Letter to ACLU on Wrongful Birth and Life Statements

Scales of Justice Statue

Anthony Romero
Executive Director
American Civil Liberties Union
125 Broad Street
18th Floor
New York, NY 10004

Susan Herman
American Civil Liberties Union
Centennial Professor of Law
Brooklyn Law School
250 Joralemon Street
Brooklyn, NY 11201

Dear Professor Herman and Mr. Romero:

We are writing as members of the disability community to express disappointment with your action alert this past March defending wrongful birth and wrongful life lawsuits. As civil rights advocates, we are grateful for the ACLU’s tireless work. However, we strongly feel that your defense of these suits fails to address issues that reach beyond reproductive choice and that profoundly affect people with disabilities. We would like to schedule a meeting with you to begin a dialogue between our organizations. People with disabilities see these lawsuits as involving distinct issues unrelated to abortion, namely the harm to society when courts make decisions about the value of the lives of individuals with disabilities who have already been born. We are disappointed that an organization committed to and with a long history of protecting civil liberties and human rights, particularly the rights of traditionally marginalized or underrepresented communities, would support a policy that dehumanizes people with disabilities and devalues their lives.

Wrongful birth and wrongful life lawsuits have as their basis the assumption that life with a disability is not worth living, which goes against the principles of the disability rights movement and the Americans with Disabilities Act. These actions require parents to publicly reject their child because of a disability. Only parents who convince the court that their child should never have been born are eligible to win a wrongful birth or wrongful life lawsuit. Similarly, because not every disability will be considered significant enough to win a wrongful birth or life lawsuit, courts are required to make decisions about which types of disabilities are “so bad” that parents should be compensated for having the child.

Moreover, wrongful birth and wrongful life lawsuits lead to far larger awards than the nominal damages from a lawsuit claiming that the harm arising from the misdiagnosis was the loss of the opportunity to prepare to parent the child or give birth to her baby in the medical setting best suited to the delivery and care of a child with a disability. Therefore, the availability of wrongful birth or wrongful life claims can put pressure on parents to publicly reject their child with a disability. Such statements can be damaging to the child, the family, the disability community at large, and to society as it struggles to be respectful and inclusive of all its members.
The ACLU action alert raises the concern that a law rejecting wrongful birth claims will deprive woman of “information that might lead to a decision to end the pregnancy or that might lead the woman and her partner to learn more so they are prepared to be the best parents they can be to their child.” However, wrongful birth cases do not cover both these situations—only the cases where a woman is willing to lament the existence of her child with a disability. A State’s refusal to recognize wrongful birth and wrongful life lawsuits does not impact lawsuits arising out of harm to the mother or child caused by a misdiagnosis, nor does it impede a woman from getting an abortion.

The main focus of the ACLU action alert is the concern that a State’s refusal to recognize wrongful birth lawsuits will allow doctors to lie to their patients. It is worth noting that very few, if any, wrongful birth or wrongful life claims have been based on a doctor’s intentional misrepresentation to a parent. Instead, these claims are usually based on medical mistakes. There
is no evidence that doctors are more or less likely to make such mistakes in the states that recognize wrongful birth lawsuits than in the many states that already do not. In the rare case where a doctor intentionally lies to a parent, that doctor would still be subject to discipline by the State’s Board of Physicians. Depending on the facts of the case, doctors may also be liable for other harms flowing from negligent or intentional failure to provide expectant parents with relevant information.

We are disappointed that, out of a 68-page piece of legislation that affects a broad array of reproductive health issues, the ACLU specifically chose to attack a provision that has little appreciable impact on a woman’s right to information, unless she is willing to publically reject her child with a disability, and has real potential to prevent harm to individuals with disabilities. Progressive disability rights scholars have consistently criticized these causes of action as devaluing the lives of people with disabilities. Most importantly, we are saddened that the ACLU has not acknowledged that the disability community would also be affected by legislation concerning mothers’ rights to sue for failure to diagnose a fetus’s disability. In the words of Wendy Hensel, a scholar who criticized wrongful birth litigation nearly seven years ago, “In the midst of this robust public debate, there is one point of view that has received less attention–that of individuals with disabilities.1”

We strongly encourage you to meet with us for further conversation about the perspective of the disability community on this issue. We look forward to corresponding with you shortly. Please direct your response to Ari Ne’eman of the Autistic Self Advocacy Network at aneeman@autisticadvocacy.org or by phone at 202.596.1056.

Autistic Self Advocacy Network
National Down Syndrome Society
National Down Syndrome Congress
American Association of People with Disabilities
Little People of America
United Spinal Association
National Council on Independent Living
National Disability Rights Network
Not Dead Yet
Center for Self Determination
Institute for Health Quality and Ethics

1 Hensel, Wendy F., “The Disabling Impact of Wrongful Birth and Wrongful Life Actions,” Harvard Civil Rights-Civil Liberties Law Review Vol. 40, p. 141 (2005), available at http://papers.ssrn.com/sol3/papers.cfm?abstract_id=932688.