Category Archives: reproductive justice
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.
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.
I now return you to your regularly scheduled reading.
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.
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.
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.
see more Lolcats and funny pictures
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…