Women voters and that “special place in hell”

When I saw the clip of Madeleine Albright pacing the stage while admonishing her audience that, “There’s a special place in hell for women who don’t help each other,” as Hillary Clinton burst out laughing, at first I was angry. Eventually, I laughed. I consider myself a feminist, but I do not support Hillary Clinton for president. She only understands women like herself, and I’m not one of them.

My son was born with dystonia 16, a genetic disorder so rare that he is the only reported case in the United States. He has profound and life-threatening disabilities, and now requires 24-hour care — nursing care — because he has a tracheostomy and his airway can become blocked at any time. I’ve been a caregiver for about 18 years.

I love my son dearly, but I would rather be his parent than his caregiver. As his caregiver, administrative tasks require 15 or more hours per week of my time, his hands-on medical takes even more. I have a PhD in literature, but cannot afford enough care for that career.

Nursing care is expensive—rates start at $50 per hour, so I have to rely on Medicaid waivers and state programs, which are parsimonious, leaving me with little time to work, spend time with my daughter and husband or go out with friends.

My husband and I are allowed a set 8 hours to sleep and no more, not even on the weekends. Our sleep shift begins when the night nurse walks through the door at 10:30 pm and it ends when she leaves at 6:30 am. Once my son has graduated from high school at 21, we will be allowed exactly 8 hours to work each weekday, and we will be expected to provide free skilled labor to the State for 8 hours each weekday. I do not know if we will be allowed to have weekend care. If we want time off, we have to apply for it by lottery. This is called “respite” care, and in Montgomery County, Maryland, just outside the nation’s capital, it is not guaranteed.

It never occurred to me that, in America, I could become an indentured servant to the State for the simple reason that I have a child with disabilities.

Hillary Clinton at the Congressional Hispanic Caucus, screenshot via YouTube

Hillary Clinton, screenshot via YouTube

But this seems perfectly reasonable to most of the women that I know. When I speak about injustice and how tyrannical the State of Maryland is, they look cowed and uncomfortable. Many of them would prefer to be my cheerleaders, doling out encouragement and telling me I can keep doing this. Others seem to think giving up the career I trained for was some kind of “choice,” just as they claim their own career decisions have been “choices.”

In fact, I am surrounded by women in state services and the public school system, each of whom is my jailor: case managers and program coordinators; program supervisors; principals; classroom teachers; special education teachers and therapists; nursing supervisors and other high-level bureaucrats. None of them believe that I should be free to have a normal life. My job is to take direction from each of them and not complain or whine. These women dole out the minimal supports the State is willing to grant. Only one or two have taken me aside to say this is unfair. Women professionals in the school system have openly mocked me for advocating for my son, for believing that he should be taught to communicate.

I am a poor unfortunate. I am not their equal. My college and postgraduate degrees count for nothing. I am a “mom,” that dreaded word that means brainless idiot. I need to sit down, shut up, do what I am told and stop being hysterical or, it is frequently whispered, these women can cut back on my nursing hours and school supports.

When Hillary Clinton talks about what she’s done for women and children in this country, she talks about the Children’s Defense Fund and CHIP. These programs are for typically developing children — those of us with disabled children are funneled elsewhere. She likes to bring up women in third world countries, which is honorable, but her talk about women who do not share the privileged lives of those who have made it to the top is a bit condescending: We need “help,” not equal rights, not freedom from servitude or the like.

Her autism plan is an example of everything that’s wrong with the establishment mechanisms for providing care for disabled children: Pick one cohort of disability with a high profile and many voices and offer a lot; do that at the expense of all other types of disabilities; pat yourself on the back.

So what does Hillary Clinton understand about women? She seems the epitome of upper class PTA moms I’ve had to deal with: people who worry my child might take something away from theirs, always calculating how expensive my kid is and how that’s just not fair to those who can “offer” something to society.

Honestly, many of my male friends understand why it’s so painful for me to have my freedom and my own human rights taken away (let alone the human rights of my son) — they cannot fathom it. They get that, were they in my shoes, they’d be mad as hell.

Women see it as a matter of course, and we accept it. We put down those radicals among us who dare to speak out against the system as hysterics, as unfortunates in need of help, not our human equals.

And I saw that in Hillary during an early debate with Sanders when she now-nowed him by claiming that nobody wanted to get back into the healthcare controversy. Nothing contentious now on behalf of women with children. It’s not worth it.

When and if she stops thinking of women like me as needing “help” and begins to see me as an equal citizen, maybe then I’ll vote for her.

