Producer: All right, welcome back to Full Prefrontal where we are exposing the mysteries of executive function. I am here as always with our host Sucheta Kamath. Good morning, my friend, good to be with you as always, so I guess I will lead it off with this: Welcome to Holland.

Sucheta Kamath: Yes, thank you, and it’s great to be with you, Todd.

So, in 1987, Emily Perl Kingsley wrote a wonderful article which I often recommend to parents. She titled it Welcome to Holland. In that, she writes, and I’m going to quote here, “When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans, and the Colosseum, the Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives, you pack your bags and off you go. Several hours later, the plane lands, the stewardess come in and says, ‘Welcome to Holland!’ and ‘Holland?’ you say, ‘What do you mean Holland? I signed up for Italy. I’m supposed to be in Italy!’ All my life, I have dreamed of going to Italy, but there has been a change in the flight plan. They have landed in Holland and there, you must stay.” So, many of us has landed in Holland in one or more realms of life. Are we happy there? “Have we found the sites to see?” is the real question. What do we make of it?

Using executive function is how you solve problems of life. That, too, in a meaningful way, so it helps us stay on a path to purposeful life. Visa skills are put to test when we experience a roadblock or face adversities. In general, executive function kick in when life throws unexpected wrench. Hence, at the heart of finding meaning in these conditions of challenge is resiliency which means bringing into focus the adaptive shift and flexible adjustment needed to do what it takes. Finally, success comes to those who stay hopeful while exercising agency. How exactly one goes about colloquially opening another door when the first would close us? You cannot understand executive function without observing its impact beyond the individual. Having been in this profession, one challenge that keeps surfacing again and again is the invisible nature of executive function disability and societal preconceived notions about how able people do what they do. Being quick, effortless, timely, and without struggle is how we expect able people to be, and today, I want to take the opportunity to demystify this myth.

Emily Perl Kingsley ended her article by saying, I quote, “But, if you spend your life morning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely thing about Holland,” and at what brings me to our wonderful guest, Dan Habib.

Dan is a filmmaker of a University of New Hampshire Institute on disability. He is the creator of award-winning documentary films including Samuel, Who Cares about Kelsey?, Mr. Connolly Has ALS, and many other films on disability-related topics. He has recently released his new documentary, Intelligent Live which examines our societies narrow perception of intelligence. The Intelligent Lives project has also contained for short films focusing on effective practices and transition for youth and disabilities from high school to higher education and employment. Dan has received the Champion of Human and Civil Rights Award from the National Education Association, and the Justice for All Grassroots Award from the American Association of People with the Disabilities. In 2014, Habib was appointed by Pres. Obama to the Pres.’s committee for people with intellectual disabilities.

So, we have been with us. So, I’m so excited to have him.

Dan Habib: Thank you so much for having me today. I’m looking forward to speak with you.

Sucheta: So, there are several reasons why you are on this show and on the topic of executive function, as I mentioned in my introduction, that truly, I would like for you to play many roles or put on many hats. I have used here as a parent, a hero and more as an inspiration to all. Life produces best melodies when real challenges invoke passion to flip the convention on its head, and that is what you did.

Before we get into that, can you tell us a little bit about your own childhood? Did you witness disability as you were growing up? What was the worldview that you carried about abilities, inabilities, and disabilities?

Dan: Sure. Well, yes, that goes back a little while now. [0:05:04] that time, but I actually remember it quite clearly because when I was quite young, I grew up in New Jersey in the United States and I remember being in preschool, when I was about four or five years old and there was actually a boy named Richard who had a headband around his head all the time, and it kind of set him apart because Richard was like, the kid with the headband – he was different from everybody else. I remember asking my mother one day, “Why does Richard where this headband, mom?” and she said, “Well, Richard has had some ear surgeries that to protect his ears from dust and things getting into them,” and that satisfied it, but to me, just the fact that Richard was seen as having this huge difference because of something so really small and simple really stuck with me, and throughout my elementary school and middle and high school, and right into college, disability was really not a part of my world and that’s even given that I went to university, University of Michigan in Ann Arbor or that was very active in social justice movements and civil rights, but never did I hear disability rights becoming part of the equation. It was never part of the discussion.

So, it really wasn’t until I started work as a photojournalist and I just had to take on one of my very first documentary stories for the newspaper was on kids with disabilities being “mainstream” into regular classes that this whole idea of disability and inclusion really came into my radar.

Sucheta: So, what did you see when this idea about mainstreaming which seems to be a desperate measure for everybody wants to see children mainstreamed which is kind of their psychological assurance that everything is fine now, and what did you notice?

