Gavin McHugh is Building an Acting Career and a Community with Cerebral Palsy

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Katy Peters:
And I am Dr. Katy Peters. This is The Brain and Life Podcast.

Dr. Daniel Correa:
Welcome back or welcome to the Brain and Life Podcast. Katy, we're getting to those challenging years of our lives in our discussion today. How was your middle school and teenage years?

Dr. Katy Peters:
Well, I don't know if I should answer this question. It was definitely interesting. Public middle school. Public high school. I did experience bullying and mean girl situations. I would admit, I definitely enjoyed college and medical school. I really felt like myself and my own person. But those preteen and teenage years, I could just skip them. I was sort of half nerd hybrid, half nerd, half science fair geek and half cheerleader. So it was definitely very confusing where I fit in. But now it seems sort of ideal because I'm a combo neurologist slash podcast co-host. Is it the same for you gentlemen I guess growing up in middle school and high school?

Dr. Daniel Correa:
It seems like the reality is everyone often experiences some level of isolation and exclusion. Most bullies end up actually having had experience bullying themselves and isolation. I had times where I had a tough time, but other times I was very extroverted. It was by the time I was in high school and kind of later mid-school, middle school, I had kind of learned that I had to avoid speaking with an accent. That would make me stand out and cause me to be the focus of some bullying. I think that was a small challenge that I dealt with compared to what many other people encounter.
I also played sports and sports sometimes and other activities like that, or even theater I did for a bit too, can help kids feel like they belong and find a tribe in a community, whether that's cheerleading or science activities and science groups. But sometimes involvement even in those activities can be limited for other people if they have mobility issues or other disabilities that then just further isolate them and exclude them from the community make that challenge of belonging in your college or high school or even middle school community that much more difficult.
Maybe at least our solace is that they say as the nerds win in the end, many of us who at times in the past were isolated, end up being leaders in society and advocating for people from other perspectives. Our guest today is a young actor who lives himself with cerebral palsy, will also be joined by his mom, and I'm really excited that this is one of special episodes where we actually have a guest host come on. Some of our listeners may remember months and months ago, Dr. Aravamuthan. She is a child neurologist and specialist in cerebral palsy. We invited her back to be the guest host and interview Gavin and his mom to build on some of the discussions we've had in the past about cerebral palsy.
Then I get a chance to discuss with her as our medical expert for this episode.

Dr. Bhooma Aravamuthan:
Hello Brain and Life podcast listeners. My name is Bhooma Aravamuthan, and I'm a pediatric neurologist specializing in cerebral palsy at the Washington University School of Medicine in St. Louis Missouri. Today we are joined by Gavin McHugh. Gavin is 13 years old and plays Christopher Diaz on the TV series 9-1-1. He also has cerebral palsy. He was adopted from Riga, Latvia when he was two years old and soon wanted to follow in the footsteps of his older siblings and pursue acting.
When he's not on set, Gavin loves to swim, surf and connect with his fans on social media. We also have Gavin's mom, Lisa McHugh here with us today. Gavin and Lisa, welcome to the Brain and Life podcast.

Lisa McHugh:
You too.

Dr. Bhooma Aravamuthan:
Can you just start out, Gavin, telling me a little bit about yourself?

Gavin McHugh:
I'm 13 and a half years old and I have CP.

Dr. Bhooma Aravamuthan:
Gavin, congratulations on having your series, 9-1-1 renewed this year. Tell me a little bit about your love of acting. What really drew you to acting?

Gavin McHugh:
My siblings always were working and auditioning and I felt like that was fun and so I wanted to do it too.

Dr. Bhooma Aravamuthan:
Tell me about the things that you really love about acting. What about acting is really joyful for you?

Gavin McHugh:
I like to just be there and be there with all the cast. They're so hysterical.

Dr. Bhooma Aravamuthan:
That's awesome. A part of the reason you're here today is to talk about how you are a young person with cerebral palsy, or CP. Do you feel like having CP gives you a unique perspective on being an actor?

