Fred Schreiber, rest in peace (
@RealElephantboy), aka Howard Stern’s Fred the Elephant Boy. In real life, I was fortunate to call him a friend, and he even appears as a character in my new novel, Ragman. I had just texted him before Christmas; I hope he got to read his part before he died.
Jeremy Schreiber, then 39, had to make another life-altering decision shortly after being diagnosed with amyotrophic lateral sclerosis (ALS).
“I had a choice — climb into bed, pull the covers over my head, or say ‘[expletive] it’ and confront it head-on,” Schreiber said in his forthcoming book, “Never Say Invisible.” written in the excerpt. Tells of his ALS experience and the difficulties of living in a world that is not designed for people with disabilities.
Schreiber died of amyotrophic lateral sclerosis the day before his 42nd birthday in October 2021. His words, however, will live on through text-to-speech and eye tracker input. His parents, Fred and Ronnye Schreiber, said he started writing the book in 2018, just six months after being diagnosed, and lost the ability to type with his eyes in mid-2021, before completing it. This is the book.
His parents collaborated with Sandra Jonas Publishing, which hired Schreiber before his death to edit, finish, and publish the book. It is scheduled to be released this spring.
According to Fred Schreiber, 73, his experience in “Never Say Never” touches on the breadth of difficulties that people with disabilities face as a result of society’s disregard for them.
“Everywhere you go, the sidewalks aren’t well made, the doors aren’t wide enough, and that’s what he really meant,” Ronnye Schreiber, 70, who lives in New Jersey with her husband and owns a conference company, told ALS News in a video interview with Today. “It was critical for him to spread the word so that people would begin to listen and say, ‘Well, we’re human too, we’re not invisible.'”
Schreiber does what he can to help the disabled and the ALS community, whether or not he has to use a power wheelchair at some point, is unable to speak, and requires 24-hour assistance from paramedics.
In the summer of 2019, he was invited to speak at the ALS Association Advocacy Conference in Washington, DC. join. He and a delegation from various ALS associations successfully lobbied Congress to repeal a rule that required ALS patients to wait five months for Social Security disability benefits. Schreiber also testified before the New Jersey legislature in support of increased funding for ALS research.