A Brave Response To North Dakota's New Abortion Law
04/03/2013 - 12:41
Steven Eidelman

I am a professional in the field of services and supports for people with disabilities.  As a lifelong disability advocate, and someone who knows a lot of wonderful people with Down syndrome, I am concerned, as are many advocates I know, about early, noninvasive prenatal testing that is likely to result in more abortions of fetuses with Down syndrome. 

One such test is on the market and in use; others are in development. A new North Dakota law prohibits abortion in the case of Down syndrome or other fetal abnormalities. As a lifelong pro-choice advocate, I abhor what North Dakota and other states are doing: foisting their religious beliefs on others. 

I support a group that is working to provide families with scientifically accurate information about Down syndrome, coming out of legislation by Senators Kennedy and Brownback. See http://lettercase.org/get-the-booklet/ for more information. It operates under the premise that if you give families accurate information, they will make the decision that is best for their family.

There is but one slight reference to “termination” in a book otherwise filled with great photographs and the best information available. The booklet, “Understanding a Down Syndrome Diagnosis” provides accurate information on everything from medical issues to educational opportunities for children with Down syndrome.

The Down syndrome community has been torn apart, and great damage has been done to people I care about, on this issue.  Anytime you mention abortion, emotions, and rhetoric, run high.

I have sat with families more times than I can count when they are making this decision vis-a-vis Down syndrome after a prenatal diagnosis. When I talk to these families, I tell them the truth as I know it, and urge them to speak with families who are raising children with Down syndrome. I tell them about the good things about people who have Down syndrome and the struggles they will face, in part due to their child’s syndrome and in part due to the challenges they will face with school systems and ignorant people, both professionals and the lay public.

But I do not want anti-abortion activists to hijack the conversation around Down syndrome.

The "chromosome" that makes people draft laws that rob women usually also makes them want to lower taxes and cut budgets. North Dakota enjoys significant budget surpluses, so it is somewhat of an exception, but efforts are underway even there to cut programs for vulnerable people.

I worked for a governor, Robert P. Casey, who was ardently pro-life. But his definition of pro-life was not just anti-abortion, but lifelong support for families. In the middle of a recession in the late 1980’s he signed legislation making early intervention for children with disabilities an entitlement: one of the first states in the nation to do so. The people behind the North Dakota issue, and abortion restrictions are, so far as I can determine, not like that.

All people with disabilities have value, to their families, to their communities and to their nations. Let’s not let the abortion debate distract us from the efforts to improve the lives of all people with disabilities and their families.

editor@jewishweek.org

Comments

This is how Tay Sachs is prevented in the Orthodox Jewish Community: A couple of Ashkenazic descent may be vulnerable to transmit genetic diseases to their offspring. Therefore it is recommended that they undergo a carrier screening for the various genetic diseases. Dor Yeshorim is an anonymous Jewish Genetic Disease carrier screening program that primarily serves the Orthodox Community. Participants are not given the results of their screening; instead, they receive an identification number. The screening is offered at a heavily subsidized rate. When a couple is considering marriage, both partners submit their identification numbers and are informed whether they are compatible or not. A couple is only considered incompatible if they are both carriers of the same disease.

Thank you for this thoughtful commentary! I absolutely agree that we must protect women's reproductive rights and that the best policy is to make a community into which people are happy to bring their children. We need to put our energy into making the world a better place for people with Down syndrome.

Presumably you think "a decision that is best for their family" could include abortion since you seem concerned that abortion shouldn't be prohibited if done solely on the grounds that the child has Down syndrome. I have read several stories from parents whose babies were not diagnosed till after birth, who love their children but admit that if their baby had been prenatally diagnosed they may well have chosen abortion. They are glad now that this was a choice they did not have. Why are you not equally concerned that people who are pro [the] choice [of abortion] are very defensive if it is suggested antenatal screening and prenatal testing should only be used for life affirming care. Strangely they never get accused of hijacking the "disability rights" conversation by bringing up abortion, but I can assure you they do, because they see any suggestion that abortion be limited for specific reasons as an attack on the availability of abortion.

Yes-I so agree that this is not an abortion debate-this is about discrimination and how the disabled are targetted when other groups are not, for example, I understand the Ashkenazi Jews have achieved a 100% detection rate of babies with Tay Sachs in their community with a corresponding 100% termination rate of "affected" pregnancies.

I would like to know how Mr Eidelman can infer from this legislation that the State of North Dakota is 'foisting its religious beliefs on others'.

Nowhere in the legislation do I see mention of God, worship, heaven, hell, damnation, redemption, the 4 horses of the Apocalypse or anything else that would bring to mind religion or religious practices.

Would someone care to enlighten me?

I am an "anti-abortion activist" (pro-life woman) and both a mother and a grandmother of people who have Down syndrome. Legislation/legal restrictions on/against abortion are not about me foisting my religious belief on you or anyone else. It's a matter of science; it's "me" protecting the life of a very young individual which someone has to kill because they don't want him or her to be born.

How dare you suggest that pro-ife legal activists do not care for women and babies after birth as well. We are not all called to the same methods of assistance, but we all do our part. Some work on behalf of the Gabriel Project or Birthright, which support women in challenging pregnancies. My niche is special education. I've devoted most of my life to maximizing the potential of the lives of my own and other children with Down syndrome, and was party to Speiler vs MDUSD a significant suit brought under the ADA against a school district regarding equal access for students with disabilities.

You can't truly believe in improving the life of someone you are prepared to kill.

Individual decisions around being pregnant is one issue, targeting a vulnerable minority group for birth prevention because of a biological difference is another matter altogether. History has shown how targeting minority groups devalues those groups and reinforces discrimination, so it is disappointing to see such views coming from this community.

I would be interested to know how many of these wonderful people with Down syndrome you have asked about their views on your support for disability selective abortion, or about a resource on screening for Down syndrome that mentions terminations. This is a disability rights issues, so their views should frame how society makes decisions that impact on then.

I am also left wondering why you are concerned with more abortions for Down syndrome. If that is the outcome of the position you defend, where is the problem?

Great article - I totally agree as a father of a child with DS. More information will lead to better choices....no need for prohibition, it never works.

Legislation has often been required to stop discrimination-this is no different. I also understand that the Ashkenazi Jews have achieved a 100% detection rate and corresponding 100% termination of affected pregnancies for babies with Tay Sachs Disease-I find this very disturbing given that the infamous T4 programme began with such devalued persons and grew totally out of control. Lest we forget.

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