By Lexi Amos, graduate student in applied anthropology at Missouri State University
I am an applied anthropology graduate student and I am also the mother of an eleven-year-old son who receives special accommodations at school for a high functioning “disability”. My son works hard, but continues to struggle in school, especially with making friends. So it was a huge surprise when my son came home with the phone number of a classmate to call for a play date.
As I dialed the number, I mentally rehearsed what I would say to my son if, once again, our invitation was declined. A woman answered and I introduced myself. I told her that my son would like to have a play date with her child. She paused and nervously told me that her child wasn’t like other children. She told me that her child was different, “special”, and it might be a mistake. I explained that my child was “special” as well. She was obviously excited. She told me I was the first person who had ever asked her eleven-year-old child over for a play date. Her child had a “typically developing” twin who had lots of friends. She explained further that parents never tried to get to know or invite her other child over. I wish I had been more surprised, but this wasn’t the first special needs parent to share with me their child’s social isolation.
As we spoke I realized just how weird it was that we hadn’t met before. Our children have been in the same class for three years. We both drop off our kids at school, are members of the PTA, go to parent teacher’s conferences, etc. We both want our children to have friends, but our efforts have been almost entirely unsuccessful. I began to question how it was possible, in a small Missouri town, where both families have lived for years, that such isolation and seclusion is the undesired reality for many “disabled” people and their families.
Thankfully, our children found each other and became friends. However, the question of why their friendship took so long lingered in my mind. A personal and professional interest in legal policy influenced how I attempted to explore this question. I believe that one possible explanation for the social isolation that some “disabled” people and their families experience is a direct but unexpected consequence of special education legislation.
It is important not to discount the significance of special education legislation. Prior to the passage of the Education for All Handicapped Children Act (EHA) in 1975, many states had laws barring deaf, blind, learning disabled (previously “mentally retarded”), and emotionally disturbed children from attending public schools. Many of these children were institutionalized or segregated into handicapped schools where little education took place. The Individuals with Disabilities Education Act (IDEA) was created in 1990 out of ERA. The primary goal of both pieces of legislation was to provide “a free and appropriate public education” (FAPE) for children with disabilities. EHA and IDEA as well as the Family Educational Rights and Privacy Act (FERPA, 1974) restrict disseminating information on any individual to a non-authorized third party. These restrictions were implemented to provide confidentiality to persons with “disabilities”.
There is a very real need to protect people’s privacy and confidential information, especially in marginalized populations. However, I have come to believe an unintended consequence of these policies has been the creation of social barriers for the people they “protect”. Communication between parents of special needs children is prevented by IDEA legislation and many “disabled” people are not capable of organizing activities by themselves. The legislative approach toward education as solely academic continues to leave “disabled” people socially marginalized.
Families are stranded, waiting for communication, acceptance, and “normalcy” outside of school. For all the benefits of special education legislation, it does a great disservice to the individuals it serves outside of the school. Many of us find online the support and information we are missing in real life, but I ask you this: How can we better achieve community and acceptance for ourselves, our children, and someone searching for a friend in real life?
I believe it is necessary to find ways that special education legislation can be amended to assist in creating a full life for the people and families it protects, and it is the field of applied anthropology that is uniquely suited for this task.