‘Why am I having to explain this?’: Seven stories of barriers to reproductive care for those with disabilities

Pregnancy, for the average person, is an exercise of extremes — swelling body, welling emotions, surging hormones. For people with chronic conditions and other disabilities, the experience can be even more jarring, full of additional barriers, stigma, and risks.

But it’s not just pregnancy. In the United States, disabled people are less likely to be taught comprehensive sexual education and given access to contraceptives, and are more likely to have unintended pregnancies. And during pregnancy, the disparities are just as devastating: Disabled women are more likely to have adverse birth outcomes and to experience pregnancy complications, in part because they often are on medications that interact negatively with pregnancy. The Supreme Court’s decision to overturn abortion as a constitutional right adds gasoline to an existing fire. “I think the Dobbs ruling has a huge, unfortunate, detrimental impact on people’s lives,” said Monika Mitra, director of the Lurie Institute for Disability Policy at Brandeis University.

These are barriers with deep roots.

Historically, disabled and chronically ill people, especially people of color, were restricted from making choices about their health and childbearing, Mitra said. That kind of discrimination persists today: families, clinicians, and others police disabled people’s activities and bodies, many health care settings remain inaccessible, and courts and child welfare agencies continue to question whether disabled and chronically ill people can be good parents.

“We cannot separate out reproductive care access, we cannot separate out perinatal care access, outcomes, experiences, without talking about eugenics,” she said. “We cannot talk about it without contextualizing it within the history where people with disabilities were forcibly — and continue to be — institutionalized … And the third piece of it, which they’re all interrelated, is that people with disabilities were, and still are, seen as nonsexual beings.”

STAT spoke with seven people about their experiences seeking out sexual and reproductive health care, becoming pregnant, having an abortion, or parenting while disabled or chronically ill. Their disabilities and conditions span the spectrum, but reflect existing and new problems faced by childbearing people in the United States, especially those who are part of historically marginalized groups.

Each step, from the quiet contemplations of pregnancy to the dramatic experience of childbirth and the challenge of parenthood, was made more complex — at times, more risky, or difficult, but also more euphoric — by their disabilities and chronic conditions.

Stefanie Kaufman-Mthimkhulu

Age: 27
Location: Rhode Island
Chronic conditions/disabilities: Inflammation-related disorders, muscular myopathy, extreme exhaustion, neurodivergence (autism)

When Stefanie Kaufman-Mthimkhulu’s partner woke up one day in January 2019 and told her he had dreamt she was pregnant, she didn’t believe it. She’d been told in college that she wasn’t ovulating and that her ovaries were covered with cysts, which meant she’d likely need in vitro fertilization or hormone treatment to get pregnant. “Even though I was in college and I was young, I was definitely upset … I think I realized in that moment that there was a part of me that didn’t feel like I would ever be capable of raising a child, particularly because of my mental health issues.”

Her first pregnancy was traumatic. “For a lot of disabled folks, you get used to maybe the size or the shape or the way that your body moves, or knowing like, this joint moves in this way. You know your body. And when you’re pregnant, everything is up for moving and changing.”

Delivery was no better. Kaufman didn’t want an epidural, and had said so. She’d spent many months of her life unable to move her legs after a surgery to remove infected tissue from her spine, and had no desire to lose sensation in her lower body during birth. But clinicians insisted, telling her she had to get an epidural or leave the hospital and return when her cervix was more dilated. “I spent 11 hours of labor in this dissociative state, trying not to panic.”

“When I had a three-month-old and I found out I was pregnant again, I was like: no. I picked up the phone and called Planned Parenthood.” Kaufman was living in New York at the time, and secured an appointment for a medication abortion within a couple of days, at a clinic 45 minutes from her home. She was about seven weeks pregnant.

“But no one actually prepared me — maybe it’s obvious, I don’t know — that I was going to pass something that I’d need to look at and identify and be like, ‘That’s it.’…I’m a hundred freaking percent pro-abortion. But what I was looking at was the beginning of a placenta forming, that’s how I perceived it. And I definitely had an emotional breakdown.” Kaufman bought a box, wrote a note “thanking this spirit for coming through,” and buried it with flowers in her backyard.

“There’s this thing with abortion where people are really scared to talk about the impact it has or how we navigate that spiritually. Because a lot of people’s arguments hinge on, ‘It’s not really a life until it comes out.’ That’s not the hinge point for me. Whether it’s a life or not, it’s still my decision if I’m going to bring it into the world or not.”