Gavin McHugh:
Sometimes I can't do what other people can do. There was an episode of 9-1-1 where I got to skateboard in the episode, but I can't skateboard because I have cerebral palsy.

Dr. Bhooma Aravamuthan:
How did you deal with that in the episode?

Gavin McHugh:
In the episode, the directors built, I guess it was like a cage with a skateboard in it, and I got to ride in it. It was just so much fun. The actors were pushing me around. It was so much fun.

Dr. Bhooma Aravamuthan:
Oh, wow. That does sound like a lot of fun. In your experience, how have you seen other people with CP react to seeing a person with CP on television? What sorts of things have people said to you, have other people with CP said to you?

Gavin McHugh:
My fans get really, really excited when they see me on TV. They'd be like, "Is that the kid from 9-1-1, Christopher?" They always want to take a picture with me.

Dr. Bhooma Aravamuthan:
That's great. Can you tell me a little bit, Gavin, about how you describe what CP is to other people?

Gavin McHugh:
The way I explain CP to other people is I was born with it and it never gets worse.

Dr. Bhooma Aravamuthan:
How are some of the ways CP affects you?

Gavin McHugh:
I have some struggles with CP. Like if you're walking a long distance to one of the rides in Disney where I might need a wheelchair, and my vision is sometimes I can't see where I'm going.

Dr. Bhooma Aravamuthan:
But that definitely hasn't stopped you from doing a lot of the things you enjoy doing. Can you talk to us about different ways that either on the set or at home or at school or ways that people have made sure that you've been able to do the things that you want to do?

Gavin McHugh:
I like to read and sometimes with my vision, it's hard for me to see the words and so I have a CCTV that really helps me with my vision. I play the piano and I can't see the notes, so I have to learn them by ear. Did you know also I have perfect pitch?

Dr. Bhooma Aravamuthan:
That is incredible. I definitely do not have perfect pitch, so that's great. Gavin, you've talked a lot about inspiring people with disabilities and you're definitely doing that on TV and off TV. You are really specific about using the word disability and not special needs or differently abled or some of the other words people try to use instead of the word disabled. Can you tell us a little bit about that choice and what the word disability really means to you?

Gavin McHugh:
I don't mind the word special needs because there are things that I need. Say if we were at a concert, I might need closer seats because I can't see really what's happening. When I need a closer parking spot, it's not because I am lazy, it's because I really need it.

Dr. Bhooma Aravamuthan:
That makes a lot of sense. I know anybody who's met you would never say you were lazy, so that's a really good description. Thank you. What would you say to other young people with CP who want to get into acting? What advice would you give them?

Gavin McHugh:
Well, my advice is for them to just be happy and do the things that they really want to do and work hard, and especially do not give up.

Dr. Bhooma Aravamuthan:
I love that, Gavin. That's great advice for all of us. Lisa, thanks so much for joining us today with Gavin.

Lisa McHugh:
Thanks.

Dr. Bhooma Aravamuthan:
Can you tell us a little bit about your journey to getting a CP diagnosis for Gavin? What did that entail?

Lisa McHugh:
We already had the diagnosis when we adopted Gavin. He was two and a half when he came to us. I'm a pediatric nurse and I was very aware of what a cerebral palsy diagnosis meant. It was a little scary and we were a bit hesitant because we already had four kids, but we're really blessed. Gavin's got great abilities. It could be so much worse. He is able to walk and talk and dress himself and he's really cool, gets to be on a TV show.

Dr. Bhooma Aravamuthan:
How do you explain CP to other parents, other caregivers? How would you explain it to people?

Lisa McHugh:
I say that, so he was born with it. It was an injury that occurred in his brain before birth and it affects his motor system and it makes it hard for him to walk, sometimes to talk. He can't do fine motor movements and his vision is affected. He has cortical visual impairment, so he's definitely got some challenges.

Dr. Bhooma Aravamuthan:
Tell us about some of the things Gavin is really good at.

Lisa McHugh:
He loves music.