Jeneva Burroughs Stone is an essayist, poet, blogger of the rare & unknown, practical g/i nurse, interpreter of EOBs, queen of medical-necessity letters, unlicensed PT, knowledgeable wheelchair mechanic. She has a PhD in Renaissance literature with a focus on gender and sexuality, has taught high school and college students, and worked on Capitol Hill and as an editor in higher education policy.

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45 Responses to “Women voters and that “special place in hell””

  1. Hellen Damnation says:

    He’s your kid! Perhaps people would be more supportive if your behavior (in the comment thread too) was not so entitled and hysterical. No one owes you anything!

  2. emjayay says:

    Thanks John. I didn’t get the least bit heated and neither did the other commenter who was repeatedly slimed in every imaginable way by the blogger. The blogger not only got heated and went far off the rails from the very beginning. We didn’t. And then I was also slimed by a Moderator.

    I totally understand you being judicious and not wanting to be diverted by this ridiculousness, but that’s what happened.

  3. JS says:

    Your words: “You are imposing a stereotype upon me.” That’s an insulting attack on me. All you needed to do was say “perhaps I was unclear, let me clarify”.

    Re-read your own comments. They are full of insults and attacks. And I see a lot of anger in your post and your comments, directed towards people. I assume this is unintentional. But it is behavior that causes me to distrust you as a writer. Please don’t attack me, as you did a previous commenter, as insisting that women aren’t allowed to be angry.

    I highly recommend that in the future you avoid references to your Facebook like count.

  4. jenevastone says:

    I replied to you thoughtfully and completely in a neutral tone. I wrote about my personal life and you asked personal questions about my marriage. I answered them. I even said you and your wife were right about the issue of whether/how/if women support other women and pointed out that this exchange had prompted other thoughts about feminism that were really interesting. We simply disagree about whether Clinton’s attempts to reach out to women as women have been successful.

    Only 3 people have been unhappy with my post and it has received close to 120 Facebook “likes”

  5. JS says:

    There’s something wrong with you if you feel a need to write a small novel in reply to my comments. You went ahead and attacked – again. I did not put some stereotype on you. You said very clearly in some comment or your post itself that you can’t use your Ph.D. In literature to work. You are the one who said you are sacrificing your career. That’s why I asked, if it was your husband who was at home full time, would that change the narrative. Stop attacking people.

    Go read you highly defensive replies to comments. You put a personal and very opinionated post on the Internet. And then, you attacked people who disagreed with you. Or, who just didn’t understand what you are trying to say. I don’t trust you at this point. I won’t read your posts again. If so many people don’t understand your post, maybe you did a poor job of communicating.

  6. Blogvader says:

    My jaw dropped to the floor when Hillary openly advocated for sticking with the health insurance industry, the same health insurance industry that is price gouging so many of us to death. Hillary also opposes a living wage, and Trump does too, but it feels like a true betrayal coming from a self-professed liberal.

    Suffice it to say, they can nominate her if they like. I’ll vote Jill Stein again.

  7. Woah, finally got to checking out the comments. I hope everyone can step back and bit and get back to the main topic, dispassionately. I know Jeneva, and she’s good people. I don’t agree with her conclusion that somehow this is Hillary’s fault, but she has the right to make the argument, and you have the right to disagree with her. I also know MGiltz, he’s a longtime friend, and a good guy. And Emjayjayjay… is a longtime commenter. I think comments being comments everything got kinda heated when it didn’t need to be. So please try to step back a bit. I hate to see people I know and like fighting :) Thanks.

  8. crazymonkeylady says:

    I understand. Thank you for your answer. No respite care at all. That is inhumane to you and your family. Peace.

  9. jenevastone says:

    The state makes me provide skilled nursing care to my son without pay. He is now an adult. They do not offer me an alternative for his care.

  10. jenevastone says:

    1. I don’t have personal anger toward Clinton–perhaps toward her positions in some cases. She seems like a perfectly fine person. I don’t think that’s expressed in the article. I talk about reasons I would or would not vote for her. I was angry at what Madeleine Albright said, and she said that women should vote for Hillary because she is a woman because “there’s a special place in hell for women who don’t support other women.” Clinton indicated agreement with that statement when it was made. I disagreed with that because I don’t see that she necessarily supports all women’s issues because she is a woman. She did not support gay marriage until 2013, for example. She does not support a living wage, which affects women because more women work for minimum wage than do men. I pointed out that she did not show any apparent support for the women who are in long-term caregiving roles, and that her autism plan is one demonstration of this because it does not address childhood disability issues globally–and, yes, most long-term caregivers are women. The crux of what I said seemed quite clear to my editors: don’t say, even in jest, that women who don’t vote for you should be in hell if you haven’t demonstrated that you support women in all their own different walks of life. Women are as diverse a category as men.

