Fixing Chariots

Sophie has a wheelchair that we received after about nine months of wrangling with the various agencies and insurance companies. It cost just under $10,000. All the paperwork is in a file that I labeled Sophie's Chariot.  Yesterday, I spent about thirty minutes trying to thread one of the straps back in so that she could be secure. I used tweezers. I fixed the Chariot.

I had an interesting discussion on Facebook the other day on a thread responding to Florida Senator Rubio's assertion that he wouldn't support abortion for those fetuses affected by the Zika virus. Since I've basically weeded out or hidden all my "friends" that have right-wing viewpoints (in the name of sanity during an election year), the comments were predictably liberal-minded with much derision toward Rubio. Given that the man also believes that a fetus should be carried to term even if the woman has been raped or in cases of incest, I was not surprised by his vehement response.  I should make my own assertion here that I am, of course, utterly "pro-choice" and do not believe anyone has the right to tell a woman what to do with her body, including the fetus, should she become pregnant.

Marco Rubio can go f*&k himself before telling me about the sanctity of life.

Where I get squirmy, though, is the talk about aborting children with microcephaly.

This is a post about some squirmy stuff. I don't want to argue and will just present what I'm thinking about when I hear people talk about Zika and microcephaly and abortion, and before there was even knowledge of Zika, these would have been the same thoughts regarding abortion and any sort of disability.

Again, I am decidedly pro-choice and believe unequivocally that it's the woman's right to make decisions regarding her body and that, should she make the decision to have an abortion for whatever reason, she has full and equal access to the procedure with her doctor.


Here are a couple comments from the Facebook thread:

• So. He's planning on putting through legislation that ensures these children have life-long free medical care, schooling, aides, wheelchairs, dental and all things they will need for the next 50 plus years, RIGHT?
• In that case, little Marco and the so-called "pro-lifers" should adopt, raise, and continue to support indefinitely each and every one of the severely handicapped children that are born of Zika-infected mothers.

My first thought is how everything -- literally everything -- is reduced to economics -- or how should I say it? -- worth and value. These children, born of women infected with the Zika virus, are not just a great burden to their families but also to society. This kind of reasoning reminds me of how people argue against the death penalty by stating that it's "more expensive to kill people than to house them in jail for a lifetime." Again, I'm just throwing out some of my thoughts here. 

What if we shifted the whole paradigm and asserted the primacy of the vulnerable, how the disabled bring a certain light to the world and evoke the best in the rest of us. I'm not implying that there's a reason for suffering, a plan or some sort of divine imperative. I don't believe in God that way. I believe more in chaos and, perhaps, meaning wrought from it.Sophie is not here to teach me through her seizures and silence, but I am here to learn what it is to truly love.



Here's another comment:

Anybody ever tell these 'interventionists' about the kids that won't be born, because the one they compelled to be born will take the time, energy and finances of the potential kids a couple might have had, were they not over-burdened with the deformed child an abortion could have prevented? Seems to me, there are more potential children condemned to "death" than the fetus the anti-abortionists insist on bringing to term.

Cartoon thought bubble:

Hard as it might be to believe, over the last couple of decades, I've had several people ask me whether I would have aborted Sophie had I known she would have refractory epilepsy and severe developmental disabilities. The hard to believe, for me, is the audacity of the asking, not the answer. I have learned to literally live the questions and not the answers. I have no answers. I've said it before, but I hold opposing thoughts and ideas at once. My hands, you know, are large and strong. When I was pregnant with Henry, I declined an amniocentesis because I already knew that we never know. I was thought a fool by those who advised otherwise. Fools never know. When Sophie was diagnosed, I mourned for what seemed like lifetimes. I mourned the loss of the baby that I thought I had carried and then brought into the world. I thought that she had been replaced by a new baby until I realized that she, Sophie, was always who she was, had been so since spark and stardust and love created her. The mourning never stops, but neither does the love.

Remember hands, how much they carry. It is both terrible burden and incredible honor to care for Sophie. I couldn't do it again and I'd do it again, And not but.

Waxing Gratitude (with profanity)

*

I kind of winced around all day because of my previous post where I used the f word and waxed righteous about a woman's right to have an abortion. I was responding to the Reverend Promise Dixon's righteousness, but everyone knows that you shouldn't talk about abortion or anything else that so polarizes people because there's just no end to it all. No end to it at all. I've been trying to be still in my heart these days, to not jump down throats or to stir up controversy or to mouth off like I am accustomed and, dare I say it, quite good at doing.

We often stir things up that are unrelated to us when we're facing difficult issues in our personal lives as I am. So, I'm going to be popping in and out of here, periodically mouthing off but probably more likely waxing my gratitude for my community and friends and family.

The Reverend Promise Dixon can still go f*^k himself.








