Category Archives: reproductive justice

Human Rights Watch Reports Atrocities Against Disabled Women and Children in Uganda

Content note: This post includes discussions of sexual and physical violence committed against women and children with disabilities.

Last week, Human Rights Watch issued a report, ‘As if We Weren’t Human,’ on the violence, isolation, and discrimination experienced by women and children with disabilities in Uganda. Northern Uganda is emerging from decades of conflict, and as the country works on rebuilding itself, disability rights advocates are very concerned about the role of people with disabilities in Ugandan society. The report documents the conditions for many people with disabilities living in Uganda, and challenges the government to take a more active role in protecting its disabled citizens.

It’s worth noting that several other African nations are in positions similar to Uganda’s, and the findings of the report may be more widely applicable. The report highlights the consequences of leaving the most vulnerable members of society to fend for themselves.

It is estimated that around 20% of the population in Uganda is disabled. Many of those disabilities are acquired as a direct result of the nation’s conflict; women have lost limbs to landmines, been paralysed by bullets, and have developed disabilities in the wake of things like polio infections caused by a complete breakdown in vaccination programmes. Some women have injuries inflicted during the conflict as punishment, such as having their noses and ears cut off for ‘collusion.’ War tends to be brutal, and it tends to  leave distinctive disabilities behind, both increasing the number of people with disabilities in society and making it easy for people to identify people who have lived through the war, an issue that can come with its own set of problems.

Women with disabilities trying to integrate into society are facing an uphill battle as they attempt to leave refugee camps and return to their communities, find ways to support themselves, and struggle with the fact that many communities have been shattered and the extensive social support networks that once existed are gone now. Poverty is a chronic problem for many disabled women that makes it even harder for them to access services they need. Disconnection and fragmentation of society has very serious consequences for people who need networks of people to survive, including both people who are attempting to establish full autonomy for themselves, and people who need full time care and assistance.

The report also documents that women and girls with disabilities are more likely to experience sexual violence, sometimes repeatedly, and that they lack access to reproductive health services. People with disabilities cannot even get HIV testing to determine if they’ve been infected after being raped. Other gender-based violence and abuse has also been widely documented; as in the rest of the world, people with disabilities are more at risk of experiencing physical violence as well as emotional abuse. Psychological issues often nip at the heels of people subjected repeatedly to sexual and physical violence, creating the risk of a mental health crisis in Uganda.

Discrimination against people with disabilities is also widespread; for example, a woman with HIV named Candace says “I cannot bathe near others. My neighbors think that the water that comes off me has HIV in it. They say I will get the community sick if they touch the water.” Some of the discrimination stems from ignorance, the result of inadequate education and outreach, two common problems in communities torn by war that don’t have the time or personnel to be providing these kinds of services. Other discrimination is the result of unchallenged social attitudes, made harder to challenge by the isolation of people with disabilities. When people aren’t interacting with the subjects of their discrimination on a daily basis, it’s much harder to break down the beliefs and attitudes that contribute to the perpetuation of that discrimination.

The report concludes that the government and NGOs working in Uganda need to take a more active role in ensuring that people with disabilities are not left behind during recovery efforts. This includes actively working on accessibility issues in Uganda, educating government representatives and health care providers about disability issues, and fighting discriminatory attitudes with education and outreach. As it is, people with disabilities are already being left out, and there’s a lot of catching up to do to address the situation before it gets even worse.

Social attitudes like those highlighted in the Human Rights Watch report are not unique to Uganda, nor are they unique to war-torn nations or nations in the developing world. Some of the same problems seen in Uganda can be seen in the United States, for example, where people with disabilities are more at risk of sexual and physical violence than nondisabled people, and where we lack access to reproductive health services and sexual education because of social attitudes about our sexuality. These are global issues, and the globe as a whole needs to fight them. Personally, I would love to see Human Rights Watch generate similar reports for every nation on Earth.

Signal Boost! The Fight For Reproductive Justice

Some of you may know that most of us here are FWD/Forward lurk around at other places doing other things when we are not toiling on the backend here at the humble blog. I happen to spend a bit of my time writing under my actual name over at Change.org’s Women’s Rights blog as the Military Beat Girl.

Two issues involving reproductive justice have passed over my RADAR here and there, and I hope you all will humor me in bringing the issue here to you all, in the hopes that you will give them the appropriate attention, and also in hopes that you might boost them where you have the opportunity.

First: As you may have heard, the U.S. Department of Health and Human Services (HHS) recently decided to pull a Stupak and have collectively taken the decision regarding abortion out of the hands of people who may need to seek coverage in the so-called High Risk Insurance Pools.

[Action Item at the link.]

Basically, it means that, aside from a glaring disregard for women’s health, and no nod whatsoever to the fact that a woman is capable of making decisions about her health care, women who are already medically vulnerable. This rule cuts them off from receiving any abortion coverage whatsoever even if they attempt to pay for it out of their own already strapped pockets.

In short, they do not trust women.

High-risk pools are meant to provide coverage to people who have been denied insurance due to pre-existing conditions, such as cancer, HIV/AIDS, diabetes, and a slew of other chronic illnesses, conditions, disabilities, or diseases. These conditions could make pregnancy potentially harmful, exacerbate the condition, or just plain more stressful to an already stressed body, or even mentally hurtful (though, Obama has made it clear that mental health does not count, eh?).

s.e. smith wrote an excellent post about high-risk pools that I recommend, if like me you don’t fully understand high-risk pools.