Gavin McHugh:
I can definitely-

Dr. Bhooma Aravamuthan:
Yeah, Gavin can tell us. Tell us about some of the things you're really good at, Gavin.

Gavin McHugh:
I'm really good at swimming. I like to swim in the summer. Speaking of summer, the summer is really close and I like to listen to music. If you would've seen the CDs that I have in my room, they're a bunch of them.

Dr. Bhooma Aravamuthan:
What's your favorite song right now?

Gavin McHugh:
Well, I like country. ELO, ever heard of that? Electric Light Orchestra. Ever heard of that?

Dr. Bhooma Aravamuthan:
I have heard of that. Okay, so you're an Electric Light Orchestra person.

Gavin McHugh:
Yep.

Dr. Bhooma Aravamuthan:
I love that.

Gavin McHugh:
Just got those CDs for Easter.

Dr. Bhooma Aravamuthan:
And you play piano too, so you're a good piano player.

Gavin McHugh:
Yep.

Dr. Bhooma Aravamuthan:
And great actor.

Gavin McHugh:
Thank you.

Dr. Bhooma Aravamuthan:
And your mom says you're cool. So there's that too.

Lisa McHugh:
You're good at memorizing. You know all the words to all the songs.

Gavin McHugh:
Yep.

Dr. Bhooma Aravamuthan:
Okay, thanks Gavin. Lisa, I'm wondering if you can tell us what advice would you give parents or caregivers of people with CP?

Lisa McHugh:
I would say network. I found a lot of support and new ideas and encouragement by networking, especially like Facebook groups, to see... When you have a small child, you don't know what it's going to be like when they're middle age, middle school, high school, when they're adults. And so by networking in a group like that, you could see future and expectations. I would also say a lot of people always are goal oriented, and I think with Gavin, we basically are always just looking for him to do his best. And his best is going to be different than other people, so we don't have unrealistic expectations, but if he can do something, we're going to have him do it.
We're never going to have him do long math on paper. He just can't organize it visually and it's never going to click. But he's great at literature and words, and so he loves to read and reads all day long. And so just to have a custom expectation according to what his abilities are and how he can best meet them and adapt with the special things that he needs to get by.

Dr. Bhooma Aravamuthan:
What do you feel are some misconceptions people have about CP? What are some things that people think about CP that aren't actually true?

Lisa McHugh:
I see a lot of young kids will look at Gavin and instead of speaking to him-

Gavin McHugh:
Oh, yeah. Yeah, okay. They'd be like, "Why is that kid walking with canes?"

Lisa McHugh:
Or "What's wrong with his legs?"

Gavin McHugh:
Or "What's wrong with my legs?"

Lisa McHugh:
Usually what happens is parents will be like, "Shh, that's rude," and usher the kids away. We always actually like opportunities to... If I see a child saying, "Mommy, what's wrong with his legs?" I'll be like, "Oh, you can ask him. Go ahead and ask him. He can talk to you." I think it's this thing when people don't know, they don't know what to say. I think people should feel able to approach and ask questions without worrying about saying the wrong thing when they have good intentions and they just want to learn and they want to share to just approach and ask.

Dr. Bhooma Aravamuthan:
I love that. I think you guys are doing a lot with everything you're sharing and doing interviews like this and being in the public eye with showing people what it's like to be a person with CP in real life. I think that's great. I think you're doing a lot-

Gavin McHugh:
Thank you.

Dr. Bhooma Aravamuthan:
... to show people what having CP really means. I guess. Lisa and Gavin, same questions to you. Are there other things that you really feel like it's important for people to know about CP or disability or Gavin?

Gavin McHugh:
I just want them to know that in order to get something that you want, you have to try hard.

Dr. Bhooma Aravamuthan:
Awesome. Anything else from you Lisa?

