Twinkle Little Star

The Post About the Menz

aka The post that will probably get me into a lot of trouble.

My sister and I were talking the other day about how she still gets (and I used to get) all of the questions about WHY doesn't she have children? I mean, its not like its the law that every woman should want to have children, right?

But this made me think of a question I still get, especially since having children and the lead up to children. "Why aren't you married?" Or, "When are you going to get married?" Or "Why don't you want to get married?" Just today I had lunch with J, who is in his late 40s and in luuuuv and engaged to get married, despite the Pacific Ocean that separates him and his fiance. I am very happy for him and I really enjoyed spending time with him today. But then the subject of my state of marriage came up and I did one of my tactless blurt outs:

"Men are 90% useless when it comes to relationships."

Yeah. I don't have issues.

But I kinda think I really don't. This is an academic issue for me and I'd like to qualify this statement. First of all, to prevent any confusion, D and I really do have a BIG insurance issue standing in our way. So marriage to him is beside the point. However, and I love D and he is family and I've said this before, I don't know that I'd marry him anyway because I just simply don't want to be married. Our relationship works on many levels, much better than some married couples I'd say. But one of the reasons it works is because we have so many mitigating issues surrounding disability and how we have to live to meet both our needs that it overrides some other big issues. Just for a really simplistic example: D and I don't fight about who does the dishes, who diapers the kids, who makes dinner and who vacuums because he can't do it anyway. It's irrelevant.

I'd like to think that if he could, he would be completely enlightened and he would see us as 100% equal partners and do all this stuff without question. But chances are good that he wouldn't, at least initially. The way he was raised, using his brothers as examples (which is not totally fair, but that's the little I have to go by) they are entrenched in patriarchal thinking. Male privilege. To D's credit, I think if anything, disability has enlightened him to what it feels like to be treated as subhuman, and has opened his mind to learning about the issues women face. So, it is a bit of a catch-22. If he wasn't disabled, he might be a bit of a chauvinist and not treat the partnership equally. But since he is disabled, he understands these issues that are important to me, but many times can't demonstrate it in concrete ways. But one of the things I most love about D is that he doesn't base his ego on stupid testosterone induced male pride and get all hung up about it.

But back to the usefulness of men. What I meant to say, and not that this is much better, but anyway...90% of men are useless when it comes to relationships with women. And of the 90%, there is certainly a continuum of usefulness. Many men of my generation might be in the top 20% of usefulness, while men of the older generation are perhaps lower on the scale, just based on different generational views and upbringing regarding women. So, what I am actually saying, is of the bell curve of men's usefullness in a relationship, my criteria to even bother with trying is only the top 10%. And by top 10%, I don't mean the top ten in traditional ways, like best looks, most money, most prestigious career, whatever. I mean in their usefulness as an equal partner, respectful, loving husband, kind and generous, conscientious, responsible, mature, honest, courageous, etc. Those kind of things.

Okay. I am FAAAAAR from perfect, but I always said that any guy I would marry had to have his shit together at least as much as I do in these areas. And it always seems to me that that only leaves the top 10%. Arrogant, much? I know, I know. But what I'm getting at here is that I don't consider myself to be in the top 10% of women in these areas. I'm probably just average. What I'm getting at is the discrepency between men and women that I don't want to put up with.

I know. I'm digging myself into a deep pit.

But come, come join me. Let me throw you a shovel. I will also qualify this to say that I have many male friends who I quite enjoy and some who I love dearly. I see their humanity and all their good points and things they have to offer. Besides D, of course, I love his dad, despite our differences. I love my first boyfriend, Kory and always will. I love Nik. I love J. But to enter into a lifelong commitment and equal partnership? There are very few guys out there who could pull off the kind of partnership I want. A patriarchy free one, as much as possible at least. Very few men are up to snuff to  make it worth my time and effort. I know that sounds just like the "I don't think all blacks are bad, I have a friend who is black." line. I do understand that it is an unfair statement to generalize all men in this way. And I don't feel like I am doing that so much as observing a social trend that affects both men and women.

In fact, J must be my special special. I must love J so much because I held my tongue and even coughed up a "well, there might be a grain of truth" to his example of that asshat quack John Gray and his stupid Men are from Mars, Women are from Venus drivel. Did you know he isn't even really a doctor? His stuff is misogynistic crap that basically gives men a "biological" excuse to be pigs. Here, for your entertainment, some great John Gray quotes:

"It's such a big deal, 'Well, I didn't get my 20 minutes of clitoral stimulation, so how can you think about penetrating me?' This is all feminist stuff that came in, and women are brainwashed with that. They should have it. I'm not against that. Women should have great sex. It will make better marriages for men."

"Does one spouse owe the other sex? The man goes out and risks his life for this woman. The man works hard for his family. What does she do for him? She has sex for him whenever he wants. That's what sex was. Sex was always for the man. What's this sex for the woman thing?...It's takes 30 minutes [for women] to have a real sexual experience. How do you have sex for 30 minutes every day in a busy life with kids? You don't. But you can do two minutes whenever the man wants."

(From an interview with Yahoo! Internet Life Magazine.)

No wonder his wife left him. My point is that I don't think the trend of men being worthless in relationships is in anyway inherent to the fact that they are men. I don't think it is in their DNA, I don't think men are useless in relationships in any way because they are inferior to females. I recognize that there may be some biological differences between men and women, but more and more research supports that the differences are minor. We are not from different planets, so much as we perhaps just have a different dialect when speaking the same language.

I think that men tend to be useless in relationships because for thousands of years, they had no expectations to live up to. Or very few in regards to accountability to their relationships with women. Women were property and thus could be treated as such. How men treated their property was based entirely on his prerogative, not on her rights or her humanity. Has this gotten better? Absolutely. But thousands of years of patriarchy does not go away overnight. Women have been forced to set their expectations low and men have have been entitled to basically do as they pleased. It is so ingrained into our society that we don't even see it without a trained eye.

So, I call myself a feminist, which for the record, doesn't mean that I feel women are inherently better than men, nor should women rule the earth. Shannon does a remarkable job illustrating my view of feminism in this post. It is about recognizing the humanity of everyone equally while understanding that we are not identical with identical needs. But this won't happen unless men take responsibility for their actions and women expect the respect they deserve.

Here is where people are going to write to me and tell me how mentally screwed I am, or (and I always love these, cuz they prove my point) where someone inevitably comments that I just need a 'good fuckin'. Because of course, when a woman has an opinion that deviates from her requisite dire need of a man, she must just need to get laid.

But here we go: Nothing illustrated the patriarchy and its cruelty to me more than after I was raped. I haven't talked about this much because I really don't want the guy to find me, nor do I want to open up myself to the criticism that always follows rape victims, but here is the story in a very abridged (cuz gawd, I'm sick of this story) and somewhat disguised version:

College. Never heard of the term date or acquaintance rape before. Very, very young. Got a university sponsored ride from a university employed driver (along with several other students) to the airport, two hours away. Talked to the driver the whole trip, a fellow student several years older than me. Nice guy. Perfect gentleman. Went above and beyond the call of duty making sure I got to my flight on time and helped with my bags.

Two months later. At a BYOB frat party with a friend. She wants to make a booze run, we are underage. She asks me if I know anyone at the party who can do it for us. I (barely) know the driver guy. He takes us for a booze run. My friend drinks, leaves with another guy. I don't drink, or drink very little. I'm not drunk. Getting late, driver guy asks to drive me home. Okay. Drives me to his dorm. I don't realize this (cuz I can't see) till we are out of the car and going up the steps. I realize it, I still go in with him. Sit around talking with a bunch of people in this guy's room. One by one, other guys and girls leave. We are left alone. We kiss. I (SUDDENLY!!, cuz I'm dumb) realize that he expects to have sex. I get up and say I don't want to have sex and head for the door. He apologizes. Sweetly. Convinces me that I shouldn't walk home at 4am (the danger!) and he is too tired to drive me home. He convinces me to stay to "just sleep." I stay. I fall asleep. I think I slept about 15 or 20 minutes and am awoken to him pinning me down and the rest I will spare you the details of.

So, my story is typical. You've all heard this type of thing before. We all know a girl who this happened to, right? And we all can see, with our aged wisdom and experience, the 300 things I did wrong to get myself in that situation. And I was naive. But here is the deal: The thing I did wrong, the thing that put me in the most danger, was in believing that my personhood would be respected. I believed, up until the very last second when I was physically overpowered, that I had complete control and autonomy and SAY in what happened to me and what I agreed and did not agree would happen to my body. Obviously, I was mistaken.

What was worse than that night was the reaction I got afterword from the few people I told, both men and women. It ranged anywhere from "how slutty of you" to "well, that's too bad, but what were you thinking???" Basically, the general attitude from everyone was, "well what did you expect when you voluntarily went and stayed in his room?"

Well, wild as this might sound, I expected to be respected. I expected that I would have a say in consenting or not consenting to any and everything that went on that night. When I thought about prosecuting, the main thing I heard about was how I was going to ruin HIS life. Basically, expectations were extremely high for me to monitor my behavior, but nonexistent for him to monitor his. I was supposed to respect my impact on his life but he was not required to respect his impact on mine. Thousands of years of entitlement and low expectations. This had nothing to do with him being from Mars. This was about misogyny and the lack of percieved humanity that I had as a woman. (BTW, I think it was Nik, five years later, who was the first to call bullshit on that line of reasoning and name it 'date rape'. Thats only one of many reasons he rocks.)

