Center for Independence of the Disabled, New York (CIDNY)
In this image: A flier announcing the creation of CIDNY in 1978, designed by Patricio Figueroa.
The Center for Independence of the Disabled, New York, or CIDNY, is an Independent Living Center (or ILC), and one of the City’s oldest disability self-advocacy groups. Its roots trace back to the National Paraplegia Foundation, or NPF, which was founded in the 1940s by Robert Moss and his World War Two veteran colleagues as the civilian and research counterpart to Paralyzed Veterans of America (see DHNYC entry Robert and Lucille Moss). NPF is probably best remembered for founding Paraplegia News, the first periodical aimed at people with disabilities as an independent readership and distinct consumer demographic.
As the Boomers came into disability activism in the 1970s, NPF drew in figures like Pat Figueroa and Carr Massi, and they, among others, reincarnated NPF into New York’s first independent living center.
“Independent Living” was an idea pioneered around 1970 by Ed Roberts and other college-age activists, who formed a pivotal nexus at the University of California at Berkeley. This group largely consisted of severely disabled young men and women who possessed the ambition and drive to attend a highly competitive college, live in on-campus dorms and participate in the wild and woolly hippie era, notwithstanding their physical impairments.
This was a truly radical notion. Wheelchair users in those days were still frequently referred to as “patients,” and consistent with this language of presumed dependency, Berkeley administrators initially imposed a 10 pm curfew for students with disabilities. INdependent living, by contrast, meant living as freely as possible, and making decisions for yourself when it came to medical care, supportive services and the other activities of life. In short, rather than a solely individual burden, disability was a matter of individual choice and community adaptation.
To be sure, disability activism already implicitly operated from this perspective, but never before had it been stated quite so explicitly, so bluntly--or so consequentially.
The first independent living center was founded at Berkeley in the early 1970s. It made quite a name for itself as a grass-roots organizing and community center, and the idea quickly spread. In 1978 the federal Rehabilitation Act was amended to add Title VII, which for the first time provided federal funding for the development of a national network of independent living centers. The transformation of NPF into CIDNY came about that same year.
There are presently some 33 ILCs located in the State of New York. They generally operate on a county-wide basis. ILCs receive partial funding from the State and are subject to oversight by the Access-VR subdivision of the State Department of Education. They have a unique dual role: within the scope of their geographic jurisdiction they (1) provide federal/state/local program guidance and service referrals to members, consumers and other people with disabilities, and (2) advocate for social progress ("systems change") in both the private and public sectors.
CIDNY is the first and one of the largest ILCs in the State. Based in Manhattan, its evolution since 1978 reflects some of the fundamental formational challenges of the disability rights movement. Despite its all-embracing and unified-sounding name, the “disability rights movement” is a coalition of different groups with varying impairments and issues, and with different historical and organizational backgrounds.
The main pieces of the disability rights coalition are (1) people with sensory impairments, i.e., people who are blind or low vision, and people who are deaf or have reduced hearing; (2) people with mobility impairments, generally people who use crutches or wheelchairs; and (3) people with neurological or developmental disabilities, of whom the best known are probably people on the autism spectrum.
People with sensory impairments have the longest history of self-advocacy and the greatest degree of acceptance in nondisabled society (blind people have been most successful on this front, as shown, for example, by a tax credit that is available to the blind but not to anyone else with a disability). People with neurological and developmental impairments are the most recent to develop concerted, sustained self-advocacy.
The term “disability rights” was coined in the 1960s by people with mobility impairments, and for many years the New York City Disability Rights Movement was dominated by issues faced by the mobility impaired, such as narrow doorways, stairs, and automobile-related questions.
CIDNY’s early days plainly showed this mobility focus. Most of its leadership consisted of wheelchair users, and it took on mobility-related issues like accessible public transit and polling places, and curb cuts.
Starting in the mid-Nineties the organization began addressing a broader range of issues, eventually including services for people with traumatic brain injuries, and the needs of homeless people with disabilities, among others. CIDNY produced reports on “disability literacy” among health care providers, on subway platform safety for people with visual impairments, and worked on issues such as taxicab usability for people with sensory restrictions; emergency preparedness problems in City and State agencies; and bringing people with disabilities out of institutions such as nursing homes.
Also beginning in the mid-1990s, CIDNY expanded its geographic scope into the borough of Queens, after the ILC originally set up there collapsed. Spurred in part by the enormous demographic diversity of the population of Queens, CIDNY has moved beyond what had once been a largely though not entirely white membership and leadership. In 2003, for example, it produced a study on barriers to vocational rehabilitation for Asian-Americans with disabilities, which led to system changes in language policies and related procedures. Today 75 percent of CIDNY’s consumers and staff are minorities and people of color.
DHNYC recently sat down with CIDNY’s Executive Director, Susan Dooha, who is retiring after more than twenty years. We reviewed a litany of important policy changes that were effected through lobbying, organizing and litigation, but when asked what accomplishments she was most proud of, Susan immediately cited this widened demographic and disability focus.
CIDNY has attracted, and continues to attract, a great many highly talented individuals. Some of its better known luminaries include Susan Scheer, Freida Zames, Anne Emerman, Harilyn Rousso, and Marilyn Saviola.
by Warren Shaw
