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27
May 2013

Lack of Oversight Contributed to Gosnell’s Crimes

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Please note: In addressing the issue of late term abortion, I specifically address terminations done in response to fetal anomalies which are not fatal and distinguish them from terminations for those that are. This is not because I feel that aborting in the third trimester for a fatal condition is “ok,” but because a common pro-choice argument for such procedures is that they are *only* done in response to fetal anomalies which are “incompatible with life,” such as anencephaly. Part of my aim in discussing such abortion is to address the conflation of “fatal” with “disabled” in mainstream pro-choice rhetoric, and to argue that there is little moral difference between what Gosnell did to the babies in his clinic and what is done to the disabled fetuses in these procedures.

I recently read an editorial by Reverend Harry Knox arguing that inaccessible abortion lead Gosnell’s victims to his doorstep. Now, I can understand the reasoning in his argument: Prior to the legalization of abortion, women did die during unsafe abortions, which were carried out in conditions similar to Gosnell’s. Moreover, I’m sure that All Our Lives and Reverend Knox share a lot of common ground in the matters of birth control and social support systems: I’m sure we agree that these measures help prevent many woman from feeling that they need to consider abortion in the first place. Moreover, there are conditions other than abortion access that moral people need to consider. For instance, one wonders whether these atrocities would have been able to go on for so long if the victims had not been women and infants of color. Moreover, these many of these women went to Gosnell because they felt that they couldn’t afford to raise a child and because they couldn’t afford to go someplace else. However, I have to agree with my colleagues in the pro-life movement that Knox’s primary argument, which has been made by many pro-choicers since Gosnell’s crimes came to light in 2011, does not adequately account for the facts as articulated in the Grand Jury report.

First of all, Gosnell’s second adult victim, Karnamaya Mongar, died during a legal abortion when she was 19 weeks pregnant. Injured patients and their physicians repeatedly urged federal investigators to inspect Gosnell’s clinic. This was not done. The Grand Jury’s report read:

“The callous killing of babies outside the womb, the routinely performed third-trimester abortions, the deaths of at least two patients, and the grievous health risks inflicted on countless other women by Gosnell and his unlicensed staff are not the only shocking things that this Grand Jury investigation uncovered. What surprised the jurors even more is the official neglect that allowed these crimes and conditions to persist for years in a Philadelphia medical facility. THE STATE DEPARTMENT OF HEALTH NEGLECTED ITS DUTY TO ENSURE THE HEALTH AND SAFETY OF PATIENTS IN PENNSYLVANIA’S ABORTION CLINICS.”

The report goes on to document numerous instances in which state officials failed to inspect Gosnell’s clinic even in the face of repeated complaints of patients who had contracted sexually transmitted parasites and sustained severe injuries. Even the death of 22-year-old Semika Shaw in 2002 didn’t lead them to action. The Grand Jury asserted:

“Staloski [a state official] blamed the decision to abandon supposedly annual inspections of abortion clinics on DOH lawyers, who, she said, changed their legal opinions and advice to suit the policy preferences of different governors. Under Governor Robert Casey, she said, the department inspected abortion facilities annually. Yet, when Governor Tom Ridge came in, the attorneys interpreted the same regulations that had permitted annual inspections for years to no longer authorize those inspections. Then, only complaint-driven inspections supposedly were authorized. Staloski said that DOH’s policy during Governor Ridge’s administration was motivated by a desire not to be ‘putting a barrier up to women” seeking abortions.’”

This, IMO, is what extremist ideology leads to: the principle becomes more important than the impact it has on actual people. (It is, in my view, the inverse of pro-life ideology that does not make moral or legal exceptions for abortions done in emergencies, to save the lives of pregnant women; or, perhaps, complete and utter opposition to Plan B because it *might* prevent an embryo from implanting.) I know that legislators weren’t consciously thinking, “One women dying is better than having to close an abortion clinic,” but that was essentially what happened: Karnamaya Mongar died due a lack of medical and legal regulations. If Gosnell’s clinic had been shut down in the *1980s* when his grisly practices were first reported, Karnamya Mongar would not have died there.