Second is a fight that has been dear to my heart for quite some time. It is the ban on abortions in military medical facilities.

[Action Item at the link!]

Illinois Senator Roland Burris introduced an amendment that would repeal the current ban barring women in uniform and military dependent women from procuring abortion services in military facilities, even if they pay for it with their own money except in the case of incest, rape or imminent threat to the woman’s life. The committee approved this amendment and plans to introduce it as part of the Defense Authorization Act.

Currently U.S. military women in countries like Iraq, Afghanistan, Djibouti, and the Republic of Korea (to name a few) are barred from getting abortions by the nature of where they were ordered to go. They are not available in military facilities except in extreme cases, and the the countries where they live have laws against them in most instances. The law discriminates against those women by first ordering them to a country where a service that is safe and legal in the U.S. is inaccessible and then denying them the care they could seek out if stationed there.

Further reading on the military abortion ban.

I now return you to your regularly scheduled reading.

Reproductive Justice is for Everyone, Even People You Don’t Like

There’s a sign on the wall of a local clinic which says, according to my paraphrasing memory:

You have the right to decide if you want to have children or not, and to determine their number, timing, and spacing.

The clinic provides reproductive health services to low income members of the community, and plays an important role in ensuring that people have access to everything from safer sex supplies to prenatal care. I’m a big fan of theirs, and I’m a big fan of that sign, which I think embodies the core of reproductive rights and justice. Everyone has the right to make decisions about their own bodies, and one of the core values of the reproductive rights movement should be supporting people in this. Supporting all people, leading all kinds of lives, making all kinds of decisions.

Educating people so they can make more informed choices. Helping people access services to allow them to carry out the choices they are making, whether that’s a decision to get an abortion or to have a child or to get some birth control. Fighting sexual assault and rape as violations to bodily autonomy.

Recognising that while a choice might not be one you would make personally, you can still support someone in making that choice, and you can still enable that person’s ability to make decisions freely. As soon as we start making decisions about the ‘right’ kind of families and the ‘right’ number of children and the ‘right’ number of abortions to have, the concept of reproductive justice starts to fall apart. Who decides these things? Who is the arbiter of whether someone is making the ‘right’ choices?

There’s one group that gets left out of a lot of reproductive justice discussions: People with disabilities.

I’ve seen the decision to have a child with disabilities compared to child abuse, whether we’re talking about a child with a prenatal diagnosis, or a child born to parents with an increased risk of having a child with disabilities. I’ve seen disabled parents treated as though they are committing child abuse simply by being disabled, and being parents. I’ve seen people act like people with disabilities don’t need access to sexual education, because obviously we don’t have sex. I very rarely see any of these actions labeled as what they are, which is ableism.

Denial of reproductive rights to people with disabilities is ableism. Denial of our needs in the reproductive justice discussion is also ableism. Telling us we don’t belong at the table is ableism. We deserve reproductive justice too, and we have needs that are not being addressed by the current reproductive rights movement.

One of the problems with attempting to bring disability into reproductive justice conversations is that people act like the issues we cite are things of the past; they aren’t important, because they don’t happen anymore. People with disabilities are never involuntarily sterilised to prevent them from having children. Children are never taken from disabled parents. People are never shamed for deciding to continue pregnancies when a prenatal diagnosis indicates that the baby will be born with disabilities.

Well, these things are not in the past. They are happening right now.

A few recent cases from here in the United States: A child was taken from blind parents, solely because her parents were blind. It took intervention on the part of the National Federation of the Blind to restore the child to her home. The children of a disabled woman were denied visitation rights on the grounds that it would upset them to see their mother. A quadriplegic woman was told she couldn’t be a good parent. These are just three recent, high profile cases where parents were told they couldn’t care for their children because of their disabilities. Believe me, there’s more where that came from.

As for forcible sterilisation, the Ashley X case attracted a great deal of attention in feminist communities, but it’s far from the only one. Last week, we linked to a story about drugs that suppress sexual desire being used in autism ‘treatment.’ In Central and South America, forcible sterilisation, particularly of Indigenous women, is widespread and the United States has a history of sterilising Indigenous women as well. Tessa Savicki, a Massachusetts mother of nine, is suing after a hospital sterilised her without her consent during an unrelated medical procedure in 2006.

If sterilisation of people with disabilities isn’t a problem anymore, how come someone wrote a bill in 2009 to bar forced sterilisation of people with disabilities?

In a conversation at dinner the other night, I had to physically restrain myself when one of the people at the table attempted to argue that a mutual acquaintance was being ‘irresponsible’ by having a child at her age, ‘because it might be born disabled.’ This is not the only conversation like that I’ve witnessed, on or offline.

For people with disabilities, the reproductive justice discussion is extremely personal. People debate whether we should be allowed to have children, people believe that compromising our bodily autonomy is acceptable for the ‘greater good,’ and people debate whether or not we should have been born. For people who were born with disabilities, hearing people claim that parents having disabled children is akin to child abuse is rather appalling.

