Raising a Child with Cerebral Palsy, with Dan Habib | EDB 102
(19 mins) In this episode, Dr. Hackie Reitman speaks 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 raising his son Samuel, who has cerebral palsy, the strides society has made to recognize neurodiversity, and the importance of creating an inclusive atmosphere for children with disabilities.
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 welcome to another episode of Exploring Different Brains, today I’m very excited to be speaking with Dan Habib, an award-winning filmmaker, who has got a new project coming-out new documentary and a new thing and he’s going to tell you all about and welcome to the show Dan.
DAN HABIB (DH): Thank you, it’s a pleasure to be with you.
HR: I got to tell you I got such a thrill out of reading about you online with the different films you’ve made and what got you into it and everything and I can’t wait to share it with our Different Brains audience because you get it. You get you get this whole deal don’t you
DH: Well I think you can appreciate that I get it only because my son Samuel has taught me everything I know pretty much. I think many of us as parents you know our kids are the ones that really bring us into a world that we never quite expected to be in so that’s yeah if I get it it’s because of Samuel.
HR: Yeah ditto over here too. Introduce yourself to our audience, they haven’t met you before but a lot of them have seen you on all the national media you’ve been on but introduce yourself.
DH: Sure, so well I was a photojournalist actually for about 20 years before I got into filmmaking. So professionally filmmaking is relatively new for me I’ve been doing it about 10 years and it wasn’t a career path I had ever expected to take you know. My wife and I moved to New Hampshire almost 30 years ago to do I was doing newspaper work doing a lot of freelance documentary work and I would do stories on migrant workers, on welfare reform, I covered six New Hampshire presidential primaries you may know that New Hampshire is a big political state and I love my work as a photojournalist, but when we had our son Samuel which was almost 17 years ago now, actually almost 18 years ago life changed pretty rapidly because we determined that he had cerebral palsy about five or six months into his life and also an underlying health condition called mitochondrial disorder which caused a lot of underlying health fragility you know seizure disorders things like that.
So, as I’m sure a lot of your audience could appreciate, when you realize that your child has a disability many things change in your life and it took a few years, but there was one point in my life when Samuel actually got very sick. He got pneumonia from a tonsillectomy he had aspirated some blood and things didn’t go so well and it was a very difficult moment for us he was about three and a half and he was in critical condition for about two weeks and during that time his neurologist who was also the attending in the ICU said to me you know you’re a photojournalist he’s gotten to know us have you ever thought of telling the story of what it’s like to be a parent or a child with a disability. I said not really but he said you know it would be a powerful story for you to tell and I started bringing my camera to the hospital, just too honestly burn off some of the stress I was feeling, the anxiety you can appreciate we were feeling at that point. I started taking some pictures in the hospital didn’t really know where it would go but once a mile thankfully stabilized got out of the hospital got back to health I said you know maybe I should pursue this I started doing a documentary still essay on Samuel which which then I realize you know if I really want to reach young people video is the currency of young people these days and so I decided to to shift to video yeah. So anyway, that led me down the path of include creating the film including Samuel which took me about three years to make while I was still director photography at the newspaper. Once that came out in 2008 about ten years ago, I decided I wanted to devote myself full-time to filmmaking and from that point on I’ve just been doing documentary film work here based at the University of New Hampshire Institute on Disability and I’ve been doing that full-time for the last ten years.
HR: What a great story. Now many in our audience are ignorant towards Cerebral Palsy because it doesn’t get a lot of the press that some of the other highlighted neurodiversities. So, why don’t you tell us about cerebral palsy?
DH: Right, well you know the way I describe it to your audience would be the way I describe it to anybody that asks about Sam’s disability, which is that he has some trouble connecting his brain to his muscles. You know his brain just doesn’t direct his muscles very efficiently and that can happen for a lot of different reasons. I think there’s a misconception that cerebral palsy is inherently a birth injury but in actuality the majority of cases it’s not a birth injury and people think it’s like an oxygen deprivation at birth but in many many cases it’s a genetic disorder, it’s a mitochondrial disorder, a metabolic disorder which all means that at the cellular level something that’s going wrong there’s something that’s not quite clicking and so in those situations that can cause a brain injury in utero, which is what happened Samuel and it can have a lot of complications. In Samuel’s case it did create it creates such difficulty with him navigating his muscular functions that he used the wheelchair he has trouble speaking and he uses a communication device, but you know I’m sure we’ll have a chance to talk more about this. I want your viewers to know Sam’s also almost always on the honor, roll he’s a high school senior, he’s looking forward to going to college, he’s going to the homecoming dance Saturday night, he’s got a date he’s playing three sports he’s, he does a lot of public presenting, he’s a filmmaker so there’s so many I don’t want to you know shoe box a shoehorn Samuel into this into this you know mindset he’s just a disability he’s obviously like you appreciate that so many more things going on.
