RJ Mitte on Living Confidently with Cerebral Palsy

Episode Transcript

Dr. Correa:
Saludos and hello, I'm Daniel Correa.

Dr. Nath:
And I'm Audrey Nath.

Dr. Correa:
We're two neurologists and fellow brain geeks hosting The Brain and Life Podcast. This show, The Brain and Life Magazine, and website are all brought to you by the American Academy of Neurology.

Dr. Nath:
We're so glad you're joining us. We'll be here each week for conversations and interviews with community members, celebrities, and experts on brain health and living with neurologic conditions. Now let's get to today's show. This week, I got to speak with the star of Breaking Bad, RJ Mitte, about cerebral palsy, and disability, and bullying, and acting, and confidence, and everything in between, Daniel. It was amazing.

Dr. Correa:
I really enjoyed him in that show. I mean, it was really interesting, even in that show, to see him kind of get to grow up as an actor. I'm really interested to see how he's incorporated his experiences with cerebral palsy into his acting and everything that he does.

Dr. Nath:
He spoke about what bullying was like as a child with his physical disabilities. I would like to know, I'd like to ask a personal question. Daniel, did you experience bullying when you were a kid?

Dr. Correa:
Yeah, I did. I started school, preschool and Montessori, in Puerto Rico, and I spoke Spanish and my parents taught me some English. And of course we learned it as part of our school, but then we moved to Colorado Springs for my kindergarten. And it had turned out, Colorado Springs not a whole lot of Spanish speaking people in that community. I stood out very much as different. My accent in English made the teachers treat me differently, had a different expectation. The teachers really just saw me as somehow less intelligent, and kind of categorized me that way in the classroom. And they told my parents that I couldn't learn both languages at once, and tried to pressure my parents into only teaching me English.

Dr. Nath:
Oh, that is awful and not true, by the way. Kids can absolutely learn more than one language.

Dr. Correa:
Absolutely. We all should.

Dr. Nath:
Do you think that having gone through that experience where your intelligence was underestimated, and you were treated differently, has that changed your perspective or made you more empathetic with your patients who have physical disabilities?

Dr. Correa:
Completely. I think, I went through a period of time myself when I was younger where I felt very much like I had to assimilate and not speak with an accent and not stand out as Latino to be successful. But over time I've embraced those unique things about myself, and my culture, and background. And I think those experiences have helped me really have an opportunity to understand that everyone comes from a different place, brings many different and exciting perspectives. And then within our patients and the family members that we help take care of, just having a more understanding for all the different things that they may be going through and how the things that they live with, whether it's a neurologic condition or anything else, impacts how they interact with the community and the world around us.

Dr. Nath:
Thank you for sharing, Daniel. We here at Brain and Life are thrilled to be speaking with movie star, fashion model, and disabilities advocate, with cerebral palsy, RJ Mitte. Many of us know RJ from his role as Walt Jr in the smash hit and Emmy Award winning show Breaking Bad. But he is also the founder of Cut the Bull, an anti-bullying advocacy group, spokesperson for I Am PWD, person with disability, which advocates for inclusion of people with disabilities in arts and media, and celebrity ambassador for the organization United Cerebral Palsy, and he's co-hosted coverage of the Paralympic games. I think that's awesome. He's now acting in a superhero series on Netflix called Guardians of Justice. He's accomplished all of those things and isn't even 30 years old yet. So now I feel like a huge slacker. Welcome to the Brain and Life podcast, RJ Mitte.

RJ Mitte:
Thank you. Thank you so much, and don't feel that bad. I'll be 30 soon.

Dr. Nath:
So many things I want to start with, but I want to start with something basic that maybe people ask you about all the time. The casting call for your role in Breaking Bad was looking for a teenager with, I quote, "dark hair, big eyebrows, and mild cerebral palsy." So for those listeners who haven't seen RJ, I can see him right now. He does have dark hair, and reasonably big eyebrows, and mild cerebral palsy. How did you react to that? When you saw this casting call, was that something you had been waiting for your whole life?