She is now pregnant again, and looking forward to giving birth in June.

Leigh Krauss

Age: 34
Location: California
Chronic conditions/disabilities: Multiple sclerosis

Leigh Krauss was diagnosed with multiple sclerosis nearly a decade ago, in her final year of her schooling as a physical therapist. It took her years to figure out what lifestyle, workload, and tools worked best for her to manage her disease.

When she decided, a few years ago, to become a parent, she knew pregnancy could trigger post-birth rebounds of MS symptoms. Krauss and her husband, with support from their families, opted for IVF and surrogacy. Her employer’s health plan covered egg freezing, but her family had to pool resources to hire a surrogate, which can cost more than $100,000.

“Our first surrogate went into a very, very preterm labor. She was put on bed rest at 24 weeks and delivered at 27 weeks — very, very small, like one pound. It was like the smallest thing you can imagine,” she said. Her baby “really fought hard,” she said, but passed away within weeks.

Making the decision to try again less than a year later was “immensely hard,” Krauss said. “I just figured, ‘Okay, we can just start the process and try to heal as we go,’ which we did in some ways.” That pregnancy gave Krauss a healthy baby boy this summer — but she’s had to grapple with the what-ifs, and guilt.

“Like, ‘Maybe if I had carried, this would have been different.’ … Did I miss some kind of bonding that happens between mom and son or daughter in utero? There’s a lot of questions about that. But I think if you keep asking yourself all that stuff you’ll drive yourself a little crazy. And you do have to make peace with it at some point.”

She knows pregnancy could have sent her body haywire. To become pregnant, she would’ve had to go off her medication, Tysabri — which could, in turn, trigger symptoms to rebound. “I had my life pretty rigidly set to maximize what I’m doing and my energy levels and, even not carrying, it’s still a huge adjustment for anybody.”

“At the start, when I was super exhausted, I definitely had more symptoms that I don’t live with daily, popping back up. But we wanted this so badly and especially with what we went through, I just came from a place of gratitude — that I’d really wished for this so much.”

Brianne Dollar

Age: 22
Location: Georgia
Chronic conditions/disabilities: Three years in remission from acute myeloid leukemia, graft-versus-host disease on reproductive organs, peripheral neuropathy, neurological issues and iron overload from chemotherapy

Brianne Dollar was 17 when she was first diagnosed with acute myeloid leukemia. Doctors briefly mentioned that she’d probably lose her fertility as a result of the treatment, but childbearing was a less urgent matter than her rapidly progressing cancer. She received seven months of chemotherapy but ultimately relapsed, at which point doctors suggested she undergo a bone marrow transplant.

“This is kind of where I was told if I wasn’t infertile already, I would likely be afterwards,” she said.

She developed graft-versus-host disease, an inflammatory response to the transplant, that gave her constant urinary tract infections and scaly patches on her vagina and labia.

It took almost two years for her to learn, during an appointment at a survivor clinic, that she was in permanent menopause at 21. She felt an overwhelming sense of disappointment. “It took me a bit to get a little angry about that,” she said. “I started hearing about more resources, like there’s resources for patients who have cancer to get their eggs frozen. And I’d never been told that. I always just figured that if it was an option for me, they would have said it.”

Because she was so young when she had cancer, getting to know her sexuality was delayed. “Dating and sexual experiences are something that I didn’t really get to have. And for a while, they were just unsafe. I wasn’t allowed to do anything. Kissing someone would have been like, be careful, because my transplanted immune system was so weak. I had to wear a mask before wearing a mask was cool.”

The Dobbs decision weighs on her in rural Georgia. “Even if I did get pregnant, I would have struggles actually carrying a child to term. I would be scared to go to a doctor in Georgia and tell them what’s going on.”

“None of the providers down here have probably seen anyone who has ever had vaginal GVHD or who has had a transplant … theoretically, the only place I can go is Atlanta, but I can’t drive. It’s four and a half, five hours away from here. So I haven’t actually seen an OB/GYN in over a year.”

“And there’s now talks to ban birth control in certain states,” she said. “And birth control is how I get my hormones … And that’s for lowering my risk of osteoporosis and managing my menopause symptoms.” She’s exploring an IUD as a long-term option, but knows it would probably require that long drive to Atlanta, to specialists who understand her unique health history and concerns.

