The Culture of Disability
Webster (2009) defines culture as customary beliefs, social behaviors, and traits of a group that are transmitted from generation to generation. Members of the same culture share a similar way of life and experience everyday life in similar ways. This leads to shared language, customs, and values.
So how does this apply to persons with disabilities? In fact, dating back to the 1960s, it has been recognized that there is a distinct separate culture for persons who share the inability to work, play, or perform an age-appropriate life function because of a physical or mental impairment. This article explores the evolution of the culture of disability. In addition, it briefly examines the role of technology in this evolving culture.
Civil Rights for Persons With Disabilities—The Wheelchair Revolution
The fight for the rights of persons with disabilities began in the era of the civil rights movement for African-American people in the United States. In the fall of 1962, Ed Roberts, a quadriplegic, began his college education at the University of California at Berkeley (Shapiro, 1994). Mr. Roberts contracted polio as a child and fought his whole life to attend school. His enrollment at the University of California started a quiet revolution that continues to this day. Mr. Roberts’s determination to attend college ushered in the recognition that persons were more than their disabilities and should be seen as people first. But the road has not been easy.
Like many persons with disabilities, Mr. Roberts experienced isolation, loneliness, architectural barriers to his wheelchair, dependence on others, and discrimination. One of the biggest challenges for this college student was where to live. None of the dormitories was wheelchair accessible. Neither were classrooms or the library. On top of this, the wheelchairs on which Mr. Roberts and others had to depend often broke. This could mean weeks of waiting for a repair. Instead of accepting these problems, Mr. Roberts became a true activist. With the help of others, Mr. Roberts successfully secured funding to renovate living space for persons in wheelchairs, including a wheelchair repair shop.
The approach of this pioneering group in California became the blueprint for the disability movement. Above all, this group believed that persons with disabilities could be independent and self-sufficient, and they belonged in the mainstream of society. This was the first time having a physical or mental impairment was recognized as a social problem.
Section 504 and the Americans With Disabilities Act
For any social problem to be addressed, it needs political support. And with political support come money and laws. For the fledging civil rights movement for persons with disabilities, the first law protecting their rights came without political pressure or lobbying. In 1973, the United States Congress passed the Rehabilitation Act (ada.gov). This act was actually a spending bill. Part of the act, Section 504, stated that any agency that received federal funding could not discriminate against a person based on disability.
So what did Section 504 accomplish? Section 504 began the process of renovation of streets, buildings, buses, and phone booths, and it guaranteed interpreters for persons with hearing loss. These are just a few of the things 504 still mandates for federally supported schools, agencies, and businesses.
In 1990, the Americans with Disabilities Act (ADA) was signed into law. This federal law explicitly prohibits discrimination against persons who currently have a disability or have a history of disability. This was the first time the law recognized that disability could be temporary but that a person was entitled to protection under the law while disabled. The ADA also guaranteed protection to persons who would be regarded as having a disability by others, whether their condition was documented or not. This could include persons who, due to age, could no longer perform major life functions. Importantly, this law also protects the families and caregivers of persons with disabilities and persons with mental and/or psychiatric conditions.
The ADA prohibits discrimination in employment and guarantees access to government services and programs (Title I, ADA, 1990). ADA goes on to prohibit discrimination by private businesses, insurance companies, and public places (Title II, ADA, 1990). The reach of ADA is significant. For example, businesses must show that making accommodations would effectively bankrupt them to limit their compliance. In addition, the ADA has effectively opened the door to providing care for millions of aging persons in the United States. The price tag for these services is and will continue to be enormous.
Culture Within a Culture
From the earliest days of life in the New World, persons with disabilities were viewed as a burden on society. In fact, persons with obvious physical problems were sent back to England in the early days of the colonies (Shapiro, 1994). So who makes up this culture within a culture?
According to the United States Census Bureau (2009), there are an estimated 51.2 million persons with disabilities living in the United States today. This is roughly 18% of the population. Twelve percent of these persons are reported to have a severe disability. When age is considered, 11% of children between the ages of 6 and 14 have identified disabilities, and 72% of persons over 80 have a disability. Of these, government estimates state that 10.7 million persons in the United States need help with one or more activities of daily living, such as bathing or using a telephone. Surprisingly, only 2.7 million people over the age of 15 use wheelchairs.
The vast majority of persons with disabilities have physical limitations. Persons with problems in cognitive functioning or mental illness make up the second largest group with 14.3 million persons affected by these disabilities. Diagnoses with Mental Retardation and Dementia of the Alzheimer’s Type account for 6% of this 14.3 million people. Problems with speaking ability are noted in 2.6 million persons. Persons who are legally blind number 1.8 million, while people with hearing loss are reported as 1 million. These numbers may be an underestimate that does not include aging members of the United States population, who tend to underreport problems with vision or hearing.
