How Paula Carozzo is Redefining Disability and Advocating for Her Community

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa. This is the Brain & Life podcast.
Our guest today, Paula Carozzo, had a post-surgical complication after tonsillectomy that affected her breathing and led to decreased oxygen to her brain and injuries with long-lasting effects. She tells us about how when she grew up, she and her parents didn't even know necessarily whether or not she was going to walk, at times, having even difficulties with her speech, and how the years of recovery and rehab and therapy that was needed to take not only to walk and to speak, but then in the future go to school and become a model and a featured ambassador and disability accessibility advocate for clothing and athletic brands. She's been an inspiration to many people, and it's an inspiring story to hear from her.
Stay tuned throughout the episode also to catch our discussion with medical expert, Dr. Andres Jimenez-Gomez. He's a pediatric neurologist and an expert in childhood neurodevelopment at Joe DiMaggio's Children's Hospital in Miami. In the coming weeks, we'll be having a discussion with Samantha Irby and her experience of being a caregiver for her mother who was diagnosed with MS. She was a child and a caregiver for her mother, and talks about that in many of her life experiences with her own medical conditions. Also, make sure you don't miss our episode with mixed media artists, Laura Bundesen. She tells us about her experience with vestibular neuronitis and how she's incorporated some of her own experience and other neurologic conditions into her artwork.
Welcome back to the Brain & Life podcast. Today, I'm overjoyed to be joined by Paula Carozzo. She's a disability and neurodiversity advocate working towards greater awareness and inclusivity in all our society, helping us all adjust from ideas of pathology and disability so that we can embrace everyone and their perspectives. She started this effort increasing awareness on social media, and has continued in community advocacy and working with companies and fashion brands such as Hoka to integrate inclusivity across all abilities. Thank you so much, Paula, for being here today.

Paula Carozzo:
Thank you. I am honored and very, very excited to get inclusive today.

Dr. Daniel Correa:
So you grew up in Venezuela. Do you remember your childhood and time with your family before your injury?

Paula Carozzo:
I remember a lot. The only periods I don't really remember was when I got sick and was admitted into the hospital, but prior to that, I had a very, very happy childhood. In your Latin homes, for some reason, your primos lived next to you and then your grandma lives in the house in front, so there's always this generosity when it comes to family. I actually acquired my disability when I was around five. I went into a tonsillectomy to remove my tonsils, and in that surgery, there was brain damage. There was brain damage and it was never really known what kind of brain damage it was. The hospital didn't want to release all the paperwork or didn't want to fully commit to saying what had happened, but basically, it was a non-traumatic brain injury due to severe levels of anesthesia in the oxygen or severe levels of oxygen, or something triggered in the vocal cords in the tonsillectomy to create the brain damage.
About two weeks after, I started having some very wild symptoms that were confused for the common cold. I started coming down with virus flu-like symptoms. I lost appetite. I became very weak, but then the symptoms expanded over to losing my train of thought, losing my neuromuscular coordination. My knees started crashing against each other when I would try to get up and walk, and then one night, I lost my voice. And that's when my parents were like, there's obviously something neurological going on here that's deeper than a common cold, so that's when they took me into the hospital to get checked.

Dr. Daniel Correa:
So it's very quickly afterwards, you were having a lot of problems and challenges, but even then, they were just saying, "Oh, you're just recovering from the surgery." You guys didn't even have a sense that there was a brain injury?

Paula Carozzo:
Not one bit because I walked out fine. I walked out being who I was, playful child, just wanting to go home to hang out with her cousins. But it was shortly after that, about a week and a half or two, where I started acting up, and then that's where there are many conclusions that it could have been a stroke. Stroke symptoms come in, come out. It could have been a non-traumatic brain injury that kind of developed throughout time after the surgery. There are so many hypotheses opened up on my medical file.

Dr. Daniel Correa:
So you've lived with so many questions of not even really knowing what was or how was the brain injury that occurred, but just having to move forward.

Paula Carozzo:
I believe so. You think it has to be that. You always have to carry on this grit with you to just take life with you and see where you go.

Dr. Daniel Correa:
So early on when you guys were still living in Venezuela and after all this, how was your experience living there with the challenges you were having different from when you moved to Miami?