    2. Women don’t necessarily support other women, often because they are women. Some women are Republicans and they do not support abortion rights or birth control, direct attacks on women as a category. Issues at my son’s school were brought closer to resolution when we hired an advocate and my husband began saying the EXACT SAME THINGS I HAD BEEN SAYING and going to the meetings instead of me. The teachers (all women) found a man more authoritative. I think it is in fact clear to most women that the phenomenon of women failing to support women and the needs of other women is generally true.

    In fact, nowhere do I say that I blame Hillary Clinton for my family’s problems simply because she is a woman. She is a professional politician, and professional politicians may, in fact, be justly criticized for the policy positions that they take. She said in a public debate while running for the office of president that she would not, as president, want to revisit the healthcare debate (primarily the fight over universal health coverage, or single-payer) because it was too controversial. I find that disappointing, and I think I’m justified in suspecting that she might find any healthcare issue too controversial or divisive (I believe she used that word).

    I do not believe that Hillary was in favor of single-payer or universal healthcare in 2008, the last time she ran for President. That she may have been in favor of such a plan in the early 1990s or proposed a complex legislative plan for such over two decades ago doesn’t mean those views are consistent with what she thinks today.

    I am not directing my anger about my unfair family burden at Clinton because she is a woman, but because she is a politician who wants other women to support her because SHE is a woman, yet she seems unaware of all the situations women face in society and does not have policy (yet) that matches those issues and needs. There’s an irony there. So you and your wife are right: you don’t support someone just because they’re a woman. Other women don’t support me. And all of this brings up some interesting issues that I’d like to write about at some future point: we may soon have our first female chief executive. What DO we expect her to do in terms of supporting the diverse variety of women’s issues and rights? What IS feminism? Is there anything universal or unified about being a feminist? Our country has long had a man and a group of men at the helm of the various branches of government–issues that affect women more severely than men have long been ignored. Would or will that change as women become president, speaker, senior senator, supreme court justices with a majority vote? You might notice if you go back and re-read what I wrote that I talk about my rights in terms of being a human being, not a woman.

    2. I do work. You just assumed I did not because I said I was a caregiver for a disabled child with high medical needs. You are imposing a stereotype upon me. In fact, the State of Maryland only provides home nursing care, even when needed overnight, when BOTH parents work. My husband is also a caregiver, but we split responsibilities differently because his work is more highly remunerated than mine is.

    I only mentioned that I was not allowed enough nursing hours to pursue the work for which I have been trained, not that I did not work.

    3. Which brings me to your framing of our situation (which was incorrect): you indicate you think I made a “choice” to be a caregiver, that my husband and I might “choose” to reverse roles. “Choice” indicates to me that one could as readily do one thing as another. I don’t find that to be true when people are in very difficult circumstances. One makes “decisions” (as opposed to “choices”) by considering a variety of constraints. All options are not open.

    If my husband were the longterm, jobless caregiver and I were the breadwinner, this would still be the same article: why should any human being be compelled by the state to do unremunerated labor in perpetuity? My son requires 24-hour care–thousands of people across the country require 24-hour care. My son is now an adult–I said I’d been doing this for 18 years. The federal government is forcing states to close down the institutions that used to care for disabled persons who required 24-hour care because states are now required to provide care for persons with disabilities in community and home settings. That is not happening because states are taking the funds from the closure of institutions and the money is not being put into home care. States are instead conscripting parents to do the gap work, often by threatening to place the child or young adult in a nursing home for elderly persons, or in a group home that is not equipped to provide full-time medical care. Often states claim that if parents are “available” to do the work, meaning that they are simply at home, parents are obligated to do work that the state would otherwise pay someone else to do–and, trust me, caregiving is NOT the same as parenting and involves quite a lot of work, both hands-on and administrative.

    4. Which brings me to my final point: what is it about the situation of a female caregiver pointing out the political issues and policy failures with caregiving so deeply upsetting to so many people? Many have referred to my “individual” situation, as though caregiving is a private rather than a public situation? “Help” is not provided to me as a matter of charity or mercy–it’s a matter of public policy regarding the situation of persons with disabilities, many of whom cannot live in this ableist society without medical supports and caregivers? Who cares for persons with disabilities and how they are cared for, in terms of the work that is required, is a public matter–to say that it is not borders on the discriminatory. People with disabilities must be able to live public lives within their communities, and the issues involved cannot simply be said to be a private matter, relative only to their parents and the means their parents have or do not have.