RJ Mitte:
You don't really know what you've been waiting for your whole life until you have it or it hits you with it, and when I first got this audition, at the time, I only had been acting for a little over a year.

Dr. Nath:
Oh, wow.

RJ Mitte:
I was on other shows as an extra, on Hannah Montana, and Everybody Hates Chris, and Weeds, and many other shows and movies as an extra worker. And it was something that I was really into when I got the opportunity to start an acting career and work in the media. And I was auditioning for a bunch of shows, but nothing was really hitting me. There was nothing that really described really me. It was things that, yeah, I could do, but really didn't fit the role until this role.

Dr. Nath:
Right.

RJ Mitte:
And when I saw it, and literally the breakdown was dark hair, big eyebrows, and mild cerebral palsy, I literally was like, "That's me."

Dr. Nath:
That's it.

RJ Mitte:
That is me. I got this. And my team was like, "You got this," and everyone around me was like, "You got this."

Dr. Nath:
Oh, man.

RJ Mitte:
And just the one thing that I have learned over the years of working in the industry, and actually just any job that you're going to be working in, is that if you have the mentality of I got this...

Dr. Nath:
Yeah.

RJ Mitte:
That I could do this, and this is what I want, you're going to get it. Whether in hindsight you want it or not.

Dr. Nath:
Oh, wow. That's an interesting way to look at it.

RJ Mitte:
I went in, I auditioned five times, four in Los Angeles and once in New Mexico, against many other people with cerebral palsy and not, and they called me about hour later saying that I had the role and to fly back to LA and pack my bags because I will be filming for the next six months.

Dr. Nath:
Oh, my goodness. I can't even imagine. How do you keep your confidence up or did you have any strategies, I'm just curious, to keep you from just being mired in self doubt? What's your source of confidence?

RJ Mitte:
It's really hard, like you said, keeping your confidence and kind of staying positive about the role when you really don't know.

Dr. Nath:
Yeah.

RJ Mitte:
And this isn't just for acting, but this is all life. We go into jobs, we go into places, and we're like, "Am I qualified? Can I do this role? Can I be a part of this business?" Whatever that may be, and until you're in it, you don't know. And I find the biggest thing is just enjoying what you're doing, no matter, it could be a barista, it could be working at McDonald's or whatever, but finding enjoyment out of your project, out of your work, but enjoy it and make the best of it. And that's what I go into all my jobs with is that enjoyment of am I going to make the impact that I want? Am I going to leave this work and this job better than I found it?

Dr. Nath:
Yeah.

RJ Mitte:
And that mentality for a lot of it's what keeps me going. It doesn't necessarily mean I always have the confidence or the belief in myself that I'll do it, but it doesn't mean that I'm not capable of doing it, or I don't believe I have the power of doing it. And so a lot of times it's okay not to be confident.

Dr. Nath:
Sure.

RJ Mitte:
But at the end of the day, though, it's you and your life, and I find that you have to always want the best for it.

Dr. Nath:
That takes, I mean, when you say it, it sounds simple, but that takes a lot of knowing who you are as a person, which I work with a lot of children who definitely struggle with that and a lot of adults who really struggle with that and kind of hide behind different titles or different things, but you're right. It is all about mindfulness and giving it all of yourself, no matter what you do. I'm curious about how you got that strength. I mean, looking back, you've spoken about bullying in a lot of your advocacy work, and I was going back and reading about your own background as a kid with a visible disability, and it's heartbreaking. You were bullied, you sustained physical injuries from assaults as a child. How did you go from that and being literally physically beaten down to having such a strong core of self, or do you think those things are related?

RJ Mitte:
I think they're related in many capacities. I mean, you make two decisions when you're faced with certain challenges. You either run from them or you face some head on, no matter the consequences, and for me, I was very lucky I grew up with some very strong grandparents on both sides of my family...

Dr. Nath:
Awesome.

