Dignity and Respect
Written by Sandra L. Nelson
I wrote this paper for a college course that I took called "Disabled in America." The paper is centered on the life of my son, Zachary, and the interactions, reactions and prejudices he had to face by people in his life. I have provided links for two books and my reactions to those books that support what I have written. You may find it beneficial to read the reaction papers as well.
The purpose of this paper is to discuss how people with disabilities are portrayed in our everyday lives. Making All the Difference: Inclusion, Exclusion, and American Law (Minow, 1990) and Person to Person: A Guide for Professionals Working with People with Disabilities (Gething, 1997) will be considered in how it relates to a disabled child presently in the "system." This paper will explain how this child with a disability interacts with his micro and macrosystems. The explanation will include the prejudices and understandings this child faces in everyday life as compared and contrasted to the above readings.
His name is Zachary. Zachary is three and a half years old and is non-verbal. He communicates with the world around him through sign language. Zachary has a rare neurological speech disorder called verbal apraxia. Verbal apraxia is the signals from the brain to the mouth are transmitted incorrectly. An example would be if your brain was the XYZ Cable Company and your mouth was the television. The XYZ Cable Company is sending the correct signal to your television. The television is working fine; however, it is not receiving the correct signal to see what is on the screen. The problem is with the descrambler between XYZ Cable Company and the television.
Zachary was connected with the Early Intervention Program when he was 20 months old. Following an intake evaluation, Zachary began speech therapy consisting of two 45-minute sessions per week. After six months of no progress, his mother advocated to obtain another opinion in order to receive appropriate therapy. As Minow suggested in her book, the "system" needed a "label" to provide Zachary the necessary therapy to address his specific disorder. The attachment of labels to people with disabilities perpetuates negative associations and stereotypes (235).
In Person to Person, Gething describes in detail the effects on the family of a person with a disability. Zachary's parents accepted his disability following the stages of bereavement that Gething discusses (8). It was not until the final stage of acceptance that Zachary's parents realized that it would be a long road to intelligible speech. It was at this time that Zachary's mother taught herself sign language. She diligently practiced so she could teach Zachary and the other members of the family. The communication barrier was now broken with his immediate family. However, Zachary still was unable to communicate with other members of his microsystem.
Zachary's school experience is a prime example of negative perceptions and its effects on people with disabilities. Zachary began nursery school when he was three years old. His mother attended as his interpreter. Zachary's mother discussed his disability with the nursery school teacher and staff. It was obvious on the first day of school that the teacher and staff were uncomfortable with how to approach Zachary. Gething describes the factors underlying attitudes in her book. These factors include fear of the unknown, threat to security, fear of becoming disabled, guilt, or aversion to difficulty (28). Zachary's mother assumed there was a fear of the unknown. Consequently, his mother assured the teacher and staff that Zachary understands everything; he just communicates with his hands. She facilitated the interaction between the teacher and Zachary in an attempt to provide a comfortable atmosphere.
After two weeks of nursery school, Zachary was not "included" in the daily routine of the school environment. The teacher and staff did not ask him questions or assign him chores like the other children. When Zachary would sign what he wanted to say, the teacher and staff did not acknowledge him. His mother would have to interrupt the teacher to indicate that Zachary wanted to share an idea. The other children in the class would stop and stare. This situation made Zachary different and, consequently, the other children did not interact with Zachary.
The negative perceptions of the teacher and staff will influence the children in the class for the rest of their lives. As Minow stated, "the fear of emphasizing differences, whether by acknowledge or nonacknowledgement, arises as long as difference carries stigma and precludes equality" (74). The nonacknowledgement of Zachary's disability made him different, just as the acknowledgment of his disability would have made him different as well. One way to approach this dilemma is the teacher acknowledging Zachary's disability and teaching the other children some sign language to communicate with him. This would have positively affected the unstated assumptions of difference among the classmates, in addition to helping Zachary feel like he belongs in society.
The nursery school setting exposed Zachary to negative perceptions as well. His difference caused exclusion. The impact of inclusion in this particular setting had an adverse affect on Zachary's behavior. He became easily frustrated and uncooperative. This behavior only reinforced Zachary's non-acceptance into the school environment. This is an excellent example of a self-fulfilling prophecy working at its best. Since this setting was not conducive for Zachary's learning, his mother chose to pull him out of nursery school. However, this yields the question: inclusion or exclusion?
The Individuals with Disabilities Education Act was enacted to include children with disabilities in mainstream classrooms (Minow, 36). A dilemma arises when the teacher and classmates continue to possess the unstated assumptions of difference. The concept of inclusion can positively affect perceptions and desensitize teachers and classmates in identifying a child with a disability as "abnormal." However, until the unstated assumptions of normal versus abnormal are changed, inclusion may have adverse affects on the self-esteem of the child with the disability.
Zachary's four siblings face teasing by their classmates due to Zachary's disability. Their classmates perceive Zachary as being dumb because he is non-verbal. In turn, their classmates will say words like, "Your brother is dumb, so you must be dumb, too." Gething discusses attitudes and beliefs and the "'insider-outsider' concept developed by Wright (1975a and b, 1980, 1993)" (26). This concept indicates that outsiders with no one-on-one experience with people with disabilities are likely to attack characteristics that have nothing to do with the disability itself (27). Zachary's siblings having to experience the teasing by classmates supports the theory that anything that is "different" from the norm is perceived negatively.
When Zachary interacts with people in his macrosystem, he is facing a multitude of perceptions. Zachary sitting on Santa Claus's lap is an example. Zachary signed what he wanted for Christmas. To Zachary and his mother's amazement, Santa knew some sign. Zachary responded with delight and enthusiasm. While getting a cup of hot chocolate following his visit with Santa, Zachary was signing to his mother about his visit with Santa. The woman working the stand asked if Zachary was deaf. His mother explained that Zachary is using sign language while he learns to speak. The woman proceeded to "gossip down the lane" with the other women working the stand and pointing at Zachary. Zachary immediately stopped signing and became extremely sad, as if he had an innate understanding that they were talking about him.
In one setting, Zachary had to face a variety of reactions to his disability. The mixed messages can be confusing for a child. As Minow states, "We look at people we do not know and think they are different from us in important ways. We forget that even if they are 'different,' in ways that matter to them too, they also have a view and experience of reality, and ours is as different from theirs as theirs is from ours" (378). It is difficult to imagine people in society realizing that they are just as different as everyone else is. The characteristics that describe anyone are different. Red hair or blonde hair, one hand or two hands, brown eyes or blue eyes, hearing or deaf are all characteristics of people. People need to categorize these characteristics to cope with a complex world and to understand one another (Minow, 53). A dilemma arises in figuring out how to include disabilities (which the person with a disability has no control over, just like having no control over the color of your eyes) as a mere characteristic of an individual.
To change society's view that disabilities are different from the norm, we need to start with our children and rebuild their unstated assumptions. The MacMillan Dictionary for Children defines "normal" as: "Having or showing average mental or physical development; healthy." The sentence provided as an example was: "We were happy to hear that the baby is normal in every way." This definition tells our children that a person who cannot function on the same level as them is not normal. This illustrates the fact that the words we use do have an impact on others.
The readings were informative and prompted a level of awareness in understanding the words we use and their impact on others. Two words come to mind when contemplating the treatment of other people. "Dignity" and "respect." If society would teach the value of these two words to their children, the concept of equality may be a real possibility. If Zachary is treated with dignity and respect, he will feel "included" and will want to be a contributing member to a society that cares about all people.