*I posted that photo of Sophie on Facebook and just had an enormous amount of love sent my way, so forgive me, Facebookers, for double-posting it here as well.

The Day After International Peace Day Contains Profanity

It's the day after International Peace Day, so let's rant.

I get at least three emails every single morning from various marketers, peddling products and services as diverse as stand-up urinals for women and books catering to those who believe in manifesting your destiny even as you're swept away in a flash flood in a keyhole cavern. Today's email, though, got my proverbial panties in a wad (I hate the words "panties" and "wad," but some self-flagellation is in order for my upcoming rudeness). This email was promoting a singer named The Reverend Promise Dixon, the 10th of 14 children from Oklahoma. He has a new song, Killers, that addresses the recent Planned Parenthood conspiracy, and the marketer hopes I'll listen to and tell ya'll about it. Normally, I'd delete this kind of thing immediately after seeing that it's evangelical Christian (how in Buddha's name do these people get my email?), but I kept reading until I reached the final paragraph where I promptly burst out laughing (as opposed to combusting which I'm sure the Revered Dixon would have preferred). Here's the last paragraph of the email:

When people talk about Planned Parenthood, it is most often discussed from the perspective of a woman.  Rev. Dixon says that his song sheds light on a different perspective; “This is a unique story, because you always hear about the woman's perspective, but never from the perspective of a man, who actually paid for the abortions.”  It is Rev. Dixon’s hope that through his song, people will be awakened out of complacency and into action.

Here's the action I'm awakened into, Rev. Dixon. Go f*#k yourself.


Anywho.


Speaking of music, Oliver was walking around the house this morning humming bars of "Ebony and Ivory," although he was using different words. I made the mistake of correcting and telling him that the singers were Stevie Wonder and Paul McCartney and that it was about racial harmony. Oliver rolled his eyes and said in his most incredulous fourteen-year-old tone, Have you ever even heard of that song, Mom?

Camera Wands and Woody Allen

Women's business

First of all, I want to warn you that the following post, flying from my fingertips, is not going to be about disability. It's not going to be about how we do it except for the fact that I like to go to movies when I'm feeling on the edge, and today I skated right near the edge when I went for a pelvic ultrasound to check on what I'll call, here, women's business. I thought I was going to lie back on the examining table in a dim room and patiently allow the technician to first smear that cold jelly on my stomach and then run the little -- what do you call it, anyway? -- over it, searching for my uterus and all the lovely things that lie within. I've had three babies and more than three ultrasounds, so that's what I was prepared for, and that's what Claudia, the thickly-accented technician did to me. Lest you think I've suddenly immaculately conceived one month before my fiftieth birthday, I'll clarify that it was a bit of women's business that I was checking out that pertains to that fiftieth birthday and all the birthdays that will follow my half century mark.

 What I hadn't planned for, though, was the foot-long white wand that Claudia held over me after she gave me a towel to wipe the jelly off my stomach. She fit what appeared to be a condom over it and then explained to me that I would put the wand into my women's business. What? I asked, not quite understanding. There's little camera at end, and you will put in vagina until it goes to here, Claudia showed me a shortened bit of the wand, and I did as I was told. I lay there on my back as Claudia waved that wand all over and inside my women's business, taking what seemed like hundreds of photos, and it was most uncomfortable and perhaps even a bit humiliating and all I could think about was those southern states who have passed laws or tried to pass laws requiring women who are planning an abortion to have a trans-vaginal ultrasound.

Holy shit and shame, shame on them -- a million times over.

After being wanded, I decided a movie was in order and fled to the mall to see Woody Allen's Blue Jasmine. I love Cate Blanchett, and I love Alec Baldwin and I periodically love Woody Allen's movies, so it seemed like a good way to get over the wanding and whatever might come of the wanding, because it's really only in a movie, in the dark, in the theater, that I truly escape.

So, there's the how we do it part of the post.

Let me tell you, though, that I hated that Woody Allen movie, and it left me nearly in tears and more anxious and agitated than I've felt in a long time. It's a clever movie, like most Woody Allen movies, and Cate Blanchett is exceptional in nearly every way. It's even funny, here and there, but the humor is bitter and cruel and reminded me, again, of what I hate about Woody Allen's sensibilities. I honestly believe that he masks his own personal ugliness (both figurative and literal) with glamour and wit, and while I am often seduced by that, I wasn't this time.*** I felt slightly sick by the end, and I felt empty. This time, I found my car very quickly in the parking lot and burst out into the California sunshine, grateful that a movie is just a movie. 

Marking my spot

Twice invaded today -- by a wand and a Woody -- and I am going to take a long, hot shower. Then, I think I'll curl up this evening with Madame Bovary and a shot of bourbon. Because that's how I do it.











*** Three jokes in the movie -- about epilepsy, the word retarded and electroshock therapy referred to as Edison's treatment -- and the laughter in the audience at each did much to send me right over the edge upon which I was skating.