RJ Mitte:
Who instilled mentalities in me that helped me be who I am today and one of those was don't take crap from anyone.

Dr. Nath:
Right.

RJ Mitte:
And be myself and if someone doesn't understand it, reasonably and non confrontationally, explain. A lot of people attack people or see people from lack of understanding. They have this image of what they see of you and they project their insecurities, or their hate, or their disbelief that they have about themselves onto other people. And the realization that you have to find, that I was very lucky at a young age to find, was it's not me. I'm not the issue. They are the issue. They're talking about themselves.

Dr. Nath:
Right. Yes.

RJ Mitte:
They're not talking about you. Yeah, they may be attacking that you walk funny or you talk funny or whatever it may be, but it's because they have that same dilemma within themselves. And no matter how much they try to break you down, you still go home and sleep and have your life, and they have to go back to whatever life gave them that idea or that mentality.

Dr. Nath:
Yeah.

RJ Mitte:
And so you have to realize don't hate yourself for how other people see you. Don't devalue who you are as an individual just because someone else doesn't see you as valuable. And when it comes to having a disability, a lot of people look at disability as a liability and there's a neurological connection to those two words that we've put into society. That if you have a disability, you can't do this, or you can't do that, or you're sick, or you're ill, or you're not smart, or whatever these things are. And that, in the mind, is a liability. Well, the way that I grew up was disability is an asset. A lot of my grandparents had diabetes or polio or stroke.

Dr. Nath:
Oh, wow.

RJ Mitte:
Fully paralyzed, in wheelchairs, and the thing was is I never saw them as disabled. I actually don't even see myself as disabled, but what I do see of myself is the opportunity and the knowledge that my disability gave to me, the opportunities that I had through physical therapy, and occupational therapy, and speech therapy, and surgeries, and so on and so forth of everything that comes with it.

Dr. Nath:
I find it interesting that you've walked in so many different spaces. You've been in the fashion industry, you had a GAP campaign, you've walked runways in Europe, which is not the kind of place where I would normally think of there being somebody with a physical disability. What's it like to be walking a runway in Europe with a bunch of able bodied people? Were you self-conscious, or did you feel empowered?

RJ Mitte:
I think a little bit both. A lot of people are going to say no, and it could be for numerous reasons. It could be for your disability, or it could be you're blonde instead of brunette, or you're 10 pounds over, or you're 10 pounds under. And there's so many different things, but you have to learn how not to beat yourself up.

Dr. Nath:
Yeah.

RJ Mitte:
Right? We are our own worst enemy when it comes to our mental health, and then that carries over to our physical health, right? And you have to realize, at the end of the day, that this wasn't meant for you at that moment. And if it's something that you truly want, you work towards it. You work out on a regular basis, or you do whatever you feel that you need to do to be that better person or whatever it is that you're going for. And whatever you may feel self-conscious about, utilize that as an asset.

Dr. Nath:
Yeah.

RJ Mitte:
If you may have missing appendages, or missing limbs, or whatever it may be, something visual that you're self conscious about, or you have a neurological issue where you stutter, or you repeat, or do whatever, learn how to utilize that for your interest. Learn how to actually control it in a way where it doesn't inhibit you from doing your job. And that's what I've learned through my disability, in my challenges, is utilizing it as an asset.

Dr. Nath:
You mentioned the unforgiving industry that is movies and TV and modeling. Do you think that you and your role as Walt Jr, with a visible disability on screen, do you think you've changed the industry? Do you think you see now more roles for people with disabilities?

RJ Mitte:
A hundred percent.

Dr. Nath:
That's awesome.

RJ Mitte:
Did I do it? Did I do it alone? No. I'm one of millions around the world, millions of working artists with disabilities around the world and, yes, did Breaking Bad help lessen the stigma on working with people with disabilities or just how people viewed people with disabilities? I believe so.

Dr. Nath:
Yeah.

RJ Mitte:
But over the last 10 years, I've definitely seen a great change in the industry when it comes to diversification and representation.

