‘Never just black and white’: End of Roe a health risk for disabled, advocates warn

TARPON SPRINGS — The moment he heard Roe v. Wade was no longer the law of the land, Tarpon Springs resident John Heagney couldn’t help but think of his sister Mary.

Born with a severe intellectual disability, she was an inpatient at G. Pierce Wood state mental hospital in Arcadia around 1990 when a Catholic doctor at the hospital took her off birth control.

The family only learned this when the hospital told them that Mary, then 42, was pregnant.

Mary was on a daily regimen of psychotropic, behavioral and anti-convulsive drugs for her epilepsy, the last of which significantly increased the risk that her baby might be born with significant medical complications or fetal anomalies. It fell to Heagney and his mother to decide whether to terminate the pregnancy.

“It’s a decision that I’m sure no one wants to be faced with,” Heagney said. “It’s never just black and white.”

While pregnancies from rape and incest are often discussed in debates about potential bans on abortions, there has been little discussion about how such bans might affect people with intellectual and physical disabilities who become pregnant.

It’s a population that is at higher risk of serious pregnancy complications, maternal mortality and stillborn births, studies show. At the same time, that population has a higher rate of unplanned pregnancies and less access to contraception, sex education and reproductive health care, said Monika Mitra, an associate professor at Brandeis University and director of the Lurie Institute for Disability Policy.

Women with intellectual and developmental disabilities are four times more likely to die from a pregnancy-related cause than women without disabilities and three times more likely to experience serious pregnancy complications, according to one study that Mitra co-authored.

Forcing disabled people to carry a baby to term could put their health at risk and also increase economic hardship since people with disabilities typically earn less than their able-bodied peers, Mitra said. In a post-Roe America where abortion is expected to be legal in some states and not others, people with disabilities may also struggle to be able to afford to travel for the procedure.

“This is particularly devastating for people who come from marginalized populations — that includes disabled people,” Mitra said.

Higher-risk pregnancies

Births to people with physical and intellectual disabilities are more common than many realize. A 2021 study based on an all-payer inpatient healthcare database included more than 32,000 births to that population in the U.S. between 2004 and 2017.

Many of those were likely births to people with disabilities who were in relationships and wanted to have children. The data does not show how many of those births were either unwanted or unplanned.

Studies conducted in Canada by scientists from the University of Toronto showed higher health risks during pregnancy for people with disabilities. In nearly 4,000 deliveries to Canadian women with developmental disabilities between 2002 and 2012, there were slightly higher rates of preeclampsia, blood clots, significant bleeding and a number of other rare but serious pregnancy complications compared to the general population.

Their newborns were also at higher risk of health issues including infection and breathing difficulties. Infants born to people with disabilities were twice as likely as infants of women without developmental disabilities to die.

Opposition to the availability of abortions has been largely led by religious groups. Even if babies born to those with disabilities have a higher risk of health issues, they deserve a chance at life, said Rev. Len Plazewski, pastor at Christ the King Church in Tampa.

Many times doctors put unnecessary fear into the minds of pregnant people, he said.

“I understand how medicine works, and there are risks and doctors try to do their best and give advice,” he said. “We want to put ourselves in the position of God and decide who’s going to live and who’s going to die, and that is a grave moral error.”

The World Health Organization in 1994 recognized that human rights include reproductive rights and asserted that assistance should be provided to persons with disabilities to exercise those rights.

But there is still resistance to that idea, including from some in the medical community, in part because of a widespread misconception that people with disabilities are not interested in sex and are not capable of caring for a child, said Robyn Powell, a law professor at the University of Oklahoma who conducts research on reproductive justice and parenting rights for people with disabilities.

Powell, who is physically disabled, said she has lost count of the number of times doctors have offered her a hysterectomy because they assumed she should not have children.

She is concerned that a blanket ban on abortion would particularly affect intellectually disabled people, who face higher rates of sexual violence.

A 2018 NPR investigation using U.S. Department of Justice data found that intellectually disabled people are seven time more likely to be sexually assaulted than those without disability. In many cases, the perpetrator is their caregiver or a family member who, if there is a subsequent pregnancy, may force them to get an abortion or carry the pregnancy to term regardless of their wishes, Powell said.

Disabled people already face challenges controlling their freedom to reproduce. Thirty-one states including Florida have laws on their books that allow permanent forced sterilizations for people under guardianships, and 17 allow the permanent surgical sterilization of children with disabilities, a 2022 report from the National Women’s Law Center found.

More than half of people with intellectual or developmental disabilities are under guardianship, according to one report produced by developmental disability agencies.

Powell, who is physically disabled, said restrictions on abortion would be a further loss of bodily autonomy for people with disabilities who should be, as much as possible, free to make their own reproductive choices.

“This is personal for me,” she said. “The denial of abortion as a fundamental right is just a continuation of a world in which we have denied people with disabilities and other marginalized communities basic reproductive freedom.”

A ‘crushing’ decision

Heagney and his mother were stunned and angry when they learned Mary was pregnant because the Polk County doctor had stopped her birth control based on his religious beliefs without consulting her family.

Mary had been diagnosed with mental retardation at the age of 3. From the age of 11, she lived in mental health hospitals and groups homes.

A hospital in Pennsylvania had recommended to her family that she use birth control as they believed she was sexually active with other patients. Mary was transferred to the G. Pierce Wood state hospital when her family moved to Florida.

Majorie Heagney, Mary’s mother, was her legal guardian. She and her son agonized over the decision but decided terminating the pregnancy was the best option since Mary’s medication significantly raised the risk that her baby would be born with significant medical issues or fetal anomalies. Having to make that decision was “crushing,” he said.

“My sister had the mental capacity of a 6-year-old and had to get an abortion because of someone else’s religious beliefs,” John Heagney said.

Mary died on Christmas Day in 1994 at 47 years old. Heagney feels that her story and the agonizing decision his family faced should be shared, particularly now that many states are adopting or are likely to consider blanket bans on abortion.

“Too many people who oppose a women’s choice think it’s a simple decision,” he said. “The frightening part is that if we were in that predicament in this country at this time, we would be faced with the real possibility of having no voice.”

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