March is Cerebral Palsy Awareness Month
Cerebral Palsy is a very common condition from birth. To promote better understanding of this disorder, March has been designated as Cerebral Palsy Awareness Month by the United Cerebral Palsy Association. The following gives some basics as to what this condition is about.
Definition of Cerebral Palsy
Cerebral Palsy is a generic umbrella medical term for any non-progressive neuromuscular disorder which starts at birth and affects what is called “muscle tone”—in other words, how tight or loose the muscles are. In more basic terms, the brain is continually giving incorrect signals to the muscles causing abnormal stiffness. Cerebral indicates that it is a condition of the mind, most specifically with the motor cortex near the top of the brain. Palsy indicates the visible symptom, in that muscle tone is affected. It is the most common form of brain injury from birth in the United States and around the world, affecting almost 1 million Americans and approximately 17 million people worldwide. According to the United Cerebral Palsy Association (UCPA), it affects one out of approximately every 323 live births. It is not gender specific. Chances are that you may know someone who either has this condition, or know someone who has a relative or knows someone else with Cerebral Palsy.
Symptoms and Types
Although Cerebral Palsy primarily affects the extremities—the arms and legs, it is not limited to that. Motor control is the primary area in which the body is affected, but many people with the condition also have difficulties with speech and swallowing. It is also common to have strabismus, or “lazy eye” syndrome, although this is less common. One-third of people with C.P. cannot walk; many others need mobility aids, such as a cane or a walker. Others whose cases are very mild may have little or no mobility issues, but in most cases some evidence of the condition is apparent.
The most common known causes of Cerebral Palsy are premature birth; oxygen deprivation during or just after birth; multiple births; infant jaundice and exposure to a virus such as rubella during pregnancy. Cerebral Palsy is always caused by some external event before, during, or just after pregnancy. It is not hereditary. The research does not yet indicate if there is a link between COVID-19 and Cerebral Palsy during pregnancy, but it is important to keep in mind that research is still ongoing.
There are three main types of Cerebral Palsy: spastic, athetoid and ataxia. Spastic is the most common form of the condition, resulting in legs and arms that are stiff or rigid and sometimes immobile. Nearly 75% of people with Cerebral Palsy have this type. The next most frequent type is athetoid Cerebral Palsy, which causes the muscles to be simultaneously atypically loose and tight and the brain cannot coordinate between the two extremes, causing perpetual shaking. Christy Brown, the subject of the Academy-Award winning movie, My Left Foot, had athetoid Cerebral Palsy. He referred to it in the poem “A Song for My Body” as being part of a living perpetual motion machine, which is unfortunately all too accurate. Ataxia is a form of C.P that affects balance, but is fortunately extremely rare.
Cerebral Palsy can range from very mild to very severe. Some people who have it can pass as able-bodied. John Quinn in the book Someone like Me, depicted hiding his disability to be able to serve in the armed forces, for example. The lack of mobility is by far the most dominant trait, but not necessarily the only one.
Public Awareness and Notable Names
Cerebral Palsy was first made publicly aware with the book Karen (1952) by Marie Killilea, a mother whose daughter had been born with C.P. It became a best seller and was followed up by With Love from Karen (1963). The Killileas went on to found the United Cerebral Palsy Association (UCPA) and promote civil rights for people with disabilities, being one of the first organizations of its kind. (Karen herself died recently on October 30, 2020 at the age of 80). During the recent United Way scandal, UCPA was voted one of the best organizations for putting the money back to serving their population. While UCPA itself is not without some controversy, it still does help to advance the cause of people with disabilities. These efforts would lead to subsequent advances, such as the Education for all Handicapped Children Act of 1973, which opened up “mainstreaming” opportunities in the public school system. This would be followed up with the much later landmark legislation with the Americans with Disabilities Act of 1990, furthering accessibility and access to public venues for more people with physical disabilities.
The condition receded from the public eye until the 1989 movie My Left Foot (loosely based on the books My Left Foot and Down All the Days by Irish author Christy Brown) starring Daniel Day-Lewis, who won an Academy Award for the role. Christopher Nolan, another Irish author with C.P., won several awards for his writing with Under the Eye of the Clock and Dam Burst of Dreams a few years before the My Left Foot movie was released.
The Roman Emperor Claudius, as depicted in the British TV Series I, Claudius from Robert Graves’ novel, is also commonly thought by historians to have had Cerebral Palsy.
Future and Understanding
Cerebral Palsy cannot be cured at present and probably never will be. However, many new technologies and innovative therapies can help people with Cerebral Palsy to lead more independent lives. Most people with the condition lead normal lives and have a normal lifespan. Many hold jobs, raise families and are active in their community. Many more would like to, if they had the opportunity to do so.
People with Cerebral Palsy may act and move a bit differently than most of us. But those living with this condition are still people and have the same needs and wants as anyone else. Sometimes their mannerisms and body language are not what people expect, and it can be difficult to understand them without knowing what Cerebral Palsy is. That’s why Cerebral Palsy Awareness month is so important; with awareness comes greater integration and hope for a more inclusive society in the future.