HR: Well that’s well said, and you know back in the old days when I was becoming an orthopedic surgeon, one of the best years I spent was a whole year of what used to be called the Shriners Hospital for crippled children, in Springfield, Massachusetts. For that whole year I lived with the kids, I stayed in the hospital, became part of them and we just had a great experience and what I started to see then, that I think much more so now is how everything overlaps. All the systems overlap and everything and the basic science now is moving more and more toward as you say the cellular mitochondrial level and in addition to that, I think when the the final history is written that all stuff is going to evolve from mitochondrial level from the autoimmune system what we call infections. Which are probably really immune phenomenon and I think great strides are being made now. One of the overlaps in cerebral palsy is the rubella and other you know other diseases like that. How has, from your point of view how is he approach to cerebral palsy changed in the past 17 years?
DH: Well you know that’s interesting. I honestly haven’t seen a tremendous number of changes you know for better or for worse. I think that what is probably changing the fastest, as you can appreciate, is our understanding of the genetic makeup of human beings and the fact that they’re diagnosing things that it couldn’t diagnose before. So you know, 20 or 30 years ago Samuel they probably would have just thought he must have had some kind of birth injury, they would not have been able to do the diagnostic work to know that he has a mitochondrial disorder. The benefit to knowing that his doctor has been able to target his medicine and not just his like prescription meds but even over-the-counter vitamins he takes. All these vitamins and supplements that that turbo towards the mitochondrial process and our neurologist has prescribed those because he’s really understood you know the nuances of the mitochondrial process I think you know I mean honestly I think that we of course focus a lot on I’m keeping Samuel healthy and getting him the right medicine and treatment in therapies but I think as much or more of our life is focused on disability rights inclusive education and just opportunities for him to be successful and completely integrated into all aspects of our society without having to minimize any aspect of his disability but totally accepting his disability for where he is and and working more on society you know, working to fix society much more than we’re fixing Samuel.
HR: And then right now we’re in the middle of National Disability Employment Month that’s right and employment is as Temple Grandin said that’s where the rubber meets the road you know.
DH: Right exactly, and we’re very focused on that for Samuel. I mean he you know I’ve been fortunate to do a lot of film work around the country, some of which looks at transition issues for kids transitioning from high school to college and career and understand what some of the best practices are what some of the promising approaches are, and one of the things they say is if a kid has some paid work experience in high school a kid with a disability they’re much more likely to achieve integrated employment as an adult. If they have some household chores they’re much more likely to achieve that if they have internships and mentorships so you can believe that we’re doing all those things including household chores for Samuel.
HR: Excellent, I agree a hundred percent. Tell us what it was like you had the honor and privilege and did such good work when President Obama appointed you to the President’s Committee for people with disabilities. Tell us what that was like?
DH: Sure, and I’m still on that committee actually. Although we have not met under the new administration, we’ll see how that goes you know you never know but we it’s called the President’s Committee for people with intellectual disabilities. Specifically it’s been a fascinating and I think a very important project you know we we meet several times a year in Washington it’s not a it’s not a job, it’s really more of a volunteer you know role but it can be quite demanding at times because we’re charged with every year writing a report to the president recommending what needs to happen in the world of disability to keep things moving forward to keep creating opportunities in education and employment and community life for people of all abilities and disabilities. So we did, for instance, one report that was just on technology access and how can we continue to advance technological access both spent both kind of specialized technology for people just with disabilities but also access to mainstream technology whether it’s iPhones or computers or transportation, so that was one report we did.
Another report looking at pathways to inclusive lives through education through employment through you know having self-determination when it comes to guardianship issues things like that. So so it’s been powerful you know I can’t honestly I’ve never met the president in that capacity he wasn’t spending time with us, I don’t know that I’ll meet President Trump in that capacity but what we did see was the reports that were issued actually had some policy impact. We saw things happening at the federal level that came out of these reports and in fact the Able Act I don’t know if you are familiar with that. It’s a well-known policy that came into and into reality the last couple years that allows people with disabilities to save up to a hundred thousand dollars without affecting their benefits so it’s a really important policy change that has occurred because in the past if you earned even five ten thousand dollars you could lose your Social Security money you know and so there was no incentive to work and no opportunities. That Able Act grew out of a previous report for the Presidential Committee.
HR: Wow thank you for all the hard work you doing.
DH: Oh I love it,
HR: Who are some of the other champions that you work alongside with in general? Who are some of your heroes in the whole movement?
DH: I’ve got some heroes for sure. I mean one of my most current heroes and current friends is a woman named Judy Heumann. She is a longtime disability rights advocate. She was in Berkeley during the really intense times when they were trying to get section 504 passed which is really important legislation. She helped work on the Americans with Disabilities Act, she’s been involved in almost every major piece of legislation she ran the education policy under under President Clinton. One of the cool things is that she and I become friendly and I’ve met you know talked to her at conferences and so when it came time for Samuel to do his final project for sophomore year and it had to be a project about a civil rights movement she agreed to Skype with him for an hour and do an interview so he did a fabulous film that if your viewers are interested just go to youtube and just google Samuel Habib’s Judith heumann and it’ll pop up it’s free and it’s like a short history of the disability rights her on skype and it’s all video taped. He created it, he put the music in, he put the videos in so so she’s really important.
