Women with disabilities face a variety of challenges when it comes to accessing reproductive services like birth control and prenatal care. According to a new landmark study, women who are deaf or hard of hearing are far more likely than hearing women to become unintentionally pregnant and are less likely to get their first choice of birth control from their health-care provider.

“I know that it is difficult to find providers who understand my experiences not just as a woman, but as a deaf woman,” said Tiffany Panko, director of the Rochester Institute of Technology’s Deaf Health Laboratory.

In Panko’s experience, she said, providers have often misunderstood her or made incorrect assumptions about what she wanted or needed. So she sought to find out about others’ experiences.

Along with then-colleague Corrine Occhino, who is now at the University of Texas at Austin, they conducted the first national survey of women who are deaf and hard of hearing on their pregnancy and reproductive health-care experiences.

In the early stages of their research, which began in early 2020, Occhino said they found that much of the feedback they gathered from members of the deaf community related to not having access to their preferred form of communication in medical appointments.

For someone who uses American Sign Language, Occhino said, if they aren’t able to access that, it’s harder for them to be fully informed and present in a conversation with a health-care provider.

Linguistically, Occhino said, ASL is an entirely different language from American English, with its own distinct structure and nuances. According to the National Institute of Deafness and Other Communicative Disorders, similarly to how English words are spoken differently in different parts of the country, ASL has regional variations in the rhythm of signing, pronunciation, slang, and signs used.

Instead of using changes in pitch when asking questions, ASL users ask questions by raising their eyebrows, widening their eyes, or tilting their bodies forward. Because of these differences, providing accessible care isn’t as simple as providing information on birth control methods in English.

Just as with other “second-language learning populations, providing people access to English learning material isn’t necessarily the answer, because there is a language barrier,” Occhino said.

This challenge is present in all health-care encounters. According to a 2019 study published in the Journal of Medical Internet Research, deaf individuals often struggle to obtain, read, understand, and use health-care information, and to make appropriate and informed decisions as a result, when compared to their hearing peers.

That study surveyed 450 deaf individuals and 450 hearing native English speakers between the ages of 18 to 70. The researchers found that the average deaf individual reads English at the fifth- to sixth-grade level; by contrast, the average American reads at a seventh- to eighth-grade level. The study also found that approximately 95 percent of deaf individuals have hearing family members who do not sign.

Additionally, the research found that many deaf individuals experience “dinner table” syndrome, which means deaf individuals often miss out on incidental learning opportunities that would be heard during meals with family and friends.

Funded by the Society of Family Planning, a research fund that provides support for abortion and contraception research, Occhino and Panko have spent the past two years surveying over 100 members of the deaf community, conducting in-depth interviews with deaf and hard of hearing women to gather more detail on their experiences and learn what women hoped would have happened in their interactions with health-care providers. They presented their findings at the American Public Health Association’s annual meeting in November 2022; the research is expected to be published sometime during the upcoming academic year.

Occhino said some of the biggest emerging trends their study has found relate to how deaf and hard of hearing individuals prefer to communicate during medical appointments.

“Some people really want to have an ASL interpreter there,” Occhino said. “Other people feel like they don’t want that third party in this very private meeting space.”

Because of the differences in communication with health-care providers, including written communication, ASL interpreters, and lip reading, many women do not have access to their preferred mode of communication.

The researchers found that overall, deaf and hard of hearing individuals tend to have lower levels of health literacy. In other words, the degree to which deaf and hard of hearing women are able to find, understand, and use information to inform their health-related decisions is less than that of hearing individuals.

Occhino and Panko’s preliminary data was collected from a survey of 145 participants; 89 percent identified as women and 55 percent identified as deaf or hard of hearing.

The data compared the experiences of deaf and hard of hearing participants and hearing participants to evaluate their use of contraception, preferred method of contraception, and when or why they could not access their first choice of contraception.

They found that the most common methods of contraception for both groups were IUDs and contraceptive pills. However, 31 respondents reported not being on any contraception because they were not able to access their desired method.

Of those 31 respondents, six deaf and hard of hearing participants reported that they did not know why they could not access their preferred method as opposed to two hearing respondents.

Of the concerns that come with not being able to access their desired method of birth control, in a 2019 study published in the American Journal of Preventive Medicine, researchers found that deaf and hard of hearing women are at a higher risk of chronic conditions and pregnancy-related complications, including preeclampsia, eclampsia, placental abruption, and gestational diabetes. They are also more likely to have adverse birth outcomes, including preterm birth, low birth weight or very low weight, and low Apgar scores.

While this 2019 study focused on the disparities in pregnancy complications and birth outcomes among deaf and hard of hearing women, Occhino and Panko’s study helps to elaborate on this nuanced topic and understand the experiences that these women have had in health-care settings and family planning situations.

Occhino said she hopes their research can help shift attitudes toward deaf culture in the hearing community, which tends to “see it as a disability, and not as a culturally important thing.”