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Disturbing Changes To Our Bodies, Ourselves

I first read Our Bodies, Ourselves when visiting my brother and sister in law. My sister in law, who is pro choice, had it on her bookshelf. I found it to be a very comprehensive and informative resource on women’s health, despite not agreeing with its stance on abortion. I was thrilled, however, when I noticed discussion of the prenatal testing/disability rights issue, as well as disability and sexuality. Noticing my enjoyment of the book, my sister in law gave me the updated edition as a Christmas present.                                                                                              

Imagine my disappointment when I cracked the cover of the book and looked for those sections, only to find they had been removed. Issues related to race, religion, gender and sexual orientation remained, but discussions about disability had been relegated to a sidebar instructing anyone who wanted information on disability and prenatal testing to visit the OBO website. The section on disability and sexuality had been completely removed, without any mention of where that information could be found. As a woman with a disability, I felt ostracized. Here was a well-respected resource for women singling out disability as something so insignificant/controversial/whatever as to be segregated on the group’s website.  The book, to put it candidly, was subtly telling women with disabilities that we had no role in the discourse surrounding reproductive rights. I did bring this up on an OBO blog post in 2010 and was answered by an administrator:

“I’ve been part of the editorial team for the past several editions of OBOS, including the one currently in production, due out in October 2011. We faced a lot of space constraints in 2005, as that edition was quite a bit smaller than the 1998 edition, and some of the content you mention was cut. But our recent single topic book, Our Bodies, Ourselves: Pregnancy and Birth (2008) has an entire chapter on prenatal testing that addresses the complicated issues raised by testing and underlying assumptions about disability.”

I appreciate that OBO legitimized my concern with a response, which shows that they took it at least somewhat seriously. I’m glad that their book on planned childbirth includes a section on prenatal testing and disability. However, I continue to feel frustrated. Facing “space constraints” is not an excuse for segregating disability to the group’s website. The omission of the previously cited material from the 2006 edition, and the explanation that this omission was due to space constraints, indicates that the editorial board considered disability to be of lesser importance than issues impacting other minority groups. The omission sends the message that prenatal testing and disability is only worth knowing about if one is a nondisabled woman planning a family. The implication is that women in general don’t need or want this information, let alone let alone that pertaining to disability and sexuality.                                                                                 

I don’t know what happened between 1998 (the first edition I read) and 2006 (the newer edition) to make the editors decide that disability issues no longer merited use of the space provided for their book.  Was there someone on the 1998 committee with an interest in disability issues who was no longer on the committee when the 2006 version was compiled? Where people who experienced a termination for fetal disability offended that the book urged parents considering this decision to carefully consider their preconceptions regarding “quality of life,” and the editors felt their feelings trumped the concerns of disability advocates? The response I received indicates that the editorial board decided that something had to go and it might as well be disability issues. If so, did they appreciate how this decision contributed to the oppressive cultural zeitgeist that ignores the sexuality of people with disabilities, uses us as pawns in the abortion debate, and thrusts us outside the scope of human diversity? If not, why not? Why, in the very least, didn’t someone think that those with disabilities would complain about these changes? Did they just think we’re too powerless to say/do anything about them? Did the editors actually buy into the eugenic idea that people with disabilities shouldn’t/don’t have sex and hence didn’t deserve a place at the table when discussing issues related to sexuality and reproduction? I don’t know, but I feel these are all possibilities.                                                                                                                                       

My next statement will be somewhat controversial: I think that whoever was in charge of the 2006 OBO book felt that the book was automatically disability friendly because it extols a politically liberal worldview. This is, of course, crap. While most disability advocates believe in things strongly supported by the Democratic party (social security, Medicaid/care, a full range of family planning choices, LGBT rights, healthcare reform) we do have positions that deviate from mainstream liberalism, including critiques of selective abortion, efforts to eliminate institutions in favor of small group housing, and strong opposition to assisted suicide/euthanasia. We also support the social model of disability, something that people on both sides of the political aisle have struggled to accept or have resisted completely. People on the right shouldn’t expect our automatic support because they oppose selective abortion, and people on the left shouldn’t expect our automatic support simply because they support Medicaid/care. This is the result of both sides seeing us as “the least of these” who they, of course, want to support. If there is  no understanding of what that support entails, the so-called support becomes a very cynical form of tokenism. I hope that the 2011 edition reflects a reconsideration of whatever lead the editors to exclude disability issues in 2006.

