Conceiving and getting pregnant as a person with a physical disability is both possible and common. But frequent misconceptions about people with disabilities (both in and out of the reproductive health field) may have you thinking otherwise.
The fact is that an estimated 12% of people with ovaries who are of "reproductive" age have a disability — and research suggests that pregnancies are as common among people with disabilities as they are among those without. Even so, these pregnancies are often mischaracterized as rare, dangerous, or impossible. Why is that?
Below, we’re breaking down what conceiving and giving birth with a disability is really like to help you prepare to navigate possible barriers and find the right multidisciplinary providers to give yourself the best pregnancy and birthing experience you can. Here are the main takeaways before we jump in:
- Ableism is a systemic issue. Bias and discrimination have a far-reaching impact on all aspects of fertility and prenatal care, as well as on delivery and beyond.
- Many physical disabilities on their own won’t impact fertility, but some autoimmune and connective tissue disorders, as well as multiple sclerosis and stroke, may. Also, some people with disabilities may have difficulty or discomfort when trying to conceive through penile-vaginal sex. In any of these situations, assisted reproductive technology (ART) procedures like in vitro fertilization (IVF) can help.
- Pregnant people with disabilities may be more likely to experience certain complications (like more urinary tract infections) or issues around accessibility. Pregnant people with disabilities are also twice as likely to deliver their newborns via Cesarean section (C-section) — and pregnant people with spinal cord injuries or musculoskeletal disabilities may not be offered epidurals.
- People with disabilities may have some challenges when it comes to postpartum care (e.g., breastfeeding/chestfeeding), but working with providers who have the right training can help.
The bottom line is this: The reality of conceiving, being pregnant, and giving birth as a person with disabilities is complex — but having a support system, access to accurate info, an inclusive medical team, and, if needed, multiple medical opinions can help you navigate it all. With this article, our aim is to provide you with the knowledge you need to prepare for what comes next.
How might barriers to reproductive and sexual healthcare impact people with disabilities?
While many of us know that reproductive and sexual health is wildly under-researched, when it comes to people with disabilities, the lack of healthcare access and inclusive resources reaches another level. Before we can get into the specifics of conception, pregnancy, and birth in the disability community, it’s important to understand some of the larger reproductive healthcare problems that may be at play:
- When people with physical disabilities seek basic gynecological care, such as cervical cancer screenings, contraceptive options, and sexually transmitted infections (STI) testing, they may be entering an environment where they aren't viewed as sexual beings who may or may not desire a family.
- The unfortunate reality is that many doctors aren’t trained to examine people with mobility issues and disabled bodies.
- People with disabilities are significantly less likely to be screened for cervical cancer than the general population.
- Pregnant people with disabilities have also reported avoiding prenatal care because of previously harmful experiences with doctors.
Social scientist Dr. Jennifer A Piatt, PhD, CTRS is an associate professor of recreational therapy at Indiana University who studies the experiences of women with disabilities and spinal cord injuries as they navigate sexuality, pleasure, relationships, reproduction, and healthcare. In one of her studies, she interviewed recreational therapists who work in community and hospital settings to research their attitudes about disability and sex. Here's what she learned: “Overall, allied health professionals believe sex and disability is a very important topic that should be addressed in rehabilitation,” Dr. Piatt says, “but they don’t feel like they’re trained to address it, and feel uncomfortable addressing it.”
While an overhaul of ableism both in and outside of education is required to combat this issue, medical organizations have taken some steps to improve training. For example, the Centers for Disease Control and Prevention (CDC) have released the Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities and several recommendations for doctors treating patients with disabilities — and the American with Disabilities Act provides recommendations for doctors treating patients with mobility disabilities.
However, given just how systemic the problem of ableism is, it influences everything from how people with disabilities navigate dating and sex to the care they receive at the fertility clinic and in the labor and delivery wing. We're discussing it all below.
Can physical disability affect fertility?
