40 Big Ideas

Summary

We have to keep fighting for disability rights because laws can change over time. Standing up for our rights showed everyone that we belong in the community. It helped pass laws saying we have a right to go to school, get a job, and get the services we need to live. Leaders like Judy Heumann, Ed Roberts, Bob Kafka, and Lois Curtis spoke up about important ideas that became laws, including the Americans with Disabilities Act.

Laws protecting the rights of people with disabilities are not carved in stone. They can be amended, repealed, or defunded as societal values and attitudes change. As the Greek philosopher Heraclitus noted, the only constant in life is change. Further, those powerful laws and court decisions do not erase centuries of negative assumptions, irrational fears, and marginalization, resulting in culturally learned stigma and stereotypes, referred to today as implicit bias. This fragility underscores the critical contributions of the Disability Rights Movement to the lives of people with disabilities. We must know our history to know why we must continually engage in advocacy.

Asserting the rights of people with disabilities has made significant strides in disrupting the idea that they are unable to contribute to the community and that institutional segregation is best for the community. Over several decades, it helped build an arc of civil rights, individualization, community inclusion, participation, and belonging. Today’s vocational rehabilitation, Medicaid waivers, and federal education laws are aligned in requiring each individual’s person-centered plan to be based on the person’s strengths, preferences, and interests, and include community living and employment outcomes based on informed choice. We must not lose these.

Photo courtesy Tom Olin

Building upon the 1954 U.S. Supreme Court decision in Brown v. Board of Education and the 1964 Civil Rights Act that excluded people with disabilities, disability activists have been advocating consistently for full and equal civil rights for all persons with disabilities. Leaders, including but not limited to Judy Heumann, Ed Roberts, Bob Kafka, and Lois Curtis, led or participated in efforts that were critical in passing major legislation, including Section 504 of the Rehabilitation Act, the Americans with Disabilities Act, and the Individuals with Disabilities Education Act. Their activism also influenced public opinion around later Supreme Court cases, including Olmstead v. L.C.

Nevertheless, children and adults with disabilities still fight for full inclusion in school and higher education, access to healthcare, community living, assistive technology, and competitive integrated employment with leaders like Tia Nelis, Ari Ne’eman, Max Barrows, Julia Bascom, T.J. Gordon, and Nicole LeBlanc. Millions of Americans without disabilities take for granted accommodations such as curb cuts, push button doors, and Universal Design for Learning, and do not realize these conveniences for them are a result of advocacy for disability rights.

As a person with more than 50 years of lived experience as a father of a disabled daughter and stepdaughter, and seven years after joining the disability community myself, I appreciate the disability rights journey. Advances and losses in the 177 years since the opening of The Experimental School for Teaching and Training Idiotic Children highlight the essential rights and responsibilities we have to push forward. Each of us must remember that we have a right to vote and an absolute responsibility to communicate regularly with our elected officials about our issues and needs, because they do not have a crystal ball and do not know what is on the mind of their constituents. We cannot become cynical about the political process and must remember that disability is not a partisan issue. Disability today includes about 42 million people; it intersects with all other demographics and includes people of all political parties. In fact, more than 50 pieces of federal disability legislation between 1963 and 2017 passed both chambers of the U.S. Congress with strong bipartisan votes. Federal and state legislation, litigation, and funding are continuous issues and often threatened, however.

Disability rights advocacy is a participatory sport and requires eternal vigilance if we are to retain our civil and human rights laws and judicial protections, and to move from civil rights achievements in policy to social justice and community belonging in everyday life. As long as children with intellectual and other developmental disabilities (IDD) continue to spend the majority of their school days in segregated school settings, their neurotypical peers, who are future parents, teachers, physicians, and employers, will continue to develop implicit bias that perpetuates stigma and segregation. As affirmed in the Developmental Disabilities Assistance and Bill of Rights Act amendments of 2000, “Disability is a natural part of the human experience that does not diminish their rights… (which include) “full inclusion and integration in the economic, political, social, cultural, and educational mainstream of United States society.” These are the values of disability pride and leadership.

We must remember and practice Abraham Lincoln's words: “The people know their rights, and they are never slow to assert and maintain them when they are invaded.”