Passion, Nuts and Wise Words

I gestate humans, you do not. I know how it feels to be pregnant. You do not. I know what happens to a fetus in a womb. You do not. I have carried three fetuses to term. You have not. What I experience when I am pregnant is not empathy. It is permeability. The fetus is me. And the state is you, apparently. But, no matter what you say or do I have fundamental human rights. What makes you think that you, who cannot have this fully human experience, can tell me anything about gestation or how I experience it? Especially when you compare my existence and experience to that of brutish animals. 



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This is not about freedom of religion. If it were, we would, for example, allow Christian Scientists to refuse to pay for coverage of life-saving blood transfusions for employees. Religious freedom means I get to choose whether or not to be religious and if so, how. It does not mean that I get to impose my religion on others. Paying for insurance is part of the way we compensate employees, even when they use their insurance in ways we don't agree with and are in contravention of our own personal beliefs. I think that it is stupid, dangerous and immoral to chain smoke, especially around children whose lungs it irreparably harms. But, I still have to pay for an employee to have access to lung scans, nicotine patches and oxygen tanks. I do not get to say that my religious beliefs, which include keeping bodies as healthy as possible, make it possible for me to withhold payment of this employee's insurance. Guaranteed coverage of contraception and reproductive health care has overwhelming benefits for society, including reducing unwanted pregnancies and abortions. By inserting your religious beliefs so egregiously into government legislation and my life, you are imposing your religious beliefs on me. You don't like mandated insurance coverage for basic reproductive health humans with two X chromosomes? I don't like being bred by state compulsion like Mr. England's farm animals. I have a MORAL OBJECTION to being treated like an animal and not a human. You do not have to use contraception, you do not have to use birth control. But, that does not mean you have any right to tell me that I cannot if I choose. That is my right. 




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In an 1851 speech in which she argued for equal rights for women, Sojourner Truth said the following: "The poor men seems to be all in confusion, and don't know what to do. Why children, if you have woman's rights, give it to her and you will feel better. You will have your own rights, and they won't be so much trouble." 

--Soraya Chemaly, from 10 Reasons the Rest of the World Thinks the U.S. is Nuts

Let's call it a day

Henry, Me and Sophie, 2001

The reason why I posted this photo is that it makes me happy. It's been a wildly interesting week, albeit draining. Not only did I get engaged in a discussion with a twenty-five year old on Huffpost over cognitively disabled individuals and whether or not they are persons, human or non-person humans, but on Facebook I also fell into the Trap That Leads Nowhere of debating the traditional western scientific model versus integrative care that has worked for our family. The latter discussion was actually good-natured (although it pained me to have to interact at one point with Vaccination Militant Paul Offitt) -- and I learned something, too, given another physician's sensitive responses. The one with the Woman Whose Only Credentials for Debate on Disabled Individuals Are An Undergraduate Degree in Philosophy/Bioethics and Being the Mother of One Two Year Old was almost nauseating at first and when all is said and done, I've relegated her comments to the dustbin, coming from someone either truly evil (superstition) or sociopathic in the vein of Nazis, racists and the like. The Facebook discussion and the Huffpost back and forth were neatly tied up by the doctor I was talking to on Facebook when I told him that I'd been engaged in a far more upsetting discussion about humans, persons, and nonhuman persons or nonperson humans. His response was Tell her you need to read her thesis in the original 1930s German before you can comment further. I checked LIKE on that and moved on. Gretchen, my real-life friend and fellow blogger commented on one of my posts with a quote of Elizabeth Taylor's character in Cat on a Hot Tin Roof:  I'm sorry. I could never keep my fingers off a sore. Don't you love that? I'm always going to be one who fingers the sores, opens my mouth and types furiously. But I'm also going to be one who says, you're right, I'm sorry or Thank you for opening my tiny, little mind. It makes me want to post a photo of the inimitable Liz as Maggie: 

So, yes -- back to the interesting albeit draining week. On Tuesday night, I drained my car's battery at the lacrosse field where I idiotically kept the ignition on for over two hours, charging my phone and reading while both boys practiced. On Wednesday, I went to our huge local outdoor mall to return some jeans that I'd bought for Oliver that he had determined were "uncool," and since I was talking on the phone (speaker) while looking for a parking space, parking and then walking to the Gap, I had absolutely NO IDEA where my car was parked. I walked up and down the aisles of three different levels of the lot, pressing my automatic lock thingamajig. Did you know that they beep through several floors? I finally found my car, but not before I had shed a few tears and wet my pants a tiny bit. I'm not kidding. And then, on the way out, when I fed my parking ticket into the little machine, followed by my credit card to pay the $3.00 charge, the machine spit my card out and it fell onto the floor. I was in one of those unattended lines, people were honking in line behind me, and I couldn't open the car door to retrieve my car because I was so close to the machine. Eventually, an attendant came to my rescue and while kind, he couldn't speak English so didn't understand that my card was under my car, had fallen and couldn't get up. He eventually understood, gave me my card and I scratched off, but I wet my pants a tiny bit more. I am not kidding.

