With the tragic and heartbreaking news of Robin Williams’ death by suicide, many people have been contemplating the reality of severe clinical depression and asking how it could have crept into the life of someone as talented, fulfilled and beloved as Robin Williams. I myself derived hours of enjoyment, solace, and even edification from his movies, some of which dealt sensitively with the topic of suicide. Perhaps his death illustrates that depression is not a character flaw; nor is it a respecter of persons.

I am more than disheartened to witness the inevitable comments that have appeared on the internet in response to the news that he was battling early onset Parkinsons’ disease. Underneath an internet story on this news, one commenter wrote:
It gives some basic level of comfort in that Robin was successfully fighting his depression but got sidetracked by a disease with a lousy prognosis. I feel that his actions now weren’t of depression but of self determination. I truly feel, that when faced with imminent deterioration of function, the decision is that of the individual. I’ll miss you Robin, I grew up with you from age 10 on Happy Days and Mork and through your career, but I’ll always respect your decision.

As mentioned in the related news story, scientists have established that Parkinsons inhibits the production of dopamine, which, like serotonin and norepinephrine, is responsible for facilitating concentration, energy and feelings of well-being. Major depression is already indicated by a lack of these chemicals; hence, I imagine that Parkinsons-induced depression could push someone with preexisting depression into a psychological meltdown. Perhaps Williams situation frayed his connection with humanity’s innate survival instinct, giving previously checked suicidal impulses uninhibited access to his mind. Whatever the case, what happened on August 11th indicates that when he killed himself, Williams was not successfully fighting his depression: he fought valiantly, but he lost that battle.

Moreover, the respect this commenter is offering to Williams only exacerbates the situations of people with unmet mobility needs. We are approaching the second decade of the twenty first century, yet people who use wheelchairs, respirators, or other mechanical devices to engage our world; as well as those with psychological and cognitive anomalies that preclude our society’s narrow concept of independence, still lack the right to receive related services in their homes.

This would likely not have been a problem for Williams, who probably would have been able to fun the receipt of such services himself, as can others with a solid middle to upper class income. Hence the error of validating actions based on the resources of a privileged few: the underprivileged are always left to experience the negative consequences of that action. Such people need support, compassion, accommodation and access to treatment; not a choice between marginalization or death.

Ultimately, the attitude expressed by the aforementioned comment reflects a meme with universal and oppressive implications: Being impaired and/or requiring the help of others is worse than anything else. Death, despite its historical role of inducing near-pathological fear, is suddenly perceived as good. No one can know what lies beyond the grave, but let us not push ourselves or our loved one toward it with empty, privileged platitudes of “self-determination.” Instead, let us do the hard work of providing whatever individuals need to regain fulfilling lives.

There has been something I’ve been meaning to write for a while now: I think that it’s important to note that while All Our Lives supports the practice of safe sex, there is no need for people to engage in sex for sex’s sake. I often worry that some individuals, particularly people in their twenties and thirties, may feel obligated to have sex because that is what society expects them to do. Of course, the same problem applies to teenagers, who are impacted by the same message: there is a timetable on when someone should lose his or her virginity, and they had better do it before they grow up to be a 40-year-old virgin. Anyone who ends up in that situation has something wrong with him or her, either sexually, socially or psychologically. The latter mentality is oppressive to those who, for whatever reason, choose not to have sex.

While it is certainly possible for trauma or illness to affect someone’s libido, there are many healthy, legitimate reasons for avoiding sexual activity, either in the long-term or in one’s choice of partners. Some of them may include:

-Putting off the responsibility of sexual activity until one is more established in terms of a career or education
-Not having found the right person to have sex with
-Being temporarily uninterested in sex
-Having an asexual orientation
-Avoiding intercourse that does not match one’s orientation, such as when a lesbian who has not “come out” resists pressure to have sex with men.
-Spiritual decisions regarding the relationship between the individual’s body and his or her relationship with the Divine.

Personally, I’d say that being abstinent has been one of the healthiest decisions I’ve made in my life. I am waiting to have sex with someone with whom I am deeply in love, preferably within a marital covenant. That is what “works” for me, both spiritually and emotionally.

