By Douglas Lathrop

Centers for Independent Living? They're those places where all you people get sent to live, right?"
That's a commonly held misconception of CILs. When I worked for one as a grant writer, I heard it dozens of times, often followed by, "Well, what do they do for you people, then?"

I'd answer by telling them about my move to San Diego. It was 1996, the local economy was in the toilet and rental housing was there for the taking--unless you used a wheelchair, in which case you spent weeks seeing lots of stairs and narrow doorways. It finally occurred to me that my new employer could help, so I met with the CIL's housing counselor. He gave me a list of accessible apartments and I found one I liked the very next day.

Because of that, my fundraising spiels for the center sometimes sounded like Hair Club for Men ads: "I'm not just an employee of a CIL--I'm also a member."

CILs are as old as the disability movement itself. In the early 1970s, at places like the first Center for Independent Living in Berkeley and the Atlantis Community in Denver, a philosophy took shape based on the simple notion that people with disabilities had the right to control their own lives. It was, and is, a radical idea, unthinkable to a lot of folks who assume they know what's best for "you people"--well-meaning parents, profit-driven HMOs, burned-out bureaucrats, everyone but "you people" yourselves. But like all good ideas, it took root and started to grow. Today there are hundreds of CILs throughout the nation, in all 50 states and in every major city.

Basically, a CIL's mission is to empower people with disabilities--all disabilities, not just crips using wheelchairs--to become self-sufficient. By law, a CIL receiving federal funds must have a majority of people with disabilities on its board and staff, and must provide four "core services"--information and referral, peer support, independent living skills training, and advocacy both for individuals and for systems change. Many CILs offer other services as well, such as housing referral, employment counseling or training in management of personal assistants.

That's the theory, anyway. Do all CILs live up to it? Hardly. Some are no better than the bureaucracies they replaced. And like all politically charged organizations, CILs have their factions and conflicting visions. So what separates the good ones from the bad?

According to Gina McDonald, president of the National Council on Independent Living, a good CIL "has an even mixture of advocacy activities and services that people want." Simply offering core services won't cut it; if a CIL is unwilling to do its share of rabble-rousing, it's only doing part of its job.

Another important ingredient is staff empowerment. Says Patricia Yeager, executive director of the California Foundation for Independent Living Centers, "When you empower staff, you empower consumers." Yeager also believes that, in addition to striking the right balance between services and advocacy, a good CIL reflects the larger community and can adapt to changes that occur in that community over time.

The goals of the independent living movement are pretty simple, really. If you're tired of living with your parents--you can move out. If you need to fire your personal assistant--you can. If you want to stay out late at the local bar--no more curfews to worry about. And if you want to bring someone home from that bar, without having to sneak him or her past your mom or the night nurse--go for it, so long as you're both consenting adults.

That's what it's about--being an adult. The philosophy of independent living flies in the face of assumptions that people with disabilities can't handle adulthood.

The five CILs described below aren't necessarily the "best" in the nation. They are, however, outstanding examples of what CILs can accomplish, for individuals as well as in the community.

Foundation of Resources for Equality and Employment for the Disabled (FREED), Grass Valley, Calif.; 530/272-1732; Web site: www.freed.org

Geographically, FREED is in a powerful position. Its service area--from the Sierra foothills to the Nevada border--is predominantly rural, giving the center high visibility. Yet it is also only an hour away from the state capital, Sacramento, which enables it to advocate effectively for change at the state level.

"We probably do more systems advocacy than most CILs," says executive director Tony Sauer. "When somebody comes in who is being discriminated against, we work with them; but at the same time we try to look at the bigger picture."

Other services offered by FREED include technical assistance for individuals and businesses on ADA compliance and a "Fix-It Program" that conducts home repairs and modifications for people with disabilities and seniors. FREED also sponsors a biweekly program, "Independent Living," on public-access cable in Nevada County--where the center's former director, Sam Dardick, is in his second term on the Board of Supervisors. Sauer sees this as further indication of FREED's impact on its community.

"The independent living movement," Sauer says, "needs to make sure it stays on the cutting edge."

Arizona Bridge to Independent Living (ABIL), Phoenix; 602/256-2245; Web site: www.abil.org

For Susan Webb, director of ABIL, people with disabilities are a part of the larger community in which they live, and the key to success for them--and the center--is to make connections with that community rather than remain isolated.