Moreover, just how available does Reverend Knox want third trimester abortion to be? Does he think that there should be any vetting process or restrictions at all? Or, do such restrictions inevitably lead women to people like Gosnell? Even though women don’t casually walk into abortion clinics at 32 weeks and say, “Gee, I’ve suddenly decided that I don’t want to be pregnant anymore,” I don’t think the law should even recognize a hypothetical right to do so. To affirm the morality of such an act, even in theory, is an affront to logic.

Furthermore, as a disability studies scholar I know that 32-week abortions do occur in real life. Hundreds of them are done a year in response to the discovery of a fetal anomaly late in pregnancy. Dr. Warren Hern, for example, openly admits to doing many terminations in the last weeks of the third trimester when fetal anomalies (and I mean *any* fetal anomaly) are found. For instance, one of his papers on selective abortion for fetal anomaly in the late third trimester included examples of fetuses with:

Down Syndrome and a common heart defect “3-chambered heart,” commonly corrected via surgery

This abortion was complicated by the fact that Hern’s first attempt at intra-cardiac injection failed to stop the baby’s heart. The abortion was completed 2 weeks later after a successful intra-cardiac injection, when the woman was 34 weeks pregnant.

Spina Bifida-myelomeningolcele and Arnold Chiari Malformation-Again, not fatal-many people with this disability not only survive, but lead full, active lives

Skeletal Dysplasia (Hern does not specify which kind of skeletal dysplasia the baby had, remarking only that the fetus had shortened tibia and femurs. This could indicate achondroplasia, the most common form of skeletal dysplasia. This condition is a disability, not a fatal disorder. He does not mention features that are commonly associated with fatal forms of skeletal dysplasia, such as an unusually small chest cavity (thanatophoric dysplasia) or inter-utero fractures (Osteogenesis Imperfecta, Type II). Nor does Hern mention any of the features indicative of other non-fatal forms of skeletal dysplasia, such as clubbed feet or bowed arms/legs.)

Goldenhar Syndrome-Like the case cited above, this may or may not have been a fatal form of the disorder.

At least two out of four of these conditions are NOT “incompatible with life,” the other two being open to interpretation: we don’t have enough information to know whether or not the conditions were fatal. Moreover, Hern’s own prose indicates that he does not restrict his practice to anomalies that are fatal. Hern describes the ethical ramifications of his work as follows:

“There are many ethical issues that can be raised concerning the termination of an abnormal fetus in a twin pregnancy. The one group that has reported selective terminations at the early third trimester expressed objections to the application of this technique in later pregnancy. Chervenak stated that abortion in the third trimester is morally justified only in the case of lethal or catastrophic abnormalities such as anencephaly. It is our view that the decision to choose selective abortion in the 3rd trimester can be made by a woman and her partner in the case of a valid and documented fetal abnormality. It is up to the physician to determine whether he or she accepts the potential risks and ethical questions of this procedure, and to discuss these issues with the requesting patient and her partner.”

I feel compelled to ask: Is Knox ‘ok’ with this? Does he think that there should be more clinics like this, in which such abortions are readily obtainable? Is that how he would prevent women from going to people like Gosnell? Moreover, what distinguishes Hern’s work from what Gosnell did? Does the difference lie in the location of the babies?Can Knox provide a logical reason for why ending the life of a baby in utero is ok, but ending the life of a newborn is evil? Does the difference lie in how these lives are ended? Is Hern’s work acceptable because administering KCL directly into the baby’s heart usually provides a quicker end then severing his/her spinal cord? Because Hern’s method of abortion was “cleaner,” resulting in an intact, stillborn baby instead of a bloodied corpse? These questions go to the issue of logical inconsistency in some pro-choice quarters. People on both sides of the abortion debate were horrified to learn that Gosnell killed infants who survived abortions at 22, 24.5, 26, 28, 29.5 weeks gestation. Yet, many of these same people defend a woman’s right to employ the services of Dr. Hern at 34 weeks gestation, so long as her fetus has a documented disability. (Hern will also abort fetuses for any reason at up to 26 weeks gestation, as documented on his website.) This moral distinction between a viable baby inside the womb and a viable baby outside the womb strikes me as intellectually dishonest.