Now I do realize that this is an extreme example and most guys are not out there raping people. But even those who won't go so far as rape still carry these attitudes. It is everywhere. Men (and some women) seem to be very confused about rape. This is the litmus test:

At any time, at any moment in any situation, and no matter how she got there, a woman should be able to voluntarily get up and walk out of the room. Even if she consented to sexual actions, even THE sexual action and even if they are in the middle of doing THE sexual action. I'll even spot the guy a ten second reaction time. But at any moment, no matter what she was wearing or what she said or did, she should be able to stop what is happening and walk out of the situation. Now, I'm not saying the decisions she made that got her in the situation were good ones or wise ones or even nice ones, and the guy is free to end the relationship with her if he doesn't like her decisions. However, he is not free to rape her. End of story. Is this so damned hard to figure out?

So, take Kobe Bryan. His situation happened almost 15 years after mine. And I use that situation because it was similar to mine. The girl kinda liked him, she voluntarily went into his room, she might have consented to some sexual acts, and then she did not consent to others and she wanted to stop and to leave and was not allowed. Tons of men, men who I know were not bad men, men who would never rape anyone, said things like, "Well, she should have never gone into his room." Or, "she confused him by consenting to this and not to that." Or, "how was he supposed to stop? Guys get to a point where they can't stop." Or, " She is going to ruin his career." Her identity was leaked numerous times by the press. She received death threats. She was made into a villain. It was "blame the victim" at its worst.

Rape situations sometimes really illustrate how far we haven't come as a society in our ability to see woman as humans rather than objects and property. The standards for men's behavior are so low, and women have to sacrifice SO much sometimes to have a relationship with a man, it is very hard to find truly equal partnerships.

Most of the time, the low standards are much more benign than rape, of course. It is the guy who comes home from work and sits on his ass while the wife makes dinner, cleans up, gives the kid a bath and puts 'em to bed. Or the guy, like the uncles I grew up with, who grouch, "Woman! Get me a beer!" Or it is the husband who agrees to fix the broken stairs a month before the child's birthday party and then doesn't. Suddenly deciding to get his power tools out DURING the party. (True story.) Or another true story: Mom has been working on potty training junior. Asks dad to put off re-tiling the only bathroom for a week until the kid is back in daycare. And he up and rips the bathroom apart while the kid is home all day and has his first day of big boy underpants. Or (another true story, I read too many blogs.) the husband who spends all of his non-working hours playing Second Life on his computer having cyber sex while lying about it to his wife. He completely does not understand why spending his time having virtual sex with a real woman online instead of spending time with his family might be upsetting to his wife. Or the guy who skips his autistic kid's long awaited referral with a specialist to go to a Ferrari convention. Or it is the husbands who think that they work all day while the wife doesn't work. Or gets upset if the wife makes more than him. Or (in phony Ph.D and divorcee John Gray's case) the husband expects the wife to drop everything to give him a quickie but never seems to have time to return the favor. Or calling the type of intimacy that delivers the orgasm for women "foreplay"--an optional precursor to the MAIN EVENT! --the part where the man gets his. I hear about this shit every day and I never understand why women put up with it. Is it just because we have such low standards? Is it the necessity of economics? The exhaustion of raising children alone? How do we get out of the cycle?

There are just a thousand little ways that men don't have to measure up. It is deeply embedded in our society. It is the invisible backpack of entitlement that men carry and women almost don't recognize. And to some extent, men are victims of it as well. I think in the majority of cases, it is entirely unintentional on men's parts. It is for them probably like being a well-intentioned white person who doesn't see their own privilege and sees themselves as being colorblind. Men are often raised this way. It is in every aspect of our culture. Just last week I was lazily folding laundry while watching General Hospital. A successful business woman gives up her career and surrenders to the seduction of a man who is a mob boss (and a 'good guy'!) and can't guarantee her safety, yet won't give up his lifestyle so that his girlfriend and children won't be killed. I know its a soap, but this is still acceptable as romance today? They even had the protest-protest-protest-surrender kiss scene. Un-fucking-believable. Its everywhere.

I also recognize that women aren't perfect and often contribute to this by playing right into it or have a "if you can't beat 'em, join 'em attitude". My MIL's generation is full of master manipulators. And I think some women have learned this as a survival technique. If you can't gain power by money or brute strength or position in society, then you manipulate to get what you want. Women are taught from birth how to do this. How to use their bodies, how to trick men into getting what they want. Venus and Mars are all about manipulation. Oprah and Cosmo have articles about how to get your man to do what you want them to do by playing to their ego or sexual desires. Girls are told that the toys they should want at Christmas time are play kitchens and dolls and ironing boards and princess costumes and dolls heads to put make up on. Boys get heavy machinery and superheroes and footballs and toy swords and violent action figures. Toys that focus on power and strength. We are still, in 2007, taught from birth that men are powerful and do important things and women are here to be pretty and clean up after the men and their children.

Although we can't totally reject the patriarchal notions that have been driven into our brains from birth, like we can't really be totally cleansed of the racism we were raised with, we can recognize it for what it is. And here is where the great guys come from. They are out there. They are the men who recognize what is going on and conscientiously work to make sure that they are acting in ways that are not contributing to it. They recognize the humanity and worth of women and don't play stupid Mars/Venus games or act entitled to sex or beauty or a hot dinner waiting or a clean house. They understand the difference between making love and just getting laid. And they understand that the patriarchal bullshit is ingrained in them and will never really go away but they will do their best to try and minimize its impact on their lives and the lives of the women they love. They are out there. I know some of them. They are the 10% that are not useless.

And unfortunately for the most part, they are married. I think they all got scooped up by the woman who were self confident and expected to be treated with respect while girls like me were guilt-tripping ourselves with our misplaced culpability in our own rapes or were being self-conscious about our blindness or our fat or our zits or whatever. I admit it, I was too busy being a victim of the patriarchy (and wallowing in my victim hood) to get one while the gettin was good. Or I got too old and too set in my ways to want to train one in, and the trainable ones are too young for me now.

Yes, now I know I'm an old spinster at 37. And I'm not allowed to like it. But I do. I like my autonomy. I like living my life on my terms. I like not having to play the Mars and Venus game. I like that I can set my own standards as to my personality and standards and appearance and not have to play into guy expectations. It seems like you either have to compromise your standards or choose to be single. I like my choice.

Yes, I know. My standards are too high. I hear this all the time. My standards are too high if I want an equal relationship with a guy who understands and supports feminism and human rights. If I want a guy who not only refrains from saying "I'd hit that" but who doesn't cheer along when his buddies say it. If I want a guy who is not insecure around a smart or successful woman who doesn't feel like her main job is to feed her husband's ego. If I want a guy who can sit down with me and negotiate a conflict in a direct and amenable way for both of us and not let his entitlement or ego get involved. I know that no one is perfect, but I would want a guy that at least understands what an equal relationship is and does his best to strive for it.

I really don't feel like this is sour grapes, this isn't an uptight woman that needs to get laid. I can get laid anytime I want, as can most women, so I never understood that whole line of thought. This isn't a bitter old maid that is making excuses for not having a husband or a lesbian wanna-be or whatever else I get accused of. I do not hate men. I understand to the extent that I can that they are under their side of the patriarchal pressure as well and it can be hard to impossible to see above that. I see the good in men. I enjoy their company. I have many that I love and admire and even lust after a few (Okay, that guy Logan? On General Hospital? He is the only reason I watch that intrepid drivel. That's pure lust, I admit it.) I can see the good in men even though I can also recognize the weaknesses. They are human and deserve the same acceptance and level of respect as women. They deserve to be treated individually and not as a demographic, which admittedly I have failed to do here. I'm extremely lucky to have a long time relationship with a man who, if not always practices equality, understands it and is willing to listen and learn about my frustrations.  And who sees me as a fellow human above all else and who tries to contribute what he can to the extent that he can. I have two boys who I love unconditionally and who have in them both the influence of their father and the DNA of another man who I appreciate. I have a father, who although far from perfect in many respects, is responsible and was accepting of my mom as (almost) equal partner. He's about 100% times better than many other men from his generation.  I have NIk who is good-hearted and funny and forgiving and smart and tough. And J who is sensitive and witty and almost precious in his rose-colored lack of awareness of all things unjust in the world. I'm not lacking for men in my life. Men who show me their goodness and kindness on a day-to-day basis. Those guys? Top 25 to top 15, at least. ; )

But marriage? The whole institution bugs me. I'm not compromising. I'm opting out, and I'm perfectly fine with that.

Stay Out of My Uterus.

Over the course of this blog, I've been asked from time to time about my feelings about abortion, Infertility treatments, knowingly going through with the pregnancy of a disabled child, etc. All heady stuff. I'm going to try to cover this without actually writing a seven chapter treatise, if that is possible. (ETA: Ha! Not possible!!) Because it all boils down to the same issue for me.

