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Edward Roberts

I know personally that I have learned a lot at this conference and I go to a lot of conferences, and I have been bored at a lot of conferences in the past few years. For about 20 years I have been actively involved in the independent living, civil rights movement and this is one of the most existing conferences I've been to.

When we leave here I think our charge is to have one to take action on when we get back home. There were plenty of suggestions about things we can do, as organizations and as individuals. I would hope that each one of us internalizes one thing that we begin to do on Monday. It might be to write that article for the newsletter, it might be to spread the word in the local area with the Gray Panthers and other organizations it could beginning of the effort for SSI reform I think that's a critical in terms maintenance there are more tothat I would like to see for sure that were are action oriented and have attended a lot conference where people get excited and when we go back to our busy lives, and we are all extremely busy we forget to take action. Somebody asked one time what would happen, and there are about 40 of us here, if each of us contacted 10 people and transferred that excitement that has been generalized became, for the first time that I know of, a group of elderly persons and disabled persons are beginning to better understand our own potential power, as well as our real power. It is clear that we are about 100 million people in this country. I bet that we could bring conferences of disabled and elderly together in local areas, with our excitement which is contagious, we could make a difference. We were choosen to be here because we are leaders. I want to see that leadership demonstrated. I hope with Judy


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and others here to contact each of you personnally to find out what you are doing in your community. I'd like you to let us know what you are doing so we could piggy back on it, and if you find something that really works, we are all old organizors here, I would like to know what it is. Let us make sure that we care communicating. It is very easy to pick up the phone. I don't write very well, but I sure can pick up the phone with the environmental control system that I have, I can call folks and find out what they're doing and share. I will do that because that is a part of the follow-up of this conference. I'd like you to share that with us.

This conference was sponsored by the Charles Stewart Mott foundation and hosted by the Johnson Foundation here at Wingspread. We truely believe that this gathering was something that had to happen, it was way overdue. For example, I was one of the leaders of the disabled in California when the federal government was about to take on the SSI issue. For the first time, in our state, that I can remember, we brought the elderly leadership and the disabled together, and I can remember how powerful that was. That influenced everyone in our state legislature, we became an essential part of the process, we were involved in the negotiations on how much the state was going to supplement. I got call about 2:00 in the morning from a very liberal democrat legislator who asked me if I would accept $5 more in benefits for the disabled than for the elderly. I refused absolutely and that action joined the elderly and disabled in California at that time. If we can resist, as a group taking on $5 more, which seems like a very small amount, however, it is larger but when you are dealing with a million disabled (there are more or less 700,000 disabled in California). There was a lot of pressure to accept `deals' and by refusing to do that, it gave us credibility and it gave the coalition of the


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elderly and the disabled credibility. We actually got $15 more for both the elderly and the disabled in the long run so we not only got what we were asking for, but where they bought us off, we were all togethr which was fine with me. I would warn you all as we become more powerful in this effort there will be attempts to buy us off. It might be a dollar, it might regulation change. We have to be incredibly aware that the more powerful we become, the more able we are to mobilize support, the more we are going to see attempts at fragmentation.

We are particularly vulnerable because we are so scattered already in different organizations that represent us, in fact I think often these organizations represent themselves and their own survival, not their constituencies. So beware of these kinds of offers. I think we are so pretty sophisticated because we have been around a long time. Let us be sure that when we do accept something that we accept it together and that we work together in that process.

As advocates, our own strength is going to be multiplied so much by this conference. It matters so much what happens when we leve here it matters whether or not we achieve that first success. The Civil Restoration Act is a good place to begin. And some of the things that we think arenot achievable now, that they don't look political can be built up on. We can take the first step and inform people, get people together and begin to talk to one another. I was thinking about how, in the Bay Area the World Institute could bring together the leaders in independent living and aging have a little mini-conference following this conference. That is something you can do when you go back to your area, you can reach out to the Grey Panthers and the other


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aging and disabiity groups and begin dialogue. I am excited by the interest I witnessed here by people in the aging organization about independent living. How powerful this concept is consumer control, it is a philosophy that no matter how severely disabled a person is, that is not be the important factor in what is important is the motivation and belief in yourself.

I went to the California Department of Rehabilitation or a client and I was told that I was much too severely disabled to ever work. The irony is that I later became director of that program. The disabled now provide more and more of their own leadership. More and more people are coming out the independent living movement who are trained and who understand that the primary thing we have to do is advocate. It is also the toughest thing we have to do because there is so little funding available and these are few foundation that are actually willing to stick their neck out. Few people are willing to stick their necks out and commit to something and make something happen; we should learn to reward ourselves and celebrate our victories much more than we have.

I offically certified as a vegetable. When I got polio and mother asked the doctor would I live or die, doctor said she should hope that I die because if I live, I'd be nothing more than a vegetable for the rest of my life. My duty is to vegetables of the world to bring them into the mainstream of life. When we tell people they will be vegetables and we instituionalize people that and we tell them that they are devalued in every way possible. We actually set it that so many of our folks who could be with us, could have joined us in the proces sof living are actually still hidden at home and still in institutions. In fact, we are so caught in this old system, of perpetuating


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the dependency, both the elderly and the disabled. In whether it is putting people into nusing homes or forcing them into institutions. The whole economic system around us is actually invested in tha told system and when we talk about getting resources I wonder why we have never discussed the fact that there are billions and billions of dollars invested in state hospitals for a very small number of people, that money could easily be freed up. It would be a long, big fight.

However, given the right strategy and the right organization, we could free up that money and move it into the community. In terms of resources. Maybe we are not talking about finding, new money maybe we are in fact talking about a reallocation of funding that we already have out there. I think we could find a 100 million more in just a few state institutions. So as we think about resources, let's remember the old way that we have been doing things, and think about the potential for doing things new ways.