The thing about reproductive justice is that it’s not just for the people you like and the people you agree with. It’s not just for young, nondisabled, cisgender women who want to use birth control right now and have access to abortions, with the possibility of having children later. It’s also for parents of large families. It’s also for disabled parents. It’s also for religious parents. It’s also for disabled children. It’s also for people who are not interested in having children. It’s for everyone living in a body, no matter what kind of body it is, no matter what kind of life that person leads. Reproductive justice, true justice, should be all-encompassing.

Excluding people with disabilities from the conversation by either being actively hostile or dismissing our concerns is not reproductive justice.

It’s Always More Complicated: The “Justified” Abortion

[Trigger warning for “disabled child = burden” narrative.]

Last night I was reading several pro-choice tumblrs, one of which had linked to “The Choice“.

What makes us human? When is a life worth living? Worth ending? How much suffering is bearable? Is avoiding suffering brave or is it cowardice? When is abortion justified?

Should Fred be born, my wife would never return to work. My daughters would always come second. Some basic research online and asking friends in health roles showed a high chance of divorce before my son was a teenager, the stress of care literally tearing our family apart. Every news article we read showed little or no government support, with charities closing their doors. The doctors were encouraging about support; the real life carers we spoke to, not so much.

I’d never support killing a born child on any grounds. Yet here I was, suggesting death for a child almost born. I may not be a good man, but I’m a husband and a father. Had we not known, I’d be living with Fred’s condition today; but we take the tests so we can act on the information received.

So, let a bad man say the words that will condemn me: Fred’s life would have been less than human. It would have been filled with love, yes, but mostly loneliness, confusion, pain and frustration. The risk to my marriage and the welfare of my daughters was too much. I chose to minimise suffering. For my wife, for my daughters, for myself and most of all for Fred, I chose abortion. It was a choice of love.

I have complex reactions to this that are not really easy to talk about, but the one thing I do want to make clear:

Abortions do not need to be justified.

I know there are strong political and advocacy reasons why stories like these – the so-called “justified” abortion – are told whenever people talk about abortion and the law. They are “good” abortion stories, with the happy family, the desperately wanted child, the “horrors” for everyone had the abortion not been performed.

I struggle with these sorts of stories because I don’t know a way to talk about them. I want to talk about the way that disability is discussed in them – always, always, as horrible, as tearing families apart. And yet, these are people’s lives. I don’t think in any way they made a “wrong” or “bad” choice, or a “brave” one, either. They made the “right” choice, in that it was the “right” choice for their family, and I fear that talking about the language used is abusive. You’ve shared your painful story, your very personal story, and I want to now talk about disability and how it’s used to score points in the so-called abortion debate.

And yet, I desperately do.

I deeply resent the way anti-choice advocates point at people with disabilities and talk about how they’ll all be eliminated if we allow abortion-on-demand. The sheer amount of hate directed at Don when he goes to pro-choice rallies by the anti-choice contingent, because they see him as a traitor to their cause, is amazing to me.1

I don’t see these same people at protests and demonstrations about making Halifax an accessible city. I don’t see them at demonstrations about improving health care options. I don’t see them doing anything for people with disabilities except using them as pawns, and I loathe them for it.

And yet, many pro-choice advocates also use people with disabilities as pawns in these so-called debates. They hold up stories of fetal abnormalities as “justified abortion”, as the acceptable test-case, the one they know the general public is likely to agree with. I see no analysis, no discussion, of the ableist nature of this narrative. It’s an acceptable justified abortion because the fetus was abnormal, and who wants a broken child that’s going to ruin everyone’s life?

All abortions are justified.

It troubles me so much that it’s only the “abnormal” fetuses that are okay to use as abortion stories.

[Originally published on my tumblr]

[Note: Things we are not going to do in this thread: Debate whether or not abortion is “okay”. Publish shaming comments towards women who have abortions. Talk about people with disabilities as burdens. Discuss individual actions as though they occur in a complete vacuum and are not influenced by societal attitudes and pressures.]

  1. Of course, they direct more at any pregnant pro-choice women – there’s a video clip from Toronto last year with someone telling a pregnant woman “I hope your child kills you”.

Why I Am Not a Libertarian

Here in the U.S., there’s been a lot of buzz about Rand Paul, son of Ron Paul, winning the primary for Republican senator in Kentucky. Paul is a darling of the Tea Party and largely espouses libertarian values of decreased taxes and decreased government regulation and intervention.

There are some things about libertarianism that I like and agree with. I’m against state interference in romantic and/or sexual relationships between consenting individuals with full capacity. I’m in favor of strong civil liberties and freedom from search or surveillance by the state.

But I do not trust the free market to take care of civil rights issues, primarily because I’ve seen the free market fail to take care of civil rights issues for hundreds and really thousands of years. And I believe that getting the government out of the business of defining and enforcing civil rights would have disastrous results for all but the most privileged among us. And Rand Paul’s espoused views bear that out. Here’s what he’s got to say about LGBTAI rights and women’s health:

Not only is Paul perfectly fine with government prohibiting marriage between gays and lesbians, it bears mentioning that Paul’s anger towards the government for “betraying the medical privacy of ordinary citizens” doesn’t extend to women, whom he believes should be forced to carry unwanted pregnancies to term if state legislators deem it so. He also wants to offer legislation “restricting federal courts from hearing cases like Roe v. Wade.”