First of all, let me just say that I don't like the whole idea of abortion. This comes entirely from an emotional place, not an intellectual one, nor even a moral one. It is because I look at it from the perspective of infertility and adoption. I spent months, literally rolling the dice to see what a one in six chance of becoming pregnant each cycle actually looked like, scouring the internet for PCOS and IUI success stories, disability adoption stories, quadriplegia success stories, etc. I spent years wondering if I could ever become a parent or if it was just a pipe dream. At times it got so hard that even looking at the baby section of a store was painful. I spent hours in a waiting room at my RE's office with a bunch of other miserable, yearning people. We were surrounded by 3-ring binders of past patients successes. Photo albums and walls covered with pictures of IUI, IVF, and ICSI babies and their happy parents with that look of relief so evident in their eye as they held their infant. It was encouraging, but we in the waiting room were still miserable and yearning, wondering if we had enough ultrasound wands stuck up our hoo-has, enough time in the stirrups, enough weird speculum related x-rays, and D and C surgeries and injections and hormone altering pills, if we went through enough crap--would that ever be us up there on the walls with our baby? And although I didn't adopt, I have been around the IF community to see people who are trying to adopt and how they agonize over home studies, profile letters, dossiers to foreign bureaucracies, waiting to be chosen and then unchosen, spending tens of thousands of dollars on administrative and legal costs in hopes of becoming parents.

So, yes, it is emotionally hard for me to hear about women who can get pregnant so easily decide to abort. I'm not a big fan of it. But I understand that not really anyone is, even those who have chosen that route.

But politically, intellectually, logically, and yes, even spiritually I believe that abortion should be legal. I wondered, if and when I finally got pregnant, if my views would change. They did, in that they only got stronger. I became even more pro-choice. I've talked about this before, so I won't go on about it, but twice in my life I have thought of having an abortion and been grateful for the choice, even though I have never had one. The first time was when I was 20 and dumb. I got very accidentally pregnant, in that we did use birth control, but not really the best kind. Here is the thing about birth control, Nothing, absolutely no form of birth control is 100% foolproof. Most purport anywhere from 89-99%. When there are millions and millions of women using birth control, 1% is a huge number of accidental pregnancies. Hundreds of thousands, potentially. At 20, I was a college student, a sophomore by credits, living on $368 a month. I was unmarried and the father was in a more precarious situation than I was, and we were close to ending our relationship. In fact, I guess you could call the sex that resulted in the pregnancy "last call" sex, if you will. I never really got very far in the decision making process because I miscarried at 12 weeks. But during those weeks, even though the thought of abortion horrified me, it gave me another option, and the option of opting out sometimes is what you need to clarify how much you want to opt in. After the miscarriage, I wanted to double up on birth control and attempted to get on the pill. I had no insurance, no gynecologist, and wasn't even taking enough credits to qualify for student health services. It was Planned Parenthood who came through for me, providing me free medical services and reduced cost birth control pills. I also learned a lot of basics in family planning that I should have known but didn't from them. It was my only option and I was grateful for it.

The second time I thought about abortion was when I was pregnant with the twins. I didn't seriously think about going through with it, I had worked so hard for these guys I wasn't planning on quiting now. But due to the fact that my already complicated pregnancy was now made super complicated by the fact of the twins, I had to face the possibility that my life could be threatened and I might be in a position to choose between my life and the babies. Horrible choices, but having the abortion option available made them easier to face. If it got so bad that my kidneys were failing, I did have the option of bailing out to save my health. At 32 weeks, too late for an abortion, I had a different dilemma, I had to weigh my babies health against my remaining eyesight. Each day, each step was a balancing act. This was not life and death, but it was scary. I could give birth at 32 weeks and my kids would end up in the NICU but I could go on to get the best surgeries and medications and outcomes for my vision. Or I wait till after the babies are full-term, and risk never seeing them. I ended up doing a compromise of sorts. A non-anesthetized simpler surgery than the best surgery, No medication until after their births, and then a follow up medication and surgery. I want to clarify something here. I was having contractions off and on throughout my third trimester, but not 'real' ones. I said somewhere that I was having contractions on the way to the hospital. I was, but I was not in labor. A decision was made between myself, my perinatologist, and my ophthalmologist to have a planned C-section at 35 weeks. It was a compromise decision. My blood pressure was rising, my non-medicated glaucoma was worsening, and the babies lungs were developed enough, so we decided it was time. How this all relates to abortion is this: I got to choose at what level to risk my own health and vision and my babies health and survival. It was not easy, but no one made the decision for me. I can't imagine someone saying to me at 32 weeks (or at 16 weeks, well within the abortion window), you have to abort to save your health! Or, you have to go into kidney failure and go completely blind to save your unborn fetuses! No one was in my situation, no one knew how balancing the babies needs and my own felt. No one had the right to make those decisions but me.

The other issue I thought of when I was pregnant and got such a backlash from D's family and a few strangers on the street was the whole eugenics thing. Disabled people historically were subjected to mass sterilization and sometime forced abortions. Also, those who gave birth often had their babies taken from them the second they were born. And by historically, I mean within the last century, the very recent past. Deaf and blind folks, as well as those with cognitive or emotional disorders and even physical disorders like CP were not allowed to make their own reproductive decisions. The fact that not so long ago, someone could FORCE me to have an abortion makes me even more committed to abortion rights. The flip-side of what happened to disabled women was happening to nondisabled women in the beginning of the last century and beyond. They were being forced to HAVE children. Information about available birth control methods like the rhythm method and how their cycles worked was being withheld. They also had no rights as far as consensual sex in marriage. They could not use abstinence  to avoid pregnancies either. Women were stuck in abusive marriages and forced to bear and raise children that cemented them in poverty and locked out of educational and work opportunities. This all goes back to the same issue. Women need control of their own bodies and their own reproduction. These rights need to be self-evident.

Does the fetus have rights? Is it a life? A human? Does it have a soul? If so, when? At conception? At 40 days? At birth? I don't know the answer to these questions. So, I assume that it is a human at conception and it does have rights. But here is my thinking on that: You have two humans involved here. An unborn child and a woman. If the woman wants to abort for whatever reason, you have two humans whose rights are in conflict. And you have to choose whose rights are paramount. The fetus needs the host, a woman, to survive. The woman's body is being compromised by the fetus. Even in the most healthy pregnancies, the fetus compromised the woman's body. Any ob/gyn will tell you that a fetus is a parasite, biologically speaking. My peri told me that when I worried that I couldn't eat enough due to eight months of morning (all day) sickness. "Ah, don't worry," he said casually, "They're parasites, they take what they need. You'll feel like crap and be malnourished but they'll be fine." I know it is a cruel way to look at pregnancy, but biologically, its true. Most of the time, women are willing and able hosts and put up with the sacrifices with no problem. But in no other situation do we require that a person compromise their bodily integrity for the health or life of another. No one is required to give up their life, an organ, or even blood for another person. Many do voluntarily, and that's great. But no one is required to. Even if a person is responsible for the other person's precarious demise are they required to provide biological and "hosting" services and products for another human being. A drunk driver who injures an innocent passenger who needs a blood transfusion or a liver transplant or whatever is not required to provide this. This is about the inalienable rights we have to control what happens to our own bodies. As crude as it may seem, a woman is hosting another human. She may even have gotten in this situation by her own stupidity or bad judgment, just like our drunk driver. Still, she needs to have the right to choose to do this voluntarily or not. They are both human, and they both have rights. This is why I don't totally object to mandatory rehabilitation for pregnant addicts. I think there is a potential chance for a balance between rights and some positives to happen there. But to carry the baby at all? I think the woman's rights trump the child in that instance. It is an unfortunate situation when a woman feels like she can't go on with a pregnancy. And my hope would be that she have all kinds of options available to her so she could make the best decision for herself and her pregnancy. Abortion, as much as I don't like it personally, needs to remain one of those options.

One of the reasons I don't like abortions is this whole issue of pre-screening and abortion of disabled fetuses. I am saddened that so many people (about 90%) choose to abort fetuses Down Syndrome, Spina Bifida, Cystic Fibrosis, etc. It saddens me because this is such a social construct. But our society is not set up to help the poor woman who has no reference to disability and has just learned her kid has Down Syndrome. Nor is it set up to accept and assist her and her child after it is born. What happens is, when women do the triple screen (or quad screen or whatever) at about 18 weeks, and they are told that their unborn child has a disability, they just have a matter of days to a)go through the grieving process of losing the ideal of a "normal" child; b)process all the information they can about their child's disability; c) process what this will mean for their own lifestyle, financial situation, the way they will be perceived by their peers; d) process their own prejudices and misconceptions about disabled people and learn how to become an advocate (they need to become an instant advocate because their doctor for sure along with everyone else will expect them to abort); and e) figure out that there is a whole community of support out there and most importantly, many happy parents and happy children that are disabled. You will laugh at this reference to show what I'm saying, but their was a season on the TV show, Dallas, many years ago where Donna and Ray found out that her unborn baby had Downs. Then they went through weeks and weeks of agonizing decision making. They went out and got to know adults with Downs and parents of children with Downs. They met with doctors and self advocates. They started volunteering at a sports team for kids with Downs, they became close to a child with Downs and invited him into their home and practiced taking care of his needs. By the end of the season, they had chosen to go ahead with the pregnancy. They figured out that parenting a Down's kid would be a real challenge, but not a tragedy for them or the kid and though not what they expected, it was what they wanted.