Another Episode of

Gosh, dang. It's been ages since I've done a Smells like Bullshit post and got everyone all riled up. The truth is that I don't feel too riled up anymore -- maybe all the meditation is working or maybe I've grown cynical and hopeless or maybe I just don't give a damn. I do read the papers or, at the very least, skim the headlines and I've noticed that there's a whole lot of bullshit going around. Like today I read that you can't buy a Glock pistol at a Starbucks in Nevada, but you can carry one. Those Nevadans sure are taking steps to keep themselves safe and free. I also saw that North Carolina, that most beloved of states where I spent four blissful years in college and then two afterward, is now controlled by an all-Republican Congress and Governor -- for the first time since Reconstruction! When I exclaimed over that, even Henry said, Mom! That means since the Civil War! I guess his public education here in Sodom and Gomorrah taught him history, if not values. And speaking of values, the fine folks in North Carolina running the show are quickly shaping the state up to rival even Mississippi in its strict control of women who might dare to own their reproductive freedom. There's apparently a fever in Conservative Land of one-upmanship as the grand state of Texas is evidently poised this very moment to pass some of the strictest laws in the country against baby killers like ourselves. That freedom-loving bombshell of a woman, Sarah Palin, is going to run for office again, I read somewhere. Oh, and my home state -- Georgia -- is fixing to kill a "mentally retarded man" any moment, now.

I don't know about you, but the only solution to the smell of bullshit is a nice shot of frozen vodka.

Down Syndrome, Comments, and Fellini

Allison Piepmeier, a brilliant academic writer friend of mine, and the mother of the incomparable Maybelle, had a piece published in the New York Times'  Motherlode column a couple of days ago. Allison wrote the piece as a response to the recent law passed in North Dakota outlawing abortion for fetal conditions such as Down Syndrome. I won't review what she said, as the piece is short, and I'd urge you to read it yourself, but what has stuck with me in particular all day long are the more than 200 comments that I made the mistake of skimming through after reading Allison's intelligent words. Filled with vitriol -- on both sides of the abortion issue -- they are, with few exceptions, some of the most ignorant and upsetting opinions and viewpoints that I've read in a long, long while. They are the stuff of depression, the stuff that drives some of us in the disability world to want to retreat into caves, overwhelmed at the prospect that no matter how hard we try, we may not ever fully engage people into valuing the lives of people with disabilities. Full inclusion might never happen, our children and fellow citizens might continue to be commodities, burdens that inhibit productive life, argued over in the marketplace.

I'll say here that I am particularly repelled by Dakotan lawmakers who have passed some of the most draconian laws against women's reproductive rights in the country, but I am also disturbed by those in the disability community who champion the law as, somehow, a victory for the most vulnerable. I have been asked the infamous question about Sophie and abortion -- whether I would abort her if I'd known what would happen. To this question, I will only answer that it's impossible. It's impossible for me to answer this question. I am who I am because of my daughter's strange journey on this planet, and I am who I am, living questions, not answers.

And now let me retreat to my cave. I'll be watching this:

The day after the day I rested

I dragged myself out to Pasadena this morning and began the proceedings to formally divest Sophie of her rights as a self-determined individual and become her guardian. I am, evidently, a "self-represented litigant" in this process and had the great fortune to be referred to a wonderful organization that will help me along the way. I filled out the beginning paperwork this morning while coughing discreetly into my upper arm and felt almost grateful for not feeling fully up to snuff. Had I been my usual feisty and iconoclastic self, I might have had reason to see irony in every sign that crossed my path and every box that I checked. Should I check YES or NO as answer to the question Does conservatee wander and get lost? Or how about Is conservatee confused and forgetful? We won't even get into Is conservatee able to make decisions about his or her sexuality? I thought for a split second about the women in North Dakota and Mississippi, and how their rights to reproductive freedom are not just being chipped away but, rather, hacked at the roots, while an hours old embryo is perhaps going to be considered a person there. Way to go Mississippi and North Dakota -- so very advanced of you. Such is the way my mind generally wanders and it might have been for more than a second if I hadn't felt so run-down from this dang virus. In any case, I finished my appointment and then drove back home where I walked around in circles in my house for a few minutes and even attempted to reach Medi-Cal for direction regarding Sophie's Drug Acquirement Troubles. If you can believe it, when your identification number has a LETTER in the string of numbers, instead of just pressing the corresponding number on the phone you have to do this convoluted thing where you press STAR and then the corresponding number and then STAR again and then a number that says which number the LETTER comes on that button. I'm not kidding you. That's what the lovely Medi-Cal voice tells you to do, and you know what? I couldn't figure it out. I started to cry a little and then giggle a little and then I realized that I need to get back into bed and watch some more episodes of House of Cards. So that's what I'm doing.