Syndey Rose Sandoval

Age: 24
Location: Georgia
Chronic conditions/disabilities: Generalized anxiety disorder, panic disorder, ADHD, endometriosis, PCOS, POTS, hEDS

Sydney Rose Sandoval’s first period, in the eighth grade, was awful. “For probably a year after that, I would miss school for a few days because the bleeding was so heavy and I was in so much pain…My mom thought I was dramatic until I was 18, and she was in the doctor’s office with me.” Sandoval sobbed as the doctor inserted his fingers into her vagina and tapped on her abdomen. “My mom looked at me and, in front of the doctor, was like, ‘Sydney, you’re being dramatic. This isn’t painful.’” But the doctor knew something was off. She needed surgery to drain the many cysts inside her — one the size of a softball — and laser away out-of-place endometrial tissue.

The surgeon ran dye through her fallopian tubes to make sure everything was fine, and found both tubes blocked. Doctors were able to unblock the right one, but not the left. “So that means that up until that point, I was not ovulating, for sure. And from that point on, if I am ovulating, I’m really only seeing one egg every other month.” She remembers the doctor telling her she shouldn’t wait to have children — that she should get pregnant now or risk never having kids.

She was 18.

“I had plans, and still do have plans. That information, I wish I never got it, because ever since then, it feels like there’s this clock on my womb.”

“It took me a while to accept that there’s more to me than procreation because, for a while, I felt if I couldn’t do anything else, I could have a child. Like, if I don’t get my doctorate and practice in whatever field, I can still raise a good human. I love kids and have always wanted a big family. And the one thing my body was made to do, it essentially can’t. And if it can, it’s going to be very difficult. So that was a very hard pill to swallow, and still is a hard pill to swallow.”

Sandoval needs another surgery to laser off more tissue, but is putting it off until she’s ready to get pregnant (her chances are highest in the months that follow). She has had at least three ovarian cysts rupture, causing such shocking pain that she once collapsed in a hospital parking lot after driving herself to the emergency room.

April Meredith

Age: 44
Location: Tennessee
Disabilities: Retinitis pigmentosa, psoriatic arthritis, chronic pain, anxiety, and depression

When the Dobbs decision landed, April Meredith, a mother of three and an independent living specialist, found herself processing the news in the Empower Tennessee offices where she works. She hosts Empowered Ladies, a support group she runs for women with disabilities in Tennessee.

“Reproductive health care is on people’s minds right now. You might be training somebody to use a screen reader and say, ‘Just look something up.’ They pull up what’s on their minds.”

But she also knows firsthand how critical it is to be able to get safe, accessible health care. She herself needed a D&C — the procedure used to remove a pregnancy from the uterus —  due to a miscarriage. And she faces obstacles to accessible medical care, as well as the harmful assumptions of strangers and health care professionals. At the gynecologist, she has been peppered with questions about her RP or arthritis, even when those conditions were unrelated to her visit. “I even had a receptionist, as I was checking in to a clinic, say, ‘I think I’d kill myself.’ Just openly saying it in a large lobby for other people to hear. I said, ‘Actually, I have other disabilities. Two of them are anxiety and depression,” Meredith said. “She said, ‘No wonder.’ Then I thought, ‘Why am I having to explain this when I’m checking in to my gynecologist’s office?’ It had nothing to do with why I was there.”

Meredith is exasperated by the level of education about basic disability etiquette she has to give health care professionals. The independent living movement has progressed in integrating people with disabilities into mainstream society, she said. But sometimes, it is necessary to step back and provide basic training on how to best serve those with disabilities.

One of the most common assumptions about parents with disabilities, she said, is they shouldn’t have children at all. For her, it’s natural to talk with her husband and children about disability — she takes them to disability-focused events and teaches them about all accommodations she uses, like audio descriptions. Meredith doesn’t shy away from the family’s concerns, especially since retinitis pigmentosa is genetic. So far, none of her children have shown signs of RP. She’s told them that if they “do get diagnosed with RP, we’re going to grieve. But you’re going to have lots of resources available to you.’ My children won’t stay scared as long as I did,” Meredith said.

Being a parent has also turned her into an advocate for other parents with disabilities. She admires that women with disabilities of her daughter’s generation are able to focus their activism on intersectional identities, or on identities other than disability, like race or gender. “I like that younger women (with disabilities) are able to focus on womanhood and not have to fight as much on the disability rights side,” she said.

But she’s deeply worried about what she sees as the “subtle stripping away of access” and the lackluster enforcement of the Americans with Disabilities Act.  “It feels like there has been no let up,” she said. “People’s threshold to take on more is lower, but in an ideal world, we wouldn’t be fighting for any of our rights.”

