Dr. Peter Ubel—whose latest book is excerpted in this issue of ABILITY Magazine—is pursuing happiness. Of course, so are the rest of us—it’s even stated in our Constitution. Who doesn’t want to be happy? But as a scientist, Dr. Ubel is not satisfied with happiness as a metaphysical goal. He wants to know the how and the why of it. Particularly, how is happiness affected when people develop a serious health problem or disability?
The answer is surprising to many people—in large part, happiness isn’t affected.
With health problems and disability, just as with many other life challenges, humans are remarkable and creative adapters. And for each of us, most of the elements that affect our mood on a moment-to-moment basis— eating the foods we like, connecting with our families, watching our favorite movies and TV programs and sporting events, laughing at good jokes—are completely independent of whether our legs or arms or kidneys function at full capacity. Indeed, some of Dr. Ubel’s research subjects looked at disability as a positive force in their lives, an opportunity to refocus themselves on the things they found really important.
But he also found that the general public is notoriously bad at recognizing this. People dread developing a disability. They are sure they will be unhappy. Even a few of the family members of his happiest research subjects—the very people who had witnessed first-hand that disability did not lead to dreariness—said they could not imagine wanting to live in their loved one’s circumstances.
This book gnawed at me, troubled me, proven to be that pea under the mattress keeping me up at night. Dr. Ubel has proven with science what most of us in the disability community have long observed—people have a hard time understanding something they haven’t experienced. If some people are so bad at imaging the impact of disability on happiness, are they as bad at imagining the impact of disability on work performance? If so, what does that mean for changing their attitudes about employing people with disabilities? Treating us equally? Remembering to include us as volunteers, active community members and friends?
Dr. Ubel acknowledges that our societal tendency for mis-imagining can have negative implications: “I worry that it affects how we interact with people with disabilities and leads to stigmatization—that we find ourselves thinking, they’re just slow, unhappy, grouchy people and I don’t want to be around them.”
But he has also experienced that for some people, association with someone who has a disability changes their perspective. He talks about one of his friends, who developed amyotrophic lateral sclerosis (also called ALS or Lou Gehrig’s Disease), a universally fatal illness. Early on, his friend noticed people withdrawing and gently confronted them. In response, many reexamined their behavior and forced themselves to come to terms with their unconscious reactions.
Similarly, one goal of ABILITY Magazine is to help all of us confront our assumptions and mis-imaginings, one story at a time. The more we listen with a new ear—so to speak—to people’s experiences, the more likely we are to hear what they’re really saying, not just what we expect them to tell us.
Gillian Friedman, MD
Managing Health Editor
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