Paula Carozzo:
When I was still living in Venezuela, there was no doctor that was able to properly diagnose me, because there were just so many short run and conclusions to my diagnosis that there was no doctor that fully wanted to take on my case because it was just so perplexed. Also, when I was sent out to physical therapy centers without a diagnosis, there was just so much that they could do. The therapy centers themselves were also very inaccessible. There were no ramps in the entrances. It was just stairs. People were still very perplexed on how to communicate with a disabled person's parents. There was still this stigma, this taboo, all of it, which led my parents to come over to Miami to hang out for a bit to find a cure.
And then when we got here, everything was, "Oh, la piscina, la playa. The bathing suit, the pool, the beach." And then we get to this orthopedics office and this neurologist's office, and they're like, "There's no cure here. Your daughter has a disability. Her MRIs result in a non-traumatic brain injury, but part of her basal ganglia is dead." So part of it was just white matter in the MRI, dead, and they're like, "There's no cure here."
And then I think it was there when they were like, okay, Miami might not be a vacation. Miami might have to be this home now. Because I remember them thinking, and this was just all me when I was six years old, but since a child, I always had this capacity to observe people and really keying into their nonverbal communication and their body language to see how they were feeling. Mind you, I still didn't have a voice, so I could only communicate with my nonverbal features. Blinking was a yes, and then rotating my eyes from left to right was a no.
And my parents, they told them that their daughter was never probably going to be able to go back to who she was. They told them that I would never walk or talk again, and I think my parents objected to that conclusion because I think it was a big part of their confidence, and their ability to oversee what doctors told them, they somehow injected that to me, and I think that is a result of where I am today. I think I've put very little effort into who I became. I think it was all them.

Dr. Daniel Correa:
You were blessed by having parents that just poured their love into you and you were able to move forward and rehab with that?

Paula Carozzo:
Yeah.

Dr. Daniel Correa:
Wow. It sounded like you started from such a point of having so many challenges and limitations, at a point when your body and brain are very much still developing. What types of therapies did you do as you were growing up that were essential to getting you to where you are today?

Paula Carozzo:
So a lot of what started to happen was in Venezuela, when they were able to see that I had a non-traumatic brain injury that was taking over and basically killing all of my brain, they had to induce me into a coma. They induced me into a coma to try to stop this brain damage from expanding, but the brain damage expanded. So this was all at the initial period when I was hospitalized for the first time, after I had lost my voice. After that, I was awoken and they saw that the damage had persisted because I was completely quadriplegic. And then after that, I was let go from the hospital because they no longer wanted to be held liable for my case.

Dr. Daniel Correa:
So once you came to Miami, when you started getting therapy, whether it was physical therapy or other therapies, what types of therapies became essential for your development over time?

Paula Carozzo:
So I actually ended up being diagnosed with cerebral palsy, spastic diplegia, because as anybody with an non-traumatic brain injury, you have certain parts of your brain which don't function the same anymore, which therefore don't send the same signals when you try to move physically in your body. So I was walking in tiptoes with no dorsiflexion in my feet at all, so I could not put my feet straight on the ground flat. So I was automatically equipped with AFOs. They look like these Star War super cool shoes, that I hated back in the day, but now I look back and I love them because I look super cool wearing them. And the AFO was all to put the foot flat back on the ground to stabilize my hips, because obviously, if we're starting to walk on tiptoes, your calves are on fire. You start having less quad strengths because it's all being focused on your hamstrings, which later on led to me having extremely tight hamstrings where I needed to get multiple surgeries, including Achilles lengthenings, because those caps were always on fire.
I was in a wheelchair when I got to the US. As I mentioned, I left Venezuela as a quadriplegic, so a lot of it was they would just lay me on this mat and it was very aggressive therapy. I was doing these super rigorous core routines because I had lost all my core strengths. I couldn't walk, couldn't do much. And then I remember when I was somewhat able to regain some strength, I was put in this walker. No choice. It was just like, "You're not sitting anymore. No choice. Get on this walker." So we get on the walker, and of course I was falling left and right. I was advised by my orthopedic to go in for an Achilles lengthening, because I was still on tiptoe. No matter the AFOs, the spasticity was just living basically in my calf muscles.

Dr. Daniel Correa:
So the AFOs are those ankle foot braces. They're somewhat similar to the cast that people might see if someone twists an ankle, but it's even a little bit more limiting and really forces your foot into that position. You mentioned the Achilles lengthening surgery, and that's a surgery that's done most of the time by an orthopedic surgeon and helps lengthen that tendon that connects that big calf muscle to the back of your ankle. Sometimes when people have this kind of walking limitations or spasticity as you're describing, it's one of the only things that can help people continue to progress and get stronger. But there's been a lot through your life and development you've dealt with both personally and mentally. What have you done to help you progress and embrace who you are?

