Analysis Abortion

Disability, Abortion, and Ethics: A Response to Sierra

s.e. smith

A recent piece by Sierra published by Rewire argued for the morality of aborting a disabled fetus. This is a response to that argument.

Cross-posted with permission from Tiger Beatdown.

I’m still seething over this post at Rewire, in which I am essentially informed that my life has so little value, is so not worth living, that I was such a burden on my father to raise, that I should have been aborted. Things like this are why I have problems interacting with the mainstream reproductive rights movement, which seems bent on using us as a tool just as much as the right is. In this piece, in which not a single actual living disabled person appears, the author proceeds to lay out an argument for abortion for disability that has, rightly, gotten the disability community up in arms.

It starts with a very dismissive, snide, flip introduction in which the author effectively says ‘read this or not, I don’t really care, but don’t hate me!’ The key sentence of the introduction tells you a lot about what is to follow: ‘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…disagree.

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But let’s take Sierra’s points one by one, because it seems that whenever disabled people react with anger to rhetoric like this, we’re penalised for it. So, Sierra, here we go. Prepare for logic.

Sierra points to an article about prenatal testing, which I happen to agree is great science. We can find out more about a fetus than ever before with the benefit of tests which allow us to make informed choices about the pregnancy. Those choices can include abortion, preparing for birth, taking special precautions, and other measures that are private medical decisions. Inevitably, the fact that it’s possible to test for many common disabilities means that abortion for disability is going to come up as a topic.

This is a fraught ethical subject, and it’s fraught in no small part because of the social devaluation of disability. On the right, people with disabilities are fetishised as tools and instruments to a larger end; conservatives make sweeping statements about ‘respecting life’ when it comes to fetuses who might be born with disabilities, though of course they do nothing to support those fetuses once they’re born. This rhetoric does not allow room for the fundamental humanity of people with disabilities. Meanwhile, the left treats us like we don’t exist and aren’t a part of society, and don’t belong in society, frequently advancing arguments like Sierra’s: that abortion for disability is, quote, ‘a positive moral choice.

She says the article fetishises disability. Again, I agree on this point. Like a lot of media, it talks about disability as a ‘gift’ and the author, like Sierra, apparently didn’t feel the need to include the voices of actual disabled people in her piece. Sierra proceeds to give lip service to the disability rights movement, but here’s the moment where she goes off the rails:

‘Respecting the rights of disabled people does not mean honoring or celebrating disability itself.’

An actual recordskip occurred in my house at this moment. Excuse the fuck out of me, but some aspects of the disability rights movement absolutely are about honouring and celebrating disability itself. I’m disabled and proud. I love who I am and I’m not settling for this body and mind, dealing with it because it’s there, overcoming anything, or making the best of a bad deal. I am who I am because of my disabilities, I love who I am, I love my disabilities as part of myself. You’re better damn well bet I’m going to honour and celebrate that, and raise my fists in solidarity with disabled people all over the world who feel the same way.

At the same time, that doesn’t mean all disabled people share that sentiment and experience. And that’s okay, because there’s room in disability rights for everyone. What I am pushing for is disability as a value-neutral status that individual disabled people, not the people around them, get to make of what they will. Maybe that means celebrating your amazing body. Maybe that means corrective surgery. Maybe that means something else entirely.

‘I’d wager most people who are disabled would rather not be.’

Wrong. Maybe instead of speculating about the experience of disability, you should have consulted actual people with disabilities, explored the vibrant and lively disability rights movement, and interacted with the people you’re writing about. I’m assuming you didn’t think to do that because you apparently believe we live lives of unrelenting suffering, and/or we can’t communicate with nondisabled people; or was every potential interview subject too busy to fit you into their schedules between morning misery and afternoon moping?

Sierra says:

I get that who we are is shaped by experience and that many disabled people consider disability to be integral to their personalities – just as I see poverty as a formative experience for me – but I doubt they would have chosen to be disabled in the first place. Would they have voluntarily given up able bodies for the wisdom earned from being disabled? Would they refuse treatment, if it were available? Would they choose to suffer disabilities just so that their parents could have the “reward” and “special gift” of raising them?

