Empowering people with cerebral palsy.

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. It should be understood, however, that since cerebral palsy is not a medical disease but a condition to be managed, these therapies are designed to increase function. Thus, rather than treatment, functional supports are designed to enhance abilities, not to reverse the disorder. This is an important feature. Since most early emphasis comes from a medical model, it can perpetuate a sick role and dependency status. This medical model can have a powerful influence in both how people with cerebral palsy are treated and in how they perceive themselves. That is, when people are served out of a medical model they are the recipients of treatment. The influence is that they must be cared for and must yield to experts who know better.

Although medical interventions are relevant in the childhood years, once therapies and medical services have had their effect, it is important to offer service and supports for people with cerebral palsy from an empowerment model. In this approach the person with cerebral palsy is viewed not as someone to be treated, but as a person in need of functional supports. Further, it promotes the management of these services by the individuals themselves.

Perhaps the best way to understand an empowerment model is to compare it to the medical model. It is imperative that this consumer-driven empowerment model be given at least equal priority to any medical model approach. In spite of complex situations, people with cerebral palsy can and should be integrated and empowered within their families and communities.

The concept of community integration and the empowerment model have their roots in social valorization, right to choose and risk, individualization and consumer control. These philosophies recognize that the present norms in society devalue people with disabilities and tend to keep them in second class citizen roles.

Concepts like social role valorization reframe the experiences, services and supports for people with disabilities so that they are done in the most typical of settings. Rather than create separate group homes or workshops that are specially designed for people with cerebral palsy, these philosophies suggest that human services offer residential or vocational supports in normal, regular neighborhoods and job settings. They say loudly that separate (or special) programs, no matter now nicely done, are never equal. Further, offering programs for people with cerebral palsy in a segregated or isolated setting only fosters ignorance and misunderstanding in the community.

This is not to suggest that people with cerebral palsy do not need supports. Rather, it reframes how and where supports should be offered. Additionally, it stresses that the persons with cerebral palsy manage and control their own situations. The best practices today in human services are proving that even the most challenged persons can and do successfully manage their own situations. At times people may need a gentle hand, but even in these cases the supported individual can remain empowered in the process.

In fact, the greatest challenge that faces many persons who have been labeled as cerebral palsied is not their physical, cognitive, or behavioral situations. These hurdles can often be addressed by early treatment, maintenance or compensatory efforts. The real challenge for not just persons with cerebral palsy, but most people with severe disabilities, is attitudinal barriers and social discrimination. Perpetual myths harbored by the lay person can often create enormous challenges to community acceptance and integration.

Consequently, as we look to learn more about cerebral palsy in an effort to better serve people with this condition, we would do well not to over-emphasize unique nuances of this disability, but to stress abilities and similarities to the real world. The more people with cerebral palsy have the opportunity to be in the mainstream and in control of their lives, the easier and more effective the special needs management will be.

Services to people with disabilities are entering a new era. Fueled by public laws such as Right to Education legislation, people with cerebral palsy are indeed entering the mainstream. These individuals and their families will no longer stand for a two tiered system where people with disabilities are served in their own worlds.

Certainly, rehabilitation professionals need to understand the unique aspects of disabilities such as cerebral palsy, but we also must bridge the gap from the medical model to an empowerment model. We are learning that when people with cerebral palsy are given the opportunity to be in control of their situation, good things happen. People want to belong and be a part of their community. An empowerment approach can make this happen.

For more information on cerebral palsy, feel free to contact the United Cerebral Palsy Association, Seven Penn Plaza, Suite 804, New York, NY 10016, 1-800-USA-1UCP. For those interested in community integration and empowerment, you can learn more by contacting the Center on Human Policy, Syracuse University, 724 Comstock Avenue, Syracuse, NY 13244-4230, [phone].