Paralympian Nick Mayhugh uses social media to debunk cerebral palsy myths

Cerebral palsy (CP)—the most common lifelong disability—is also one of the least understood disabilities.

There are 18 million people worldwide who live with cerebral palsy, including a million in the U.S., according to the U.S. nonprofit Cerebral Palsy Alliance Research Foundation (CPARF), a partner of World Cerebral Palsy Day.

Cerebral palsy is caused by abnormal brain development or damage to parts of the brain that control motor function. The disorder affects a person’s ability to control their muscles.

The U.S. Centers for Disease Control and Prevention (CDC) says: “CP is typically diagnosed during the first or second year after birth. If a child’s symptoms are mild, it is sometimes difficult to make a diagnosis until the child is a few years older.”

Such was the case for Nick Mayhugh, the track and field athlete, and four-time Paralympic gold and silver medalist.

Mayhugh has a mild form of cerebral palsy that wasn’t officially diagnosed until he was a teenager, he revealed in a recent viral TikTok video in which he addressed several questions about his condition.

Mayhugh said he noticed the symptoms around his condition very early on in life but “hid them from virtually everybody,” because he “didn’t want to be treated any different” and “looked at as someone with a disability.”

The 26-year-old said: “It wasn’t until I was 14 that I had a seizure and I was rushed to the hospital and they actually found the dead spot [in his brain] in an MRI for the very first time.”

The majority of the people that ask about his condition “just genuinely want to know [more about the condition] because they’re curious and because they can’t see it and that’s the biggest thing that’s wrong with society.”

Referring to a screenshot of the definition of cerebral palsy found via a search in Google shown in the video, alongside an image of a child in a wheelchair, he said: “My biggest problem with that is the picture. Because people see that and look at me and say ‘Hey, you’re not in a wheelchair, so you’re not disabled. You don’t have CP, you’re faking it.'”

The video pans to a scan image of Mayhugh’s brain, which shows a “golf ball-sized black hole” on the lower left part of the brain, which he said is known as a “dead spot—that’s the part of my brain that never really developed,” he said.

Mayhugh, who was told he would never play soccer again due to his CP, went on to play Division 1 soccer at university, won several Paralympic gold medals, and broke two world records in a day (for the men’s T37 100 meter race at the 2020 Tokyo Paralympics).

The Paralympian is now passionate about raising awareness for CP.

“Just because you can’t see the disability, it doesn’t mean they don’t have one. Education is power. So ask questions, be open and maybe you’ll learn something,” he concluded in the viral TikTok video.

The Symptoms of Cerebral Palsy, and Is There a Cure?

The exact symptoms of CP vary according to the individual, but all people with CP have problems with movement and posture. Many people with CP may also have related conditions, such as vision, hearing or speech problems or issues with the spine or joints, explains the CDC.

Jocelyn Cohen, CPARF’s Vice President of Communications and Engagement, who is an adult with cerebral palsy, told Newsweek that CP is a diverse condition that’s classified in several different ways, including the number of limbs it affects and how visible it is to the outside world.

Cohen said: “Some with CP have monoplegia, which means only one limb is affected. Some 40 percent of people with CP worldwide have hemiplegia, which affects one side of their body. It’s most noticeable in someone’s limbs, but it can also affect their facial expressions. Some people with less involved diplegia, which affects both legs, may also not be visibly disabled to strangers.”

The type of CP a person has is determined by the location of the brain injury and “there are also some people who have CP that’s not apparent on a brain scan,” she said.

Nanette Mellor, the chief executive officer of The Brain Charity in the U.K., told Newsweek that since cerebral palsy can impact any area of the brain, it can affect not only the way you walk or talk, “but absolutely anything about who we are and how we manage our lives in the world.”

She said the symptoms of cerebral palsy that tend to be “more well-known in society” are those affect mobility, causing physical disabilities, and those affect speech. But some symptoms can be hidden, such as those affecting swallowing and vision or causing learning disabilities, the CEO said.

The CDC says: “There is no cure for CP, but treatment can improve the lives of those who have the condition. It is important to begin a treatment program as early as possible.”

The Biggest Misconceptions About Cerebral Palsy

It Only Affects Kids

Cohen said one of the biggest misconceptions about CP is that it only affects children. But in reality, “most of the 18 million people in the world who have it are adults.”

All People with CP Require a Wheelchair

Mellor said one of the most common misconceptions is that having CP means “you must be a wheelchair user or have a physical, visible disability.”

She said these misconceptions are born out of “stereotypes represented in popular culture and more widely in society,” which often show the same types of recognizable images of people with disabilities, such as the wheelchair symbol on public toilets and disabled parking bays.

However, there are “huge numbers of people” who have “invisible disabilities” which aren’t recognised or supported properly, the CEO said.

Cohen added: “Visibility is situational, too. CP that’s otherwise noticeable can be temporarily invisible in certain situations.”

For example, if a person with CP is sitting at a restaurant or on the subway, someone might not realize they have a disability. A wheelchair user’s CP condition could go unnoticed if they were sitting at a table or were on a video call that only showed the top portion of their body.

Everyone With CP Has the Same Experience

Cohen said another big conception is that every person with CP has the same experience, and can accomplish the same things.

“But if you know the story of one person with CP, you know one story.

“Cerebral palsy cuts across every possible demographic and someone’s personal experience with CP is shaped by many factors, including access to medical care, understanding the healthcare system, personal feelings about cerebral palsy and disability, and the societal stigma surrounding disability as a whole,” Cohen said.

The Invisible Challenges of Living with Cerebral Palsy

Cohen said those who have CP can encounter “so many invisible challenges,” such as obtaining employment, navigating the healthcare system and “dealing with societal expectations around what people should and shouldn’t be able to do.”

Prejudice and Discrimination

Mellor said: “We frequently see people with invisible disabilities not receiving the welfare benefits they deserve. We also often hear of discrimination and misconceptions around slurred speech which can be a symptom of cerebral palsy, and people living with the condition being mistaken for being drunk.”

She said people with invisible disabilities who may “appear able bodied” often face “prejudice, questions and anger around things like parking in disabled spaces or using disabled toilets day in, day out and that should not be happening.”

Employment

Mellor said employment can be “particularly challenging” for those living with cerebral palsy. Many of their clients are “extremely capable in the workplace” but may struggle with one particular element of their job due to their disability.

However, “currently, because not all disabilities are recognized and taken into account within the workplace, the employer may discriminate and look to move that person out of the organization rather than sitting down with them, working out what their needs are and making reasonable adjustments.”

She said employers can receive training to help understand their legal obligations and how best to support “neurodiversity and neurological conditions within the workplace.”

Cycle of Inaccessibility

Cohen said the “cycle of inaccessibility is the biggest hurdle” for those living with CP.

“Simply put, if the world is inaccessible, then people with CP and other disabilities can’t easily participate — whether that’s working in an office, going to necessary appointments, or having dinner with friends.

“And when disabled people can’t participate, we’re not seen in the community. If we’re not seen, then people don’t know we exist. They don’t feel the need to change the environment, and the cycle continues,” Cohen warned.

Mellor added it’s important to raise awareness of all neurological conditions and invisible disabilities. “If we perceive any type of difficulty, we should be thinking about what the individual might be dealing with, rather than making other assumptions.”

While there have been “positive changes in this area” in regards to mental health, we “still need to get to the stage where before we make a judgment on a person’s behavior, we consider neurological conditions and neurodiversity first,” she said.