Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

interviewed by Vicki Gaylord

In this interview, 61-year-old Cliff Poetz talks about some of his life experiences as a self-advocate, and reflects on what's important to him now that he's an "elder."

Q: I think of you as an "elder." I use "elder" as a term of respect for an older person who has not only lived a long time, but who has also lived their life in a way that provides leadership and inspiration to others. Is it okay that I think of you as an "elder"?

A: Yes, that's okay with me.

Q: I'm wondering if there are other "elders" who have inspired and guided you during your life?

A: Gloria Steinbring has been one of those. We both lived at Portland Residence [an intermediate care facility] at the same time. She now lives independently in her own apartment with supports. Given the problems she faced earlier in her life, that's remarkable. She has been a good leader for people with developmental disabilities. [Gloria is a well-known Minnesota self-advocate].

Also, Charlie Lakin [director of the Research and Training Center on Community Living, University of Minnesota]. He's well-respected and knows what he's talking about, and has advanced the idea of closing state hospitals. People trust what he says in the courts and the communities, which tends to move mountains that people may resist moving.

Gloria is very sensible and knows what she wants, and Charlie I think is the same way, but he uses facts and data to prove his point, which is good when dealing with Congress or the legislature. If they don't see the numbers they won't fund it.

Q: When you think back over your own life, what are some of your accomplishments that you're most proud of?

A: A few years ago we got the legislature to pass the Remembering with Dignity bill which asked to put names on the graves of the people who died in Minnesota's institutions. Their graves only have a number, and no grave marker with their names. And we've asked for a simple apology from the State for treatment of people with disabilities kept in institutions, and for burying them without markers. We were successful and got the money to start putting makers on some of the graves. There's a bill now to get money to mark more of them [5,000 now have markers, 7,000 are still unmarked; see www.selfadvocacy.org/programs/rwd]. But we didn't get the apology. The legislature gave a public apology for the people who were committed to camps in WWII who were Japanese. They have not done the same for the people with disabilities in institutions. I want to know why not? I'm trying to get a hearing again on a bill for an apology. We've been working on this since 1994.

Q: How did you get started in self-advocacy?

A: I've been active as a self-advocate since the 1970s. I was living at Portland Residence and served on their client council, became president, and along the way we started giving presentations for Arcs and DD Councils around the region and nation. I also used to serve on the Arc-Hennepin board of directors, then served two terms on the state Arc board, and then the national board. Irving Martin was the first self-advocate on the national board, which was a big step for them. I came after Irving. There are three self-advocates on that national board now, which is good.

Through all that I got invited to testify before Senator Kennedy's subcommittee on health and human services in 1973. What's remarkable about that was that my father was very over-protective and didn't want me to do it. Then my mother said, "He's living in the city now, and he's going to do it anyway." So they signed the permission form. We spent three days in DC and most of the staff couldn't believe I went to a movie by myself in DC. The night before I was to testify I wrote out three pages of testimony about the state hospitals, and about the need for greater involvement by self-advocates and parents in policymaking organizations such as DD Councils.

Two weeks ago we had 300 self-advocates and staff at the Day at the Capitol in St. Paul. We've come a long way and providers are now putting in their job descriptions that staff are to be advisors to People First groups in their facilities. And part of their job descriptions is also to spend time at the legislature with their self-advocates. We've come a long way in terms of being over-protected.

Q: Did you ever think it would happen?

A: No. And I never dreamed that as of this year the legislature would get a grant to hire people with disabilities to work in their offices as interns. Now that will educate the legislature on how well people with disabilities can work.

Q: Do you have certain beliefs or values that you've tried to live by?

A: Being able to live as independently as possible and be able to do what other people do, whether that's going to church or Twins games or a movie. All we've ever said is we want to be treated as equals. We're getting there. I would have never believed we would have a governor of a state who's blind; David Paterson, governor of New York, is blind.

Q: I understand that at this time of year you're over at the state legislature a lot. What is it that you're working on there?

A: We're worried about General Assistance Medical Care, and we're also worried about what else the budget cuts will mean. We've been advocating to improve the system and give people the right to choose their own services, and hire and fire their own staff if they want to. That requires money to be allocated for that. Some budget cuts may mean people may not be able to pay for DSPs and may have to go back into nursing homes. About two weeks ago I did a speech at the day at the legislature to remind legislators they had to raise taxes to fund the programs that are serving us. It went very well. We won't know until the end of the session how this works out.

In the early 90s everybody finally found out that self-advocates could speak for themselves and begin to advocate for their needs themselves. And that's what I do.

Q: When you look to the future, what are some of the things you still want to accomplish?

A: If we have the money I want to see the State restore the budget cuts so people can continue to live independently, because God forbid they should have to go back to larger institutions again. Also, hopefully when they complete the light rail they're working on it's accessible. And if the legislature builds new buildings they should build them to be accessible.

Q: When you think of younger people with disabilities today, are there any lessons you've learned in your life that you want to pass along to them?

A: I think we haven't done a good job of educating young people in school about what services are out there for them. Back when I was growing up, after age 18 or 22 they would send you to a group home or a sheltered workshop. Under state law now planning for everyone with a disability kicks in at 14. Sometimes that planning goes on without parents or self-advocates being involved. I'd like to see parents and self-advocates say, "Tell me what my options are" when they're a junior in high school; that would give them 18 months to find out what options they have and make plans.

I think we have come a long way, but we have a long way to go. I think we have to be patient sometimes because some of the stuff may take years to work through at the federal or the state level. It takes the legislature a long time to feel comfortable on how they spend money and why. If you build good solid relationships with legislators that will help move the process. What will happen with the budget shortfall will be another problem. It's going to cost less money in the long run to support people to live independently.