By Rose Hoban
Liz Newton was over 30 when she and her husband decided they’d try to have another baby.
They already had Clara Ruth and they wanted her to have a sibling. There was this feeling between them that their family was not yet complete.
Her first pregnancy had been pretty rough. She was sick, depressed and lost weight.
When Liz became pregnant again, she and her husband Zeb faced more challenges.
Around Thanksgiving, they did genetic testing with plans to let family members know the gender of the baby during the holiday.
They got a surprise. The first test showed there might be an anomaly with the fetus, so they kept mum and went ahead with further diagnostic testing.
An ultrasound and a blood test later, the couple knew what this pregnancy would bring: The Newtons’ second baby would have Down syndrome. She also had a heart problem that would require multiple surgeries once she was born.
The couple had a decision to make.
“And at that point, in my mind, I was like, I am not aborting this baby,” she said. “I just need the definite ‘Yes, this is what’s happening.’ And then I can move forward to plan.”
Gone are the days where there’s much doubt about this type of prenatal testing. According to the National Down Syndrome Society, prenatal diagnostic blood tests for Down syndrome “can detect up to 98.6 percent of fetuses with trisomy 21.”
“A ‘positive’ result on the test means that there is a 98.6% chance that the fetus has trisomy 21; a “negative” result on the test means that there is a 99.8% chance that the fetus does not have trisomy 21,” the NDSS website reads.
Newton said the doctors were very respectful, and helpful, as she started picturing the future in her head.
“I ended up actually going and seeking counseling for a little bit to kind of just work through the grief that the baby I was carrying was not going to have the ideal picture of a life that I was envisioning,” she recalled recently.
That baby, Esther Rose, is now three years old, and Newton and her husband don’t regret their choice despite the difficulties.
This week, a bill is moving in the state Senate that would have constrained the choices that families such as the Newtons would have. House BIll 453 has passed the House and flew through Senate hearings last week on its way to being debated on the Senate floor. Supporters of the bill frame their arguments for it by stating it’s a disability rights issue.
During hearings on the bill, some supporters have even brought their children with Down syndrome to the state legislature to testify about their lives.
Liz and Zeb Newton, along with some other parents of children with Down syndrome, have opposed the bill.
“I would love every baby, ideally, to be born, every family to have what they need to support that child,” Newton said. “I know though, I don’t live in an ideal world. And so I don’t want to force that stamp of the ideal when it’s not realistic.”
But HB 453, the Human Life Nondiscrimination Act/ No Eugenics bill, would prohibit a physician from performing an abortion if the parents express that they’re seeking the procedure because of the “presence or presumed presence of Down syndrome.”
As polarizing a topic as abortion can be for the general public, it roils the disability community even more. Many of the families know what it’s like to face the difficult decisions leading up to continuing a pregnancy, even if a child’s health could be at risk.
Such legislation would make those decisions more fraught and tenuous for them. Some argue the measures would protect them, or their children. Others counter the bills takes aim at the core issue of the disability rights movement, the right to make decisions about one’s body.
“Nothing about us without us“
Philosophically, selective abortion is challenging for people who are involved in disability rights.
In places such as Denmark and Iceland where prenatal testing is available to every woman, the rates of children with Down syndrome have plummeted. In the U.S. about 6,000 children with the disability are born annually.
“The ethics implications are complicated,” said Corye Dunn, Director of Public Policy for Disability Rights North Carolina, who explained that Down syndrome is one of the first genetic conditions that could be detected by prenatal testing, and it’s relatively simple to diagnose accurately.
For generations, people with disabilities were seen not as individuals, but as a problem to be solved. As recently as the 1970s, they were shunned or hidden away in institutions. The lives, experiences and bodies of people with disabilities were managed by doctors and other professionals, explained Marsha Saxton, an ethicist from the University of California who focuses on disability issues.
