At her home in Ypsilanti, Michigan, Barbara Mead said, “There are walkers, wheelchairs, oxygen and cannulas everywhere.”
82-year-old Barbara has chronic obstructive pulmonary disease, so a portable oxygen tank accompanies her everywhere. Spinal stenosis limits her mobility, requiring a walker and wheelchair, as well as significant assistance from her husband, Dennis, who is her primary caregiver.
“I know I need hearing aids,” Barbara added. “I have terrible hearing.” She bought a pair a few years ago but rarely uses them.
Dennis Mead, 86, is more mobile despite pain in one knee due to arthritis, but has trouble hearing. Equally dissatisfied with the hearing aids he once bought, he said, “I just got to the point where I said, 'Speak up.'”
But if you ask any of them the question included in a recent University of Michigan survey: “Do you consider yourself disabled?” – The foreign ministers immediately answer: No, they don’t.
Disability “means you can't do anything,” Dennis said. “As long as you can cope with it and it doesn’t affect your life too much, you don’t consider yourself disabled.”
Their daughter Michelle Mead, an occupational psychologist and director of the university's Disability Health and Well-Being Center, accompanies her parents to doctor's appointments and tends to roll her eyes when they are reluctant to acknowledge the need for support.
Working with other researchers on a recent national survey, she showed how often older people feel they are not disabled, despite ample evidence to the contrary.
I looked at the survey nearly 3,000 Americans aged 50 and older and found that only a minority—less than 18% of participants over 65—considered themselves disabled.
However, their reaction to six questions The data the U.S. Census Bureau uses to track disability rates tells a different story.
The survey asks whether respondents have trouble seeing or hearing, difficulty walking or climbing stairs, difficulty concentrating or remembering, trouble getting dressed or bathing, difficulty doing work, or trouble leaving the house.
About a third of people aged 65 to 74 reported difficulty with one or more of these functions, according to a university survey. Among people over 75 years of age, this figure was more than 44%.
Moreover, when respondents were asked about several additional health conditions that would require accommodations under the Americans with Disabilities Act, including breathing problems or speech impairments, the proportion rose even higher. Half of the group aged 65 to 74 reported a disability, as did about two-thirds of people over 75.
However, only a small proportion—less than 1 in 5—of older adults ever receive from their health care providers the accommodations to which they are legally entitled under the ADA.
Even among the small minority who identified as disabled, only a quarter applied for accommodation (although a third received it whether they asked or not).
“This is a familiar story,” said Megan Morris, a rehabilitation researcher at NYU Langone Health and director of the Disability Equity Collaborative. When it comes to how people describe themselves, “a lot of people still think the word 'disability' is a dirty word,” she said.
Michelle Mead added that refusing to ask for help is almost an American value, even when the law requires it to be available. When faced with disability, she said, “we have to get tougher and fight it.”
This may be especially true of older Americans, whose views were formed before the landmark ADA became law in 1990, or even before the passage of the 50-year-old Individuals with Disabilities Education Act, which guaranteed access to public education.
“It’s going to be tough for the older generation,” Morris said. “Disability was something that was locked away. Young people are more open to seeing disability as part of the community.”
For example, among people over 65 who have two or more disabilities, about half identified as having a disability, according to a University of Michigan survey. In the younger cohort aged 50 to 64 years, the figure was 68%.
Why does this matter? “It helps a lot in health care settings if you report a disability and know to request accommodations and supports,” said Anjali Forber-Pratt, director of research for the American Association on Health and Disability.
Such adaptations “can make a stressful situation easier,” she added. They include mammography and X-ray machines that allow patients to remain seated, scales that people in wheelchairs can ride on, and examination tables that raise and lower so patients don't have to stand on a footstool and turn around.
Health care providers may also offer amplification devices for people with hearing loss, as well as magnifiers and large print materials for the visually impaired. The buildings themselves must be accessible. Practices may send a staff member in a wheelchair to help patients walk long distances.
Even with a handicap parking sign, “you get in, wait for the elevator, go to the office,” said Emmy Poling, 75, a retired teacher in Menlo Park, California.
Because of arthritis and spinal stenosis, she said, “I can’t walk upright for more than a few minutes” without pain. “I basically live on Tylenol.” However, when she makes an appointment and the scheduler asks if she will need help, Pauling says she won't.
“My personal voice says, ‘Come on, you can do this,’” she said.
There are other benefits to identifying as a person with a disability, advocates say. That may mean avoiding isolation and “being part of a community of people who are good problem solvers, who understand everyone, and who work in partnership to achieve more,” Meade said.
Government programs and private organizations such as National Disability Rights Network, National Americans with Disabilities Act NetworkAnd National Association of Development Councils help people access services and support in their communities.
Several studies have also shown that patients who identify as disabled have less depression and anxiety, higher self-esteemand a greater feeling”self-efficacythan disabled people who don't.
For years, despite surgeries for a congenital dislocated hip, as well as joint replacements and cancer treatments, Glenna Mills, an artist from Oakland, California, told herself she was not disabled.
“I suffered a lot, denying that I couldn’t walk very far,” she recalled. Although walking hurt her knees, hips and shoulders, “I didn't want people to see me as someone who couldn't keep up,” she added.
But about 10 years ago, “I stopped worrying about it,” Mills, 82, said. “I was more inclined to say, ‘I can’t do this. I can't walk that far.” She bought a scooter, which allowed her to walk with her husband and dog, and also spend time in museums. “I'm happier now,” she said.
More often than not, older Americans resist a label that could help improve their care. Even those who do request accommodations may find that compliance with the ADA remains uneven, in part because patients do not always report violations.
The Meads, after years of coaxing from their children, made an appointment with an audiologist about new hearing aids.
But Pauling intends to fight on, without asking for help or accepting it. “I know this moment will come,” she said. “I will try to surrender as gracefully as possible, given my character.”
Until then, she said, “the mental picture that's acceptable to me is that I don't want to look disabled.”
The New Old Age is created in collaboration with New York Times.
KFF health news is a national newsroom that produces in-depth journalism on health issues and is one of the core operating programs of KFF, an independent source of health policy research, polling and journalism. Find out more about KFF.
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