This isn’t even a consistent position – Paul is in favor of government intervention in personal relationships, as long as it’s “only” LGBTAI relationships. He’s also in favor of government intervention in personal medical decisions, as long as it’s “only” affecting the decisions of women considering whether to terminate a pregnancy. What he has to say about protections for people with disabilities is even more troubling:

You know a lot of things on employment ought to be done locally. You know, people finding out right or wrong locally. You know, some of the things, for example we can come up with common sense solutions — like for example if you have a three story building and you have someone apply for a job, you get them a job on the first floor if they’re in a wheelchair as supposed to making the person who owns the business put an elevator in, you know what I mean? So things like that aren’t fair to the business owner.

Yes! Let’s let the free market take care of rights for people with disabilities! Because it’s for damn sure that even with the existing governmental protections for civil rights, companies are taking an unbiased and totally not ableist at all approach to employing PWDs and even accommodating them as customers! So eliminating those marginally adequate and woefully underenforced protections would surely have the effect of enhancing overall liberty and freedom! That is, if you are looking only at the liberty and freedom of the already privileged.

There has been a lot of discussion on this site of how entrenched institutional ableism results in discrimination against PWDs, makes them more likely to live in poverty, lack employment, and have disproportionately negative health outcomes. That’s the status quo that would be preserved if government intervention and regulation of the rights of PWDs were to end. But there are definitely people who are benefiting from the status quo – white, cis, hetero, TAB men, predominantly. And we should be very clear that limiting government intervention would primarily preserve the status quo that benefits them.

Which is why you should not be surprised by two facts: 1) Rand Paul is a white cis hetero TAB man, and 2) I strongly disagree with these political ideas. While there are some areas in which I support limiting government intervention, my overall goal is to maximize rights of historically disadvantaged and relatively unprivileged populations, whether it takes more or less government to reach that end.

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

Widespread (rather than individual) centralization of birth control in feminism alienates and marginalizes their already problematized bodies: trans women, intersex women, older women, women with disabilities that affect their reproductive system, asexual women, women who want to get pregnant. Not to mention the loaded history of otherwise non-privileged bodies with birth control in light of the eugenics movement.

Eugenia: Siempre eqivocada

The fact is that, with regards to medical care, the old customer service adage is reversed: if the customer is always right, in Bolivia, the patient is always wrong. In Bolivia, where higher education is less of a universal right than a luxury for the few, poorer, uneducated Bolivians are taught to treat doctors and other professionals as their superiors.

meowser: BADD 2010: The Total Erasure of Partial Disability

In order to “make it” at anything I thought was worth doing, you had to be willing to do some serious OT, put in the extra time, go the extra mile, get that extra degree while still working full-time, put your nose to the grindstone. In other words, prove you weren’t just some lazy slacker who didn’t want to work. And I knew I…just couldn’t. And I felt terrible about that, especially when I got into my 30s and realized that all those overworked, underpaid copy editors (and other people who had done the nose-to-the-grindstone thing) now had real careers making real money, and I was still stuck at the McJob level.

Jha: My Invisible Disability

My depression is a setback. It means I cannot be continuously gung-ho about things like I would like to be. It means that sometimes I have to withdraw from the world or be overcome with exhaustion. I am easily fatigued. Some days, I want to sleep in the entire day and not have to face the world. Other times, I imagine being in a situation where I wouldn’t have a tomorrow to deal with. This doesn’t make me a failure, and it doesn’t make me, or anybody else like me, any less of a person deserving basic respect and consideration.

Latoya: Open Thread: Science, Conclusions, and Assumptions

[O]ne of the most common requests for content on Racialicious tends to come from people who work in public health. One issue in particular they have asked me to spotlight is the issue of clinical trials. For many years, the assumption was that the effects of medical conditions and medicine side effects would be similar on everyone, even though the only people involved in clinical trials were white males.

Valerie Ulene (Los Angeles Times): When prescribing a drug, doctors have many choices — too many, in some cases

Nobody wants to be told that he or she has a medical problem that can’t be treated, that there’s no medication that will help. For most common ailments, that’s rarely a problem; the trouble comes instead when it’s time to choose a drug. Sometimes there are just too many choices.

And, of course, there are numerous posts from BADD 2010, organized and collected by Goldfish at Diary of a Goldfish!

Recommended Reading for April 20, 2010

Scott Carney (Mother Jones magazine): Inside India’s Rent-a-Womb Business

Despite the growth in services, surrogacy is not officially regulated in India. There are no binding legal standards for treatment of surrogates, nor has any state or national authority been empowered to police the industry. While clinics have a financial incentive to ensure the health of the fetus, there’s nothing to prevent them from cutting costs by scrimping on surrogate pay and follow-up care, or to ensure they behave responsibly when something goes wrong.

Benedict Carey (New York Times): Seeking Emotional Clues Without Facial Cues

Ms. Bogart has Moebius syndrome, a rare congenital condition named for a 19th-century neurologist that causes facial paralysis. When the people she helped made a sad expression, she continued, “I wasn’t able to return it. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”

Goldfish at Diary of a Goldfish: Blogging Against Disablism Day (BADD) Will be on May 1st, 2010

Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made. [Note: Click the link for info on how you can participate in BADD 2010!]