Paula Carozzo:
I think a lot of that has been just accepting. When you have this disability, you don't only have taboo from the world. I had taboo from my parents, so for a long time, it's like, "Paula? Disability? What? No, she's not sick. She doesn't have anything." And there came a point where I didn't know if they were trying to make me feel better or I didn't know if they weren't really accepting that I had a disability.
So I had this very tense conversation with my dad one day where he told me, "You're only limping because you want to limp, not because you walk with a limp." And I had to get myself together, and I'm like, "I'm working very hard to accept my disability, but I think you have to accept it as well, because I think we've been battling this thing for 20 years and the resistance we've created is not letting us accept it." I was like, "This is who I am. Love me, take me, leave me, whatever you want to do, but this thing might not leave my body, and I'd rather deal with it peacefully than keep creating resistance around it."

Dr. Daniel Correa:
Yeah, it sounds like it's an important balance, because so much of that dedication and resistance that your parents had early on contributed to really helping you push forward and getting better. But you have to realize, you're coping with and managing with an injury, and sometimes a lot of that injury and those effects may not go away. So disability, it's a part of all of our humanity's diversity and something nearly everyone will encounter in their lifetime, whether it's through someone they know, a loved one, or maybe even themselves. Almost all of us have grown up in a society that's very focused on a certain set of abilities, and many of us may not be as aware of what it is for someone to live in the world around us with some limitations or different abilities. What are some key terms that you work towards increasing awareness that people should be aware of to help understand better about living with different abilities?

Paula Carozzo:
I think we have to remove the words handicap, retarded, dysfunctional, crazy from our vocabulary when referring to disabilities, because all of this comes down to the fact that these words already have such a negative connotation to them. And us as advocates, the only way how we really redefine it is by eradicating this from our vocabulary, because if you come into terms with these words, they already have such a negative connotation that it's going to be more difficult to try to redefine those, which they've existed for longer, and try to come up with new words. So I alongside the community, we've come up with new terminology like people with disabilities, disabled people, and also letting people know that you can use the word disabled and disability.
I think it's important as well to identify first person and third person, and by first person, I mean that some people are okay with being called disabled person, disabled people, because they don't want their disability to be detached from them because it is a part of them. Other people would rather be called people with disabilities because they fought so hard and so long for that person first aspect of their life. So they'd rather be referred to a human with a disability, human first rather than their disability coming first. It's just something of preference and how that specific community member would rather be referred to. But I always say follow disability social groups, follow activists, actors, models with disabilities. Google them, see what they're talking about. See what's trending, because I feel that that's really the only way how you will even know what's considered important, what is not, and what is trending in the community.

Dr. Daniel Correa:
So it's just like we all have sometimes slightly different ways that we prefer someone pronounce our name.

Paula Carozzo:
Yeah, exactly.

Dr. Daniel Correa:
It's important that we just listen to each other and respond and interact, and use the terms that people feel comfortable and they feel like actually refer to them. What's next for you in this advocacy work towards supporting differently abled people in the neurodiverse community?

Paula Carozzo:
Continuing some work in the fashion industry, maybe going into create my own adaptive fashion line, but making it very, very functional and stylish for people with disabilities. But I definitely want to go into more owning my own brand for the future, and then of course, working more with the community to really tackle in societal community problems that everybody's going through daily.

Dr. Daniel Correa:
I appreciate you sharing your voice with us and with our listeners here today. Thank you so much, Paula.

Paula Carozzo:
Thank you so much for having me.

Dr. Daniel Correa:
Is this episode leaving you wanting more? Get the latest tips on healthy living and management for more than 250 neurologic conditions by visiting brainandlife.org, where you can learn more about neurology every day, powered by trusted neurologists.
That was such a great discussion with Paula. I'm so glad that she opened up about her course with her condition. Now, I'm here and joined by Dr. Andres Jimenez-Gomez. He's a pediatric neurologist and an expert in childhood neurodevelopment at Joe DiMaggio's Children's Hospital in the Miami area. When he first meets children and their families, he regularly gets down to their eye level to try and better connect with their perspective and understand them and their needs. Today, we're hoping he can help us connect with and understand Paula's experience and journey of recovery after her childhood brain injury. He's also passionate about global health, especially in Latin America, and he'll be joining us for this episode's companion Spanish language release. Thank you so much, Andres, for joining us.

