Managing Periods Isn’t Accessible Enough For Everyone

When Erin* left her home on the East Coast to attend a university on the West Coast, she matched with an older student mentor as part of a program to support students with disabilities. They discussed the caregiving needs Erin would have as a person with a form of cerebral palsy who uses a wheelchair. The other student, who also had a disability, broached the subject of menstruation.

The student mentor suggested that Erin would retain caregivers more easily if she started taking the Depo-Provera birth control injection to reduce the frequency of her periods and, therefore, the amount of hygienic and toileting care she would need. At the time, Erin had just turned 19 years old, lacked severe pain or other menstrual health issues that would require birth control medically, and was not sexually active or in need of pregnancy prevention. The encouragement to use contraception was essentially so she’d present less of a “maintenance issue,” Erin says, prioritizing the caregivers’ preferences instead of her own needs.

Erin’s story is one of many similar ones from people with disabilities: There are approximately one billion people worldwide who have some form of disability, and women and girls are 19 percent more likely to be disabled, according to UNICEF statistics. Some health conditions that affect the menstrual cycle and cause severe pain and other side effects, such as endometriosis, can also be considered disabilities. Between 110 and 190 million people with physical and intellectual disabilities require assistance from caregivers to manage their needs, including menstruation; there is no standard guidance or training for these care workers in assisting with menstrual hygiene.

Even if people with disabilities don’t require physical assistance for menstruation, managing their periods can be a struggle physically, with a lack of a full range of products designed for all different bodies and needs. It can also present financial strain, since many people with disabilities use social support systems and are at higher risk of experiencing period poverty. With all of these factors in mind, disability and menstrual activists share why menstruators with disabilities should be centered in the larger menstrual justice movement.

Why Is There a Menstruation Phobia Around People With Disabilities?

Erin experienced what she calls “menstruation phobia” during her college episodes of being advised to eliminate her period. “It’s just another manifestation of the frustration that particularly women with disabilities, but people with disabilities more broadly, face from the non-disabled community — that our bodies can’t be controlled,” she tells PS. There’s an apparent revulsion toward people who require assistance with tasks such as getting dressed and using the bathroom, and tasking caregivers to manage menstruation is seen as “too much,” she adds. It contributes to a power imbalance between the caregiver and the person receiving care.

But phobia around managing menstruation doesn’t only affect the disability community — it reflects a pervasive fear of menstrual blood, and people not wanting to see or hear about it. This aversion is rooted in fear of the unknown, says Chelsea Von Chaz, a period doula and CEO and founder of the menstrual education organization #Happy Period. The default to managing issues with menstruation among medical professionals is often to treat the problem with birth control, even if the patient is experiencing period pain or other symptoms a broader health condition might explain. It’s another method of controlling the menstruating body instead of better understanding it, adds Von Chaz.

Cal*, who has a spinal cord injury and is also transgender, experiences doctors who often treat his menstrual health questions as “too tough” of a case. “Many doctors were surprised at how menstruation and spinal cord injuries can affect each other, especially with cramping and pain increases, or inflammation causing additional spinal or nerve pressure,” Cal says. “I had to figure this out through non-medical menstrual educators or my own research, before being offered support or understanding on this from a medical professional.” Doctors were at a loss for how to “control” Cal’s menstruation as a transmasculine person and a person with disabilities — they even suggested that taking testosterone to transition “messed up” his body and was a cause of his disabilities.

How People With Disabilities Have Had Their Bodily Autonomy Dismissed in the Past

There’s a long history of attempting to make the health needs of people with disabilities invisible. From the middle of the 19th century onward, “ugly laws” existed in the US and criminalized the disability community. People with visible disabilities were prohibited to be seen in public, especially begging for money, explains Prianka Nair, assistant professor of law and director of the Disability and Civil Rights clinic at Brooklyn Law. “This removal of people from the community and placement in institutions was couched in ‘care,'” Nair says, and factors into why society doesn’t universally accept people with disabilities exercising their sexual and reproductive rights.

Reproductive injustice and rights discrimination are a crucial concern for her legal clients with physical and intellectual disabilities.

The roots of controlling and institutionalizing people with disabled bodies continues today in myriad ways. “I’ve found in my own life and with my disabled friends, we’re treated as ‘too much’ for most of society, even for caregivers,” says Cal. “So when we have another normal bodily function like menstruation, it’s viewed as an additional burden to get rid of.” Cal and Erin both emphasize that people with disabilities tend to be infantilized, perceived as asexual, and discouraged from reproducing or being parents. They’re frequently coerced into using contraception, since menstruating regularly doesn’t seem necessary if reproduction isn’t on the table. People with disabilities often don’t get to make any sexual and reproductive decisions themselves — and that’s the issue.

