Cerebral Palsy, Models of Disability and Inclusion
Cerebral palsy is more than a condition of the brain which contributes to one’s lived experiences. It cannot be isolated and viewed only through the medical model of disability or its predecessor, known as the social model. Doing so would erase key components of my life, our lives — the lives of the 212,000 children living with CP in the United States. It would be analyzing them in an incomplete manner and ignoring that CP’s a way of life, impacting every breath one takes, move one makes and experience one creates.
It must be viewed through both. My life — and so many others’ — are influenced by CP in a variety of interconnecting ways. CP is, and likely never will be, a monolith, and each person has different experiences rooted in the medical and social models of disability.
Viewing CP: The Medical Perspective
A neurological condition disrupting normal motor function, CP effects the communication between the brain and muscles. “Cerebral” means having to do with the brain, and “palsy” means weakness or problems with using the muscles. CP impacts a person’s ability to control their muscles and maintain balance and posture, but its impacts on individuals vary. While all people with CP have trouble with movement, many also have related conditions like intellectual disabilities, seizures, problems with vision, hearing or speech, changes in the spine and potentially scoliosis, and joint problems, like contractures.
Occurring when there is abnormal brain development or damage to the developing brain, cerebral palsy can happen before, during or after birth, though it most commonly happens before or during birth. Such cases are known as congnetial CP, but there are circumstances where CP happens after birth. Known as acquired CP, after-birth cases usually are caused by an infection or head injury. In many cases, though, the exact cause of CP is unknown. From a broader perspective, it can result from a specific problem, like a lack of oxygen to the brain, a generic condition, an infection, bleeding in the brain, severe jaundice or a head injury.
In developed countries, there has been a centuries-long effort to diagnose CP as early as possible, but diagnosis often occurs late, from 12 to 24 months in high-income countries and even as late as 5 years in underdeveloped nations. Early diagnoses can be critical because they could address potential harm to the developing brain. But there are multiple barriers impacting clinicians’ confidence in diagnosing CP early, including few biomarkers and a lack of curative treatments. Furthermore, difficulty with determining how infants fit in with the definition of CP because limitations may be less obvious and the natural variations of motor control in infants and children complicate the diagnosis process.
There are four different types of CP
About 80 percent of people with CP have spastic CP, causing increased muscle tone and stiff muscles, which often leads to awkward movements. Most people with spastic CP experience spastic diplegia, which is defined by muscle stiffness impacting the legs more than the arms — or not affecting the arms at all. Those with spastic diplegia may struggle walking because of tight hip and leg muscles. Their legs may pull together, turn inward, and cross at the knees. Another subtype is spastic hemiplegia, or spastic hemiparesis, where the CP only impacts only one side of somebody’s body. Typically, spastic hemiparesis effects one’s arm more than their leg.
Another type is dyskinetic CP, which includes athetoid, choreoathetoid, and dystonic cerebral palsies. People with dyskentic CP have trouble controlling the movement of their hands, feet, arms, and legs, making it difficult to sit and walk. Such movements are uncontrollable and can be slow and writhing or jerky and rapid. In some cases, dystonic CP impacts the face and tongue, which causes people to have trouble sucking, swallowing, and talking. Dystonic CP is often defined by a muscle tone that varies from too tight to too loose, constantly changing, from day-to-day and even multiple times throughout the day.
Some people with CP have ataxic CP, where they have problems with balance and coordination. This is often characterized by unsteady walking, struggles with quick movements or movements that require lots of control, like writing. People with ataxic CP sometimes have a hard time controlling their own arms and hands while reaching for something.
Mixed CP is a combination of multiple types. The most common type of mixed CP is spastic-dyskinetic
In order to find what type of CP a child has, parents and doctors should observe the motor type, topography, and motor severity in their child. This is done through MRIs and other scans.
Viewing CP: The Social Context
It is vital that children with cerebral palsy are included with their nondisabled peers from a young age. Studies have shown that the socialization of children with cerebral palsy has life-changing benefits; for instance, those who develop social skills often learn from one another, forming interpersonal relationships. Educators and parents must push children with CP to foster positive social behavior, which may help because they are often excluded by their peers.
Besides the exclusion from social events caused by ableism — whether structural or implicit — children with cerebral palsy may face obstacles while interacting with others. These include:
Lack of control of the tongue and mouth muscles impacting speech
Difficulty effectively and productively communicating thoughts or being understood by others
Hearing loss or vision problems
Delayed emotional or physical development
Attention or behavioral struggles
To support their child’s social development, parents can expose them to different communication and social development styles. This has been proven to help deconstruct false preconceived notions about children impacted by birth injury, like that CP can be prevented, its effects always can be notified immediately after birth and birth injuries are the same as birth defects and result from genetic issues. And through positive social development, children and their families can help to reduce the chances of others excluding them.
When supporting a child with CP, parents and other adults should encourage communication and patience in learning how to interact with others. But like their peers without CP, the children constantly observe how their parents react to social cues and will emulate their actions. This makes it particularly important for parents to support social development by being understanding.
Specific actions parents or educators can take to support communication for children with cerebral palsy include:
Developing the child’s interests, whether sports, music or art, and get them involved in activities that reflect their interests
Being patient and taking time to understand the child, using communication methods that feel most comfortable, like communication boards or hand gestures. This will help fill the gaps they encounter in speech
Using apps to help the child develop communication and language comprehension skills
Placing the child in social therapy to help them break down communication barriers through group activities
Viewing CP: My Perspective
Growing up, my parents never defined me by my cerebral palsy and followed much of the social perspective without totally abandoning the medical model. Throughout my childhood, they always communicated with doctors, therapists, and other specialists, but then questioned what they were being told. But I think it is especially difficult as a parent because those doctors, therapists, and specialists offer advice based on their training and experience, but those things don’t equate to the experience of parenting a disabled child, just like how parents of disabled children cannot understand what those children experience, no matter how much they try.
It has never been about trying to fix me, but the focus has always been on finding ways to make things work. When I was young, I didn’t ever use a wheelchair for anything but riding the school bus, and I used a walker in school and my house. And I participated in a baseball league for children with disabilities throughout elementary school. I was in classes with my nondisabled peers, who hadn’t been socialilzed enough to treat me any different.
But then in middle school, everything seemed to change for me. I began wanting to be involved in what my friends from school were doing, leading me to join the local Little League Baseball organization. It was different because it was really the first time that I had a conversation with my parents directly related to my disability. They told me that I could be on a team but I couldn’t play as I did previously. So I joined the league and kept stats for my team, went to practices and sat in the dugout with my teammates.
And then a year later, in sixth grade and heading into my second Little League season, I began having growing pains and needed to use my wheelchair full-time. But my parents and I would schedule doctor’s appointments, concerned that there was something wrong, beyond growing pains. We concluded that it was indeed growing pains, and I went on to reinvent myself through my participation on sports teams. In junior high, I joined and kept statistics for the seventh and eighth grade baseball teams and then things really took off in high school. In ninth grade, I realized I wanted to be a journalist and joined the junior varsity baseball team, so I would write game recaps. And by my junior and senior years, I had moved on to lacrosse instead of baseball and was part of the football and boys basketball teams as well.
Without my involvement in sports, I wouldn’t have had the same school experience. All of my friends were from the different sports teams, and it’s hard to imagine having the social life that I did through academics alone.
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