And wouldn't you know it? That was the season that was all Pam's dream. So after they decided all that, Pam woke up and it all never happened. (I always wondered why she dreamt about them so much, didn't you?) But in reality, 18 weeker pg women do not have weeks and months to explore these issues and make these decisions, they have a matter of days. And with the oppression and prejudice in our society about people with disabilities, you can't expect them to really come to a different understanding about life long thought patterns that are ingrained in their psyche. Outlawing abortion is not the answer here, changing what it means to be disabled in this world is. Making it respectable. And that is not something a mom can do in 3 days. It isn't even something 54 million disabled people can do in 50 years. I really feel that it is unfortunate when mothers abort disabled babies. I think they are missing out, as are the children, of course. But I am realistic enough to know that pointing a finger at a particular mother in this situation will do no good. This is the hidden problem with oppression and discrimination. Everyone turns out to be a victim of it, even if you are not the target minority. The able bodied mother is oppressed herself by society's discrimination and lack of respect and value for disabled people. I've often wondered what will happen if they find a "gay gene." The Gay rights movement is leaps and bounds ahead of the disability rights movement. Will society be ready to accept a gay baby pregnancy? Or will there also be a 90% abortion rate? And we can carry that to eugenics of eye color, sex, hair color etc. If we can determine all this pre-birth what will happen as far as abortions? Again, here the answer doesn't seem to be to disallow all abortions. The answer is about changing what society values. Going deeper and seeing the worth of all people instead of giving in to shallow and misinformed prejudices or even vanity. Group think is incredibly persuasive when it comes to these types of decisions. Right now, it is the common logic think to do to abort a downs baby because downs adults are not valued and respected. What if they were? It would change those scary days after amniocentesis dramatically.

Also, Down's and Spina Bifida are just the tip of the iceberg as far as amniocentesis decision making goes. Many times, parents are told that their child has a terminal condition. I once knew two women who were pregnant at about the same time and both were told their kid has trisomy 18. Trisomy 18 is usually fatal within a few minutes to a few months after birth. One woman decided to abort. Her reasoning was that her baby was all nice and comfortable and warm in her womb. It was the only home he had ever known. The child would be aborted via anesthesia overdose, and thus would simply fall asleep in her uterus and die inside of her. This, to her, seemed more natural and comforting than to give birth to a child who might have nothing but pain in a cold, sterile incubator. To her, it was the only thing she could do for this child as his mother, that he die within her. The other woman decided to give birth. She decided that for whatever short time her baby had, she was going to make it the best possible. That her baby deserved every second of its short life that she could give her. She had her baby and she lived for about six weeks. During that six weeks, that baby was constantly held, loved, nursed, sung to, comforted, played with, all by a round the clock vigil of family members and friends. She died at night with relative ease in bed between her mother and father. This was how she chose to best mother her child. Who took the right path? They both did. Who am I, or anyone else, to say differently? It is about your personal relationship with your child as a mother. No one can make these decisions for you.

Moving on, I'm not going to say a whole lot about ART (Assisted reproduction) except to say, again, these are very individual decisions having to do with your own body and your own decisions on how to balance risks. It is the same issue as abortion. One thing I absolutely CAN'T STAND is when people make comments like, "Well, if you are infertile, maybe God is trying to tell you not to have children! You shouldn't mess with GOD!" So by that line of thinking, if you get cancer, you shouldn't get medical treatment to fight it because God must be trying to tell you not to live. Don't mess with God now! If you seriously break your legs and you will never walk again unless you have a very complicated high tech surgery, God must be telling you that you belong in a wheelchair, right? Infertility is just a medical issue like anything else. You have rights as far as what medical treatment you want to pursue or refuse. Infertility treatments are no different. Medical technology is advancing in this area like in every other medical field. It gives us more options. How you go about dealing with IF is such a personal thing that I can't imagine judging someone for it. Yes, sometimes I see people on their 20th IVF and wonder why they don't give it up and adopt? But never have I known all the reasons or been in all the situations that bring people to ART. Yes, people who go nutty doing pre-implantation genetic testing to get a perfect baby are a bit disillusioned that this will guarantee them a perfect Mensa child. But here again, it is society's attitudes that need to change, not so much the available technology.

One last thing along these lines. This:

If you don't recognize them already, let me introduce you to the Duggar Family. Jim Bob and Michelle Duggar and their SIXTEEN children (with number 17 on the way.) These are all biological children, folks. This family is evangelical Christian and they have decided to let God decide how many children they have. They homeschool, they have no debt, and live very frugally, yet surely buy out the Costco every other day. They have Christian hair. You get the idea.

I do not agree with the choices the Duggars have made. Mostly on the grounds of overpopulation and our responsibility to not go crazy making the problem worse. And personally, if I spent the past 20 years of my life pregnant and breastfeeding without a break, I'd want to hurl myself off the nearest skyscraper. However, I agree to the principle that they have the right to make these decisions. Recently, on a pro-choice, feminist website, the Duggars came up and everything from the condition of her vagina to the assumption that the girls are being abused came up. I don't think there is any evidence to support a problem with either the mom's vagina or the girls safety that I am aware of. I mention them because it goes both (all) ways, folks. If women have the right to decide whether to take a fetus out of their uterus, they also have the right to decide how many to support in their uterus. If they can't have 17 children, then can they have 10? How about 8? Is 4 OK? Or should we be really logical and say only 2, to replace ourselves? Or we could take China's approach and only allow one baby per mother... and have thousands of impoverished or otherwise oppressed mothers have to abandon their (mostly) girls because boys are valued more. Thousands of children who were probably wanted and loved end up institutionalized until they are able to find adoptive homes. Often leaving them with emotional and developmental delays. Again, I see nothing wrong with societies educating people on birth control, and overpopulation, and encouraging smaller families. But, still, I think if we defend the right to control our uterus then we have to go all the way. Families like the Duggars are very rare, which is why they get so much attention. And their hair still annoys the hell out of me. But I will not be making fun of anyone's vagina or advocating that women shouldn't be allowed to have that many children while also advocating that woman should have control of their bodies should they decide to abort. Reproductive rights are reproductive rights.

All of these issues boil down to one thing. Control over what happens to our bodies is an inalienable right and should be fought for.

And Now You'll Understand Why The In-laws Think I'm a Bitchy, Man-Hating, Feminazi

A couple of hours ago I read the always wise Meredith's comment on my post below about homeschooling. I've been thinking about it and the whole issue she brings up since reading it and it's driving me crazy and now I have to blog it out. (Thanks, Meredith...I was just going to veg in front of the TV tonight : ). I'm not sure I have a whole coherent plan to write about my thoughts here, so bear with me. She says in part:

After I read this I really tried to think through what it is that bothers me about homeschooling, since I've never put my finger on it, and it's this: the larger social implications. Why is it exactly that homeschooling has become much more common and more mainstream in recent years? And what will that mean for our society, and especially gender equality, as time passes? Because let's face it, women are the ones doing the lion's share of this work, just as with stay-at-home parenting, and both take them out of the work world for years. I see so many of my friends doing or considering homeschooling or staying at home with young children (god knows I'm tempted too), women who are committed feminists and liberal-minded thinkers, and I wonder what it means for their voices to be absent from the work world.

So many people talk about this issue of the struggle that women have to choose between or somehow balance their careers and their families, and how the women who choose to stay out of the workforce for  a period or forever, are (unintentionally) creating a bigger gap for women in workforce equality. Homeschooling, then, stretches and expands this gap as it potentially takes more women out of the workforce for longer periods of time. And even a possible hint about how maybe some men are seeing this to their advantage and pushing for more women to get back in the home where they belong via homeschooling. (Have I got that right, Meredith? Don't want to misrepresent your point.)

Obviously this is an interesting observation to me because, I, like every other mother in the US it seems, have struggled with the whole parenting vs. career thing. I worked long and hard on my career--and if you put aside the disability/health insurance complication I've got going on--yes, I essentially gave it up to become a mother. And yes, if I homeschooled, I would be deciding to give it up for a longer period, maybe indefinitely. At least to the extent of giving it my full-throttle effort and attention. Yes, I worry about what this means for not only women in society as a whole, but the implications it may have on my own kids. Two boys that will see their mother not working outside the home and pretty much spend my days "doing for" them. (Although I hope they will see it as "doing with" them.)