    The word “caregiver” is really the only one we have to use for a person who supplies labor to help a person with disabilities adapt to an able-bodied environment, whether that’s simply survival and staying alive or participating in the community in various ways. Unfortunately, “care”-giving has private, maternal connotations that confuse and conflate loving another person/meeting their emotional needs with the actual “work” (i.e., labor that is typically remunerated).

  11. Moderator3 says:

    I apologize. I interpreted “blog posters” as commenters. In a discussion with fellow moderators, Mod 4 seemed to interpret it the same way. Now that you have used the word “blogger”, it is clear you did not mean commenter. Now, here is a second apology: sorry we can’t help you. You do need to contact the editor, Jon Green.

  12. JS says:

    It is clear to me that you have the sympathy of your readers, and we are all in favor of a health care system that doesn’t require anyone to be a full-time caregiver for any family member.

    And I do not understand why you would blame a woman who’s never been in a position to make that happen. It’s a male-dominated political system to start with. I find your personal anger towards Clinton to be misplaced and bizarre. That’s how it’s coming across to many of your readers. I am being honest. I don’t get it. I don’t understand at all how you can take out your anger at this injustice at a single person at all, let alone Clinton.

    Your husband works. And you do not, so that you (not your husband) cares for your son full-time. How would this post be different if you reversed your choice, and you switched roles with your husband? Would it then just be an article about how a family is unfairly burdened by our lousy healthcare system? Rather than a woman let down by a single female politician?

    As a progressive and a female Ive been totally ticked off by this whole “women supporting women” thing. My wife and I (that’s 2 middle-aged women) were both supporters of Obama, and then Bernie. And we’ve just recently decided that we are OK with supporting Clinton. The fact that she’s a woman hasnt had much to do with it. So we’ve been outright offended by a lot of this. And I still cannot wrap my head around why you are directing your anger about your unfair family burden at Clinton, because she’s a woman.

  13. emjayay says:

    Mud slinging? Where exactly? Please continue….

  14. jenevastone says:

    Oh, please. Enough of your mud-slinging. I agree with our moderator.

  15. emjayay says:

    I’m sorry but you have no basis once again for imagining things like that the two of us are unfamiliar with this world. I don’t know about the other commenter who was also the subject of your largely baseless attacks, but I am a former special education resource room teacher, including a classroom for the more severely disabled. I was the part time caregiver for my parents for years until their deaths, one of whom years after a series of stokes and suffering from dementia. Is that enough for you?

    None of this experience is of course necessary to justify anything I wrote, but there it is.

    And sorry, but I didn’t say you are illogical. I did say that some of what you wrote was illogical, because it was.

    This whole thing is bizarre and extremely disappointing.

  16. emjayay says:

    Your posts are well thought out and substantive contributions here. Neither one of us deserve the distorted, often illogical and defensive personal attacks by the blogger. I hope Joe Aravosis is paying attention. I’ve never seen anything like this here in all the years I’ve been reading and occasionally making what was hopefully a positive contribution, compliment, little joke, or some combination. It’s all very disappointing.

  17. emjayay says:

    Another persona attack does not refute anything I or mgilz wrote, or justify all the nonsensical defensive personal attacks on both of us for about the same things by the blogger jenevastone (who I don’t remember writing here before, but maybe has on occasion).

    And what famously mudslinging blog is it that I comment on all the time? Washingtonmonthly? Talkingpointsmemo? JoeMyGod?

    What has happened to this blog I have been reading and telling everyone about all these years?

  18. crazymonkeylady says:

    I’m not sure I understand. Please, let me understand this. I think you’re saying that the state makes you work without pay (so called volunteering) at an outside job to ‘pay them back’ for your son? Or are you saying that your son is a full-time job without pay? Being a full-time caregiver is very difficult. You need relief and time for yourself. That is not selfish. It is a necessity for human beings. And it sounds like you get no respect from these women. Thank you in advance for your patience with my inquiry.

  19. mgiltz says:

    Nowhere do I suggest women are natural caregivers (as opposed to men). Nowhere do I suggest you should buckle under emotional coercion to stay in line so I don’t have to pay taxes and can benefit from your unpaid labor.
    Nowhere do I suggest you should be forced to choose between yourself and your child’s safety.
    And I think it’s not only some fantasy universal health care system that the US will never have that could correct this issue. Wouldn’t your son be receiving the care that is his basic civil right as a human being in Canada? And in many other countries? Universal health care is not some Shangri-La, it’s in place in much of the world. I’m sure each system is imperfect. But it would surely be a hell of a lot better than what we have in the US now and even that is better than what we had before Obamacare. I do know that my aunt in Canada had a lifetime of serious medical issues of an extraordinary and ongoing nature (though not to the level of your son). Nonetheless, she was literally in and out of hospitals her entire adult life and received extraordinary care easily worth millions and millions if not tens of millions. She was a social worker for a charity she herself started and could never have paid for any of it so thank goodness for the universal health care in Canada. I think the right wants us to believe such is “impossible” here but it’s not true. Clinton pushed for it in the 1990s.

