Roy Pechtel opened our phone conversation by asking if I knew Shaq’s shoe size.
Recognizing a loaded question but playing along, I told Roy I believed it was 17, having once placed my 10 over an actual-size floor silhouette of Shaq’s foot at the Naismith Basketball Hall of Fame.
I was way off.
So was Shaquille O’Neal, when he made fun of Jahmel Binion on Instagram last week, sparking a social media storm that was covered by a TV station in Detroit, where the 23-year-old Binion lives, and The Associated Press.
Otherwise, you probably didn’t hear about it, and probably still don’t know much about ectodermal dysplasis (ED), as I didn’t before Roy called.
It’s a rare genetic disorder with a variety of symptoms, like missing and malformed teeth, very thin hair, disfigured lips and noses, sensitive skin and a lack of sweat glands.
People with ED are easy targets for bullies, making it all the more reprehensible that Shaq publicly humiliated Binion by posting side-by-side selfies in which Shaq mugged with his teeth over his lower lip.
Cruel and ignorant behavior like this is bad enough when you’re mocking somebody to their face in some isolated setting. Shaq’s social media reach is truly Shaq-like: 500,000 Instagram and 8.3 million Twitter followers.
The 60-year-old Pechtel, who was born in Amsterdam, grew up in Rotterdam Junction and now lives in Duanesburg, is an ED sufferer who has been active with the National Foundation for Ectodermal Dysplasia (NFED) since shortly after ED was finally diagnosed in him through DNA testing about eight years ago.
Naturally, he was outraged by Shaq’s post about Binion, pointing out on Facebook how “It’s amazing that a guy who wears a size 23 sneaker can still get his foot in his mouth.”
Shaq is celebrated for his fun-loving approach to life, but people like Jahmel Binion have a steep enough challenge to be fully accepted in the world that they don’t need someone with Shaq’s media influence reinforcing the outsized value we place on physical appearance with a dumb joke.
The gag was stupid enough whether Binion had ED or not.
The fact that he does have it made it all the more hurtful, not only to Binion, but all of those afflicted with ED.
“Children will see someone handicapped, walking with crutches or in a wheelchair or a blind person with a cane, and it’s natural for them to stop and stare, or point their finger and say something,” Pechtel said. “That’s what children do, but Shaq O’Neal is not a child.”
Pechtel, who was born with six teeth and lost all of them by the time he was 12, said he was fortunate to grow up in a small, closeknit town like Rotterdam Junction, where bullying wasn’t common because everybody knew each other.
When a family moved there and one of the kids made fun of him for having no teeth, “I knocked him on his keister, and we were friends forever after that,” he said with a laugh.
Binion swung back by talking to a TV reporter, saying, “I was kind of hurt because I look up to him and I watch Shaq play basketball, so I was like, why is he making fun of me when he’s supposed to be this role model?
“I can’t let it get to me, then I get hurt and depressed, so I keep my mind positive.”
He did that by starting a popular Facebook page promoting a “Hug Don’t Judge” campaign to inform about ED and, by extension, help quell cyber-bullying.
Shaq quickly took the photo down and called Binion to apologize. Afterward, he tweeted “Made a friend today when I called and apologized to Jahmel Binion. Great dude” with hashtags #alwayslearning and #MYBADCUZ.
NFED executive director Mary Fete wrote an open letter to O’Neal expressing pain and disappointment on behalf of ED sufferers, inviting him to the NFED national family conference in Columbus, Ohio, this summer, and applauding Jahmel Binion for his positive response.
She followed it with another open letter thanking O’Neal for the apology.
Pechtel, who starts to get uncomfortable if the temperature hits 73 degrees and higher, is still pretty steamed, but admitted that something good will come of this if more people are aware of ED and reach out to help.
NFED was founded in 1981 by Mary Kaye Richter after her toddler son Charley was diagnosed.
Since then, great strides have been made, including changes in state insurance laws that allowed Pechtel to get implants and new dentures to replace the ones he had been wearing since he was 17, when his father wanted him to look his best for his high school graduation.
He gave me a copy of a poem he wrote in 2008 that includes these lines:
“Can I play baseball?
“If you got a bat, I got a ball . . .
“Don’t look for all the things wrong with me,
“Look at what I can really be.”
He concludes with “Is it tough having Ectodermal Dysplasia?
‘NO SWEAT!! We like to take a BIG BITE out of LIFE.”
For more information or to donate to the ED cause, go to the National Foundation’s website, nfed.org. June is National Ectodermal Dysplasia Month.
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