Who loves ya?

So what I think these comments do underscore is why we shouldn't have a bunch of politicians, a majority of whom are men, making health care decisions on behalf of women.

-- President Barack Obama, on recent comments by Republican Representative Todd Akin about rape 

Yeah, yeah, I know Obama making this statement so publicly is about politics, but when Truth is stated, it bears repeating. Over and over and over and over. In this case, I'm grateful for the extrapolation from the POTUS.

Although these particular comments have led Governor Romney and other Republicans to distance themselves, I think the underlying notion that we should be making decisions on behalf of women for their health care decisions, or qualifying forcible rape versus non-forcible rape, I think those are broader issues,

Now, I'm going to mull, again, over those who would support Akin's candidacy at this point. And then, I'm going to venture toward wondering why any woman would vote for a Romney/Ryan ticket. Looking on the bright side, I imagine my brain will get a good enough work-out to ward off dementia.

Akin was Paul Ryan’s co-sponsor on a House bill just last year banning the use of federal funds for abortion except in cases of “forcible rape.” This term seemed laughably redundant since all rape, by definition, is forced. But this redefinition of rape was deceptively sinister. Statutory rapists often use coercion but not physical force. If the measure had passed, a 13-year-old emotionally manipulated into having sex with an older friend or relative would no longer be able to use Medicaid to terminate a resulting pregnancy. Nor would her parents be able to use their tax-exempt health savings fund.

from The Danger of Laughing at Todd Akin by Ilyse Hogue in The Nation 

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. 



...


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. 




....


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

More paradox, sex and politics and witches, but no rock and roll or drugs

Examination of a Witch, in Salem, Massachusetts, 1692

Your modern Republican Party has decided that a one percent increase in taxes for multi-millionaires is an impeachment-worthy high crime, but the state-mandated insertion of an electronic device into the vaginas of women who are ostensibly struggling with the most difficult moments of their adult lives is a perfectly acceptable exercising of government power. 

-- Bob Cesca

What does it say about the college coed Susan [sic] Fluke, who goes before a congressional committee and essentially says that she must be paid to have sex? What does that make her? It makes her a slut, right? It makes her a prostitute. She wants to be paid to have sex. She's having so much sex she can't afford the contraception. She wants you and me and the taxpayers to pay her to have sex. What does that make us? We're the pimps.

-- Rush Limbaugh to his 15 million strong radio audience

Shame on You, State of Virginia with an addendum

When I lived in New York City many moons ago, I remember there was a news segment on the nightly news called "Shame on You." There was also a pretty racy soft-core porn show on network television at 11:00. I was grateful when it went off the air, if for nothing else than its outrageous tackiness. It was downright bad. The Shame on You segment was really funny, though -- produced on the fly and always featuring some loser who had tried to shirk the law or done some egregious deed.

Anywoo.

The legislature of Virginia just passed a bill that would require all pregnant women seeking an abortion to have an ultrasound 24 hours before doing so, to ascertain the age of the fetus. The big Repubs who pushed this through (after backing off their requirement for a trans-vaginal sonogram) call it necessary for informed consent, because you know they do have the woman's best interest in mind and as of this moment, the law dictates freedom of choice.  Republican Governor Bob McDonnell is expected to sign the bill into law.


I say, Shame on you, State of Virginia. Shame on you.


Addendum: I'm inspired by a couple of the comments, already, and I wonder whether you might contribute your ideas for intrusive medical procedures for unmarried men before they consider having sex with a woman. And yes, I realize this is a very complicated issue and yes, I realize that people are genuinely offended by and disagree with abortion morally, and yes, it's a free country and we're free to disagree, but no, I'm not mincing words when I say shame on all those who fight tooth and nail to dismantle freedoms afforded to women. My response will be bitter and scathing satire at best. At worst -- well -- I won't say it in public.

Pioneer Woman and homeschooling

Heather Sanders wrote an interesting piece on Pioneer Woman's blog the other day about homeschooling and recent comments made by Rick Santorum. Why, you ask, am I reading a homeschooling post? Well, I read Pioneer Woman's blog like ten million other people in the universe do, and yesterday I accidentally clicked on the Homeschooling tab instead of the Home and Garden tab, and it just caught my eye. I read the post, which was interesting, but then I started scanning the comments and got a sense that yes, there really are people out there who like Rick Santorum and don't think he's a crazy and they even have names and blogs and I could "talk" to them if I wanted to. There are literally hundreds of comments on that post, comments that quickly veered away from the topic at hand -- homeschooling -- and dug deep (or shallow, I suppose) into religion, birth control, women's roles, abortion, evolution and all those other topics that strike fear into the heartland of our privileged country.

Yikes.


This is some scary stuff for left-wing, communist, socialist, gay-loving, elitist, phony theologist, environmentally radical people like ourselves.