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About That All-Male Birth Control Panel….

I love my country, the United States. And that’s why I am so embarassed about the current cavalcade of birth control follies now overtaking our public life.

We have so many material resources, why can’t we share them to help all who need help covering the full range of family planning choices, without all this uproar? Poor Americans, immigrants, people of color, women, people with disabilities…why why why are these the groups that always get lost in the shuffle?

Exhibit A of said cavalcade: The all male panel that was convened before Congress to explain why the recent Department of Health and Human Services ruling on family planning coverage intrudes upon religious freedom.

When pressed, apparently, some of the panel members conceded that maybe contraception was OK in cases of “medical necessity.”

In an animated conversation with people I know, I submitted that this concession might stem from a belief that women with disabilities/health impairments have no business reproducing. Someone said that I was prejudicial, leaping to conclusions.

So I read through each of the panelists’ testimonies. If anyone can provide substantive evidence that any of these men have good disability and/or women’s rights records, then pleasantly surprise me, would you please?

Reading the testimonies just made me even more skeptical that any of them get the reproductive rights of women with disabilities–let alone *all* women’s family planning rights. Below are my notes on each testimony. If you want to read the testimonies yourself, please go here.

William Lori, US Conference of Catholic Bishops: Compares the proposed contraceptive coverage regulations to the government forcing Orthodox Jewish delis to serve pork, when that pork eaters can easily, cheaply, and freely get their chosen meat elsewhere.

This analogy does not hold (and it offends me as someone whose vision of reverence for life encompasses being a vegetarian, and an anti-anti-Semite). Pork is death-dealing, first of all to pigs, and second of all to humans who develop serious health problems from eating it. Access to free/affordable voluntary contraception, on the other hand, is often life- and health-giving for women, especially women with disabilities.

The analogy also suggests that contraception is somehow an optional luxury, one already easily, freely, cheaply available through many other venues. Yet the reality is that family planning access is far from a given for millions of US women, including and especially women with disabilities.

Women with disabilities are far more likely than nondisabled to live in poverty, rely on government benefit programs, be unemployed or underemployed, and thus to have constricted access, if any, to health care of all kinds, including voluntary family planning services and supplies. Any HHS ruling that expands voluntary family planning access, whether through government programs, private health plans, or some combination of the two, thus promotes the interests and needs of women with disabilities. Does Lori know this?


Matthew C. Harrison, President, Lutheran Church-Missouri Synod: “We object to the use of drugs and procedures used to take the lives of unborn children. We oppose this mandate since it requires religious organizations to pay for and otherwise facilitate the use of such drugs by their employees.”

As All Our Lives asserts every day, just about, according to the best, most current scientific evidence, IUDs and hormonal birth control methods such as the pill and Plan B emergency contraception work *before* conception and not at any point after. Thus the contraceptive coverage ruling is in fact solely about pregnancy *prevention*, by *anyone’s* definition of when life or pregnancy begins.

If Harrison believes this misinformation about such a critical health issue impacting so many women, with or without disabilities: then why should I be optimistic that he is amply informed about, let alone eager to promote and defend the family planning concerns of women with disabilities, a frequently overlooked and neglected minority population?


C. Ben Mitchell, Union University: “I am here to decry the contraception, abortifacient, and sterilization mandate issued by the Department of Health and Human Services on January 20, 2012…” , See my objections to Harrison’s testimony.