What specifically makes the legality of such abortions morally superior to requiring that a woman at that stage of gestation give birth to her now-viable fetus? Is it because of “choice”? How far does choice extend? Are there any limits that Reverend Knox would consider valid? Is the woman’s right not to have a child against her will so absolute that the act of aborting a fetus at 32+ weeks receives God’s blessing?

I know that many women who obtain abortions at this point in a pregnancy are desperate, grieving people. Clearly the women who went to Gosnell were either raised in an environment in which they were taught that they didn’t deserve any better, and/or were so desperate that they were willing to subject themselves to his filthy, dangerous clinic. I know that parents who obtain abortions for fetal anomaly at Hern’s clinic are broken-hearted. However, this tells us about the woman’s feelings and motivations, it does not establish that such abortions are morally acceptable or should be allowed under the law. To do so uses feelings as a basis for practice. I’m sure Knox agrees that autonomy is not a god. Yet, I can’t help but feel that his position deifies personal sovereignty. Yes, it is immoral to ignore the conditions that lead women to Gosnell. Nevertheless, these conditions need to be addressed via increased social support and non-violent reproductive choices like birth control. Increasing the availability of late-term abortion is not a moral response to Gosnell’s actions.

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15
Sep 2012

A Response to “Disability, Prenatal Testing, and the Case for Moral, Compassionate Abortion”: Part 1

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RH Reality Check has published yet another article extolling abortion in the case of fetal disability. (I use the word extoll because these articles portray fetal disability as a a particularly important reason for pro choice policies. By using disability in this manner, disability-selective abortion is extolled-it is portrayed as something positive that needs to be preserved). Many of us at All Our Lives follow the site, and our own Mary Krane Derr has written articles for them in the past. Yet, we have noticed a pernicious pattern of ableism that permeates the site. By this I mean that the perspectives of the disabled community and issues facing that community are rarely acknowledged. Ablebodied perspectives dominate, and abortion is often cited as an important tool for the prevention of disability. Recently, the site published an article entitled, Disability, Prenatal Testing, and the Case for Moral, Compassionate Abortion.” Despite the editors eventual decision to allow a disability advocate to respond to this article, I feel that a sense of tokenism overshadows that decision and that further analysis is necessary.

The piece is so full of ableist preconceptions and misinformation that it is impossible to address them all in a single blog post. Therefore, I have decided to complete a series responding to the issues she addresses. In this blog post, I will explain why Sierra’s piece is condescending, ahistorical, and embraces eugenic ideas related to the continued influence of ableism in our culture. I will also consider the issue of ablebodied privilege and its influence on discussions related to ableism and selective abortion. Moreover, my approach to this issue reflects personal beliefs and experiences that not every All Our Lives board member shares. While we are united in our desire to see such abortions end, we may not all take the same approach to addressing this issue. Finally, before I begin I will briefly address the pain that parents who interrupt pregnancies impacted by a prenatal diagnosis may feel when reading a disability rights analysis of such decisions.

A Brooding Conflict

The intensely personal, private and painful nature of abortion for fetal anomaly makes this subject difficult to address. Many pregnancies terminated for reasons of fetal anomaly were wanted. These parents may feel that they did not “terminate a pregnancy,” but released their child’s spirit and/or saved him or her from a lifetime of suffering. These parents were motivated by feelings of love. Hence, it is extremely painful for these individuals to hear that their agonizing choice was at least partially influenced by ableism. Nevertheless, I do not feel that this is something disability advocates can avoid when discussing the social pressures that contribute to disability-selective abortion. As Amy Sequentia, a nonverbal autistic rights advocate notes, “We don’t hate parents but we are not going anywhere. We will continue to talk and write about the need for acceptance – ours and their children’s. Autistic children are part of the autistic community. And we will point out the flaws in the autism “advocacy” organizations – they never invite us when talking publicly about autism.” Similarly, any discussion of reproductive rights and disability is going to involve difficult discussions about ableism, and that is going to come up in reference to the painful decisions parents make to terminate wanted pregnancies. Hence, I want to invite everyone reading this to try and do so with compassion for themselves and for the moral challenges we all face as we undergo the difficult experience of being human.