Despite the above attitudes, physical disabilities on their own often won’t directly create new fertility issues or impact your ability to conceive. In fact, a 2008 study of women with spinal cord injuries found that, of the 44% of the participants who wanted to get pregnant, 36% of them went on to successfully conceive. While studies of fertility among disabled people are few and far between, the existing research also finds that pregnancy rates for women with disabilities “are similar to rates for women without disabilities.” In fact, various social barriers and the stigmatization of disabled sex and relationships — like not having a regular sex partner (women with disabilities report lower rates of sexual activity) or experiencing discomfort during penetrative sex — are thought to have the greatest impact on fertility.
The only disabilities currently known to potentially affect fertility directly are some autoimmune and connective tissue disorders (specifically rheumatoid arthritis, lupus, and scleroderma) as well as multiple sclerosis and stroke. Here's why:
- If you have an autoimmune disorder, you produce auto-antibodies that can damage sperm and ovaries, disrupt hormone levels, or prevent a fetus from receiving nutrients and oxygen.
- Rheumatoid arthritis can interrupt ovulation, which would make it difficult to conceive.
- High doses of non-steroidal anti-inflammatory drugs, which are often treatments for the above disorders, can affect fertility — but fertility may be improved for those with chronic inflammation by taking daily steroids and aspirin under the guidance of a doctor.
- Multiple sclerosis medications can also interrupt or delay menstruation.
- Among people with ovaries who have multiple sclerosis, other neurological disorders, or who've had strokes, between 72% and 85% of patients report having an irregular period, which means ovulation is likely also irregular.
If you're experiencing any of the situations we outlined above, assisted reproductive technology (ART) can help you conceive (more on this later).
The truth about sex and disability
Another factor for opposite-sex couples who are trying to conceive is the ability to have penile-vaginal sex, but some physical disabilities can make doing that uncomfortable or painful (and the unavailability of inclusive sex education makes it even more difficult to navigate this issue):
- Disabilities including sacroiliac joint (SIJ) dysfunction and multiple sclerosis, as well as some disabilities associated with strokes and traumatic brain injuries, can result in pelvic floor muscle tightness, explains pelvic floor specialist Dr. Stephanie Stamas, DPT, PT, ATC, PRPC. (FYI, your pelvic floor is the group of muscles that extend from your pubic bone to your tailbone — Stamas describes it as the “bicycle seat” area of your body.) This tightness can make it difficult to have penile-vaginal sex because of severe pain or restriction of the vaginal opening. That said, pelvic floor therapy can help you relax these muscles so you can more comfortably and safely have intercourse.
- Limited hip mobility can also make penile-vaginal intercourse difficult if it’s not easy to spread your legs. On her blog, author and sex educator Eva Sweeney of Cripping Up Sex with Eva suggests considering non-sex positions you find comfortable, including sitting in a chair or laying on your side, and incorporating them into sex.
How assisted reproductive technology (ART) can help
If you don’t have a partner, your partner also has ovaries, you can’t comfortably have penile-vaginal sex, or you have fertility issues related or unrelated to your disability, assisted reproductive technology (ART) procedures like in vitro fertilization (IVF) may be the next step on your path to parenthood.
As Dr. John Harris, MD, MSc, an OB-GYN and the director of The Center for Women with Disabilities at UPMC Magee-Womens Hospital, says, “All women, regardless of medical diagnosis or disability, can possibly have infertility — and everybody should have the reproductive freedom to seek infertility care.” However, just like we’ve already established in other areas, discrimination and medical bias may limit or shape your access to fertility treatments.
Here are some of the obstacles and additional procedures that may arise if you're seeking ART as a person with physical disabilities:
- Medical bias: Some doctors may not be familiar with disability, which can lead to assumptions about treatment success and healthy pregnancy. Dr. Harris says that his patients with physical disabilities have told him they were initially denied treatment. “Doctors will say they don’t want to treat them or say they don’t feel comfortable offering fertility treatments because they think pregnancy will be dangerous,” he explains, “but doctors can assume a high-risk status that may or may not actually be true.” In these instances, Dr. Harris recommends scheduling a preconception appointment with a high-risk pregnancy specialist to determine whether or not pregnancy may actually be risky — then bringing the information and advice back to your fertility doctor and letting them know that you want to pursue treatment.
