Graphic: The Disability Rights and Independent Living Movement

Denise Figueroa

Audio transcript: On the tension between systems advocacy and lobbying at the independent living centers
Date: June 26, 2001
Interviewer: Sharon Bonney

Note: Transcripts have been lightly edited; therefore there may be slight discrepancies with audio clips.

What happens is as an organization we're required under the federal law to do systems advocacy, and I don't know how you can ever define systems advocacy without including lobbying as part of it. In order to change the system, change the laws, change the regulations, you have to write letters to your congressmen, your senators, to your local legislators. You've got to go talk to them, and meet with them, and explain why this needs to happen. We call it educating them. We say that we're going and educating our legislators. There have been moves on the federal level to change the lobbying legislation, to define what we do as lobbying and require us to file as lobbyists for that process.

Even a not-for-profit can do some lobbying as long as they don't use federal money to do it. You hopefully use your person who is state-funded to do that stuff, although even on the state level they make you sign lobbying certifications if you get over a certain amount. You try to raise money to use your private funds for those purposes—do fund-raisers, and that sort of thing. Most of us aren't extremely successful at fund-raisers. There's a handful of independent living centers, I think, across the country that have developed the networks and have been able to do the fund-raising that they need to do, but a lot of us haven't figured out how to do that yet, and that's just because we're still trying to survive.

We also can't allow ourselves to be stopped from doing the advocacy because we're afraid of being called on for having lobbied. We had a situation in this state where one of the centers had rented a bus to bus people to Albany for lobbying, basically. When they had the feds come in and review—RSA came in and reviewed—they wrote them up on it. They're still arguing it, and asking, in writing, from RSA why it is that this is not allowed to be done when they're supposed to do systems advocacy. They still haven't gotten anything in writing.

I really think that if the centers are strong and we stay together—and that's another reason we need organizations like NCIL [National Council on Independent Living]; we need to band together and make sure that we're not split apart and picked off one at a time for doing activities that are technically lobbying when that's what it says in our state law and our federal that we have to do.

End of transcript

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