So, the photo makes me happy because I love how happy I look. I am pregnant with Oliver in the shot; our family would soon become complete; I had no knowledge of the internet and still wore a beeper, carried cash and had no friends on Facebook. 

Here's a big old door, some shit and a fly

Dutch art nouveau drawing, 1901

I've been making comments over at Huffpost in response to a recent article about the child who was denied a kidney transplant based on "mental retardation." You can read more about that here on my blog, but I won't post a link to the Huffpost chain because it's so maddening, and I don't feel like going over there and getting any more involved.

What I do want to show you, though, is one person's reply to one of my comments.

Her comment:

Assuming the family can cover the costs and are a match, yes they should be allowed to donate to their daughter, although I'm not convinced that it would be in her best interest as far as quality of life and being able to understand what and why the procedure is being done to her.  It's possible she may be put through more suffering, not less by being given a transplant

­.
As far as the broader discussion about rules relating to transplant recipient registries

­, I couldn't agree with you more.  It's not first come, first serve; in a world with a shortage of organs, comparativ
­e health and quality of life must be taken into considerat­ion, and that does include mental capacity.  One of my very dear friends lost her 13-year-ol­d daughter, while she was awaiting a double lung transplant.  Frankly, I would be heartbroke­n if I were to learn that lungs Jena could have received were given to someone with significan­tly less of an ability to live life or with a degenerati­ve condition like this.
My response (because I'm like a fly drawn to shit):

Your comments are exactly the reason why families with children with special healthcare needs often despair and grow angry. I would urge you to read some of the material written by those who do have children with disabiliti

­es and by adults who are disabled. You need to educate yourself about issues like "quality of life" and "an ability to live life" before you make such statements
­. Robert Rummel Hudson's article "Quality" would be a good place to start.http://sup­portforspe­cialneeds.­com/2012/0­1/16/quali­ty/ 
Her reply:

My goodness, when I say "quality of life," I'm not referencin

­g the ability to ice skate or not, or even the ability to hold down a job, let alone something as trivial as looks, as is referenced in first link you shared (which incorrectl
­y lists Amelia's age, by the way).  That's one slippery slope argument that is just downright silly.
When I'm referencin
­g quality of life, I'm talking about the individual
­'s overall well-being as a function of pain and symptom management­, spiritual, social, psychologi­cal, and emotional well being.  It is very possible that receiving a transplant could further diminish Amelia's quality and even length of life.  Sometimes the kindest thing is doing nothing at all, as people often chose to do for terminally ill family members
Further, there is a distinct difference between a "human" and a "person," a distinctio
­n which may or may not be relevant here, but certainly is relevant in discussion of the right of significan
­tly mentally disabled or incapacita­ted humans (like those in commas) to receive care, and the moral duty of others to provide it.  Philosophe­r Mary Anne Warren provides one of the most cited criteria for personhood­, or humanity in the moral sense:

1.  Consciousn

­ess (of objects and events external and/or internal to the being), and in particular the capacity to feel pain;
2. Reasoning (the developed capacity to solve new and relatively complex problems);
3.  Self-motiv

­ated activity (activity which is relatively independen
­t of either genetic or direct external control);4. The capacity to communicat
­e, by whatever means, messages of an indefinite variety of types, that is, not just with an indefinite number of possible contents, but on indefinite
­ly many possible topics;5. The presence of self-conce
­pts, and self-aware
­ness, either individual or racial, or both. source These traits combined comprises a "full" person, but Warren doesn't believe that all attributes must be present to consider someone a person in some sense.  "(1) and (2) alone may well be sufficient for personhood­," she claims, and neither does she insist that any one of the criteria is necessary, although she seems to believe that reasoning is both a necessary and sufficient condition for personhood­.
If we had infinite organs and resources to provide transplant
­s for those organs, then yes all human should have them.  However, we don't live in that world, and that does mean that persons have more of a right to an organ transplant than do non-person humans.
http://www

­.amber-hin
­ds.com
My goodness, did you hear the sound of that door, slamming? I'm looking through the peephole, now. Is that you, Single Dad? Help! Is that you Lisa? Help! Is that you, Claire? Help!

I'd rather read this than that

from Maurice Sendak's  In the Night Kitchen

This:


"I want to be alone and work until the day my heads hits the drawing table and I'm dead. Kaput," he says. "Everything is over. Everything that I called living is over. I'm very, very much alone. I don't believe in heaven or hell or any of those things. I feel very much like I want to be with my brother and sister again. They're nowhere. I know they're nowhere and they don't exist, but if nowhere means that's where they are, that's where I want to be."


--Maurice Sendak




That:


The company known for its progressive politics is now giving money to the Heritage Foundation, the American Enterprise Institute, the Competitive Enterprise Institute, the Republican Governors Association, the GOP firm The David All Group, Crossroads Strategies, the Republican Attorneys General Association and the Republican State Leadership Committee, among others. On Thursday, Google and Fox News cosponsored a Republican presidential debate.


-- from Google Goes Red on Huffington Post




It's Banned Books Week. 


Read a banned book or give one to your child to read for the first time.


In fact, the news is so gruesome nearly every day that I'm headed for my proverbial hills to read poetry, perhaps a copy of Sendak's In the Night Kitchen, too.