Meir Soloveichick, Yeshiva University: “The administration denies people of faith the ability to define their religious activity.” This definition of “people of faith” does not include or side with disabled women who make prayerful, conscientious, lifegiving, and lifesaving decisions about which family planning method(s) to use and when and whether to pursue conception.


Craig Mitchell, Southwestern Baptist Theological Seminary: “This rule…takes away the freedom of the citizens while emboldening the federal government to do whatever it wants.”

Whoa….Just about every discriminated-against group in the US has heard such an argument leveled against its own struggle for justice.

Mitchell’s definition here of “citizens” who are deprived of freedom sides with powerful religious institutions whose policy on birth control, especially when intruded into the public sphere, infringes upon the freedoms of many women with disabilities (not to mention women in general, but let’s stay focused on this doubly discriminated against minority for the time being.)

In effect it forces a “choice” between lifelong celibacy and a single method of family planning, natural family planning that may be right for some women. But for many women with disabilities, NFP is quite ineffective and illfitting, even as pregnancy may be quite risky for them, and they wish *themselves* to conceive sparingly, or not at all.

Mitchell’s notion here of “citizens” deprived of their freedom in regard to family planning does not appear to recognize women with disabilities and their children’s and their own rights to health and life.


I treasure religious freedom, especially as someone affiliated with a distinctly minority, other than Christian faith. Some of my ancestors were forcibly deprived of their religious freedom. Never again! But these testimonies…so awry…so unaware, it seems, of who they are excluding, and why, and how. In the name of prolife, even though their unwillingness to meet the administration halfway could end up costing lives, unborn, already born.

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Prolife Before, During, & Ever After Birth displayed a poster with a photo of an unborn child and a series of questions that All Our Lives has heard many times before.

"Will You Still Be 'Pro-Life' AFTER SHE'S BORN? Will you apply the same vigor to your work: against war, against hunger, against poverty, against homelessness, against our planet's degradation, against capital punishment, for human rights, for opportunities for education and jobs, that you do to your efforts to make abortion illegal? If not, please stop calling yourself 'pro-life.'"

So often these questions are accusingly rhetorical, with the expected answer-if the recipient has not been utterly shamed into speechlessness-of "Hell, no."

But that is not at all what All Our Lives has to say.

Our response?

Yes of course.Yes of course. Yes of course. Yes of course. Yes of course. Yes of course. Yes of course. Yes of course.Yes of course.

And by the way, it's all about making sure as few women and babies as humanly possible ever end up in situations where there appears to be no other choice.

Of course "pro-life" cannot mean anything less than this!

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Disability and the Concept of Dignity

Those of us with disabilities have had experiences that may seem truly horrible to those without disabilities. Some of us are wheelchair users. Some of us grew up in special education. Some of us have had multiple surgeries or use a respirator. All of these experiences fall into the category of things society considers to be “undignified.” My involvement in Disability Studies circles has shown me that a unique, disability-rights centered, progressive ethic regarding imairment and disability exists.  For instance, during a presentation on scars and disability at the 2011 Disability Studies Conference, a presenter mused, "I'm an agnostic…but, if there is an afterlife, I can't imagine that Osama Bin Laden or Jack Kevorkian are enjoying it too much." 

Recently, Tim Shriver of the Special Olympics wrote a blog post entitled “Raise Your Voice for Dignity!” concerning the recent travesty experienced by Amelia Rivera and her parents at the Children’s Hospital of Philadelphia. During a consultation at CHOP, Amelia’s mother was told that the hospital would not perform a kidney transplant because the three-year-old is mentally disabled by Wolf-Hirschhorn Syndrome. The same week brought another travesty concerning the plight of an unnamed woman with schizophrenia who was almost forced to undergo an abortion and sterilization (see these posts from the Boston Herald and Jezebel). These stories epitomize what it means to experience true indignity. (Psychological recovery from the knowledge of such inquity also merits about a gallon of Brain Bleach).