My own mother--and I'm sure I've told this story before--with only a background of poverty, abuse, and a high school diploma, worked her way up from mailroom clerk to highly paid executive in a large corporation. It was a lot to live up to, but also she was a powerful role model for my sister and I. She also perhaps paved the way for other women executives that followed her. One of the things I regret now that she is gone is that I don't have an opportunity--from a parent's perspective--to talk to her about the choices, sacrifices and balances she had to create in order to do that. My mother was not very involved in my sister's and my schooling on a day-to-day basis. She went to our conferences, expected good work and good grades and that was that. I don't feel neglected in any way because my mom was never room mother, but I don't know anything different either. I do remember that she was tired a lot after she came home. She came in, changed her clothes, we had dinner, and she sat in front of the TV until around 10, and she went to bed. (I don't mean to imply that we were ignored during this time, she talked to us and stuff, but I'm just trying to recreate how she might have done it with the only evidence I have: My own memories from my own perspective.) So, my point is that I struggle with the work/mom guilt thing as well. And it is certainly a core issue when it comes to homeschooling.

Sometimes I think, though, that women are thinking about it all wrong. (I'm sure I'm going to get slammed for this by someone who is much more knowledgeable about woman's issues than I am.) It's like we are accepting the oppression that the patriarchy feeds us by falling into the oppression trap. (Not like when you are oppressed you actually have so much of a choice to NOT fall into this.) It's like our only two choices are a) we stay at home and give up the workforce to men and take 99% of the responsibilities of raising children like we were expected to prior to the 60's; or b) we must go to work and try to do it exactly how men have worked in order to be competitive. We do a 40+ hour week. We keep our kid-related absenteeism to an absolute minimum. We come back to work before we are even done bleeding from giving birth and our kids are 3 weeks old as if it all will not affect our jobs one bit. We assure our employers that the fact that we have children will in no way impact our job performance and almost pretend not to have them except in idle small talk with other female co-workers. We follow all of men's rules so we can struggle for that equality in the workplace while most of us still are responsible for 99% of the child and house work at home. Two choices. Framed for us entirely by the patriarchy. Either go home and do your womanly duties, or work by our rules- and then go home and do your womanly duties.

It is the classic whole "Birdcage" model of oppression (by Madelyn Frye, I want to say??). When men occasionally see a bar(rier) in front of them, they just walk around it. When women see a barrier they try to walk around it but are hit by another barrier. Often a catch-22. There is an equal and opposite barrier on the other side. We either work like men, or we stay home like the little housewife should. Those are the choices. We are trapped in a birdcage. We try one way and it is blocked, and we turn around and try another way and there is the other side of the cage.

In order for true equality to happen in the workforce, we need to shed these options and create our own. We have to remember that men have only been able to do the full-time job where children and family is expected to be a weekend hobby at most because women throughout the history of time have enabled them to do this. We took care of the house and all their needs and raised their children and handled all of their other business for them. This is the ONLY WAY they could have set up the standard 9-5, heavy-overtime, always available, lots of travel, competitive workforce as it is today. Similar to how the U.S. could only have become the richest country in the world so fast by profiting off of the backs of slaves.

I read a lot of mom blogs now. More than I ever did previously. And although there are notable exceptions (and many people who just don't blog about the equity of their own marriage), I have been shocked at the prevalence of a running theme that I seem to read all the time. Mothers, both working and SAHM, are doing ALL. THE. WORK. They have a baby and they are doing all the getting up in the night while their husbands need "a break" and need "a night out with the guys." They all get ready to leave the house and the man just gets his coat and goes to the car while the woman is herding shoes, coats, kids, snacks, books, or whatever is needed for the trip. The woman has worked all day (either in the home or out) and the man comes home from work and sits on his ass all night because he's tired from working all day while the woman makes dinner, doesn't even sit down to eat it, cleans up, gives the kid a bath, handles the 23 little kid catastrophe's and puts the kid to bed. (Oh, yeah, and the father reads a bedtime story.) And when a woman goes out, she has to book well in advance with her husband so he can "babysit" his own goddamned children. Sometimes I'm so glad I live alone and am not married because I TOTALLY COULDN'T HANDLE THIS.  (That's probably a good indication right there as to WHY I'm not married.) I love D and he has some good qualities but he is the exact same way and I struggle with how to deal with his lack of taking responsibility for anything much outside himself. It is disguised and muted due to his disability and the fact that I get paid to assist him, but he doesn't have a friggin' clue about how much work, day-to-day, goes into taking care of his kids. He doesn't know when they need to go to the doctor or what vaccines they need. He doesn't know what programs are available for them to socialize with other kids. He doesn't know how much I pay for their food, insurance, clothing, fees for activities, etc. He doesn't know whose got the chronic mushy poop problem and who has occasional constipation. When I ask him to step in and take care of a discipline problem because I've got my hands full making him dinner, and he whines in a useless tone, "Aaaaaron, Naaaaim, Stoooop,' while just waiting for me to come handle it. I mean we talk about it and he's interested and concerned and he knows some of these things ah...temporarily. But he doesn't know in a way that makes him RESPONSIBLE for any of it. My friend Nik is the same way. I love him to pieces and he has many wonderful qualities, but when he went through a divorce, there was an obvious lack of understanding of how exactly it was going to be, day-to-day, for his ex-wife to have to raise his two children on her own. My dad doesn't get it either. It's all over the Internet, this attitude. It's everywhere. Its so common that we don't even think about it -its just the way it is. Yes, they care. Yes, they help out. Yes, they are concerned and involved. But they are largely not taking responsibility for the nitty-gritty, day to day, hour upon hour, mundane maintenance and work that it takes to manage a household and raise kids. That falls on women. And even when men are providing financially for women, I hear all the time the guilt and fear women have that they have left themselves vulnerable if the marraige should disolve and would have to try and resurrect dead or nonexistent careers to get by. Even when paying child support, most men (unless they remarry and start new families) gain financially and career wise in divorce while women lose financially and watch their careers suffer. Why? Because women keep near total responsibility for the kids.

Okay, so all this ranting is about this. The only way women (read: mothers) are going to ever get a chance at equal footing in the workforce is if the workforce changes and if marriage equity changes. Work needs to become significantly more flexible so highly talented women have a chance in hell to show their stuff. Things like FMLA need to be expanded, flexible hours and part-time work need to be made available, telecommuting needs to be accepted, exiting and re-entering the workforce needs to be made easier. Child care and health care need to be provided.  Families need to be respected and the work and issues that involve families need to be integrated into the workforce instead of playing like they can't exist in order to get ahead. This is probably only going to ever come about if men see an advantage for themselves as well, and can't out-compete their female counterparts who are doing part-time or flex work. They can't be allowed to continue to have the freedom to cast off all family responsibility and pull these obnoxious 80 hour weeks that mothers can't possibly pull-off. (Sometimes  I think some women don't choose to stay at home because they are all about the kids; they do it because they can't stand the thought of being at such a disadvantage in the workforce by not being able to "pull their weight" as well as men. The stress is just too much so they give up on their careers and instead concentrate on something they have a shot at success at--parenting.)

So how do we make working conditions more equitable? I think it really needs to start at home in marriages/partnerships. I hate the implication that women who stay at home are wasting their lives away doing nothing and not supporting the feminist fight. One of the main problems here is the hours of hard unpaid slave labor women are doing in the home (and I'm counting the "second-shift" work that the majority of working mothers do as well) is completely devalued by society. No it isn't necessarily intellectually challenging and no it isn't glamorous, but it is this valuable non-paid work that women have done that have allowed men to go off and do the glamorous, high-paying, stimulating stuff. This is why it is so easy for men to cast it off to the woman in a partnership. They think it is nothing and it is drudge work. Fathers need to do their fucking share, OK? End of story. Maybe this is easy for me to say since I'm not married, but I just want to say to some women, "Don't marry the bastards and have their children if they aren't willing to pull the weight." (I think that but not seriously. I don't really blame women for this as I am in my own weird version of it as well. I mean, really...What I'm talking about is demanding that men voluntarily give up their power and advantage. That is going to take all of women pulling together, not just one housewife demanding that her husband do the laundry.) If we could somehow demand that they pull their own weight at home, women would have more hours freed up to work and men would need more flexible working conditions to do their part at home.

Now, I'm not saying that married couples need to always work outside the home X number of equal hours and work inside the home Y number of equal hours. (Although if it comes to that, yeah, wives. Get out a sheet of paper and take some data on who's doing what and when. How equal is it? And how fulfilled are each of you doing it? No one person should be stuck with all the drudge work all the time.) Sometimes it may be that one person really enjoys staying home and the other person likes their job and it works out for them. But, this is what I'm saying: Women should not be pulling a second shift at home while men are just going to work. Especially if she wants to work on her career and even if she wouldn't make as much money doing it as her husband. Women have the right to be happy in work outside of the family, and men have a responsibility to clean the damned toilets if a women has worked all day long already. And if they do, they shouldn't be all self-congratulatory about it like it is something special that they shouldn't be doing in the first place so now they are all pro-feminist.

Since we can't easily change the shape of the workforce to give more flexibility and thus an equal playing field to women since, like, all the men are in charge now. I get what Meredith is saying. We need these women like my mom and others who have either opted out of motherhood for their careers or just busted ass trying to do it all and find a balance somehow. They are the only ones we've got right now if we have decided to forgo career and put motherhood first. God bless 'em. But, I really think that the revolution needs to start at home. Both working moms and stay at home moms need to stop enabling fathers to opt out of large chunks of the daily grind of housework and parenting. Fathers need to feel the pull and live with what we've been living with for generations. They need to pull their weight at home instead of getting a free pass to out-compete us in the workforce.