    Again, I think the extraordinary pressures you face are unconscionable and I support candidates I believe would work towards alleviating them. No one should have to give up their lives or be destroyed financially because their child is ill. Just as no one should have to sell off their only home and drain their savings before a spouse can be admitted to a decent nursing facility and a thousand other unfair actions in America today that are wrong and must be changed. You can claim some other unfeeling, monstrous attitude on my part but nothing I’ve said is meant to carry that message and reading back over what i wrote I don’t see what would make you ascribe them to me.

    The most pointed thing I said was that it “didn’t make sense” to demonize Clinton and that hardly seems like vicious flame-throwing or insulting. Your post seemed focused not on health care as a universal right and how it’s affected your life but mostly on Clinton, Madeline Albright’s comment (which she apologized for, rightly) and how Clinton and seemingly every woman in power you’ve dealt with has been at best indifferent or made your situation worse. That was what I tried to address. Yes, in the primaries she has taken the stance that with the current and likely Congress after the election universal health care is not going to spring into being. I disagree with her. Universal health care should be the stated goal since most other countries have it and if it becomes an issue maybe the coattails of a Democratic candidate facing a nutter like Trump can indeed bring about a majority in the Senate and House. (Unlikely until redistricting is taken out of the hands of politicians but still possible.) At worse, pushing for universal health care might lead to compromise and improvements Sanders would be able to push through. Clinton also doesn’t support a $15 minimum wage (I think she’s up to $12), has been consistently too hawk-like in foreign policy for my taste etc etc. Nonetheless, I will heartily support her if she’s the nominee because I’d rather she than Trump choose the next two or three Supreme Court justices, to raise just one of many issues. And while I disagree with her on universal healthcare (and disagree with you on its feasibility in the US), I can’t look at her record as a public figure for the past 40 years and say she doesn’t give a damn about health care or women.

  20. Silver_Witch says:

    It is not true – regardless of what Hillary says. Mom’s are working long hours – just the way day care providers are working long hard hours. Minimum wage is not enough.

  21. quax says:

    You have my sincere sympathy for this hellish situation. This should be a burden shared by society. Stay strong.

  22. Moderator3 says:

    All moderators have been here for at least seven years.

    Any other blog, really? I have seen you on a blog that is known for it’s mudslinging.

  23. jenevastone says:

    That’s enough. Really. I am not illogical and I resent the implication. Actually, emjayay, my apology may have been premature. As I look back over what you wrote, you said, discussing regulations, “which are designed to allocate the inadequate money they have to spend as fairly as possible, and spend money they don’t have on you.” That’s a personal attack. And it was designed to make me appear selfish and, therefore, invalidate my argument.

    In terms of what mglitz said, “While unpaid work is a very valid and complex issue, it doesn’t inherently follow from the situation of a parent with a child that needs 24 hour care.” Why not? I am being asked to do for free work that the state pays other people to do. It’s not about the “caring” aspects of caregiving, it’s about the work aspects of caregiving, which are conflated when we discuss “caregiving.” It strikes me that you consider caregiving a part of a woman’s natural duties. Maybe it isn’t. Parenting a child and caring for them when they are occasionally ill is quite different from providing nursing care for that child, the sorts of things that people do in hospitals. And also different from working with the immersive administrative burden of dealing with state agencies, multiple specialists, pharmacists and others.

    This isn’t about wishing for an ideal healthcare system that will never happen, nor is it about demonizing Hillary Clinton. I observed that the women in control of resources do not truly support other women. This is about human rights for children with disabilities, people with disabilities, and those people who care for them. I no longer accept arguments about limited resources as a reason for denying people the rights of free association, freedom of speech within a government system, and freedom to come and go as one pleases. Or access to basic adaptive equipment that allow persons with disabilities the means of moving freely within an ableist society.

    This is a political struggle that long-term caregivers have been forced into for decades–Hillary Clinton is a professional politician. I can question her judgement, question her feminism without being accused of character assassination. Caregivers wanted to keep their children out of institutions in the 1970s–state supports were provided that allowed them rights as general citizens. These rights–not budgets, not policies and not plans–have been gradually eroded as state legislatures, both Democratic and Republican, have decided that a way to save money is by making parents do the work that was originally provided at pay scale for other workers. The Obama Administration has, justly, been forcing states to close institutions, reduce their waiting lists for services, and provide the home care that has always been part of the moral bargain of keeping a child with disabilities at home. States, both Democratic and Republican (I live in Maryland, which has been in long-term control of the Dems) have closed institutions and shuttled the money elsewhere. The Olmsted Decision by the Supreme Court states that adults with disabilities may live in the community if their physicians agree it is best for them and it is their wish, and the state is REQUIRED to provide all care.

