In Texas, a bill that would eliminate "wrongful birth" as a cause of action in malpractice suits is making headlines. The debate over the bill is bringing up important questions about legislative interference in medical practice, bodily autonomy for pregnant patients, and reproductive rights — but one issue that's not coming up in conversation is the disability angle. It should be impossible to talk about wrongful birth suits without discussing disability rights, and yet, people are doing a pretty good job at it.
Currently, if a Texas doctor withholds information or fails to diagnose a congenital impairment in a fetus, parents have a legal cause of action, and may sue for damages. This creates a natural incentive for doctors to be open with patients. This new bill — which the Senate State Affairs Committee unanimously approved on Monday — states that parents may no longer sue over such withheld information. The lawmakers behind the bill claim that this is necessary to protect the "unborn;" the bill essentially argues that parents who receive a fetal diagnosis of disability will automatically turn to abortion.
Specifically, the bill says:
Critics argue, accurately, that this bill will allow and perhaps even encourage doctors to lie to their patients, depriving them of critically necessary information about a developing fetus. If a self-righteous doctor wants to impose conservative values on a patient, with this bill, it will be easy to do so without legal consequences.
There are layers and layers of problems with this bill — and some of the rhetoric surrounding it — that need to be disentangled.
The History Of Using Disabled People As Political Pawns
The right is extremely fond of using disabled people for its own political aims, without actually attending to the concerns of the disability community. This is especially striking in the realm of conversations about reproductive justice. The right values disabled life so little that it assumes parents facing a fetal diagnosis would automatically seek termination, and thus, organizations like Americans United for Life push hard for legislation designed to prevent abortion for disability. The Guttmacher Institute has found that while some patients do opt for abortion after a prenatal diagnosis, it's often rooted in concern about the ability to provide the level of care needed, not convenience or distaste.
The right is extremely fond of using disabled people for its own political aims, without actually attending to the concerns of the disability community.
Conservatives often like to suggest that this shows they really care about the disability community, unlike those abortion-supporting leftists. But even as they position fetuses as people and claim that they're precious, as soon as those fetuses leave the uterus, the right is there to slash funding and supports for disabled Americans.
That includes Medicaid services, a vital lifeline for many disabled people, along with health care reforms that protect the disability community. Similarly, the right wants to push disabled people out of public schools, rejects the notion that a public safety net helps support everyone, and believes that disabled people should be discriminated against in housing, employment, and public accommodations.
Fetal Diagnosis Does Much More For Expecting Parents Than Its Opponents Claim
Diagnostic tools have radically improved in the past few decades, opening up tremendous opportunities for pregnant patients. Doctors are more likely to be able to diagnose patients much earlier and more accurately, which opens up more choices. For some parents, that does include termination, for a variety of reasons.
For others, it creates an opportunity to think about that child's future and plan accordingly. A fetal diagnosis can complicate a pregnancy and may affect decision like whether to labor naturally or receive a c-section, to give birth at home or in a hospital setting. It may also raise red flags that require extra caution in pregnancy. Knowing this information allows parents to have a much healthier and more successful pregnancy.
It also allows parents to think ahead, to what happens after birth. Raising disabled children can be extremely expensive, depending on the nature of their impairments. Some may need full-time aides to help them with tasks of daily living. They may require expensive medical equipment or medications. They may need occupational or physical therapy, tutoring, and other interventions.
These things take time to organize, and they take money. A parent who receives a prenatal diagnosis has plenty of time to think about how to proceed, and to prepare emotionally, financially, and physically for the birth of a disabled child. A parent who does not receive a prenatal diagnosis gets a shocker in the delivery room, and is plunged headlong into a confusing, terrifying, stressful series of events.
Smart, compassionate, informed members of the medical profession don't like having to tell patients that a fetus appears to show signs of a congenital impairment. But they do, because it's the right thing to do, and because they can provide counseling. That includes referrals to local advocacy and support groups, offers to connect parents with adults who share the disability in question so they can talk about their experiences, and a frank conversation about the child's prospects and medical needs. It also includes supporting parents through whatever their ultimate choice is, regardless of personal opinions.
Wrongful Birth Suits Can Play An Important Role In Helping Parents Afford To Care For A Disabled Child
As a member of the disability community, and an outspoken advocate for disability rights and justice, I think I surprise people when I say that I am not opposed to wrongful birth suits. The very idea sounds dehumanizing and wrong, right? The notion that a disabled child shouldn't have been born, and that the obstetrician should be held accountable for this dreadful mistake, seems to suggest that being disabled is wrong, and a bad thing.
The fact of the matter is, though, that raising a disabled child is extremely expensive, and it's taking place in the context of a society that does not believe in supporting disabled people. If a disabled child were born into a world that didn't discriminate, that valued inclusion, that thought all life had inherent worth, such suits wouldn't be necessary. But that's not the case, and that's why they are.
If a physician knows that a fetus has signs of a congenital impairment, or commits fundamental errors during labor and delivery, that physician should be held liable for failing to tell the parents, and depriving them of an opportunity to prepare and take action. A law that incentivizes lying hurts patients, but it really hurts disabled children, because when their arrival is a surprise, they're less likely to get the supports they need.
Being lied to in order to prevent you from making an informed choice should be considered a cause of action. It deprives parents of months of needed consideration and preparation time that could ensure a better outcome for the child. If the real goal of Texas legislators is a culture of life, and one in which all children are valued, they should be encouraging care providers to be frank and open with patients.
And they should also be providing extensive funding and supports to government agencies that work with disabled people of all ages. They should be ensuring that when disabled children are born, they enter a system where they and their parents never need to worry about expenses and aren't forced to make horrific choices like surrendering children to the state because parents can no longer care for them, putting them in institutions with conditions described to NPR's Morning Edition as "worse than Fight Club."
As we discuss why this bill is so terrible, and what it means, it's critical to consider the disability element here — for this isn't just about physicians lying to pregnant patients. It's physicians failing to exercise a duty of care when considering the futures of the fetuses they're supposed to hold so sacred.