Documenting Neurodiversity: Advocating Accessibility Through Film, with Dan Habib | EDB 103
(19 mins) In this episode, Dr. Hackie Reitman continues his conversation with parent, filmmaker, and disability advocate Dan Habib. Dan is the creator of the award-winning documentary films Including Samuel, Who Cares About Kelsey?, Mr. Connolly Has ALS, and many other short films on disability-related topics. Habib is a filmmaker at the University of New Hampshire’s Institute on Disability. His newest film is Intelligent Lives. In 2014, Habib was appointed by President Barack Obama to the President’s Committee for People with Intellectual Disabilities—a committee that promotes policies and initiatives that support independence and lifelong inclusion of people with intellectual disabilities. Dan discusses his recent projects, the inspiring stories he has captured, and how his sons have joined him in using film to express their ideas.
For more on Dan’s films, visit: danhabibfilms.org
For more on his latest film Intelligent Lives, visit: intelligentlives.org or look for them on Facebook: facebook.com/intelligentlives
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HACKIE REITMAN, M.D. (HR): Hi, I’m Dr. Hackie Reitman and welcome to another episode of Exploring Different Brains. And today we have a return visit from Dan Habib, the award-winning photo-journalist, now filmmaker, now national speaker, who’s a great advocate for all the rights of those of us with disabilities, neurodiversity, and he’s got a great story. He’s done so much, he’s been on the President’s Counsel for people with intellectual disabilities. Dan, welcome back!
DAN HABIB (DH): Thank you so much!
HR: The names of your movies so far are Including Samuel, Who Cares About Kelsey, Mr. Connelly Has ALS, and a lot of the short films on disabilities, is that correct?
DH: Yeah, and Intelligent Lives is the new one that I’m making now. Yeah.
HR: Tell us about the sibling relationship between Samuel and his brother.
DH: Well it’s a big part of the film Including Samuel. you know, people who want to check it out, just a free trailer, you can go to includingsamuel.com and you’ll see a lot of interaction between Isaiah and Samuel. So when I made the movie, this was almost ten years ago, as I said, Samuel was between the ages of about four and seven during the three years I was filming. Isaiah was seven and ten. so now they are almost 18 and 21, so very different kids now. Like a lot of siblings there they have their own passions, and those passions don’t always overlap. Sometimes they do. Samuel is our huge professional sports fan, Red Sox and Patriots. We live here in New England so you can appreciate that the preferences. NASCAR you know, loves, also plays something called unified sports, which is started by the Special Olympics. It’s a wonderful program where kids with and without disabilities compete on a high school team against other high schools of kids with or without disabilities, so I encourage your viewers to check out unified sports. But I say all that because that’s kind of samples passions right and he has other passions as well. He loves bird watching and natural disasters and weather. Isaiah, he’s studying adventure education at Prescott College in Arizona, so he’s learning to be a teacher but out in the wilderness. He’s a huge rock climber, that’s his passion. So he’s incredibly physical, he’s incredibly physically fit, he’s incredibly physical in what he does, he’s a great educator he’s a naturalist. He loves you know organic farming, he’s interned at organic farms.
So they have their own interests, their own passions, but when they’re together there’s an emotional bond and a kind of a brotherly bond that’s incredibly strong. In fact one pretty cool thing that happened recently was Isaiah decided to do an independent study for school and just wound up about a week ago– he ended up coming home for a few weeks and documenting his relationship with Samuel through film and through interviews and through his own writing of narration. So he’s working on that film right now. So it’s kind of funny because he was working on that project and I was one of his mentor’s for that project. I have like five films in the works right now that I’m editing and then Sam was editing a film that he’s doing on his own perspective on our downtown which was recently rebuilt to make it much more accessible to a wheelchair and others. So we’re all working simultaneously on these films. My wife was like “I guess I should pick up a film too” but you know. So to answer your question they’re very close but like a lot of siblings they also have their own passions and they don’t get to spend as much time together as they would like.