Let’s deconstruct this a bit. Again, Sierra is speculating on an experience that is not hers, and she’s making assumptions based on her own view of the world. She ‘doubts’ that we would choose to be disabled. She doesn’t know that. As she herself acknowledges in her own snipey introduction, fetuses aren’t capable of making choices (we’re focusing, for the purpose of this piece, on congenital and genetic disability rather than acquired disability). I can say, from my own experience, that I wouldn’t choose to be any different even if, yes, sometimes my disabilities are frustrating and pose obstacles for me. I can also say, from my own experience, that I have refused some treatments for my disabilities, and so do some other people with disabilities.

In fact, some people forcibly labeled as disabled, like some autistic people and some Deaf/hard of hearing folks, don’t identify as disabled. And they refuse treatment for what they (rightly) see as a natural human variation.

Speaking of fetishising disability, Sierra, I’m not ‘wise’ because I’m disabled. I’m a human being. Disability hasn’t conferred any more or less wisdom. Disability is not ‘suffering,’ and the fact that you use this word clues me in to the fact that you have a very ableist view on the world, for all that you attempt to use language from the disability rights movement to convey your understanding of what it’s like to live with disability. And you’re centring parents here in a rather striking way.

Wanting to eradicate a condition that causes suffering or dependence in a population is not the same as wanting that population to die.’

Statements like ‘I want a cure for autism‘ or ‘I want a cure for Down Syndrome’ are eliminationist in nature. These statements indicate that you want an entire population to disappear. And, newsflash, attitudes like these are why parents who torture, abuse, and kill their disabled children are often not held accountable. Because raising a disabled child is such hard work and the extenuating circumstances should surely be considered when evaluating the case.

Sierra and I actually agree on point two; acting like disabled children are some kind of special lesson and growth object is indeed dehumanising and gross. That said, disability doesn’t create inherent suffering. It’s notable that she focuses on only two disabilities, Down syndrome and cystic fibrosis, in this piece. I’d be curious to know which other disabilities she believes fall under the rubric of ‘suffering.’ Individual parents need to make individual choices based on available information about the pregnancy and their lives, something I think Sierra and I can also agree upon, but she’s pushing very hard on the argument that abortion for disability is almost necessary if you want to make the correct ethical choice for a pregnancy.

Simply put, it’s not. It’s not like the idea of aborting for disability is anything new, or that parents don’t get a lot of pressure to jump to abortion rather than more information as soon as a prenatal diagnosis is delivered. Choosing abortion because you don’t have the capacity to care for a child is a reasonable ethical choice, and it’s not the only option, though I’d note that people are not exactly lining up to adopt disabled children, nor are social services rushing to provide support to disabled children and their families. Choosing abortion because you feel no one could offer the child a good quality of life is a value judgment on someone else’s life, but it’s also a personal choice because you’re the one carrying that fetus, which makes it yours to make and no one else’s. Ultimately, the option people feel most comfortable with is a personal decision, and that decision is the most ethical one for a given pregnancy.

Next, she brings up the issue of class, a key component in this discussion, as I’ve actually talked about here in the past. However, Sierra’s approach to it is utterly backward. Rather than saying we need to talk about the lack of social support for people with disabilities, including both the lack of financial resources and the ableism rife in this society, she apparently thinks the solution is to abort disabled children. Because their lives aren’t worth living (see ‘suffering’ above) and their parents can’t afford to give them the quality of life they deserve, the natural solution is not agitation on a larger scale for social change to tear apart the system that forces people to make the decision to abort for economic reasons, but to simply promote abortion as the right moral choice. No one should have to abort a children for economic reasons or for lack of social and community resources, and that is what we should be working towards.

Her next point rehashes some very old, tired, and boring arguments about how caregiving is so hard and won’t someone think of the family. Here’s the thing: Providing care for any child is difficult, and disabled children do present some extra challenges. The problem here, though, is not that children with disabilities are inherently difficult to care for, but that caregivers enjoy absolutely no social support.

Accessing respite care, funding for aides, daycare, and other forms of assistance is virtually impossible, unless you are, yes, very wealthy. We need to be talking about this. We need to be asking why discussions about abortion for disability focus on how awful disability is and how painful it is to have a disabled child, instead of how terrible it is that society can’t be bothered to promote the welfare of disabled people. We need to be asking why arguments like Sierra’s are advanced over and over again, and why people like Sierra don’t examine the deeper social issues going on here.

