Letter

Ohio bill advances Down syndrome rights

child-downs-syndrome

The prenatal testing landscape has changed profoundly since Roe vs Wade, it is time the law is changed too. It’s time to advance the rights of those with Down syndrome, to advocate for them, and to hear their voice about their freedom.

Saving Down syndrome welcomes and supports a proposed disability rights law in Ohio addressing prenatal prejudice against our community. House Bill 135 (HB135) would prohibit abortions due to a diagnosis of Down syndrome.

It has led to a bit of on-line drama in the Down syndrome “advocacy” community though, with a number of commentators opposing the ban and endorsing a right to selective abortions for Down syndrome. Ethically, that’s not okay for people with Down syndrome. And, ethically, it’s not okay for women who are under health care for the loving, nurturing and trusted support of their wanted pregnancies.

We need to hear the voice of people with Down syndrome and understand what they think about their lives. Do they support being targeted for abortion? And advocate for them. Because this is about their freedom and nothing else. And we can, and should, at the same time acknowledge that the dignity of a mother’s unborn child does not change with a diagnosis of Down syndrome. The focus on health care and the love and support of that mother and her wanted pregnancy shouldn’t change as a result of a diagnosis either.

As we have stated previously in relation to the proposed ban in Indiana, it would be to the disadvantage of people with Down syndrome if abortion politics and the wider pro-choice v pro-life debate got in the way of the proposed law. It needs to be recognised that abortion politics deals with questions around the right to life. HB135 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 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.

HB135 is the correct approach in terms of disability rights and is underpinned by the precedents of the United Nations (UN), the 2013 UK parliamentary inquiry on abortion and disability, and the current work of the Human Rights Commission in New Zealand.

Selective pregnancy terminations for Down syndrome remain stubbornly high. There is widespread evidence that doctors target Down syndrome in pregnancy and coerce women with otherwise wanted pregnancies towards abortion following a prenatal diagnosis. This is despite all of the excellent information about the good lives of people with Down syndrome that is available to doctors and expectant parents.

HB135 holds the doctor accountable if they perform a Down syndrome selective abortion. They can have their license revoked and and can be sued in a civil suit for damages. This is appropriate; it sends a clear and strong message to doctors that they will be held accountable for the unjust practice of prenatal selection. Equally, HB135 exempts from prosecution the mother, who rightly remains supported in her wanted pregnancy and is protected from prenatal abuse and discrimination.

But some in the Down syndrome community oppose these initiatives. The time has come for these “advocates” to decide who they are advocating for. Are they advocating for those with Down syndrome, or are they advocating for their own ideology? Let’s have a look.

Freelance Journalist David M. Perry is vocal in opposing bans for Down syndrome selective abortions. He complains that the Ohio Bill politicises his son as a wedge issue in this article at CNN. You may note that he actually is politicising the issue (his son has Down syndrome) in supporting legal abortion for Down syndrome and wedges his ideology into a discussion about disability rights. But, who is David M. Perry? It turns out that he is a pro-abortion activist blogging over at RH Reality Check. This is what he has to say about banning abortion for Down syndrome:

Disability activists must make explicit their support for the right of women to choose to terminate a pregnancy based on a prenatal diagnosis of a genetic disability.

That’s right. Perry is demanding that advocates for people with Down syndrome “must” explicitly support a right to abort for Down syndrome. He even thinks it can be the “right thing to do” when writing about abortion for Down syndromesaying, “For some people, abortion may be the right decision.”

This is advocating a pro-choice ideology and wedging it into disability rights; it is not advocating for people with Down syndrome. Which he would know, if he asked them. You see, that’s the rub. Who’s missing from the discussion? Yes, the ones targeted for prenatal selection. We’ve actually discussed it with quite a few of them. We’re yet to meet any who think they deserve to be targeted for prenatal selection. They seem to be happy they were born and like living.

It seems paradoxical for some parents to be OK with society targeting their own children for prenatal selection. Perry doesn’t present one ethical argument in support of Down syndrome selective abortions in those otherwise wanted pregnancies, rather, he just complains about efforts to ban prenatal discrimination and defends his pro-abortion agenda. He’s not the only one.

Keri Wagner-Peck joined the drama and wrote an interesting blog the other day. Like me, she wonders about the voice of people with Down syndrome in this debate:

To leave people with Down syndrome out of this conversation – however anyone of us stands on the issue – is promoting the worse kind of patronising thought. I have no idea how my son will think about abortion but I will be willing to listen and accept whatever he has to say.

That’s a good start. “Nothing about us without us” is the disability mantra after all, although often overlooked. But, like Perry, Wagner-Peck opposes the Ohio Bill and firmly pegs herself in defending legal abortion due to prenatal diagnosis of Down syndrome:

I do not support this kind of legislation – even though our son has Down syndrome. I am pro-choice which means I support whatever reasons a woman chooses for having an abortion.

Whatever reason, yep, that includes Down syndrome. That’s patronising towards people with Down syndrome perhaps? –  She will listen to what her son says when he is older and will accept what he says, but she will defend the right to stop his type being born, whether her son agrees with her or not? It’s all very confusing.

Mark Leach is another who has raised concerns about the Ohio pro Down syndrome bill. Leach is very active in blogging on prenatal testing. He wrote a long blog about issues with HB135 with a far-fetched scenario about a drunk man raping his wife and forcing her to have an abortion following a prenatal diagnosis for Down syndrome just so he can sue a doctor for breaking the Ohio law. It reads more like a Hollywood soap opera than a serious piece of advocacy. That’s not advocating for people with Down syndrome.

We challenge Leach to clearly state that it is unethical to target those with Down syndrome for selective abortion. That’s the pro-Down syndrome position, as a bio-ethicist we expect him to promote that position. As to his “pro-information” argument that he raises frequently, well, we would ask – do people with Down syndrome agree that being targeted for abortion is OK, provided one is informed in doing it? Do people with Down syndrome agree with Leach?

So, here’s our challenge to Perry, Wagner-Peck and Leach. Go and ask people with Down syndrome what they think about their lives and being targeted for abortion. Hear and respect the views of those with Down syndrome who say that their lives have worth. Hear them say, no, we don’t support targeted prenatal selection for being who we are. Go fight for them and support the Ohio Bill as an advocate for people with Down syndrome.

About Saving Down syndrome: We are an international social justice advocacy for people with Down syndrome, providing a balanced perspective on life with Down syndrome and supporting parents with a prenatal diagnosis. We raise awareness around the discriminatory and eugenic nature of the practice of antenatal screening worldwide and wish to ensure that prenatal screening exists only to provide unborn children with Down syndrome and their parents with life-affirming, unbiased care through advocacy, education, support and understanding–worldwide. We have representation in the US (including Ohio), Canada, Germany, France, Scotland, England, Wales and New Zealand.

Editor’s note: This article is a guest submission and  is published with permission.  The piece first appeared here at savingdownsyndrome.org.

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