Dan: Right. Well, to be honest, I would say that not everyone wants to see kids with disabilities mainstream, even to this day. I think there’s still a lot of resistance to kids with a wide variety of disabilities be included, but during that time, I saw that the kids, including this one boy I was really kind of featuring named Todd was extremely happy and engaged being in a regular classroom, and Todd was kind of like my own son Sam who I’m sure we will talk about, has cerebral palsy, was nonverbal, but was obviously very engaged in the class and in the content, and it’s around that time that I started becoming aware of this notion called “The least dangerous assumption,” and the idea behind that is that the least dangerous assumption you can make about someone is that they are competent, particularly someone with a disability because it’s very easy to discount or write off people that don’t communicate in a traditional or typical way, or walk-in typical way or here in a typical way, or speak in a typical way. Unfortunately, our societies stigma around disability is not very deep and people with those differences often get written off or excluded, and so I thought I’d be engaged but I also saw the friendships he was making and what he was bringing to the classroom in terms of this the engagement that other students have with him, and as I have come to understand the situation more deeply, I’ve come to see the incredible value at students with disabilities in the regular classroom have, not just for themselves, but for their peers, and I’m sure we can talk more about that.

Sucheta: Yeah, I think you make this wonderful point about stigma and I immediately associate that with fear, whether they are valid or not, they are irrational fears about either noticing disability and associating with disability, or fearing disability having an impact, particularly adverse impact on itself, and this is the protective mechanism that everybody wants to stay away from it, and also, I think less visible disabilities which is where I operate a lot now, that I specialize with executive function, which is the incompetence in people which is then associated with you not looking disabled, but you behaving incompetently, that means you must not care about life or you are not worthy to be considered equal, and so that kind of really hurts my feelings, but as well as I see that it takes a lot of effort to change people’s mind, so what did you know it is after your photojournalism experience by talking about Todd and bringing back to life, did you notice that people will willing to change their minds or open their hearts?

Dan: Yeah, I think it’s a great point you make, and I think it’s often the adults that have the hardest time with it. I find in general, kids have no issue for the most part. They are very adaptable, especially if they have been from an early age exposed to the full range of diversity of disability, and it’s just like with other realities of life, right? If you have a community that’s very diverse ethnically, then people will be much more comfortable with a very diverse ethnic environment, or social economic environment. The same agenda, same with sexual orientation. Kids who are exposed disability very early on, it’s nothing to them. It’s part of – I wouldn’t say it’s nothing, but it’s a very natural part of their surroundings, but it’s often the adults, whether it’s the teachers that are fearing, I won’t be able to reach this kid or I won’t know how to teach this kid, I don’t have training in special education, I can’t do this, and in fact, we have found that some of the teachers that have absolutely no training in special education have been my son’s and other kids with disabilities, their best teachers because they just – the ones that are just committed to finding a way to reach this child and learning more about how this child learns and what they mean, what kind of support they need to be successful and how their mind works. It’s not about necessarily special-education, it’s just about education and reaching those kids, and the same with other parents. I think sometimes, people are just fearful of the unknown, and particularly, as you said, students with more hidden disabilities, and I would even specifically say students with emotional and behavioral disabilities, that is probably the population that is the most feared, I would say, by teachers and students because of a lot of misconceptions. You think of an emotional/behavioral disability and you think of aggression or challenging behaviors, or screaming, yelling. It’s more often anxiety or depression, or feelings that are more self-destructive than they are destructive towards anyone else, and again, those students deserve the same rights as a student with a physical disability be alongside their peers in the regular classroom with the support they need to be successful, and I found time and time again, my sons teachers and other teachers I’ve met, once they have the experience of having a diverse classroom of kids with disabilities, with the right support, right question mark with the right supports from physical therapists, occupational therapist, speech therapist, paraprofessionals, whoever it might be, and they can be successful, it’s a tremendous rewarding moment in their teaching career.

Sucheta: absolutely. I grew up in India before I came to US, and one of the things that – benefits I feel I have gained is it was the unveiling of disabilities. There was no specialized institutionalizing of people. They were all in the same community. You will see a person – and the handicap accessibility issues are still not sorted out in India so people not being able to go places, but then you have five people are helping a person go up and down the stairs because people are actually coming out of their apartments and helping people get into rickshaws and things like that, and when I was growing up, my distant cousin actually fell and hit her head, and she developed speech impairment, and of course, she was labeled as being dumb, and all her life, and she was excluded from – he was considered unwell, honestly, and socially emotionally dangerous because she would laugh without a reason, she would cry without a reason, and now that I know it’s called emotional ability, and in fact, my parents were wonderfully compassionate people, and they kind of made us, forced us to interact and forced us to be with them, and that actually helped so much for me you have no fear, just basically where I see a lot of people being stopped, and the second point I think you made which is very powerful to me, that the children have no problems as much as adults do, and this reminds me of a psychological experiment they did with two identical circles side-by-side, and one is surrounded by smaller circles and one is surrounded by a larger circles, and when children are asked in the center circles, the middle circles are the same or different, it’s adults who cannot distinguish, but the children, adults are influenced by the outer circles and they based on the outer circle, they are small, they call the one in the center surrounded by smaller circles to be large, and the children are unable to distinguish the two because they don’t have – they have not developed the contextual referencing, and I love that experiment; I always start with that when I talk about demystifying the myth that bind you to preconceived ideas that operate or create invisible forces which make you inflexible.