Logical Inconsistency

Women have abortions for a plethora of reasons, only one of which is fetal disability. Sierra has argued that advocates’ objections to disability-selective abortion conflate fetuses with born children, yet she has chosen to specify these abortions as specifically “moral and compassionate,” a distinction which depends upon her perceptions of people who are alive right now. In order to argue that preventing someone’s birth is compassionate, one must make judgments about the experiences of people who are leading lives similar to that which the fetus is expected to lead. One must conclude that these experiences are sufficiently horrific to make not being born preferable to living that life. Hence, specifying those particular abortions as compassionate while not categorizing the moral nature of other abortions DOES send the message that people with disabilities are better off not being born. Without such judgments, the decision making process related to these abortions could not take place.

Tone:

Sierra has a profoundly condescending tone toward her audience. She begins the article by saying:

“Note: If the headline didn’t already clue you in, this is controversial subject matter. If you come away from this article thinking that I advocate genocide of a disabled population or the coercion of women pregnant with disabled fetuses into abortion, that I hate disabled people or think that Down syndrome people don’t deserve to live, you have failed to understand my point. Please walk away from the computer, breathe deeply, and start again from the beginning… if you’re already angry, please stop reading and go get yourself a nice cappuccino. Have a beautiful day. And then, if you still really want to read this, take frequent breaks to punch a pillow with a “hello, my name is Sierra” badge stuck to it.”

This statement a) trivializes legitimate objections to her argument, b) insults the maturity of those who hold such objections by suggesting that we are incapable of responding to her article in a calm manner, c) insults the intelligence of her readers. (Really, this is controversial subject matter? I totally didn’t know that: thanks for telling me!)The pseudo-levity of her remarks attempts to make righteous indignation the stuff of humor. Reading that paragraph is like being talked-down to by a preschool teacher: “Oh, honey, these issues are just too complicated for your little mind to understand. Here, have a cookie.”

Token “Support”/Ahistoricism

Sierra goes on to write, “The disability rights movement is hugely important and I support it. It’s especially vital for individuals with mental illnesses, who are often judged as “not really disabled” because there’s nothing visibly wrong with them. Disabled people have a long history of being medically abused, used as test subjects without consent, being abandoned or forced to live in squalor, and being generally reviled, disrespected and treated like freaks. We need a movement to rectify that and prevent it from ever happening again [my emphasis]. I’m glad we have one. Now. Here’s where I depart from Zylstra and other activists…” Sierra’s statement ignores the fact that the mistreatments she attributes to the past still go on today. (Perhaps her use of the term “rectify” in the present tense was meant to be an acknowledgement of this fact, however, her statement still puts the burden of social change squarely on the shoulders of the disability rights movement. It fails to acknowledge or reflect an understanding of the fact that disability rights impact everyone and, thus, should be everybody’s fight.) Moreover, her proceeding argument completely ignores the fact that these problems are caused by society, not by being disabled. If those abuses were to cease, people with disabilities could go on being disabled without their disabilities being an impediment to their well being, because the world would be a hospitable place for people of all abilities.

Sierra also seems to ascribe a disproportionate amount of historical and epistemological importance to her article. Shortly before launching into a discussion of “fetishism,” she writes, “Okay, now let’s go on (assuming you’re not already plotting my demise)…” Contrary to her rather aggrandizing conception of this essay, Sierra’s argument isn’t new. It certainly isn’t going to shock disability activists and allies into “plotting her demise.” Disabled people have always dealt with the influence of such attitudes, whether they manifested in Plato’s suggestion that the state control procreation, or the early eugenicists’ efforts to sterilize those they viewed as disabled. Statements of approval for that effort have been percolating in our collective consciousness since time began. Moreover, while Sierra may not consciously support eugenics, she is accepting the ableist ideas upon which this movement was based. Ie, the fact that Sierra doesn’t want to resurrect the original eugenics movement and force people to be sterilized or euthanized against their will has no bearing on the existence of this phenomenon. Eugenic ideas still exist because ableism does, not because people who hold those ideas are part of an evil conspiracy.