Dr. Nath:
I think that you are now in people's living rooms and in people's homes as an example of someone they know. I realize, on the show, I think you used crutches and things that you don't actually necessarily need to use in person.

RJ Mitte:
Yes.

Dr. Nath:
But they now have that image in their mind. I want to ask you about your more recent project, which I think my husband is watching right now. He's a fan.

RJ Mitte:
Oh, my.

Dr. Nath:
Guardians of Justice, it's a superhero story, but a little off the wall and a little abstract, a little dark. Can you tell us a little about your character, The Mind Master, for those of you who haven't seen it?

RJ Mitte:
Yes.

Dr. Nath:
Are you a superhero? Are you a villain? What are you?

RJ Mitte:
I'm a villain. I'm a very proud villain, actually.

Dr. Nath:
Nice.

RJ Mitte:
Just FYI, I don't really necessarily know if this series is child appropriate, being a superhero movie, but it is a superhero TV. It's a mini series. The series is part live action, part animation, and I play a character named Mind Master who is kind of a bad guy, kind of a real bad guy. I have mind control and can do a couple other things that I'm not going to do.

Dr. Nath:
Everyone has to watch and see what he does. RJ, thank you for pushing boundaries, in every way. I mean, even including within the superhero universes, which is kind of a fascinating concept to push the boundaries there, but it is interesting that even people who are given the gift of flight and infinite strength aren't allowed to be themselves. And that's something that we should be dismantling now. And I think it's awesome that you're the one doing it and turning upside down what is normal or what is beautiful in media, in fashion. How can people stay in touch with you? Is there a particular social media where people can see what you're up to?

RJ Mitte:
Yeah. Instagram is definitely one of those things that I actually work very easy on Instagram, and Facebook, and Twitter, and all that. I have access to all of those things. You can find me @RJMitte across platforms. And going back to the view and turning that view and experiencing that, no matter what part of your life and where you are in it, you have the opportunity to make it better.

Dr. Nath:
Absolutely.

RJ Mitte:
And it's hard to always see that, but always be yourself and expressing yourself on your views and who you are no matter what is so important. And that a lot of times the wrong people get the opportunity to do that.

Dr. Nath:
Yeah.

RJ Mitte:
And if more people were to do that, I think we would live in a much better world.

Dr. Nath:
Thank you. Agree. Please come back and visit us again when you're doing something even more off the wall abstract than what you're doing now.

RJ Mitte:
Yeah, any time. No, I'm a fan of the magazine and everything that y'all do and awareness of what y'all bring to the community. And I really believe that it's so important to provide this type of information, to have these types of conversations, and to put myself out there as well as y'all are to really change the face and the focus of what it is to have neurological disorders or whatever it may be you're facing and normalize it.

Dr. Nath:
Yes.

RJ Mitte:
Because this is normal. This is not abnormal stuff.

Dr. Nath:
It's common.

RJ Mitte:
I mean, everyone is affected by, and oddly enough, there's a lot of people in this world that don't even know they have these types of issues.

Dr. Nath:
Oh, absolutely.

RJ Mitte:
Or neurological stuff.

Dr. Nath:
It can happen to anybody. Absolutely. Yeah.

RJ Mitte:
And I've seen it, and the thing is, just be strong and learn that you can overcome anything.

Dr. Nath:
Thank you for joining us. It's been awesome talking to you.

RJ Mitte:
Thank you.

Dr. Nath:
We'll follow you on Instagram and stay in touch. To help us all understand more about cerebral palsy and the effect bullying has on people with this condition, I sat down with Dr. Peter Raffalli and Dr. Elizabeth Barkoudah. To learn more about cerebral palsy and the issue of bullying amongst pediatric neurology patients, I caught up with two pediatric neurologists at Boston Children's. Peter Raffalli, MD runs the bullying and cyber bullying prevention and advocacy collaborative team, or BACPAC for short. And Elizabeth Barkoudah, MD is a neurodevelopmental neurologist who specializes in the care of patients with cerebral palsy. But more importantly, these two were both my attendings back when I was a resident and two of the sweetest people I know. So welcome to the podcast.