Dan: Yeah, and I think it’s important, your bringing an interesting study, and it’s important to think about and know about the research to, and there is a tremendous research 30 years in the United States that showed that students with disabilities who are included in regular education classes end up having better outcomes, whether it’s post-secondary outcomes for college or employment, relationships, behavior, communication – across the board, students were included in regular education have better outcomes. Of course, we want that, right? I mean, on every level that makes sense to have better outcomes for students with disabilities, but they are also finding more and more than students without his abilities actually can benefit academically by having more diverse classrooms by disability. There was a great study by a researcher of Vanderbilt University, Eric Carter took groups of students that were working together, prepare for tests and studying material together, and he would take one group – and that was a very diverse groups with students with and without disabilities, he compared that against the group that was very monolithic; was the students without disabilities, and they did this again and again, and again with multiple groups, and in each case, students without disabilities are working alongside their peers with disabilities scored better on the tests that they were preparing for, and so he was very fascinated by this, like why were students in this diverse group of it with and without disabilities, why were they scoring higher on tests than students without disabilities? He found that the students told him, “We were more engaged in the curriculum. We wanted to work alongside our peers. We ended up explaining and thinking about it in multiple ways it so that we could all understand and we were reteaching the material,” and these students scored an average of 15 points higher in their tests. So, I think it’s important to know that the academic risks are negligible or nonexistent students without disabilities and also the academic benefits are actually growing, and then you think about the social emotional benefits because school is just not about academics, right? I mean, that’s important, but when we think about who we are as human beings right now in our lives, not just what we do for work, but the movies we watch, the books we read, difference we spend time with, the hobbies we take on, much of that has to do with the academic experience of school versus the social and emotional experience of school? And I ask this of audiences a lot when I do public speaking, in every audience, 90% to 95% say the social and emotional experience of school had a bigger impact than we are today as a person, and if you go open a school that is very diverse in every way, your social emotional growth is exponentially greater, and so that is yet another reason, I think why advocating for inclusive classrooms and schools is so important.

Sucheta: Yeah, and you bring up a very important point which has become a wave or at the least, there is so much awareness of the SPL curriculum, the Social Emotional Learning Curriculum and it’s interesting to me that now, we have to go outside of thinking that you have to now find more time or extra time the attention to child’s wholesome development, and it’s a shame to me, why are you thinking that as an outside thing? It should be, I mean, all the research and learning, in fact one of the experts I had, his name is William clam and he talks – he’s a memory expert and learning expert, and he says that children tend to learn more when there is meaning, and that passion that teacher exhibits can come through and can really motivate the children, but I think once the motivated children, engage children tend to retain what they are learning, and so you make such good point about this, that the point of impact is not just shallow, or its radius is wide. Now, let’s talk about family all. I mean, tell us a little bit about your personal journey, how all that came to head when you had already done some work with children with disabilities and you were not expecting to experience what it will take to raise a child, right?

Dan: Right. Right, I mean, the story I did that I mentioned earlier on mainstreaming was done back in 1991, and didn’t start having children with my wife until 1996. My first son Isaiah was a very typical child. Actually, always somewhat ahead of the curve. He walked and said his first words, took his first step and said his first words at about 10 months old, so if you know child development, that’s quite young. To this day, he’s a very good athlete and rock climber, and I believe he has his own significant executive functioning challenges, but now, [0:17:31] diagnosis, just boy – boyhood is pretty much what it came down to, but is doing wonderful. He’s graduating in college in May.

Sucheta: Congratulations.

