universal health care are for keeping people on machines infinitely rather than letting them die in peace. Once again, we’re back to Lakoff. Yeah, it makes sense on that level, but it sure as hell pisses me off. And i’m really cranky for how much the media has taken the conservative side.

A friend of mine, Sascha Becker does a really good job of reading the Schiavo case from Lakoff’s perspective. She highlights an aspect that has been forgotten lately: Schiavo’s eating disorder and how her battle with bulimia resulted in her severe brain damage. It makes the whole situation all the more ridiculous as we’re still incapable of talking about the issues at hand – control and domination. ::sigh::

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8 comments to Schiavo, Lakoff and my wishes

  • tony

    It really makes one wonder what’s occurring right now in the Pope’s current condition. Will the Catholic church be “run” by a comatose individual,since more than likely he will not invoke his right to die? Oh,save your jokes…

  • Here’s another gendered perspective on the case that I found interesting. Via

    Three right-to-die cases have stirred the most controversy over the last 30 years: Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo.

    Is it a coincidence that all three are women who were under the age of 30 when they slipped into vegetative states?

    One bioethicist doesn’t think it is.

    Though the families of many vegetative patients – male and female – have faced life-or-death decisions over the years, the plights of injured young women are more likely to engage the public and attract right-to-life advocates, says Steven Miles, a professor for the Center for Bioethics at the University of Minnesota.

    “People say, “She needs to be rescued, she needs to be cared for,”‘ Miles said in an interview with the St. Petersburg Times.

    Miles said life-support measures on men are seen as an “assault” but with women, the technology becomes “a form of nurturing and care giving.”

    Men also are more commonly viewed as clear-thinking adults who made wise statements about their end-of-life wishes. With women, however, any previous statements they made about end-of-life wishes are more commonly blown off as “emotional utterances” that don’t have weight, Miles said. (High-profile cases share a characteristic

    I found this via Alas, a Blog while searching for the image of that brain scan.

  • Perfectly expressed, I am in complete agreement. I was shaking my head last night over comments made by conservatives (from Bush on down) talking about the need to “rein in” the “secular” judiciary. What the hell is going on down there?
    Are the 2000’s the new 1950’s????

  • Does your PhD offer you the chance for elective credit to be taken in, say, a writing course? Your thoughts are interesting but the delivery is painful. Perhaps it’s the haste in which blog posts are made. Nonetheless, thanks for writing.
    Joel

  • todd x

    Your writing is fine. Not that you need my validation.

    Question on morphine? When i was an undergrad there was a class on debate and current affairs. One of the topics was the right to die/doctor assissted suicide. If memory serves correct, heroin is far superior to morphine with respect to pain. Far less heroin is needed to stop the agony of pain — like eight times less. Which means that there comes a time when morphine can no longer dull pain, simply because there is not enough room for the amount needed.

    Which brings me to your point of universal health care and forcing machines into a persons body simply to keep their bodies from rotting, provided they are not the ones footing the bill.

    There is more, but i really don’t care to bore y’all.

  • Alex Supertramp

    Danah, I am new to your blog, reasons for finding it are probably for another day. Philosophicaly, I could not answer the Sciavo case with a simple yes or No, because the way the world works. There are two interesting reads out, relating to this exact topic. Culture of Death by Wesley Smith, Life, Liberty and the Defense of Dignity by Kass.
    Utilitarian Bioethics has replaced the Hippocrate Oath, were a Physician was to go beyond all means to save the patient, has now gone to what is more “benificial” to the Community. Unfortunately, when we start to put a value or a worth on someone life we do that for everyone.
    By pulling the plug on Schiavo, this legally opens the door for insurance companies or Medicare, etc to terminate care on a head trama victim, or elderly pt,etc.
    By pulling the plug on this woman we have removed the choice from the (I) and given the power to the (We).
    November 2,1989 I was struck by a car on foot at 55 mph. I was in a coma for 16 days and in a hopital for 1 year. The results of the Schivo case would have give my insurance company the power to yank life support, stating “I could never live a productive life”.
    I know alot of people believe in the BF Skinner Walden Two way of living, it sounds good, but I don’t. I am a firm believer in the (I) and not the (We).
    People act a certain way because they are programed by laws, customs, propaganda etc.
    People should rise above the collective, and think and answer for themselves! My answer to the Schivo case is: If her wishes were to live prior to injury, let her live. If she wished to die then let it happen, but by her choice, and only for her.
    Every single individual is entitled to life, liberty, and the pursuit of happiness.

  • this case highlights the loss of privacy, and the image, and struggle of this young lady was a total exploitation by the media.

    I understand that when one is in danger, we may temporarity forgo privacy, as is evident in things like the Amber Alert system: but this goes through a review process, before the “big everyone” capacity of the media is harnested to find an abducted child.

    In this case, two estranged parties vied for control, and hence become representative for someone who is was incapacitated.

    But this raises interesting paradoxes in regards to the “public face” that one constructs: what happens when one no longer has autonomy, and ones image and case is projected through out the media? One then needs to think how one would of wishes for ones public face to be projected, and make decisions consistant with the persons world outlook.

    This goes beyond what most would wish for and represents a form of desecration of ones body, as well as ones violation of privacy during suffering. (kind of makes me think of how sick the lenin body preservation is: but then again, there have been societies that worship mummies, such as the peruvian and egyptian societies: but where these not authoritative societies?)

    In my opinion, the courts reacted to the news agency, and did not do the right thing, which was to take custody of the case, appointing a court appointed guardian, to determine the best interest of the patient, and to reasonably protect ones dignity.

    Once her privacy was violated, the system (including the media), and the parties involved, was guilty of an aggregious form of abuse.

    whether the artificial feeding should be discontinued, or continued, is a private matter. There are reasonable persons who could look at her perspective and determine the best course of action via an ethics committee: the parents and the husband did not have her best interest in mind when no effort was taken to reign in the publicity by requesting a gag order. My god, her cat scans where on the internet: WHO RELEASED THAT?!

    This is not clinical sousveillance: this is surveillance systems being integrated into medicare algorithms that ration healthcare, through the well distributed manner of milgramian social control systems.

    It also demostrates the limitations of todays judges and lawyers, who maintain an income generating system that is supporting a legal industry, subverting the need to maintain a constitution, but worse, the very human need to have justice.

    Justice collapses in totalitarian regimes, just as privacy does.

  • nancy

    I watched and sat at my mothers bedside as she died from the effects of smoking for many years and I cried wishing she did not have to die such a horrible death. She was drowning in her own fluids. In her more lucid stage I asked her if she was ready to die and she said ‘yes’ so calmly I wanted to scream at her. So, instead of waiting for the doctor to unhook the ventilator, she did. And she died. With dignity, in pain and knowing that she was indeed going to her God. What are all of us afraid of in death? Of the pain, the indignity of having to have someone else do for us like change a soiled sheet, or are we just plain afraid that our choice of who we believe in is wrong? My mom wasn’t afraid; just before she went completly into her last slumber, I asked her if anyone was waiting for her in the room. She nodded yes and pointed to figures I could not see. She unlike Terri made the decision to let go, not a doctor, lawyer or Indian Chief. She did not give up her right to die or ask for help to do so through assissted murder, she faced it head on and went to God.