171 – Dan Habib of Concord, NH, Father of a Son with GNAO1 & Award-Winning Nationally Recognized Documentarian

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring today’s Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.

Dan Habib: One of the things that we came to that I think has really helped us, and I hope others in your listeners maybe can adopt some similar agreement, is we would not worry more than six months out in our life. We would only freak out about things that were in the next six months.

Because if your kid’s in elementary school and you’re worrying about what it’s gonna be like when the kids are going to parties or dating in high school, it’s completely overwhelming, and you just can’t sleep. So we’ve had this agreement that we’ll only worry about six months out.

Tom Couch: That’s our guest this week, Dan Habib. Dan is a photojournalist and prolific filmmaker who, along with his wife Betsy, has two children, Isaiah and Samuel. Samuel was diagnosed with cerebral palsy. Dan directed and produced an award-winning documentary called Including Samuel. We’ll hear about all of that and more on this Special Fathers Network Dad to Dad Podcast. Say hello to David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.

And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search “dad to dad.”

Tom Couch: And now let’s hear this truly interesting conversation between Dan Habib and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Dan Habib of Concord, New Hampshire, who is the father of two, inclusive communities project director at the Institute on Disability at University of New Hampshire, and the creator of a number of award-winning nationally broadcast documentary films: Including Samuel, Who Cares About Kelsey?, Mr. Connolly Has ALS, Intelligent Lives, and many other short films on disability related topics. Dan, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Dan Habib: Oh, it’s great to be with you today, David. Thanks for having me.

David Hirsch: You and your wife, Betsy, have been married for 29 years and the proud parents of two boys, Isaiah, 24, and Samuel, 21, who was diagnosed with GNA01, a rare neurodevelopmental disorder.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Dan Habib: Wow. A lot to share about my family. I have a great family. So I grew up in Highland Park, New Jersey, right across the river from Rutgers University. It was a very diverse, tight-knit community. I felt very well supported by my parents, Miriam and Stan Habib.

I have two siblings. My older sister, Debbie, is about two and a half years older. And I have a brother Josh, who’s three and a half years younger. I think the thing I recall most from my childhood was the incredible encouragement our parents gave us to pursue our interests, whether that was sports or creative interests, in my case photography.

You may not be surprised that I was the family photographer from a very young age and built a darkroom in my basement. They were helping me take classes at Rutgers University by the time I was in college. They instilled a sense of confidence and a sense of belonging in us from a very early age. They were just an incredibly supportive family. And thankfully my parents are in Boston, still alive at the age of 90 and 91, and my siblings and I are all very close still.

David Hirsch: Well, thanks for sharing. Very inspiring, to know that you’ve had that level of support. And it’s a blessing to have your parents, in their 90s. So out of curiosity, what did your dad do for a living?

Dan Habib: My dad was a professor his whole life. He was a professor at City College of New York for most of his time. He very proudly taught an incredibly diverse group of students computer science.

I remember one of my favorite things my dad ever told me was when he was just getting into computers, chip technology before we had computer chips. The kind of computer he would work on was bulbs and this old technology. He said if what we can now contain in our wristwatch—the same power to power a computer technology like that would have had to be cooled by Niagara Falls and as big as the Empire State Building. And I just loved that analogy.

So he was a teacher. He was a very great teacher and a very compassionate teacher. My mom was a social worker her whole life, so they very much brought home the value of supporting and encouraging people around them.

And social justice was always a very strong force in our family. They were marching with Martin Luther King in the 60s. They were very, very progressive, and are very progressive activists, and that certainly had a big influence on us.

I also felt like they had a very strong relationship. And that was an important model for me, to see two people so strongly in love who could work out problems together, sometimes in public, in front of us, but more often in private. I think that was really important to see that. I think my parents really worked as a team, and that’s a model I think my wife and I have certainly tried to emulate as well.  

David Hirsch: Yeah, they sound like extraordinary role models. What a blessing. My recollection was you went to the University of Michigan, and you took a degree in political science. I’m wondering, when you graduated, where was your career pointing? What direction did you go in?

Dan Habib: Well, although I majored in political science, I probably also majored in working at the newspaper—although I didn’t get any credit for that. I was living at the daily newspaper, the Michigan Daily, for three and a half years of my four years in college. I left do other things my last semester.

So my career started pointing very strongly towards photojournalism pretty early into college. I ended up getting an internship at the Oregonian newspaper my junior year, and I knew late into my college years that I wanted to be a photojournalist. I was very directed in that way.

Fortunately, I actually ended up traveling after I graduated. I saved some money, house painting, and decided to travel to China, because I had met a Chinese journalist during my internship at the Oregonian. Xi Al Ping [?] and I traveled in China doing stories about the modernization of China. I was taking pictures, and he was writing.

A month into that trip I bumped into this lovely American woman. Long, long story short, that was Betsy, and she ended up joining us for the next two months. We ended up staying together when we got back to the United States. So not only did I advance my photojournalism career by going to China, I met my life partner, who was from Connecticut and was traveling on her own in China at the same time.

So that was obviously a very formative time in my life, and it helped me get my first job in newspapers here at the Concord Monitor newspaper in Concord. That’s what brought us to New Hampshire.