Dan: Thank you. Yeah, he’s worked very hard for that, and then we had our second child, Samuel in 1999 and it was just after a few months that we realized it was not developing in a typical way. He gets way behind in terms of trying to set up and roll over and speak, and long, long story that I condense here, but by the time he was about one year old, a lot of testing and assessments, we realized he had cerebral palsy, and that – some of your listeners may or may not know really what all that means is that bears commiseration issues between your brain and your muscles and it can be caused by many, many different things. It can be caused by birth injury, it can be caused by mitochondrial disorders which is where Samuel’s diagnosis lies, and so we quickly were thrust into this world of wow, oh my gosh, a lot of uncertainty, a lot of fear, a lot of grief, frankly, of losing the child “that we thought we would have” in terms of two kids who are developing a typical weight, and suddenly have to really adjust your whole life. As you said from the beginning, you are in Holland instead of Italy, and so my wife thankfully did a year-long kind of intensive leadership series on disability rights advocacy and really understanding that people with disabilities can have these incredibly full and robust, and amazing lives, and can be in regular schools and have great jobs and relationships, and marriage, and their own homes, and very early on, we realize that was possible. I did the same leadership series right after her and she said, “Dan, you have to do this. We have to be on the same page.” So, we did it. It was actually through my current employer [0:19:09] disability of a University of New Hampshire, and now, sample is doing a series, by the way, at age 19.

Sucheta: Really?

Dan: Yeah.

Sucheta: Oh, my goodness, that’s fantastic!

Dan: So, there’s no way to summarize, obviously, 19 years of life experience briefly I will say that from a very early age, we realized that we wanted Samuel more than anything to feel like you belong, that he belongs in our home, in our community, in our extended family, and our city of Concord, New Hampshire where we live, and we couldn’t imagine him having that sense of belonging until he felt like he belonged in his own school right around the corner where all his friends went.

So, thankfully, we live in a community that is quite inclusive of people with disabilities, but we have continued to advocate strongly for full inclusion, and it wasn’t until he was about three or four years old that we thought, well, maybe I’ll do a film that shows this journey of inclusion, and I ended up spending about three years will make our life, Samuel’s life and the lives of four other families navigating life with a disability through education –

Sucheta: Thank you so much for doing that. That’s so incredibly moving.

Dan: Oh, no. Thank you.

Sucheta: My sons and I watched over the weekend – I had watched it earlier, it was so moving, thank you.

Dan: Oh, thanks, I appreciate that. So, that ended up becoming a film that you know including Samuel which came out about 10 years ago, then and that launched him into this whole new filmmaking career.

Sucheta: So, did you know anything about cerebral palsy before you had found?

Dan: No, as much as anybody on the street. Yeah, I just knew that it was a motor issue that ended up resulting in a lot of people having trouble walking, using wheelchairs, speaking, but I knew very, very little about cerebral palsy.

Sucheta: And, as a parent, when you were trying to help him become more skilled, become better adjusted and become more ready to handle the progression of life, what did you notice? What was so hard having cerebral palsy and achieve that?

Dan: Well, I mean, in the physical demands on Samuel, on the family are significant. He uses a wheelchair, uses a power wheelchair now. Basically, the easiest way to say it is that he does everything that all of us do, he just needs more help getting it done, and in terms of the physical support, it’s intense. Cerebral palsy is not the same for everybody, obviously. There are some people that are very mildly affected by it, some people are more significantly affected. Sam has a fair amount of ability to speak. A lot of people – many people with cerebral palsy can speak at all. Some speak very easily – it’s a huge range, so I can only speak in our own case. Our own case, it’s just, the biggest challenges that navigating the world of insurance coverage, and a verbal medical equipment, and speech therapy, and physical therapy, and occupational therapy, and he probably has eight or nine different medical specialists, and I mean, you talk to any family member of somebody with a significant disability, and we know, like we understand each other. We understand that we spent literally hours, sometimes each day – certainly many hours each week navigating things and logistisizing around things that nobody else has to worry about, no other parent has to worry about in addition to all the things that you want to be thinking about, like participation in school, and sports, and friendship, but even simple things like Samuel now wants to go on a date and for a lot of kids, at means they go out in the car and they go out on a day, and it still has its own risks, of course, but for Samuel, it’s the whole [0:22:17] question of life, where can they go that is accessible? How is he going to get there? Who is going to bring him there? How can he be with somebody but not have somebody right next to him the whole time? Having that level of independence. There’s just so many more things to think about and worry about.

So, I can go on and on, but I will close that part with one really important comment which is that I have asked Sam all many times since he was seven or eight years old, if you could get rid of your cerebral palsy, would you? And he has said no since he was very young, and it’s because he now sees it that is a part of this identity and he is proud of that identity, he is proud of being a person with the disability, proud of being a person with cerebral palsy.

Sucheta: Oh, that’s incredible.

Dan: He would get rid of all the medical interventions in a second if he could, all the blood draws and all the appointments we had to go through, but his own identity as a person with cerebral palsy is as inextricably linked to him as it would be to a black person who if you said, “Don’t you want to be white?” or a gay person and you said, “Don’t you want to be straight?” I mean, it’s a part of their identity and it’s the part that they should be proud of.

Sucheta: And that, to me, that go back to the article I was talking about, he has arrived in Holland and he is loving it, loving the experience of it.

