Interview with Tia Nelis: U.S. Self-Advocacy Leader
By Laura Hershey (LauraHershey@compuserve.com)
Background
Tia Nelis is a leader in the U.S. Self-Advocacy Movement. Currently serving as the president of People First of Illinois, she is also a past president of the national self-advocacy organization, Self-Advocates Becoming Empowered. In addition, she is employed full-time at the University of Illinois in Chicago's Research and Training Center on Aging and Developmental Disabilities, where she helps with research; provides training on self-advocacy, rights and responsibilities; and helps coordinate the advisory group. Nelis has recently been very active in promoting awareness of the U.S. Supreme Court's Olmstead decision, which declared institutionalization a form of disability discrimination, and community living a civil right. U.S. States are now being urged to implement the Olmstead decision and move people out of institutions. Nelis' group works to educate both people with disabilities and policymakers about Olmstead. Disability World interviewed Nelis during a recent conference of the American Association of Mental Retardation, where she was one of only a handful of self-advocates.
Interview
LH: Can you tell me a little about what self-advocacy is, and how the movement started?
TN: A lot of different groups claim to be the first group. Oregon, Nebraska, and Canada all claim to have started the first self-advocacy group. Mostly people are saying that two men from Oregon came out of the institution and were living in the community, and nobody was around to help them. So they decided to start a group together, and help get support for their friends, and learn how be a part of the community and speak up for what they wanted. And that's how the first group of people started leaning about self-advocacy.
LH: When was that, approximately?
TN: It was in the 1980's.
LH: What about People First of Illinois? What kinds of activities and projects do you do?
TN: People First of Illinois has helped pass legislation so that people with disabilities have to be included on state and local agency boards and committees that are making decisions about peoples' lives. There's not really a set number of people they have to include right now, but at least we're getting people to the table, and they're there to help make those decisions. We've worked on the Olmstead stuff, to help close institutions. We're doing some fundraising for our group right now. We just did our plan, and a lot of it includes helping the groups get stronger and build support. Advisors are people who help the groups but don't make all the decisions. Advisors are very hard to keep.
LH: How many local People First groups are there in Illinois?
TN: Twenty-six chapters.
Institutions and nursing homes
LH: Can you say a little more about the Olmstead work that your group is doing in Illinois?
TN: We felt it was important that people learned about what was happening with the Olmstead stuff and learned about living in an institution. Some of our members have lived in an institution, in a nursing home, but there are still a lot of other members who never went to an institution before. We were supporting members to go visit, and to see what it was like; and also to start groups inside the institutions, so that when [people living in the institutions] do get out, they'll have some connections. Some of the chapters include people that live in a nursing home or in an institution. One month they'll [meet] at the institution, and another time they'll have their group outside of the institution.
LH: And how do the institutions react to that?
TN: It's really hard to get in once they find out what People First is all about -- people making their own decisions and choices. They don't like that. But a lot of times we start with the basic stuff -- choice-making, rights and responsibilities.
LH: What do you think are some of the most important things that people need in order to succeed at living in the community, after they've been living in a nursing home or institution?
TN: They need to have some connections on the outside. Once they're out of the institution, they need the support team in place to help them. A lot of times people get out, and then everybody just disappears. I think that the state needs to come up with a plan of how they're going to do that before they start shutting everything down and turning people out.
LH: And has Illinois started making that plan?
TN: Illinois stinks at services for community living. Actually, we are [still] trying to get them to even think about Olmstead. It's very hard because we have Voice of the Retarded right in our backyard. Voice of the Retarded is a parents' group who believe that their children should be in institutions. They have very strong connections with legislators. They're able to get to a lot of places. People with disabilities aren't always able to get there, to be able to talk to the legislators, and get those connections as fast.
Organizing Strategies of People First
LH: So what strategies does People First use, when you're up against a group like that with such political power. How do you strategize politically to fight for your point of view?
TN: We never go into a room, where we know that a lot of those parents are going to be there, alone. We've had some interactions where they can get very, very scary at times. They go right up and scream in people's faces, and threaten them. They go as far as trying to get your funding taken away once they learn about what you're trying to do.
LH: What are some of your other organizing strategies in People First?
