Highlights in 2024 and *2025* Updates

July, 2025

Harlem, New York City.

Image Description: Huggin up on The Architect Abiodun Oyewole of The Last Poets at my brother Sharrif "Negrodamus" Simmons's EMANCIPATION APPAREL clothing launch at Milton Washington's Rokmil, Harlem, NYC, July 2025. Photo by Desiree Mwalimu-Bans

My immense gratitude for all the love, donations, well wishes, and prayers. My apologies for the lapse in communication, which is due to us living on our heels and having to jump through so many hoops, and do so much administration in order to survive. Many people believe that there is some kind of security net for those of us who fall into insecurity due to illness. THERE IS NOT.

My nephew Darrin Banks with my big brother David Banks. I miss you both so very much.

Last year, I tried to deal with the loss of myself, my artistry, and my loved ones, mainly my beloved nephew Darrin Banks, who passed away suddenly by heart attack, just before my birthday on July 4th. I tried to redefine myself and rediscover my creativity through my podcasts, and by trying to dream new dreams, some of which are now starting to manifest. I'd like to acknowledge both The Jazz Foundation, and The Entertainment Community Fund (formerly The Actor's Fund), for their continued support.

In 2024, I was really honored to interview my closest sisters in music Karma Mayet, Shelley Nicole and LaFrae Sci. Each of these women are exceptional artists and thinkers, and it was a privilege to have them on the show. Those episodes were inspired by Women's Herstory Month and partially, me and Greg Tate's relationship to feminine ideologies.

A short clip from wifey of our set at Joe's Pub in November 2024. I was elated to be able to conduct my Suga Fam!! What an incredible evening.

We did the second edition of the Joe's Pub Fundraiser, with my fam Liza Jesse Peterson and Sharrif Simmons returning as our gracious hosts, and artists Ngoma Hill, Hundred Watt Heart featuring Kirk Douglas of The Roots, and my beloved Burnt Sugar The Arkestra Family. These and other community contributions made my hydrolic toilet lift possible (shout out to my sister Bianca Ellis), kept my travel wheelchair traveling, and helped keep the roof over me and my family's heads. I was able to purchase some medical equipment that was vital to my health, as there are no medications, drugs or surgical solutions for this condition. In my many trials and tribulations with FSHD, I've asked myself: what lessons are there to learn from this? The one thing I've been shown very clearly is that I'm loved by many, which is humbling and it means the world to me. Please stay tuned on the Proceeds for the Progression page for selected footage of the event.

In 2025 I saw my stepson Chosen Mwalimu-King graduate from high school. We're so proud he's college-bound and heading to Tufts University in the fall. My other stepson Darshan Mwalimu-King took on his first paid mentorship opportunity in Connecticut this summer. It's been rewarding to see how the seeds my wife and I have planting are bearing fruit.

Image Description: My Stepsons Chosen and Darshan Mwalimu-King, May 2025.

This year has picked up with a few special collaborations that I was excited to work on.

Image Description by Petra Kuppers: A very early days, initial overview of my 3-D tree from Planting Disabled Futures: a central trunk, and two off-shoots, with glowing portals in the root systems, at the bark, and in the crown. And glowing mushrooms! And glowworms! In the actual experience, you will be able to travel to each of these sites, meet creatures, and then visit with the portals.   

In March/April, I was proud to offer the portal theme song for disability culture activist, writer, dance video maker and community performance artist, Petra Kuppers (also my wife's former MFA advisor at Goddard College in Vermont), in Planting Disabled Futures, a community performance and virtual reality project. Petra teamed up with University of Michigan's Emerging Technologies Group on graphic modeling, Unreal Engine work, navigation structures, and more. The track is called "Template @1st 8", and features an electronic conduction by myself with artists Gregory Kage, MJay Gong, and Richard Anderson. My wife and I were proud to help kick off its inaugural New York City house-party debut in our living room. Here's a beautiful description about the project from Petra:

"Even though much progress has been made in the representation of disability and sexuality, disabled people are still rarely seen as agents of sexual creativity or as queer improvisers projecting themselves in new ways into the future. This project engages this ongoing problem by offering registers of tech play, of technologically mediated representations of disability that are not cure-based, but are sassy, affirmative, and pleasurable in interspecies engagements."