Dan: [0:23:21] he knows.

Sucheta: He is okay with it!

Dan: Exactly! I mean, someday, he may never get to Italy, you will get to lots of other places, but if Italy is the place where you are not disabled, that is not a place you would ever visit.

Sucheta: So, can you share with us some of the most interesting or surprising interactions you have had with people when dealing with you all as a family with a person with disability? I’m sure those are not most savory – not all of them are most savory one, but do you have something that strikes you as you wish people have a better understanding or somewhere [0:23:54] surprised by people.

Dan: Yeah. Well, I mean, [0:23:56] there are many, many positive things that have been and have happened because of samples of disability. Sometimes, it’s just simple acts of kindness, you know, people going out of their way to hold the door open or seeing Samuel waiting to meet his favorite NASCAR race car driver in heat and saying, “You know, why don’t you go to front of the line? Looks like this is hard for you.” Whatever it might be, just simple things are nice, that are kindness, we appreciate that, and that happens again and again. There are suddenly also some negative things. I think the biggest thing that bothers our whole family and certainly bothers Samuel a lot is when people talk to him like he’s a five year old, and that is a very common experience. If you ask anybody who uses a wheelchair, any adult, just the people talk to you like you are a little kid, I bet you will get 99 out of 100 will say yes, and it shows what a stigma around disability exists that people think just because you use a wheelchair, just because you speak differently or have a lamp, or don’t see in a typical way – you are blind or hearing impaired, I guarantee you, people will talk to you like you are a little kid or they will speak loudly or they will speak slowly, and to me, that is the opposite of presuming competence, right? I mean, when I was talking about earlier, the least dangerous assumption, meaning you assume someone is competent, the idea that you should presume competence, you meet somebody in the street who has a difference and you just speak to them like you would anybody else, and then you might learn that they may need certain accommodations in the way they communicate, and then you figure that out, but you start from a place of presuming competence. So, I’d say that is the most common issue that we deal with and the most troubling.

Sucheta: So, how best have you redirected people?

Dan: Well, depends on the situation. My wife and I joke, we don’t feel like being disability rights advocates every second of our lives. Sometimes, it depends on the situation. Sometimes, you just blow it off and you don’t make a big deal with. Other times, I will say to someone, “Sample just graduated from high school and he’s in college now,” just kind of wait and let them understand what they were doing – they were speaking to him like a little kid, or he actually has – he uses a communication device for a lot of this language – he does have a button on it that says, “You know I’m 19 years old, right? Why are you talking to me like a five year old?”

Sucheta: Oh, that’s great!

Dan: He doesn’t like to use it very much because he’s very non-confrontational, but it’s there when he needs it. So, there are variety of approaches. I think the most valuable thing is to just weekly let people know, my son is in college. That gives them a sense of –

Sucheta: Please talk –

Dan: Yeah, don’t talk to him that way.

Sucheta: That’s actually – you just described – covered the whole issue about danger of low expectation, low expectations, and one of the things that I find, and simply, like exposure is the key, I think people suffer from not that they don’t have the exposure, but they have not made that opportunity available to themselves, they haven’t engaged, they haven’t jumped in to find out more about the other person, and that to me is the highest form of close-mindedness that I see.

Dan: Yeah. There is a great expression, one of my early mentors is and was a man named Norman Kunz. He is an incredible disability rights advocate based in the Vancouver, Canada area, and he spoke to that leadership group that I did when I was young. He was the one that said first to me, “If you gave me a pill to cure my cerebral palsy, I wouldn’t take it because it’s who I am, it’s a part of who I am,” so that is, again, how Samuel feels now, but he has a great expression he calls “Seek the story in the stranger,” and the idea is that you see someone that is different than how you are used to interact with someone or somebody that doesn’t – you don’t quite understand where they are coming from, seek out their story, talk to them, try to understand where they are coming from, what is it? Everybody has a story, everyone has a story and you just, you need to be active in seeking that out and showing empathy and understanding, and more than anything, listening – your ability to listen.

Sucheta: I just love that, seek the story in the stranger, beautiful.

Dan: Isn’t it? Yeah.

Sucheta: The thought that comes to mind, Dan, this human beings are wired for storytelling and we make connections through others, through stories of each other and I think if we just allow that to happen, I think there is a wonderful way kind of find just a human connection, and I don’t see there needs to be any special, like workshopping and seminaring, how do I connect to people with disabilities? How do I connect with people who look different than me? I think get to know them, spend some time with them, don’t be afraid of them.