Dr. Andres Jimenez-Gomez:
Thank you, Daniel.

Dr. Daniel Correa:
So I wanted to recap a little bit for our listeners. Paula, while in Venezuela with her family, at age five had a postoperative complication after tonsillectomy that resulted in what we think was a hypoxic brain injury. She was sent home initially to recover for one to two weeks, and then it became clear something else was wrong. She lost appetite, felt weak and an inability to walk, and then got readmitted to the hospital. And then all through that time, it just all became much more clear that she was having an injury to her brain. Later on, they hypothesized that it may have been at some point in the operation or afterwards, she had an inability to get enough oxygen to her brain. Or there was also a consideration as to whether or not she had inflammation or a metabolic injury to her brain, but thankfully, as far as Paula and her family knows, nothing else has ever occurred and she hasn't had other brain injuries.
Andreas, how similar is this to some of the stories that you've seen with other children that come to you when they're getting evaluated for possible cerebral palsy or other injuries to the brain?

Dr. Andres Jimenez-Gomez:
I think Paula's story is quite exceptional. It definitely fits in more of the exception than the rule or the norm for what we tend to see in children and young adults who come to our practice with a diagnosis or a preexisting diagnosis of cerebral palsy or CP. I think most of us think of CP as the consequence of, as you mentioned, an injury where there's not enough oxygen coming to the brain, but typically happening somewhere around the early neonatal, so that means early newborn period, or at some point throughout the pregnancy, more usually later on in pregnancy or around the time of delivery or something along those lines. Because that's a specifically vulnerable period, and often, we know that brain tissue is susceptible to a certain degree of injury, and that brain is typically more commonly injured.
Now, in the, let's say, outside of what we call the newborn intensive care units or the NICUs, what we tend to see unfortunately is a lot of these events where oxygen is not coming to the brain in a sufficient volume because of drownings. So drownings remain one of the major causes of what we call morbidity, so disability and other conditions, and mortality in children up to about four years of age. And what's key about some of these changes with lack of oxygen coming up to the brain is that it becomes an issue of an injury that affects a developing brain. So it's a little bit different than the injury in the brain of an adult, and it certainly is a very severe injury but one that affects a brain that hasn't, let's say, gained a lot of its functions and gained a lot of its understanding of how to go about the world.
Now, again, Paula's case is a little bit exceptional in that she tends to be a little bit on the older end, so it's a bit more developed brain with a lot more abilities, and certainly, we don't understand very well the course of what happened, and it seems like a very unfortunate situation and consequence to which we don't exactly know a cause. Oftentimes, we know a lot from the newborn period and whatnot, but we don't know further on in time.

Dr. Daniel Correa:
And I think one thing that many of the parents out there might be wondering is how common or how likely is it there are complications like this after a tonsillectomy?

Dr. Andres Jimenez-Gomez:
Again, I think that this would be exceptionally rare during a tonsillectomy. I know that we have had a look at things and different factors, and cases in which we've had issues related to postoperative, so after surgery kind of care in terms of pain management. A few years ago, there was a big movement in increasing the prescription of certain types of medications that could decrease respiratory rate and that could decrease certain functions, especially after a tonsillectomy, but this is certainly rare as it comes and I don't think it should sway or dissuade anybody from pursuing appropriate medical care when their child may be in need of having a tonsillectomy or an adenoidectomy or something that is relatively routine during childhood.

Dr. Daniel Correa:
So we're going to use two different terms, cerebral palsy and hypoxic brain injury. What's the difference of these terms in children?