    What I sense in your responses to me over our discussion is that there is some requirement that I be altruistic to the point of personal extinction. Which is what I mean when I suggest that you both suggest I am not entitled to a life of my own as a free citizen in this country. When a child becomes 18, parents are no longer financially responsible for their children–that is part of U.S. Code. Except that parents of adult children with disabilities are being pressured to continue to be financially responsible for their children forever, at the risk of their own health, retirement and participation in society. I have been told that the only way Maryland will provide 24-hour care to my son is if I legally abandon him. That’s emotional coercion to keep me in line. We are being forced to choose between ourselves and our children’s safety in a way no other parents are pressured to do. Legally, Maryland is not allowed to deny my son 24-hour care because the state program he is in is based on his needs: he needs 24-hour care and has been assessed as such. But they bully us by talking budget and making us feel selfish, and use false claims that our time is not a unit of value–they assign services by coyly asking us when we are “available” to care for our son, meaning doing the nursing work. Any time we are generally home is when they consider us to be “available.”

    This is a world with which the two of you are unfamiliar. I appreciate that you are trying to make this world familiar to yourselves by analogizing it with what you experience, but you are making assumptions and value judgements, ignoring what I say and dismissing it as illogical. That is not fair and not right and not what I expect of other people.

  24. emjayay says:

    Sorry. But too little and too late.

  25. jenevastone says:

    You know what–I apologize. I am exhausted today because my son is sick (we get less care when he’s sick, ironically), and I did conflate what another commenter said with what you initially said. You’re right to think of finding something more productive to do, such as vacuuming. I do take issue with the “blame” bit, though. Some of the women who patrol my situation CAN change things; they just don’t. As for Hillary, I do expect a lot more from her feminism than what I hear her say, which is she wants to avoid controversy over certain issues. I don’t feel I blame her as much as I point out the irony of her suggesting women who don’t vote for her should be in hell, when the complexity of oppression women face is something for which she has not articulated an overarching policy direction. That is, her support for women is programmatic–plans for various constituencies, rather than bold statements about the rights of women. I do not think, though, that she would support me as another woman. It would be about money and budgets and “help,” not equality because I am concerned that she buys into the cultural stereotypes of what women are expected to do for free at the expense of their own liberty. She’s from another era, not mine.

  26. emjayay says:

    Well, join the club, buddy. You also just wrote about a lot of what I was going to address before I decided the vacuuming or just about anything else would be way more productive. Thanks.

    Maybe someone needs to be overall editor here these days. Random defensive illogical and unfounded personal attacks on multiple commenters by blog posters was not up to now a feature of Americablog. Or any other blog I read.

  27. mgiltz says:

    I am a supporter of Bernie Sanders. But I wondered why you would demonize Hillary Clinton, especially on the issue of overwhelming medical expenses and the need to provide unpaid care for your child because like most people you can’t afford the exorbitant cost of round the clock care. When it comes to healthcare and paid leave and pushing for men to carry their fair share of the burden, she’s been fighting that fight for decades. She may not take the positions you and I advocate for, but she’s not an uncaring monster.

    While unpaid work is a very valid and complex issue, it doesn’t inherently follow from the situation of a parent with a child that needs 24 hour care. If we had the health care system in this country that you and I want, that care would be provided free of charge for anyone that needed it. One can easily imagine universal health care that would accomplish this. That would NOT address fetching water, cleaning the home, preparing meals, doing laundry and a million other areas that fall under the rubric of unpaid work and which often fall unfairly on women around the world. But it would perhaps address the particular needs of people who need 24 hour care, lessening but not ending the demands on their family and friends.

    I don’t believe free health care for all as a universal right is a women’s issue. I was a caregiver for my father (for a very modest short amount of time) and it’s a male (your son) that needs the care. If he was the child of a single father, it clearly wouldn’t be a women’s issue, unless one assumed the father never would bother to be the caregiver and responsibility fell on a sister or grandmother or some such person. Happily, the idea that only women can raise children, be caregivers etc is fading away. And even for single people with no family, 24 hour medical care is a right. I’m sure you care first and foremost about the care for your son, which is what I’m addressing. Surely universal health care for all would address this particular issue.