I would also say Bob Williams is a very long time serving US federal government official in a lot of different departments and I got a chance to interview him about ten years ago maybe even longer when I was starting Including Samuel and when Sam was very young and I said this is the parent of a child with a disability, what’s the best advice you can give me and Bob is a man who can’t speak uses a communication device but was basically Clinton’s right hand and person for disability policy and he said just give him choices at every step of the way you know. Create self-determination foster self-determination all the time and that was very powerful advice and my wife and I have taken that to heart. So those are a couple people I mean there’s famous people like Ed Roberts obviously Temple Grandin you know it’s fantastic you know and then there are a lot of young people who are up and coming in the movement who do incredible work I could throw a lots of names but there’s a whole new generation of disability rights leaders that I’m really excited about.
HR: What is a bit of advice would you have someone in our audience has a child with cerebral palsy what advice would you give them?
DH: Well there’s so many directions to go with that. I mean all I could say is that for us the you know a couple of things have really guided my wife and I and my family in this journey of less than eighteen years. One is to come up with a vision for your child that’s a very high vision high expectations for what you think of what you know they can achieve it doesn’t mean it’s not gonna be a bumpy road, doesn’t mean they’ll achieve every aspect of that vision but for us the vision was that Samuel would feel like he belonged, who’d feel like he belongs in our family, in our neighborhood, in our community, and certainly in our open public school. In fact I couldn’t imagine him feeling like he belonged unless he felt like he belonged in our own local public school. So that’s why we fought and advocated so hard for inclusive education reform that our district is generally quite inclusive and Sam was always in regular classes and I’ve never for one second of my life regretted that we have pushed hard and that he has been in general education classes even though at times it’s challenging you know academically like it is for many kids. At times logistically, there’s a lot of things we need to figure out. It has connected him to the community, it has created an amazing number of friendships, it’s exposed him to a really high level of educational discourse so I think that’s critical I think you know obviously it all starts with health I mean you have to focus on health.
You have to have doctors and specialists that you trust and once you find that physical therapist or occupational therapist or speech therapist that you believe in and that you really feel is going to do great work on behalf of your child do not let go of them, hold on to grab their ankles and don’t let them go anywhere you know and I think that’s really important building a network around and then and then I think you know I really do think also that we need to learn that we couldn’t spend our whole life trying to fix Samuel you know that is not what it’s about, we want to keep him healthy but we have come fully to accept his disability and he accepts his disability. In fact he embraces his disability at this point I’ve asked him many times since he was 7 or 8 years old Sam oh if you could just get rid of your cerebral palsy would you and he always says no. It is now a part of his identity just like if you ask that same thing to a black person or a person who might be or have a different sexual orientation they would say this is just who I am I can’t imagine myself not being this way even though it’s hard sometimes to be in a minority group that can be discriminated against, like the ones I mentioned it’s also a part of your identity and and for Samuel he’s very proud of his identity as a person with a disability he wishes he didn’t have all these doctors’ appointments and blood draws he would get rid of those in a second but he but he’s accepted who he is and I think that’s something that the parents can model from a very early age to accept the child for who they are and where they are.
HR: Since you’ve become involved how has the neurodiversity movement changed?
DH: Well you know I’ll be honest with you it’s not an area of my expertise, but what I would say from my own experience is I’m pretty well connected to groups like ASAN (Autistic Self Advocacy Network), Autism Society of America and you know again it’s not all about autism, but I think a lot of leadership within the neurodiversity movement comes from the autistic people and autistic groups and I think I’ve seen similar to what I’ve seen in Samuels orbit, a push to just accept people for who they are and that people of all different you know areas of neurodiversity all types of ways of thinking all types of ways of experiencing the world all types of ways of processing the world have a place in our society, have a place in the workplace, have a place in an education. We hate still have a tremendous amount of work to do tremendous amount of work. I mean the rates of employment are still way too low but I’ve seen increasingly more and more articles, movies you know that show that this is part of our natural diversity and I think that’s what we really need to see this as a disability whether it’s neurological disability, physical disability, other disabilities, or mental health disabilities are part of our diversity and should be embraced as such and every effort should not be made just focus on fixing people. It should be made on changing the world to make it a more inclusive and accepting place for the diversity that of disability.
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: Danhabibfilms.org that’s got a list of all my projects and the links to all my projects and and I would say the best way to get in touch with me now 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 from email you can also sign up for the e-newsletter which comes out you know maybe every few weeks or a month we send out some updates to people we don’t sell the list or anything like that.
HR: Well Dan Habib thank you so much for being here for another episode of Exploring Different Brains. We hope to have you back very soon because you are just full of great intellect, great messaging, and great work. Thank you so much for all you’re doing.
DH: Thank you so much. I really enjoyed the conversation.
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.