A prominent organization in the self-advocacy movement for people with developmental disabilities. Before self-advocacy groups such as People First, the only formal advocacy movement for the rights of people with developmental disabilities was run by parents, who spoke for their children. People with developmental disabilities wanted a chance to speak for themselves, and organized a convention in 1973 to talk about this.

At that first convention, which took place in Salem, Oregon, they were having trouble thinking of a name. Then one man said, "I’m tired of being called retarded. We are people first." The name stuck. There have now been similar conventions in several countries.

People First has evolved into an international organization with many chapters worldwide. The movement is concerned with human rights issues such as closing institutions, securing the right to vote, the right to live in our own homes, the right to date, have a sex life, choose not to be sterilized, and get married, the right to make our own decisions, and other rights that a lot of people don't think about.

Another important aspect of People First's work is making sure that people with developmental disabilities know what our rights are in the first place and how to stand up for them. Many of us have had so few rights for so long that we didn't even know we had the basic ones. I'm one of the lucky ones — I've had at least some experiences besides compulsory segregation — and even I have trouble recognizing things as rights.

People often underestimate People First and groups like it, and assume it is only a social club. And unfortunately, in some places that's what it gets turned into — by non-disabled people who want to make sure that people don't realize our own power. In spite of this attempt to restrict the politics of such groups, many chapters and members have been a powerful force for change.

One of the more famous members of People First is Astra Milberg, a Canadian self-advocate with Down's syndrome who wrote a letter to a baby with Down syndrome who was thrown off a bridge by her mother. She's also written chapters for a book giving her opinion on the genetic screening that leaves her feeling like an endangered species. At another point, a group of UK self-advocates with Down's syndrome disrupted a genetic screening conference and demanded that people listen to them. They told the audience that they're people, not diseases, and deserve to be part of the debate about whether they should exist or not.

Additionally, there has been the fight to provide a real standard of living instead of throwing people in institutions for being disabled.

The Justice Department was against us. They didn't believe in what we were doing. I had a bunch of questions they wouldn't answer. They didn't want to work with us. They are now coming to see our side of the story, since they saw so many people die.

We had more than fifty people die in there. They get beatings. They get sexual abuse. They get neglect. They die.

But now the word is getting around about what we did. I've been traveling to other states — Alabama, Wisconsin, Illinois. They want to learn from what we've done.1

That's a quote from Ed Sewell, a member of a People First chapter in Tennessee that successfully closed a state institution. They went inside, got involved with the residents to find out what they wanted, and took things to the courts. They faced intimidation by parents who wanted to keep their children inside, as well as the usual prejudice that people with developmental disabilities are stupid eternal children who must never make our own decisions. And they won.

Few people outside the disability rights movement know about groups like People First. This is too bad. A group of people has formed who often have a diagnosis whose very name is one of the ultimate insults, who have been through some of the worst atrocities society can throw at a person, who are dedicated to stopping those atrocities, and who have done a good deal of work in that direction. This movement has existed for decades. And too many people either don't know it exists, or treat it condescendingly as a cute thing that people do for fun. If people listened to the stories of people in this movement, they might think differently about people.2


Dybwad, Gunnar & Bersani, Hank, Jr. New Voices: Self-Advocacy by People with Disabilities. Cambridge: Brookline Books Inc., 1996.
Gran, Judy & Byzek, Jody. Judy Gran SAYS. http://www.mouthmag.com/says/judysays.htm. Mouth Magazine. Accessed August 2005.
Johnson, Roland. Lost in a Desert World: An Autobiography. Plymouth Meeting: Speaking For Ourselves, 1999.
Milberg, Astra; Soucie, Michael; & Hingsburger, Dave. In: Difference: A Little Book About Diversity. Ontario: La Presse Divers Cité, Inc./Diverse City Press Inc, 2001.
People First History. http://www.open.org/~people1/about_us_history.htm. People First of Oregon. Accessed August 2005.
People with Down's Syndrome Disrupt Screening Conference Woman with Down's syndrome tells doctors: 'I am a person not a disease.' http://www.daa.org.uk/e_tribune/e_2003_07.htm. Disability Awareness in Action. Accessed August 2005.
Williams, Paul & Shoultz, Bonnie. We Can Speak for Ourselves. London: Souvenir Press, 1982.


1 Byzek, Josie & Gwin, Lucy. Escape! From Tennessee's DD Centers http://www.mouthmag.com/peoplefirst.htm. Mouth Magazine. Accessed August 2005.

2 That I have the academic skills to post on E2, and am simultaneously a part of this movement, is one reason I node about these parts of the world. E2 is by its nature somewhat intellectually elite or at least rigorous, and therefore it's way too easy for a part of the world often marked by lack of standard intellectual skills to slide unseen beneath the nodegel. Part of my reason for noding is to expose it to people who don't have the automatic personal connection to it that a family member or disabled person might.

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