When I was growing up with a disability, it really didn’t feel like a “big deal” in and of itself-what made it problematic was other people’s attitudes. To put it another way, my disability entails deficits in spatial awareness and coordination. It is difficult to describe just how seriously this impacts my daily life, but it means that I get lost very easily. I trip, bump into things, etc and have always done so. Again, this is and was a nuisance, but I have always had a good sense of humor and self-respect, so I would let it go. I didn't know I was "disabled" and "different" until someone told me. Frustration, or even significant challenges, are not the same as “indignity.” I’ll never forget one teacher who blamed me for being bullied and tried to make me stay in at recess so this wouldn’t happen. When I went out to recess anyway and was bullied, she wrote home to my mother to tell her that it was my fault-for going outside during recess. THAT was indignity. I could provide copious examples of people in authority doing similar things while I was growing up. I watched as peers with disabilities experiencd the same tactics. Maybe the teachers and other adults who did this thought they were doing the right thing, but what they did was punish bullying victims instead of the bullies. Moreover, by doing this the bullies got what they wanted-the elimination of their targets. They were not forced to change-in fact, they were taught that their behavior is justified because there was something obviously wrong with their victims, who had been removed from activities that they, the tormentors, continuied to enjoy.

So it is when the adult world suggests abortion and euthanasia as a solution to human disability. This practice has the same effect as taking bullied students off the playground at recess. Instead of addressing social inequality and allowing disenfranchized people to experience the simple things we all enjoy, people who will find themselves in this category are removed from the playground of life, so to speak. In doing so, the original goals and perspectives of the eugenics movement are preserved.

Because of such experiences, people with disabilities often embrace a different concept of dignity than mainstream individuals. It seems to me that of late, the concept of dignity has been conflated with “propriety,” and “orderliness.” Conversely, indignity has been equated with “yucky” and “embarrassing.” These conceptions are wedded to current conceptions of autonomy, which is often defined by the ability to execute daily tasks without assistance (what disability advocates would refer to as accommodations) or any kind. In contrast, a disability rights centered concept of dignity centers primarily on the facilitation of autonomy and interpersonal respect. Accessable buildings, education and mediical care promote automomy, whereas inaccessibility creates indignity. A disability-conscious concept of dignity acknowledges that indignity is caused by social constraints upon the tools needed to facilitate personal decision-making. Dignity does not mean looking past someone’s disability, but accepting it as an integral part of who that person is and respecting that individual’s right to equality.

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Our Pro Contraception Article in New Consistent Life Ethic Journal

Thanks to Aimee Bedoy, editor of the new consistent life ethic journal Life Matters. She published our article "Family Planning Freedom Is Prolife" in the inaugural issue.

All Our Lives has encountered active censorship not simply when we have sought cooperative action on birth control with prochoice groups, but when we have tried to civilly raise this issue within the organized prolife movement as such.

Never mind (as the article points out) that most who identify as prolife on abortion support contraceptive rights. We welcome this opportunity to get matters out in the open.

Please read, support, and send your own work to this welcome new journal.

Blog Posts, Past Actions

Blogging Against Disablism 2011: Adoption, Special Needs, & Choice–By Meghan

(Our second of two posts for this year's Blogging Against Disablism. Thanks to All Our Lives supporter Meghan for sharing her life story.)

Blogging Against Disablism Day, May 1st 2011 In 1982, my biological mother found herself in a terrible position. Not only was she pregnant, but she was taking LSD, her mother was an alcoholic, and she was being abused by her mother's boyfriend. She had had an abortion three years before I was conceived. I'm not sure why she decided to carry me to term, but she did.

My Mom and Dad were also in a painful position. After giving birth to my brother, my Mom unknowingly used a defective IUD device that was later found to have injured thousands of women, including her. After undergoing several dangerous and unsuccessful corrective surgeries, she and my Dad decided to adopt.

I have no way to get my biological mother’s perspective on the adoption, information which would provide more insight into how the adoption process impacts the women who choose it. Because she has never tried to make contact with me, I’ve assumed that she would prefer to put the adoption in her past and haven’t attempted to contact her. I do know that the particular agency she chose was an ethical** one and hope she went on to have a joyful, fulfilling life.

