Impact of Disability History, Identity and Community - Yesterday, Today and Tomorrow

W. Roy Grizzard, Ed.D.
Assistant Secretary Of Labor
Office Of Disability Employment Policy
U. S. Department of Labor

2004 National Youth Leadership Conference
Arlington, VA
July 26, 2004

Good morning. Thank you for asking me to kick off your Monday morning at the National Youth Leadership Network’s 2004 Conference. Since I spent many years as an educator and principal prior to becoming the first Assistant Secretary for the Office of Disability Employment Policy, being around young people like yourselves is kind of like coming home for me. It feels really good to be home.

I would also like to specifically acknowledge

• Peter Squire-Chair of NYLN
• Betsy Valnes-Vice-Chair of NYLN
• Marissa Johnson-Mentorship Committee chair for NYLN responsible for the agenda for the day
• Laurie Powers- YLN Project Director from Oregon Health Services University
• Alison Turner- YLN Project Coordinator from Oregon Health Services University
• The National Youth Leadership Executive Committee (Ensures that all of the NLYN activities are youth-directed)

Disability History Overview

During the time you spend at this conference, a substantial part of the agenda will be focusing on disability history, identity and culture. Why are these topics important? Why do you as a young disability leader need to know about disability history? Knowing this history is important because “A generation which ignores its history has no past and no future.” (Robert Heinlein).

To be an effective leader in the disability community, requires a understanding of disability history because of the significant role it has played and will continue to play in the formation of disability identity and culture in the disability community of which you are a part. You will need to draw on and learn from the past, as you plan the actions you will take and support in the future as a youth leader in your community.

In the past, having a disability - in any society - was viewed very negatively. In nomadic tribes because people with disabilities could not contribute to the wealth of the tribe, they were viewed as useless and were left to die whenever the tribe moved to a new location.

The Greeks sought rational reasons for disability. They reached such conclusions as: epilepsy was a disturbance of the mind; and people who were deaf could not learn because communication was essential to learning.

Early Christianity brought a period of sympathy and pity toward people with disabilities. Churches organized services for people with disabilities within their congregations and homes. Disability was viewed as an impurity of some kind, which they believed could be purged through worship and forgiveness of sins.

To the early Greeks and Romans and into the Middle Ages, people with disabilities were a source of ridicule--people with mental impairments and hunched backs were kept as court jesters for the royal courts for their entertainment. Christians feared people with disabilities as interest in supernaturalism increased. Disability was viewed as a manifestation of evil.

With the Renaissance came the initiation of medical care and treatment for people with disabilities. Education was available to people with disabilities for the first time in Western recorded history. In comparison to what had occurred previously, it was a time of enlightenment when social norms and dreams for a better future seemed to encourage active participation of people with disabilities in their respective communities.

It was during the Renaissance that the so-called "charity model" and "medical model" began. This "charity" model is based upon a benevolent society, which provides services based upon a presumption of "what is best" for those served. In the name of charity, people with disabilities were often institutionalized because institutionalization was promoted as doing what was best for people with disabilities.

The first settlers of the American colonies would not admit people with disabilities. They believed such individuals would require financial support and enacted settlement laws to restrict immigration of many people, including those with disabilities. People with disabilities however, obviously were born in the colonies, and others acquired disabilities after they were already settled here. So-called “ugly laws” were implemented to keep anyone who was diseased, maimed or deformed in any way off of the streets.

By 1880, however, after the development of almshouses for people who were poor or in need of basic support, most states and territories had programs for people with specific types of disabilities. Unfortunately, these programs often were large institutions where people who were blind, deaf, mentally retarded or had physical disabilities were sent for treatment, education or to spend their entire lives.

In the first half of the 20th century, the United States’ involvement in two world wars had a profound effect on the way people with disabilities were viewed and treated by the culture at large. As thousands of disabled soldiers returned home, society made provisions for them to re-enter the work force. The need for training or re-training created the first federally funded program for people with disabilities -- a program now known as the federal-state vocational rehabilitation system.

The biggest changes, though, came in conjunction with the civil rights movements of the 1960s. As African Americans, women and other social minorities gained political influence, so, too, did people with disabilities. Prior to the influence of the civil rights movement in the 1960s, disability was widely understood to be a medical problem requiring a medical solution. Under the medical model, disability was defined as “sickness” or pathology that resided in the bodies of people with disabilities. People with disabilities were thus viewed as defective and deficit, dependent upon medical science and powerful professionals for a “cure.”

