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Organizing NYC’s Disability Pride Parade Strikes the Right Chord for Jazz Musician

By Mike Ervin

On Jan. 8, many of the greatest and most renowned living jazz musicians performed in a concert to raise money for the inaugural New York City Disability Pride Parade, which will take place July 12 .The all-star concert lineup included former Miles Davis Quintet members Jimmy Cobb and Ron Carter, legendary octogenarian Benny Golson and younger superstars such as pianist Brad Meldau.

It took a jazz musician of equal talent and stature to bring them all together. Jazz pianist Mike LeDonne was the driving force behind it all. Back in 2012, he got the idea that there ought to be disability pride parades just like there are gay and ethnic pride parades.

“I thought no one had ever thought of this before,” LeDonne said. “I thought, ‘Wow, what a brilliant idea!’”

So LeDonne called the New York mayor’s office and suggested that whoever is in charge of parades should organize a disability pride parade. “That’s where I started from square one -- totally ignorant but well-meaning. I learned a ton.”

He learned that such parades are the result of large, grassroots endeavors. So he put together a nonprofit company to organize a New York disability pride parade. He also learned that there were disability activists around the world putting together annual pride parades in their communities. He sought out disabled people in New York to join in the effort. He also learned that there exists a strong and vibrant disability rights movement with a long history of accomplishments.

All this was an exhilarating revelation for LeDonne because his daughter, Mary, who is now 11, was born seven weeks premature and weighed only 3 pounds. She was diagnosed with Prader-Willi syndrome. Thus, she is legally blind, does not speak, often uses a wheelchair and has cognitive disabilities.

LeDonne’s inspiration for the parade grew out of a musical performance he watched at the school his daughter attended in New York. Kids with a wide variety of disabilities sang the song “Put on a Happy Face.” To LeDonne, the lyrics reflected the journey on which his daughter’s disability had taken his wife and him -- from the shock of diagnosis and the gloomy prognoses of doctors to the ultimate realization that even though this parenting experience would be quite different, it would still be full of love and joy.

“I felt really proud of these kids and really proud of my daughter at that moment,” he said.

The more LeDonne talked to others who organized other disability pride parades, the more he learned about the disability rights movement, and the more excited and motivated he became to make a parade happen in New York, despite the fact that it will cost about $50,000.

“I let them tell me what to do, what to read so that I could get involved in the movement in a way that’s much bigger than just doing something that would be nice for my daughter. I started reading the history and finding out things, and suddenly this thing turned into something much heavier that could do incredible good for a huge amount of people. It felt right. It felt great to be connected to a community because I thought I was out here by myself like Don Quixote swinging my sword at windmills.”

LeDonne said that by organizing a parade he’s just trying to make the future more welcoming for his daughter and others like her.

“I’m trying to make the world better for her when I’m gone. What happens to her when I’m gone? I don’t want her shoved into a state-run institution where they put people in a wheelchair, drug them up, feed them and take care of them until they die. There’s a lot of money to be made off these institutions. It’s bucks -- big bucks! The thought of that happening to my sweet little daughter is out of the question.”

He said the dehumanizing stigma that permits societies to justify this brutal segregation is rooted in disability shame.

“Shame is built right into the culture from childhood. Our culture is in the Dark Ages as far as how they look at the disabled. The way the doctor was making it sound (when Mary was born), I thought we were going to have some sort of blob sitting in the corner. Mary is cognitively disabled, but she knows a lot of stuff. She plays piano, she laughs, she has a sense of humor, she takes things apart.”

And Mary and dad enjoy the same kind of music. “If you put on some kiddy music, she’ll walk right away.”

The January concert, which was held in a Quaker church, raised $20,000.

“There was an incredible spiritual feeling in that room,” LeDonne said. “It was an awesome night and a night I will never forget because in the end, I got up with my daughter and I told all those people that I couldn’t be prouder to have her as my daughter. And everybody cheered. That was intense. That was the moment for me.”

Since then, LeDonne has stepped back so that the people with disabilities who have come on board can finish putting the parade together.

“It’s got to be a first. I don’t think there’s ever been a jazz musician that’s done anything like this. So I’m officially crazy.”

But he will be at the parade for sure, and he plans to stay involved in making sure the New York parade happens every year.

“This is going to be a helluva parade!” he said.

Mike Ervin, who writes on disability topics, is a frequent contributor to Independence Today.

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