David Hirsch: Would it be safe to say then, Dan, that your biggest takeaway from your trip to China was meeting, marrying and becoming Betsy’s husband?

Dan Habib: Oh, of course. Yes. There’s no doubt that that was the biggest takeaway. But even during that time, there were some other really important moments of just experiencing a culture that was so different, of going into these villages where they’d never seen Americans before, and of really pursuing photography in a very deep way. I mean, all those pale in comparison to meeting Betsy, but they were all very important formative pieces as well.

David Hirsch: That’s fabulous. And I remember that you had been the photography editor at the Concord Monitor in New Hampshire, and then you became the National Photography Editor of the Year. And you’ve actually judged Pulitzer Prize work as well.

Dan Habib: Yeah, for my first four years at the Monitor, I was a staff photographer. I loved doing just the work. And you may know that we have the New Hampshire primary here, and I loved the political coverage that that brought. My first week of work actually was photographing the New Hampshire primary.

I remember Mike Dukakis and George Bush the first. And Al Hay coming out of an elevator and jokingly threatening to punch me in the nose when I took his picture. Just funny, great moments. But after four years, I left to do freelance, and I did magazine work for about three years.

Then when a job opened up to be photo editor in 1995, I jumped on that and had a great 13-year career there as a photography editor. We were a very strong photo paper, and we got a lot of national recognition and, and ended up winning…I judged the Pulitzer, and then one of the photo essays I helped edit by Preston Gannaway actually won the Pulitzer. So we a great run that was really exciting.

David Hirsch: And how did that work lead to the work that you’re doing now?

Dan Habib: Well, that is where life took a very interesting and surprising turn. Samuel was born in 1999, and as you said, he’s our second son, after Isaiah. So Isaiah was always the one that was ahead of the curve. He was walking and talking—literally at about 10 months, he took his first step and started saying his first words. So he was this trendsetter in our family for developmental excellence, right?

When Samuel was born several years later, it was a perfectly normal and beautiful birth. The first few months were totally beautiful—and sleepless, but that’s normal for a new parent. But a few months into his life, we started realizing he was not developing in a typical way.

And my wife, as I’m sure is the case in many families, was the first to notice. And she said, “I’m a little concerned. He’s not really trying to roll over or sit up.” At four months or so, he wasn’t babbling like Isaiah used to verbally. So we did what I’m sure a lot of families do—we called our pediatrician. And he said, “It’s probably nothing. Kids develop in all different ways. But let’s bring in early intervention just to have a look and make sure things are going okay.”

Well, you know, long story short, they were obviously a little concerned also when they were assessing Samuel, and they had us see a neurologist. And by about a year into Samuel’s life, we were told that it looked like he had cerebral palsy, after a lot of tests.

We didn’t really know the underlying cause of that. They started doing all these blood samples and skin samples and samples of Samuel, sending them to labs all over the world. All we knew was that we were hoping to get that call, that everything would be fine, if we just gave them this supplement or this medicine. But that’s not life. You know, life isn’t so predictable.

So the reason that led to the next phase of my career is that Betsy first found out about a leadership program called the Leadership Series here in New Hampshire. It’s actually run by the Institute on Disability where I work now. And she took this year-long leadership series for families around disability rights, disability advocacy, learning how to navigate the educational system, the healthcare system, the legal system. As you well know, all these are systems that we are not born to navigate, right?

After she finished it, she said, “Dan, you have to do this. If we’re gonna stay on the same page, if we’re gonna stay strong as a couple, we need to have this shared experience of this leadership series.” And I did it the following year when Samuel was about two, two and a half, and both of us came out of it with this overwhelming feeling that more than anything we wanted a vision for Samuel that was not about fear and panic and stress. We wanted a vision for Samuel that was about hope and optimism and a full life.

And that meant that we needed to make sure that he felt like he belonged, that he felt like he belonged in all aspects of society. Just like I said, I felt like I belonged through my parents’ support. And we couldn’t imagine a way that he would possibly feel like he belonged if he didn’t belong in his own local school.

So that’s when we became very strong advocates for inclusive education. It’s also when I decided to start making a film about Samuel. He actually got very sick around that time, when he was about three. He had a tonsillectomy, a planned tonsillectomy, that went badly in the end, and he aspirated some blood and developed a very severe pneumonia at about three and a half. And we now know, probably more than we did at the time, that it was a life-threatening moment in his life. Thankfully, he got through it.

But his incredible neurologist, Dr. Filiano, who was with us in the ICU and continues to be part of our team, said to me at that time in the hospital, “Once Samuel has stabilized, have you ever thought of telling your own family story through your photojournalism about what it’s like to be a family of a child with a chronic health condition or a disability? So I just started taking some pictures in the hospital, just to burn off stress more than anything.

But that ultimately became, three years later, the film Including Samuel. I decided to do it largely in film, because that was a medium I knew would resonate, especially with young people, more than still photography. When that film came out in 2007, it pretty immediately took off through word of mouth. It got translated into 17 languages, and started going all over the world as a catalyst for inclusive education.

The Institute on Disability and I agreed that I would transition into a job there and really continue to create social change through films, through educational materials, through public speaking, and through all the social media work we do. And I’ve been doing that for the last 13 years.