“My mom was a super advocate, and she was fantastic,” said Saxton, an older woman who was born with spina bifida. ”But the impact of those medicalized decisions were and are very difficult for moms and dads and parents because the medical profession is so powerful in relation to disability-related decision-making and empowerment of disabled people.”
That power dynamic could make it challenging for people with disabilities and their families to forge their own paths. Accounts abound of families pushed into institutionalizing their children, or denying them schooling and opportunities for enrichment.
The disability rights movement that began in the 60s sought to upend that power dynamic. People with disabilities started demanding more autonomy over their bodies, and asked for their lives and their conditions to be described less like a diagnosis, less like something to be shunned. They argued that they were more than simply their disabilities, but whole people with lives that transcended simply the fact that they looked different, or couldn’t walk. They demanded that decision-making be moved from medical professionals and parents — no matter how well meaning — to the disabled individuals themselves.
The rallying cry for people with disabilities became: “Nothing about us without us.”
“Where that comes from is that decisions have classically, traditionally, for millennia, decisions made about disabled people, by doctors, social workers, politicians, family members. That infantilizing [of] disabled adults is challenged now in everything we’re doing and that slogan turns up everywhere around the world,” Saxton said. “Medical providers have made very bad decisions about us and our bodies.”
“Whether it’s forced sterilization, experimentation, eugenics, or treatments to keep us small and manageable, removing our right to control our bodies, our personhood, has been common practice by the ‘well-meaning’ nondisabled public for centuries,” disability advocate Rebecca Cokley told CNN.
Nonetheless, 50 years into the disability rights movement, it can still be a challenge for people with disabilities to control their bodies, explained Cokley, who was born with dwarfism.
For instance, in her essay, Cokley told of how during the cesarean birth of her second child, her anesthesiologist, ignoring her, suggested to the obstetrician delivering the baby that Cokley be sterilized.
Lift up the many voices
As House Bill 453 made its way through legislative debate, Disability Rights North Carolina is the only one of the state’s disability organizations that has weighed in, both in writing and during committee hearings.
“We would never think of using limits on someone’s bodily autonomy to protect our rights,” said Disability Rights’ Dunn. “We didn’t ask for this.”
NC Health News reached out to a number of organizations. Most did not respond to requests for comment. One organizational leader, John Nash from The Arc of North Carolina, did.
“We have given this a lot of thought and right now we are remaining neutral,” Nash, executive director, wrote in an email. “Given our statewide constituency, there is enough division on the issue to remain neutral for the time being rather than diving into an internal debate that would impact our non-partisan appeal.”
Disability organizations around the country have wrestled with similar abortion laws in other states, often taking nuanced positions that might anger their constituents.
“The National Down Syndrome Congress (NDSC) has long held that abortion for the sole reason that a fetus has Down syndrome borders on eugenics,” the organization replied in a statement posted to its website in response to a similar bill passed in Ohio in 2017.
“However, the organization believes the Ohio legislation will… inhibit honest, open communication between a patient and her doctor. We believe a better approach is to require healthcare providers to provide their patients with accurate, up-to-date information about the realities of having Down syndrome in contemporary America; and, to promote full, meaningful inclusion of all people – with and without disabilities – in every aspect of society.”
Many in the disability rights community want advocates to become more vocal, not shy away from tough and potentially divisive topics.
“Believing in bodily autonomy means you have to support the idea that other people — your friends, your peers, your siblings — may choose to abort a pregnancy because their child could be like you,” Cokley, hired recently by the Ford Foundation to develop a disability rights program strategy, wrote in an essay included in “Disability Visibility.” “But that’s why it’s a conversation we have to have, because if we don’t, decisions about us and our futures get made by others, without us.”
Imperfect information
The National Down Syndrome Society has also waded into the deep end of the debate with statements on its website in support of prenatal screening to allow “for advanced awareness, adoption or pregnancy termination considerations.
“Whether or not to undergo a prenatal screening or diagnostic test is a personal decision, and expectant parents must make the choice that is best for them.”
