Illinoisans with disabilities:
discovering their political strength

The political strength of people with disabilities in a given state can most often be judged by examining the prevalence and effectiveness of independent living centers. These centers are nonresidential facilities that provide, at minimum, four core services of information and referral: advocacy, independent living skills training and community education and outreach.

It's been 20 years since the first such center was created in Berkeley, Calif., by a group of disabled citizens who wanted more control over their own lives. They saw maximizing the quality of life for people with disabilities as a civil rights question rather than something to be determined by the fickle whims of charity. They raised money on their own and decided for themselves the most effective ways to spend it. They did everything from wheelchair repairs and housing referrals to civil disobedience. Whether they intended to or not, they created a national political movement that today can boast remarkable accomplishments. The most impressive was passage of the Americans with Disabilities Act (ADA), which guarantees disabled people the right of access to facilities and opportunities in both the private and the public sectors.

Disabled Illinoisans played pivotal roles in the advancement of the national disability agenda. Two Illinoisans helped draft the original ADA bill signed into law in 1990 by President Bush: Marca Bristo, president of Access Living of Metropolitan Chicago, and Jim DeJong, former director of the Illinois Coalition of Citizens with Disabilities. The individuals at the centers throughout Illinois also believe that the strong statewide support for ADA, developed mostly through the response networks they created, facilitated the national push for ADA.

Photo courtesy Springfield Center for Independent Living Lee O'Brian and Joann Bayer, members of the Springfield Mass Transit Advisory Board, use the lift on a city bus. Access to public transit is now guaranteed to disabled Americans by federal law.

In Illinois the independent living movement was nonexistent until Access Living of Metropolitan Chicago opened its doors in June 1980. Today Illinois ranks third nationally in the number of independent living centers with 18. (Indiana, by contrast, has only one.) The power and influence of Illinoisans with disabilities has grown correspondingly, from almost nothing at the start of the last decade to the point where programs and services that were mere visions then are now entrenched realities. Perhaps a dozen more centers are likely to emerge in Illinois by the end of the decade.

Approximately 1.5 million Illinoisans fit the new broad federal definition of disability: They have a physical or mental impairment that "substantially limits one or more of the major life activities," have a history of such an impairment or are merely perceived by others as being so impaired. Illinois keeps no count on the number of people with disabilities in the state, but the 1990 federal census says about 16 percent of Americans qualify as disabled. Applying the national percentage to Illinois' population provides the 1.5 million figure for the state.

Despite indisputable achievement, some Illinois leaders of the independent living movement argue that the centers as a whole have never recognized or exercised their power to its full extent. As the state budget crisis continues, will the Illinois centers be willing and able to combat regression, let alone continue to expand? How will they use the powerful new weapon of ADA? Is this a movement on the rise, or has it reached its peak?

The genesis of independent living in Illinois occurred in 1978 when Dr. Henry Betts, medical director of the Rehabilitation Institute of Chicago, called institute board

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member Helen Goodkin into his office. "He just said to me, 'Do something about housing,'" Goodkin recalls. The institute helps people with disabilities (usually those who have been recently disabled) reach the point of maximum functioning. Goodkin said Betts was frustrated that no matter how strong their desire for independence, those released from the institute had pitifully limited options: almost no accessible, affordable housing and no accessible public transit at all.

At about the same time, the federal government was making funds available for the establishment of 10 independent living centers via the Rehabilitation Act of 1973. (The "Rehab Act," among other things, outlawed discrimination against people with disabilities by the federal government and those receiving federal funds. ADA picks up where it left off.) Goodkin put together the mechanism to pursue those funds because she thought creating an independent living center in Chicago was the best way to attack all the barriers people with disabilities faced. She said, "We needed to enlist people with disabilities to solve these problems. They were always reinventing the wheel because they had no networks to share ideas."