    Finally, I don’t know why you’re attacking me. I didn’t belittle your situation or use demeaning or infantilizing language. I didn’t as you say blame you for your situation. I didn’t tell you to calm down. I don’t know why you would attack me for benefiting from your unpaid labor by getting tax breaks and better schools for the children I don’t have. (I have consistently voted for politicians who would raise taxes for much-needed services and lower spending on unneeded services like grotesque defense spending. I don’t have kids. Etc.) I don’t assume to know everything about your situation beyond what you described. Why would you treat me differently? I believe home care and hospice for the dying is far superior to institutions and hospitals whenever possible. AND I believe it’s cheaper. But I also know how impossible home care can be even with family members ready to be there 24 hours a day. (We literally couldn’t turn my father to keep him clean and had to finally move him into a nursing home, happily only for the final three weeks of his life.)

    I don’t think blaming someone who discusses the issue politely as mocking you or suggesting they benefit from your slave labor helps the issue. (To which you might say, but everyone benefits from my forced labor! To which I might say, not willingly if I have been fighting and arguing for years to make such forced labor less likely or a thing of the past.)

    The cutting back in home support is just one of countless areas where those in power and especially the right wing have been chipping away at common sense and common decency for decades. As a banal example, they cut back on employees and offices for regional Social Security sites, then when people face longer and longer waits and poorer and poorer services, they say, “See SS doesn’t work” and cut its budget even further. Schools, roads, bridges, home care, the list goes on.

    Does Bernie Sanders champion the issue of home care in a way you can support? Then we’re both on the same page, even if I wrongly reduced your argument to what I believed was the central point: Clinton doesn’t currently support universal health care (as she did in the 1990s) as politically feasible and thus you won’t support her.

  28. emjayay says:

    One can’t argue with someone who just makes shit up, including a lot of things i was supposed to have said and things I was supposed to have thought and other things I will think and say some time in the future. So I’ll just have to stop wasting my time.

  29. jenevastone says:

    I don’t understand your resistance to the rights of women to live their lives fully and freely. And the 13th amendment issue IS what is starting to be fought out in court about unpaid caregiving. I simply don’t understand what you think this is about? And why you need to slam me with “expecting more” from posters? Just because I say something controversial, you want to tell me it’s illogical. This seems to me an attempt to shut me down. Thousands of American women live in the situation I have described. We are locked in our homes without the guarantees the Bill of Rights allows.

    And this is not about the ACA. People with disabilities should not be a separate consideration when it comes to healthcare and nursing care. My son should not be reliant on whatever charity society is willing to dole out. He has rights as well.

    We are obviously talking at cross purposes because you’d prefer to believe that these situations are an exception and could never happen to you. You don’t get it. I feel sorry for you.

  30. emjayay says:

    I didn’t say that, and I did not blame the messenger either. I didn’t call anyone anything, including “unfortunate”. And sorry, but it’s not logically about any of the things you just said it’s about. And it’s not about ME either.

    I have come to expect a lot more from Americablog posters, though.

  31. jenevastone says:

    Oh, I forgot–in your world, women can’t be angry. It’s not nice.

  32. jenevastone says:

    Funny, but you’re doing just what I say women do in my article–you don’t like the message, blame the messenger. This isn’t just about me–typical female feint, call me “selfish”–and it’s about violating the 13th amendment of the constitution, which abolishes slavery and involuntary servitude. It’s not about begging more money for disability issues. It’s about discrimination and it’s about taking away the lives of other people for YOUR own gain. So YOU don’t have to fund or do these things. I am not “unfortunate”–I am being denied rights and a life so people like YOU can enjoy yours.

  33. emjayay says:

    So the women (because they are women and you are a woman) health care administrators should not follow the regulations they are supposed to follow which are designed to allocate the inadequate money they have to spend as fairly as possible, and spend money they don’t have on you.

    And Hillary Clinton as Secretary of State and before that Senator for a term should have singlehandedly gotten a bill through Congress to double the money spent on special needs health care support. And she never put a lot of work into getting comprehensive health care for everyone in place twenty years before it actually happened, and then in far less than ideal form because of actual Republicans actually elected by the people of the country to congress. And she will definitely do nothing as president to do anything in this area either. Got it.

    Your situation is obviously extremely difficult and unfortunate. We should obviously be spending a lot less on military adventures and bases and get rid of the huge corporate tax loopholes so we can afford high speed rail and much more comprehensive health care and many other nice things other countries seem to have. Heck, if we hadn’t gone on those George W Bush adventures, not to mention the equally stupid Viet Nam one all those years ago the VA would need half its budget and that could in an ideal world be spent on everyone else’s health care instead. But it’s not Hillary’s fault and it’s not other women’s fault either.

