Indiana bill to ban Down syndrome abortions

IndianaWelcomeA bill has been introduced in Indiana to ban selective abortions for Down syndrome. It has already been the subject of some commentary. Here’s mine. 

What the bill says:

The relevant language of the bill, Senate Bill 334, states:

(K) That Indiana does not allow a fetus to be aborted solely because of the fetus’s sex or diagnosis or potential diagnosis of the fetus having Down syndrome or any other disability.

Actually, this language is not new. It was passed into law in North Dakota in 2013, which generated a series of posts at that time. The Indiana law has prompted critiques by writers and fellow parents that I respect.

Wedge issue for disability and reproductive rights

David Perry is is a prolific blogger, writer, and a professor. He is also a fellow father, whose son has Down syndrome. Friday, he weighed in on the Indiana bill, criticizing it for placing a wedge between those who care about disability and reproductive rights. His critique is lengthy and I can’t do it justice in just a few lines. I commend it to you for reading in full.

One of Perry’s criticisms is that those with disabilities, specifically Down syndrome, are being used by those with a larger pro-life agenda as a means for incrementally restricting a woman’s right to abort. And, that is exactly what is happening and for that, the bill has an unseemly feel to it, as anytime the disabled are used for an ulterior purpose should.

Which leads a bit into the second commentary on the bill.

The need to make the world more welcoming of Down syndrome

Meriah Nichols is an equally prolific blogger who also is a connector of fellow bloggers who write about Down syndrome; her daughter has Down syndrome. Nichols addressed another aspect of the Indiana law, on the challenge posed to mothers knowing prenatally their child has Down syndrome. Writing as someone who herself has a disability (brain injury and deaf) who had a prenatal result for Down syndrome, Nichols shares her insight:

As a person with a disability, I find the idea of aborting a baby because of their disability distressing, but as a mother it is comprehensible.

Our country is not kind to people with disabilities.

Access is far from equal. The disabled are on the lowest rungs of the social hierarchy. * * * Children with disabilities, both visible and not, grow up with substandard educations. Added to that, they are most at risk to be physically, sexually, mentally and emotionally abused.

What mother, not knowing about or having access to communities of proud, educated, successful people with disabilities, would want her child to be subjected to what most people with disabilities in the United States are?

These two critiques prompted the following three points from me on the Indiana bill.

1. When being pro-life isn’t enough

Nichols goes on to argue that the Indiana bill fails to address the fundamental challenge which leads women to abort after a prenatal diagnosis: the lack of support.

While Nichols does not structure her argument in this way, it is a common argument against pro-life advocates: they’re for the life of the children up until birth, but then do not equally advocate for full funding of the support services needed for the lifespan of the child. It was one made by another fellow parent and blogger, Alison Piepmeier, in response to the North Dakota law.

It’s even one that I’ve made, but more in the style of Nichols. If advocates really wanted to help women facing a prenatal diagnosis, banning the option of abortion won’t stop them from aborting. Studies and experience shows all that an abortion ban does is extend the travel time to where the mother can obtain an abortion–indeed, as the “Crossroads of America,” Indiana’s tourism motto, most Indiana mothers are within a two hour drive to a border city in another state with an abortion clinic. Instead, if those concerned about women facing the decision to selectively abort wish to help her make the decision to continue, then efforts should be taken to make the world more welcoming for raising a child with Down syndrome.

Nichols and Piepmeier and I have made this argument.

But then, I had a conversation with Dr. Brian Skotko in 2013 after he returned from a recent speaking engagement in Sweden.

Dr. Skotko explained that in Sweden there are not the scale or type of Down syndrome support organizations as in the United States. This is because the government provides a social safety net for all individuals to live at a pretty good quality of life, including those with Down syndrome. So, there is not as much of a need for charitable support organizations. Women finding out prenatally that they are expecting a child who may require additional care even into adulthood can rest assured knowing that their child will receive that level of support.

And, the mothers still choose to abort.

If, then, there is a society created where the needed support is established and yet women still will choose to terminate, then that refutes the counterarguments of mine, Nichols, and Piepmeier. If those measures don’t result in women choosing to continue their pregnancy after a prenatal test result, what measures do?

2. The merits of the Indiana bill

Turning to Perry’s commentary: while the methods and motives may be critiqued, what about the actual merits of the bill itself?

Similar to the North Dakota law, two of the three categories banned from selective abortions are consistent with professional medical guidelines. The American College of Obstetricians & Gynecologists Ethics Committee said, in the same year that it recommended offering prenatal testing for Down syndrome to all women, that using prenatal testing to allow for sex selective abortions was unethical. And, all professional statements, and the most recent statement on cell free DNA, emphasizes that a decision to terminate should never be based just on a screening result.

So, two out of the three subjects to be banned for selective abortion–sex or the possibility of disability–are already supposed to be banned from professional practice.

The remaining issue is whether Down syndrome should be included in that list.

Regardless of where you stand personally on that issue, isn’t that exactly what should be debated in a democracy by its public officials? The Indiana bill allows for this public debate, which has been too long in coming as prenatal testing has continued to evolve.

Plus, where selective abortion is legally banned, the termination rate is substantially lower: from a high in certain areas of 90% (or greater) where selective abortion is allowed, to being around 50% or even lower. So, an argument can be made that the Indiana bill is precisely what is needed if diminishing the number of selective abortions that occur is what is desired.

Except …

3. Will Indiana enforce the law?

Here’s the more practical challenge/critique of the Indiana bill: will it simply be a public policy statement, but not actually enforced if enacted into law.

Again, under question two, reasonable people can debate whether selective abortion for disability should be banned. But for proponents of the bill, are they also going to continue to advocate and hold Indiana’s government accountable to actually enforce the law if it is enacted?

