Roxanne Schiebergen, a 30-year-old writer and actress who lives in New York, was in the bathroom of her Midtown apartment when she received a text from a close friend one day in May. The text included a screenshot of a marketing flyer promoting a “Bans Off Our Bodies” rally sponsored in part by Planned Parenthood. The photo in the ad showed four women — and the woman at the center was in a wheelchair.
Ms. Schiebergen said she looked at it with disbelief. She hoisted herself from the toilet and onto her manual wheelchair. She rolled herself into the living room and sent a reply to her friend in what became a marathon texting session.
The friend had sent the picture because Ms. Schiebergen had told her about her experience last July with Planned Parenthood of Greater New York: The organization had canceled Ms. Schiebergen’s appointment for an abortion at its clinic on Bleecker Street in Greenwich Village after she had informed a Planned Parenthood representative that she used a wheelchair, Ms. Schiebergen said.
“‘We don’t do procedures for people in a wheelchair,’” Ms. Schiebergen said the person told her.
Ms. Schiebergen said she felt “defeated and powerless” when the appointment was canceled. She tried pleading her case to the employee, she said. When that didn’t work, she called her doctor’s office, where health care professionals were familiar with her medical history, and she received referrals to other clinics in Manhattan. Ms. Schiebergen said she ultimately terminated the pregnancy at a clinic on East 40th Street. Her partner at the time paid the $2,000 bill, four times what Planned Parenthood charged for the procedure, she said.
“We deeply regret that Ms. Schiebergen was misinformed of Planned Parenthood of Greater New York’s ability to provide abortion care to patients in wheelchairs,” Samuel R. Mitchell Jr., the organization’s chief operating officer, said in a statement on Sunday, after initially issuing a statement saying that the organization could not comment on Ms. Schiebergen’s case because of privacy laws.
At the time of Ms. Schiebergen’s experience, Mr. Mitchell said, Planned Parenthood of Greater New York used a third-party vendor to schedule appointments. “Ms. Schiebergen’s appointment was clearly mismanaged and we sincerely apologize,” he said. “Last year, PPGNY ended its contract with that specific vendor.” The organization’s facilities comply with the American with Disabilities Act, he added.
Ms. Schiebergen, who grew up in the Netherlands, the daughter of a Dutch father and an American mother, said she had been trying to put her focus on her work over the last year, including writing a pilot for a potential limited series inspired by her experiences as a woman who has been partially paralyzed since she was a baby. The show is meant to capture “all the comedy and all the pain of living in a society that doesn’t see me,” she said.
The abortion, which she said she does not regret, has also been on her mind. The frustration she had felt on and off toward Planned Parenthood since the canceled appointment turned to anger when she saw the ad with the woman in the wheelchair, she said.
Dressed in jeans, a long-sleeve T-shirt and black boots on a June afternoon at a busy Midtown cafe, Ms. Schiebergen sipped a matcha latte with oak milk. “I want my privacy, but I also feel called to do this,” she said of sharing the story of the difficulty she faced in getting an abortion a year before the Supreme Court overturned Roe v. Wade.
She described herself as a supporter of Planned Parenthood and said she believed its role was more crucial than ever. “It is my nightmare that people might think I am here to attack Planned Parenthood,” she said. “I am here to fight for people like me.”
Going public with her story, she said, is an ironic reminder that the only way to get people to stop looking at her as a woman in a wheelchair is to draw attention to what it’s like to be a woman in a wheelchair.
The Accident
In July 1993, the Schiebergen family was driving through Pennsylvania to visit relatives. Ms. Schiebergen, 16 months old at the time, was in the car with her parents and three siblings when they were hit by another car.
All four children and their parents were taken to hospitals in the region, Ms. Schiebergen and her mother said, and more than a day went by before doctors realized the severity of Roxanne’s injuries. Surgery revealed damage to her spinal cord, in the area below the T-6 vertebra. She would not have full use of her legs for the rest of her life.
Read More on the End of Roe v. Wade
“Once I realized that, the pain was so intense, so incredibly intense,” Roxanne’s mother, Sandy Schiebergen, said in a phone interview.
After six weeks in a Pennsylvania rehabilitation hospital, Roxy, as she is known, returned to the family home near Amsterdam. “My husband, Roxy’s father, and I both concentrated on ‘What can she do?’” Sandy said. “We looked at what she could do, not thinking about what she couldn’t do, because that was too painful.” She enrolled her daughter in mother-and-child swim classes and later signed her up for ski lessons. Then came tennis and horseback riding.