TN: People participated in a vigil when the Olmstead case was being heard. Also, we've done some flyers, in simple language, for people to understand. There's a kit out there about Olmstead, but some of that stuff is really hard for people to understand, so we've done some things with that. We educate our people about what Olmstead is, and then we pass out buttons that say "Ask me about Olmstead." People can educate [other] people like that.
LH: Do you think that there is a lot of progress happening? Or do you feel like there's still lots of people who are in institutions and not getting what they need in order to get out?
TN: I think it depends on where you live. There are some places that are doing really, really great things. And also around self-determination -- that's another big issue that people are advocating for. Some projects out there are doing really neat things -- helping people learn how to use different resources with the money that's available to help people get out. But I still think there's a lot of states that need a lot of help to be able to do that. A lot of the trouble in Illinois is that people [living in institutions] aren't their own guardians.
LH: So somebody else, like a family member, has control over where they live?
TN: Right.
Canadian connection
LH: How did you get involved in the Self-Advocacy Movement in the first place?
TN: I got involved in the Self-Advocacy Movement ten years ago now. People First of Canada [came] to Chicago to talk about what self-advocacy was. Five of us started a group in Illinois. Actually, we weren't even knowing what self-advocacy meant. They [the Canadians] came to Illinois with really great tee-shirts, jackets, and hats, and that got the group interested! That's why they wanted to start, not knowing what would happen later! (laughs)
LH: Have you maintained contact with that Canadian group?
TN: Well, they have all new people now. They basically came to get people started, and that was about it.
LH: Had you been active with disability rights issues before that?
TN: I wasn't involved in the disability community before. When I first got out of high school, I worked at a YMCA day care. As I said, a group of us came and heard People First of Canada and were interested in starting a group.
LH: Did you know then that you would eventually be a leader in the group?
TN: We didn't know anything that was going to happen with any of it, because when we first started our group in Illinois, it was the only group run by people with disabilities. The rest of the groups were parent groups and professionals.
Challenges in getting disability leadership accepted
LH: Do you think that things are improving in some of the national disability organizations as far as including more people with disabilities in their leadership, and on their boards of directors?
TN: I think there's some progress, but I also think that people don't know how to include people [with disabilities]. That's the problem.
LH: What makes it difficult?
TN: Materials -- how to adapt materials; not knowing that their stuff is too hard to understand. They give you a huge pile, and they don't tell people what they have to do with those materials. They just hand it to them and say, "Here, read this." Understanding that they have to have transportation or support ahead of time; making sure that people are able to get to and from the meeting. People without disabilities can do some of those things as a part of their job; it's a lot harder for people [with disabilities] to get off of work during the day or, if they have to go out of town, be away for any amount of time. [Also,] they expect you to pay for things ahead of time and reimburse you. A lot of people [with disabilities] don't have that kind of money. People from sheltered workshops are not going to be able to pay up-front. And I think a lot of that has to do with learning to communicate with each other. But I also think that there's still some training needed for people who are going to be on a board or committee -- learning how to speak up in a meeting, make their own decisions, and be a part of the group.
LH: For the national self-advocacy movement, what are the biggest issues now?
TN: Olmstead and community living are huge on their list. One neat project is Project Leadership, which they're doing with the National Parent Network, to show that self-advocates and parents can work together, and that not everybody is like the Voice of the Retarded; and also so that they can see that there really are people with disabilities working and living, being a part of the community just like everybody else. It's been a learning experience for each group.
Aging and disability issues
LH: I know you do a lot of work in your job, around aging and disability. What kind of issues do you see facing people, especially people living in the community, as they age?
TN: One of the harder things is that people don't want to leave their jobs [at retirement age]. They want to stay at their job, because all their friends are there, and they figure that when they go home, they're not going to have anything to do. So, part of the problem is figuring out what they can do. They don't want to just be sitting at home doing nothing.
Another issue that has come up with aging is, What happens when your friends pass away? Death and dying is a real issue. Are people going to tell you that your friends passed away, or are they going to tell you something else? And also, parents becoming older, and [having to take] care of your parents. And figuring out what's going to happen after parents are no longer there.
LH: You talked earlier about the importance of self-determination, and besides meaning just the right to make choices, I know that that also refers to some specific programs were people get access to the money to pay for services and then they can control how the services are provided. Is that also what you're talking about?
