This story is based on interview excerpts of an upcoming episode of WXXI’s new Move to Include podcast on disability self-advocacy. The series launched on Jan. 12. Find it wherever you get your podcasts.
Jeiri Flores had been bleeding for about six weeks when she first saw a doctor about it.
She was about 30 years old at the time and her experience with doctors had been far from ideal.
Flores has cerebral palsy and uses a wheelchair, and she’d encountered healthcare practitioners who she said lacked an understanding of her condition, and of her humanity.
In this case, she was confronting a months-long medical mystery: an everlasting period and no end in sight.
“I had never had a Pap smear, never had a preventative care to my reproductive organs, because I could never find a gynecologist who had experience with disabled bodies,” Flores said.
She added that a common symptom of cerebral palsy is spasticity, which can cause stiff muscles and involuntary movement. According to the Cleveland Clinic, the most common type of cerebral palsy is spastic.
“So I can't just, you know, go to a free clinic, throw my legs up in stirrups and be like, ‘Do your best,’ right?” she continued. “Like, that's not what my life experience is like.”
The doctor, a primary care physician, prescribed one birth control medicine, and then another when the first wasn’t solving the issue. But the second medication brought on a deep sadness which led to isolation, and a weight loss of 20 pounds.
The doctor referred her to a gynecologist, she said, and she received a Pap smear, and was given an intrauterine device, or IUD. The bleeding resolved but the test came back abnormal.
“Which scientifically would make sense, because I was taking artificial hormones through birth control before the IUD,” she said, “But they were concerned about cancer.”
Research has shown that disability is not the sole determining factor for increased risk of cancer affecting female reproductive organs such as ovarian, uterine, and cervical cancers.
But research has also shown that physical and invisible barriers, like stereotypes and lack of knowledge, disproportionately affect disabled women's healthcare.
For example, a 2021 study published in the medical journal Cancer Control found that women with disabilities who have cervical cancer “were diagnosed at later stages, received less treatment, and had higher mortality rates, compared with patients who lacked disabilities.”
The authors of the study stated that social support, policies, and education “for women with disabilities, their families, and healthcare professionals, are needed to improve these disparities.”
Another review, published in by the American College of Obstetricians and Gynecologists in 2024, correlated a lack of training for partitioners on how to treat patients with disabilities with patients’ diminished quality of life. It called for establishing clear guidelines to improve patient outcomes.
For Flores, her experience serves as a kind of study, in the classroom of life, and she shares it to educate the people and practitioners she encounters.
Flores was next referred to an oncologist who worked in gynecology. But her relationship with the doctor deteriorated rapidly, she said.
The problems started the moment the doctor walked into the room, according to Flores.
"She looked at me, and she's like, ‘What do you think about children?’ And now, mind you, I just turned 30,” Flores said. “I just had this huge traumatic thing going on. I'm not thinking about kids at all.
“So she's like, I'm gonna give you some time to think about it. And so she walked out, and it's me and my mom, and we look at each other, and she's like, what's wrong with this lady? That was just ... such an awkward exchange.”
That’s when the doctor came back in, Flores said, “and she goes, I think you should have a hysterectomy.’”
It was as if the total picture of her life wasn’t considered, Flores said. Not the recovery from surgery, not the long-term hormone replacement that would be necessary afterward.
That visit was the last time Flores saw that provider, she said, and the doctor left a note in her chart stating that they could not have a therapeutic relationship.
The next doctor Flores saw determined that it wasn’t cancer.
But the note in her chart from the previous provider still hovered. Flores didn’t have the option to respond to it, so there wasn’t the opportunity to open up a dialogue, she said.
“I like to tell the stories that hurt, because it's important so that people remember it when they leave me, because I want the way you do business to change. I want you to be a better provider,” she said. “Because when your feelings hurt, you can change. You change the way you do business.”