Dr. Raffalli:
Thank you.

Dr. Barkoudah:
Thank you for having us.

Dr. Raffalli:
Yeah.

Dr. Nath:
So, I have so many questions for both of you. For our patients with cerebral palsy, what sorts of adaptive activities have you heard about that they can participate in to help boost confidence, or what have your patients told you about?

Dr. Barkoudah:
Oh, that's a good question. This has been an overarching question that has been there from the start of time, if you ask me. You can imagine that activities would be based off of functional abilities and so those who have more functional abilities have a wider berth of options available to them, but a lot of sporting associations or communities are getting smart at figuring out creative ways. So for example, there is a fencing club here in Boston who has an adaptive fencing league or group.

Dr. Nath:
That is so cool.

Dr. Barkoudah:
I think it's amazing how they do it in wheelchairs.

Dr. Nath:
That's right.

Dr. Barkoudah:
And how they figure out how to make it as even as possible based on abilities. Of course, the Olympics, I think, or the Paralympics, I think, has been great at opening up options where people can visually see, oh, look, you can ski. You can play basketball. You can play volleyball. You can do all sorts of activities with the right equipment, the right modifications, but in the community, finding those options, I think, is a little bit more challenging. And you could imagine, thinking about the country as a whole, those who live in bigger cities have more opportunities because there are more facilities than somebody who lives in rural United States.

Dr. Barkoudah:
So I think there are definitely factors and layers that impact this. But if you ask me from the time I started in the cerebral palsy world to now, there are many more opportunities, and in fact, every year flyers and brochures come up, and we oftentimes are spanning them out to our patient population so that they know, oh, okay, this opportunity is available, and look, this option is here. The CP community is very tight knit as well. So there's a lot of word of mouth when somebody finds adaptive skiing- a group or a program, then it starts trickling down, and then the challenge then becomes is the balance between want and availability starts becoming problematic.

Dr. Nath:
I have a question, Dr. Raffalli, so you run the bullying clinic at Boston Children's Neurology. RJ Mitte told us about his experiences with bullying, and it's just tragic. He had broken bones, he had just a lot of physical violence against him. Do you find that these attacks appear to be proportional to a patient's degree of motor disability, or is it not? What do you think?

Dr. Raffalli:
I don't think there's any data on whether or not it definitely follows the degree of disability, and actually, I think the kids with intellectual disability sometimes get bullied a little bit less because they're isolated in the school, often in substantially separate special ed classrooms.

Dr. Nath:
That makes sense.

Dr. Raffalli:
So they don't have that exposure to the other peers, but I think the kids who are very functional but in wheelchairs or with crutches or whatever it is that makes it stand out that they have a disability, clearly their risk is very high and much higher than the general population. And we've seen this with all sorts of disabilities across the board. This was one of the reasons that I started this clinic was because, as a child neurologist in practice, I was constantly being asked about bullying of my patients, and I had had an interest from the very get go, the increase in aggression among children and adolescents that the AAP, the American Academy of Pediatrics has been reporting on now for many years.

Dr. Raffalli:
And so I came up with this idea to do this clinic and since this inception of BACPAC, there's been an explosion in studies and bullying. And one of the clear conclusions that's come out of many studies is that clearly any kind of medical problem increases your risk for bullying. It's a sad fact, but unfortunately when kids see a kid with a difference, and particularly if that particular kid, the offender I'm talking about, has a tendency to be a domineering personality who lacks empathy skills, and we get that a lot with bullies. People think they're insecure. Actually the personality trait they most demonstrate is that they're kind of callous and unemotional and not empathetic. And so they see a difference in another kid and they make fun of it. That's usually how it starts, by making fun, and then it sometimes escalates.

