December took two of the most inspiring men I’ve had the honor to meet. I’ve drawn a twinkle in both of their eyes, laughed at their terrible jokes, and been blessed by their positivity and encouragement.

Today was the day I got the message I dreaded. Only this time I wasn’t prepared. Joe was gone. He had been through health scares before and I worried and checked in on him, but he was always hanging in there. Living in a body that had been paralyzed from the age of 16 seemed like an ongoing health crisis, but adding cancer on top of that was more than I could imagine. As luck would have it, he was in a good spell when the State House exhibit came around last January and he made the trip with his partner, Kathy, if for no other reason than to drop in on some state reps to advocate for disability rights.

I’ve copied a more official tribute below, but what I want you to know is that he was my #1 cheerleader. Iain and Dylan and my parents are, of course, always supportive, but it would be weird for them not to be as they are my family. Joe didn’t have to do anything. He’d done his piece, he’d posed for his portrait, his work was done. And yet, after every new portrait and every new exhibit there would be a message from Joe with kind words, and a new variation on his favorite joke, that I made him look like a mob boss in his portrait. Doing this project without Joe just sucks. I know the much greater loss is to Kathy, and to the disability rights community that he spent his life working for, but I just want my buddy back.

Here is what Senator Jo Comerford wrote:

Joe Tringali — a passionate, beloved, and fierce leader in the disability justice movement — passed away on December 27.

I send love to his partner, Kathy, and to everyone who mourns his loss and celebrates his exquisitely-lived life and his giant heart — a heart which beat simply and beautifully to make the lives of people living with disabilities a little easier and more just.

Joe’s staunch, strategic, gentle yet unwavering advocacy was dedicated to health care and personal care advances, housing accessibility, an end to the state’s draconian estate recovery law, and more.

Our team worked very, very closely with him on both spouses as caregivers and estate recovery, bills that we’re going to fight like hell to pass this year, in Joe’s honor.

Joe’s work was felt statewide and also here at home where his advocacy in the Connecticut River Valley led to the development of a program to help fund suitable ramps in homes to allow people to remain in their communities.

He was a champion for the right for people to have self-directed care and to live independently — with appropriate supports. A Stavros Center for Independent Living email about Joe’s death, noted, “Joe Tringali was not merely a member of Stavros; he embodied the spirit of independent living, and was a dedicated advocate for the dignity, civil rights and accessibility for people with disabilities.”

Angelina Ramirez, CEO of Stavros, wrote, “Joe has fought against injustices wherever they were. From town access issues to restaurants, health care reform, access to PCA services, and more. No matter where or what, Joe has been a great advocate and an asset to the disability community … For so many of us, Joe will be everlasting.”

Joe Tringali’s impact on Stavros and the disability community at large is immense, and his legacy will endure as a testament to the unwavering fight for the rights and inclusion of people with disabilities who are as determined as he was to live independently.”

A colleague of Joe’s wrote that Joe is “a shining example of what life could be when we give each other a chance to be their best self. His memory will carry on as we advocate for people with disabilities wherever they are.”

Artist Amy Kerr painted Joe’s portrait (below) as part of a body of work she titled “I am More.”

On to the next unfathomable loss. Last fall I completed the portrait, “Paul with father and sons,” the first family portrait for I Am More. The subject Paul wished to include his father, Paul Sr, and his three sons at the family homestead on the porch where Paul Sr rocked in his chair and told me the history of his family moving to the property and of all the generations who had grown up there. By chance, he is also a whale guy, like Iain, who started out at the New England Aquarium and went on to found Gotham Whale in NYC. He was recently the subject of a documentary along with Roger Payne, founder of Ocean Alliance, and will be in an upcoming South Korean documentary along with Iain. What I didn’t reveal in that post is that at the time of the portrait, Paul Sr was in treatment for cancer and it had taken an unfortunate turn.

After receiving the news that his cancer was untreatable I made a plan with Paul to finish the portrait in time for his father to see it in person. They drove a van with the whole family to our house, but by the time they arrived Paul Sr was exhausted from the drive and the pain. He rested downstairs while Iain and I took the portrait off the wall and carried it downstairs for him to see.

As with Joe, I never heard a complaint from Paul during his visit. He beamed and joked with his grandsons, and shared whale stories with Iain. He spent Thanksgiving in his family home and passed on December 10th.

The individuals I meet through this project are each a gift. They have suffered, but their impulse is to give and to live. I will keep trying to spread their messages because, as Iain said, “Joe would want you to keep going.”