Dan: But you need the opportunity to do that, and that’s where I think society’s system of segregation are so troubling because you don’t understand what it’s like to live with a disability, just as you don’t understand what it’s like to be of a different ethnicity or nationality, or racial group that you are, or a different sexual orientation then you are unless you have friends who have that diversity, or you’re in school alongside people with that diversity, or in the workplace or in community, and so that’s why I am so [0:28:34] in favor of and working towards inclusive education, because I don’t think you can truly understand that range of experience unless you are living it or living – at least living next to people or even alongside people who experience it. [0:28:49] say it’s why I love being a storyteller as you just said because short of living it, at least I can bring people into the lives of all these interesting people with disabilities in their families through film, but I think, I’m hopeful that no matter how our society continues to evolve and change technologically and socially, politically, as you said, I think storytelling is going to remain, and I don’t think that can be, for the most part, done by robots were done by automation. I think that real human beings need to continue to tell stories and I just love the medium of film for that kind of immersive experience of bringing people into other people’s lives.

Sucheta: at being a speech and language pathologist, I work with a range of communication disorders, and so ever since my kids were probably six or eight, they have come to my clinic and I have done a lot of outings with people with autism or brain injury, or stuttering, or voice disorders, and one of the biggest suffering that came to a lot of these children was being ostracized for being different: different sounding, different looking, or just not being – looking on, let’s say, and one of the things I would encourage my children to say, like just tell him, “Can you not do that?” and they are like, “No, mom, I can’t tell him.” I said, “No, no normal peer is giving that feedback, but this is the reason he is not being included, but you are a safe person for you – you are the safest person they can be with who is lovingly going to tell them to stop,” and so I had one young boy who was 12 who was obsessed with these giant roller coasters, and he couldn’t talk about anything but roller coasters, so my children who also loved Disney and they had been too many cases where roller coasters were there, so they first had this encounter and didn’t coach them, and these young men started talking about roller coasters, and my children were instructed to be very cooperative, playful, and engaged, and in so they started talking about roller coasters, and then afterwards, they started looking at me like, roller coaster or no roller coaster? Like, no roller coaster. So, they had to find the courage to say, “No, can we talk about something I like?”

Dan: Right, and I agree, it’s a fine line though because on one hand, you certainly want to have give and take and certainly, people who, like they are fixated on something, could benefit from learning how to turn their attention, but I also think that our society has a very narrow definitions of what is normal or what is typical, so let us say a person with autism does a lot of hand flapping, right? Which is a very common characteristic of someone with autism, do tell them to stop hand flapping or do you say, “Well, we just have to get used to your hand flapping because that is just part of who you are”? Samuel can often vocalize because he has trouble controlling his vocal cords because of cerebral palsy. He sometimes has vocalizations during school that are not necessarily in keeping with the conversation, but it just – sounds will come out, the peers just get used to it and they got used to it, and we never hear complaints. We just hear that, you know, that’s example and that’s just what he does, and so I think there is also that. There is also this broadening, the acceptable norms of what is acceptable and what is just a natural part of our diversity. So it’s a very complicated topic.

Sucheta: yes, yes. Yeah, I know, and I often describe this to people that it’s like Goldilocks effect. It can’t be too big, it can’t be too small, it has to be just right, but that just right is contextually sensitive and it is individually appropriate.

Dan: It’s subjective and it’s culturally subjective too. If you think about disability as one of our – as a culture or autism, or whatever it might be, they have their own culture. I’m not a person with autism, but people with autism have their own cultural norms, and we should respect those that understand that just because they are not our norms, we are the dominant culture. Like any dominant culture, we are meeting people who don’t have disabilities, the ideally dominant culture becomes more accepting of minority cultures and more respectful of them.

Sucheta: Yeah, and I think the only point that I was trying to make, even with my – giving opportunity for these children with disabilities to interact with proto-normal kids which is my kids was only to give them an opportunity to give feedback, not to correct them and fix them, but understand that it is possible to receive feedback so that you can speak each of those languages, as that’s when the communication gets completed, right? If I’m saying something and you never understand me, and if another person adjusts, but I never do, then there is a meeting of the minds may not happen, and as he perfectly mentioned that it doesn’t need to be I have 100% your language, but I need to make effort to translate some of the words that I never understand what you mean by them, but if I understand that as part of your repertoire, then I can say, oh, this means this to me.

Dan: Sure, [0:33:14], although I challenge you to think about one thing, you are using the word normal to describe your kids which would suggest these other kids are not normal, and so I think you keep that in mind in your language.

Sucheta: Yes, and I apologize. You are absolutely right. What I mean, what is neurotypical – sorry, that is what –

Dan: Sure, neurotypical is a good word.

Sucheta: Neurotypical is a better word than normal [0:33:35].

Dan: Exactly. Sorry, that’s [0:33:39] – see what I mean about being –

Sucheta: I might [0:33:39] edit this.