Dr. Raffalli:
So the kids with the disabilities, I think in general, but it's amazing to me how kids with CP get bullied. You would think that you would lay off a kid that can't walk or that has difficulty, and yet they get terribly bullied, and it's really a horrible thing. But then again, I have to tell you, one of the first groups that I was asked to speak to was from our neuro-oncology division to a brain tumor survivor group. And they were finding that as they tried to assimilate back into schools, they were getting bullied at a high frequency because their appearance was different after radiation or whatever they went through. And I never would've thought that anybody in their right mind would bully somebody with a brain tumor, but it happens. It really happens. Yeah. Yeah.

Dr. Nath:
Liz, you see so many cerebral palsy patients. Do they report to you that they are bullied more in person, or do they ever mention to you cyber bullying as well?

Dr. Barkoudah:
That's a good question. If you take one step back, many times, I don't think it's reported unless somebody goes and asks.

Dr. Nath:
Yeah, okay.

Dr. Raffalli:
That's very true.

Dr. Barkoudah:
And it takes a very savvy provider or support member, whoever that person might be, to actually bring it up before somebody actually says, "Well, yeah." And sometimes when I frame it to the kids, when I first say bullying, they'll say no. And then if you reframe it and say, "Well, does anybody ever say this to you or does anybody ever do this?" They actually start saying, "Well, yeah, that does happen." So I don't know if understanding the true definition of bullying is grasped.

Dr. Barkoudah:
If you asked me back when I was younger what I would've interpreted as bullying, it's a little bit different today. And part of it was just we were children, and we didn't quite know what the definitions were and what they meant. But as we are older, and we have more education, and now we're the provider advocating, and bringing it to awareness is definitely needed. So I think that's one step away from what your original question was, but when you actually actively go ask, I do think it happens more often than not. Then you have to actually picture the spectrum of what cerebral palsy presents like. So if you have patients with CP who are able to communicate very efficiently with you, of course, that's a much different level of engagement and information that you're going to obtain, which is completely different than somebody who has communication difficulties.

Dr. Nath:
Peter, I have a question for you.

Dr. Raffalli:
Sure.

Dr. Nath:
You run this bullying and cyber bullying clinic, and for all the people out there listening that are not in a city that has a pediatric neurology bullying clinic, what are some of the strategies that you use with your patients?

Dr. Raffalli:
Yeah, and before I get into the strategy to help them, just to bounce off of Liz's point, I often don't use the word bullying when I ask in my regular clinic, because in the bullying clinic obviously we're meeting for that purpose, but when I'm seeing patients in the general neurology clinic, what I'll do is I'll say, I start with the school social climate. I'll ask, "Do you like your school? Are people friendly there? Do you ever see anybody picking on somebody else?" And then I finally say, "Does anybody pick on you?" Again, avoiding the bullying word because that hooks people, as Liz was pointing out.

Dr. Raffalli:
And then I think she makes this excellent point that if you're kind of gentle about it, give them time to answer, a lot of times they will say, "Well, there is this one kid on the bus that keeps..." So it becomes more apparent that there's a problem. And the other thing that she pointed out that's very important and worth repeating is you have to think of it and you have to ask a lot. So we try to get primary cares to get more involved in that and actually having, like they screen for other pediatric health hazards, to actually try to include at least one question as to whether or not they're having any troubles with peer victimization at school. As far as what we advise when we are in the bullying clinic, and we have somebody who's being bullied, first thing we tell them is that mediation has been shown in studies to be detrimental in bullying situations.

Dr. Nath:
What do you mean by that?

Dr. Raffalli:
Bringing the victim and the bully together for what I call a cup of coffee and a handshake is not going to help.

Dr. Nath:
I see.

Dr. Raffalli:
In fact, it usually makes it markedly worse, particularly for the victim. And the alleged perpetrator or the offender, of course, takes that as that he was told on and then blames the victim. Instead, the opposite is separation and that's the mainstay of the advice we give. By the way, you're going to notice that none of the advice that has, and this is all the evidence based stuff, we base it on the research that's been done as to what works and what doesn't work. I think the issue is that separation, none of it is rocket science, so separation is key. We try to convince the schools to keep them apart.

