Young women with 'invisible' disabilities share their stories

Arizona State University Associate Professor Heather Switzer and alumna Anastasia Todd are using the power of narrative to break the current framework of what it means to be a young woman with a disability.

Their research project, titled “You can’t see it, but I’ve got a lot of s--- going on”: Young Women, Invisible Disability and the Paradox of Passing, has found that young women with “invisible” disabilities are often dismissed. Their disabilities are deemed less valid than other disabilities that people can see.

Switzer is an associate professor of women and gender studies at ASU, whose research focuses on the cultural constructions of girlhood in different places throughout the world.

Todd graduated from ASU with a doctorate in gender studies in 2016. She is currently an assistant professor of gender and women’s studies at the University of Kentucky. 

Switzer and Todd met serendipitously when Todd took Switzer’s undergraduate course, Girlhood and Adolescence. Later, Switzer would become Todd’s adviser and co-chair of her doctoral dissertation.

Just five years after the two first met, Switzer shared a peer-reviewed article by Todd in her Girlhood and Adolescence course. The article, on disabled girlhood, caused a reaction in Switzer’s classroom that she had not seen before. 

“My students were a bright and talkative group, and when one young woman raised her hand and started, ‘I don’t usually tell people this, but I have an anxiety disorder…,’ before I realized what was happening, another followed,” said Switzer.

One by one, several girls shared the conditions they were dealing with on a daily basis — conditions that were invisible and that they actively hid so they could appear “normal” to others.

Switzer knew she had to talk to Todd about what she had seen.

“We decided to put our skills together,” said Todd. “We are both interested in cultural narratives and gendered bodies as cultural forms. I specifically have the background in feminist disability studies and affect theory, and Heather has qualitative research design and interviewing experience.”

Together, they were a perfect team to conduct a study on the intersection of invisible disability and young womanhood.

As part of their research, Switzer and Todd have interviewed over 40 undergraduate young women between the ages of 18 and 24 with disabilities such as lupus, Ehlers-Danlos syndrome, bipolar disorder, fibromyalgia, endometriosis, chronic fatigue syndrome, thyroid conditions, anxiety, depression and post-traumatic stress disorder.

These disabilities, though unseen, have significant physical and emotional effects.

But due to the cultural experiences participants in the study had faced, many felt they were not “disabled enough” to receive any accommodations or assistance. 

“Every single one of our participants expressed that at one point or another they felt that their disability was dismissed or under suspicion because of their gender and age,” said Todd.

Young women shared that they were dismissed or not believed by peers, family members, doctors and professors.

“This project has brought to stark relief what I have always known but maybe not ever deeply enough,” Switzer said. “As teachers, we have no idea what our students are going through, and gender, race, sexuality, citizenship status and class have tremendous bearing on the experience of disability, invisible and visible.”

Despite current misconceptions, young women with invisible disabilities deserve the same access to accommodation granted to those with disabilities that are perhaps, because of cultural norms, easier to identify and understand. 

Switzer and Todd have collected the narratives of their participants in order to shift the culture surrounding disability.

“The overarching goal of our project is to intervene in how our culture imagines disability — as something that is unchanging, physical and visible — and share the narratives of young women who do not fit into that preexisting framework,” Todd said. “Our project values the narratives of young women who manage a multitude of invisible disabilities and brings these narratives forward in order to create an alternative imagining of disability.”

The narratives that they’ve collected help broaden the meaning of disability — as an experience that can change day to day, and as something that you can’t always see.

These stories will help young women with invisible disabilities start to understand that their conditions are valid as well as help others know that their disabilities are real.

That way, young women with invisible disabilities will start to feel comfortable asking for the help and support that they need and have a right to. 

This research project has been supported by funding from the ASU Institute for Humanities Research, the women and gender studies program at ASU, and the Department of Gender and Women’s Studies at the University of Kentucky.