The Disability Paradox Explained

Posted by Allen Rucker in Life After Paralysis on September 27, 2022 # Lifestyle

Allen RuckerSay, you are an ordinary, non-disabled American, aimlessly wandering through the mall, and you spot a markedly disabled person coming your way. You a) wince, out of discomfort or fear, or b) smile weakly while thinking, “What a crappy deck of cards she was dealt!” or c) turn quickly and walk into the nearest pet store. This is not something you want to witness or even think about. “Oh, she must be so unhappy, bitter, needy, and lonely.” The minute you see that adorable cockapoo in the window, you forget about the whole encounter.

But wait a minute. Multiple peer-reviewed studies have shown, and legions of disabled people confirm, that many of us thought of as damaged goods experience a satisfying or excellent quality of life, that we find purpose, joy, love, and self-worth in equal or even greater measure than many others. We live with limitations and even periodic pain and suffering and yet forge ahead to make life work in wonderous ways even though we are perceived to be permanently damaged and condemned to a bleak, forlorn fate.

This is the disability paradox. You are disabled, but life is good. For millions, this doesn’t compute.

According to a recent University of Minnesota report, 82.4% of US physicians believe that the disabled have a worse quality of life than the non-disabled. These are doctors, mind you. Doctors are trained, nay, indoctrinated to see a disability as an impairment or illness that needs to be fixed or cured. This is the well-known medical model of disability and it’s the way most of us see it, even some of us who are disabled. Personally, I would love if there was a “cure” for my paralysis, but it would be foolhardy to put my life on hold until that happens. In truth, getting fixed is far, far down my to-do list. Living the best life now -- which often means struggling with my own paralysis-related doubts and fears – is the only cure within my grasp.

I recently learned about a 2020 BBC documentary called “The Disability Paradox,” made by a Northern Irish filmmaker, Chris Lynch, himself disabled with osteogenesis imperfecta, a genetic disorder causing bones to fracture easily, aka, brittle bone disease. Using himself as the principal subject (and the film’s “presenter”) as well as drawing in others living their best-disabled lives, Chris set out to unravel this so-called disability paradox, a phenomenon he is clearly skeptical about. As another writer opined, could this be simply a form of denial or delusion, roughly equivalent to the “happy slave” idea in which people think they are happy because they don’t know any better. Or perhaps these happy warriors are happy in public, a way of fending off judgement, but miserable in private.

Chris himself struggles with deep depression, which in part explains his uneasiness with the high-happiness quotient others report. Are they really as blissful as they say? One gentleman he interviews, Brian, has lived with no arms for 42 years and is seemingly at ease doing everything from picking up a pen off the floor to shaking your hand to driving with only his feet. He derives comfort, he says, from the Bible and the community of Christians around him. At one point he remarks, “I even thank God for my disability.”

Samantha, a striking blond also with osteogenesis imperfecta, is clear-eyed about how she sees herself versus how others see her. “Disability doesn’t scream beauty,” she announces, and often sees what she calls “the disgust” on other people’s faces, but she describes herself as relatively happy and successful. “Don’t bless me,” she announces, and stop making inane assumptions.

The happiest people on the block seem to be Stafford and Jean, both wheelchair-users who fell in love, married, and now have a bouncing baby boy. “You have to move on,” says Stafford. Jean admits that their life may have higher highs and lower lows than her neighbors but can’t imagine a better life. “This is my life; this is my path. We have an awesome life.”

It’s about adaptation, says Professor Havi Carel of the University of Bristol, herself disabled. And most of us can adapt. People who acquire a disability during their life, it’s been shown, don’t feel, after a year or so, any less happy than before that event. But can you become happier? Chris concludes that the disability paradox holds true for some but not others. The relentless negative social gaze is a big part of the struggle. “The thing that feels right to me,” he says, “is having distractions.” He means, I think, what pioneering positive psychologist Martin Seligman called “gratifications,” activities we find so engaging and satisfying that we enter a zone and don’t notice the passage of time. As Chris notes, your disability will never disappear through magical thinking. It will always present problems. It will partially define you, but it certainly needn’t limit you.

Disability and happiness are not mutually exclusive. Let others ponder the paradox while you get on with living it.

REF

“The Disability Paradox,” a BBC Northern Ireland documentary, presented by Chris Lynch, 2020, available on YouTube.

Cooperman, Jeannette, “The Disability Paradox,” Common Reader. 2/17/21,

https://commonreader.wustl.edu

Allen Rucker was born in Wichita Falls, Texas, raised in Bartlesville, Oklahoma, and has an MA in Communication from Stanford University, an MA in American Culture from the University of Michigan, and a BA in English from Washington University, St. Louis.

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.