So, this is what I think needs to be done, but I'm not saying I'm so great at it myself. D and I have so many disability related complications in this regard. And sometimes you just don't have the energy to nag and stand up for yourself and demand that the guy take a shift with the screaming newborn at night. You just need to get it done and get through the day so you just do it. Especially with the added pressure that if he doesn't get a good night's sleep, he may put HIS job in jeopardy. (It all comes down to the damned corporacracy and our acceptance of the religion of the All Mighty Profit, so I'm not saying there aren't several layers to this problem.) But I guess what I am saying is that I think woman who have chosen to sacrifice career for motherhood have not (or don't have to) check out of the fight for equality. They actually have as crucial of a role as women in the workforce. They just need to feel empowered enough to take it on.

And as far as homeschooling goes...might I dream that part  of my job is to teach my boys about their possible future responsibilities as partners and fathers? (I've currently got a two year old that happily helps out with more laundry, vacuuming and dishes than many full-grown men probably do. Hee hee). And too help them understand the oppression that women face? To possibly guide them to be part of the solution instead of part of the problem? I don't know if I can pull that off. But sometimes methinks I might be able to do it better than the public schools can.

(Despite my ranting, I really do appreciate your comment, Meredith. Thank you.)

FMLA up for review, Take Action before we lose it, folks.

Emmie has alerted me to the fact that the Family Medical Leave Act is up for review and is in danger of getting reduced. Which is scary and stupid on the part of corporations and the government.

I have used the FMLA twice for my own kidney surgeries and my father was able to also take it twice to help me out when I was recovering from said surgeries. Many disabled people are able to stay employed because of this leave--albeit unpaid. Many parents are able to stay employed while supporting their children or parents when they are seriously ill. It is completely inhumane that the government want to support corporations in weakening this act. It is also not in anyone's best interest. If folks are not able to stay employed when serious illness strikes, they may find themselves in a freefall that devestates their lives and wreaks havoc on the rest of us as well. More people become impoverished and are not able to pay taxes or pay for medical care, in addition to losing their employer sponsored health insurance. This puts a bigger burden on all the rest of us while giving corporations a break. We need to decide who should have the power here and where our priorities lie.

One of the main ways people use the FMLA is for maternity leave. Emmie talks more about this, but sometimes, especially when a pregnancy doesn't go as smoothly as planned, it is the only thing women have to safeguard their jobs. I don't know if most American women realize that in almost every other country in the world, women get up to several months of paid maternity leave. And then usually after that, many get reduced hours and a child care stipend. This is just what is done by most of the world to ensure that their workers are treated at least somewhat humanely. American women don't realize that many families in other countries look at the ways we are treated here and just think it is savage in its cruelty.

I lost my job before I was pregnant and then did some part-time contractual work up until after I was pregnant for the same employer and then lost that as well. Sometimes, I think that losing my job was the absolute best thing that ever happened to me in regards to my desire to be a parent. If I had been working while pregnant, I would have had to go on leave five weeks before my children were born because I was put on bedrest and had a surgery. Then after a C-section and two newborn preemies, I would have had to return to work when they were just six weeks old. At six weeks my kids were a bit over 5 pounds and were struggling to eat 20mg feedings every two and a half hours round the clock. Not to mention that I had just lost a chunk of sight and had another impending surgery. The stress, instability, and threat to mine and my kids' health insurance and income makes it sad, but true that we are much safer now having lost my job and gone on disability and part time work. I know most people in my situation don't even have disability to count on. But many times, disabled people do not qualify for their company's short or long term disability benefit due to pre-existing conditions (I didn't qualify with the disabling conditions that forced me out of a job). FMLA is all we have. It is all most U.S. mothers have.

Jessica commented on Emmie's site:

It's really time the US starts to invest some of the vast amounts of money they are spending on security on its own people, and not killing others.

I'd really like to repeatedly tattoo that sentence all over G.W. (et al)'s face.

You can comment in support of strengthening the FMLA here. But hurry, you have until Feb. 16th.

I pounded this out in an angry late-night hurry, hope it all makes sense.

Well-Reasoned Arguement or Millitant Crazy Disabled Nutjob Rant? You Decide...I'm Going to Bed.

Well, Shannon, who is always challenging my thinking with her thought-provoking posts, requested a nice, light easy topic for me today:

Explain in detail your end of life ethics and politics. I was intrigued by what you said months ago about the Terry Schiavo case. I want to be all "freedom to die" but I am enough of a Marxist to know that this kind of freedom would most likely be offered disproportionately to the poor, minorities and others capitalist society doesn't value.

Please discuss.

Yeah, OK, no problem. I can do this in my sleep while prying dangerous objects from toddlers with one hand tied behind my back and while juggling three loads of laundry. Well, here goes:

I know Shannon has taken bioethics courses and I have not, nor have I done extensive research into the policy/legislative side of this topic. My views are shaped almost entirely by the disabled community, and most of that is through anecdotal stories and experiences. Every disabled person either is someone, knows someone, or knows someone who knows someone who has been negatively affected by right-to-die politics. Just about Every major (and minor, that I know of) disability advocacy group, leadership/policy committee, or direct-service provider outside of health care has come down on the side that right-to-die/death with dignity laws and politics are discriminatory and very dangerous to the disabled population. The reason is that although very few are helped by these laws, a great majority of disabled people are harmed and even killed when it was not as they wished.

One of the main problems for the disability civil rights movement in this case has been that assisted suicide has become a pet issue, like gay marriage or abortion, for the republicans to swing the evangelical vote their way. This has caused such a knee jerk reaction among liberals that the disabled perspective on this has not even been able to enter the national discussion because our practical issues cannot be heard around all the Godbags and and all their talk about, well...God. The liberals go all separation of church and state (as I would do as well in this case) and the very horrid slant that the consequences of this issue take are lost to the liberals, and the conservatives. With whom so far have made for very strange bedfellows in this case, because they won't listen to us either, they just want to talk about God. So, for the purposes of our discussion here today--we are going to leave God out of it, Okay? This is not about God, the Sanctity of Life, Playing God, or anything of that nature. This is about the value, or lack thereof, that is put on the lives of the disabled. This is a civil rights issue.

Personally, I believe that in a perfect world (you all know how I love to tout my Perfect World(TM) theories) I would not have a problem with assisted suicide/right to die issues. I think in most cases, the current laws that allow anyone to decline medical intervention and to have the right to comfort measures and palliative care are enough for the vast majority of terminally ill people to die in as comfortable and quick way as possible. I also don't see a mass problem with doctors or family members wanting to hold on to a dying person indefinately against their will. (Which makes disabled people suspicious of why policy makers are telling us we need right-to-die laws in the first place.) I do believe that in a small number of cases, it is appropriate to allow a person the freedom to control his/her own death via suicide or assisted suicide. In instances where death is very imminent, and the person is in a horrendous amount of pain that cannot be controlled, I do concede that it may be the merciful thing to do to assist in death if that is what the person desires. In fact, I've been involved in health care enough and talked to nurses enough to know that this does, in fact, happen on a very under the table, informal way. A person is given a large dose of morphine to control pain. The dose would be large, but not kill a healthy person, but due to the person's declined health, it is enough to cause death. There is a difference to me in providing palliative care by withholding intervention and providing comfort measures to ease a person into an already eminent death, compared to ending a life prematurely. There is a process to dying that depending on several factors, can take several days or weeks while the body slowly shuts down. I don't see a problem at all with a person deciding that they do not want any intervention or resuscitation during this death process. However, there is a difference between using medical care to prolong death, and using medical care to sustain life.

Most people do not know or have never thought about the difference. Most people do not understand what life support is, what a feeding tube does, what the difference is between a life saving intervention and a futile medical procedure that just briefly puts off death. Also, most people have a tremendous fear and lack of understanding about what it means to be terminally ill, permanently disabled, and brain damaged or "hooked up to tubes." etc. This fear causes anxiety, prejudice and sometimes hatred towards people with disabilities. The prevailing common wisdom in our society is that people would rather be dead than disabled. I cannot tell you how many times I have introduced a nondisabled friend to a disabled friend and been told later, Geez, I'd rather die that live like that. In particular, my former boss, who had CP and used a wheelchair, and was a well-published Ph.D. and was a likable guy, was always the target of passerby hatred and disdain. We traveled together a lot, and people often took me aside to tell me that he grossed them out in a restaurant, or that people like that should be put away, or be better off dead. The disabled, people say, especially severely disabled individuals are scary to look at, scary to think about, and make them uncomfortable, should just go away. Therefore, even though in my perfect world I would probably not object to assisted suicide or right to die legislation, in my current world, I know that we are not ready yet for this type of power that has been so easily abused. We do not talk about death and disability in this country, even though 80% of us will be disabled for some part of our lifetime and we are all gonna die. We are not grown up enough yet to handle this type of power. We have not proved ourselves trustworthy enough for the responsibility.