Impact of the Civil Rights Movement

With the advent of the civil rights movement came broad sweeping change. People with disabilities began to reject both the medical definition of disability and the control that medical professionals had over their lives. The independent living movement was taking hold, which challenged the notion that people with disabilities needed to be institutionalized. Rather than letting others define them as defective and in need of fixing, people with disabilities themselves were defiantly redefining disability in terms of social and political factors, and insisting that no one knew better than they did regarding what they needed.

Rejecting the medical model with its focus on curing the individual, the focus shifted to society's negative attitudes and substantial physical and social barriers as areas that needed fixing. What followed was a long overdue dialogue, with the disability rights movement taking the lead. For the first time in U.S. history, consumers, advocates and service professionals began an intensive examination of the human service delivery system to decide what was missing. Community-based programs for people with disabilities began growing all over the nation in an attempt to fill the gaps left by these missing services. New concepts, new technology and new attitudes began to make a difference in the lives of people with disabilities. The tides had turned; there would be no going back.

Beginning to view themselves as powerful and self-directed, people with disabilities began banding together to fight for their civil rights. In the early 1970s, they lobbied Congress to add civil rights language for people with disabilities to pending legislation. In 1973, the legislature passed the revised Rehabilitation Act. Its most important aspect was Section 504, a one-sentence paragraph prohibiting any program or activity receiving U.S. Government financial assistance from discriminating against qualified individuals with disabilities.

On a parallel track to the disability rights movement was a campaign to provide access to educational services for children and youth with disabilities. The Education for All Handicapped Children Act, passed in 1975, ensured equal access to public education for such students. Renamed the Individuals with Disabilities Education Act (IDEA) in 1990, it called for a free and appropriate public education for every child with a disability, to be delivered in the least restrictive environment. For the first time laws were in place requiring that students with disabilities become educated alongside their peers without disabilities in general education settings to the greatest extent appropriate. The importance of this legislation was of mammoth dimension because of the connection between education and employment success. Through the No Child Left Behind Act today, we are building upon those initial legislative successes.

In 1990, more than 30 years of efforts within the disability community culminated in the enactment of the Americans with Disabilities Act (ADA), which we celebrate today. Modeled after the Civil Rights Act of 1964, this landmark U.S. Government anti-discrimination law grants broad civil rights to people with disabilities by ensuring equal access to employment opportunities and public accommodations. Signed into law by President George Herbert Walker Bush, the ADA guarantees that no person with a disability can be excluded, segregated or otherwise treated differently than individuals without disabilities.

With this act, Congress recognized what the disability community had been advocating for years--that people with disabilities want to work and are capable of working and being productive members of their communities. The ADA identified the full participation, inclusion and integration of people with disabilities into society as a national goal, a goal which we are still working toward implementing today through President George W. Bush’s New Freedom Initiative.

New Freedom Initiative and ODEP’s Role

Two weeks after taking office, President George W. Bush launched the New Freedom Initiative (NFI). I am certain you are familiar with it. Under the strong leadership of Labor Secretary Elaine L. Chao, the Department of Labor gave the responsibility for the employment-related aspects of the NFI to the Office of Disability Employment Policy.

In line with our charter, ODEP’s mission is to increase employment opportunities for adults and youth with disabilities.

As you may know, Congress created ODEP, through the Consolidated Appropriations Act of 2001, to bring a heightened and permanent long-term focus to the goal of increasing employment of persons with disabilities.

The “employment” umbrella includes recruiting, hiring, retaining, and promoting people with disabilities, as well as the types of employment-related supports that people with disabilities sometimes need to be able to fully participate in the workplace and in their communities. Things like housing, transportation, assistive technology, and healthcare.

OVERVIEW OF ODEP

So, how does ODEP work to implement the New Freedom Initiative?

First and foremost, ODEP is a policy office. We do not regulate, investigate, or adjudicate.

By strategically designing research and grant initiatives to examine specific areas of policy inquiry, ODEP develops recommendations and works with other agencies to facilitate their implementation. ODEP focuses on both the supply and demand sides of the labor market.