Successful in securing federal funds to launch Access Living in Metropolitan Chicago, Goodwin recruited Bristo, an institute alumna, to lead the project as executive director. Before and after breaking her spine in a 1977 Lake Michigan diving accident, Bristo worked as a nurse. She had no administrative experience, but under the independent living philosophy, this was almost an asset. "The emphasis is on life experience," Bristo says. The skill of running an agency could be acquired. Firsthand experience living with a disability, empathy and credibility as a role model for other people with disabilities could not. The whole point of the independent living movement was to get closer to the bone, to reject the traditional service models where nondisabled medical or rehab professionals defined the needs of people with disabilities based on their own, often skewed perceptions.

The whole point of the independent living movement was to get closer to the bone, to reject the traditional service models ...

The centers themselves define independent living as "having control over one's own life," which means "having choices from acceptable options which minimize reliance on others." Helping disabled people tap into available options is the obvious goal, but Bristo says that when the necessary options do not exist, as was the case with accessible public transit in Chicago, the advocacy component of the independent living centers is just as important a goal.

Bristo says the best example of Access Living's successful advocacy for change was wheelchair access to Chicago Transit Authority (CTA) buses. In 1984, a group of disabled consumers formed a local chapter of an organization called ADAPT for the sole purpose of pressuring the CTA to include wheelchair lifts on all its new buses. Working in concert with Bristo's and other groups, ADAPT prevailed after a bitter five-year battle. CTA based its objections on contentions that the lifts would cost too much and would have little use. Now, ADAPT's concept of equal transit access is a federal mandate in the ADA, and many of the same activists who fought the CTA for access are working with the CTA to ensure efficient implementation.

The financial catalyst in fueling and sustaining the growth of Illinois' other 17 centers throughout the state was the Department of Rehabilitation Services. Both state general revenue funds and federal money are distributed to the centers through the department. The department's current spending for independent living stands at $4.5 million annually. About 28,000 people received direct services from an Illinois independent living center in 1991. Department Director Audrey McCrimmon says, "It works. It makes sense on every level." McCrimmon believes that legislators embrace the commonsense basis of independent living. Not only is the deinstitutionalization and integration of people with disabilities the right thing to do morally. McCrimmon says, it makes economic sense. An example is the department's home services program. Those needing physical assistance to live on their own (getting dressed, getting out of bed, etc.) can hire someone to help them and pay them as vendors with departmental funds. McCrimmon says the same amount of assistance that costs $1,100 a month in a nursing home costs $500 through home services.

The department also contributes to independent living through its funding of the Illinois Coalition of Citizens with Disabilities. The coalition is the primary voice in the state legislature for the members of its 41 chapters. Many of Illinois' independent living centers were funded because Illinoisans with disabilities organized coalition chapters and lobbied for a center in their county, The coalition's ideal goal is a center in each of the 102 counties. While that may be impossible, McCrimmon hopes some day to have centers serving each county, whether or not physically located in every county.

When it came time to lobby the Congress for ADA, Illnois' centers asserted their collective power, ironically using the federal money that created them to pressure the federal government for further change. Most letters and phone calls to Congress as well as media attention and demonstrations were generated through the centers' contacting the people they serve. In the end. Republican U.S. Rep. Phillip Crane of Arlington Heights was the only member of the Illinois delegation to vote against ADA. Crane's campaign manager, Kirt Johnson, says, "He thought in some places that the intent of ADA could be achieved in different ways. He thought there needed to be more discussion." During the House ADA debate, Democratic U.S. Rep. William Lipinski of Chicago introduced an amendment that would have required commuter rail services to provide one lift-equipped car per train, rather than all. It did not pass, but Johnson

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says that was the sort of amendment that would have made ADA more palatable for Crane.

This time of coalescing to push for passage of ADA was a period of exceptional harmony for Illinois individual living centers, says Rich Blakley, a quadriplegic and director of the Springfield center. The reality is that centers have a hard time agreeing on a statewide agenda and have disagreements on tactics. Blakley says that disagreement on an agenda is a matter of geography. Public transit, for example, is likely to be a much more passionate issue in Springfield and Chicago than in Carbondale, where there is no public transit.

