A documentary chronicling former Concord High School principal Gene Connolly's ALS diagnosis premieres this week.
Connolly was diagnosed with the disease in 2014. In his final year at the school, Connolly gradually lost the ability to speak and to walk, but stayed on the job as long as he could. He retired last summer.
Concord filmmaker Dan Habib is the director of “Mr. Connolly Has ALS,” a 30-minute documentary that premieres Tuesday at Red River Theatres in Concord, and runs through Memorial Day.
All proceeds from the film’s at Red River will benefit the Connolly Tough fund, which helps the family pay for medical expenses not covered by insurance.
Habib joined NHPR’s Morning Edition to talk about the film.
When did you know you wanted to make this film?
The Concord Monitor had done a really nice series of stories when Gene, and I didn’t think I really had much to add to that. But there was one day in the fall of 2015 when my son Samuel and Gene were talking, and neither of them were using their voice. My son Sam has cerebral palsy, and uses a wheelchair. He has a communication device and Gene had his communication device. And the two of them were interacting with their devices and with hand gestures, and I just thought to myself this can’t be happening anywhere else in the country, where a student is talking with his principal this way. So at that point, I say maybe there’s something I can do to tell his story in kind of a unique way.
When you approached Connolly and his family about making this film, what was the response?
I think the family really deferred to Gene’s feelings about how much he wanted to put himself out there. And he had already been a very prominent advocate nationally and locally around ALS issues, so this wasn’t a huge leap for him. I was a little concerned he might be getting tired of being out there, doing interviews. But I thought maybe if this is a student-driven film and students play a large role, that he might be more open to it. So when I pitched it to him, I said I want to have every kid in the school ask you a question. We’ll narrow it down, and we’ll tape those questions, kind of like StoryCorps. Once he heard students were going to be driving the narrative, he was all in. And at that point, he was incredibly open and collaborative, as was his family, the whole way through the process.
Those student questions became the centerpiece of your film. Where did that idea come from?
Honestly, it just kind of popped in my head one day. I love StoryCorps and that method of just having average people talking to each other about really deep things. And I also thought here’s a school body of 1,600 kids, many of whom have seen Connolly go from an incredibly active, energetic, engaged leader, to someone who could no longer speak and could no longer walk, I thought this must be having a real effect on them. And they must have a lot of questions. There must be a lot of curiosity. And certainly that curiosity was tapped. In fact, when the questions started pouring in and I sat in this conference room with 1,600 questions, I was amazed at the variety of questions. And a couple of them were really tough. One girl asked have you considered killing yourself. It was such a powerful question that people who work with Gene said that was too personal. I said let’s let Gene decide. I showed Gene the questions, he helped narrow down the questions, and Gene immediately said yes to that question, and that was indicator he was ready to go deep with the process.
Some of the questions were incredibly insightful and incredibly candid. The principal obviously had a profound effect on these kids. What do you think they took away from that experience of putting together this film with you?
Because of my background in disability issues, I was very passionate about telling the story of what it’s like to acquire a disability. Most of my work and my own family’s experience with Samuel had been dealing with disability since birth. I think it’s a very different experience when you acquire one and for these students to see their principal acquire a disability, I’ll refer back to what Gene said, he saw this as an opportunity to open up a conversation about what it means to become ill, what is the nature of disability, how are you perceived when you acquire a disability. I asked him at one point whether people had started talking to him differently, like he was no longer intelligent because he couldn’t speak. He said he had noticed that, and that he had a lot more affinity for people with disabilities now. And so it was important for Gene to answer some of the questions that students had to allay their own fears about his life and where things were going. He kept an incredibly positive attitude and continues to this day through the process, while also being really candid about the loss. This is not something he’d ever wish for; it’s a tough balance to strike.
In the film, you talk about the concept that we’re all “temps,” all able-bodied people are just “temps,” and at some point, we’ll all acquire some kind of disability.
Right, that’s a phrase in the disability advocacy world where I circulate a lot, people call them “temps,” or temporarily abled, and I think it’s an important thing for people to understand when we talk about accessibility in our community, when we talk about health care, everyone has to remember that on any given day, they or someone in their family could acquire a disability, they could have a niece, nephew or grandchild born with a disability. Disability really touches all of us. I was hoping this story certainly would honor Gene’s legacy and certainly get around the issues of ALS, but actually elevate the discussion a little bit hopefully into the nature of how to live your life fully in the time you have left when you know you have a terminal illness, how to come to terms with death, how much a family becomes part of your care when you acquire a very serious disability and what the impact is on the family. There’s only so much I could do in 30 minutes, but I tried to hit on some of these big themes.
How’s he doing?
I ask him that question sometimes and I get that question asked of my sometimes. I asked him the other day and just typed out, “I’m doing the best I can every day.” The powerful and important thing is he’s still able to communicate. He needs complete physical support as most people do with ALS as their health declines, but the power of communication is strong, and his sense of humor is still completely intact.
This premieres Tuesday at Red River, but there will be other showings, right?
We have a couple of premiere shows which are sold out. We have a panel after each of those screenings on Tuesday night, where the whole Connolly family will participate, as we all some students in the film. And then there’s a run at River River through Memorial Day.