The tendency of geuninely good people to embrace ableist ideas can be seen in the plethora of respected leaders who supported the original eugenics movement. Plato, Oliver Wendel Holmes, WEB DuBois, and even Helen Keller (Pernick, 103) supported eugenic philosophies. Sierra’s argument is also not unique in contemporary discourse. Contemporary articles and statements in support of disability-selective abortion have been made by Joycelyn Elders (Freedom of Choice Act of 1989: Hearings before the Committee on Labor and Human Resources, United States Senate, One Hundred First Contress, second session on S. 1912, to protect the reproductive rights of women, and other purposes, March 27 and May 23, 1990, Reprints from the collection of the University of Michigan Library, pg. 199). Virginia Ironside, Claire Raynor, Peter Singer, Julian Savulescu, and a host of other individuals. Sierra’s argument simply isn’t the theoretical breakthrough that she seems to think it is.

Sierra attempts to distance her article from its connotations of ableism by stating: “I believe that it is possible and desirable to respect disabled people while still working to eliminate genetic disorders so that children who might have had Down syndrome or cystic fibrosis (or any other disease) have a chance to be born without them. I believe that abortion of a disabled fetus can be a compassionate choice made for morally sound reasons, and does not at all conflict with the respect due to disabled people. I am firmly pro-choice, and I believe strongly that the wellbeing of all born persons in a family is paramount before considering the needs of a fetus. My position is that fetuses are incapable of being self-aware and therefore cannot experience suffering the way born persons do. The prevention of suffering is central to my moral beliefs.”

In short, Sierra is saying, “I’m not an ableist person.” This, however, ignores the systemic phenomenon of ableism by which her view of disability is impacted. Perhaps part of Sierra’s ignorance can be attributed to the so-called “hierarchy of oppression” that hinders the discussion of ableism and pits issues of disability against those related to other minority groups. It’s likely that people who attend diversity assemblies at their schools are never told that diversity includes disability. While race, gender, religion and sexual orientation are discussed, disability is rarely, if ever, addressed. History classes ignore the disability rights movement, the murder of disabled people during the Holocaust, the original American eugenics/euthanasia movement, and other aspects of disability history. If curricula included this information, perhaps Sierra would have a better understanding of why her article reflects prejudiced attitudes. Despite Sierra’s attempt to distance “the prevention of suffering” from the oppression of disabled individuals, an examination of history reveals that this sentiment was shared by many eugenics supporters, many of whom felt sympathy for individuals who they felt were leading inferior lives. Even the US Eugenics Records Office, in their 1914 recommendations for the prevention of disability, argued:

“With euthanasia, as in the case of polygamy, an effective eugenical agency would be purchased at altogether too dear a moral price. Any individual once born should, in the opinion of the committee, be given every opportunity and aid for developing into a decent adulthood of maximum usefulness and happiness. Preventing the procreation of defectives rather than destroying them before birth, or in infancy, or in the later periods of life, must be the aim of modern eugenics.”

Like Sierra, the people who wrote this report had feelings of charity towards disabled individuals. They did not recognize a connection between their efforts to prevent such births and the oppression of disabled people. Similarly, Alexander Grahm Bell tutored many deaf people in lip reading and elocution, but his attempts to “integrate deaf people into society” were partially motivated by his desire to keep deaf couples from meeting, forming relationships, and procreating. In fact, Bell’s own words in support of mainstreaming the deaf closely mirror Sierra’s acknowledgement of the abuse disabled people have historically experienced. In 1883, Bell gave an address to the National Academy of Science in which he stated that laws forbidding the intermarriage of deaf individuals were not enough. Rather, the integration of deaf individuals and the subsequent dissolution of deaf communities was paramount. In support of this solution, Bell argued:

“Whatever the cause, it is certainly the case that adult deaf-mutes are sometimes hampered by the instinctive prejudices of hearing person with whom they desire to have business or social relations. Many persons have the idea that they are dangerous, morose, ill-tempered, etc. A deaf person is sometimes looked upon as a monstrosity to be stared at and avoided (Shapiro, 97).”