As for tactics, some think the movement hurts itself by being too radical, while others say it's not radical enough. Jim Charlton, a quadriplegic, is vice president of Access Living and a member of the CTA board. A central figure in the CTA access battle, he thinks the movement has been slowed because not enough centers are as tough on advocacy as they need to be. "Few centers have developed a balance between services and advocacy," he says. "Too many think it's safer to do services and easier to get money." ADAPT members in Chicago would block buses and streets and get arrested if necessary to press their case. Blakley in Springfield says, "We don't see many of those tactics down here." He says the most aggressive action in Springfield was at a transit board meeting when some diasbled people showed up with a plastic chain wrapped around themselves to symbolize their lack of access to public buses. The bottom line, he says, is that activists in both cities achieved their goal using different strategies.

The dearth of uncoerced compliance that followed the Rehab Act has taught Goodwin a lesson: 'Everybody just assumed we could sit back and watch everyone comply'

Funding has a lot to do with the differing levels of political evolution among the Illinois centers. Some have to exert their energies on matters of survival. All except Access Living receive all or the great majority of their money from the Department of Rehabilitation Services. (The department also provides 80 percent of the coalition's budget.) Access Living's financial base is broader, including city and other federal funds as well as donations from Chicago-area foundations and individual philanthropists.

Even McCrimmon acknowledges that centers will have to seek similar funding diversity if they are to keep their autonomy and achieve their full potential as ADA is being implemented. "The Department of Justice did not fund the civil rights movement. Everything that needs to occur to ensure the rights of people with disabilities in this state will not occur through the department of rehab services. It's important that they find other funding sources to allow the flexibility to do things they can't do with state and federal funds."

As for the future, Dick Goodwin, a quadriplegic who is executive director of the IMPACT center in Alton, believes one of the biggest tests of the power of the Illinois centers will come in the implementation of ADA. The ADA guarantee of access to public transportation took effect in January; the guarantee of access to the workplace, public and private, will take effect in July. The dearth of uncoerced compliance that followed the Rehab Act has taught Goodwin a lesson: "Everybody just assumed we could sit back and watch everyone comply."

Charlton says, "ADA is only a crowbar and we better have some muscle to use it." Bristo says centers will have to be prepared to not just use the leverage of the law where necessary but also to offer their expertise to business on how to comply and to convince them to use it. "I'd like for the business community to say, 'Maybe we ought to call them.' To the extent that they can get user input, they can avoid lawsuits and other hassles."

Before ADA was enacted, the business community had objections similar to U.S. Rep. Crane's because of the sweeping nature of guarantees to Americans with disabilities. Jerry Chaplin of the Illinois Manufacturers' Association says his organization joined in the fight to loosen the legal remedies of ADA. "We don't like the idea of jury trials and damages." But now that ADA is reality, Chaplin says, his organization enthusiastically offers training for members on how to best comply.

Another test of the political resolve of the centers, says Goodwin, is obtaining more and better quality home services. Because independence is impossible for so many without physical assistance, quality home services are the building blocks of the independent living movement. Although the Department of Rehabilitation Services claims to have the largest home services program in the nation, clients often have trouble finding people willing to work for the $4.50 hourly wage. The department claims its commitment to home services will grow throughout the future, but the program experienced its first significant cut in the latest round of budget cuts, and intakes were frozen for the rest of fiscal year 1992. Last summer, the department also tried to eliminate the coalition's entire funding from the current budget because, according to a spokesperson, the money was needed for other independent living projects. But the coalition used its clout with the General Assembly to have the money restored.

Confrontations are inevitable as disabled Illinoisans and other Americans assert their newly won civil rights. Goodwin says accessible, affordable housing and integration of children with disabilities into the public schools are some issues that could become as passionate as access to public transit. Bristo believes the future pace and direction of the movement in Illinois is still largely in the hands of its leaders, but only if they realize that the struggle is just beginning. We need to find and flex our political muscle. We have the numbers to make a difference." •

Mike Ervin is a free-lance writer from Chicago who writes extensively about disability issues.

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