“She fought every single day for me to have a normal life,” Roxy said of her mother.
When Roxy was on a sixth-grade class trip, the students were tasked with running up a long trail on a steep hill. School officials told Roxy they would drive her to the top. “She would not have any of that,” Sandy said, adding that Roxy wheeled herself to the summit. “People were talking about it for a long time after,” her mother said. “My experience with her is that she doesn’t run away, not from something that’s important.”
She learned to walk with leg braces and a walker, spending several hours a day standing upright, which was important for bone growth. But she preferred her manual wheelchair. “I want to be able to go fast,” she told her mother.
As a side effect of the injuries, Ms. Schiebergen developed scoliosis. She underwent three surgeries as a teenager to have metal rods inserted along her spine. She spent three months in a body cast.
As a tween, she developed a love of singing and performing. She joined her middle school’s production of the musical “Hair.” For her solo rendition of “White Boys/Black Boys,” the teacher overseeing the production had Ms. Schiebergen wear a costume out of keeping with the hippie-era setting: a large dress that draped over Roxy and covered her wheelchair.
“They had shame that I was in a wheelchair,” she said. “It’s a difficult existence, to have a different view of yourself than the world has of you.”
In 2010, she went to New York University’s Tisch School of the Arts to study musical theater. Learning to navigate crowded sidewalks and broken subway elevators was a challenge, but she said she loved New York life.
After her graduation, in 2014, she remained in the city, auditioning for plays, doing voice-over work and modeling. She traveled through Europe and South America with her close friend, Madeline Rhodes, a performer known as MuMu. Ms. Schiebergen returned to the Netherlands in 2018, when the metal rods in her back snapped. She underwent surgery and a long rehabilitation process.
The Cancellation
Ms. Schiebergen has spent most of the pandemic in New York. By spring 2021, she had started a relationship with a man. A month or so into it, she learned she was pregnant. “I was freaking out,” she said. “I kept on taking tests.”
She told few people about the pregnancy, besides Ms. Rhodes and her boyfriend at the time. Within days, she decided on an abortion. “I was in a brand-new relationship,” she said. “Having a family was something I wanted to do with someone I loved, and I didn’t know him.”
Ms. Schiebergen said she called Planned Parenthood of Greater New York on July 22 and spent about 45 minutes on the phone with an employee. “I was crying from the start,” she said. The employee asked if she had any pre-existing conditions, she recalled. “I told her I had a spinal cord injury and rods in my back from scoliosis,” Ms. Schiebergen said.
She did not say she used a wheelchair during the call, she added. “When people hear the word ‘wheelchair,’” she said, “they make decisions for me about what I can and cannot do without having any understanding of what I do for myself every single day.”
The Planned Parenthood representative scheduled an appointment, quoting a price of $500, she said. Later that day, Ms. Schiebergen was taking her dog for a walk when someone at the organization called to confirm. “By the way,” Ms. Schiebergen said she told the caller, “I’m in a wheelchair. Just making sure you guys have an elevator.”
A Planned Parenthood representative then canceled the appointment, saying the organization did not provide abortions to women in wheelchairs, Ms. Schiebergen said.
“I felt like this can’t be real,” she said. “I started bargaining. I said something along the lines of, ‘I can get on a table by myself. I’m very independent.’ This was through tears.”
People who work on behalf of those with disabilities said they were not surprised by Ms. Schiebergen’s case. “This happens all the time, unfortunately,” said Mia Ives-Rublee, director of the Disability Justice Initiative at the Center for American Progress, a liberal think tank. She said there were not statistics available on the number of women with disabilities who encounter difficulties in getting access to abortions, in part because of the shame that surrounds the procedure.
“We know there are significant issues in terms of accessibility for disabled patients of any medical clinic, and certainly abortion clinics and reproductive health clinics are included in that,” said Ms. Ives-Rublee, an author of the recent report “Reproductive Justice for Disabled Women: Ending Systemic Discrimination.”
A few weeks after her abortion, Ms. Schiebergen and Ms. Rhodes went to lunch with a friend who was a disability lawyer. The lawyer had a connection to Planned Parenthood and notified someone there about Ms. Schiebergen’s experience. On Aug. 13, Ms. Schiebergen received an email, which she shared with The New York Times.
“Hi Roxy,” a senior member of Planned Parenthood of Greater New York’s clinical staff wrote. “I am reaching out to connect with you regarding your experience while attempting to schedule an appointment last month. I am hopeful that you may be open to speaking with me and cannot express how sorry we are for the experience that you had.” (The staff member declined to comment for this article.)