Dr. Andres Jimenez-Gomez:
They're not necessarily interchangeable but one is connected to the other. Cerebral palsy has been a term that's been adopted into the medical lingo for many, many decades now to give a name to a collection of different changes in movement that people affected may develop after there has been a form of brain injury. So what we know about cerebral palsy, specifically as a term, is that it doesn't tell us a whole lot other than there are changes in the way movement goes. So as much as movement goes from what we call voluntary movement, so how when you move your arms, your legs, as much as things go when it comes to things like the resting tone that our muscles have in our body. That's why we sit up straight and we stay in a certain position, as well as to the movements and the finesse or the accuracy of our movements. That's why we may reach out to grab something and not drop a cup of water or not splash around, or not have our head shake whenever we're looking at something intently.
That much is only related to movement and to motor events, and we know that that's what the main, main issue that we see with cerebral palsy is there are a number of other things and a lot more depth to cerebral palsy because of the patterns of injury from that traumatic brain injury or from that, whether it's acquired, that means happened after birth, something happened, or congenital injury, something happened before birth or right around the time of birth.
Now, where the hypoxic ischemic injury or hypoxic ischemic encephalopathy comes in is that the most frequent cause, we think probably closer to two thirds or more, 90% of cases in which we see children who eventually develop CP, there has been an event where there was this hypoxic ischemic encephalopathy. To kind of tease out that jargon there, we're talking about when we say hypoxic is there is a lack of oxygen coming to the brain, and then the ischemic component tells us about a lack of blood flow coming to the brain. And then the encephalopathy component says, hey, there's an effect on the brain in and of itself. So it's this collection of features that leads to an impact in the brain.
Now, when you don't have blood coming up to the brain, when you don't have sufficient oxygen coming up to the brain, that brain tissue suffers. That brain tissue unfortunately suffers in some areas to the extent of having a loss of that tissue, and unfortunately, the brain tissue itself is irreplaceable. So you develop some scarring, for lack of a better word, scarring in some of its functions and scarring in some of its structure that leads eventually to those changes in how folks are able to move or walk or reach out with their hands or speak or do anything that involves muscle function in their body.

Dr. Daniel Correa:
And early on in Paula's story, when they saw that many more problems were starting to develop, the extent of weakness and speech issues, later on, she started to develop issues where her knees would hit each other when she'd try to get up and stand up. You mentioned the development of spasticity. Does this fit with the kind of pattern that we see with children who develop spasticity in their legs?

Dr. Andres Jimenez-Gomez:
Certainly so. I think the most common type of what we call cerebral palsy, cerebral palsy in itself is just that kind of broader term but we talk about spastic cerebral palsy being the more common one. So that means some of that stiffness in the muscles, and that spasticity tends to be what we call diplegic. In children with milder injuries or later injuries, it tends to be mostly affecting both lower extremities. So I think one sign that many, many of us would recognize in the clinic very easily is what we call scissoring. Certain muscles that bring the thighs together tend to become more spastic, and that's what turns the knees inwards and makes the knees lock in together, and makes for such a difficult ability to walk. And then when you lift children up, obviously not an adult, but when you lift children up by their armpits, you're able to see those legs scissoring in or shaped in the way of a scissor.

Dr. Daniel Correa:
And for our listeners, I encourage you also if you're interested in more stories and perspectives with cerebral palsy, we did past episodes in 2022 with actor RJ Mitte and comedian Josh Blue, who both share their experiences living with cerebral palsy, and with the medical experts in those episodes, we discuss some more specifics about cerebral palsy. Andres, each child's injury and needs are unique, but what are some of the supportive medical therapies and care that you explore in helping them with their cerebral palsy?