Candice “CJ” Walker

Age: 42
Location: Virginia
Chronic conditions/disabilities: Chronic hives, iron-deficiency anemia, latent autoimmune diabetes in adults (LADA), disordered eating, depression

CJ Walker’s life with illness started with a sudden onset of chronic hives, followed by a diagnosis of iron-deficiency anemia at 37. After six months of treatment, she went for a follow-up visit. Her blood sugar levels and her A1C were off, and a doctor diagnosed her with type 2 diabetes in 2019.

“It was a surprise, first off. I’ve always felt that something just wasn’t right because I was very active. I was eating a moderately low-carb diet at the time, because I was diagnosed with gestational diabetes for two out of my three [pregnancies].”

Walker was also 99 pounds — underweight, with a low BMI. She tapped into online diabetes forums and kept finding others who were diagnosed with Type 2 but had strange symptoms or stopped responding to treatment. It was their posts that led her to realize she didn’t have type 2 diabetes, but another condition called latent autoimmune diabetes in adults.

She also discovered she had orthorexia, a type of disordered eating, and began receiving treatment for that condition. All the while, Walker was raising and homeschooling three children, one of whom has autism.

In 2020, Walker’s older sister died, sending her into a depression that made it even more difficult to chart a path forward with chronic illness.

Walker’s sister, who also had diabetes, was her accountability partner. “We checked up on each other, making sure that we were taking care of ourselves.” Now, she relies on her other family members.

Her diagnosis — and her awareness that diabetes runs on both sides of her family — has become an integral part of how Walker parents. “I had to teach my kids, for example, what to look out for when it comes to me experiencing complications from diabetes. If my blood sugar, in particular, is too low, I could feel that; I cannot feel my highs at all. So I had to teach them what to look out for so they know what to do.”

“My youngest would come into the room if he sees me resting out or something like that. He would ask me, ‘Mommy, are you okay? Do you want some water? Do you want something to eat?’ So he knows exactly what to look out for if he comes into a room, if he sees me really exhausted.”

Linda Goodliffe

Age: 52
Location: North Carolina
Disabilities: Immunoglobulin (IgG) deficiency, Hashimoto’s thyroiditis — an autoimmune disease that occurs when the body makes antibodies that attacks the cells in the thyroid, PCOS, endometriosis, PTSD, ADHD

Linda Goodliffe is a retired Navy medic who worked in postpartum care in a military hospital for years, and longed to have children. But she was one of a growing subset of active-duty military members and veterans who have experienced infertility.

Of all the disabilities and disorders with which doctors have diagnosed her, she said, PCOS, which caused her infertility, was the hardest to take. Her health issues began in 1992, and she spent years trying to pinpoint diagnoses. But by the time she was diagnosed with infertility, she was in so much pain she thought she was going to die. “Infertility is a long, hard, trudge through hell,” said Goodliffe, who estimated she spent $6,000 trying to get pregnant without a partner before finding out she couldn’t bear children. “When you get that happy ending, it’s all worth it, but if you don’t, it’s simply a long, hard trudge through hell. And you’re all alone in your trudge.”

Goodliffe believes her disabilities, none of which are hereditary, are the result of exposure to toxins during her service during Operation Desert Shield. She was diagnosed in approximately 2010 with PCOS and Hashimoto’s thyroiditis.

“I would never have dealt with infertility if I had never joined the military. I wouldn’t have been exposed to toxins,” Goodliffe said. “There’s a line of demarcation in my life. When I worked on postpartum and in labor and delivery, I used to dream about being pregnant every night. But my immune and reproductive systems have not been the same since 1992.”

When she entered the military, Goodliffe said she was  “the queen of powering through anything.” She credits her military training for teaching her behavior modifications for her ADHD, and says part of the reasons she and other veterans have not received adequate medical care for their conditions is because the Department of Veterans Affairs’ system is so cumbersome. In particular, she said, she believes she would have gotten more personalized care for her complex set of diagnoses if she had gone outside of the VA and to a research hospital.

But she is hopeful that the recently-passed PACT Act, which expands benefits for veterans exposed to toxins, will help her and others receive the care they need. Goodlife, who recently opened a bakery in North Carolina with her mother,  hopes to one day expand her family through adoption.

Correction, Jan. 4, 2023: A previous version of this story misspelled Candice “CJ” Walker’s name. 

This story is part of ongoing coverage of reproductive health care supported by a grant from the Commonwealth Fund.