In her next segment, Sierra makes some striking assumptions about life with disability. She focuses specifically on cystic fibrosis, a condition that actually has variable presentations. And, thanks to medical advances, is much more manageable today than it once was. Does that mean I think people carrying fetuses who test positive should be forced to carry them to term? Absolutely not. But it does mean that I think people making decisions about abortion on the basis of disability need to actually do their homework to find out what they, and their children, might be facing if they decide to continue with the pregnancy.

Finally, she says that the article she references erases parenting, and I agree on that point too. Much anti-choice rhetoric completely elides the bodies of the adult living people who can survive independently who are rather intimately involved in the situation. Ultimately, the pregnant person gets to decide whether to carry a pregnancy to term, for whatever reason. Much as people with disabilities are often talked about and around, pregnant people are often ignored by the right because they are an inconvenience; the right, like the left, doesn’t want to be confronted with the actual people who will be immediately affected by its rhetoric.

I’ve often said that choosing abortion for disability doesn’t mean that you hate disabled people. But when ableist society is contributing to the pressures on you to abort, you need to acknowledge that. I want all children to be born into homes where they are eagerly anticipated and will receive love and support throughout their lives, no matter what their disability status might be. And I want all parents to have all the information they need about their pregnancies to make the best choices for them, and for their children. And I want all parents to have social support so they aren’t forced to make choices on the basis of external pressures like lack of money, lack of access to care, and other issues that can come up when making decisions about a pregnancy.

But I’m not going to sit still for someone telling me that my life is suffering, that my life is not worth living, and that ergo I should have been aborted and people like me should be aborted. I’m on the autism spectrum. There are a lot of people in the world who want to eliminate people like me. I’m not interested in playing the gross anti-choice game of ‘just think who might have been aborted!’ but I would like to point out that because there’s a widespread belief that autism is bad and should be eliminated, living autistic people, as in actual human beings who are around right now, face increased prejudice. That includes hate crimes committed against us, it includes discrimination, it includes abuse by parents and ‘caregivers.’

And that is a problem that articles like this contribute to. I don’t want to be used as a pawn by the right or the left to advance its own agendas about reproductive rights and parenting. Ultimately, parents need to decide what they are equipped for, and I want to provide a world where their choices are supported.

In a world where people, yes, celebrate and honour disability, our lives would be valuable and we would be considered on equal footing as nondisabled people. And in that world, people wouldn’t talk about disability in terms like ‘suffering’ and say that parents have a moral obligation to abort to ‘avoid inflicting suffering.’ They’d say that all parents have the right to make decisions about what happens inside their own bodies, on the basis of as much information as possible, and those decisions are private and not subject to public discussion and judgment.

This should go without saying but I’m saying it anyway: Please don’t bother leaving comments telling me that disability in general is the worst thing ever, that abortion for condition Xyz is morally sound because it’s so awful, that you had a friend once who wished she’d never been born, that progressives aren’t ableist at all and I’m just being unreasonable, that you have a disabled family member who’s just too much work, &c.

News Abortion

Anti-Choice Leader to Remove Himself From Medical Board Case in Ohio

Michelle D. Anderson

In a letter to the State of Ohio Medical Board, representatives from nine groups shared comments made by Gonidakis and said he lacked the objectivity required to remain a member of the medical board. The letter’s undersigned said the board should take whatever steps necessary to force Gonidakis’ resignation if he failed to resign.

Anti-choice leader Mike Gonidakis said Monday that he would remove himself from deciding a complaint against a local abortion provider after several groups asked that he resign as president of the State of Ohio Medical Board.

The Associated Press first reported news of Gonidakis’ decision, which came after several pro-choice groups said he should step down from the medical board because he had a conflict of interest in the pending complaint.

The complaint, filed by Dayton Right to Life on August 3, alleged that three abortion providers working at Women’s Med Center in Dayton violated state law and forced an abortion on a patient that was incapable of withdrawing her consent due to a drug overdose.

