“There are walkers, wheelchairs and oxygen everywhere,” says Barbara Mead, at her home in Michigan (USA).
She is 82 years old and suffers from chronic obstructive pulmonary disease. A portable oxygen tank accompanies her everywhere. Spinal stenosis limits her mobility, requiring walkers and wheelchairs, as well as significant assistance from her husband, Dennis Meade, who serves as her primary caregiver.
“I know I need hearing aids. My hearing is very bad,” she adds. She bought a pair a few years ago but rarely uses them.
Dennis, 86, is more mobile. Despite the arthritis pain in one knee, the main thing is his hearing problems.
But if you asked them the question included in a recent University of Michigan survey — “Do you consider yourself to have a disability?” Medes responds immediately: No.
“A disability means you can’t do things. As long as you can handle it and it doesn’t affect your life too much, you don’t consider yourself disabled,” Dennis says.
Their daughter, Michelle, a rehabilitation psychologist and director of the university’s Center for Disability Health and Wellness, accompanies her parents to doctor’s appointments and draws her attention to their reluctance to acknowledge their need for support.
Working with other researchers, I realized how often older people feel they are not disabled, despite abundant evidence to the contrary.
The survey included nearly 3,000 Americans ages 50 and older and found that less than 18 percent of participants over age 65 considered themselves disabled. However, their answers to the six questions the survey uses to track disability rates contradict that.
The study asks whether participants have difficulty seeing, hearing, walking, or climbing stairs; Difficulty with concentration or memory. Problems dressing or bathing. Difficulty working or problems leaving the house.
About one-third of people ages 65 to 74 report difficulty with one or more of these functions. Among people over 75, the proportion was more than 44%.
Furthermore, when asked about several additional health conditions that might require accommodations under the Americans with Disabilities Act, including respiratory problems or speech disorders, the percentage rose even higher. Half of the 65-74 age group reported a disability, as did about two-thirds of people over 75 years of age.
However, only a small percentage – less than one in five – of seniors received housing from health care providers, which is a legal right. Even among the minority identified as disabled, only a quarter requested accommodation.
“When it comes to how people describe themselves, many still feel disability is a dirty word,” says Megan Morris, a rehabilitation researcher at NYU Langone Health.
Michelle adds that refusing to ask for help is almost an American value, even when the law requires it to be available.
This may be true among older Americans whose attitudes were formed before this legislation was passed in 1990, or even before the passage of the Individuals with Disabilities Education Act, which is fifty years old and guarantees access to public education.
In research conducted by the University of Michigan, for example, among people over 65 with two or more disabilities, about half identified as people with disabilities. Among the youngest, between the ages of 50 and 64, the percentage reached 68%.
“It’s very helpful in health care settings to disclose your disability and know how to ask for accommodations and support,” explains Anjali Furber-Pratt, director of research at the American Association on Health and Disability. “Such facilities can make a stressful situation easier,” he adds.
They include mammograms and X-ray machines so patients remain seated and scales that wheelchair users can climb on, for example.
Health care providers may also offer amplification devices to people with hearing loss. The buildings themselves must be accessible.
“Even with a handicapped parking pass, you wait for the elevator, and you walk to the office,” says Amy Bowling, 75, a retired teacher in Menlo Park, California.
“Due to arthritis and spinal stenosis, I cannot walk upright for more than a few minutes without pain,” she says. However, when she makes an appointment and is asked if she needs help, Bowling says no.
“Identifying yourself as a person with a disability provides other benefits,” advocates say. It can mean avoiding isolation and being part of a community of people who are good problem solvers, who figure things out and work together to make things better, says Michelle Mead.
Several studies have also found that patients who identify as disabled have less depression and anxiety, higher self-esteem, and a greater sense of self-efficacy than people who do not identify as such.
For years, despite lifelong surgeries for congenital hip dislocation, as well as joint replacements and cancer treatment, Glenna Mills, 82, an artist from Oakland, California, told herself she was not disabled. “I suffered a lot because I denied that I couldn’t walk long distances,” he recalls.
“About 10 years ago, I stopped worrying about it,” he says. She bought a motorcycle that allowed her to hike with her husband and dog and spend time in museums. “I’m much happier now,” he says.
Too often, older Americans resist classification that could help improve their care. The Meads, after years of pleading from their children, made appointments to see an audiologist about their new hearing aids.
Boling, on the other hand, intends to continue fighting without asking or accepting help. “I know that moment will come,” she said. “Until then, the acceptable mental image for me is that I don’t want to look like I’m disabled.”