- Affordability: Since fertility treatments aren't always covered by insurance, Dr. Harris points out that people with disabilities tend to have lower incomes than nondisabled adults. Because of these factors, the cost of ART can be prohibitive.
- Genetic testing: While genetic counseling and preimplantation genetic testing are common for many people undergoing IVF, patients with disabilities often report feeling pressured to get more tests than necessary because providers may be concerned about “passing on” the disability. In fact, some patients with disabilities say they've been pressured to get genetic testing for a disability that has nothing to do with their genes (such as a disability caused by an injury).
- Discomfort: If your physical disability tends to cause discomfort during regular pelvic exams, you may experience that same discomfort during ART procedures. In these situations, assuming different positions in the exam room can allow you to access the exact same treatment as anybody else.
How can physical disability impact pregnancy?
Talking to a provider who doesn’t specialize in disability healthcare may result in conversations that frame your pregnancy as inevitably high risk or unusually complicated.
"Many providers tend to forget that our reproductive organs are the same, therefore much of childbearing is exactly the same," Dr. Harris says. "There will be some differences, but when people with disabilities are often told it would be very difficult being pregnant, usually that’s overestimated.”
That said, disability can still impact pregnancy when it comes to specific complications, as well as issues around accessibility — but that doesn’t mean you won’t have a healthy and safe pregnancy. Rather, there is some additional discomfort and frustration you may have to navigate along the way.
1. Health and treatment plans: Birthing people with physical disabilities might experience specific health issues and exacerbated personal discomfort while pregnant, depending on their specific disability. This can require more medical intervention or complex treatment to ensure their own safety as well as the health of their pregnancy. Here are some examples of what you may experience:
- Chronic pain: If your disability is accompanied by chronic pain, pregnancy can exacerbate those symptoms. In this situation, Dr. Harris says the best thing to do is ask the doctor who helps you manage and your OB-GYN to collaborate and co-manage your chronic issues to figure out what treatments and/or medications are safe.
- Urinary tract infections (UTIs): People with spinal cord injuries who use wheelchairs can be more prone to urinary tract infections (UTIs) during their pregnancy, according to a 2017 study that followed the pregnancy experiences of 25 women with physical disabilities. However, that same study said that the infections among participants were “relatively minor and easily brought under control.”
- Ulcers: Pregnant people who use wheelchairs may develop pressure ulcers or other issues with skin health because of the impact of pregnancy weight gain on their ability to shift their weight in their wheelchairs.
- Lung capacity issues: Pregnant people who have disabilities that can impact their breathing may need to schedule appointments with a pulmonologist alongside their usual OB-GYN visits to monitor their lung capacity throughout pregnancy.
- Medication issues: Common medications used to treat multiple sclerosis and other neurological conditions by regulating the immune system are often newer, so they may lack the necessary research around their effects in pregnancy, Dr. Harris explains. For this reason, your provider will help you transition off of any medications that may potentially harm the fetus. “If you can, talk with your neurologist about your plans for pregnancy before conceiving — and have discussions about your medications and how to move forward,” Dr. Harris recommends.
- More prenatal appointments: Dr. Harris says, depending on the physical disability, pregnant people with disabilities may not be able to feel fetal movement. Providers may recommend additional prenatal appointments to ensure the pregnancy is healthy.
2. Possible mobility aid issues: “The basic way that we think about pregnancy and disability is that pregnancy can challenge a disability and make it harder for someone to function as they usually would for a period of time,” Dr. Harris explains — and that includes newly limited mobility if you use a wheelchair. Here’s some of what you might experience so you can be prepared:
- Temporary wheelchair use: Pregnant people with disabilities that affect mobility but who do not normally use a wheelchair may need to use one while pregnant since their center of gravity and balance changes, according to the National League for Nursing (NLN).
