People First and the Growth of Self-Advocacy Groups in the US


In the disability community, “people first language” is commonplace these days. It’s a meaningful term whose use people with disabilities started advancing years ago to convey that persons with disabilities wanted to be known as people before being identified by their disabilities. So it made perfect since that this power-packed term would also be used to describe the development and growth in self-advocacy groups around the world.

After hearing about the impact of self-advocacy and the People First Movement in parts of Europe and Canada in the 1970’s, a group of people with disabilities and their support workers from Oregon began to put together their own statewide self-advocacy convention. The convention, held in 1974, marked the beginning of the People First network in Oregon and the People First Movement in the United States, which laid the foundation and models for how to begin and run grassroots self-advocacy groups in the United States.

A hallmark of an authentic self-advocacy group is that it is self-advocate led. These are not support or social groups, although groups do offer these benefits to members, but have a distinct mission to advocate for systems regarding disability issues with the primary means of advocacy being the voices of people with disabilities.

As people in the US became more aware of the People First Movement, more conventions and gatherings were held in other states. By 1975, there were 16 different People First chapters, and by the 1980s, the People First Movement had gained serious momentum and attention and national meetings were being organized. Self-Advocates Becoming Empowered, or SABE, the most prominent national self-advocacy organization in the US, was formed in 1991.

Local self-advocacy groups continued to expand and there was an estimated 600 groups by 1995. Groups in many states collaborated to form support networks, like Florida Self-Advocates Network’D, or Florida SAND, here in Florida, which began to work together on the national level through SABE. State networks provided local groups an efficient and effective means to make their voices heard with state legislatures Today, Florida SAND has 14 affiliated self-advocacy groups around the state but there are many others not affiliated with the network.

Self-advocacy groups provide individuals with the esprit de corps, socialization, empowerment, and confidence they need to work on disability issues at the local and state levels and fight for long-term, meaningful systems change. Early groups were instrumental in closing institutions and changing perceptions about people with disabilities. Today, representatives from self-advocacy groups sit on local transportation boards, school board committees, and other municipal groups and help raise awareness about the abilities of people with disabilities. Many hold local Disability Awareness Days in their communities.

The People First Movement came to be because individuals with disabilities were tired of being known for their disabilities instead of their person hood. They also deemed it time for them to be more involved in decisions that affect their lives and to have a louder, stronger voice on disability issues. “Nothing About Us, Without Us” is the rallying cry of self-advocates everywhere.

Many state networks and/or local groups continue to have “People First” as part of their group name, such as People First of South Florida, which formed in the 1970s and has three chapters today. Most groups, however, choose unique, empowering names, such as "The Transformers" in Santa Rosa County, Florida, and Stand Up for Independence, or SUFI, on Florida’s Treasure Coast. The names of self-advocacy groups that continue to advance the People First Movement today may vary, but their message is the same and very clear: “We are people first.”

For more information on Florida SAND, visit FLSAND.org.

Information for this article was collected from a variety of sources.

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