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Illustration by Marta Pucci

Cycle A-Z

Menstruating while disabled

by Clár McWeeney, Former Content Manager at Clue
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Women and people with cycles can face barriers to adequate healthcare, and having a disability can add another layer of difficulty.

Some people with disabilities face challenges in managing their health. Disabled people who menstruate often encounter obstacles in accessing sufficient support and services, which can put them at risk for more health problems.

For the purposes of this article, we’ll define disabilities according to the World Health Organization (WHO): “disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions.”

Having a disability can mean impediments to cognition, body function, and/or structure. It can also entail difficulties doing specific activities, or being in a life situation that affects functioning and/or mobility.

Some situations and environments are better equipped for people with disabilities than others. The WHO emphasizes that a disability is “the interaction between a person with health condition and personal/environmental factors”—like being in a wheelchair and facing inaccessible public transportation. Care and facilities for disabled people varies widely from country to country and region by region.

Some difficulties that are specific to both having a cycle and a disability are: handling tampons, pads, or menstrual cups (collection methods), menstrual awareness, and managing menstrual-related pain.

Managing periods while physically disabled

There’s a wide spectrum of physical disabilities, and individual abilities vary. Some examples of physical disabilities include cerebral palsy, multiple-sclerosis, limb amputation, visual impairment, and spinal cord injury.

Managing menstruation can be challenging for some people with limited hand function. Inserting and removing a tampon or menstrual cup may not be simple, or possible at all for some people.

Lauren Slattery, a Clue Ambassador, shared her experience:

“I have cerebral palsy, and use tampons with no issue. I just got a menstrual cup though and I’m worried about insertion and removal, since my muscular ability isn’t the best.”

The menstrual cup is becoming a more popular collection method for people who menstruate, as it’s reusable, sustainable, and can be worn for up to 12 hours. That means less waste, fewer trips to the bathroom, and money saved. But menstrual cups can be challenging to insert and remove—they need to be gripped and folded.

Menstrual cups come in many kinds and sizes, with different “stems”—the bit at the bottom of the cup you grab to help pull it out. Some people can insert and remove a menstrual cup with one hand. The effectiveness of a cup will depend on an individual’s ability, and the way the cup is built.

Jane Hartman Adamé, a woman with Ehlers-Danlos Syndrome, has designed the Keela Cup in an effort to make using a menstrual cup easier. Adamé’s inclusive menstrual cup has an adjustable pull-string stem and a soft base for an easy grip.

Tampons can come with or without applicators. Effectively inserting and removing a tampon (with or without an applicator) also depends on individual ability.

Period-proof underwear (like Thinx), pads, and disposable underwear are collection methods to consider—especially for people who don’t feel sensation below the waist, and can’t detect leaks.

Some people with visual impairments might mistake their period for vaginal discharge, especially if their cycles are irregular.* People with irregular cycles may not be able to predict as effectively when they will be getting their next period. Bodily symptoms of premenstrual syndrome—such as cramps, breast tenderness, or emotional changes—may also help to indicate to the person that the start of their period is approaching. Some people may have trouble telling if a pad or tampon needs to be changed.

Managing periods while intellectually disabled

An intellectual disability, according to the American Association on Intellectual and Developmental Disabilities, is characterized by limited intellectual functioning—learning, reasoning, problem solving—and behavior that affects daily skills. Some examples of intellectual disabilities include traumatic brain injuries (TBI) and Down syndrome.

Some people with intellectual disabilities have trouble understanding what goes on in their bodies (1). It’s important that intellectually disabled people have solid support and education to help them understand their biology. Check out the The Raising Children Network’s guide to teaching people with autism about menstruation.

Depending on cognitive ability, tampons and menstrual cups may not be the best collection methods, as they require keeping track of time and might be forgotten. Period-proof underwear, pads, and disposable underwear are worth trying.

The American College of Gynecology and Obstetrics (ACOG) has a guide to menstrual manipulation for people with disabilities. If menstruation is too challenging for a disabled person, menstrual manipulation can help alleviate issues through suppressing periods, or reducing the amount and days of menstrual flow. The goal should be to maintain the person’s rights and choices, while avoiding harm, and working within the scope of the patient's understanding of their reproductive health and cycle (3).

Sometimes in extreme cases, intellectually disabled people and/or their parent(s) or guardian(s) may consider medical procedures (stunting growth, hysterectomy, and/or sterilization) (2). These procedures are only considered after other reasonable alternatives have been pursued and are not recommended by ACOG (3). It’s important to remember that these operations do come with risks, and that these decisions are not made lightly (3).

Some parent(s) or guardian(s) of people with severe intellectual disabilities say that procedures that suppress menstruation are meant to improve the quality of life of their dependents who can’t process or tolerate menstruation-related symptoms (2).

If a person can’t consent to an optional medical procedure, it’s generally considered a human rights violation. A person with a severe intellectual disability (who has impaired capacity to consent) usually has a Person Responsible to make decisions about their health in their best interests (B). For more on this topic, check out a guide to informed consent in adults with intellectual disabilities by the Vanderbilt Kennedy Center, as well as this guide by the University of Hertforshire.

People's abilities vary. What’s beneficial for some people may not be useful for others. Some people may consider using hormonal birth control to reduce menstrual cycle symptoms or to skip periods.

Do you have a disability and a cycle, or care for somebody with a disability and a cycle? How do you help manage menstrual health and disabilities?

Track menstrual cycle symptoms in Clue.

*A Clue user with visual impairments wrote in to tell us that she has no trouble distinguishing her period from other fluids, and that the suggestion that people with impairments cannot tell the difference is offensive. She also wrote that in her experience, a more appropriate problem would be knowing when a pad or tampon needs to be changed, so we have added that additional information. The info presented in the section on visual impairments is anecdotal, and we’re grateful for feedback and to hear about your experiences. Send us your thoughts at hi@helloclue.com.

Edit: February 27,2018 We received thoughtful feedback from a user who suggested we not list autism as an intellectual disability, as it is manifested in broad and varied ways in individuals. We decided to take it out of the list of intellectual disabilities here.

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