David Hirsch: What is Samuel’s diagnosis, and how did it actually come about? I remember you telling me it took a very long time to get the actual diagnosis.

Dan Habib: Well, I’m sure many of your listeners are familiar with the Human Genome Project and the way that genes have been mapped over the last decades and more.

When Samuel was born in 1999, that didn’t exist. So there wasn’t the kind of genetic testing available that would’ve maybe said with more clarity why Samuel had cerebral palsy after a completely normal birth. When people think of cerebral palsy, they often associate it with a birth injury.

But I think, I think the stat is close to 80% of people with cerebral palsy, it’s not caused by a birth injury. It’s caused by some underlying mitochondrial or genetic disorder. So we had what I would call largely a false diagnosis, when Samuel was about seven or eight years old, of a mitochondrial disorder. Which, for those of you who remember your high school biology, it’s how the cells turn food into energy, right?

It wasn’t until Samuel was 19 years old and we were able to get some additional genetic testing done at the urging of his neurologist, again Dr. Filiano, and it showed that he had a very specific genetic mutation called GNAO1 neurodevelopmental disorder. And I’m sure nobody’s probably heard of that, because there’s only a few hundred people in the world that have been diagnosed with it, although there are probably tens or hundreds of thousands perhaps the people that actually have it, and it’s not been diagnosed.

So that actually has been very helpful, because we are now part of a community on Facebook and through Zoom webinars, and even in-person meetings when that can happen, of people that experience GNAO1. Samuel has become a real role model within this community, because he’s doing some really great things in his life that I’m sure we’ll touch on.

It’s been helpful to get this actual diagnosis. It hasn’t changed the treatment that much to support Samuels’ health—maybe in some small ways—but mostly it’s becoming part of this community that has been very, very powerful.

David Hirsch: Well I think being surrounded with others that have a similar situation, and optimally those that are a number of years ahead of you, is of tremendous value.

Dan Habib: Oh yeah, for sure. A, you’re not on your own, so you don’t feel as isolated. And B, you have people that can relate directly to what it is that you’re experiencing, as opposed to, oh, just getting lumped in with other families that have special needs—whether it’s Down syndrome or autism or whatever it might be.

David Hirsch: Going back to when you were starting to learn about Samuel’s situation, can you remember what concerns or fears you and Betsy had early on?

Dan Habib: Let me count the ways, as Betsy says. Actually, in the film Including Samuel, during an interview I did with her, “How’s he gonna have friends when he can’t just run outside and play? How’s he gonna go to college when he can’t hold a pencil?”

I mean, everything just felt completely overwhelming to us as we were looking forward to his future, in addition to the very real and immediate concerns we were having about his health, his nutrition, he was failing to thrive at one point. It was just overwhelming. How is he gonna participate in school? How are we gonna navigate transportation when he starts using a wheelchair? All these things.

One of the things that we came to that I think has really helped us, and I hope others in your listeners maybe can adopt some similar agreement, is we would not worry more than six months out in our life. We would only freak out about things that were in the next six months.

Because if your kid’s in elementary school, and you’re worrying about what it’s gonna be like when the kids are going to parties or dating in high school, it’s completely overwhelming, and you just can’t sleep. So we’ve had this agreement that we’ll only worry about six months out.

It doesn’t mean we don’t save for college. It doesn’t mean we don’t think ahead in our life. But we had to find some way to contain the fears, because like I said, it was just so overwhelming to think of all the different ways that Samuel’s health could be in danger, his social life could be undermined, his education could be undermined, his future independent living, college, employment—all those things. And so we’ve been trying to just take it one step at a time.

David Hirsch: That’s great advice. And it reminds me about the importance of living in the present—not getting too far ahead of yourself, and also not dwelling on the past. You can’t change the past, and many of the things that we worry about or are concerned about in the future never come to pass. So that’s not energy well spent. So that discipline that you were talking about, of thinking in, say, six month increments, I think is for your benefit, everybody’s benefit, and it’s a better use of your time and energies.

Dan Habib: Right. And I think the other benefit to that is it really allows you to focus on the joys of the moment. I mean, it’s easy to get lost in fear and worrying about the future. It’s harder sometimes to just think of what’s happening right now in our lives, and how amazing and beautiful this is, and to think of the incredible strength and persistence Samuel is showing, or my older son Isaiah, for that matter.

And not to say I do that all the time either. I can’t say I always succeed at that. But I think Samuel has helped us actually slow down in some really important and powerful ways, to be in the moment and show patience. And I think that has also impacted how we’re able to I hope show patience and empathy for other people outside of our family more than I ever was capable of.

I mean, my wife and I always say, Samuel’s disability has brought so many good things to our family. Yes, it’s brought some challenges that are very real, but it’s brought us, on balance, enormous positive things into our life that we never would’ve experienced otherwise.

David Hirsch: Well, it’s a blessing. And at the risk of focusing on the negative, what have been some of the bigger challenges that you and Betsy and Samuel have faced?

Dan Habib: I think by far the biggest is health concerns. I mean, Samuel’s genetic disorder brings with it some very specific issues around his motor control. So we’ve had to navigate equipment like wheelchairs and walkers over his life. He has a g-tube, a feeding tube, because he has never been able to eat safely. So that’s been something we’ve had to be careful with.

