In her house in Ypsilanti, Michigan, Barbara Meade said, \u201cthere are walkers and wheelchairs and oxygen and cannulas all over the place.\u201d<\/p>\n
Barbara, 82, has chronic obstructive pulmonary disease, so a portable oxygen tank accompanies her everywhere. Spinal stenosis limits her mobility, necessitating the walkers and wheelchairs and considerable help from her husband, Dennis, who serves as her primary caregiver.<\/p>\n
\u201cI know I need hearing aids,\u201d Barbara added. \u201cMy hearing is horrible.\u201d She acquired a pair a few years ago but rarely uses them.<\/p>\n
Dennis Meade, 86, is more mobile, despite arthritis pain in one knee, but contends with his own hearing problems. Similarly dissatisfied with the hearing aids he once bought, he said, \u201cI just got to the point where I say, \u2018Talk louder.\u2019\u201d<\/p>\n
But if you ask either of them a question included on a recent University of Michigan survey \u2014 \u201cDo you identify as having a disability?\u201d \u2014 the Meades answer promptly: No, they don\u2019t.<\/p>\n
Disability \u201cmeans you can\u2019t do things,\u201d Dennis said. \u201cAs long as you can work with it and it\u2019s not affecting your life that much, you don\u2019t consider yourself disabled.\u201d<\/p>\n
Their daughter Michelle Meade, a rehabilitation psychologist and the director of the Center for Disability Health and Wellness at the university, accompanies her parents to medical appointments and tends to roll her eyes at their reluctance to acknowledge needing support.<\/p>\n
Working with other researchers on the recent national poll has shown her how often older adults feel that they are not disabled despite ample evidence to the contrary.<\/p>\n
The survey looked at<\/a> nearly 3,000 Americans aged 50 and older and found that only a minority \u2014 fewer than 18% of participants over 65 \u2014 saw themselves as having a disability.<\/p>\n Yet their responses to the six questions<\/a> that the Census Bureau\u2019s American Community Survey uses to track disability rates told a different story.<\/p>\n The survey asks whether respondents have difficulty seeing or hearing, limitations in walking or climbing stairs, difficulty concentrating or remembering, trouble dressing or bathing, difficulty working, or problems leaving the home.<\/p>\n In the university\u2019s survey, about a third of those aged 65 to 74 reported difficulty with one or more of those functions. Among those over 75, the figure was more than 44%.<\/p>\n Moreover, when respondents were asked about several additional health conditions that would require accommodations under the Americans With Disabilities Act, including respiratory problems or speech disorders, the proportion climbed even higher. Half the 65-to-74 group reported disabilities, as did about two-thirds of those over 75.<\/p>\n Yet only a sliver \u2014 fewer than 1 in 5 \u2014 of older adults had ever received an accommodation from their health care providers to which they are legally entitled under the ADA.<\/p>\n Even among the small minority who identified as disabled, only a quarter had asked for an accommodation (though a third received one, whether they asked or not).<\/p>\n \u201cIt\u2019s a familiar story,\u201d said Megan Morris, a rehabilitation researcher at NYU Langone Health and director of the Disability Equity Collaborative. When it comes to the way people describe themselves, \u201cmany people still feel like \u2018disability\u2019 is a dirty word,\u201d she said.<\/p>\n It\u2019s almost an American value to decline to seek help, even when the law requires that it be available, Michelle Meade added. Faced with a disability, she said, \u201cwe\u2019re supposed to toughen up and battle through it.\u201d<\/p>\n That may be particularly true among older Americans whose attitudes formed before the landmark ADA became law in 1990, or even before the 50-year-old Individuals With Disabilities Education Act, which guaranteed access to public education.<\/p>\n \u201cIt\u2019s going to be hard for that older generation,\u201d Morris said. \u201cDisability was something that was locked away. Younger folks are more open to seeing disability as being part of a community.\u201d<\/p>\n In the University of Michigan survey, for instance, among people over 65 who had two or more disabilities, about half identified as a person with a disability. In the younger cohort, aged 50 to 64, it was 68%.<\/p>\n Why does that matter? \u201cIt greatly assists in health care settings if you disclose a disability and know to request an accommodation and support,\u201d said Anjali Forber-Pratt, the research director at the American Association of Health and Disability.<\/p>\n Such accommodations \u201ccan make a stressful situation easier,\u201d she added. They include mammography and X-ray machines that allow patients to remain seated, scales that wheelchair users can roll onto, examination tables that rise and lower so that patients don\u2019t have to step onto a footstool and swivel around.<\/p>\n 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. Buildings themselves must be accessible. Practices can send a staff member with a wheelchair to help patients traverse long distances.<\/p>\n Even with a disability parking placard, \u201cyou hike in, you wait for the elevator, you hike to the office,\u201d said Emmie Poling, 75, a retired teacher in Menlo Park, California.<\/p>\n Because of arthritis and spinal stenosis, \u201cI can\u2019t walk with an upright posture for more than a few minutes\u201d without pain, she said. \u201cI basically live on Tylenol.\u201d Yet when she makes an appointment and the scheduler asks if she will need assistance, Poling replies that she won\u2019t.<\/p>\n \u201cMy personal voice says, \u2018Come on, you can do it,\u2019\u201d she said.<\/p>\n Identifying as a person with a disability provides other benefits, advocates say. It can mean avoiding isolation and \u201cbeing part of a community of people who are good problem-solvers, who figure things out and work in partnership to do things better,\u201d Meade said.<\/p>\n Government programs and private organizations like the National Disability Rights Network<\/a>, the Americans with Disabilities Act National Network<\/a>, and the National Association of Councils on Developmental Disabilities<\/a> help connect people with services and supports in their communities.<\/p>\n Several studies have found, too, that patients who identify as disabled have less depression and anxiety<\/a>, higher self-esteem<\/a>, and a greater sense of \u201cself-efficacy<\/a>\u201d than disabled people who don\u2019t.<\/p>\n For years, despite a lifetime of surgeries for congenitally dislocated hips, as well as joint replacements and cancer treatment, Glenna Mills, an artist in Oakland, California, told herself that she was not disabled.<\/p>\n \u201cI suffered a lot by denying that I couldn\u2019t walk very far,\u201d she recalled. Although walking caused pain in her knees, hips, and shoulders, \u201cI didn\u2019t want people to see me as someone who couldn\u2019t keep up,\u201d she added.<\/p>\n But about 10 years ago, \u201cI stopped worrying about that,\u201d said Mills, 82. \u201cI was more willing to say, \u2018I can\u2019t do that activity. I can\u2019t walk that far.\u2019\u201d She bought a scooter that allowed her to take walks with her husband and dog, and to spend time in museums. \u201cI\u2019m happier now,\u201d she said.<\/p>\n More often, older Americans resist a label that could help improve their care. Even those who do request accommodations may find that enforcement of the ADA remains spotty, in part because patients don\u2019t always report violations.<\/p>\n The Meades, after years of pleading from their children, have made appointments to see an audiologist about new hearing aids.<\/p>\n But Poling intends to struggle on without seeking or accepting assistance. \u201cI know that point will come,\u201d she said. \u201cI\u2019ll attempt to surrender as gracefully as possible, given my personality.\u201d<\/p>\n Until then, she said, \u201cthe mental picture that\u2019s acceptable to me is not wanting to look like I\u2019m disabled.\u201d<\/p>\n The New Old Age is produced through a partnership with <\/em>The New York Times<\/em><\/a>.<\/em><\/p>\n\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n