THE INSPIRATION OF LOVE
Delfeayo Marsalis has had an outstanding career as a musician, and is certainly well known in his hometown and among jazz fans throughout the world. If he is less famous than his brothers, it is probably due to Delfeayo’s decision to live in New Orleans rather than go to New York, Los Angeles, or some other center of the music business.
All of the Marsalis family are known for “giving back” to whatever community they are a part of, and Delfeayo is no exception. Mr. Elie shines a light on the annual summer arts camp Delfeayo Marsalis runs for kids in New Orleans, something the city needs this summer more than ever. And Mr. Elie also shines a light on part of Delfeayo’s inspiration for wanting to help others: his brother, Mboya.
The fifth of Ellis and Delores’ six boys, Mboya has autism. While his other brothers played music and basketball, Mboya mostly stayed home, his development limited by the disease.
“A lot of what I find missing in our society is a lack of compassion. Living with someone that you love and care about who has a handicap inspires that type of compassion and understanding,” Marsalis said.
“I started working with kids at Children’s Hospital when I was in high school. I’m sure that had something to do with Mboya. I figured I could help out some kid in need,” he said.
I know exactly what Mr. Marsalis is saying about the lack of compassion. Before learning about the world of ASD, I probably would have attempted compassion and understanding, but I don’t think I would have actively sought to understand it. That’s to my shame. But having an autistic child certainly brings understanding. And I have not been shy about educating family and friends.
Loving someone with autism inspires a lot of feelings and a lot of responses. Lately, the level of discourse among the greater autism community has grown quite nasty. Some things have been said that I will probably have to write about in the next few days when I get a chance (blogging remains a distant priority after my family and my career). Today, though, I will take comfort in the response of Delfeayo Marsalis to his brother’s autism.
The Marsalis family addressed a letter to the editor of The Times-Picayune, in response to the column I discuss above. I thought it appropriate to include their letter as a post script:
Lolis Eric Elie’s column on Delfeayo Marsalis, our fourth son, and his Uptown Musical Theater was very enlightening and inspiring. However, his reference to our fifth son, Mboya, as having a “disease” is a misnomer.
Autism is not a disease. At present, autism is considered a neurological disorder and, until further research, will remain somewhat of a mystery.
With much courage, love, patience and dedication, we have seen our son slowly improve without the use of medication. We have been on a “long and winding road,” to which we are sure all parents of autistic children can relate.
Dolores and Ellis Marsalis