Lisa McHugh:
I think a lot of people often think that it's really sad or it's awful or this terrible thing, and we actually have a lot of fun with Gavin. We make a scene everywhere we go. We have a lot of kids, but we're also tripping and falling and spreading out and holding the door for an extra long period of time. We encounter a lot of people and our life is fun actually. We enjoy interacting with other people and we love when people are encouraging him or asking him questions. He gets to touch a lot of people. He touches a lot of people on his social media, but also in real life. I think we get to show people that he's cool and fun and cute and life is fun. We get to keep him forever.

Dr. Bhooma Aravamuthan:
Well, thanks for showing us how cool and cute and fun you are today, Gavin. I really appreciate you guys both joining us today.

Gavin McHugh:
Thank you.

Lisa McHugh:
Thank you.

Dr. Daniel Correa:
Can't get enough of the Brain and Life podcast? Keep the conversation going on social media when you follow @NeuroDrCorrea and @BrainandLifemag, or visit Brainandlife.org.
Well, that was a great discussion that you had with Gavin. Thank you so much, Bhooma, for sharing with us and connecting with us here as one of our guest hosts, and now the medical expert for this episode, Bhooma.

Dr. Bhooma Aravamuthan:
Thanks so much for having me. Excited to be here.

Dr. Daniel Correa:
As some of our listeners may remember, or make sure to go back and check some of our past episodes, we had Dr. Aravamuthan here with us as a medical expert on cerebral palsy in a past episode. We've had two previous episodes on this topic. One, an interview with RJ Mitty, and the other, an interview with Josh Blue. She is an assistant professor of neurology, a pediatric movement disorder specialist, and a neuroscientist who studies dystonia in cerebral palsy. She does this both in the lab and in working with her patients and the families that she helps support. She also does a lot of great work with the American Academy of Neurology in the areas of these conditions, other developmental conditions and that affect children living with different neurologic disorders and throughout our communities. It's great to have her here as an expert to help in discuss this topic.

Dr. Bhooma Aravamuthan:
Thanks so much, Daniel. Thanks for having me.

Dr. Daniel Correa:
We touched on what is cerebral palsy in our previous episodes with RJ Mitty and Josh Blue. But maybe to focus in on one of the things that came up in your discussion with Gavin, what is spastic diplegia?

Dr. Bhooma Aravamuthan:
Yeah, great question. Cerebral palsy comes in many, many different forms. It's a lifelong motor disability and it is the most common lifelong motor disability that there is, and it can manifest in many different ways. Spastic diplegia has two different parts of cerebral palsy mixed into that title, so what body parts are affected? What is the distribution of motor symptoms in this person? Diplegia means that both of the legs are affected, di, meaning two, so two legs. And spastic is a type of tone. It's a type of tightness that many people with cerebral palsy have. There are many different types of tightness that you can experience as a person with cerebral palsy. Dystonia is another one of them. Spasticity is the most common form. If you have spastic diplegia, you have a spastic type of tightness in both of your legs.

Dr. Daniel Correa:
There is the term diplegia in referring to both legs. Is it different when an individual has had an injury maybe when they were born or growing up where it affects just one arm and one leg even though that's two limbs?

Dr. Bhooma Aravamuthan:
Yeah, so the causes for the same type of distribution of motor symptoms and cerebral palsy can actually be the same. You can be born premature. That's a very common risk factor for cerebral palsy. The most common distribution you can have with that type of cause of cerebral palsy is diplegia where both of your legs are affected. You can also have another distribution of cerebral palsy called hemiplegia. That's one arm and one leg on the same side of the body being affected. You can get that from being born premature too. A more common cause of hemiplegia in people with cerebral palsy is having a stroke when you're born. So lots of overlap there.

Dr. Daniel Correa:
I think another key aspect of what you said and came out in your discussion was that it is a non-progressive condition. When you're explaining that to a family member, what does that really mean in what you're trying to translate to them and make sure that they're understanding where their child is now and what that means for their long-term expectations?