I also had the pleasure of meeting my biological father and that side of our family after they made contact a few years ago. They are well and were very happy to meet me. In doing so I learned that I’m Cuban on their side. Although this revelation has had little impact on my life, it’s fun to have that information.

Both situations surrounding the choice of adoption were painful and sad. I certainly agree that it would have been wonderful if my Mom, my biological mother and our relatives hadn’t had to experience the heartbreak that they did. Nevertheless, I am grateful for the adoption that resulted from those experiences, for it was largely responsible for the success I enjoy today.

After I was born, I developed respiratory distress and had to be airlifted to another hospital, where I was placed on a respirator. Because of this I incurred a hefty medical bill. If the state of Kentucky had been unwilling to absorb those costs, it would have been too expensive for most people to adopt me and I would have ended up in foster care. Luckily, the adoption agency convinced the state that doing so was less expensive than taking care of me for eighteen years.

Over the coming years, my adoption afforded me with dedicated parents and stability, something that was particularly important to me as a person with nonverbal learning disorder. Nonverbal Learning Disorder is similar to Asberger Syndrome. NVLD makes it difficult to interpret social cues, which can lead to unintentional breaches of etiquette. It also increases one’s tendency to loose things and become lost, which enhances the difficulty of changing one’s routine. Because of the adoption, I did not have to struggle with the pain and disruption of being moved from place to place.

I also had parents who wanted me very much and who fought valiantly for my rights. As we navigated the educational system, my mother came to every meeting, every doctor’s appointment, and every vocal recital. My Dad and I took long nature walks and gardened together. Because of this love and advocacy, I was able to make the most of my intellectual, spiritual, and emotional gifts. I tend to believe that my parents sunk all the energy they would have used on having multiple children into me and my brother.

This care and attention helped me cope with the persistent bullying I experienced growing up. Whenever I came home from a long day of being told that I was hated, retarded, cursed, or what-have-you, my parents were there to tell me that I was gifted, beautiful, and unconditionally loved. I wouldn’t be the same person if it weren’t for their ability to counteract the vitriol I experienced.

If my biological mother or father had chosen to care for me, I believe that they would have found a way to do it well. If I had been placed in foster care, I’m sure that caring people would have helped me. Adoption, however, was an excellent choice because it enabled me to have everything I needed to grow up and achieve my goals.

Now that I am in graduate school, I volunteer as an educational surrogate parent, which involves making educational decisions on behalf of disabled students in foster care. There are many people in the system who dedicate their time to helping these students achieve their goals and rise above the difficulties they experienced. This makes me believe that they will be all right. Nevertheless, consistent advocacy and familial connection is a much more dependable option.

Every time I go to a meeting, I am grateful to my biological mother for choosing adoption and giving me the gift of parents who were able to be consistent educational advocates. If you are unable to have children and have a heart to help others, consider adopting a child with special needs who needs consistency and the unconditional love of a parent. Children with special needs can be adopted via foster care, international agencies and domestic adoption agencies.

Moreover, if you’re a prospective parent considering adoption for your child, don’t think that a child with special needs cannot be successfully placed. In fact, there are currently waiting lists of people wanting to adopt children with various special needs and disability rights advocacy have lead to more rights and opportunities than ever before.

Canada's Waiting Kids
Be My Parent [Britain]
Adopting a Special-Needs Child [how-to article for Americans]
AdoptUSKids [USA]
National Indian Child Welfare Association [for members of USA's First Nations]
National One Church One Child [helping to place African American kids]


**In an infant adoption, an ethical adoption agency will not pressure women or their partners into an adoption decision and will treat them as complete individuals with legal, financial and emotional needs. They will help navigate adoption options, including open, semi-open, and closed adoption and will be honest about all aspects of the process.