Dr. Raffalli:
If the bullying is really egregious and particularly if it's middle school, high school level, where somebody could get seriously hurt or violent, we say that, listen, in coming school years ongoing, that it would be good if they're not putting the same cluster or same grade group so that they don't share classes, they don't share lunch, they don't see each other often. So separation's very important. Within the classroom, you can separate them by distance so they're just not close enough for the kid to take jabs and, if necessary, classrooms can be changed. When we do that, we tell the school, "Please, don't inconvenience the victim. That's not appropriate." If somebody has to switch a classroom because there's a dysfunctional relationship, it should be the person who's doing the bullying that should have to change, not the victim, unless the victim wants to change. So that's one thing.

Dr. Raffalli:
And the other thing we try to tell them to do is to have a safe person, which means an adult that's fairly consistently present at the school and who is willing to play that role for the child. It has to be somebody of the child's choosing because the paramount thing is it has to be somebody the kid trusts and is comfortable talking to. So if the school principal picks somebody as his safe person, he's not going to go to the safe person. So we want him or her to pick it and then that person is there to listen on short notice if there's a problem. And then also willing to advocate for the victim at the level of the principal's office, i.e., I think we may be having a problem here.

Dr. Raffalli:
In Massachusetts, and actually in all of the states in the United States, there's anti-bullying legislation. The specifics vary from state to state. In Massachusetts, we happen to have a subsection of the bullying law for kids with special needs, which is the kids on IEPs, which is fairly unique. But either way, the spirit of these laws is to put the onus on the schools to identify bullying and to intervene and to get it to stop when it's happening. They are responsible by law to do this, and so we remind the parents of all of this information, and we also talk about not bullying back, because it usually just gets the victim in trouble. And we talk about, if possible, leaving the situation and finding the nearest adult, rather than trying to argue with the bully or bully back, because it doesn't generally help.

Dr. Nath:
That makes sense. So basically separation and then a trusted adult to advocate.

Dr. Raffalli:
Right.

Dr. Nath:
But then my question for that, for separation, what do we do about cyber bullying and Instagram comments?

Dr. Raffalli:
Right. Right.

Dr. Nath:
They could be in a different part of the country, and it can still happen. What works for that, or what have you been telling people about that?

Dr. Raffalli:
Yeah, and most of the laws, by the way, do stipulate that cyber bullying is still under the school's jurisdiction.

Dr. Nath:
Oh, interesting. Okay.

Dr. Raffalli:
If it involves schoolmates and if it's having a negative impact on the victim's school life.

Dr. Nath:
Okay.

Dr. Raffalli:
So they used to have the excuse, well, it's cyber bullying, this is happening off campus, this is not our problem. And so the law took care of that and said, "Yes, you need to intervene."

Dr. Nath:
That's good to know.

Dr. Raffalli:
And separation on the internet, what we tell people is don't delete the negative messages, but also don't respond. It's very important, don't respond, because they're baiting you. It's classic trolling. They're hoping to get you emotional and to say something and then to continue the abuse. So you want to not respond. You don't want to delete it because you may need it as evidence later if you have to go further with it. If it gets really bad and you have to go to a police report or something, you want to have the messages left, or you may just want to have them to show the school so that the school believes you.

Dr. Nath:
Yeah.

Dr. Raffalli:
We say to parents, "Don't take away their internet privileges. That's not fair." In this day and age, kids, to tell them that they can't use their media is just not fair to them. We do tell them to block the person who sent them the nasty email and anybody else who joined in. We tell them that they themselves should not join in on bashing of others. So if they see that a bunch of the friends they're talking with start bashing on somebody, they should just not comment and just don't get involved. And then of course, in addition to the blocking tools, which all of the domains have, there is always the report tool where you can report to the domain inappropriate behavior by another member, and then sometimes the domain will investigate and shut that person's account down if they find that it was abusive. So those are the strategies we use. By the way, kids with CP that I've seen in the bullying clinic definitely get cyber bullied and if you think about it, as Liz was pointing out, they often depend a lot on technology for communication and so on.