It is true that my initial choice to abstain was rooted in a concept of self-respect that was tied to my religious beliefs. However, as time went on, I also felt that sex would be source of stress and conflict in my life. During high school, college and graduate school, I struggled to take care of my basic needs and complete my schoolwork with the excellence that I wanted to achieve. I sense that attempting to manage birth control pills, ovulation calendars, condoms, etc would have been very burdensome, not to mention anxiety-producing. When I had irregular periods in 2006, I knew that it wasn’t because I was pregnant. (I was severely stressed.) I can’t imagine how awful I would have felt if I had had to worry about pregnancy every month. Because I was abstinent, STIs or pregnancy weren’t even possibilities, so I was free to focus on other things.
I still associate my abstinence with spiritual commitment and see it as a way of honoring my identity as one of God’s creatures. However, I am also proud of continuing to make the sexual choices that are right for me. When I have sex, it will be with the right person, at the right time, or not at all.

Hence, I want to assure readers who choose not to have sex that that choice is perfectly healthy and normal. No one should ever feel pressured to have sex because they have reached a certain age, or because our society maintains an ableist association between a lack of sexual activity and psychological infirmity.

So, if you have sex, make sure it’s in a situation where you feel safe, respected, and ready. If that means not having sex, that’s ok, too.

I recently became aware of a faction within the feminist movement calling itself the “Rad Fem” and/or “Womyn Born Womyn” movement. Those ascribing to this ideology hold that gender constructs are intractable. Those who are biologically male will always be male, even if the male in question identifies as a woman. (The same holds true for biological women who identify as male, though most rad fem analysis focuses on the former.) Because transwomen were initially reared as men, they have experienced male privilege. Hence, any man who transitions into a woman is appropriating the biological identity of women and imposing male perspectives unto the collective experience of women as a group. Such individuals view this alleged appropriation as misogynistic.

We live in a country where people are free to believe whatever they want, but many RadFems, such as those on GenderTrender, ignore the boundaries of basic civility by identifying, tracking, outing and then systematically harassing specific individuals. Such people are not content to voice their opinions; they seem to have a burning compulsion to make trans people’s lives as miserable as possible. People associated with Gender Trender have attempted to get people fired from their jobs and alienated from their social circles. They have engaged in online bullying of specific trans people. As survivor of bullying, this persecution breaks my heart. These attackers have no concern for the physical, emotional, vocational or spiritual well being of their targets. It’s impossible to look into their hearts, but their behavior evokes the kind of unrestrained savagery displayed by the child antagonists of Lord of the Flies. Like their metaphorical counterparts, these attackers represent a vicious society that is controlled by humankind’s lowest instincts and which is devoid of compassion.

Radical Feminism is an anomaly in the feminism movement. There are fringe factions in every group. RadFems strike me as the Randall Terrys of the feminist movement-their hateful rhetoric is an embarrassment to the feminist movement in the same way that Terry’s besmirches pro-lifers. Similarly, the rhetoric of some in the RadFeminism movement reminds me of Peter Singer’s ableist promotion of medical rationing, involuntary euthanasia and infanticide, which he cloaks in the guise of philosophical discourse. For instance, in regard to their statements that they want transgenderism to disappear from existence, some RadFems have reassured detractors that they don’t want to physically injure or murder trans people. Similarly, Peter Singer has said that he doesn’t want to kill disabled people who can conceive of themselves over time and have a preference to go on living. Well, thank goodness for small favors! Surely society should have higher standards than that…

I anticipate that in the future there will be more and more dialogue between trans and disability advocates, as we experience similar forms of social oppression. (Bodily difference, discontinuity between the kind of body our society expects and the kind of body one actually has, interaction with the medical establishment, the current need for accommodation in regards to name changes, living arrangements, etc.) This dialogue will become increasingly valuable as the disabled community wrestles with the phenomenon of transableism, and how best to evidence respect for able-bodied persons who identify as disabled. Finally, I hope that those of us who identify as progressive, consistent pro-lifers can be party to creating a society in which every person is loved, valued, and treated with dignity.

Recently, Jezebel published an article titled, “Church Saves Fetus with Downs, Everyone Lives Happily Ever After.” I find this article’s perspective to be perverse. I feel that its cynical tone represents yet *another* example of the mainstream pro choice movement shamelessly *using* the disabled to promote its agenda. (The mainstream pro-life movement does this as well, though in different ways.) Presumably, the woman/parents in question went to her/their priest for help. The mother and her partner decided to follow the priest’s advice and give their child up for adoption. According to Jezebel,the priest’s advice/actions amounted to this:

Here’s a heartwarming story about a Reverend who learned of a young couple planning to abort because their child, if carried to term, would have Down syndrome. “But abortion is sin!” the pastor said (we’re paraphrasing). “Let me pressure you into carrying to term by hastily crowdsourcing an adoptive family!”

