Community Spotlight: Cody Unser

Posted by Reeve Staff in Life After Paralysis on April 13, 2022 # Community Education

Cody UnserCody Unser knows firsthand how difficult it is for women with spinal cord injuries to successfully visit the doctor.

When she was 12, Unser developed a rare disorder called transverse myelitis that paralyzed her from the chest down. As she grew up in New Mexico, and later attended college in California and Washington, D.C., Unser struggled to find comprehensive obstetric and gynecological care. Her efforts were frustrated by an array of barriers, ranging from inaccessible offices and equipment to physicians who assumed that because she used a wheelchair, she did not have a normal sex life.

“I never had a good OBGYN experience,” Unser says. “I experienced both attitudinal and physical barriers. And, having been lucky enough to live all across the country, I knew it wasn’t an isolated problem.”

For decades, researchers have documented health disparities faced by women with disabilities, including lower screening rates for critical preventative services like mammograms, breast exams and pap smears. In addition to physical barriers, physicians’ perceptions of disability can also discourage women from seeking necessary care.

In a recent study published in the journal Health Affairs, of more than 700 practicing physicians surveyed, only 40.7 percent were “very confident about their ability to provide the same quality of care” to patients with disability; just 56.5 percent strongly agreed that they welcomed patients with disability into their practices.

Cody UnserFor Unser, who is a peer mentor and regular guest on Reeve Foundation health webinars, the inequity she experienced would eventually become the focus of her career. In 2015, after publishing an op-ed piece in U.S. News & World Report about her challenges seeking sexual and reproductive care, she began working to bridge the gap between women with disabilities and healthcare providers.

Raising awareness is a key part of Unser’s strategy to affect change: she has spoken at professional medical conferences; been interviewed on healthcare podcasts; and presented her program, titled “Wheelchair Barbie goes to the Gynecologist,” to medical residents at universities across the U.S.

Her message, she says, is simple—and long overdue.

“Instead of teaching physicians to cure us, we need to teach physicians to take care of us,” she says.

As a member of the American Spinal Injury Association’s primary care committee, Unser recently helped create a spinal cord injury resource list to educate doctors and improve care for people with disabilities. She is currently developing a conference about physical disabilities and healthcare challenges for medical professionals, with hopes of eventually creating a comprehensive course that can be taught in medical schools.

Cody Unser“No matter what field students go into, whether they want to be an OBGYN or a primary care doctor, they’re going to have patients with disabilities at some point,” she says. “They need to understand the scope of our lives and the secondary conditions we deal with on a daily basis so they can better care for us.”

Unser, the daughter of two-time Indianapolis 500 winner Al Unser, Jr. is fueled by a sense of urgency and the enthusiastic response she’s gotten from future doctors themselves.

“They tell me that this is needed in medical schools,” she says. “I realized I needed to work to create something more permanent, like Christopher Reeve created something that is concrete, that lasted and that still makes a difference. I’m determined to do this. And, I feel like, coming from a family of racers, I can win at the end and make a solid difference.”

Unser’s tips for navigating doctors’ visits and advocating for better care:

On-site access

“The main lesson I’ve learned is to call with questions before you make any appointment. Unfortunately, we can’t assume that accessibility is universal,” she says

Unser recommends asking not only about access to the building, but inside the office itself. Are the hallways wide enough? Is the reception desk low enough to offer privacy for wheelchair users at check-in? Do bathrooms have support bars? Will the appointment allow for extra time that a woman with mobility challenges might need?

The biggest barrier may be accessing the examination table itself. Many offices lack height adjustable tables but are equipped with a lower table used for general procedures. Unser requests that her exam takes place in this procedure room so that she can more easily access the table independently. When this is not an option, she suggests a family member, friend or caregiver accompany a woman with a disability to the appointment to help with the transfer.

Communication

Women living with paralysis need to advocate for themselves. Be clear and detailed about medical history; the more women share, the more they can get out of the appointment. Outline what is needed and don’t hesitate to ask questions.

Women who experience spasms should explain this to the provider and staff; gradual repositioning of legs and gentle stretching may help during the exam. Ask for a nurse to stand alongside the table to prevent a fall should spasms occur.

If necessary, educate providers about autonomic dysreflexia (AD), which can be triggered by the exam. A free Reeve Foundation AD wallet card can be shared with medical staff unfamiliar with the condition.

Sexual health

“Women should not be afraid to ask questions about sex,” Unser says. “I have osteoporosis. I can break a bone during sex. I need to be able to talk about these issues with my doctor.”

Sexual health is an important aspect of any woman’s life, including those living with disabilities. Intimacy can be more complicated: newly injured women must navigate the mechanics of a paralyzed body; bladder and bowel management must be considered ahead of time, limiting spontaneity; and certain medications may cause vaginal dryness. In her visits to residency programs, Unser urges doctors not to make assumptions about the sex lives of women with disabilities who need —and deserve– the same access to conversations about health, sexuality, and reproductive counseling and family planning as other patients.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.