He’s had tremendous motor control issues, so we actually elected—he elected ultimately when he was 19—to get brain surgery, something called deep brain stimulation surgery. He has another implant for a baclofen pump, which helps him relax his muscles.

And then he’s had more hospitalizations than I can count for stomach issues and respiratory issues. And, knock on wood, he’s been in a good place right now. He’s had seizures and, and that’s probably a really big one, that he could have a seizure at any moment.

So I’m painting a picture of him as if he’s this walking basket of fragility, but he’s incredibly strong and funny and has a tremendous personality. Maybe we’ll talk more about it. He’s in college, he’s graduated from high school. He’s a filmmaker. He’s doing all these incredible things. But yeah, there have been a lot of challenges.

And then there’s the physical accessibility. We ended up having to move out of our initial home that we owned because it was a two-story home. Again, it turned out to be a beautiful thing, because now we have a home on a much more gorgeous piece of land overlooking the river valley that we bought, and we made it totally accessible. But whenever we go out and about, we’re navigating accessibility issues. When we travel, when we fly on airplanes, that’s always a challenge.

And then I think finally the big issue is low expectations from people, who look at Samuel and they see a young man who doesn’t speak in a typical way or move in a typical way. They may start talking to him like he’s a five-year old, and we’re like, “Uh, Samuel’s in college. He’s graduated from high school. You can speak to him like any other-21-year old.” And some people get it right away, but most people don’t. They just can’t shift their mentality

And frankly, even some of my extended family members have had trouble presuming competence. That’s a phrase I like to use: presuming competence. Your safest and best thing to do is to presume that everyone around you is competent. Treat them like they’re competent. And if they need things explained in a different way, or broken down into plain language, they’ll ask for that, or somebody will. But in the meantime, just treat them in an age appropriate way.

I hate when people start assigning things like he’s at the developmental age of a five-year-old. I mean, that’s such a ridiculously random thing to say. You get me riled up when I start talking about low expectations because, after health, it’s probably the biggest challenge I think people with disabilities often face.

David Hirsch: Well, you raise a really important issue. You never want to put a cap on a child, whether they’re typical or atypical, for that matter. You don’t want to be unrealistic either. So it’s a balancing act, right? On one level, you don’t want to have any limitations, but on another level you don’t want to have unrealistic expectations either. I’m wondering if you can speak to that.

Dan Habib: Well, it’s tricky because “unrealistic” is a very subjective thing. Also you want to be consistent in the way you treat kids. For example, I was doing an event once, and somebody in the audience said something similar, like, “I teach kids with autism, and some of them want to be a veterinarian. They’re 12, 13 years old, let’s say, and some of them want to be doctors or lawyers. And, I mean, isn’t it unrealistic to say that they could do that?”

And I say, you know what? My son Isaiah is 13, and he wants to be a short stop for the Red Sox. Am I gonna tell him, “Isaiah, that’s completely unrealistic—don’t even dream that”? No. Dreaming and having aspirations is part of adolescence. It’s also what puts you on a certain path towards your passion.

So somebody that might want to be a doctor, maybe they can’t achieve being a doctor, but maybe they could be a licensed nursing assistant, an LNA, or maybe they can have a job that’s in the medical field in some way that’s not necessarily being a doctor. Or same with a veterinarian. Maybe they become a vet tech.

So I don’t think it’s reasonable to squash the dreams of any kid, even if you think they may not be able to achieve it. Because that is part of the developmental process. That is part of finding your passions. So yeah, I’m a big believer in challenging the notion of “unrealistic” whenever possible.

David Hirsch: So I’m sort of curious to know what impact Samuel’s situation has had on his older brother, on your marriage, or on the rest of your family for that matter.

Dan Habib: Hmm. You ask a lot of big questions, David. It’s okay. It’s good. I don’t like to speak for other people, but I will tell you what my perception is, kind of based on conversations we’ve had.

You know, Isaiah’s 24, and he could certainly speak to this very eloquently. They have a very close relationship. They always have. There’s a lot of emotional connectedness between the two of them. We have tried hard as parents to give Isaiah what he needs, which is also not a small thing. I mean, he’s also a kid that has taken his own path and has not necessarily always aligned well with traditional education or traditional social situations.

He’s a very active kid. He’s a rock climber, and he’s biking across Arizona right now as we speak. He’s gonna go to Alaska to salmon fish this summer. He also spent a year working with kids with emotional and behavioral disabilities, coming out of college last year. So he’s a very thoughtful, complex, intellectual, very compassionate person.

So he and Samuel are very different, as a lot of siblings are. They have different interests and passions. Samuel’s a huge sports fan, as is Isaiah, but Isaiah will not sit and watch a three hour NASCAR race like Samuel would. But that’s okay. Siblings have different passions.

During adolescence, or even younger, there were times where we were obviously very absorbed in Samuel’s healthcare and a lot of medical crises, and I think that underlying stress in our family was certainly affecting Isaiah. We realized at some point we had to just be open about the stress we were feeling, because we realized he was feeling it too.