HR: Well it’s one of my big regrets is that Rebecca was an only child you know. And she asked me to she’s little girl “why don’t you get me a brother or sister?” and I said you know “I asked God for so many favors and to just let you do good and I’ll never ask for another favor. I get you a brother or sister I got to ask for more favors.” but she goes “dad that’s not how God works. He’s got plenty of love for everybody.” but you know you segued into an interesting thing which is what Stephen Shore talks about and so many other of our neurodiversity leaders is harnessing the hyper interest which I made a chapter in my Aspertools book because our system tends not to do that. It’s kind of one size fits all and here you just described two very different individuals. They are harnessing and pursuing their hyper interests. Some would call them obsessions, I don’t.
I called them enthusiasm for stuff and I wish that our system allowed that to get going earlier, we have interns here at Different Brains and all of us here are a little bit neurodiverse. None of us I think would be neurotypical. I got expelled in the first grade and the tenth grade. But everybody tries everything until they find that thing that they really like. Like we have one intern here who shall remain nameless who’s sitting in the room here because he’ll beat me up. And he tried everything and he’s a truth teller. I said “how do you like this?” “I don’t like it.” “How do you like transcription?” “I don’t like it.” it turns out he likes and is very, very good at video editing, which is a talent, a skill, an art that pays really well and you know with movie making it’s all about the editor.
DH: Oh, yeah. Boy, I have two editors that I work with regularly and they’re both brilliant and they do far more than I could ever do. I direct, I produce, I write, I interview, I raise the money, I do everything but I don’t do that. It is a very specialized skill. But you know I think your point is well taken. I think I think this also translates into education. You know a lot of my film work is set in schools. And I think teachers work incredibly hard, I have so much respect for them. I mean we’re always asking them to do more and more and more but I think that one of the ways education is changing that helps the neurodiverse population and kids like my son and your child is to do something that’s called Universal Design for Learning, which means just like a building can be universally designed so that anybody can get into it, you know might have accommodations for people who are blind or deaf, have automatic doors people that use wheelchairs, education can be that way there could be a lot of access points. So for instance when my son is in his English class he has great English teachers. They might assign an assignment to him, or to the whole class. They might say, “Listen, you can listen to this, you can watch a video about it, you can do a skit, you can read about it, you can go into the community and learn about it that way.” So you’re giving kids five different ways. So all different learners can find their passion, their way to do it. And then when it comes time to show what you know, you can write a poem you know, perform a little dialogue with somebody, or skit, you can do a short film which Samuel often does as his homework assignments he makes a short video or a film. So I think it’s important to give kids in a school realm lots of different ways to explore those passions, because you know a kid might think they hate history until they watch that documentary that Ken Burns just made on Vietnam, and say “wow history is actually fascinating now that I can experience it this way.”
HR: That’s what society and the educational system needs to do clearly.
DH: And it is moving in that direction, it really is. I’m seeing that happen all around the country. Some of the film work I did was for a project called Swift, which is a big twenty five million dollar federally funded project to scale up inclusive education nationally, including kids with disabilities in all aspects of school. And I was the filmmaker for that project and all the film work I did is freely available to the public. They just go to Swiftschools.org. It’s right there. And what I found is that a lot of classrooms around the country are moving towards teaching in a way that you don’t have to retrofit education for kids who are different learners you don’t have to keep creating accommodations or modifications for every individual kid. You find a way to design the curriculum from the beginnings, that’s accessible to all different kinds of learners that’s really the key I think to education going forward.
HR: On the filmmaking front, if someone in our audience wants to make a film, what advice would you give them with what caveats would you give them, what would you say to somebody who says “you know what, I want to make a film.”
DH: Well, that’s a great question. I think the first thing you think about what your goal is for an end product, who your audience is and how high level you want it to be professionally. So for instance, I think that my son Isaiah who’s never you know taking a film course and doesn’t have a lot of money or great equipment. He took his little camera out and he did some short videos during one of his climbing adventures and made like a really fun, great five-to-seven-minute film that I think will be very entertaining and engaging people. It cost nothing it took no training. So I think I put it this way anybody these days who’s got a smartphone or a simple camera that has a video function and has access to a program like iMovie. IMovie is a very accessible one if you have a Mac or some other programs–can make a movie. Now how good is that movie going to be? That depends on how intuitive you are about it. How hard you work, how long you work on it how much you hone your skills on editing, and what an original story it is. I mean the story is, I always say content is King. If you have a great story to tell even if the making of it is a little rough it can still be a great film.