Max Harrold (Montreal Gazette): Filmmaker in wheelchair says red-carpet rejection inspired film

[Filmmaker Sean Marckos] has it all on video: He and a colleague, both in tuxedos and with their tickets in hand, being hustled out of the famous Palais des festivals in Cannes in 2008 and 2009. They were told they could enter only through a rear entrance, away from paparazzi. “They didn’t want me next to the beautiful people like Brad Pitt and Angelina Jolie,” said Marckos, 31, who has muscular dystrophy.

National Center For Lesbian Rights (NCLR): Greene vs. County of Sonoma et al.

One evening, Harold fell down the front steps of their home and was taken to the hospital. Based on their medical directives alone, Clay should have been consulted in Harold’s care from the first moment. Tragically, county and health care workers instead refused to allow Clay to see Harold in the hospital. The county then ultimately went one step further by isolating the couple from each other, placing the men in separate nursing homes.


We Need to Consider More than Universities

There’s a lot of really good stuff out in the blogoamorphia1 about sexual assault on uni campuses. The focus is specifically on USian colleges and universities though Rape Culture exists pretty much everywhere with only slight variation. It’s worth reading, if you’re up to reading about sexual assault at all. (I’m not always.)

Predators are good at target selection. All of them. We see this in the uni rapists who repeatedly assault vulnerable young people. And the analysis of these assaults and assailants is valuable. I hope the attention being focused on this issue leads to real change in how sexual assault is treated by colleges and universities because the status quo is disgusting. Victims are made to undergo ‘mediation’ with their assailants in the name of ‘fairness;’ people known to administrations to be serial rapists face only the most cursory of punishments while their victims often leave, faced with an environment that could hardly be more obviously hostile; the government agencies tasked with reducing rape on uni campuses in the US have hardly bothered to appear to do anything at all.

But I’m a little uncomfortable that the focus is on the most privileged, most visible, most likely to be photogenic segment of sexual assault victims. Not that these people don’t need or deserve attention–they do. (And really I’d like there to be much more awareness that the things cis men do to each other are not HILARIOUS PRANKS but are sexual assault and should be treated as such. Cis men, you have a task: Even if you can’t be arsed to end sexual assault of other folk by cis men, you may wish to end assaults on yourselves by cis men. Hop to it.) I just worry that the pattern we see so often where the most privileged people are centered and marginalized people are pushed to the edges will repeat itself. That sexual assault victims whose circumstances differ will have a more difficult time being heard. That there will be a sense of “Well fuck we already had to care about these college [het cis probably currently non-disabled largely white largely middle-to-upper-class] girls getting raped and now you want us to care about you? Sorry, we’re all out of giving a shit.”

Because predators aren’t just at universities and colleges. All those uni students will leave school eventually. Not all predators even go to uni. They will all be looking for targets. Not only will they choose targets that are vulnerable and have a low risk of incurring negative consequences, they will seek out environments where there are large concentrations of their preferred targets. They will search for jobs where they will be in positions of authority over those targets. Predators that prefer children try to get jobs in schools or in religious settings. Predators that prefer disabled people, mentally ill people, or elderly people look for work in hospitals and supportive care facilities. Predators that prefer sex workers become pimps or police.

Part of the problem is going to be that people will be able to relate to the uni predators better. University-age women are often attractive people by accepted standards of beauty. Raping a pretty young cis woman is understandable–the rapist was attracted to her and wanted to fuck her and wanted to cut through all the preliminary bullshit and get right to the fucking. It’s harder for people to imagine wanting to fuck children or older people or disabled people or crazy people or fat people. Who’d find that attractive? (Who would rape you?)

It isn’t about sexual attraction. A predator’s preferred type of victim may not have anything to do with the sort of people xe finds attractive in non-predatory relationships (assuming xe has any) and may be of a different gender from xer orientation. Cis men who identify as straight and prey on children who read as male by ciscentric standards aren’t necessarily lying about their orientation, even to themselves. Predation isn’t about sex despite there being sexual gratification involved. (Though the predator xerself likely doesn’t understand this.) It’s about the predator making xerself feel powerful by stripping xer victims of power. It’s about the predator boosting xer self-confidence by humiliating xer victims. It’s about the predator feeling safer by making someone else afraid. It’s about hate. It’s about entitlement. It’s about controlling the behavior of others. And like all kinds of abuse, it’s about making the victims responsible for the emotions and actions of the predator.

Sex is just the mode of abuse. The choice of victim is about getting away with it.

So how do we not lose track of this? How can we address the issue of rape on university campuses without centering that experience of rape and marginalizing others? How can mainstream anti-rape activists not treat our experiences of rape as Other, as exotic, as something incomprehensible? Because that path leads to paternalism and patronization. It’s not good for us no matter how well-intentioned. It’s the sort of thing that leads to disabled people with ovaries being sterilized without their consent or knowledge at the behest of guardians who simply assume, with ample justification, that they will be raped in institutional care facilities. Since there’s nothing they can do about that (as we all know rape is a force of nature and not an act performed by humans capable of changing their behavior2) they can at least protect those people with ovaries from some of the potential things that could result from said rape. That one of the things they are protecting people with ovaries from is the possibility of bearing a child and being a good and loving parent–which happens even when a child is conceived by an act of rape–doesn’t occur to them. They know best, and they can’t imagine this person they’re placing in an institutional care facility being a good parent.

Cross-posted from my tumblr blog, Rabbit Lord of the Undead.