Blog Posts, Past Actions

Blogging Against Disablism 2011: Reproductive Violence and Injustice Against Disabled Adults–By Marysia

(Our first of two posts for Blogging Against Disablism 2011.)

Blogging Against Disablism Day, May 1st 2011 More often than not, issues of reproduction and disability are approached solely in terms of ablebodied parents and disabled children. Of course issues like prenatal diagnosis and abortion of disabled unborn children are critical parts of the story.

But not all people with disabilities are children, whether unborn or already-born. Some of us are in fact adults, even if we are overlooked or infantilized. Like other humans, we are sexual and reproductive beings. And we face many forms of reproductive violence and injustice ourselves.


  • Poverty, un or underemployment, poor housing conditions, poor nutrition, poor access to medical care, transportation barriers, and other problems that often severely undercut our ability to exercise our own sexual and reproductive preferences, whatever those may be.
  • Stereotypes that we are either asexual, or grotesque sexual predators.
  • Stereotypes that reproduction is a nonsequitur for us, or that we are by definition “unfit” parents whose “monstrous” breeding must be forcibly stopped.
  • Heightened vulnerability to sexual assault and other abuse.
  • Sex education that omits or glosses over us.
  • Interference with our freedom to seek out and marry the partners of our own choosing.
  • A long history of outright forced sterilizations and other pressures to use family planning methods we do not want, at the same time we are denied access to contraceptives we do want and that best fit our particular needs.
  • Interference with our freedom to seek out fully supported parenthood, whether biological, adoptive, or foster.
  • Intense pressure to abort when we become pregnant or partner to a pregnancy.


These injustices intersect mightily with the injustices resulting, for example, in the abortion or infanticide of children with disabilities. When I was pregnant with my daughter, for instance, a physician pressured me to have an abortion because he feared she might be “defective.” “You mean, just like me?!” I responded angrily. Hell if I was going to let him have his way with us!

Despite all the difficulties of that decidedly unplanned pregnancy- poverty, my ill health, disrupted life plans for me and my boyfriend, among other problems-I did have some resources for resistance, including the confidence that I could be a good mother. But what about other women who have disabilities and/or carry potentially disabled children-what if they lack the necessary resources? I already know the answer to that question. It is saddening beyond measure.

Even when and where it starts in the womb, the prevention and healing of reproductive violence and injustice against people with disabilities must continue ever after birth. And, as the disability rights slogan says, "Nothing About Us, Without Us." All of us.

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More on Bodily Integrity

Unlike Jen, I did not attend the Open Hearts, Open Minds conference. But I did carefully look over the program materials beforehand, and was struck by how few people of color were involved in it. I was struck that while abortion of disabled fetuses was on the discussion agenda, there seemed to be little involvement of people with disabilities and disability rights advocates.

I am a person with disabilities, and though I am of European descent myself, am the very involved grandmother of a child of color. People with disabilities and people of color have in so many ways, including but not limited to abortion, been denied the rights to life and bodily integrity. So I am troubled by these apparent omissions of vital stakeholders from this conference. 

There is a disability rights movement slogan that occurs to me at this point: "Nothing about us, without us." Hopefully any future dialogue efforts will consider this at the planning stages, not after the fact.

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Why I Almost Signed This “Unnecessary Opposition of Rights” Statement But Unfortunately Didn’t

I am a multiply disabled person who strongly advocates the sexual, reproductive, life, and all other human rights of people with disabilities. And I am a feminist who loves the "f" word that so many "but" away. So I welcome almost everything in this statement against the opposition of women's reproductive rights and the rights of disabled people.


I would really like to sign it, but I cannot, because it implies yet another unnecessary opposition of rights: between the rights of those who are already born and those who are unborn. So, where and how do I show my solidarity? Do the disability rights and feminist movements have room for people like me who want to fully bridge that often created divide between prenatal and postnatal lives?


Now, I am in those movements regardless of who does or does not want me in on them. I am going to keep doing the work, no matter what, just as I have for years. But any sign that people like me are at least sister (or fellow) travellers would be good.