Historically, persons with disabilities have been chronically under- or unemployed. Only 56% of persons with disabilities were employed in the past year in the United States. This is compared to persons without disabilities, 88% of whom were employed. As a result, 26% of persons with disabilities live at or below the poverty level. This has a negative impact on the level of independence they are able to achieve. Many are forced to live with relatives, rather than on their own.
Technology Equals Access: From the Phone Booth to the Internet
In 1889 in Hartford, Connecticut, the first public telephone was installed in a bank. The inventor was William Gray and his pay phone required the user to deposit coins at the end of the phone call (TelephoneTribute.com). Over the next century, the world has witnessed the rise and fall of the phone booth. At one point, there were literally millions of phone booths worldwide. With the advent of cell phones and the Internet, it seems unlikely that the next generation will even know what a phone booth is. So how does this affect the culture of disability? Probably more than any other group in the United States, the advances in technology have improved and enhanced quality of life for persons with disabilities.
Consider these advances: The electric wheelchair has allowed millions of people to more quickly and efficiently ambulate from place to place. Grab bars have improved the safety of persons while showering. Plastic has made common items used at work and at home lighter and easier to handle. Lifts have allowed persons in wheelchairs access to public transportation. These are just a few of the inventions that have improved quality of life for persons with disabilities.
One of the more recent advances that allow communication and information access to millions of persons with and without disabilities is the Internet. The history of the Internet dates back to a world with 10,000 primitive computers in 1962. From that point in history, the Internet, which was born out of a United States government defense project, took on a life of its own. Originally conceived as a way to link communications during a military attack, what was to become the Internet advanced by 1972 to civilian email. The first email was sent by Ray Tomlinson in Cambridge, Massachusetts. He was the first to use the @ to separate the sender’s name and network address. By 1976, email had entered United States politics, with Jimmy Carter and Walter Mondale using it as a campaign planning tool. That same year, Queen Elizabeth was the first head of state to send an email. Finally, in 1982 the term “Internet” was used for the first time and the world has never looked back.
So how many people use the Internet? United States Census (2009) sources indicate that 61% of persons without disabilities in the United States use a computer and 51% use the Internet. This is compared with 36% of persons with disabilities who use a computer and 29% of persons with disabilities who access the Internet.
What does this mean for quality of life in the culture of disability that has been traditionally denied equal access? Realistically, lack of access to technology places anyone in the United States at risk of being unable to be an informed and productive member of a global world. While the Internet is not without problems, it does provide a wealth of information on rights, accommodations, and accessibility to resources. Information is power, and technology of all types continues to be one of the keys to equality for those who live in the culture of disability.
As this article has shown, there are literally millions of persons living in the United States who are members of the culture of disability. As human service providers and Nonviolent Crisis Intervention® Instructors, we can serve as guides and resources to persons within this culture who do not have access to services, accommodations, and technology. In providing Care, Welfare, Safety, and SecuritySM, we have a responsibility to be ever conscious of the frustrations that come from being a member of a cultural minority.
About the Authors
Dr. Lisa Kuntz is a licensed psychologist and a state and Nationally Certified School Psychologist. She has extensive experience in the evaluation, assessment, and treatment of persons with disabilities. Fluent in American Sign Language, Dr. Kuntz has worked with persons who are nonverbal, including persons with Autism Spectrum Disorders (ASD).
Dr. Kuntz is a Nonviolent Crisis Intervention® Master Instructor and is trained in the assessment and treatment of sexually offending children and youth. Dr. Kuntz is an Assistant Professor of Psychology at Saint Joseph College in West Hartford, Connecticut.
Dr. Billie McNealey is a licensed Clinical Child Psychologist and a state and Nationally Certified School Psychologist. She holds a certificate in Autism Spectrum Disorders and a diplomate in School Neuropsychology. Dr. McNealey presently works for the Simsbury, Connecticut Public Schools, where she is a member of the Autism Assessment Team and is responsible for the completion of district-wide School Neuropsychological Evaluations. Fluent in American Sign Language, Dr. McNealey has extensive experience in the evaluation, assessment, and treatment of persons with disabilities.
Shapiro, J. (1994). No pity. Three Rivers Press: New York
Originally published in the Journal of Safe Management of Disruptive and Assaultive Behavior, March 2010, © 2010 CPI.