Now that said, if you’re somebody that says “I want my film to be on public television, or I want my film to be in theaters, or I want to be nationally released,” well then you got to think about this a little more broadly. You’ve got to bring out partners who can do the work or already have expertise and most people like to get paid. And so, you might need to raise some money if you don’t have the money. But you know Including Samuel I did for about a hundred thousand dollars, my recent films are more like a million dollars, so I have had to raise a lot of money to do this work. You know we’re about to launch a Kickstarter campaign for my new film Intelligent Lives, so we rely on grants, we rely on individual donations. I do speaking engagements around the country where I show films and that money goes back to my project. Because at UNH I don’t have a salary but I don’t have money really from the University to do this work. I have to raise it all myself, so I hope that gives you a sense. And then there’s everything in between. you know, there’s that real organic grassroots fun, “I can make a movie in two days,” and then there’s the “I’m going to spend three to four years making this documentary and I’ve got to surround myself with talented people, raise a lot of money and learn some skills.”
HR: Dan tell us about your newest project Intelligent Lives.
DH: Sure, so I finished Including Samuel back, as I said, in 2008. Started showing that all around the country and one of the questions that kept coming up on my screenings was “well what about kids whose disabilities are more hidden, whether it’s autism, whether it is a mental health issue?” That led to my second major project which was Who cares About Kelsey which I did between 2009, 2013, which examines primarily a young woman with ADHD and a lot of post-traumatic stress from some difficult things in her childhood and how she was on a path towards dropping out of school, probably getting addicted to drugs like many of her friends and family members, probably becoming a teen parent like many of her friends and family members probably getting incarcerated. I mean she was on a really rocky path as you people can see if they watch the film. The school used something called positive behavioral supports, which many of your audience may be familiar with it’s rather than punishing kids and keeps suspending them and expelling them and sending them to the principal’s office, you really try and understand the source of the behavior and you try and use as much as possible positive incentives rather than punitive measures to get a kid on the right path.
They also use some personally centered planning with her which is where the kid is at the center of the universe and you assemble a team around them, of their choice, to help them identify their dreams and hopes and goals and how to get there. So the film basically follows her for two years towards this path which ends up being very positive, where she graduates from high school and is now working and doing great. So that film, plus a lot of the mini films that I did as part of that project, many of which are on Suits with Autism are WhoCaresaboutKelsey.com and they’re all free to watch on that site. The shorter films. But I tell you that because this all was this progression and what happened was when I finished Who Cares about Kelsey, and I started showing that around the country often with Kelsey as a co-presenter, people would say “what about students with intellectual disability?” You know they’re the ones who were being segregated at the highest degrees. And when I started doing research I found that indeed only 17% of students with a label of intellectual disability are fully included in general education. The graduation rate for getting a regular diploma is at about forty percent, very low, and the employment rate’s only 15% for adults with intellectual disability having integrated meaningful employment, so those are awful, you know awful. And so this film Intelligent Lives, which is coming out in 2018, is an attempt to really first look at the way we perceive intelligence as a society and question, is it too narrow the way we perceive intelligence? And then look back a little bit at the whole way we got here was is IQ testing, has been a huge and very damaging part of our history which led to some very awful things you’re probably familiar with like mass institutionalization of people with disabilities in the first part of the 20th century. It led to the eugenics movement, which led to the forcible sterilization of about 60,000 people. It was used by Hitler, the whole eugenics movement, to justify murdering about a quarter of a million people with disabilities and during the Holocaust. So that’s our history and the question, and it feeds into why we are still so segregated as a society when it comes to people with intellectual disabilities. But thankfully the film is a very, I think, positive and forward-looking film because most of the film features three individuals who have a labeled emotional disability who are fully included and thriving in so many ways in high school, in college, and employment, and it tracks their journey in a very honest way. I mean there are some challenges in each of their stories, very significant challenges. and the documentary truly shows how our society is changing and how the whole paradigm of intelligence is shifting away from these false fixed measures of intelligence like the IQ score.