Dr. Bhooma Aravamuthan:
Yeah, that's actually a really tough question that the field is really debating quite a bit right now. Non-progressive means that the symptoms that you have shouldn't be getting significantly worse with time. You shouldn't be losing skills. Things you were able to do, you should still be able to do, and any sort of pattern of brain injury you have that would've led to you having cerebral palsy, that brain injury pattern shouldn't be getting worse over time either. What we'd also know is that symptoms of cerebral palsy can evolve over time. Spasticity for example, may look a certain way on one day and when you're not feeling that great, you may feel that your limbs are tighter, that your arms and legs are tighter. In kids, you're not losing skills. But as you get older, but there is kind of a sense that you're losing motor function. We have to talk about all of that when we talk about what non-progressive means.

Dr. Daniel Correa:
Wow, okay. So maybe lets sort of as a thought exercise take different situations in childhood or in the lifespan when you might be engaging with a family. Maybe you have a family, parent or another family member, there with a patient that you're seeing who is a young child, whether they're preschool age or early school age that is coming with cerebral palsy. Maybe it's something similar to Gavin's experience with spastic diplegia. What do you talk to them about the expectations for their early childhood development and as they transition into school?

Dr. Bhooma Aravamuthan:
If we're talking about a young child with spastic diplegia, you think about depending on the age, where they are in terms of their motor function. We do have assessments now that say that if based on the things that you're able to do at a certain age, these are the things that you can expect when you're five, when you're seven, when you're 12, when you're 18. We know that a child who's eight years old who is primarily using a wheelchair to get around for their mobility is likely going to need a wheelchair to get around for their mobility for the rest of their childhood and going on into adulthood. It's those sorts of discussions that we have, what are the things that your child is able to do now? What are the goals that you see for yourself as a young person with cerebral palsy that you as the family see for this person, this family member, and what does the data suggest is realistic? And what are ways that we can all grow together? How can we facilitate what your goals are?

Dr. Daniel Correa:
Now, I think probably a few parents' ears perked up when they said you have a chart that tells them what to expect when a teenager through adolescence. Let's think about that adolescent child or young adult. What do you expect? I mean, the body is exploding both in mind and size and everything is changing. What do you expect family members should be considering in supporting their child and young adult?

Dr. Bhooma Aravamuthan:
It obviously depends on the person, but things to think about are reproductive health as you're starting to hit adolescence. For someone who has cognitive disability, are you making sure that they're in a safe environment? Have you thought about, for people who are able to menstruate, what the menstruation management plan is going to be? For young people that are out in schools interacting regularly with their peers, have you talked to them about dating, about sexual health? These are all things that are really important to consider as our kids start getting older and families start thinking about adolescence. Thinking about college, thinking about post-elementary school, post-secondary school, what is the plan?
That can be college for some people, it can be day programs, it can be job placement. And also thinking about where are children going to find therapy services as they become adults. A lot of the things that insurance covers and a lot of providers that are very comfortable with treating young people with cerebral palsy, there aren't a lot of those as you hit adulthood. So planning for that is important too. Guardianship is something super important as well, so considering does the young person with cerebral palsy in your life need an appointed guardian? How do you pursue that? What sort of paperwork is necessary? These are all things we start thinking about as a young person with cerebral palsy hits adolescence.

Dr. Daniel Correa:
Wow. I'm hearing that there are some clear specific issues to growing up and aging and advancing and in development with cerebral palsy, but a lot of what you said is really almost a very broad inclusive perspective of not thinking of this young individual as being somehow limited from many of the other things that we think adolescents and children need throughout their development. It's really including them in the concept of where they're going for both activities, sports, dating, college, all of the typical next steps that many people think of.

Dr. Bhooma Aravamuthan:
Yeah, that's such a great point and I'm so grateful for you for pointing that out explicitly. People with cerebral palsy are people. Disabled people are people. We all have the same needs, the same desires, the same hopes for the future. A lot of my job as a physician, having the privilege to follow people along on this journey, is to facilitate my families and the young people with cerebral palsy I see to be able to reach the same goals. Often that's with helping with medication or surgery referrals or whatever, but it's also about figuring out how to optimize their environment, whether it's in the school, in the community, providing them resources with how to access different aspects of the school and the community so they can be people just like everybody else. I think that's such an important point.

