A Tale of Two Daniels

How the WWE tried to protect its image by exploiting our prejudices

In the era of celebrity-driven philanthropy, it just might have been a non-profit’s worst nightmare. A celebrity does something ghastly, and surprise! Somebody blames the people you’re trying to help.

That’s what happened in the world of Fragile X last week when World Wrestling Entertainment tried to deflect blame for the apparent murder/suicide of wrestler Chris Benoit and his family.

Brushing aside questions about illegal steroid use, the WWE put out the word that Benoit’s 7-year-old son Daniel had Fragile X syndrome – an account that family members now dispute -- and that his disability was a constant source of tension for Benoit and his wife.

Faster than you can say eugenics, speculation about Benoit’s anguish over the boy’s “suffering” swept the airwaves and the internet, eliciting sympathy and temporarily blotting out the “roid rage” theories. Who among us can judge, wrestling fans asked one other. Perhaps dealing with a chromosomal anomaly was just too much stress. Perhaps Daniel was a “burden;” perhaps he was hopeless.

Let me add my own theories to the mounting pile. Perhaps the publicly-traded WWE was engaging in damage control. Reasoning that fans would be repelled by the specter of a celebrity turned murderer, perhaps they were banking on the hope that many might perceive a utilitarian logic in ending the life of a child with a disability. Judging by the number of Google hits that now connect Benoit’s name with the term “mercy killing,” the WWE may not have underestimated the public sense of justice.

Whether Daniel Benoit did or didn’t have Fragile X is not our business – or the WWE’s. What we should be concerned about instead is the WWE’s cynical effort to shift blame to an innocent and voiceless young boy, in effect victimizing him a second time.

In so doing, the WWE also sent hurtful messages about the many thousands of people who are living productive, satisfying and dignified lives with Fragile X syndrome, and about their families. To suggest that their lives are fraught with despair is both inaccurate and demeaning, and fuels public stigma against them.

Far from being a rare medical condition as it was described in media reports, Fragile X syndrome is shared by between 70,000 and 100,000 people in the U.S. according to the National Fragile X Foundation. If all the people who are carriers are included in that estimate – an estimated 1 in 130 women and 1 in 700 men -- the number rises to more than a million. The disorder gets its name from the long tail of the X chromosome.

While Fragile X syndrome is the most common inherited cause of mental impairment, better education and early intervention services have greatly improved prospects from what they were a generation ago. Experts say many young adults with Fragile X are now holding jobs and living independently or semi-independently, and that the trend will continue to grow.

We may not be aware of it, but it’s very likely that some of these people are among our neighbors and friends. If we are really worried about alleviating their “suffering,” then perhaps we should turn our attention to broadening the availability of accurate diagnosis and intervention services, and stepping up research into treatments.

I’ve often wondered why the public is so quick to swallow unproven assertions that families of people with disabilities are dysfunctional, and that disability in a family causes it to become violent.

Perhaps it’s a failure of imagination. If we haven’t lived with a person with a disability, we don’t know what to expect. As with raising any child, raising a child with a disability brings many aggravations as well as joys.

Studies have shown that families with disabled children report they fare no better or worse than others, and often rate themselves higher in personal satisfaction than other families. Many of them say what’s stressful is less their child’s diagnosis than the public stigma attached to disability.

Our family cherishes the friendship of a young man, also named Daniel, who has Fragile X syndrome. We greatly value his kindness, charm, sense of humor and taste in television shows (which runs heavily to reruns of “West Wing”). Supervisors in the gourmet shop where he has been working are much impressed by his enthusiasm and easy way of relating with the customers. Our Daniel has friends, a supportive family and a very active social calendar. He enjoys his life.

I only wish that Daniel Benoit might have been so lucky.

For more information, visit the National Fragile X Foundation or the Fragile X Research Foundation.