  1. Sphere, pshyeah.
  2. MY SARCASTIC VOICE LET ME SHOW IT YOU.

“Defiant Birth”: Impolite Women Who Didn’t Make History

[WARNING for this post: ableism within and without the medical system, pregnancy/baby losses mentioned]

defiantbirthDefiant Birth: Women Who Resist Medical Eugenics, by Melinda Tankard Reist, is a book about women. It is a book about families. It is a book about resistance. It is a book about women who refuse to be told what they “should” do with their own bodies by healthcare staff, friends, and family.

It is a book of stories, of women’s voices.

All of the women in the book have chosen to continue pregnancies against medical advice. The medical advice is based on something about the pregnancy falling outside of the very narrow “norm” – the women’s disabilities, their “elderly” ages, a diagnosis (or misdiagnosis) of a fetus labelled “defective”. There is a woman with diabetes in her forties; a woman who chose to carry to term and birth two babies with anencephaly; women with babies with trisomy 21; women living with HIV; women with incorrect prenatal diagnoses of lethal conditions; a woman with lupus and a woman with MCTD and pulmonary hypertension; a woman with Scheurmann’s disease of the spine; a woman with severe asthma; a woman with cerebral palsy; a woman and man both with dwarfism; a woman exposed to rubella during her pregnancy; a woman with thalidomide-related phocomelia; and more.

I’ll start by letting some of these women tell their own stories, as this is the significance of the book as I see it:

d. a. marullo writes:

The next day I went to see my regular doctor whom I hadn’t seen yet. He was my general practitioner and I’d known him for eighteen years. I told him the news and he tightened up his face and looked at his paperwork while speaking.

“Well, you’re going to terminate, right? I mean it would be the smart thing to do!” I was so devastated by his words I almost started crying.

“I haven’t really decided anything,” I said. […]

“Well, the numbers add up, after all – your age and all. It’s probably not going to be normal!”

Teresa Streckfuss writes:

“He came bursting into our room and listened for Benedict’s heartbeat and said, “Okay, that’s all fine,” before awkwardly leaving us again. Lucky he left. If he hadn’t I might have screamed, “THAT’S ALL FINE? THAT’S ALL FINE? GET OUT OF MY ROOM! MY BABY HAS JUST DIED! IT’S NOT ALL FINE! WHAT DO YOU MEAN, THAT’S ALL FINE?” I know what he meant. Our ‘non-viable fetus’ had died, as expected. He failed to recognise that we had just lost a person, someone we loved.

Johanne Greally writes:

On returning home I went to see my doctor. I was totally unprepared for his reaction. “There will be no problem getting you an abortion,” he said. “You meet all the requirements on both physical and mental grounds.” “But,” I stammered, “I don’t want an abortion. I want a baby.” I felt shocked, belittled, and disempowered by him.

“Your back is unable to support just you, let alone a baby. You will never be able to carry a baby. You will be in a wheelchair by the time you are seven months.” It was true that my back couldn’t support me at that time, and I had been trussed up in a corset-type back brace off and on for over a year, so that I could not move around freely even without a baby.[…] All through the pregnancy my back continued to improve. I was now able to lift and bend, even chop wood by the time I was at the seven-month mark.

Heather Arnold writes:

The added pressure of a baby pressing on my lungs would cause more problems. This doctor also reinforced that the ‘standard of care’ in my condition would be to abort the baby. I told her immediately that abortion was not an option and that I would be carrying this baby as long as I possibly could. She encouraged me to go home and talk with my husband before making the decision, although my mind was already made up.

Leisa Whitaker writes:

I remember sitting in his rooms listening as he explained that there was a 25 percent chance that our child could still inherit the dominant achondroplasia gene and the dominant pseudoachondroplasia gene- a combination that they had never seen before anywhere in the world. They had no idea of what effect this would have on the baby – whether it would die soon after birth or if it would have lasting physical problems. They had absolutely nothing to go on. Having told us this, the specialist offered us an abortion. He asked us to think about whether we wanted to bring another dwarf baby into the world.

Rosaleen Moriarty-Simmonds writes:

We learnt this one day when my mum went to pick Deborah up from school, only to find her in floods of tears. The children in her class had been asked to tell a story about someone that they admired. She talked about her elder sister, who didn’t have any arms or legs, and Deborah was told off by the teacher for having “a horrible imagination!”

Jo Litwinowicz writes:

I heard mum calling dad to the phone and she asked me to repeat what I had said so I told them that I was expecting. Their reaction devastated me. “Well Jo, that news has turned this day into a tragic day. You are an irresponsible and stupid girl.” They might as well have kicked me in the stomach; I was so upset that I slammed the phone down. If my parents’ reaction was bad, what chance did we have with complete strangers?

When I went to see my doctor at his antenatal clinic his first words were, “God, you were the last person I thought I’d see here.” “Sorry to disappoint you,” I replied. He asked how we felt about the prospect of becoming parents, and we told him that deep down we had both secretly pined for a child and it was the greatest news ever. His response was to say that throughout my pregnancy, if I ever wanted an abortion, he could arrange it. […]

The next day there was a knock at the door and this woman said she was from Family Planning and could she come in for a chat. I joked, “You’re a bit too late.” She went on, saying how hard it was going to be to raise a child in my condition. I said, ‘What condition? You don’t know me and what I’m capable of. […] She calmly went on, “You do realise that when your child can walk and talk it will come to you and say, ‘I hate you, mother, because you can’t talk properly, you dribble and you’re in a wheelchair and I want a new mother.'”