What Needs to Change For Better Menstrual Accessibility

A lot can be done to improve menstrual accessibility for those within the disability community — from the actual providing of products to more frequent conversations around period equity. Here’s a start:

Given the financial needs of people with disabilities and rampant period poverty in the U.S. generally, having free (no coin dispensers) products available in all different types of public buildings should be a no-brainer, says Von Chaz. Many people who menstruate are not the ones making these types of decisions, so period products are not prioritized. “If we can provide toilet paper, we can provide tampons and pads for free, and if we can make adjustments to provide hand sanitizer, we can afford this,” she says. In a school setting, for example, there should be multiple places to access pads, and not just hidden in a school nurse’s station.

Product innovation should be more universally accessible.

Few developments in the menstrual product space increase accessibility, like TINA’s tampon insertion aid and lingerie brand Liberare’s adaptive period underwear, so there’s a considerable dearth of product innovation. Plus, 86 percent of disabled people state that there’s significantly less funding for startups founded by people with disabilities, often the only people who are innovating in this space. With proper funding, future improvements in menstrual technology could include products that address the needs of people with hand tremors or tics as well as folks who have severe chemical or adhesive allergies, Cal suggests.

While developing the TINA device, founder Ali Mackanic heard from women with spinal cord injuries who had difficulty inserting tampons, detailing that the advice they received from doctors was essentially to “wear a pad or get a hysterectomy.” Universal design principles could be applied in menstrual product design that recognize that people with disabilities are not a monolith. Designing products and spaces for everyone, while including and centering people with disabilities, can be universally beneficial, says Nair. For example, the TINA insertion aid device can be helpful for people with limited spinal cord mobility, dexterity, or grip strength, and it can make tampons easier to use for anyone who has difficulty with insertion due to their body shape.

Incorporate more physical changes in public restrooms.

Most public restrooms are often not designed to accommodate people with disabilities, beyond bearing one oversized stall that’s usually occupied and lacking toilet paper. One basic improvement: placing trash cans in every stall, regardless of the gender identity corresponding with the restroom, especially since people with digestive disabilities may need to use the closest restroom at any point in time, Cal suggests.

Cal also encourages trash cans to be installed toward the front of a stall and not in the back or behind a toilet. “Many people with spinal injuries or limited mobility can’t turn or twist, meaning I have to find a way to hold a product to dispose until I can stand up and turn to access the trash. This also risks getting my cane a little messy,” they tell PS.

More period advocacy conversations need to include people with disabilities.

In her menstrual education and equity work, Von Chaz says she rarely sees any space given to folks with disabilities, and they deserve a seat at the table. “I’m tired of talking about period poverty without mentioning people with disabilities — and the issue is exacerbated if you’re Black or identify as LGBTQIA+,” she states. The invisibility extends from advocacy spaces to the marketing of period products and public conversations.

People with disabilities, including endometriosis and uterine fibroids, are not represented in ads or conversations. Beyond not even showing real blood in many TV commercials, marketing doesn’t normalize the full range of experiences of menstruators, including being transgender or using a wheelchair, adds Von Chaz. As with everything else, inclusive and accurate representation matters.

Consciousness needs to evolve from centering caregivers and society’s comfort level toward disabled people’s actual needs.

The world is structured around people who are non-disabled, so it’s common for caregivers and support staff to assume that they have a better sense of how to provide care or medical services than people who have disabilities. “It goes back to the unruliness or unpredictability of bodies with disabilities, which inherently makes them annoying at best, and repulsive at worst — especially people who depend on caregivers for access needs,” says Erin. This inherent programming results in deference to caregivers and disabled people regulating their own bodies to make sure they aren’t “too much” in any capacity: Erin was mindful not to drink too many fluids in college, because caregivers potentially would not show up the number of times she needed to use the bathroom.

Recipients of care should be centered, not shamed, and thinking should shift from characterizing caregivers as “morally superior” or “heroic” and people with disabilities as needing to be “saved.” Anyone who is working in the reproductive rights space or any workplace should ensure that people with disabilities — and their wheelchairs if needed — have a seat at the table to voice their perspective and needs without a colleague or friend ultimately deciding what’s best for them. “Just as everyone else should have agency over their bodies, so should we. Our choices about our own bodies should not be influenced by pleasing or appeasing anyone else,” Erin says.

Instead of deferring to caregiver preferences or to society at large, respect the care recipient’s needs. “It sounds like common sense, but try asking them,” Erin says. “Try asking the person with a disability what they need, or what menstrual products they like to use, or whether or not they would like to go on birth control, or what their reasoning is for any of those things.”

Editor’s note: *Last name is redacted to protect privacy. Most people quoted in the story use she/her pronouns, but Cal uses he or they pronouns.

Mara Santilli is a PS contributor, freelance writer and editor specializing in reproductive health, wellness, politics, and the intersection between them, whose print and digital work has appeared in Marie Claire, Glamour, Women’s Health, SELF, Cosmopolitan, and more.