There are doctors in Central Oregon Shelley Palmer will never go to again.
Palmer, 65, has multiple sclerosis that’s left her wheelchair-bound for the past three decades. She’s finally found doctors who are adept at treating patients with disabilities, but it wasn’t easy.
She’s been turned away because clinics didn’t feel comfortable transferring her onto an examination table. She’s been in rooms she wouldn’t be able to escape on her own if there were a fire. She’s been dressed by personnel who had never dressed a patient before.
And the Bend resident has been around plenty of doctors who didn’t know how to talk to a person with disabilities.
“I have no mental cognition problems,” she said,” but I was often treated as being less than intelligent and marginalized.”
Despite her struggles, Palmer gets regular cancer screenings, including mammography, although she realizes the barriers keep many individuals with disabilities, both physical and mental, from doing so. A project that’s just taking off in Oregon aims to change that.
State and national statistics show people with disabilities tend to receive cancer screenings at lower rates than those without disabilities. That, coupled with the fact that the roughly 50 million Americans with disabilities tend to have higher rates of cancer risk factors, such as smoking, poor nutrition and physical inactivity, puts them at a higher risk for developing cancer. Now, a project taking off in Oregon hopes to change that.
In Oregon, 69 percent of women with disabilities received mammograms in the past two years, compared with 74 percent of women without disabilities, according to 2012 data from the U.S. Centers for Disease Control and Prevention’s Behavioral Risk Factor Surveillance System.
Screenings for cervical cancer follow a similar trend, with 76 percent of women with disabilities having received the screening in the past three years compared with 81 percent of nondisabled women.
Screenings for colorectal cancer, by contrast, are actually higher among men and women with disabilities than among those without disabilities: 76 percent compared with 71 percent, according to the CDC data.
A handful of groups in Oregon that help individuals with disabilities live independently are teaming up, aided by a grant from Oregon Health & Science University’s Knight Cancer Institute, for a project they hope will help turn the trend around. It will work by training so-called peer support specialists, people whose own disabilities provide common ground with the organizations’ clients, to ask about cancer screenings and stress their importance.
Those behind the project recognize much of what keeps people from getting screened is the simple fear of having a bad experience or coming across a provider who isn’t educated on working with a patient with a disability.
“You’d think that they would, but some doctors are totally clueless and don’t know how to interact with somebody (who has an autism spectrum disorder),” said Greg Sublett, the director of operations and independent living for Abilitree, a Bend nonprofit that assists people with disabilities in achieving independence and one of the groups participating in the current project.
Angela Weaver, a project coordinator for the OHSU-based Oregon Office on Disability and Health and an academic collaborator on the project, said she used to work with a woman with a developmental disability who was deeply impacted by the experience of receiving her first mammogram.
“The radiologist was really rude to her and really hurt her feelings because she has a developmental disability and didn’t understand everything,” Weaver said. “She swore she would never get another mammogram because of that, and so she just never did.”
When the woman was in her early 50s, she felt a lump on the underside of her breast. By the time she saw a doctor, it was too late. She died within 18 months, Weaver said.
Learning about cancer screenings from someone who understands what it’s like to have a disability can make all the difference, Sublett said.
“It’s not that clinical model that says, ‘I have the education. Let me tell you how to live,’” he said. “It’s like, ‘You know, I’ve lived it. I’ve experienced it. Let me tell you my story.’”
Often, it’s logistical barriers that keep people out of the doctor’s office, whether they be inaccessible hallways or doorways or the difficulty of getting out of one’s wheelchair and onto a table. Many people are afraid of ending up in an uncomfortable or dangerous situation, such as being lifted onto an examination table by people who aren’t properly equipped to do so.
The project will kick off in Bend in May with the first training session, hosted by educators from the American Cancer Society, the breast cancer foundation Susan G. Komen and OHSU.
Once the peer support specialists are trained, they’ll take their message to every new person who makes contact with the organization, and those who return for services later on. All seven Centers for Independent Living in Oregon are participating in the project, but only three — including Abilitree in Bend — are reporting the number of people they talk to about cancer screenings to the Knight Cancer Institute.
In total, the project will likely touch somewhere between 700 and 800 people statewide during the year it takes place, said Barry Fox-Quamme, president of the board of directors for the Association of Oregon Centers for Independent Living, which oversees all seven CILs in Oregon.
Preventing a ‘double whammy’
Julie Merten, an assistant professor of public health in the University of North Florida Brooks College of Health, performed a literature review on 45 articles on the subject. In addition to the barriers mentioned, she found cost can keep people with disabilities from getting screened, as can depression, which tends to occur at higher rates among women with disabilities compared with women without disabilities. The study was published in January’s Disability and Health Journal.
Through her research, Merten said she was surprised at the level of provider discomfort she observed among the physicians she interviewed. Several said they were hesitant to bring up cancer screenings and risk factors when more pressing issues were discussed.
“They almost want to be gentle with them,” she said, “because they’re already bringing so much bad news and so many things you can and cannot do. The visits were already so disheartening sometimes that they didn’t want to add one more thing for them to have to consider.”
In Palmer’s experience, though, having a disability provides even more reason to get screened for cancer. Her MS symptoms, including weakness and fatigue, already bring her down. She’d prefer to nip a problem like cancer in the bud before it creates a “double whammy” that severely impacts her life.
The doesn’t mean getting a mammogram is a walk in the park. She likes the providers at Central Oregon Radiology Associates, who dismantle parts of her wheelchair and bring the machine down to her so she can stay in her wheelchair during the screening. But she still has to contort her body in an uncomfortable way to make sure there’s no cheek or elbow in the image.
It doesn’t get her down anymore, though. Palmer is confident, and she wants to help other patients with disabilities be confident, too.
“I’ve been at this game for quite some time,” she said.
— Reporter: 541-383-0304,