As in so many debates about abortion, the conflict comes down to a collision of rights to liberty between the fetus and the woman.
“We have really a lot of information about embryos, about future persons,” said Rosemarie Garland Thomson, a medical ethicist from Emory University who thinks about disability issues. She also was born with a disability. “And we have a lot of information about specific embryos and fetuses now. But one of the problems with that information is that it’s all abstract.”
That abstraction is a problem because a diagnosis doesn’t tell potential parents about the future life of their fetus, leaving it to parents’ imaginations to fill in the gaps.
Garland Thomson explained that in terms of ethics, no person should be killed on the basis of someone else determining that their life is not worth living, which is essentially what happens during selective abortion procedures.
But it’s done based on just a diagnosis, not on solid information about a lived life.
At the same time, “we have this kind of conflict between that principle, and the principle that everyone has the right to control over their own body, which was like one of the arguments that was used in the abolition movement. That’s what was wrong with slavery.”
What comes next?
In some ways, to have an abortion without any information about the fetus would be less complicated ethically, Garland Thomson argued.
“This is what this law responds to,” she said. “I’m not saying that this law should be in place at all, but the logic of the law makes a lot of sense because we didn’t have a way [before] to know enough about the future person to be able to have a discriminatory practice put in place.”
In her view, it’d be easier to stop testing, “for any conditions, except very, very, carefully identified and adjudicated conditions that really are terrible, that really are incompatible with life.”
Garland Thomson talked about how she was born with a disability before there was any prenatal screening at all.
“My parents… they had no idea that I could have had the life that I had,” said Garland Thomson, who has risen to the top of her field “That’s kind of the limitation of human imagination and knowledge. So I think we’ve really made a huge mistake when we are evaluating people to be born based on, you know, somebody else’s preferences.”
But that genie is out of the bottle already, and more testing will inevitably come.
Right now, medical scientists know a lot about Down syndrome. They know, for example, that people with Down syndrome often have a number of health issues, like Newton’s daughter and her heart problems. They also know that people with Down syndrome live longer lives than in the past. Down syndrome is visible and it’s easy to make a prenatal diagnosis. And even though there’s a range of impairment, the disorder has a relatively predictable life course.
Even still, there’s a lot of uncertainty.
For Liz Newton, her desire to know about her daughter’s diagnosis while she was still a fetus gave her the opportunity to plan for both of their futures. Liz and her husband had to pivot, to make countless decisions about schooling, employment, money, where to live, what house to buy and other fundamental issues in order to make their lives tenable.
“It’s not easy. It’s not always pretty, it’s not always these sweet smiling faces. It’s all over the place,” she said. “There’s a real side of parenting a child with special needs that is scary, it is ugly.”
A different mother knowing that same information may not want to move forward. SB 453 would close that door.
Disability Rights’ Dunn said that there need to be more nuanced conversations about what to do with all of this prenatal testing information. What about people with autism, or with debilitating disabilities that require lifelong support, or cause intractable pain, she asked.
“If you could diagnose all kinds of other conditions prenatally would you? Because we may be able to really soon,” she said. “The ethics implications are really complicated.”
And a big problem is that services are lacking, Dunn said. For instance, in North Carolina, there are 15,000 people on a decade-long waiting list for enhanced community support services.
Meanwhile, families struggle. The Newtons limit their income so their children can qualify for Medicaid, and so Liz and Zeb qualify for subsidized insurance on the Affordable Care Act exchange. They can’t save for their older daughter without jeopardizing their finances. Appliance and car breakdowns can be nerve-wracking.
“If legislators are interested in working to advance the rights of people with disabilities, and to enhance the lives of North Carolinians with disabilities, we think that they could go a long way to making prenatal screening, or diagnosis, less scary,” Dunn said.
“Making sure that there are services that are guaranteed to support families… making sure that a child born with a disability is going to be able to be included in their community and receive the services and support they need to thrive would go an awfully long way to making that diagnosis less scary.”
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