Because of his strong language in support of integration, Bell was regarded as a champion of the deaf, but his influence lead to a moratorium on the teaching of ASL. (Shapiro, 94-98). Like Sierra, Bell saw himself as a “supporter” of the disability rights movement. Looking for the cause of antipathy toward the disabled within his own ideology never occurred to him. He never physically harmed a deaf person, and he was probably fond of the deaf students he worked with. I’m sure that some of those students benefited from his instruction, but because he nurtured what seemed to him to be the self-evident belief that people were better off not being born deaf, he harmed the deaf community.

Sierra has embraced the same fallacy. It is not possible to support the elimination of something without acceding to its inherent inferiority. The belief that the prevention of disability via selective reproduction has a special moral status is eugenic thought, even if that philosophy isn’t forced unto others via legal means. One cannot be a legitimate ally and suggest that we ought not to be born as we are. That position does, in fact “conflict with the respect due to disabled people.” It strips us of our identity and boxes us into a caricature of personal tragedy.

Privileged Assumptions

In between insulting her audience and suggesting that her detractors head to the nearest Starbucks, Sierra makes huge assumptions about things that she has not experienced. She bases her assumptions about disability upon her experience of growing up in poverty. The two are simply not the same thing. While issues of class and disability certainly intersect, being an impoverished non-disabled person does not confer knowledge of what it is like to live as a disabled person of any economic background. She “wagers” that the disabled wouldn’t have chosen to be disabled, an assumption based entirely on hubris. As a person with Nonverbal Learning Disorder, I think that some of the social cues that I have difficulty picking up on are bizarre, immoral and destructive. I do not feel that being born non-disabled and growing up to accept these practices as “normal” would have benefited me. Most people I know in the disability rights and studies communities embrace their disabilities as a fundamental part of their identities that should not be changed. A colleague of mine expressed this sentiment well when he said, “Without dwarfism, there is no Joe.”

Perhaps Sierra’s tone and logical inconsistency are related to her own unacknowledged privilege. Despite Sierra’s experience of childhood poverty, she does not seem to recognize that like affluence, able-bodied-ness is a privileged status subject to social influences. Because she doesn’t realize that being able-bodied predisposes her to view that status as universally desirable, she assumes that all disabled people want to be able-bodied like her. She locates the problem of disability oppression within disabled bodies themselves rather than in the attitudes of our society. (Moreover, despite her comparison of disability to the poverty she experienced, I don’t see her using that circumstance to defend “moral and compassionate” abortion for would-be indigent fetuses…)

The same issue of privilege impacts conversations about ableism and selective abortion. Most people defending such abortions have had the privilege of assuming that able-bodied-ness is the state against which the experience of embodiment will be measured. Telling these people that able-bodied and disabled are social constructs conflicts with everything they have been taught to believe. Moreover, like racism, people tend to define ableism as a personality flaw rather than a systemic phenomenon that drives oppression. Alan B. Johnson expresses this difference succinctly in Privilege, Power and Difference when he writes: “Racist isn’t another word for ‘bad white people,’ just as patriarchy isn’t a bit of nasty code for ‘men.’ Oppression and dominance name social realities that we can participate in without being oppressive or dominating people (Johnson, 10).” This is also true of ableism. It’s not that Sierra, the editors of RH Reality Check, or parents who terminate pregnancies impacted by disability are bad people, but they are impacted by an oppressive system that defines able-bodiedness as the norm and encourages the elimination of characteristics that deviate from that state (disability). Hence, it is possible for them to behave according to ableist preconceptions without harboring malice toward disabled individuals. This is something that Sierrra fails to recognize. This post has attempted to explore the logical and philosophical problems with Sierra’s argument. Future posts will address class/financial resources, suffering and Sierra’s use of the term “fetishizing.” Moreover, because Sierra used a Christianity Today article as her only source, my final post will address issues related to disability and religion.

As shown in the comment section, the author of the original article has written a response to my critique. It can be found here, and I will adress it in a subsequent post.

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02
Mar 2012

Disturbing Changes To Our Bodies, Ourselves

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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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31
Jan 2012

Disability and the Concept of Dignity

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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 in danger of undergoing a forcible 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 in my own home, and in familiar places such as the elementary school I attended. I also have problems with coordination, which means 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. Annoying nuisances, 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 sexually assaulted by a peer, 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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