Here’s the thing: If you go talk to your spiritual leader about terminating a pregnancy, there’s a good chance that he or she opposes abortion and will try to dissuade you from having one. (Not that all religious leaders feel that way, but many do.) The woman in the case was legally free to choose an abortion, and she decided not to do that. She was free to refuse the priest’s offer, and she accepted it. The fact that the parents involved were free to reject his suggestion isn’t enough for Katie Baker. Perhaps the most sanctimonious part of the post read:

So many mistreated babies and kids with Downs live terrible lives. Instead of throwing resources at a nonviable fetus, why can’t the church help children with Down syndrome that are already alive? Because anti-abortion folks care more about fetuses with fairytale narratives than actual babies.

I deeply resent Baker’s use of the story to imply that opposing the abortion of disabled fetuses indicates a lack of concern for other disabled children, and her assertion that finding a home for a disabled fetus amounts to nothing more than a “feel good” story.” This is demeaning to anyone who is living with a disability and to everyone who has chosen to bear such a child. Incidentally, how many children with Down Syndrome have you adopted, Katie Baker?

Many of the comments on this article are disturbing, as well. For instance, one person wrote:

As good Christers, we realized that we couldn’t abort this fucked-up child we no longer want. Which, obviously, means that Jesus wants us to mail it to someone and then try again for one that will look good on our Christmas cards. Have a blessed day!” 7/10/13 4:39pm

This comment makes me want to use profanity. People with disabilities are not “fucked up.” As a representative of our ableist culture, however, the commenter certainly is. Given a choice between being him/her and being a person with Down Syndrome, I’d choose the latter any day.

Another comment was more restrained, but no less ableist:

Great, I’m happy this couple found a way to deal with their singular situation, but that does not mean this sort of thing is a viable way to solve the problem of unwanted and/or non-viable fetuses. What happened to all the “discarded” families that were not chosen? Did they run out and adopt a different DS baby? 7/10/13 4:21pm

I can’t help but suspect that the distinction this commenter draws between “unwanted” and “non-viable” indicates a conflation of disability and death. Ie, a 23-week old fetus without a disability is “unwanted.” A 23-week-old fetus with a disability is “non-viable.” Both can be aborted, but the latter fetus “wasn’t viable” anyway. (Despite the fact that there are plenty of former “non-viable fetuses” with Down Syndrome walking around.) This kind of conflation may make some people feel better about aborting, but it is not based on science.

After I posted my perspective on Jezebel’s Facebook page, I noticed the following statement placed above the article:

[Note: According to the Washington Times, the Rev. reached out to a couple he heard was planning to abort; they hadn’t considered adoption before and his offer was unsolicited. So the Facebook message isn’t exactly truthful.]

There is nothing in the Washington Times article contradicting the implication that the parents went to the priest for advice and/or solace. Many parents dealing with a prenatal diagnosis do so, whether they choose to terminate or carry to term. Maybe “reached out” means ‘the priest heard about the couple’s plans from his secretary and contacted the couple,” OR, more likely, it means, ‘The devastated mother/parents went to their priest in their hour of need, and told him that they were considering abortion. The priest *reached out* to them and offered to find an adoptive home.’ I suppose that the “truth” behind that part of that situation depends on how one interprets the phrase “reached out.” IRREGARDLESS, Ableism is Ableism. No disability advocate I know, most of whom are pro choice, would ever be “ok” with the tone of this article, because most people in our movement see the decision to birth or adopt a disabled child as something more than a “Christian reality TV series.” Furthermore, the author’s protestations of concern for disabled children are hollow unless she herself is doing more than what the church, or the most active parts of the disability rights movement, do for people with disabilities. Has she participated in ADAPT protests in support of the Community Choice Act? Is she overseeing the educational needs of disabled children in foster care? Has she adopted any children with special needs? Does she give a crap about any of those things beyond using them as an ideological cudgel? Again, I repeat my question: How many mistreated children with Down Syndome, for whom you profess to be concerned, have you adopted, Katie Baker??

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.


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.

As shown in the comment section, the author of the original article has written a response to my critique. It can be found here.

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.

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.