And we can’t just deny the reality that there’s a lot going on in our family around stress, whether it’s about health, about education, and Samuel does take up a very large amount of our energy to support his life. And so some of that meant making sure we took time away solo with Isaiah. I took him on some work trips or fun trips. We would go out for meals together, to movies. And my wife did the same, taking trips with him. So we really tried to give him some very unique, specific attention.

You know, in terms of the marriage, I think, thankfully, we’ve been tested. I mean, there’s no doubt we have been tested through a lot of stress. And I’d like to think that we just have a strong relationship built on a lot of trust, a lot of communication, a lot of love, and a lot of fun.

We love being together. We love traveling together. You know, I’m so glad to say that Betsy and I love to get away together as much as we can, just the two of us. I think that’s a good sign. I think all that has helped us—especially the open lines of communication—to deal with some very difficult decisions, some very difficult things we’ve needed to manage around health and finance and jobs.

And we don’t always get it right, you know? But I think we work through the process, and we’ve increased with a lot of respect, and we’ve worked together to strengthen our relationship. Samuel has very much touched in very deep ways our entire extended family and circle of friends. So I can’t even put that into words really, how profound that feels, to know that Samuel’s life experience has been immeasurable to his family, to his friends, to his community—well beyond just our immediate family. And part of that is just because of who he is. He’s got an incredible spirit, and he’s an amazingly compelling person.

David Hirsch: Well, let’s use that as a segue to talking about the documentary Including Samuel. You had indicated that it came out in 2007, so he would’ve been probably eight years old by the time the movie was produced.

And you used a lot of clips or film that you had recorded from a relatively young age of his. It was very touching. And I’m wondering—that seemed like a turning point, right, in your career and your family’s life and the trajectory that you’ve been on for the last dozen or so years.

I’m wondering what that felt like, documenting a very personal experience—your son, the relationship with his brother, with his community, with your family—and then sharing that story, because most people can be very private about things.

And you’ve sort of flipped that script, if you will, and said, not, “Look at me,” but you are telling the story through your son in a very provocative way. And it works. It’s amazing. So I’m wondering if you can share with our listeners, what was it that started out as a kernel, if you will, that blossomed into the film Including Samuel?

Dan Habib: Sure. Well, we were talking earlier about ways that my relationship has been tested, and how we’ve kind of navigated some of this because of Samuel’s complexity. And I’ll say that making the film early on was not all easy, especially in the sense that I’m a very extroverted, open person. My wife is more private than I am.

So when I first started this notion of making a film, it happened very organically. I just starting to take some photographs of Samuel, and I had some other people when I started documenting that ended up being in the film as well, four other families.

Throughout it all…I can’t…David, I don’t know what I can describe it as, other than I just felt obsessed with getting this film made. I had a full-time job. I was director of photography at the newspaper the entire time. So I was getting up at four in the morning to work on the script. I’m taking time off from work to film and shoot.

It ended up, we’re very proud of the film and the impact that it’s had over the last 12 or 13 years. But it was not like there was a roadmap from the beginning. There wasn’t.

Film excerpt:

Dan: My name is Dan Habib. My wife Betsy and I have two boys, Isaiah and Samuel. When I became a photojournalist 20 years ago, I did a story on one of the first elementary schools in New Hampshire to try inclusion, or “mainstreaming,” as it was called at the time. At Beaver Meadow Elementary, kids with disabilities began to join the same classrooms as kids without disabilities. Now my son goes to Beaver Meadow. He has a disability, and I think about inclusion every day.

Betsy: When Samuel was a baby, and we first started realizing that he might have a disability, I remember being really afraid because all the things you imagine for your child were things I was afraid about. How could he run around on the playground and play kickball when he couldn’t run?

David Hirsch: I want to talk about some of the other work you’ve done, and I know we have a very limited amount of time. One of the pieces—and thank you again for sharing these with me—is Who Cares About Kelsey? It’s about this young woman, primarily in high school, and then a little bit beyond her high school experience at the end?

I thought it was a very powerful story about what a young girl goes through, a young adolescent goes through. This just happens to be about a young woman. And I’m wondering, what was the impetus for doing that project, and how did you get the family to agree to come into their lives? Like in a complete way, in a 360 way?

Dan Habib: The impetus was when Including Samuel came out, in 2008, 2009,  and it started having this pretty surprising national and international impact, I became even more strongly committed to this notion of inclusive education, that kids with disabilities deserve to be learning the regular curriculum alongside their typical peers.

I did tons of research—my journalism background helped with that—and I know that kids with disabilities who are included in regular education and regular schools end up statistically with better outcomes when it comes to higher education, employment, behavior, communication, social networks—across the board. And there’s really no evidence to suggest that segregated placements or separate schools statistically result in better outcomes.

Not that you can’t have those things, if your child has that experience, but as a journalist, as a researcher, as a documentarian, I’m a big believer in inclusive education. And that extends to the kids with emotional and behavioral disabilities, what you might call hidden disabilities, like autism, ADHD, PTSD from difficult childhood experiences, on and on, mental health issues.