Dr. Nath:
Yeah. Right.

Dr. Raffalli:
And so they're especially on the internet, and so it's going to happen. So their social life is on the internet, like it is with all the kids.

Dr. Nath:
From both of you, for the kids with cerebral palsy that may be listening to this show in all parts of the country, is there anything that you want to tell them?

Dr. Barkoudah:
Sure. You can be whatever you put your mind to. The patients that I get to be involved in their life, for me, it's just such an honor. I go to clinic and, for me, it's one giant social day for CP clinic. I have patients who know that their job for me is to come in with a new joke, and I look forward to it. I have a few patients who I hire them to make me something. So they're in woodwork at school, and I'll give them a couple choices of things that I'm interested in. I am interested in them as a person, and I want them to have the opportunities that any of us or any of our children have, which I recognize is not equal in this country, but I view them as the world is their oyster. We just have to figure out a way to make it work for that particular person.

Dr. Raffalli:
Yeah. I think that, for me, just since I'm trying to cover the bullying front, what I tell every kid that I see in the bullying clinic is, first of all, thank you for coming in. It was really courageous for you to be willing to talk about what's happening, because that does take a lot of courage. It's not a pleasant topic. But I also tell them that it's extremely important that they understand that bullying is never the victim's fault. So if you're being bullied, and they're going try to make you feel like it's your fault. They're going to call you lame. They're going to make fun of you, but don't believe them. Bullying is considered abusive behavior. It's considered abuse, and I don't care what they think of you, whether they think you're different, annoying. I could be the most annoying person in the world. I don't deserve to be abused and neither to you.

Dr. Raffalli:
And this is not your fault, it's their fault, and do your best to... Your parents will always be your best advocates and your doctors. So definitely let your parents know. Don't keep it inside, feel free. I know that you worry that if you tell adults that it'll get worse, but I have to tell you, the studies show that doing nothing doesn't help. The bullies just continue their behaviors. In fact, they sort of feel like maybe they're justified because nobody's doing anything to stop them. So it's a tough situation, but the adults certainly want to protect you and will be upset that you're being harassed or taunted. And they're going to want very badly to work to try to make it better for you, particularly your parents, your doctors, and so on, and then they'll work with the school. So that's what I would tell them.

Dr. Nath:
Well, thank you both so much for speaking with me and our listeners about this topic.

Dr. Correa:
Thank you for joining us today on The Brain and Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episode. You can also sign up to receive The Brain and Life Magazine for free at brainandlife.org.

Dr. Nath:
Also, for each episode, you can find out how to connect with us and our guests along with great resources in the show notes. You can also reach out by email at BLPodcast@BrainandLife.org.

Dr. Correa:
Follow me, and Audrey, and The Brain and Life Magazine at your preferred social media channels.

Dr. Nath:
Special thanks to The Brain and Life team, including...

Dr. Correa:
Nicole Lussier, our public engagement program manager.

Dr. Nath:
The amazing Clayton Stansberry, our digital media production editor.

Dr. Correa:
And Andrea Weiss, our executive editor for education and news publications.

Dr. Nath:
We are your hosts.

Dr. Correa:
Daniel Correa joining you from New York City and online @NeuroDoctorCorrea.

Dr. Nath:
And Audrey Nath, beaming in from Texas and on Twitter @AudreyNathMDPhD.

Dr. Correa:
Thank you to our community members that trust us with their health and everyone living with neurologic conditions. We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
Follow and subscribe wherever you get your podcasts.

Dr. Correa:
We really appreciate it if you can give us five stars and leave a review.

Dr. Nath:
Thank you.

Dr. Correa:
This helps others find The Brain and Life Podcast.

RJ Mitte on Living Confidently with Cerebral Palsy

Additional Resources

Follow us!

Episode Transcript