I know this is hard to understand for people outside the disability community, but try to live in our world for just a few minutes. In our world, we are constantly told, through the media, through our health care providers, through our friends and families, that it is better to be dead than disabled. That if we weren't so selfish, we would just go off and die so that we wouldn't be burdens to society. We have no value, we cost too much money to keep alive, we burden the health care system, we add nothing to the fabric of society. This admittedly affects more of your high quads and folks with mental/cognitive disabilities more than it effects me (cuz I don't "look" disabled) but even I have dealt with this. I have been told by health care providers that ideally I need my kidneys to go before my vision and hearing goes, so that I can have a shot at the kidney transplant list. For if I go totally deafblind first, my chances on the transplant list will be considerably less.

D and I just talked to a woman on the train the other day who I believe had muscular dystrophy. She lost her apartment when the caregiver funding agency took her 24 hour caregiver away and cut her to hourly care. The 24 hour live in caregiver contributed to the rent, and without that money, she had lost her apartment. She was currently on the waiting list for section 8 accessible housing. The section 8 waiting list for the nondisabled poor is usually between 6-12 months. For the disabled, it is upwards of 5 years. So she was put in a nursing home while she waits. (The nursing home will put her further down on the list, her other alternative would be to become homeless for a better spot on the list.) To leave the nursing home, this very independent woman now has to someone come in and sign a release to get her out each time she sets foot outside. She said that when filling out the admissions paperwork, she was required to fill out an advanced directive (aka living will). She faced high pressure tactics from the administrators to sign a DNR. She is also on a trach, she was told that she should say that if for some reason she has an issue where she loses her trach, she would not want to be retrached. This is a woman in her 30's who just nine months ago lived in her own home, did volunteer work on her own, and had a social life. Incidentally, she was going to visit a friend at an apartment complex that is run by the residents who live there. All are quadriplegics who need 24 hour care. They have incorporated into a private non profit in order to share attendant services. Point being, there are reasonable solutions in the world to get her out of the nursing home (which disabled people term "False imprisonment") and back into mainstream society.

This story (which we hear all the time) illustrates a couple of things. First, we have not decided in our society what it means to be terminally ill. To many people, those like this woman who have long term or permanent illnesses such as muscular dystrophy, multiple sclerosis, ALS, spinal cord injuries, cerebral palsy, etc. are terminally ill. Well, technically they are (as we all are.) They will probably die from complications of these diseases, but possibly not for 20, 40, or even 80 years. Trachs, feeding tubes, and wheelchairs to them are not life support that needs to be shut off so they can die with "dignity," They are just the tools they use to get on with their lives. Is Michael J. Fox terminal? Is Stephen Hawking? Is D? According to many, they are.

You can see this in the media all the time. In movies like "Million Dollar Baby" where a prize fighter has an accident and becomes a vent dependant quad and then is "mercifully" killed by her coach, a nonterminal patient with a full life ahead of her is thought to be better off dead, and thus considered terminally ill. Most people who are disabled describe adjusting to a new disability as being very similar to adjusting to a death of a close loved one. They go through the stages of grief just as if it was a death. It was in a sense, a part of them died. They go through shock, denial, anger, guilt, depression, and finally do get around to acceptance. Then, although they may still miss that part of them that was different before, they go on and it becomes less and less a factor in their life. Medical personnel and the general population have been shown in studies to greatly underestimate the happiness and well-being of the disabled. Disabled people SHOCK! actually don't go around thinking that they are a poor disabled person all day long. They don't really think about it at all that much after they adjust. Do you think everyday about how you don't have as much money as Bill Gates or that you are not as beautiful as Denise Richards? Would it be nice? Yes. Does the fact that you don't have these advantages make you think your life is not worth living and that you should kill yourself? No. The problem is, that when a newly disabled person is going through their stages of grief, instead of helping them to get the support they need to go on, people just decide that death is a better option. If you knew someone had lost a husband or a child and was grief stricken with depression and sadness to the point where they didn't want to get out of bed, you would support them in getting help to get over their grief. You might also take up a collection to help with the practical side of money issues or the like. You might make them food, run errands for them, clean their house, listen to them cry at 4 in the morning. You would do anything to help them get on with their lives and process their loss. If they were, in fact, suicidal. You would get them emergency help. The medical staff would be obligated to provide services to them to prevent suicide if they were a danger to themselves.This is what newly disabled people need as well, and what they often don't get. Instead, they get told that they will get help to die. They get asked if they want to live "like this." They get told that they will be a burden to society and their families. They get medical staff that decides they are too futile to care for and that they or the family should be encouraged to pull the plug. They are grieving and they get a gun pointed to their heads. Imagine handing a gun to a despondent woman who just lost her husband and telling her to go ahead and shoot herself. If she stays alive and is a burden to others, she is just being selfish. This is what many newly disabled people face, instead of getting the help they need to put their lives back together. It is discriminatory for the health care professions to be obligated to provide preventative services to any other potential suicide victim, yet encourage suicide or death and not provide these preventative services to the disabled. Yet it happens all the time.

I believe I have told some stories about people who have become severely disabled, got crap for services, ended up in some kind of institution, and then petitioned the court for assisted suicide. Which in many cases, the courts have granted, often siting it to be the duty of the plaintiff to take his own life for the good of the public. (See Larry McAfee, Tracy Latimer, Robert Wendlund, etc.) . The problem here isn't the disability or illness itself, it is the social services system that is oppressing these people. When disability rights groups have come in and helped the individual get out of the institution and have their lives back, they suddenly no longer wanted to kill themselves. These examples are even more heartbreaking when it comes to parents who wish to or do kill their disabled children and get off the hook because it was considered a mercy killing. Some of these kids are merely autistic or have Down syndrome or CP or something, yet society accepts death as being in the child's best interest, because they apparently were suffering. In the case of Tracy Latimer, a child suffocated by her father because she had CP, her mother wrote a note the day before saying she ate well and was smiling and happy. He didn't end her suffering, she wasn't suffering as far as we know. He was ending his suffering. He got a 2 year suspended sentence for killing his child. It happens to the elderly as well. The elderly have been systematically shut out of disability rehabilitation services due to the fact that there is considered little cost benefit to rehabbing them as they will not likely return to work. However, when grandma has Alzheimer's, family members are not given the simple strategies and tools that work for millions of children and working age adults with cognitive disabilities that might also help grandma out. Things like color coding items, putting up picture cues, leaving a radio in the bathroom on at night to help her find the way, setting a routine, giving respite care, etc. are not provided. The family can only suffer and wait for grandma to die. Grandma is going to die, we know, but her time left doesn't have to be such a horrible wait that we try to find legal ways to "end her suffering." Someone made an analogy once that "assisted suicide" in this country is like if you were to go up to a lynch mob and shoot the poor guy about to burn on the cross out of mercy to end his suffering (Golly gee, it is too bad that guy is black), meanwhile you are totally ignoring the lynch mob for putting him there in the first place.

What Shannon alludes to above about capitalistic influences having more to do with which lives will be ended that anyone's "right to die" is very true. Especially in the very corrupt, very powerful nursing home industry. People don't realize that the vast majority of nursing homes are private, for-profit corporations. They are a huge national lobbying force. Almost entirely republican and profit-oriented. They have had enough influence in Washington to ensure that the majority of all Medicare dollars available to assist in the daily living of disabled and elderly get directed to nursing homes. The money does NOT follow the patient. The money goes directly to the nursing home bed, and the nursing home tries to find the most cost effective patient to fill the bed in order to maximize their profit. The perfect nursing home patient is someone who will be there a long time, but needs a very low amount of care, then who suddenly dies without much need for more advanced care at the end of life. (If you remember, D was rejected from 4 nursing homes earlier this year because they would not net enough of a profit from him.) When a nursing home patient gets too expensive, nursing homes either try to buck the patient out sometimes sending them far away from their family, or encourage DNRs or other withholding of care. It costs less to care for patients in their homes with paid care providers such as myself. Let me repeat that: IT COSTS LESS TO PROVIDE CARE IN THE HOME. The nursing home industry is one of the biggest money fleecing crocks in this country. The end of life care provided is of varying quality, but the financial incentive to get financially costly patients to die is a conflict of interest to this mythical political cause called "right-to-die." What sounds like personal freedom is really the health care system's ploy to weed out the extra expense and thus gain a higher profit margin.

But, these disabled people and elderly people are a burden and take so much money, right? Isn't it a waste to use all those resources on them while healthy children aren't getting vaccinated and stuff? I won't deny that disabled people cost money. But the issue of how much vs. how much disabled people could give back if given the chance is very manipulated by an industry that exploits the disabled and elderly for profit. This issue of them taking away needed health care services from others is largely a myth, at least in this country. It is hard for a disabled person to hear that he or she should selflessly die in staunch, honorable moral utilitarianism rather than take health care dollars away from children and pregnant mothers when the people who are saying these things are CEO's of nursing homes and hospitals that are driving around in $75,000 cars to their million dollar homes. Healthy people do not understand how corrupt and in crisis the health care industry is. This includes providers, nursing homes, and especially insurance companies and employers that provide insurance to their employees. Health care does not work as a for-profit business. Capitalism and free market economies depend on competition and supply and demand, and health care consumers don't work that way. Do you go looking for the bargain basement cardiologist's blue light budget special to get your open heart surgery? Do you buy bulk chemotherapy to get the volume discount? (And if your insurance company does, should it?) Do you wait to get that brain surgery until your next raise or when the economy improves? Do we market the deluxe colonoscopy for those with the means who require a little more luxury when having an anal probe shoved up their ass? (Well, in a way, we do... Health care is rationed in this country and richer people get more options and better care.) In any case, blaming the poor and disabled and elderly for the problems of health care is a scapegoat that will get you nowhere. We either decide that everyone deserves the same access to health care or we don't. And if we don't then that is when we start creating beautiful laws entitled, "Death with Dignity."

