When I see someone whose body is twisted into an unfamiliar shape or cannot move as mine does, I often flinch, then try to hide the involuntary recoil. Afterward, I lie to myself, insisting that this is empathy. It is not. It is stark fear. Why? Because I am not sure I would have the same resilience. There is also a tinge of survivor’s guilt—I escaped their fate on what grounds, exactly?
A few weeks ago, I learned about the disability paradox, and something deep inside me relaxed. Studies have consistently shown that people with a serious disability—people of whom others blurt carelessly, “I’d want to kill myself!”—often report an excellent or good quality of life. Not always, but often enough that it ought to short-circuit that split-second recoil that freezes my initial response into something awkward, apologetic, and no doubt insulting. I search for more about “the disability paradox” and find a documentary by that name, filmed in Northern Ireland and picked up by the BBC. Chris Lynch uses filmmaking to forget, at least for few hours at a time, that he has osteogenesis imperfecta, commonly known as brittle bone disease. By age six, his legs were fracturing faster than they could mend. He has used a wheelchair ever since.
Lynch had worked with Triple Vision production company in the past, and together they wanted to make a doc that was “a bit more authentic, raw, and real” than the usual bland “Aren’t they great?” paean to people with disabilities. Mainly, Lynch wanted to test the disability paradox, because it did not feel true for him. Life was fine when he was a kid—but back then he thought (because his parents were told) that he would someday be able to walk. His twenties were fine because he partied them away with a big bunch of friends. But then those friends started settling down, marrying, and having children, and he was left drinking alone, not for fun but to lift the depression.
Antidepressants dulled both the lows and the highs; as for his anxiety, it was not biochemical in origin. It was valid. He broke up with a girlfriend because he was terrified that she would roll over and accidentally fracture his leg, which has only a reed’s thickness of bone left. He wants it amputated, so he can stop worrying every time he takes a shower whether this is the day he slips and shatters it—but the risks are too high. A psychiatrist recently told him that the terrified trance he slips into during his morning shower is a form of PTSD: trauma anxiety, the culmination of a series of crises and unending worry.
For the doc, Lynch set out to interview others with disabilities. Brian Gault, who was born with no arms after his mother took Thalidomide. Stafford and Jean Daly Lynn, a married couple who both wound up using wheelchairs after accidents as young adults. Broadcaster and activist Samantha Renke, who also has osteogenesis imperfecta and scolded him on camera for calling it a disease, which pissed him off because technically it is a disease.
They have all made peace with their disability, and it shows in their easy laughter, their wry coping strategies, the joy they take in their careers and relationships. Lynch’s mom is interviewed, too, and she says Chris always hung out with kids who were not disabled, never thought of himself as disabled, maybe never fully accepted it. Listening, he nods. He does not want to accept it; that would feel like giving up.
What he wants is the paradox. He wants to figure out how to be happy.
Of course, the disability paradox could be a crock. The people in these studies could be either deluding themselves or deliberately deluding the rest of us. But watching Gault bubble over, gesturing animatedly with his feet as he talks about his beloved wife, his strong faith, and his world travels, it is hard to think he is in denial. Renke is a hoot, quick-witted and ebullient. And when Jean Daly Lynn talks about their infant son, she and Stafford both light up.
Lynch envies the solace Gault receives from his faith but cannot reconcile that faith with all the suffering in the world. Renke has an activist’s fire that Lynch does not share. “The world has gone mad in terms of political correctness,” he mutters. When the BBC asked him to change the documentary and say Jean experienced, instead of suffered, a horseback riding accident, he flat-out refused.
“I struggle to understand how she and Stafford are so genuinely happy, with all the cards they’ve been dealt,” he says a minute later. “In some ways I have in the back of my mind that they weren’t being completely truthful.”
That, or a loving marriage and a baby provide more joy than he realizes.
Lynch faced down that long bout of depression, and now he drinks far less—and more out of pandemic boredom than despair. The conclusion he reached after making the documentary was that “the disability paradox definitely holds truth for some people, and it doesn’t for others. It’s not exactly black and white.” What stuck with him was not the cheerfulness of those he interviewed—their lives are very different from his own—but a point made by one of the academic experts, Dr. Paul Dolan, head of psychological and behavioral science at the London School of Economics and Political Science. Author of Happiness by Design: Finding Pleasure and Purpose in Everyday Life, Dolan emphasizes that this is a journey, not a goal-driven pursuit in which you fixate on one thing until you achieve it.
I ask Lynch whether part of the paradox might be that accepting a disability takes the pressure off, allowing you to choose what parts of life you want to focus on and let the rest fall away. Just the opposite, he counters. “Anyone with a disability will always be having to go beyond other peoples’ expectations. You’re expected to be this person who lays about collecting benefits, and you want to prove people wrong.”
He has no intention of letting up on that to feel happier. Acceptance still feels too passive. “The thing that feels right to me,” he says, “is having distractions.” The word sounds too lightweight for the job—like junk TV when you’re sick with a cold—so I quiz him on it. Surely he is looking for something deeper than mere “distractions”?
He shakes his head. “Living with a disability, the issues will never change, and they are always present. So you’ve got to either accept that or distract yourself.” The big sources of happiness would be financial stability and a relationship, he concedes, and lets that trail off. He is counting on neither. “For me,” he resumes, “it’s pursuing these small passions I have—cooking, music, anything that’s creative.”
This, for now, is how he is defining happiness. And it is working. The biggest of those “small passions” is the career that is fast taking shape. He has turned all his past work with media into a nonprofit that creates content about living with disabilities. It is called 1in5media, because one in every five people has a disability.
The contrast between this new project and his dark years also handed him a definition for depression: “the inability to construct a future for yourself.”
Long after the conversation, I am still thinking about that phrase. Every time I flinched or recoiled, it was an admission that I could not imagine a happy future for that person.
My mistake. My loss.
Read more by Jeannette Cooperman here.