I highly doubt it.

Instead, it will be simply another superficial measure, causing a lot of commentary, chest-puffing, and lines used in political ads. But, without enforcement, there will be no impact made on what actually happens once a prenatal diagnosis is delivered.

Where selective abortion has been banned, it has reduced discrimination against the targeted minority. In South Korea and India, gendercide–selective abortion against baby girls–has been rampant. So much so that it has unnaturally changed the ratio of boys to girls to a societally-dangerous level. In response, not only has sex selective abortions been banned, but, critically, those bans have been enforced by running sting operations.

Pregnant women go into doctors offices saying they are seeking an abortion because they are having a baby girl and if the doctor will perform the procedure, then the state sanctions them.

But, I doubt this will actually happen in my neighboring state to the north.

And, if Indiana won’t enforce the law, then the law is pointless and instead is simply using those with Down syndrome for the pro-life agenda to have a bullet point in a fundraising letter.

Wrap-up

Nichols is correct that social services should be fully funded and implemented to make the world more welcoming to those with Down syndrome. If this were done, fewer women would make a decision to terminate out of a fear of lack of support for their child. But those efforts are not mutually exclusive with a policy measure stating that it is discriminatory to selectively abort for Down syndrome–indeed ACOG says just this when prenatal testing is used to abort for sex. Where laws ban selective abortion, it does reduce the number of those abortions, but only if the laws are enforced. If the Indiana law is not backed with enforcement measures, then Perry’s critique on using Down syndrome is spot-on: Down syndrome will then just be used by those with a larger agenda but have no real impact on lives with Down syndrome.

Comments

  1. This is a good addition to the discussion around SB334.

    The question of disability rights in relation to selective abortion for Down syndrome is becoming settled in the international arena. The UN committee that deals with the Convention on the Rights of People with Disabilities (CRPD) has already made statements that such practices offend disability rights and the CRPD. The committee has ruled that laws that provide for abortion on the grounds of disability breach the CRPD if they provide a lower level of legal protection before birth than other solely due to a prenatal diagnosis of a condition such as Down syndrome. Targeted selective abortion for Down syndrome sits outside that understanding.

    In 2013 a UK parliamentary inquiry on abortion and disability also determined that disability selective abortion breaches disability rights and has recommended the appeal of disability as a grounds for abortion in the UK.

    More recently in New Zealand, the Human Rights Commission has also acknowledged that disability selective abortion breaches disability rights and has launched a two-year programme to address the issue and report back to the UN. These outcomes may well be rolled out internationally through countries party to the CRPD, which includes the US.

    Some have said that SB334 is part of some agenda to limit abortion rights. SB334 does not interfere with a women’s choice if she finds she is pregnant and doesn’t want to be pregnant. The proposed law deals with a situation where a woman wants to be pregnant and then wishes to choose to not have a particular type of child due to a prenatal diagnosis of a condition of Down syndrome. The principle of non-discrimination requires that an unborn child should be free to be born without discrimination on the basis of their disability (or gender for that matter). The emergent disability rights view is that prenatal prejudice against conditions such as Down syndrome are impermissible under the basic principles of human rights and international law.

    Abortion politics and the pro-choice v pro-life debate shouldn’t be allowed to get in the way of the proposed law. It needs to be recognised that abortion politics deals with questions around the right to life. SB334 deals with disability rights. Whereas people will differ on the question of the right to life and abortion, it also needs to be acknowledged that targeted selective abortion not only impacts on the unborn child and the parents, but it impacts on the survivors: those living with Down syndrome. It reinforces a cycle of prejudice against them: because it says, “your life is different and warrants detection for selective abortion” in a way that isn’t applied to those without the condition. SB334 is a correct approach in term of disability rights and is underpinned by the precedents of the UN, the UK parliamentary inquiry and the work of the Human Rights Commission in NZ.

    SB334 is not an incremental law on abortion rights. It is a stand-alone disability rights law. Any other laws that impact on abortion would need to be passed through democratic state law, so there is no Trojan horse or slippery slope. The proposal will stand on it’s own merit under democratic process. As you rightly point out, this is exactly the debate publicly elected officials should be having.

    On the issue of social support services, I agree that these should be funded and implemented. But, as you rightly point out, that does not equate too less selective abortions for Down syndrome. In addition to Sweden, you can add most western European countries, the UK, Australia and NZ to the list of countries with strong life-time social support services for those with Down syndrome, that have termination rates for Down syndrome between 65% to 95% of all pregnancies (both those with a prenatal diagnosis, and those without). The evidence is that strong social support services do not result in lower termination rates. As you point out, where selective termination for Down syndrome is illegal, termination rates are way lower.

    The question of enforcement is an unusual one. Normally a law is considered on its ethical merits and enforcement is more about accountability and political will. There is no evidence to suggest that the law won’t be enforced. Supporters within the local Down syndrome community could be an effective mechanism to address your concerns should the need arise.

    It will be interesting watching the discussion as the bill moves forward.

  2. The issue of providing support to women who abort due to fear of lack of support once their baby with Down syndrome is born is a good point. It is precisely why the Southwest Indiana Right to Life organization is one of our quickest sponsors to respond to our annual request for sponsorships of the SMILE on Down Syndrome organization that was founded in 2001. SMILE was founded in order to be a support system (and Support is the first word of the SMILE acronym) for women who initially received a pre-natal diagnosis of Down syndrome in order to give them accurate information and hope for the future.

    • And, if I wasn’t clear in my language, Nina, I was repeating the argument made by those who criticize pro-life efforts. I was not saying that in fact pro-life advocates universally oppose support services post-birth. However, the critics can point to elected officials who label themselves pro-life and then make budgetary cuts to needed support services.

Trackbacks

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