Ohio Right to Life issued a news release the same day Dayton Right to Life filed its complaint, featuring a quotation from its executive director saying that local pro-choice advocates forfeit “whatever tinge of credibility” it had if it refused to condemn what allegedly happened at Women’s Med Center.

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Gonidakis, the president of Ohio Right to Life, had then forwarded a copy of the news release to ProgressOhio Executive Director Sandy Theis with a note saying, “Sandy…. Will you finally repudiate the industry for which you so proudly support? So much for ‘women’s health’. So sad.”

On Friday, ProgressOhio, along with eight other groupsDoctors for Health Care Solutions, Common Cause Ohio, the Ohio National Organization for Women, Innovation Ohio, the Ohio House Democratic Women’s Caucus, the National Council of Jewish Women, Democratic Voices of Ohio, and Ohio Voice—responded to Gonidakis’ public and private commentary by writing a letter to the medical board asking that he resign.

In the letter, representatives from those groups shared comments made by Gonidakis and said he lacked the objectivity required to remain a member of the medical board. The letter’s undersigned said the board should take whatever steps necessary to force Gonidakis’ resignation if he failed to resign.

Contacted for comment, the medical board did not respond by press time.

The Ohio Medical Board protects the public by licensing and regulating physicians and other health-care professionals in part by reviewing complaints such as the one filed by Dayton Right to Life.

The decision-making body includes three non-physician consumer members and nine physicians who serve five-year terms when fully staffed. Currently, 11 citizens serve on the board.

Gonidakis, appointed in 2012 by Ohio Gov. John Kasich, is a consumer member of the board and lacks medical training.

Theis told Rewire in a telephone interview that the letter’s undersigned did not include groups like NARAL Pro-Choice and Planned Parenthood in its effort to highlight the conflict with Gonidakis.

“We wanted it to be about ethics” and not about abortion politics, Theis explained to Rewire.

Theis said Gonidakis had publicly condemned three licensed doctors from Women’s Med Center without engaging the providers or hearing the facts about the alleged incident.

“He put his point out there on Main Street having only heard the view of Dayton Right to Life,” Theis said. “In court, a judge who does something like that would have been thrown off the bench.”

Arthur Lavin, co-chairman of Doctors for Health Care Solutions, told the Associated Press the medical board should be free from politics.

Theis said ProgressOhio also exercised its right to file a complaint with the Ohio Ethics Commission to have Gonidakis removed because Theis had first-hand knowledge of his ethical wrongdoing.

The 29-page complaint, obtained by Rewire, details Gonidakis’ association with anti-choice groups and includes a copy of the email he sent to Theis.

Common Cause Ohio was the only group that co-signed the letter that is decidedly not pro-choice. A policy analyst from the nonpartisan organization told the Columbus Dispatch that Common Cause was not for or against abortion, but had signed the letter because a clear conflict of interest exists on the state’s medical board.

Commentary Contraception

Hillary Clinton Played a Critical Role in Making Emergency Contraception More Accessible

Susan Wood

Today, women are able to access emergency contraception, a safe, second-chance option for preventing unintended pregnancy in a timely manner without a prescription. Clinton helped make this happen, and I can tell the story from having watched it unfold.

In the midst of election-year talk and debates about political controversies, we often forget examples of candidates’ past leadership. But we must not overlook the ways in which Hillary Clinton demonstrated her commitment to women’s health before she became the Democratic presidential nominee. In early 2008, I wrote the following article for Rewirewhich has been lightly edited—from my perspective as a former official at the U.S. Food and Drug Administration (FDA) about the critical role that Clinton, then a senator, had played in making the emergency contraception method Plan B available over the counter. She demanded that reproductive health benefits and the best available science drive decisions at the FDA, not politics. She challenged the Bush administration and pushed the Democratic-controlled Senate to protect the FDA’s decision making from political interference in order to help women get access to EC.

Since that time, Plan B and other emergency contraception pills have become fully over the counter with no age or ID requirements. Despite all the controversy, women at risk of unintended pregnancy finally can get timely access to another method of contraception if they need it—such as in cases of condom failure or sexual assault. By 2010, according to National Center for Health Statistics data, 11 percent of all sexually experienced women ages 15 to 44 had ever used EC, compared with only 4 percent in 2002. Indeed, nearly one-quarter of all women ages 20 to 24 had used emergency contraception by 2010.