- Difficulty transferring the body: In addition to the skin health issues mentioned earlier, pregnant people who already use wheelchairs may have more difficulty transferring themself from the chair to another mobility aid because of their weight gain. Moreover, if they can no longer fit into the wheelchair designed for them, it can be difficult to transfer from their bed to their chair or to navigate a bathroom. Because this aspect of wheelchair use can become difficult throughout pregnancy, everyday independent tasks like cooking and driving may be less accessible.
There are steps you can take to alleviate these issues, like special cushions for wheelchairs that help you to distribute your pregnancy weight more easily — but there's no one-size-fits-all approach. As one birthing parent with disabilities shared with the American Psychological Association, this kind of cushion resolved one problem but then “made lower body dressing difficult.” It’s ultimately up to each individual to figure out what will be most beneficial for them throughout their pregnancy.
3. Accessibility issues at prenatal appointments: Finding a hospital with doctors who work with patients who have disabilities or a center for disabilities can help ensure you’ll be treated in accessible examination rooms, but taking on that responsibility can feel like a lot of added stress. You can actually find these kinds of doctors at a lot of major medical centers, Dr. Piatt and Dr. Harris both emphasize, but not everyone has the ability (due to finances or location) to receive care at these facilities. The experts are here to help you prepare for some of the barriers that may arise during prenatal appointments:
- Limited space in examination rooms: “Prenatal care can be pretty challenging in terms of space if you use a wheelchair,” Dr. Harris explains, since many clinic rooms and OB-GYN offices are on the smaller side. You need space to be able to transfer yourself to and from the exam bed — and the exam bed needs to be height-adjustable in order to make that transfer in the first place. You also need the clinic bathroom to be wheelchair accessible in order to provide the many urine samples required of you during pregnancy, and smaller OB-GYN clinics may not have that space.
- Inaccessible scales: Monitoring weight is an essential part of pregnancy care, as it ensures that you're gaining enough of the recommended weight at a steady rate to facilitate your baby’s development. But Dr. Piatt shares that some patients who use wheelchairs report not being weighed at these appointments since OB-GYN clinics don’t have accessible scales, and adds that this is also the case for many non-pregnant disabled people at their annual appointments.
While there unfortunately aren't comprehensive databases of all accessible hospitals and clinics in the US, some hospital groups and insurance providers may include a wheelchair icon (or some other indicator of accessibility) in their search tools.
Does physical disability play a role in labor and delivery?
Because hospitals often have more resources than smaller OB-GYN clinics, Dr. Harris says rooms in labor and delivery (L&D) wings typically won’t have the same space issues. “Most hospital beds are also equipped with a squat bar for someone in labor to hold onto," adds Dr. Stamas. "If their disability makes it hard for them to push, they can instead focus on pushing their hands into the squat bar, which will automatically get the abdominal muscles to contract and assist with pushing.”
However, since you’ll often encounter lots of new doctors and medical staff for the first time you go to the hospital to deliver your baby, Dr. Harris says that you may notice some providers in the L&D wings are not as familiar with disability. If you found prenatal care that was right for you and gave you ideal support, then it can be especially disheartening to suddenly receive treatment that is not as personalized to your physical needs.
Below, we're covering what's important to consider when getting your birth plan ready as a parent-to-be with a physical disability so that you can better take charge of the process.
1. Disability and Cesarean sections (C-sections): Pregnant people with disabilities are twice as likely to deliver their newborns via Cesarean section, commonly referred to as C-section. At times, this is absolutely necessary for the safety of the birthing parent and the baby, but some research suggests the link between increased C-section rates and patients with disabilities needs to be explored further to ensure that all pregnant people are receiving the most appropriate care.
Whether or not your healthcare provider recommends you get a C-section depends on your health and pregnancy. “If the provider suggests a C-section for their delivery, the pregnant person should be given the information to understand why," Dr. Harris explains. "There are a variety of reasons why a C-section may be more appropriate, but there are lots of reasons why people could be very eligible for trying a vaginal delivery.” It all comes down to asking your provider any questions you have about their recommendation to make sure you understand your options and can do what’s best for you and your pregnancy. You can always seek out a second opinion if you're feeling unsure about your provider's approach.