So I wanted to do a film that showed, what does it look like? What does it take to support a young person who has very complicated emotional and behavioral disabilities in a regular school? And after doing a lot of research, I was fortunate to find a school just an hour from my house in Somersworth, New Hampshire, that was seen as a national model for using things like positive behavioral supports, as opposed to the disciplinary kind of “three strikes you’re out” approaches. They would try to understand the source of challenging behavior and support kids in having positive behavior, helping them create these pathways to a future that they could envision for graduation, for college, for healthy adult lives.

That’s a very intentional process. It takes a lot of leadership and a lot of organization within a school to do that well—and this school was doing it well. So I spent three months just getting to know the school, and then I started interviewing young people, one after another, to see who might be a focal point for my storytelling.

Then I met Kelsey, and immediately I was captivated by her. She was very open about her life. She was talking about her time on the cheerleading team and getting kicked off the cheerleading team. And very difficult topics, like self mutilation. She was cutting herself. She told me about the substance abuse challenges in her family that she had been through. She was very open, very quickly, and also very comfortable around the camera.

So I decided she would be the best person for the film. I told her, “This could be a long process. I might film you for a year.” And she was game. And I talked about why I was doing it—to show that students like her that have been through a lot of challenges can still be successful in school, And she had a great team around her in the school, a remarkable team.

Film excerpt:

Kelsey: Freshman year I came here. They didn’t really know my situation. Sophomore year wasn’t good. Second sophomore year wasn’t good. I got suspended for the intent of selling and possession of a controlled substance. They were gonna report me to the police, but they didn’t, because it was my own prescription.

I don’t like taking my medicine. It makes me not want to eat, not want to sleep. When you have ADHD, you suppress a lot of things, like thoughts and anger and energy. And then one day, they were like, “Shut up! We can have lots of dreams and hopes for you.”

I wanna be a police officer. I want a family. I wanna be successful in life.

“But you are the one that plays a critical role. What’s your vision? What’s your passion? We’ll determine whether or not you achieve those dreams.”

“What do you have in trouble on?”

32 plus 36 plus 35.

“Awesome. Great job.”

David Hirsch: So let’s talk about another piece. This was really moving: Mr. Connolly Has ALS. There’s this beloved high school principal who goes from being this very vivacious guy involved in everybody’s lives and very sincere, to getting this ALS diagnosis.

You know, anybody who knows anybody that’s had ALS knows that the story doesn’t end well, and it usually doesn’t last long. And I thought you did a masterful job of capturing his story. I’m wondering, what was it that motivated you to tell that story, and how did it transpire?

Dan Habib: Yeah, that was a very moving film and a very personal film to make, fairly recently, just a few years ago. What was amazing about the way that unfolded is I had never planned to do that film. It wasn’t something I had been seeking out. I was actually in the middle of making my most recent film, Intelligent Lives, which was a huge undertaking.

I was with Samuel one day in the Concord High School parking lot, getting ready to support him during a homecoming parade, and his principal, Mr. Connolly, came over, and they started chatting. Samuel uses a communication device mounted to his wheelchair, and Mr. Connolly was also using a communication device, because at that point he was pretty well into his ALS and had lost his ability to speak.

And I just thought, this can’t be happening anywhere else in in the world, perhaps, that a student and his principal are both speaking to each other with communication devices and gestures. And it just blew my mind.

Now at this point there had already been a really excellent series of stories in the Concord Monitor, our local newspaper where I used to work, about Mr. Connolly’s ALS. He was very public in the community. They were having big fundraising events for ALS. He became a really powerful spokesperson. So it wasn’t like he had been hiding any of this. He was very out there.

But I also knew his primary mission was not to be out there—it was to be a principal still. He was still the principal of the school. So I thought, maybe I should do just a short film about this, because this is just so powerful. And I knew Mr. Connolly. I’ve known him for 10, 15 years from my work, just being a journalist, and through Isaiah, my older son, being in high school.

So I thought, he is such a student driven principal. He loves the students. Maybe if I can come up with an angle that’s very student driven, he’ll be much more on board. So I thought of this idea, that we would hand out an index card to all 1500 kids in high school, and have them write down one question they wanted to ask Mr. Connolly. It was obviously very clear at this point that his life was changing dramatically.

So we got probably 1200 questions back. I reviewed them all, and took them down to about a hundred. Then I reviewed those with Mr. Connolly. He had at this point agreed to be on board with this project, because it was so student driven.

Some of the questions were very intense and difficult. One young woman asked, “Have you ever considered killing yourself?” And I remember that Mr. Connolly’s assistant was like, “We can’t ask him that.” And Mr. Connolly immediately said, “I want to address that question.” And that was when I knew he was on. He was really engaged.

So we spent a day where we had one student after another, about 50 students, come through on a stage and ask him these questions. And I had that all professionally filmed. Samuel was one of the people that asked a question.

I had what I still thought was gonna be a short, maybe a 10-minute kind of quick film. I sent it to my editor. After he reviewed the material, he said, “Dan, this is an amazing body of work. This could be a very powerful film.”

So what I thought was gonna be maybe a month long editing job, became about a six to eight month editing job, plus raising more money. It came out, and ended up being nationally broadcast on public television, being in film festivals, and then most importantly, it premiered in Concord. And it had a huge impact in Concord while Mr. Connolly was still alive.