Dr. Daniel Correa:
In our previous episodes and a little bit as you previously discussed and when we talked about what is cerebral palsy, we refer to it being a symptomatic condition from some other cause or injury or insult to the brain. I'm putting you into the corner here, but within adolescence and in that advancing childhood, are there some common medical issues that family members or children growing up with and living with cerebral palsy should be aware of that they may be at greater risk of?

Dr. Bhooma Aravamuthan:
That's a great question. A lot of thinking about medical management of cerebral palsy is about surveillance and making sure that we're being proactive about handling symptoms that may show up in the future, particularly around adolescence. It's really important to think about scoliosis screening and have we kept up with hip surveillance screening? So looking for things like hip dysplasia, things that can cause pain or arthritis later in life. Those are all really important things to have been surveilling for the whole time, but a lot of the manifestations of these conditions that will require more acute intervention or more immediate intervention happen around adolescence.
As people start to reach adulthood, adults with CP are more at risk for certain neurologic conditions than adults without CP. As people start hitting 16, 17, 18, start transitioning out of a children's hospital or my clinic, I do try to start counseling them on these other things that these other conditions that they need to be aware of, increased risk of stroke, increased risk of spinal cord injury in the neck, increased risk of new onset seizures. These are all things I want families to be aware of, not to scare them, but so that they can be self-advocates as they pursue adult care.

Dr. Daniel Correa:
And they're good things for people to keep in mind as they're starting to take a look at making that transition from you as their medical provider or from another pediatric neurologist to adult neurology and adult internal medicine and primary practice providers. They may be navigating people who are more or less comfortable with cerebral palsy or some of their childhood conditions.

Dr. Bhooma Aravamuthan:
I think the biggest thing I would say is that transition, it's not a discrete time point. It's not Monday, you're at the children's hospital, Tuesday, you're at the adult hospital. It takes a lot of time. What I've heard and experienced from a lot of our families is that at a children's hospital, multidisciplinary clinic, your care provider, your neurologist is kind of your care quarterback. They're helping figure out are there nutrition referrals that are needed? Is referral to ophthalmology needed? What about respiratory health, do we need a pulmonary referral?
We're kind of helping manage all of those things in the context of motor disability because all of these things mean if you can't breathe and you're not eating, you won't be able to achieve your motor function. Right? So we try and manage all of these things together. We try to coordinate all of these things. When families move to adult care, it tends to be that a provider is more discreetly focused. It's unusual to find an adult cerebral palsy multidisciplinary center where there's one provider acting as the care quarterback. So piecing together the medical team for an adult with CP can take a lot of time.
We really do try to start thinking about transition when kids are younger, so 15, 16 we start talking about it, start thinking about finding adult providers that are local for that family, thinking about what their needs would be so that when they're 19,20, they're ready. It can take a lot of time. So start early would be my advice there.

Dr. Daniel Correa:
That's a good point. You touched on it before. We talked about the actual explicit reality that most people need to be aware of, that living with cerebral palsy, living with a disability shouldn't necessarily limit you and your interaction with the community. Gavin himself actually talked about some of his own perspectives of the different terms that are used. He's made a rapid transition, mixing now his childhood with professional acting. How do you talk about addressing the stigma of living with cerebral palsy and some of its mobility challenges or symptoms with children in school or with them making transitions in schooling or into professional life like acting?

