Organizing NYCs 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
I thought no one had ever thought
of this before, LeDonne said. I thought, Wow, what a
So LeDonne called the New York
mayors office and suggested that whoever is in charge of parades should
organize a disability pride parade. Thats 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.
LeDonnes 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 daughters 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
I let them tell me what to do, what
to read so that I could get involved in the movement in a way thats 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
LeDonne said that by organizing a parade
hes just trying to make the future more welcoming for his daughter and
others like her.
Im trying to make the world
better for her when Im gone. What happens to her when Im gone? I
dont 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.
Theres a lot of money to be made off these institutions. Its 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 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, shell walk right
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 couldnt be prouder to have her as my
daughter. And everybody cheered. That was intense. That was the moment for
Since then, LeDonne has stepped back so
that the people with disabilities who have come on board can finish putting the
Its got to be a first. I
dont think theres ever been a jazz musician thats done
anything like this. So Im 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
This is going to be a helluva
parade! he said.
Mike Ervin, who writes on disability topics, is a
frequent contributor to Independence Today.