Dan: No, don’t edit it. It’s part of the conversation, but this is what I mean about not – I don’t want to do this every day, be the disability rights advocate, but it’s also sometimes helpful to just point out things that all of us [0:33:52] fall into, and listen, if I haven’t had this experience and it wasn’t working in the disability of world full-time, if I wasn’t at the Institute on Disability, I wouldn’t have that sensibility for all those.

Sucheta: You are right acclamation point and, this is truly a slip of the tongue because this is such an important part of what I do every day, that who is making the most effort, and I feel as an advocate for children and adults with disabilities that if all the burden is put on those who are already dealing with the disadvantages created by their disability, we are being unfair, and so burden are you willing to share. I do think that as we went back and forth about this that the knowledge is to make allowances for this conversation to happen. Do you even see? To me, it’s like you’re coming to my house for dinner and I need to really take the time to understand what you would like to eat and not like to eat, and the conversation does not mean that I’m never going to cook what you don’t like or I only cook this so you eat what I have, but just having that wonderful human negotiation to say, “I would love to see you be part of my life and this is what I’m willing to do. Is this helping you?”

Dan: Right, and that is why – I think that is why it’s important, too, look at the most marginalized groups in our culture, and in this case, disability which is why my most recent project Intelligent Lives focuses so much on people with intellectual disabilities, because statistically, people with intellectual disabilities are the most segregated group of people in the United States and internationally. I mean, in the US, only 17% of students with a label of intellectual disability are included in regular education, and only about 40% will graduate, and then only about 15% of adults with intellectual disability will be employed, and those are the worst statistical numbers of any subgroup of disability. So, that’s why I decided to look at this whole notion of how do we perceive intelligence and how do we treat people with intellectual disabilities in school, in life, and are there ways to shift that paradigm, to expand our perception of intelligence beyond things like IQ tests or SAT scores, or any standardized tests and look more broadly at how people [0:35:51] the world in very interesting and sophisticated, and compelling ways that can be measured by any numeric tests, and it will are the paradigm shifters? And that’s when I ended up finding my three main subjects for my film, Mike, [0:36:04] and Naomi, and followed them for three years in order to make the film Intelligent Lives. So, that’s really what drove me to make this film, was thinking, Samuel is not the only one that deserves to be included. I really believe that all students, regardless of the disability should have a chance to be included in regular school and in college, and in employment.

Sucheta: You know, you bring this repeatedly, you’re hitting on certain aspects of this process of coming to that place where a lovely human encountering can happen. You said changing minds, looking at things broadly and shifting paradigms, and from the work of executive function that I know, one of the biggest challenge, that there are two roadblocks in terms of one’s own cognitive and social emotional abilities that come in the way, and then there’s cultural roadblocks too, and that is the inability to shift mental set is a true genuine cognitive limitation related to executive function, and second is attention, not paying attention or not giving enough invested awareness centric focus to other person tends to create roadblocks in understanding the needs of others, seeing the points of view of others, and really taking the [0:37:14] on changing your own ways, and so I do that individual work, and then I see also societally, certain privileged lives tend to be less flexible. I’m not sure if you are aware of the research. They did this study where researchers literally stood at this traffic light, and then the stop sign, I think four way stop sign and they found that people driving expensive luxury cars tended to roll through the stop sign much more than people who drove less expensive cars. So, there is a little bit of arrogance associated with privilege and I think this is a privilege of being neurotypical, that there is a little bit of arrogance that you adjust to me rather than I adjust to you.

Dan: Right, and it’s interesting you say that because one of the three people I filmed, Mike [0:38:01] who is a Syracuse University student, he is actually co-teaching classes up there, he’s got a really wonderful circle of friends, graduate students, doctoral students, very full life, has a girlfriend, and he was given an IQ of 40 when he was a kid which, [0:38:13] IQ scores would be considered profoundly intellectually disabled. Anyway, he is one of the most kind of responsive, empathetic, socially adept people I have ever met, and so as we say, it’s like, what are we measuring here and what are we valuing in society? If we have somebody that can be a wonderful friend that can be carrying and be with you and really tuned in, is there any reason that we should exclude them from any aspect of society or value their skills any less than any other skill?

Sucheta: And you know, I thought a lot about this: why are we so unwilling to shift and accommodate? And I think the primary reason is speed of processing and I think one of the things that people feel by associating with people with disabilities will be bringing on this slowness which will create a disadvantage for me because things are not going to move fast and I want to move fast in life. I want to go places, I want to reach the accolades or what ever the invisible height that I’m trying to achieve. There is that fear which is so sad because in fact, that is where the most beautiful thing is happening which is the human, like you said, the most resilient and most kind and compassionate human being that you will ever see is happening right in that space.