Note that the stories are much longer and fuller than the bits I have picked out, which concentrate on ableist attitudes. There are many parts focusing on the authors’ happiness also!

One of the most powerful tools in our toolkit as PWD is to read the world in ways that others do not; to take tools for one purpose, and to use them for our own; to resist the appropriation of our stories for the political purposes of others. To this end I am also making a conscious choice to not review the introduction or closing words of the book here.

There are many stories in this book, and it is a book with multiple possible readings. I have deliberately avoided reading any other reviews while writing mine. I imagine that some may choose to read it as an anti-choice screed, just as some forced-birthers choose to see posts on FWD about the effects of ableism on pro-choice discourse as “on their side”. I choose not to read it that way. Only two or three times while reading did I get an sense of the voices possibly self-identifying as politically “pro-life”, and those moments were brief. One, who used the words “I chose life”, may or may not have been playing into the political nature of the phrase; either way, she is more than entitled to use the phrase in regard to her own personal choice. The other mentions in passing that she had worked at a “crisis pregnancy centre”, gave me a bit of a chill. But these are not the majorities of the stories, nor were they the most important or prominent parts of the stories in which they appeared.

The women who speak about their religion influencing their decisions, the women who touch on much-misused catchphrases like “I chose life”; these particular sentences did not resonate with me. However, not everything in this book needs to resonate with you for the stories to have power, for the experiences to speak. It was particularly noticeable that in some cases the medical staff just assumed that the choices to continue a pregnancy must be based in obedience to external religious edicts. The stories most of the women tell are quite different; their decisions were individual and deeply nuanced, not based in unquestioning submission to some sort of “authority”. Sometimes their religious beliefs were involved, and sometimes not; in no story did I read the story-teller proclaiming that other women’s choices should be legally constrained or outlawed. They are telling their own stories. I trust readers at this blog to handle the nuance, even as I might not trust those who bring their own agendas to the work.

Another issue I have with the book is the occasional mention of the experience of parenting a child with a disability as transformative for the parent. While this is not necessarily untrue, I think it needs to be written very carefully so as not to dehumanise or objectify the child, turn the child into an “inspiration” instead of a full, rounded person. I’m not sure whether that line was quite crossed – I’d have to re-read in detail, and the book has to go back to the library today! – but it skated close here and there.

If you’re looking for a statistical representation of how often prenatal diagnosis is wrong or misrepresented or used to pressure women, this is not the book for you. This books isn’t statistics; it’s lived experience. The stories have been chosen because they represent those times that women are pushed around or lied to or subject to misdiagnoses and poor medical care. The issue in the book is not whether this is a majority or minority experience, but that it happens at all, and that it can be handled very, very badly. Given the number of readers and writers on this site who’ve been stampeded in the healthcare system, I think many of us do have a sense of what it’s like to be on the receiving end of that treatment. In these stories, the stakes are high: the result of the stampeding, unresisted, would have been, in each case, a wanted pregnancy lost.

But I am overemphasising my nitpicking and reservations, here. In short, I recommend this book highly. The stories of disabled women, in particular, I found absolutely riveting. Their stories are vivid, immediate, at times horrifying, but more often joyful. The joy can be transcendent, yet entirely ordinary: the joy of a wanted baby, the magnificence of a disobedient woman.

I would love to see a followup book, in a similar format, with a broader scope. I’d like to see a book including stories from parents in non-Western countries; from trans or nonbinary parents; from very young parents; from undocumented immigrants and refugees and Indigenous people. A book including more analysis of the intersections of class and nationality and gender and race and queerness with disability could only be stronger. Whether we’re likely to hear that book from Reist is, well, a matter for debate; but she doesn’t, nor should she, have a monopoly on this type of story. As it stands, I am left thinking that it is only the privilege that the women in this book have – mostly white, mostly relatively wealthy – that allowed them to resist as they did, to survive as they did. The stories in this book are particular types of stories, and do not represent the realities of all pregnancies labelled “abnormal” for one reason or another.

However, even in its current form, I think this book should be considered a basic primer – for healthcare professionals, for pregnant people, for anyone else interested in disability and rebellion. It is not a primer about chromosome diagrams or placental configurations or how to eat or what to expect; but a primer about lived experience. The book covers what medical textbooks and pregnancy self-help books do not: the intimate, touching stories of women who rebel against crushing ableism.

Above all, Defiant Birth, to me, is defiantly pro-choice. It’s a book about reproductive justice. This book deserves its place in the stable of pro-choice works dedicated to the equally valid and necessary choice to not have a baby.

Trust Me

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A couple of weeks ago I asked my PCM for a referral to OB/GYN to replace the IUD that I had to surrender over the summer. She and The Guy and I have been talking for some time about the options and realities of having another child with my condition, and the answer we came up with is that we will wait for a little longer and see if I am still doing well with my current regimen.

Usually these things take weeks to schedule, but they called the next day, and I had my referral appointment on the second day. No matter what your history in the OB/GYN clinics you have to have counseling in order to get birth control through the MTF (all the ones in which I have been treated anyway), and the idea is that you get to talk to your OB/GYN about all of your birth control options, what you want from your birth control, take his or her advice, and decide on what is best for you. That is the theory, anyhow.