Dr. Bhooma Aravamuthan:
I think that's tough. That's also very dependent on the person and how they want to address it too. Gavin did a great job of explaining this. I think it's incredibly important to accept cerebral palsy or disability as a neutral term. It's not like, oh, oh, that person is so funny, but they're disabled. I mean that sort of but happens a lot, I think, and that sort of stigma, these microaggressions. There are macroaggressions too, but these microaggressions are internalized and I think people have the sense that these are bad things. It's bad to be disabled.
It's not. It is a part of who you are. You have a lifelong disability. As a disabled person, there is a disability identity and that shapes you and your interactions with the world just like my gender and my race and my ethnicity shape, my interaction with the world. I think it's very important for children to... I do try and share that with children from a very early age. I think often it's something that is more difficult to share with caregivers. I'm really grateful to Lisa, Gavin's mom, for really shepherding that message for him.
I think caregivers come and want their kid sometimes to be fixed, so to speak, think of thinking of these things as bad period. That can lead to a lot of when it is a lifelong disability and it's a part of who you are, thinking that a part of who you are is bad and that's why you have to come to the hospital. And we have to fix it. We have to get rid of it. That's difficult. That's I think, difficult for a lot of children to deal with. And so talking to caregivers about how things as simple as saying disabled is not bad.
It is okay. Saying your child has cerebral palsy is not bad. It is a neutral. I think those are discussions that have to happen over and over again. A lot of it is modeling, trying to use those words in clinic myself and then being explicit when statements are made in a clinic room to the contrary that no, that's not disability. Identity is identity. Disability is not a bad word. I think those are important things to say.

Dr. Daniel Correa:
I appreciate that aspect of really highlighting that this is just part of someone's identity. It gives them a unique perspective. Within the structure of our society, yes, sometimes these bring limitations and barriers, but that's because of the issues of our society and not necessarily that the disability or the condition is a negative or even some conditions as positive either way. I think we sometimes will see descriptions about someone... As you said, there's the but statement in qualification, but sometimes there is despite this heroism kind of placement and it's really that people thrive with.
One in a previous episode about cerebral palsy, we touched on some of the challenges that families and children may experience with bullying, but we talked about it more in the one-on-one and navigating that. A big place where some of these interactions occur nowadays, and Gavin touched on, is social media and our social life and interactions online. Across your patients, whether it's cerebral palsy or otherwise, how are you talking about social media use with the children you support and the families that you support also?

Dr. Bhooma Aravamuthan:
A lot of my families are very active on social media. I think it's a part of who we are now. I think that like anything in life, there are pros and cons. I think being very clear that when you're engaging on social media that you will get messages that are very encouraging and you'll get messages that are very discouraging and to, I think, be prepared for that. Now, the whole, "Don't let the haters get you down," sort of perspective, I think is tough to explain to any twelve-year-olds, whether they have cerebral palsy or not. I think preparing them by saying that all of this will be out there. It doesn't change who you are. You're still showing up every day is the same person. That's a message that I share with everybody regardless of whether they have a neurologic condition or not. I think the social media experience can be similar in that way, can be a shared experience in that way.

Dr. Daniel Correa:
Yeah, and just understanding that it is different than in-person face-to-face interaction. There's a different ability to both see and connect with another person's experience and emotions. Grade school and middle school were tough enough in our class sizes of 30 and school sizes of hundreds or maybe in bigger schools, thousands. But with social media, we're talking about engagement at huge exponential levels.

Dr. Bhooma Aravamuthan:
Yeah, massive levels. Yeah. I think in the context of disability, and you alluded to this earlier as well, there is this people with disabilities don't exist to inspire you. They don't exist to get your pity. They just exist. Period. When you think about sort of an Instagram presence or a visual presence, it can be easy to fall into either of those extremes, have people post things that say like, "Oh, poor you," or have people post things like, "I don't have an excuse. This disabled person can do this, so we should all be able to do this." I mean, disabled people that share information on social media are sharing their lives just like anybody else. So I think warning about those sorts of extremes in particular, particularly a large scale, are important.

Dr. Daniel Correa:
As we wrap up, and when you're talking with families who are just navigating all this process and through the different life stages, what are some of the types of resources that you refer them to that are available to people either online or maybe for them to seek out in their communities?

