Cerebral palsy (CP) is a highly misunderstood medical condition. CP is the most common motor disability in childhood, and children with this disorder and their families need support. Here are the top 15 things to know about CP.
1. Cerebral palsy is a neurological disorder.
CP refers to a group of non-progressive disorders affecting movement, balance and posture. The condition stems from deformities in the developing brain or from brain damage sustained before birth, during birth, or within the first three years of life. In CP, the signals from the brain to the body are lost or redirected, resulting in the difficulties with movement people with CP face.
2. There are a variety of types of cerebral palsy.
CP manifests itself in a variety of ways. The three primary types of CP are spastic cerebral palsy (characterized by muscle stiffness in at least one limb), athetoid cerebral palsy (characterized by involuntary movement) and ataxic cerebral palsy (characterized by difficulty with coordinated movement). However, CP can also present itself as a mixture of these types.
Spastic CP is further categorized by the limbs affected by CP. Spastic CP can primarily or exclusively affect the legs (spastic diplegia), one side of the body (spastic hemiplegia) or can affect all four limbs (spastic quadriplegia). In rare cases, spastic cerebral palsy can affect one limb (spastic monoplegia) or three limbs (spastic triplegia).
3. Cerebral palsy can be mild, moderate or severe.
CP has a wide range of severities. Some people with CP may not be visibly disabled or may appear to be mildly uncoordinated, while others have very little control of their bodily movements and may have other neurological symptoms, such as vision or hearing impairments, seizures, intellectual disability or difficulties with speech. Many people with a CP lie between these extremes.
Depending on the severity of their condition and their needs, people with CP may use leg braces, canes, crutches, walkers or wheelchairs — but not all need assistive mobility devices.
4. Treatment for CP includes Botox injections, orthopedic procedures and therapies.
Botox is no longer just for Hollywood’s top celebrities; it is currently used as an injection to relieve muscle stiffness in people with CP. In addition, many people with CP undergo tendon lengthenings and other orthopaedic procedures, such as serial casting, in order to maintain movement. To increase functioning on a day-to-day basis, those living with CP may attend physical therapy and occupational therapy to develop motor skills and increase independence, as well as speech therapy to improve speech and communication skills.
5. Cerebral palsy is not an intellectual disability.
Although it originates neurologically, CP itself is not an intellectual disability — though it can be present alongside intellectual disability. Many people living with CP have average or above-average intelligence — just as in those without CP. Therefore, it is of the utmost importance to presume competence when interacting with people affected by CP.
6. Many people with CP experience physical pain.
CP can cause a significant amount of wear and tear on the muscles, particularly over time. Pain may arise out of the abnormal muscle movements present in CP. 25 percent of children and teenagers with cerebral palsy experience pain, while up to 84 percent of adults with cerebral palsy experience physical pain.
7. People with CP have a variety of identity preferences — and these should be respected.
People with CP generally refer to their disability identity using either person-first or identity-first language. Person-first language places the focus on the person, rather than on the disability (“I have cerebral palsy” or “I have a disability.”) Identity-first language places the focus on the disability as an integral part of identity (“I am disabled.”) It is important for the able-bodied population to respect these identity preferences and not change or “correct” self-identifying language.
8. Cerebral palsy is often misrepresented by the media.
CP is a highly misunderstood medical condition, largely due to the media’s descriptions of the condition. It is often incorrectly characterized as a “disease,” presumed to be genetic, or reported as a progressive condition. In addition, those with CP are frequently described as “victims” or “sufferers,” though the vast majority of people with CP live fulfilling, happy lives.
9. There is still a heavy social stigma surrounding CP.
Due to the pervasive misconceptions surrounding CP, some people with the condition may be reluctant to disclose their disability or share their experiences with others out of fear of being misunderstood or stereotyped. They may also attempt to conceal certain symptoms. Some people with less visible CP go to great lengths to hide the condition. Understanding CP can reduce the stigma and stereotypes surrounding the condition.
10. People with CP are not required to educate the able-bodied population.
Oftentimes, those living with visible CP receive personal questions in public regarding “what happened” to them, why they use particular assistive devices or how they accomplish certain tasks. Although some people with CP are willing to answer politely-worded questions, it is not their responsibility to educate others about the condition, and they have the right to decline to answer intrusive questions. It is crucial to understand that no one is entitled to be educated in a public setting or to receive a stranger’s medical history.
11. People with CP can be independent.
From a young age, many people with CP learn adaptive skills to maximize their independence later in life. Although some people with cerebral require high levels of assistance, many people with CP can drive or transport themselves independently, live independently, and support themselves financially.
12. Those living with CP can experience the same life milestones as the able-bodied population.
People with CP attend and graduate from college and graduate school, establish fulfilling careers in a wide variety of fields, date, marry, own homes, start families and care for their children — just like the able-bodied population.
13. People with CP enjoy a wide variety of activities.
CP does not prevent those who have it from enjoying a variety of activities. People with CP are writers, performers, hikers, techies, crafters and collectors. They play sports, compete on debate teams, volunteer their time and hold leadership positions in their schools and communities.
14. People living with CP are not “heroic” or “inspirational” for living their lives.
People with CP are frequently deemed “heroic” or “inspirational” for engaging in everyday tasks or for simply existing. Although those who use such terms are generally well-meaning, their words evoke pity, as they are based on the misguided assumption that living with CP is unfortunate and tragic. On the contrary, people with CP live full lives, and many take pride in their CP and the unique perspective it provides. Those with CP, therefore, are neither heroic nor inspirational — unless they do something that truly merits being placed on a pedestal.
15. People with CP are capable.
Each person with CP has a variety of skills and talents. Some are athletic, musical or creative. Others are scientifically-minded, entrepreneurial, linguistically talented, or emotionally intelligent. No matter what skills or talents they may possess, all people with CP are capable and have immense potential to succeed in life.
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Written by: Kelly Douglas Originally appeared on: The Mighty Republished with permission