Empowering People with Cerebral Palsy

By Condeluci, Al | The Journal of Rehabilitation, April-June 1989 | Go to article overview

Empowering People with Cerebral Palsy


Condeluci, Al, The Journal of Rehabilitation


Empowering People with Cerebral Palsy

On a cold winter day in 1948, in New York City, a frustrated physician had a brainstorm. For months he was struggling to learn more about a complex condition called cerebral palsy. In his study he needed more information; he needed to see more people with this condition, but he didn't know which way to turn. Contacts with colleagues had revealed some cases, but he needed a broader perspective. Then came the idea--to run an ad in the New York Times and call for an open public meeting.

The results were overwhelming. Over 300 people: frustrated families, people with cerebral palsy and related health professionals showed up in response to the ad. Not only did this gathering offer the physician a fresh start toward his challenge, but it was the birth night of United Cerebral Palsy (UCP).

In the ensuing years, UCP grew and developed around three important agendas: to educate the public, to focus on prevention and to advocate for services. Today, UCP stands as the single most prominent organization focused on the phenomena of cerebral palsy in the nation. UCP has over 180 affiliates around the country, all dedicated to direct services. In addition, a strong governmental activities office promotes government awareness and supportive public policy. As aggressive as this effort has been, unfortunately many people are still unclear about this disabling condition. So, what is cerebral palsy, its causes, its manifestations?

First, it is important to know that cerebral palsy is not a disease. It is not something you can catch, nor is it something that is progressive in nature. Rather, cerebral palsy is a group of conditions. "Cerebral palsy" is a composite term that is merely descriptive. That is, the "cerebral" portion of the term refers to the region of the brain that has been damaged. "Palsy" merely means shaky or uncontrolled motion. United Cerebral Palsy defines cerebral palsy as a group of conditions--not a disease -- characterized by nerve and muscle dysfunction. Sometimes it shows itself in awkwardness of gait, loss of manual dexterity or other motor problems. Other associated challenges may be seizure, vision, hearing, speech and learning difficulties, or psychological and behavior problems.

Thus, cerebral palsy initiates with damage to an immature brain. Although a genetic connection cannot be totally ruled out, most incidences of cerebral palsy result from a lack of oxygen to the developing brain and is thought not to be hereditary. This anoxia can be caused by blood incompatibility, umbilical cord problems, excessive prenatal smoking or drinking, or untreated jaundice. Further, infants or children can acquire cerebral palsy through accidents or child abuse. Although the incidence of congenital cerebral palsy has been on the decrease, the increasing numbers of accidents and abuse hold steady the number of new cases at 7,000 per year.

Once damage occurs in the brain that results in some physical manifestations, cerebral palsy will be diagnosed. Given the fact that there may be other associated challenges that are linked to the brain damage, many of those 7,000 new cases may have multiple disabling challenges. Along with the given physical issues, many people with cerebral palsy can also have seizure disorders, learning disabilities, mental health issues and others previously described.

The 700,000 people in the U.S. with cerebral palsy labels are not sick or diseased. They are children, men and women who have a variety of challenges in their lives brought out by an affected physical or cognitive situation. Additionally, the intensity of these situations can be wide ranging and different. Like anything else, no two people with cerebral palsy are alike.

Traditional methods of intervention for people with cerebral palsy have initiated with medical supports. Physical therapy, occupational therapy, speech therapy, medications and some surgical procedures all have a viable place in early intervention. …

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