As I stated in 2008, “All those who benefited from this decision should know it may not have happened were it not for Hillary Clinton.”

Now, there are new emergency contraceptive pills (Ella) available by prescription, women have access to insurance coverage of contraception without cost-sharing, and there is progress in making some regular contraceptive pills available over the counter, without prescription. Yet extreme calls for defunding Planned Parenthood, the costs and lack of coverage of over-the-counter EC, and refusals by some pharmacies to stock emergency contraception clearly demonstrate that politicization of science and limits to our access to contraception remain a serious problem.

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Today, women are able to access emergency contraception, a safe, second chance option for preventing unintended pregnancy in a timely manner without a prescription. Sen. Hillary Clinton (D-NY) helped make this happen, and I can tell the story from having watched it unfold.

Although stories about reproductive health and politicization of science have made headlines recently, stories of how these problems are solved are less often told. On August 31, 2005 I resigned my position as assistant commissioner for women’s health at the Food and Drug Administration (FDA) because the agency was not allowed to make its decisions based on the science or in the best interests of the public’s health. While my resignation was widely covered by the media, it would have been a hollow gesture were there not leaders in Congress who stepped in and demanded more accountability from the FDA.

I have been working to improve health care for women and families in the United States for nearly 20 years. In 2000, I became the director of women’s health for the FDA. I was rather quietly doing my job when the debate began in 2003 over whether or not emergency contraception should be provided over the counter (OTC). As a scientist, I knew the facts showed that this medication, which can be used after a rape or other emergency situations, prevents an unwanted pregnancy. It does not cause an abortion, but can help prevent the need for one. But it only works if used within 72 hours, and sooner is even better. Since it is completely safe, and many women find it impossible to get a doctor’s appointment within two to three days, making emergency contraception available to women without a prescription was simply the right thing to do. As an FDA employee, I knew it should have been a routine approval within the agency.

Plan B emergency contraception is just like birth control pills—it is not the “abortion pill,” RU-486, and most people in the United States don’t think access to safe and effective contraception is controversial. Sadly, in Congress and in the White House, there are many people who do oppose birth control. And although this may surprise you, this false “controversy” not only has affected emergency contraception, but also caused the recent dramatic increase in the cost of birth control pills on college campuses, and limited family planning services across the country.  The reality is that having more options for contraception helps each of us make our own decisions in planning our families and preventing unwanted pregnancies. This is something we can all agree on.

Meanwhile, inside the walls of the FDA in 2003 and 2004, the Bush administration continued to throw roadblocks at efforts to approve emergency contraception over the counter. When this struggle became public, I was struck by the leadership that Hillary Clinton displayed. She used the tools of a U.S. senator and fought ardently to preserve the FDA’s independent scientific decision-making authority. Many other senators and congressmen agreed, but she was the one who took the lead, saying she simply wanted the FDA to be able to make decisions based on its public health mission and on the medical evidence.

When it became clear that FDA scientists would continue to be overruled for non-scientific reasons, I resigned in protest in late 2005. I was interviewed by news media for months and traveled around the country hoping that many would stand up and demand that FDA do its job properly. But, although it can help, all the media in the world can’t make Congress or a president do the right thing.

Sen. Clinton made the difference. The FDA suddenly announced it would approve emergency contraception for use without a prescription for women ages 18 and older—one day before FDA officials were to face a determined Sen. Clinton and her colleague Sen. Murray (D-WA) at a Senate hearing in 2006. No one was more surprised than I was. All those who benefited from this decision should know it may not have happened were it not for Hillary Clinton.

Sometimes these success stories get lost in the “horse-race stories” about political campaigns and the exposes of taxpayer-funded bridges to nowhere, and who said what to whom. This story of emergency contraception at the FDA is just one story of many. Sen. Clinton saw a problem that affected people’s lives. She then stood up to the challenge and worked to solve it.

The challenges we face in health care, our economy, global climate change, and issues of war and peace, need to be tackled with experience, skills and the commitment to using the best available science and evidence to make the best possible policy.  This will benefit us all.

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