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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