  34. jenevastone says:


  35. jenevastone says:

    Women with children will never get the equal pay for equal work Hillary proposes because we are already considered to be incapable of delivering equal work; therefore, we do not “deserve” equal pay.

  36. jenevastone says:

    You’re right.

  37. jenevastone says:


  38. jenevastone says:

    That’s not the point. The point is that women, in fact, don’t support other women. And I’ve experienced this. Telling me I shouldn’t blame the people who have the power to correct the situation strikes me as an odd response.

  39. jenevastone says:

    This is not an argument about the ACA. It is an argument about women’s rights, and you seem to suggest I should be happy with having none. The ACA doesn’t even cover home nursing care, nor does any major insurance plan outside the ACA. And when a single group of people–the thousands of American women who take care of persons who are ill, medically fragile, and disabled is forced into indentured servitude while politicians like Hillary Clinton look on and treat us as poor unfortunates who need sympathy rather than equality–that’s unAmerican. This situation doesn’t begin and end with me (you’re behaving just as the people I described in my article, blaming me for my situation because I’m speaking the truth, telling me I should, what “calm down”?)–people like you get tax breaks and better schools for your typically developing kids because the State is trying to save money by emotionally coercing women into unpaid labor. The diminishment of home supports has been going on for decades as institutions have been closed (thank god) and the money saved has been poured into other parts of state budgets, rather than being used for home care.

  40. emjayay says:

    Yes, as a society we should do much better at supporting people in your situation, not to mention older people who need medical and other support, among others. I don’t know why you seem to be blaming the women whose job it is to administrate the care that is available, or blame Hillary Clinton for your situation and imagine as president she would not do what she can to address all these kinds of situations. Hopefully a Donald Trump or Cruz candidacy for president will help elect Democratic reps and senators and make improvements in this area as well as many others possible.

  41. mgiltz says:

    You’re in a nightmarish situation. Lives should not be destroyed and people ruined financially because of catastrophic illness. But I’m not sure why you target Clinton as the one indifferent to your situation. I support Bernie Sanders. I’ve given him money monthly. (And whomever it is, I will support the Democratic nominee.) I agree with him that universal health care is the future, perhaps with the first step of letting people buy into Medicare at a certain age no matter what state they’re in. But that doesn’t change the fact that Clinton pushed for massive healthcare reform in the 1990s. It failed but certainly paved the way for Obamacare, the most significant addition to the social safety net since FDR. While it falls short for your particular (and heartrending) needs, it has already helped millions: people getting healthcare, ending the practice of denying insurance to those with pre-existing conditions, ending the monthly and annual and lifetime caps on care which is absurd, ending the trap where people were afraid to leave their job or state because doing so would mean their healthcare coverage would be “end” and they’d start from scratch (even if staying with the same company for insurance) and thus any issues they had like high blood pressure suddenly became “pre-existing” and wouldn’t be covered and on and on. To which you might say, None of that helps me. But if it vastly improves the lives of millions of others and we can hope and expect the law to be improved and built on for years to come (as Social Security would be), does your analysis of whether it’s good begin and end only with you? Clinton has fought for better health care and paid medical leave and similar rights for women and men and children her entire career. She helped lead the way for seeing health care as a basic right. Treating her as the enemy or as coldly indifferent to your plight just doesn’t make any sense. I agree with Bernie and candidate Obama: single payer health care system. I’m not sure even that would magically solve the massive problems you face. But I do know that the election is not going to sweep Democrats into a majority in the House and Senate and make achieving that possible. I’ll vote for Bernie in the NY primary. But again, a lifetime of fighting for better health care, health care as a basic right, women’s expanded roles in the workplace and more counts for nothing?

  42. 2karmanot says:

    It is so true, caregivers are the indentured, underpaid, and institutionally abused life-savers of America. The scandalous and outrageous indifference to our plight and the often heroic sacrifices and diligent attention we bring to life and death situations shames America. Thank you for sharing your story.

  43. 2karmanot says:

    Exactly so!

  44. nicho says:

    The notion that Hillary’s success will somehow help all women is the same as the thinking on the other side of the aisle that some billionaire’s success will help working people.

  45. Silver_Witch says:

    Very well said! If we don’t really care about the equality and freedom of all woman none of us will be free. Hillary is not that Candidate. My son deserved the same education as the wealthy li ing in the neighborhood next door. Your son deserves that same education. My son deserved quality daycare that didn’t cost half my salary. Your son deserves the same daycare.

    Americans should be ashamed of not caring for each and every citizen!

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