WHAT ARE THE RIGHT WORDS TO USE WHEN REFERRING TO CHILDREN WITH CEREBRAL PALSY?

Cerebral palsy is the term used to describe the motor impairment resulting from brain damage in the young child regardless of the cause of the damage or its effect on the child. Impairment is the correct term to use to define a deviation from normal, such as not being able to make a muscle move or not being able to control an unwanted movement. Disability is the term used to define a restriction in the ability to perform a normal activity of daily living which someone of the same age is able to perform. For example, a three year old child who is not able to walk has a disability because normal three year old can walk independently. Handicap is the term used to describe a child or adult who, because of the disability, is unable to achieve the normal role in society commensurate with his age and socio-cultural milieu. As an example, a sixteen-year- old who is unable to prepare his own meal or care for his own toileting or hygiene needs is handicapped. On the other hand, a sixteen-year- old who can walk only with the assistance of crutches but who attends a regular school and is fully independent in activities of daily living is disabled but not handicapped. All disabled people are impaired, and all handicapped people are disabled, but a person can be impaired and not necessarily be disabled, and a person can be disabled without being handicapped. In the past there has been a disturbing lack of awareness and sensitivity, both among the general public and in literature, with respect to the words used when people with disabilities are discussed. But an increasing amount of attention is being paid to such language in our society along with issues f education, employment, and public access for disabled individuals. Certainly, the use of obviously pejorative expressions has always been inappropriate, and the formerly accepted practice of referring individuals by their disability ("the epileptic," "the spastic," "the retarded child") is no longer acceptable. While it may take years for our language to catch up with our changing views, the current acceptable terminology stresses the individual person and then mentions the disability that person has, therefore, we refer to a girl with spastic diplegia or a boy with mental retardation. Clearly, this language acknowledges that there is much more to this individual than his or her disability. Other terms that have recently come into use represent an even more enlightened view. For example, the child who is mentally challenged, rather than the child who is mentally retarded. In this book, we have chosen to use language that reflects the appropriate current societal goal of employing respectful terminology and that also reflects our concern with presenting information in a way that can be understood by the general reader. We fully realize that there may be newer, even

better terms to use, but we will not use them when there is a significant risk of introducing confusion into our discussion.