2. Disability and epidurals: Pregnant people with spinal cord injuries or musculoskeletal disabilities (conditions like spina bifida, osteogenesis imperfecta, and cerebral palsy) may not be offered epidurals. Why not? Since epidurals work by entering the central nervous system, Dr. Harris says that any history of surgery on the spine or the brain (which is common for people with these disabilities) could make the anesthesia ineffective and unsafe. That doesn’t mean you can’t get an epidural, but an anesthesiologist would need to assess the situation before you go into labor to figure out what’s best for you.
What's it like to receive postpartum care if you have a physical disability?
“Another area where disability unfortunately causes challenges is in postpartum care,” says Dr. Harris, who uses breastfeeding/chestfeeding as an example. “Nurses used to educating people on breastfeeding are suddenly very confused if someone has quadriplegia or a condition that throws off their standard counseling.” Working with a lactation consultant at your hospital can be helpful because they’re more likely to have nuanced training for resolving breastfeeding/chestfeeding challenges.
What can help you manage pregnancy more easily when you have a physical disability?
As unfairly complicated as parts of the process may be, it’s important to remember that a powerful support system and access to accurate info — as well as an inclusive medical team and, if needed, multiple medical opinions — can help you have a joyful pregnancy even when days are hard:
- Access all the information, resources, and social support you can:
- One 2017 study found that access to information and resources, as well as social support, have an “ultimate impact” on health outcomes for parents with disabilities and their infants. After the 25 women in the study gave birth, the researchers say that “all participants were glad that they had borne their children and most felt that overall their pregnancy was a positive experience.”
- Several women in the above study also said that doing their own research helped them feel more comfortable. One parent said, “I got in contact with some women that have the same disability as I do, [so] I kind of went into it with knowing it was not going to be a typical pregnancy.”
- Hospital care coordinators and doulas can help you advocate for the care you deserve and feel confident asking questions.
2. Schedule a preconception appointment and consider getting a second opinion:
- Like we mentioned earlier, Dr. Harris says he always recommends that people meet with a provider for a preconception appointment before getting pregnant if they can — and we recommend the same thing here at Modern Fertility! “Discussing a birth plan early on will help you understand what your doctors are planning, and why," he explains.
- It can be difficult finding a doctor who understands both your unique pregnancy and disability experiences, so it’s possible you’ll need to seek out second opinions. “It’s not unusual for someone to have to meet with multiple different providers before they find someone they connect with, who explains things well, and who they feel has good knowledge of their situation," says Dr. Harris.
3. Work with specialists:
- Dr. Harris suggests having your full care team collaborate with your OB-GYN during pregnancy if any existing issues are exacerbated.
- Dr. Stamas, who is also the founder of Chelsea Method (an online postpartum physical therapy program), recommends that any person with a physical disability get care from a physical therapist throughout their entire pregnancy, or at least by the third trimester, to help them find the most comfortable ways to give birth. This care may include doing physical therapy focused on your pelvic floor or finding supportive birthing positions (like standing upright so gravity helps the baby descend, being on your hands and knees, and using special devices to help you keep your pelvis open).
As for online resources about sex, reproduction, and fertility, Dr. Piatt points to two helpful websites: Facing Disability, which is an informative platform for people living with spinal cord injury, and Sexuality After SCI, which specifically helps people with spinal cord injuries navigate relationships and sex. You can also check out the work of the experts we interviewed for this article here, here, and here.
Trying to conceive and then manage a pregnancy with a disability can be challenging — whether that’s due to related complications, social stigma, or experiences of medical bias. Wherever you are on your reproductive journey, we're here to help you navigate it all with our blog, the Modern Community, and through conversations with experts.
This article was medically reviewed by Dr. John Harris, MD, MSc, OB-GYN and Director of Center for Women with Disabilities at UPMC-Magee Women’s Hospital; and Dr. Temeka Zore, MD, FACOG, a fellowship-trained reproductive endocrinologist and infertility specialist and board-certified OB-GYN at Spring Fertility in San Francisco.