Being Heumann

The Center for Independent Living was the first of its kind in the United States. The CIL was created to improve autonomy and independence for people with disabilities, as well as help them access programs and support and find personal assistance. Its first location was in Berkeley, California, where Judith spent a large portion of her life and began her career in political activism. The CIL was founded by Ed Roberts in 1972, who, like Judith, contracted polio at a young age. Ed invited Judith to work with him and earn her master’s degree at UC Berkeley while developing programs and improving the CIL’s reach.

The Civil Rights Movement took place from 1954 to 1968 in the United States and had ripple effects around the world. It involved a series of political movements by activist groups to end racial segregation, discrimination, and attempts to prevent Black people from voting. Jim Crow laws, which created segregated neighborhoods, schools, businesses, and institutions, were struck down by the Supreme Court in 1954, sparking mass upheaval and a hunger for more justice. It spawned several acts designed to end segregation and improve the lives of Black Americans, including the Civil Rights Act of 1964, the Voting Rights Act of 1965, and the Fair Housing Act of 1968. Judith grew up during this era and regrets that the Civil Rights Movement did not include disability activism. Despite this, the movements were a major source of inspiration for her and others and made them feel as though success was possible.

While working at her first job as a teacher, Judith and some of her peers started an activist group called Disabled in Action. Judith describes the organization as being “run by and for disabled people” (63). Within Brooklyn, the group fought to improve transportation and institution access. After winning her lawsuit against the doctor who denied her teaching license, Judith felt a newfound sense of confidence and optimism. She notes that the keys to success in political activism are belief in the self, knowledge of rights and regulations, and a solid group of people to work with. This is what Judith found with DIA, and it is the first of many organizations that Judith cofounds to improve disability civil rights in the United States.

The Disability Rights Education and Defense Fund was formed by the CIL in 1979. DREDF is “the first civil rights legal organization run by and for people with disabilities” (155). DREDF became pivotal in fighting against businesses and institutions that attempted to avoid or prevent laws related to disability accommodation and discrimination from being passed. DREDF also did legal work to support lawsuits. One such pivotal case, Consolidated Rail Corporation v. Darrone (1984), called out Section 504 of the Rehabilitation Act as insufficient. This laid the foundation for the ADA. Furthermore, DREDF built bridges between NGOs and federal, state, and municipal governments to achieve tangible change.

The Department of Health, Education, and Welfare, renamed the Department of Health and Human Services in 1980, was led by Joseph Califano in the 1970s when the Rehabilitation Act was being pushed through. Under pressure from businesses and institutions to amend the bill, Califano delayed the bill for weeks. This led to a massive occupation of several federal buildings across the country, with the primary occupation in San Francisco led by Judith and her colleague, Kitty Cone. For 24 days, Califano and HEW ignored the protests and attempted to disappear, but they eventually caved and signed the unamended Act.

The Individuals with Disabilities Education Act (IDEA), previously called the Education for All Handicapped Children Act, was created in 1975 to improve the Rehabilitation Act. It sought to address education for children with disabilities by making regular public schools accessible, hiring in-class support, and shutting down institutions and special schools. Judith is passionate about the subject of education for children with disabilities because she was denied from attending school until she was nine years old. Many other children like her never attended at all, which she found when she entered fourth grade and some of her classmates are in their twenties. When Judith moved to DC to work under Senator Williams on disability issues, she had the opportunity to help create and implement IDEA. Judith feels that knowledge and education are the path to success and effecting change in the world and that all children, regardless of their abilities, should be given a full and proper education and expected to succeed like anyone else. IDEA came under threat when Donald Trump was elected President and began stripping information about IDEA from the White House website.

The National Council on Disability was formed in 1981, and Republican Justin Dart was appointed its first leader by President Ronald Reagan. Like Judith, Justin contracted polio at a young age and used a wheelchair. Throughout the 1980s, the NCD did important work collecting data on disability issues and found that unemployment was the biggest concern. This provided solid evidence that further action was needed to address discrimination and lack of accommodations for people with disabilities in the United States, leading to the ADA.

The Office of Special Education and Rehabilitative Services in the Department of Education exists to strategize, collaborate, and implement policies related to the education and rehabilitation of children with disabilities. In 1992, after Judith married Jorge, she was invited to work for the Clinton administration, and she insisted on working for OSERS. When Judith began working for OSERS, she hired Howard Moses to be her partner and help her create means for people with disabilities to be heard and provide their say in future policymaking. She also hired several people with disabilities to work at OSERS, which ended up requiring a renovation to accommodate them. Judith worked for OSERS for seven years.

Section 504 of the Rehabilitation Act was proposed in 1972 to address issues of discrimination, exclusion, and lack of accommodations for people with disabilities. The Act sought to combat discrimination in employment, education, housing, and general accessibility. By 1977, however, the bill was still unsigned by HEW, and Judith and a large group of protestors occupied the Federal Building in San Francisco. Their goal was to force Califano to sign the bill as it was originally written; he had attempted to make amendments to appease businesses and institutions by exempting them and excluding people with substance use disorders from protection. The protests lasted 24 days. On April 28, 1977, Califano finally caved and signed the original Act.

The United Nations Convention on the Rights for People with Disabilities was ratified in May of 2008 and addresses discrimination and disparities in accommodation and quality of life for people with disabilities internationally. It demands that certain rights be addressed, such as access to education and justice, respect and dignity, and the right to employment. Judith worked for the Obama administration’s State Department and witnessed the federal government’s reaction to the treaty; ultimately, the United States declined to sign the CRPD and has not done so to this day. Judith finds this disconcerting, as the United States has been a leader in disability rights for decades but seems to fail on an international level.