Dr. Bhooma Aravamuthan:
The Child Neurology Foundation in terms of transition to adult care has a lot of really great resources in terms of charting your life course, so to speak, of medical care, what's the information that your adult provider might need as we transition care to them? Locally for us in St. Louis, our special school district has a series of documents and worksheets called Charting the Life Course, where from a very early age, we start thinking about what is life going to look like 10, 15, 20 years from now? And so thinking about that can be really useful. There are various tools, again, through our local special district, thinking about what is a goal you want to achieve and what is the step-by-step way to get there.
All of these tools are wonderful. I do think that ultimately a lot of expertise comes from the cerebral palsy community, so actively seeking out spaces where you can interact with other families affected by cerebral palsy, where you can talk to adults with cerebral palsy. We're trying to create a lot of those spaces here in St. Louis through our clinic. But those spaces also exist online on Facebook and through chat groups. The power of social media has advantages there as well. That community is so strong and full of expertise. So accessing all of these sources can be helpful.

Dr. Daniel Correa:
Those are great ideas and references, and hopefully we'll get some of those notes and links to some of the resources that you would recommend and we'll include those in today's show notes for the episode. Bhooma, you've also been involved within the Child Neurology Society and the American Academy of Neurology, thinking about improving the quality of care and the different services that there are for the community living with cerebral palsy. We talked about how there are multiple different reasons why in our society there can be barriers to people with their cerebral palsy or even the care needs that they have.
What are some of the resources you wish we all had and that you're hoping to advocate for? If you're given the check, what are you asking for?

Dr. Bhooma Aravamuthan:
At the base level, it's to cover therapy services. It's for insurance coverage of therapy services through adulthood. There's a therapy model in adult care that's rehabilitative, meaning you have some sort of injury and you have therapy covered to recover from that injury, which is inherently discriminatory against people with lifelong disabilities because that injury was sustained when they're a baby and their disability is lifelong. That rehabilitative model is intentionally exclusionary and needs to be fixed. At the base level, it would be for coverage and provision of therapy services for people with cerebral palsy across the lifespan.
At a broader level, it would be honestly for adult practitioners to understand that people with lifelong disabilities are their lane. Particularly for adult neurologists in training, seek out opportunities to work with children with disabilities, not just acutely, not just when they come in with that one seizure, but in the outpatient clinic. See how these children live their lives over time and understand that it's your job to take care of them when they become adults. Then again, in that sort of philosophy shift, we talked earlier about the Child Neurology Foundation transition information, and it's a wonderful resource, but it's focused on child neurologists, which is just one part of the equation.
Transition in some ways is a false distinction. A person with disabilities with a lifelong disability deserves lifelong care. As that expertise for what they need shifts, it should not just be on the child neurologist to figure out how to package all this medical data with a bow on it and hand it over to an adult practitioner. We need people to meet us and to care. I don't know how much money that would take. I don't know if it's a money thing, but I do think there needs to be a shift in philosophy.

Dr. Daniel Correa:
A shift in practice. Yes, I agree. I think it's something that we need to shift in our thought process and our development and education for each other. But some of these are issues for our listeners. If you care about cerebral palsy, if you're impacted by it in your family, look to the Child Neurology Society, the American Academy of Neurology, and other patient and community organizations that support people living with cerebral palsy, because many of these organizations are advocating for these kinds of changes. There may be ways for you to get involved at your local government level or at federal levels to really push and ask for more of these changes and more resources for the community.
Bhooma, I truly appreciate you taking the time to guest host with us this week to interview Gavin and everything that you do to really see these individuals and their families where they are with their conditions, help them thrive with their cerebral palsy and not to be limited by the ideas of their symptoms and or disability.

Dr. Bhooma Aravamuthan:
Thank you so much, Daniel. It was an honor to be on here.

Dr. Daniel Correa:
Thank you again for joining us today on the Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org. Don't forget about Brain and Life en Espanol.

Dr. Katy Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to Blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Daniel Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

Dr. Katy Peters:
And Dr. Katy Peters, joining you from Durham North Carolina and online @KatyPetersMDPhD.

Dr. Daniel Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Katy Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Daniel Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find The Brain and Life Podcast. See you next week.

Gavin McHugh is Building an Acting Career and a Community with Cerebral Palsy

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