HR: Great stuff, great stuff.
DH: And I want to encourage your viewers to go to the website to see a preview. Intelligentlives.org has a 14 minute preview of the film and all the information and we just actually started a Facebook group for that.
HR: Why don’t you tell our audience now how they get ahold of you, how they look at all your projects? Let’s go through the whole gamut.
DH: Yeah, well the easiest way is to just go todanhabibfilms.org. That’s the URL. D-A-N-H-A-B-I-B-Films.org. That’s got a list of all my projects and the links to all my projects. I would say the best way to get in touch with me and to be up-to-date on what’s gonna be happening is go to the website of my current film intelligentlives.org and just–you can contact me there directly through email. you can also just sign up for our E-newsletter which comes out maybe every few weeks or a month, we send out some updates to people. We don’t sell the whole list or anything like that. And then we have Facebook groups. I have my own personal Facebook, but we also have, Facebook groups who are Intelligent Lives, for Including Samuel, and we have a Facebook page for my new film Mr. Connolly has ALS which we haven’t talked about but I can give a briefer on that if you want and I think you could be interested in this because this was a film that just came out recently actually. I’m actually tomorrow I’m going to the New Hampshire Film Festival to show it, we’ve got a whole bunch of film festivals coming up and we’re working towards broadcast of that film.
It’s a shorter film, it’s only half an hour long, but what happened was my son Samuel is a senior now at Concord High School. but a couple of years ago I saw him having a conversation with the principal Mr. Conway. But what was so powerful is that neither one was using words verbally. They were both using communication devices to speak to each other and I just thought “can this be happening anywhere the student is communicating with his principal and neither one can speak?” they’re both using communication devices. it was very powerful and so I decided as kind of a side project while I was working on the big intelligent lives project to do a film. And I spent about five days filming in the school, Gene’s home in the community. I gathered a lot of archival footage of Gene before he got ill from the local community TV station. And then what we did was we asked every student in the school, 1,500 kids, to think of one question they wanted to ask their principal who at this point had lost the ability to speak into walk and we honed 1,500 questions down to about fifty and we gave them to Gene in advance we could take some time to type up his answers because it’s hard for him to type. And then we brought them down to the stage of the auditorium with lots of lights and cameras and we filmed kind of like story core style if you’re familiar with the story core approach at NPR. We filmed them asking Gene these questions one after another. And that’s very, very intense and personal questions. I mean one student asked, “have you ever considered killing yourself?” and he answers very honestly. So the real spine of the film is this question-and-answer session between the kids but we intercut that with all the footage I shot in school and in the background. And what I think came together in the film was certainly it’s a film about a remarkable person or a remarkable leader who’s dealing with this devastating and fatal illness of Amyotrophic Lateral Sclerosis also known as Lou Gehrig’s disease. But it also shows how a person that was so committed to inclusive education at the high school, to including kids like my son Samuel who became a big part of the film as well, as has now become the one who is disabled and is now asking the school to include him. And it’s a very, very powerful and philosophical film in a way about coming to terms with a fatal illness, about what it means to be fully human, about how people are perceived once they lose their ability to speak, so I’m really proud of this film and it’s a very emotional film. And again, if people go to the Facebook page for Mr. Connolly Has ALS, they’ll be able to get a sense of test day on top of the broadcast and film screenings for that one as well and watch a trailer there. All my films have trailers they can watch them on any of the websites.
HR: Well Dan Habib, it was great having you back here at Exploring Different Brains again. We’d like you back as much as you can. You’re doing so much, and you’re so inspirational. Thank you so much for being with us here.
DH: Thanks for having me. I really enjoyed it.
Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.
Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).
Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).
This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.
In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.