Ben Mattlin

A disabled journalist documents how the “ADA Generation” has grown up, the rise of neurodiversity, impact of identity politics and representation, and the state of a disability rights and justice agenda Weaving together interviews with reportage, Disability Pride traces the evolution of societal attitudes and activist agendas around disability from a fight for civil rights to a celebration of identity and heritage. Since the American with Disabilities Act (ADA) passed over thirty years ago, changes can be seen everywhere—wheelchair ramps, braille signs and menus, public transit lifts, closed captioning on TVs, "reasonable accommodations" by employers such as flextime and telecommuting, and myriad other measures. People under 30 have not lived in a world without the expectation that disabled people should fully participate in society. Journalist Ben Mattlin demonstrates how a new generation of young people and disabled activists have made diversity and inclusiveness hallmarks of today’s social justice movements and modern media. From a giant Times Square billboard featuring disabled model Jillian Mercado to paraplegic actor and singer Ali Stroker becoming the first wheelchair-using performer ever to win a Tony, the world is ready to see, even to celebrate, nontraditional images of beauty. Mattlin explores how this new wave of disability visibility and pride is furthering the cause of disability justice. Today, activists are fighting for long-term personal-assistance services and for mental-health support systems and it's coming from a broad spectrum of disability perspectives. Although this new generation of activism may be different from the protest actions of previous generations, Disability Pride demonstrates how to fearlessly push the movement forward.

Dispatches from a Post-ADA World

Disability Pride

Describes how the author, an NPR commentator and professional writer who was born with spinal muscular atrophy, was expected to die in childhood but who with the support of a growing disability rights movement became one of the first students in a wheelchair to attend Harvard.

How the Disability Rights Revolution Saved My Sanity

Miracle Boy Grows Up

A frank, humorous exploration of interabled dating, love, and marriage Ben Mattlin’s wife, ML, recalls falling in love with his confidence and sheer determination. On one of their earliest dates, he persuaded her to ride on his lap in his wheelchair on their way home from an Elvis Costello concert. Thirty years later, they still travel like this from time to time, undaunted by the curious stares following them down the street. But In Sickness and in Health is more than an “inspiring” story of how a man born with spinal muscular atrophy—a congenital and incurable neuromuscular condition—survived childhood, graduated from Harvard, married an able-bodied woman, built a family with two daughters and a cat and a turtle, established a successful career in journalism, and lived happily ever after. As Mattlin considers the many times his relationship has been met with surprise or speculation by outsiders—those who consider his wife a “saint” or him just plain “lucky” for finding love—he issues a challenge to readers: why should the idea of an “interabled” couple be regarded as either tragic or noble? Through conversations with more than a dozen other couples of varying abilities, ethnic backgrounds, and orientations, Mattlin sets out to understand whether these pairings are as unusual as onlookers seem to think. Reflecting on his own experience he wonders: How do people balance the stresses of personal-care help with the thrill of romance? Is it possible that the very things that appear to be insurmountable obstacles to a successful relationship—the financial burdens, the physical differences, the added element of an especially uncertain future—could be the building blocks of an enviable level of intimacy and communication that other couples could only dream of? We meet Shane Burcaw, a twenty-three-year-old writer, who offers a glimpse of his first forays into dating with a disability. There’s Rachelle Friedman, the “paralyzed bride,” as the media refers to her, and her husband, discussing the joys and challenges of a new marriage and a growing family. And Christina Crosby and her partner, Janet Jakobsen, reflect on how Crosby’s disabling accident called for them to renegotiate their roles and expectations in their long-term relationship. What emerges is a candid glimpse into the challenges and joys of interabled love—from the first blush of sexual awakening to commitment and marriage and through to widowhood.

Ben Mattlin

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