Nine months later, in May, Ms. Schiebergen’s friend texted her the ad showing a woman in a wheelchair and the words “Planned Parenthood.” Ms. Schiebergen said that, when she saw it, “I felt genuinely confused, like maybe I had said or done something wrong.”
She decided to see if her experience was a fluke. She phoned the clinic again, this time recording the call. She told the person who answered that she was pregnant (although she was not) and wanted an abortion. “I have a spinal cord injury and I’m in a wheelchair,” Ms. Schiebergen said. “I can’t walk. I just want to make sure that that’s not an issue.” In the 22-minute call, the employee told Ms. Schiebergen that the organization could not provide an abortion for her because of her use of a wheelchair and her inability to stand on her own.
Later, a Planned Parenthood representative who had been apprised of the phone conversation, called Ms. Schiebergen to ask her more questions, including about her upper-body mobility. In a third conversation, the person told Ms. Schiebergen that Planned Parenthood could, in fact, give her an appointment for an abortion. (Ms. Schiebergen shared the recordings of the calls with The Times.)
“Ultimately,” Ms. Schiebergen said, “when someone who has a disability calls Planned Parenthood to schedule an abortion — which is already a frightening and chaotic experience — they should be welcomed and asked how Planned Parenthood can assist them in a way that is safe, without being told ‘no, no, no’ multiple times.”
The Protest
The day after our interview in the cafe, the Supreme Court published its decision to eliminate the constitutional right to an abortion. Ms. Schiebergen texted me to say she was going to an abortion rights rally in Washington Square Park.
We met on her Midtown block. She was wearing jeans, aviator sunglasses and a T-shirt. I hailed a taxi. As Ms. Schiebergen rolled herself toward it, the driver pulled away. I hailed a second cab. When the driver saw Ms. Schiebergen wheeling toward him, he said, “I have to go pick someone else up.” Because of traffic, he wasn’t able to speed off like the previous driver. “This is every day,” she said.
The third taxi driver who pulled over claimed her wheelchair wouldn’t fit in the trunk. “It will,” Ms. Schiebergen said. She put one hand on the car’s back seat, another hand on the top of the window frame and lifted herself into the car. She then slid a hand behind one of her calves and brought one leg into the cab, then the other. I took the wheelchair into the back, where it fit easily. The process took less time than it takes to get a baby and stroller into a taxi.
The everyday discrimination faced by Ms. Schiebergen is all too common, said Robert Fuller, an associate professor of obstetrics, gynecology and maternal-fetal medicine at the University of Virginia. “In doctor’s offices, in taxis, in shopping malls and restaurants, this is what happens to people with paralysis every single day,” said Dr. Fuller, who specializes in high-risk maternal care, often for paralyzed women.
Statistics on abortions for women with disabilities are hard to come by, Dr. Fuller added. “But what happened to Roxy is probably more common than people realize,” he said. Women with paralysis, he continued, “are excluded from conversations about reproductive care because there is an assumption, ‘Oh, they could never do that.’ In fact, paralysis does not affect fertility in women.”
There is no medical reason to deny an abortion to a woman who is paralyzed just because she is paralyzed, Dr. Fuller said. But there are questions that should be answered to determine if she can safely have an abortion at a clinic, as Ms. Schiebergen did, or if she should undergo the procedure at a hospital. Those questions, he said, include: Does your mobility affect your physical ability to receive pelvic exams? Are you able to medically tolerate gynecologic exams or procedures? How high is your spinal cord injury?
He added that abortion providers should ask women who use wheelchairs if they suffer from autonomic dysreflexia, a condition that afflicts some people with spinal cord injuries. If a paralyzed woman has the condition, that does not automatically mean she should have procedures only in a hospital setting, Dr. Fuller said, but a doctor familiar with her health history should be consulted.
Near Washington Square Park, Ms. Schiebergen and I got out of the taxi as the rally was already underway. She wanted to take hold of an edge of a large banner that the crowd was carrying up Fifth Avenue, but she couldn’t. “I need both hands to march,” she said, rolling herself forward.
The visit brought Ms. Schiebergen close to her N.Y.U. haunts, and also near the Bleecker Street clinic. She said she hoped it would welcome her and other paralyzed women who would need its services in the future.
“Because if you can’t get an abortion in Greenwich Village, New York,” she said, “where can you?”
Source by www.nytimes.com