"We participate in the community outside the box," Webb says. "We--and our consumers too--don't stay just focused on the disability community. People with disabilities belong out in the general community, and we put ourselves there."

It's a philosophy Webb herself lives by with her active participation in a wide array of civic and community organizations. Her staff, and the people they serve, also spearhead advocacy efforts on numerous disability issues from transportation to housing to personal assistance services.

At ABIL, the staff takes direction from consumers, not the other way around. And the services the center provides--a large number, far beyond those mandated by federal law--are seen as complementing their advocacy efforts, not working against them. "Consumer control is something that we take very, very seriously," Webb says. "I think we do a really good job of marrying services and advocacy. We do both, we do both well, and we don't find a conflict."

Everybody Counts CIL, Merrillville, Ind.; 219/769-5055; Web site: www.thetimesonline.com/org/everybody_counts

With a staff of only nine--smaller than most CILs--Everybody Counts has to literally live up to its name. Says executive director Teresa Torres, "We don't have the luxury of having a person who is the peer-counseling guy or somebody who's the housing person--everybody has to be a jack of all trades."

Nevertheless, Everybody Counts has arguably done the impossible: become a force for change for people with disabilities in a region that is one of the most diverse and economically distressed in the country, located in a very conservative state. The consumers it serves are both urban and rural, and more than 60 percent are black or Hispanic.

As at all CILs, the majority of board members and staff here are people with disabilities. Everybody Counts take it one step further, however, in that most are also former consumers. "We afford them opportunities to become actively involved in efforts to make larger changes that will affect not only themselves but others," Torres says.

"What we are," he adds, "is what we think all centers should be, and that's a true reflection of the people in the community--cross-age, cross-race, cross-disability--actually rolling up our sleeves and getting in there and doing what needs to be done."

Topeka Independent Living Resource Center, Topeka, Kansas.; 800/443-2207; Web site: www.sunflower.org/~cirrus/tilrc

"We're a get-in-your-face kind of place," says Alene Jensen, TILRC's personal assistance services manager. "We teach consumers to advocate for themselves so that they can do it in the future."

Like FREED in California, TILRC takes advantage of its location in the state capital to give people with disabilities a voice in the halls of the legislature. This year, for example, the center succeeded in persuading the state to restore $3.5 million in disability services that had previously been cut from the budget. Its interests aren't limited to Kansas, however; it is also a major player in nationwide lobbying efforts on behalf of attendant care services. On a more personal level, Jensen is proud of the fact that TILRC gets, on average, two people each month out of nursing homes.

In addition to its core services, TILRC has an in-house legal department that handles discrimination cases for consumers. Like Everybody Counts, TILRC has its own ADAPT chapter, and takes pride in its firebrand reputation. "We have the independent living philosophy in our hearts," Jensen says.

Cape Organization for Rights of the Disabled (CORD), Hyannis, Mass.; 508/775-8300; Web site: www.capecod.net/cord

When asked about CORD's service area, executive director Bill Henning replies, "The United States." Although technically CORD serves only Cape Cod, Nantucket and Martha's Vineyard, Henning believes the issues it addresses have national significance--from persuading Massachusetts to withdraw its support from the Olmstead brief to battling the use of restraints on children with disabilities in public schools to successfully filing suit against MCI for providing substandard communications relay service.

"What we do is very much in a bigger context," he says. "There's not a whole lot of kick-butt advocacy out there for people with disabilities, so we focus on that. If it's going to take a workshop, we'll do a workshop. If it's going to take a demonstration, we'll have a demonstration. If it's going to take a lawsuit, we'll do that."

CORD doesn't neglect the service angle, however. Henning feels that providing top-quality independent living services are an excellent way to encourage civil rights advocacy. "It's a wonderful feeder system," he says. "People come in for individual services and then go into systems advocacy. They're not mutually exclusive at all."

Nevertheless, Henning doesn't ever want CORD to be seen as just another service organization. "We view ourselves as a civil rights group and not a human service group. When you have a population that's 70 percent unemployed, the response has got to be more than just human service programs."

To find a CIL in your area, call the National Council on Independent Living at 785/825-2675 or check out its Web site (www.idsi.net/tri/il.htm).

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