He has passed away, sadly, but as you said somewhat predictably, from this disease. And he was there for the premiere. He was able to speak, you know, an incredible statement. His whole family was there, and they have told me that the film means a lot to them, because it captures his life in like a time capsule in a way that they can share with their kids as they grow up, their grandkids.

And it’s really been a very, very important project for me. And it’s freely available on YouTube. Anybody can watch the whole film, because we want it to be out there very publicly.

I should say that Samuel, as you saw, also ends up being an important part of the film, because there’s a dramatic difference between being born with a disability and having that experience throughout your life, and acquiring a disability like Mr. Connolly did.

But what was so profound in the film is that Mr. Connolly—who was an incredible leader for inclusive education and creating a school where everyone felt like they belonged, regardless of their sexual orientation, their ability, or their country of origin—that inclusivity came back to benefit him when he became a person with disability.

So other principals and administrators have said, “This is the most compelling film you’ve ever made about inclusive education, because I can relate to it as a principal or as a superintendent.” It’s been very powerful for those audiences.

David Hirsch: Yeah, well, it literally brings tears to my eyes to recall the movie.

Film excerpt:

Good morning and welcome to the Concord High School class of 2012 graduation exercises. Concord High principal Jean Connolly, known for his legendary energy.

“What was your first reaction when you found out you had ALS?” I was in shock. It was like being in a bad dream, and I wanted to wake up. I remember leaving the doctor’s office and my wife getting sick in the parking lot.

“Mr. Connolly, what’s your biggest fear? How does it feel, knowing you could all end at any time.” Yeah, I look at every day as a gift, and I want to make every day count.

David Hirsch: Why don’t we talk about the Disability Roadmap, which is the project that both you and Samuel are working on. You’re co-directors, and you’re the producer. What’s the backstory on that, where is it, and what’s your expectation for it?

Dan Habib: Sure. The way that that project came about is…when I’m usually starting to finish a film, I start thinking about the next project. It’s an enormous amount of work and fundraising and a labor of love to get a film made, and any filmmaker will tell you that. So when Intelligent Lives, my most recent film, was coming out in 2019, I started thinking about the next project.

And you know, Samuel has found a real passion for film and video production. He really, really enjoys the medium and has made some short films. He made a film about the disability rights leader, Judy Heumann, the legendary disability rights pioneer, that ended up being in a film festival in Moscow, Russia. It’s called The Breaking Down Barriers Festival. He loves the medium, and we love spending time together, and we love traveling.

But most importantly, he is trying to figure out what it means to transition to adulthood, now that he’s 21. But he’s been thinking about this for a long time. You know, what’s he gonna do for higher education? How’s he gonna start dating? How’s he gonna have sex? I mean, just to be perfectly candid, it’s stuff he talks about, and he wants to understand. Where’s he gonna work? Where’s he gonna live? These are questions that are always on his mind, as they are with most 18, 19, 20-year-old people, right? I mean, he’s a typical guy in many, many ways.

So we just came up with this notion together that we would document his transition to adulthood—both through my filming and his own perspective—mounting two GoPro cameras to his wheelchair, one facing out, one facing in. Not all the time, but for a lot of our life and journeys.

Meanwhile, we would work together to research people he wanted to interview about their own transitions to adulthood. And we wanted to find an incredibly diverse group of people, not just in terms of disability, but in terms of their work experience, their educational experience, their relationships, their sexual orientation, their ethnicities—all these things.

He and I together came up with a group of nine people so far that he has interviewed. It’s been pretty incredible that he’s been able to do this kind of work. We’re just really having fun, kind of going forward in this process and trying to think about how to figure out how to navigate to adulthood with the guidance and wisdom from all these other people?

David Hirsch: I love it. What an amazing father-son project to be working on. So under the banner of advice, I’m wondering if there’s an additional thought or two that you’d like to share with our listeners.

Dan Habib:. I guess I’ll just tie it in to my most recent film, Intelligent Lives. The whole notion of that film was to question anybody who tells you that things like intelligence or capability can be measured. That film takes a very hard and critical look at IQ testing. It looks at people with autism and intellectual disability and says, “They’re capable of being fully included in school. They’re capable of going to college and having relationships.”

I think it’s much more dangerous to presume incompetence than it is to presume competence. The least dangerous assumption you can make about someone is to presume competence. So that’s what I feel is really a critical way to look at the world through that lens.

And I was very influenced in a similar vein by somebody that we interviewed for Including Samuel whose name is Norman Kunc. He’s a really incredible disability rights advocate based in Vancouver, Canada. He talks about “seek the story in the stranger.” And what he means by that is when you don’t understand someone, when you don’t understand the way they speak or navigate the world, or the way they act, get to know them. You know, show patience, show curiosity, show compassion, but show respect, and seek that story in the stranger.

And I think that has very much influenced the way I navigate, not just my film work, in trying to tell these very complicated human stories, but in the way I navigate every day of life. I look at the people around me as amazing storytellers, and I can learn from them.

At times I’m very fortunate to be able to share their story with the world. At times it’s just a quick interaction in the grocery store, but that’s also really meaningful. So Samuel has taught me, and more people like Norman have taught me, far more than I will ever teach them. That’s all I can say.