All Image Descriptions by Petra Kuppers, April 2025: Mikel Mwalimu-Banks, our project musician, with a headset at the house party he and Desiree hosted. Below: Desiree Mwalimu-Banks, whose gorgeous sexy carrot portal is in our tree, flying through our world in a headset, with me smiling on.

Above: moira williams and Elisabeth Motley at a Planting Disabled Futures house party in Harlem, at Desiree and Mikel Mwalimu-Banks’ apartment, both with headsets on, in a place full of books, photos, instruments, Afrofuturism mementoes, many warm and rich colors.

Myself, Russel Frederick and Niama Safia Sandy at the DisabilityIn The black Community Public Forum at Lafayette Avenue Presbyterian Church in Brooklyn, June 2025.

On Sunday, June 1st, I was honored to participate in Disability In The Black Community: A Public Forum at Lafayette Avenue Presbyterian Church in Brooklyn, for a very special gathering curated by my brother Brian Tate. The program featured brilliant creators whose experiences with healthcare and the arts offered deeper agency in and awareness of the Black disability journey. The program opened with a reading of Falling Into FSHD: Disability In The Black Community, a PBS op ed piece by my wife,Desiree Mwalimu-Banks, accompanied by the marvelous cellist Sarah Overton. This was followed by a panel discussion including myself and visual activist/photographer Russell Frederick, moderated by anthropologist, curator, essayist and musician, Niama Safia Sandy.

THE Mr. Marvin Gillmore, my podcast guest of honor in June 2025. Digital collage featuring original image of Marvin from Benjamin Cheung, by Desiree Mwalimu-Banks, July 2025.

My latest podcast interview with the extraordinary centenarian Marvin E. Gillmore is now up! Please tune in to the history and wisdom that he has to share in this offering on the "Episodes" tab.

Me playing my freakaphone at the Wilmer Jennings Gallery on East 2nd Street, New York, NY, June 2025.

Also in late June, I joined my Burnt Sugar Fam for the closing reception of the exhibition Sound of Light & The Blues and Mean Reds: Iconic Music Figures of Jazz and Beyond Through the Lens of Mentor Frank Stewart and Mentee Petra Richterová.

We offered the “Flyboy in the Buttermilk” Conductions at Wilmer Jennings Gallery on the L.E.S., featuring excerpts from BSAC’s dearly loved and missed Gregory Stephen “Ionman” Tate’s groundbreaking books “The Fly Boy in the Buttermilk Volumes One & Two” . These works were "reconstructed as prose by Shelley Nicole and LaFrae Sci while the BSAC band created one-time-only 'caramelized' sonic responses under Shelley’s magical, sonic-mystery-tour baton" (shout out to the one-and-only Sir Jared Nickerson for this lyrical description!)

Flyer Image by artist and beloved brother/band mate, Gregory Kage, July 2025.

Coming up on Sunday July 13th, I'll be over at Rokmil Fitness right here in Harlem, for our musical electronic experiment, Share <^>Theta. Gregory Kage brilliantly built triggers from percussive instruments made out of recycled materials. I'm doing an electronic conduction of the players and the movement of the music. These are the same materials we used to build the theme song for Petra Kupper's Planting Disabled Futures project. Check her work out and come vibe with us on Sunday!

Please pay attention to my page, cuz I got some things on the stove cookin' up. Again, my sincere love and gratitude to all for your care and support. As my family tries to strategize through this progressive condition, I offer that love is the currency and the currency is love. Please consider making a donation to my GoFundMe fundraiser. Every single drop is a ripple effect in my ocean. THANKU THANKU THANKU!!!