In the mid-1970s a small group of us came together in a smoke filled room at an American Association on Mental Deficiency (as it was then called) conference to take up the question: should we form a new national organization to represent the interest of “students with severe and profound disabilities” and their families? The discussion was intense. Lou Brown played the role of devil’s advocate and argued forcefully against the idea. Norris Haring and I argued the affirmative case. We felt at the time that existing national organizations tended to be more into professional turf protection and not sufficiently oriented to advocacy directed to the civil rights and issues of quality of life of their constituent populations. Lou did his job well, because when the vote was taken it was around 15-to-1 in favor of creating the American Association for the Education of the Severely and Profoundly Handicapped, or AAESPH. That title, thank heavens, only lasted a few years because no one could pronounce the acronym and few could remember it.

The organization began holding annual meetings, mainly with presentations by researchers, many of whom were later published in the AAESPH Review, the first TASH journal. The organization soon grew by leaps and bounds as families, as well as persons who experience support needs, found a welcoming forum for their concerns. TASH differed from existing organizations by creating an activist policy agenda and advancing that agenda with congress and state legislative bodies. It took forceful early stands on such topics as deinstitutionalization, non-aversive treatments and inclusion, and in the process generated much controversy but also very high visibility on the political landscape of disability.

This audacious upstart organization began with a dedicated cadre of university-based researchers, many of whom were veterans of the anti-war street protests of the 1960s, and thus, were pretty typically unafraid to challenge the established order, and were disinclined to set aside their personal values and pander for government money. Throughout its history, TASH has undergone numerous stresses and strains having largely to do with the desire on the part of self-advocates to have TASH be their organization as its primary mission, versus the researchers, trainers and other, primarily university based, persons who wanted to keep TASH as a scientifically oriented forum for credible public policy. TASH values versus TASH science has been a major thread of contention in this vibrant organization. In my view this tension is responsible for the organization’s great success and its ability to stay alive and vibrant in the neo-con era. TASH values inform its science and vice versa. Self-advocates and audacious researchers need each other, although they may not always agree on who should get the microphone.