ODEP’s pilot programs, research, and technical assistance efforts focus on:

• Establishing partnerships with employers and assessing and meeting their business needs.
• Making the Federal Government a model employer of qualified individuals with disabilities; and
• Increasing the capacity of workforce development systems to increase positive employment outcomes for youth and adults with disabilities.

Youth with Disabilities

As you leaders are well aware, the statistics about the educational and employment achievements of youth with disabilities continue to show that they lag well behind their peers without disabilities.

We know that high-quality transition programs can reverse these trends and help youth with disabilities become a valuable and valued part of the workforce.

Because increasing the number of youth making a successful transition to work is integral to achieving the employment-related objectives of the New Freedom Initiative, improving transition outcomes is one of ODEP’s top priorities.

At ODEP, we approached this issue strategically. In addition to the involvement of a caring and supportive family with high expectations for the youth and an educational environment that enables youth to reach their learning potential, research shows that all youth, including those with disabilities, need the following in order to transition from school to young adulthood successfully.

• Preparatory experiences include career interest and information about careers, including education and entry requirements, knowledge of reasonable accommodations, income potential, and work-readiness skills, including computer skills.
• Connecting activities include support-related activities such as ensuring academic tutoring, if necessary; providing exposure to supportive peer and adult mentors; and helping youth explore self-sufficiency issues like assistive technology, transportation, benefits planning, and health maintenance.
• Career preparation and work-based experiences include vocational assessments, site visits, job shadowing, internships, entrepreneurial ventures, and/or actual paid employment activities building up to on-the-job experiences. Such experiences are an essential component to promoting informed job choices.
• Youth development and leadership includes providing structured relationships with adults in both informal/formal and individual/group mentoring situations, and exposing every youth to personal leadership skills such as self-advocacy and self-determination, as well as activities that build self-esteem, interpersonal relationships, and teaming. This is what you are all about. These next couple of days you all will focus on youth development and leadership.

We are currently engaged in a number of grant-related systems change research projects and activities to ensure that the infrastructure is in place to provide the type of transition services which research indicates are key to successful transition outcomes.

The Disability Culture and Community

Another area you will be learning about during the conference is the impact of the disability community and disability culture. As rights and social standing have become more available to individuals with disabilities, they have begun to see themselves as part of a larger community with a distinct cultural identity. A disability culture has emerged and will continue to emerge, with you as young disability leaders playing a key role.

We are proud for being who we are people with disabilities. Through the collection of disability history, the establishment of disability studies in academia and the support of artistic expression of the disability experience through art, music and literature, disability culture is defining itself through positive self-images and is influencing society to value disability as a distinct and valuable way of life.

When we think about culture, we usually think of groups of people who share values, rituals, customs, traditions, language, folklore and art and who have developed a sense of unity and identity because of a common history or set of experiences. Groups within the disability community fit within this definition in that they often share a common language (such as American Sign Language, Braille, terms used to talk about disability or themselves). In addition they share, customs and traditions (such as celebrations of disability consciousness and pride), art (including, poetry, paintings and plays by disabled artists and performers), and folklore (such as stories about real or fictional disabled people, from Helen Keller to the mobility-impaired character in My Left Foot), as well as a common history of frequently being treated without dignity and respect.

While disability culture is like other cultures in some respects, it also differs in some ways. Because most people with disabilities do not have parents who are disabled, disability culture differs from other cultures because we have to learn it from each other. Disability culture is also unique in that it crosses all economic, gender, and race barriers.

As you continue to learn more about disability history, and identity over the next few days, I challenge you to think creatively about how you can use that knowledge as a resource to motivate and initiate change both in your own communities and in the greater disability community. The disability community of which you are a part has been and will continue to be the driving force behind the development of legislation and policy development affecting people with disabilities. You can be sure that when you talk, people will be listening.

Through disability history, culture, and the tireless efforts of the disability community, a foundation has been laid upon which great things can be achieved. As the young disability community leaders of tomorrow, your possibilities are boundless, and I for one will be very excited to follow where you lead. Working together, we can achieve the ideals of the ADA -- equality of opportunity, full participation, independent living, and economic self-sufficiency. These are not the end, however, but instead only the beginning of our opportunities and achievements.

Thank you for your time today and thank you in advance for the future work which you will do.