And isn't dignity a lovely loaded and prejudicial word when applied to death? The biggest thing people talk about when they talk about wanting to die with dignity is that they don't want to have to be fed or taken to the bathroom or have tubes to breathe. Because apparently dignity comes from how you go to the bathroom. D must have no dignity then. Neither must the late Ed Roberts, a vent dependent quad who started the independent living movement. Neither did Christopher Reeve. He couldn't even feed himself, which according to a judge in the Terri Schaivo case, disqualifies you from being human. I'm not saying that losing your bathroom, eating, or breathing abilities isn't a major sucky loss, but it has nothing whatsoever to do with your dignity. Neither does dying, no matter how it happens. Dying and disability are natural parts of human existence. There is nothing undignified about losing some bodily functioning. I know this is crass, but I always want to ask these people that want to die with dignity, "You know you're going to piss and shit your pants and probably fart and gurgle up a bunch of phlegm no matter how you die, right? Even if you take a bunch of pills in a beautiful room with all your loved ones surrounding you, you know that there will be mass incontinence, right? Because that's the way it works and we still don't have a pill that will cause you to die without that kind of DIGNITY!" But in all seriousness, rather than having the only path toward dignity be killing yourself when the body doesn't cooperate in the traditional fashion, how about treating people with dignity while they are alive despite how their plumbing works? Giving them the support and respect that they need to manage their disabling condition. Giving their families respite and assistance when caring for them. Giving them easy access to appropriate comfort measures when they are near the end of life.

So, I need to talk about Terri Schiavo, I know. What you are probably saying by now is that, okay, people shouldn't tell disabled people to go die, but Terri Schiavo and people like her aren't disabled, they are brain dead. Except that she kinda wasn't. Sure she was just a slim sliver of a grey spot on a CT scan to the left of brain dead, but she was not brain dead. She was not on life support. She was not terminally ill. And she was not going to recover. What she was, was severely disabled. The Schiavo case was a very messy one because the families involved were kind of a bunch of crackpots and then the Bush Brothers got involved and we all know they were a bunch of crackpots. It was not a good "model" case for anyone. However, I'm sure the individual, Terri Schaivo, never intended to be anyone's dog and pony show. We don't, in fact, know what Terri Schiavo intended. We don't (and maybe somebody does, but I don't) know whether she was happy. Whether she felt pleasure or pain. I saw video of her, very briefly, and as a trained assessor of individuals with severe cognitive impairments, I'll tell you what I saw. I saw a person who could respond positively to stimuli. I saw a person who smiled and vocalized to touch. It wasn't much, and I would have had to seen what else she smiled and vocalized to (like did she do that in an empty room?) So I don't have a huge amount of information to go on, but I saw someone who was definitely NOT in a persistive vegetative state as I understand the definition, and someone who was NOT totally brain dead with no response to stimuli. But she said to friends before that she would not want to be kept alive like that. Well, that was ten years ago, does she still feel that way? Is there any way of knowing? Do you know how many disabled people laugh at the fact that they said before they were disabled that they would never want to live like that? And this includes happy, well adjusted folks with significant cognitive impairments? This is why, although an advanced directive is a fine thing to have, a more important thing to have is a person who is your medical power of attorney that you trust with your life. That will assess your wants and needs not by what you said and did ten years ago when you didn't know anything about what it was really like to be disabled, but what you want and need in the present. Someone who loves you unconditionally and wants what is best for you in your current situation. Someone with whom you will talk with about these issues extensively over and over again over time, not just offer them checked boxes on a prefab hospital living will document that has very little to do with real life situations. I do not know Terri Schiavo's husband or parents, so this may not be a fair statement: But based on the fact that the mother pushed for rehab and the husband denied it, and my admitted bias towards a mother vs. a fairly newly married husband having the best idea of what is in her best interest, I would have thrown in with the mother as knowing what was best for Terri Schiavo, not the old Terri Schiavo, but  the current one, which is the one that mattered.

But the reason the Terri Schiavo case, and hundreds of other less public ones like it, scares disabled people so much is because the line moved, and is moving all across the country. Most states have futile care policies, in which medical staff can determine that medical intervention would be futile. Although in many cases, the doctors are correct in discontinuing care due to futility, Terri Schiavo's case along with a national trend of other severely disabled people--not brain dead, but severely disabled--are now considered futile cases. Individuals are having actually less freedom in deciding right to die and or live issues. Hospitals, insurance companies, and for profit policy makers are deciding who is too futile to treat and who isn't. Terri Schiavo's case nudged the line a bit. Other cases nudge it a bit more. Disabled people are afraid that next it will be the vent dependent quads and next the cognitively disabled and then the mentally ill and so on...

Before you invoke your "Slippery slope is a logical fallacy" rebuttal to me, allow me to invoke Godwin's Law first. That slippery slope has a historical precedent. Remember that thing called the Holocaust? The one that killed over 6 million able bodied Jews? Do you know your history enough to know how that all got started? It started with the eugenics movement, which was an effort to cleanse the population of the disabled. In the United States, this took mostly the form of forced sterilizations of anyone considered disabled or in danger of having a disabled child. In Hitler's Germany, it  started as forced medical experimentation on the mentally retarded, then the mentally retarded were put into concentration camps and killed, then the folks with CP and the epileptics, then the mentally ill, then the deaf and the blind, then the homosexuals, then I think the poor from the almshouses and the gypsies, then the Jews. This is why the devaluation and culture of 'better dead than disabled' scares the disabled community so much. This is why we think that society has not done enough talking, listening, learning, repenting, and fixing to be trusted with the dangerous power of "right to die" legislation.

Did I lose you with Godwin, there? I do not believe there is a direct corollary between what happened to disabled people in Hitler's Germany, and what is happening in the U.S. right now. However, I do think that it puts in perspective the realities and attitudes that disabled people face currently. This is what we would call a Mockingbird Issue. One in which the law (assisted suicide) itself is not the problem, it is the society in which the law is carried out that makes it unfair. This whole dealy is obviously an opinion piece that has barely scratched the surface of the ethics of death and all the different ramifications of that. But this is my point, as a society, we have not scratched the surface in talking about, dealing with, and finding solutions for the fact that most of us will become disabled and eventually die. You don't let the man convicted of abusing children babysit your children. You shouldn't allow a society who has historically abused disabled and elderly people the mandate to do it some more.

Here is a five minute Google search pile of quick sources:

Not Dead Yet

Amicus Briefs for court cases involving disabled people and right to die

Articles from the Ragged-Edge: Why Disability Rights Activists Are Against Physician Assisted Suicide

The Holocaust and Disabled People

Doctors: Let us Kill Disabled Babies

Freedom Clearinghouse

The Moral Bankruptcy of "Million Dollar Baby"

Disability Law: Oregon's "Death with Dignity" Law

Collateral Damage

I haven't been able to write much because I've been spending time after the kid's go to bed at D's helping him because he is on bed rest. (My father is here with the kids when they are sleeping.) Also, I spent the last week dealing with an issue that just made me sick to my stomach and I was just not in the mood to write about it. Instead of writing about it I have managed to immerse myself in Degrassi:TNG marathons on noggin. (We only get the family channels, so I take what I can get.) Even a megadose of Degrassi hasn't cured me and I still don't want to write about it, but I'm going to tell you about it now, just in case you ever find yourself in a similar situation. You will be more informed than I was.

Some of you may remember that I briefly wrote about our cats. We had three. We got Kai three years ago from a non-profit no-kill shelter. Scrapper, our blind kitty, came from Kansas a couple of years ago. My sister and her neighbors put together an informal Capture/Neuter/Release program with the neighborhood feral cats. Scrapper was one of the kittens that they caught. Then, just last year at around Thanksgiving, we acquired the black cat that D named Zoe. He just appeared in the corner of D's porch, sick and starving.

D took Zoe in and fed him and cleaned him up. Within just a couple of weeks, he improved dramatically and became a nice, friendly pet. We put fliers out for an owner, but no one claimed him. I tried to take him here for a few weeks (Kai and Scrapper live at D's now), but I just became too allergic to him and he went back to D's. I am only slightly allergic to Kai and Scrap, but Zoe's long, black hair was more than I could take.

Zoe was a really good cat. He was good with my kids and my dad's dog and with the other cats. He had an outgoing personality and was very affectionate and laid back. Of the three cats, he probably had the best personality. Kai is a snob. Scrapper is a very nice cat but is a bit dimwitted and slow moving (partly because she is blind, and partly because (I kid) she is in-bred and microcephalic). Zoe was an all around nice, fun and playful cat.

Despite what a nice cat