David Hirsch: Well, thanks for sharing. So I’m sort of curious to know why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?

Dan Habib: I’d like to say that I have informally mentored some other people that have come into this. I have a friend right now who has a very young child with a disability. I remember that deer in the headlights look, you know, when people are trying to figure this out. I think you don’t want to throw too much at people too fast in terms of advice, because it’s just overwhelming.

We’re now 21 years into Samuel’s journey—our journey as parents. I was really overwhelmed for years, and still am sometimes. So I think that having somebody who has been through it and that hopefully can offer advice, but not too much advice all at once, can really be helpful.

So whether it’s in your network or more informally, I see real value in being there for other parents who are there. And particularly I think men have a harder time—I’m sure this will not come as a surprise you or anyone else—sharing feelings, sharing thoughts, sharing fears.

I think a lot of men have a “let’s just fix it” mentality. Let’s just fix this. I can fix this. And the women often—it’s stereotypical, but I think it’s true—are more willing to deal with reality and are willing to feel the emotion in the moment, and not just try to fix it, or ignore what’s going on.

So I think having someone I hope like me who can say, “It’s okay to go there and really talk about what you’re feeling in terms of fears too,” I hope it opens a door for them to strengthen their relationships and their parenting, and just having a way to vent really with somebody that kind of gets it.

David Hirsch: Well, we’re thrilled to have you. Thank you for being part of the group. Let’s give a special shout out to James Krump for helping connect us.

Dan Habib: Yes, please. James, thank you for connecting us. This is the way the world works sometimes. You just meet kindred spirits, you make connections, and good things happen.

David Hirsch: Absolutely. So, is there anything else you’d like to say before we wrap up?

Dan Habib: I guess I would just say for the fathers out there, particularly those who have young kids, I’m very passionate about school and education and inclusive education. Go to those early meetings at the school. You know, be there together with your partners if you’re married, or with somebody. Be involved early on in the educational journey.

Because I think a lot of fathers tend to cede that to the moms, and I think that’s a mistake on a lot of levels. So if you can, if you have the flexibility in your life, become involved in your kids’ education. And go to the school early on, because for many families, it’s gonna be quite a battle and a journey to give your kids the kind of access education they deserve.

And it needs to be a united front in the family. It’s too much to put on your partner to have them go it alone. It’s too stressful. It’s too difficult. That goes for healthcare as well, but right now I’m talking about schools. So that would be one thing is I really encourage the dads out there to become engaged in their kids’ education early.

David Hirsch: Yeah, a point well taken. In fact, the advocacy I’ve been doing the last 24 years boils down to one thing. If dads can only do one thing, it would be to be involved in the educational lives of their kids, typical or atypical. All the research supports that when both parents are involved, all the educational outcomes go up.

And a lot of the things that are holding children and families back—drug and alcohol abuse, team suicide and pregnancy, crime and incarceration—all those things go down or go away. I think we as men, as leaders in our families, need to take a greater sense of ownership, on average. So thanks again for emphasizing that.

Dan Habib: Yeah. I think I wouldn’t consider myself a leader in the family, per se, as kind of a co-navigator with my wife for sure. And I think also I have to acknowledge privilege. I’m a white man who’s fairly stable economically, and who had the benefit of an education that my parents paid for. There’s great privilege in that.

I think a lot of families are dealing with systemic racism. They’re dealing with economic pressures that I’m not dealing with. Some may be dealing with oppression around their sexual orientation, that I’m not dealing with.

So I just think it’s also important to not make it look too easy, and understand that there are gonna be people who are facing challenges that I don’t face. I honor that, and I see those as significant obstacles that I don’t have to navigate. So anyway, it’s important that we acknowledge that, I think, as well.

David Hirsch: Well, thank you. So if somebody wants to learn more about the Inclusive Communities Project at University of New Hampshire, your film work, or to contact you, how would they do that?

Dan Habib: Well, the best way is to just google my name, Dan Habib, and Inclusive Communities, and it’ll pop up to the website. But usually our current film has the most active social media presence, so for the film Intelligent Lives, the website, intelligent lives.org is a great place to go. You can contact us there. You can go into our social media: Facebook, Twitter, Instagram. That’s really the best place to go.

I hope people check out the films. We put a lot of great free material online for people to check out: short films, videos, resources. So I do work to improve the world, and it’s for no other reason. So I want people to really dive in and take access to it.  

David Hirsch: We’ll include as much as we can in the show notes, so it’ll make it as easy as possible for our listeners to follow up. Dan, thank you for taking the time and for the many insights.

As a reminder, Dan is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Thank you for listening to the latest episode of the Special Fathers Network, Dad to Dad podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support.

Dan, thanks again.

Dan Habib: Thank you, David. I really enjoyed it.

Tom Couch: And thank you for listening to the Dad to Dad podcast presented by the Special Fathers Network. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. Go to 21stcenturydads.org.

And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Also, please be sure to register for the Special Fathers Network biweekly Zoom calls held on the first and third Tuesdays of every month.

Lastly, we’re always looking to share interesting stories. If you’d like to share your story, or know of a compelling story, please send an email to David@t21stcenturydads.org.

The Dad to Dad podcast was produced by Couch Audio for the Special Fathers Network. Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.