Dan: Right, exactly, and you put your finger on something really interesting that I’m sure would take a lot of time that we may not have to discuss, but saying that again, some of this is cultural, I think certain cultures are more about speed, speed, speed, fast, fast, fast, go, go, go than other cultures, but I also think sometimes, what we will lose in all of that is, what are we really living for? Are we living – and listen, I am to blame as much as anyone. I like to have very productive days, I work really hard, I like to move fast in my life, but I also sometimes just like to slow down, just be with my family or read a book, or take a walk, or just smell the fresh air. I just appreciate the moment, and when people look back on their lives and say, what were your favorite parts of your life? It probably wasn’t commuting to work or rushing to do this, or speeding to do that. It was probably visa really wonderful moments that you just had time to cherish your family, your friends, your relationships in your own time, and those of us in the world who can actually take time to do that can learn from each other, and believe me, I needed to learn that from a lot of other people. I have a lot of work to do in my own area in that realm.

Sucheta: You know, I have two young boys who are, I think same age as your children. One is going to turn 21 pretty soon and one is 23, and this Christmas, I gave them Pico Ayer’s book, Art of Stillness, and he says tongue-in-cheek that we take time to go on vacations or do these meditation and retrieve, places, to find a way to slow down, and then we come back to busy lives, but we are really reluctant to consider have about slowing down where we are? And that has been like a true mission. A lot of my work, I have found that one of the ways to master your lack of being able to focus or distractibility or inability to shift your mental set or inability to remember to remember, all that requires time and it requires you to give yourself that time, and that requires attention and awareness, and we just don’t have time. It’s like driving on the highway at full speed because we are running late for an appointment with an empty tank. We are thinking if I pull over to put gas, going to be late. How foolish!

Dan: Yeah, exactly, and I think all my films, I really tried hard to find people that I learn from and that I can learn from, and so when I did including Samuel, I obviously learned from Samuel and all of the people I have filmed. I did a big film called Who Cares about Kelsey? and that was about a student with emotional/behavioral disabilities talking about what it took for her to navigate high school, and then the people around her that helped her to be successful, and then my most recent film I did, Intelligent Lives, I also did for companion films just on people with disabilities transitioning from high school to college and career and how they all are using such innovative approaches to successful transition, and in another film I did last year was on national television here called apps on Mr. Connolly has ALS, and it was a very profound experience for me because it was about Samuel’s own high school principal who lost the ability to speak because of ALS, and then transitioning to being a person with a disability, and then he and Samuel actually ended up starting to communicate with each other using their communication devices because they both used devices because they couldn’t speak easily, and it was easily a film, very profound film for me to make anything for people who watch because it was very much about what it means to be human and how perceptions of him, of Mr. Connolly changed from other people was he lost the ability to speak. People started speaking to him differently even though he was the same person inside, but also the creative appreciation he started having for his students with disabilities because he could never understand what it truly meant to be disabled until he became a disabled person himself. So, I encourage your listeners that film is free to watching YouTube now, so just search “Mr. Connolly Has ALS,” or you can put a link in your podcast, and also, all the transition films I did as part of Intelligent Lives are free to watch online. So, yeah.

Sucheta: I have watched three of your films, not the most recent one which I will, but every film has made me cry, and I think what is really touching about that if you have a wonderful way of showing humanity in me. I’m not talking about your subjects, but you know, I think as I see – saw every main lead of your movie just reminded me of how hard life is, and I’m not doing enough. I’m just thinking, in what ways can I affect life are positively the way these individuals are affecting their own lives and making a difference? It’s truly genuinely a wonderful experience, and I highly encourage everybody to watch these films with your family members. If you’re not as lucky as I am to work with individuals with disabilities so closely, this will bring you close.

Dan, thank you so much for what you do and what you have done, telling your personal story, and most importantly, standing up for the rights of those don’t have a privilege to do so readily or easily. As we close our podcast, do you have anything else you would like to share with us?

Dan: So, I just appreciate the time so much, and we do have one site where people can go to to kind of get links to all my films, is just danhabibfilms.org, so I just want to thank you very much and thank you for the work you do. Sample has had many amazing speech therapists in his life who have done so much and certainly in your work and executive functioning, it also rings very true to me for my older son. Samuel’s executive function’s amazing – he never forgets anything. [0:44:42] needed some support in that, and he is now finding his way, and also finding his own strengths and tapping into those. It’s a beautiful thing to behold. So, thank you for having me today.

Sucheta: Absolutely. Great pleasure to have you and talk with you.

Dan: Thank you.

Producer: All right, that’s all the time we have for today. On behalf of our host, Sucheta Kamath, today’s guest Dan Habib and all of us at Cerebral Matters, of thank you for tuning in and listening today. We look forward to seeing you again right here next week on Full Prefrontal.