TN: I think that one of the things that could really be great… is if people did have that control over what services they got, and how much support they needed. Some people don't need people there all the time for support. They may need just someone to help them get up in the morning and then they're fine. But some of the agencies make the person take the support for a longer amount of time. If we could pick and chose how much support we have, [we could] give some of those services to other people who really need that care.
International Collaboration
LH: Are there any issues that the self-advocacy international movement works on together? I know political systems are different from country to country. But are there common issues that people work on at an international level?
TN: Labels. Also work.
LH: Can you talk about both of those?
TN: There's some issues with labeling. People work on changing the names of different organizations so they're not offensive to people. And I also think work is very important, people making money. It’s interesting: In [some] countries, they don't have to work, because the government takes care of all of that. I once visited people in Belgium, and they didn't really have to work, because they were taken care of. Money was given to them. A lot of people still wanted to work, and worked within the community, but sometimes they weren't getting paid.
I think the biggest thing, at most places I've ever been, is transportation. It's the biggest barrier for a lot of people. A lot of people say that they're concerned with getting transportation, with getting back and forth -- especially in suburbs. There's no bus service out in certain areas, or public transportation. Also, it's not accessible in some areas. A lot of transportation quits in the middle of the day, people can't get anywhere at nighttime. They have to make other arrangements, which can be very difficult.
LH: You went to Belgium? When was that?
TN: I went two years ago, for a week.
LH: What was it for?
TN: I had gone to a conference and heard a professor, and he was doing a paper. He said they included people with disabilities on their project, and they were talking about their project at a conference, and they were using some pretty big language. I said to him, "I don't know how many people you include with disabilities on this, but this is pretty hard to understand. So you need to make it more accessible." And he said, "Well, you could come to Belgium and help us." And I was like, "Okay." Then I didn't hear from them for a while, but then they did. They called, and I went. The things that they knew about in America were President Clinton, CNN, and Michael Jordan! They were big Michael Jordan fans, and I didn't know it at the time. But I had brought the professor a copy of Jordan's jersey. He was the envy of the town!
LH: Were you meeting self-advocates there, too?
TN: I did. Their self-advocacy group is brand new, just starting out. They were working on a booklet that the Prime Minister wanted the self-advocates to review, and talk about what they liked about it, what they didn't like about it. They took a highlighter, to highlight all the stuff that they didn't understand, and gave it back to them, and said, "Put it in simpler language."
Labels and Language
LH: About labels -- what kinds of labels is the Self-Advocacy Movement working to change? What language is better?
TN: Most self-advocacy groups are talking about getting "mental retardation" out of organizations' names. After 125 years, AAMR [the American Association of Mental Retardation] finally decided to change their name. Some people were not very happy about that.
LH: Did that just happen at this conference?
TN: Yes.
LH: What did they change it to?
TN: They haven't figured that out.
LH: Why do you think people resist changing the name?
TN: Well, there were a lot of reasons. People were saying that they didn't want to change the name because there's certain money that is specified for each disability, and they were afraid to lose the identity and lose the money. A lot of people say that they just got new letterhead, and they don't want to spend more money on that. That's a big one. [Also] they're afraid that the Voice of the Retarded will be against them, because a lot of those groups have Voice of the Retarded parents in their organization.
LH: What do you hope the AAMR changes its name to? Do you have a term that you prefer?
TN: "Developmental disabilities" would be my choice, if they had to use a label with "disability" in it. But I don't think it's going to happen, because they thought it was too broad of a label, and they might get lost in the crowd.
LH: Have you discussed the label issue with people in other countries?
TN: I think that they're using "learning difficulties" or "intellectual disabilities."
LH: What do you think about those?
TN: A lot of people here don't like either one of those, either.
LH: Do you feel like the Self-Advocacy Movement is pretty inclusive of people with developmental disabilities and physical disabilities? Are a lot of your members people who have both?
TN: It's really interesting because there's a lot of people involved who have a physical disability, and now we're getting people with mental illness starting to show up and be a part of the group. I think that we still have some work to figure out how to work together. But I think that people want to learn how to start working with each other, and I think that Olmstead has built a bridge, and people are working together on a common goal.
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