Dr. Andres Jimenez-Gomez:
I would say the first and foremost is we have evolved as a science in terms of preventing outcomes such as cerebral palsy, particularly in the newborn period. Neonatal intensive care and neonatal neurocritical care or critical care in the brain has much evolved in ways that we're finding avenues to prevent the consequences of the hypoxic injury. But unfortunately, of course, we still have a fairly significant rate and the children who are affected are definitely affected across the lifespan, and the implications for management is we need to do things that encompass the lifespan. I think that that has been a very strong point of advocacy from many organizations, namely even WHO, the World Health Organization, in terms of defining what we call the classification of function in children and adults with CP and other neurodevelopmental disabilities, to understand, where is this cosmos of need, where are all of the aspects in which we could help an individual thrive in a society that is not pre-designed for them to thrive?
So from the medical perspective, for example, we tend to have a multidisciplinary approach. The main approach is obviously to deal with those motor or muscle movement issues from the perspective of what we call maximizing function. That means if you're able to move your hands to an extent and reach out with your hands or ambulate, that means walk around, or if you need an additional aid to mobility and walking around, then we need to figure out a way through either therapies, for example, physical therapy, occupational therapy, to help you maximize the movement. We need to find ways to help prevent further disability in those movements, so we use sometimes what we call orthotics. So we see sometimes folks, for example, with specific braces or that wear specific splints that run down the back of their legs and into their foot that help keep those feet in position, so that they no longer stepping out to the point that they're immobile in the future, and we're facilitating therapy through that.
Sometimes we have to employ medications from the medical perspective, so to help decrease some of that very high tone the muscles develop, and we obviously consult with other experts, sometimes the neurosurgery groups, sometimes orthopedic surgeons, because that change in the muscle function leads to changes sometimes in skeletal function. That means there may be some twisting of the back like scoliosis. There may be trouble where the hips are dislocated, and we need to prevent pain and disability. We need to prevent issues that are going to affect future mobility to the maximal extent possible.
From my perspective, as a neurodevelopmental disabilities physician, I worry a lot about cognitive outcomes. That means what is the functional potential from the intelligence perspective or from the cognitive abilities perspective. Because what is an unfortunate association oftentimes is folks in the community see children and individuals with CP and they think of somebody who has an intellectual disability just because of their physical disabilities. Even though folks with CP have a higher rate of intellectual disability, it isn't a universal finding, and oftentimes it is the ability to track a way to test for those abilities and to find where the level of communication and ability to demonstrate those abilities comes in from our perspective. We test, we find out, where are these children's abilities? Whether it's for what we call verbal cognition, so verbal abilities. How can they communicate and how can they communicate their knowledge, and how can we communicate knowledge and new skills to them?
As well as nonverbal abilities. So we have to make sure that their sensory organs, hearing, seeing, tactiles or touching, everything else is in order so that we can provide appropriate therapies adjusted to their needs or prevent further disability. Do they need glasses? Do they need hearing aids? Is there any other support that we could provide them to maximize function?
From that same perspective, we need to work collaboratively with schools, work collaboratively with the environments that folks work in, because oftentimes, there are ways to modify the school environment and to modify the work environment. There are laws in the United States at the very least supporting that, so that we are able to provide adequate accommodations in what comes to education and employment to allow the person to fulfill their potential maximally.
And obviously we work to prevent other disability and other complications, and that is the work of many, many people. It really takes a village to understand, recognize. And certainly, as I mentioned at first, prevention is really becoming a big issue, especially in the newborn population.

Dr. Daniel Correa:
I think as you highlighted there and in Paula's own story, it really becomes clear, it is a multidisciplinary or multimodal team and a village, like you said, to support this and the child throughout their lifetime. It's not a single set of interventions at one time, and there's a lot of maintenance over time. Now, I wanted to also get to another topic that Paula brings up in her story, and I think it's important for us to have some perspective on. During her course, when they weren't really sure exactly what brain injury was going on and if she was getting worse, they actually induced her into a coma. For the families and parents of children with this kind of brain injury, the rehabilitation courses you've mentioned is a lifetime. What are some of the essential things that those parents, and you try to help them understand early on in the course?

Dr. Andres Jimenez-Gomez:
I think the essential two or three things that we need to understand is we want the child to be a child. We want the child's life to be a life that is not all about illness and sickness, but also a life that is about fulfillment and a life that is about prosperity in terms of their own emotional wellbeing. Most children with CP don't have severe intellectual disabilities. They are kids who want to enjoy and play, and some of them are able to participate in many things, so they deserve the chance and the opportunity to be members of the society that they live in as much as possible and enjoy their life as much as possible.
The second thing I work with parents in understanding is we need to try and maximize function and limit disability, and the avenue to do that is make sure that we are supporting children in terms of their muscle tone and in terms of what specific splints or what specific braces they may need. Because oftentimes, folks are a little bit weary of using all the technological resources and even all the medications, because they say, "You know what? I don't think that the medication is going to help," or they're worried about the side effects of the medications and whatnot. But these are interventions that we don't take lightly ourselves and we want to provide because we think there truly is a benefit that far exceeds the risks associated with any of these medications.
And then the last thing is we have to acknowledge that many children here have excellent abilities and we are undermining those abilities, and we really need to identify where their abilities are, to include things like an assessment by an eye doctor, an appropriate assessment of their hearing. Because it's not enough to say, "Well, I think he hears or she hears because they turn to sound." It's really understanding, okay, well, what is our range of hearing? What are we doing? How else can we help and do we need glasses? It's not the same to just look over and fixate eyes with someone else and to understand and be able to read, for example. If a child has the potential to read, we wouldn't be hindering it in a child who has mobility that is unimpaired. Why would we be hindering it in someone whose main, main difficulty may just be movement related and not necessarily intelligence or cognitive or sensory.

Dr. Daniel Correa:
Well, thank you, Andres, for taking the time to help us understand some more about cerebral palsy and to speak towards Paula's own experience.

Dr. Andres Jimenez-Gomez:
My pleasure, Daniel. Thank you for the invitation.

Dr. Daniel Correa:
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How Paula Carozzo is Redefining Disability and Advocating for Her Community

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