Some people (like me) have an idea ahead of time what they want or what is best for them. I, for example, due to my medical history and ongoing condition, am not able to use a hormonal birth control. Because of that I know that the copper IUD (ParaGuard) is the best option for me. Also because of this, I often read up on ParaGuard and IUD use in women, and try to keep abreast of any information regarding IUD usage, risks involved, etc. The IUD has such a bad reputation from so much misinformation that I feel the need to stay on top of this. Some would say this makes me a big smarty-pants-know-it-all. I say that sometimes a woman can’t trust that her doctor is going to take her word at face falue, and in the off chance that her doctor isn’t as awesome as mine she needs to be prepared. I am privileged to have information available at my fingertips.

I did not realize that my appointment would not be with my usual kick-ass OB/GYN, Dr. K, the same one who saved my fallopian tubes and life this summer and who promised to give me a shiny new IUD whenever I was ready for it. Not panicking when I saw the face of a woman I didn’t know I sat down as she introduced herself as Nurse Midwife V and told me that she had been looking over my file. Great. Maybe she was doing her background reading too, because I really tire of bringing every doctor up to speed constantly on my condition when it is right there on the computer screen for them to see. I don’t have a bunch of degrees and I can keep up with the required reading.

Before I had even the chance to say anything she told me that I was “not a candidate for an IUD” because of my ectopic pregnancy, and that she was not going to refer me for one. When I started to say that I understood that there were some risks she cut me off and told me that my pap was also past due and kept talking. I tried to assert myself past her obsession with people rooting around in my vagina, to let her know that I was aware that there were risks involved with the IUD, but that I knew that not only was what happened to me rare, but that I knew it was rare that it might happen again. But she wasn’t having any of that. She kept right on talking like I wasn’t even there.

I told her that my regular doctor had already said I was fine to have one. She responded by saying that it usually took weeks to get in to see him, as if this was supposed to deter me somehow. I also tried asking if the new ACOG regulations had been implemented yet, thinking this might distract her and get me closer to my goal (also, I am in the lag area none of them know what to do with, being 29, soon to be 30) and all she would say was that my pap was past due. Is it? I don’t know. I had a normal one in late 2008. I am in a mutually monogamous relationship…

When I left I told the front desk that I would no longer allow Nurse Midwife V to treat me. I am currently in the process of filing a formal complaint against her. What shouldn’t have happened here was having everyone from the desk staff to the NCOIC (that’s Non-commissioned officer in charge) tell me how nice Nurse Midwife V is and how everyone likes her so much, and that she is well known for being very good at what she does. That might well be true, great. My experience is that she was condescending and rude, and didn’t help me with my medical needs to my satisfaction. I think that people forget that sometimes, that doctors and nurses are also here to provide a service for us. I have a medical need, and she didn’t meet it. I shouldn’t have to settle for that. No matter how nice and great she is to work with. I also shouldn’t have my experience erased and dismissed by everyone in place to help me when things go wrong for me. That is not good patient advocacy.

I am rather privileged, however, in that I was able to make another appointment, and I saw Dr. K the next day. Had I been someone who had to drive a long way to a clinic, I might not have been able to. Had I had to pay out of pocket for this visit, or if my insurance limited the amount of OB/GYN visits or birth control counselings I was allowed per year, I would not have been able to. Had the travel cost me money I did not have, this would not have been possible. Had I not had the type of job I do where I set my own hours, I might have had to miss work. These are the kinds of things that women face when they come up against providers like Nurse Midwife V, providers who don’t want to listen to women, who won’t talk to women about their own bodies and medical histories. Providers who don’t trust women to be actively involved in their medical processes. Providers who can’t be bothered to involved women in the partnership that should be their own medical care, especially when it comes to their reproductive health. As it was, having to go back a second time was already taxing on my spoons, and stressful, because now I have be on my game. Suddenly I have to come in educated on something that my provider should have known the first time.

Thanks to meloukhia’s indominatable Google-fu I took in the information I was looking for, backing up what I had already said, that an ectopic pregnancy did not preclude me from having an IUD (or, that a previous ectopic pregnancy was not a contraindication for an IUD). Dr. K was impressed that I was so prepared. He told me that he had heard that information, but he himself had been so busy that he hadn’t had time to read any of the journals for himself. He told The Guy (who went with me this time, because they like to banter back and forth in Korean) that I should come in from time to time to keep him updated on current women’s health, and said he wished more people came to him so informed. He said that whomever told me that I couldn’t have an IUD was wrong. I was prepared, but I shouldn’t have had to come in as if I was fighting a war.

Two weeks later I have my IUD.

Nurse Midwife V didn’t care to ask why, after having one IUD failure (as rare as they are, b/c they are pretty much the most effective form of reversible birth control out there, with a fail rate of less than one percent), I would want another IUD. She didn’t bother to find out anything else in my medical history that might affect my decision to make that very personal choice about birth control, like that I am on medication that might have contraindications with hormonal birth control, or that previous specialists had determined that hormonal birth control is a migraine trigger for me. She simply asserted her own opinion (as wrong as it turned out to be) and called it a day. But all of that information is in my medical record if she cared to look. The same record she said she reviewed when she made her initial judgment.

And now, I can’t trust her.

Originally posted at random babble…

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