“Nothing about us without us” is a saying that sprang from the disability rights movement in South Africa in the 1980s. It is a saying that encompasses much of the hard work that has been accomplished during the last 20 years, both within the disability rights movement, and by the Metropolitan Center for Independent Living (MCIL) in Saint Paul, a leader in the independent living movement. On October 24, MCIL celebrated its 20th anniversary.
To understand the independent living movement, we need to backtrack to the 1960s, to the movement’s founder, Ed Roberts. Roberts was a polio survivor who was paralyzed from the neck down. He was the first person with a disability to attend the University of California at Berkeley. Robert’s determination not to be denied the education of his choice turned into a long history of activism that rubbed off on many people who came in contact with him.
Roberts’ success at Berkeley attracted other disabled students, and together they created the first Center for Independent Living (CIL), which helped people with disabilities inside and outside the school become integrated into the surrounding community. None of this was without struggle. Roberts had to fight with the school’s officials just to gain entry to the school, because they said the school wasn’t accessible to people in wheelchairs. Once they did accept him, Roberts and the other students with disabilities initially had to live in a hospital on campus, until their efforts resulted in funding to make the community more accessible through ramps and hydraulic lifts on transportation vehicles. Roberts was even denied a job by California’s Rehabilitation Services because he was considered “too disabled.”
There were many other hurdles for Roberts to overcome. However, his hard work paid off when California Governor Jerry Brown offered him a job in his cabinet as Commissioner of Rehabilitation Services! Roberts’ tenure in Brown’s cabinet led to the creation of the World Institute on Disability, a world public policy center.
The Independent Living Movement is, in the words of David Hancox, MCIL’s executive director, “one of the last great civil rights movements.” Indeed, the fire fueling Roberts and other activists during his time was sparked by the concurrent civil and women’s rights movements, both of which had themes similar to those of the disability rights movement. Unlike the other two movements, however, the disability rights movement had something that is lending cohesion to the movement to this day: no boundaries. “Disability know no boundaries based on economics, age, or gender it crosses all boundaries,” says Hancox. “At one time or another, it touches us all.”
MCIL’s first director, Walt Seibert, described MCIL’s formative years, saying, “There was passion, and there was commitment. We were proving to the funding community that we were more than some program of the federal government. We knew where we were going and how to get there. We had an extremely committed staff. It was not unlike the anti-war effort of the 1960s. We had a commitment to an ideal, without having it occur at the expense of anyone else.” Seibert is currently a major gift and planned-giving officer at Courage Foundation.
The Origins of MCIL
MCIL’s origins were as a grassroots movement among people with disabilities in the community. Those involved wanted to make available consumer-driven, community-based resources that would represent an alternative to the existing system and prevent unnecessary out-of-home placements of people with disabilities. The goal was to help people with disabilities find their own voice, power, and advocacy.
The center opened its doors in the spring of 1981. There are now 500 Centers For Independent Living (CILs) across the country, with eight in Minnesota all independent nonprofit organizations. Ninety percent of MCIL’s board and 80 percent of its staff are people with disabilities. “Our board and staff believe people with disabilities need to be in the driver’s seat,” said Hancox. MCIL places no limitation on the type of disability the organization serves, and no age limit. It offers services that are consumer-driven. Referrals are another valuable service offered by MCIL. Hancox said his staff strives to partner with the community, not represent them, encouraging those who seek help to lead more self-directed lives.
When asked what he thinks the Center’s most successful accomplishments have been over the last 20 years, Hancox said, “We’ve been very successful at raising the general profile of people with disabilities, and at raising awareness that people with disabilities have a right to be in control of their own lives.” He said the center has also been very successful with other partners in the community at raising the debate on a multitude of issues, including education, employment, transportation, housing, and general services.
MCIL’s offers a wide range of programs and services, including: independent living skills training; peer support networks (one-on-one mentorship); information and referral; individual systemic advocacy (work to promote public policy change); a ramp project, which installs low-cost modular-designed ramps to people’s homes and coordinates with contractors; a personal care attendant program; a transition program for youth ages 14-22 (e.g., individual living skills); ADA technical assistance; and outreach to specific groups (e.g., Latino/Chicano, gay, lesbian, bisexual, and transgender disabled people).
Hancox said MCIL will continue to expand its abilities to meet the growing consumer demands for individual advocacy and direct service. He said it will also continue to assist individuals in their efforts to move out of nursing home settings, and it will work to expand its PCA program (one the few in the state that is consumer-driven). MCIL is also working with the seven other CILs in Minnesota to achieve a statewide network of centers and services, and he said the organization hopes to see a second center in the metro area in the near future.
“Additionally, we are currently seeking funding supports to establish a more useful, meaningful, and state-of-the-art technology lab for consumer education and individual use,” said Hancox.
Part of a Movement
When he thinks of the overall disability movement over the last 20 years, Hancox said he feels the de-institutionalization movement has been the greatest achievement. Prior to the 1960s, many people with disabilities were confined to institutions run by people who had little knowledge or understanding of disabilities, were lumped together with criminals and other “undesirables” (and classified within ignorant terminology that only served to perpetuate stereotypes and falsehoods about them), and were often grossly mistreated and abused.
A combination of increased life expectancies, new legislation, and activism slowly chipped away at the belief that people with disabilities had to be separated from the rest of society. The Supreme Court’s 1999 Olmsted Decision is helping to remove people with disabilities from institutions and integrate them back into the community. Nevertheless, said Lolly Lijewski, an advocate at MCIL, “Minnesota has done a lot of work on health care, but we don’t have the housing available to get people out of nursing homes.” She said many organizations are now coming together to advocate for this.
One piece of new legislation that made an enormous difference in the lives of children with disabilities was the Individuals with Disabilities Education Act (IDEA),passed in 1975, which assured the right of disabled children to receive an education in the least restrictive environment possible (i.e., with other children without disabilities). Other significant laws that have passed include the Air Carriers Access Act , which passed in 1986and assured that people with disabilities receive consistent and nondiscriminatory treatment when traveling by air, followed by the Federal Fair Housing Act, passed in 1988.
It wasn’t until 1990 that the Americans with Disabilities Act (ADA) was passed into law. According to Hancox, there is still the misperception that the ADA is a “quota bill of special rights. This is a major piece of civil rights legislation,” he said. “It has evidenced a true collaborative approach to disabilities. This legislation has tremendous power.”
Lijewski, who has written a column in this newspaper about disability culture for four years, got involved with MCIL by volunteering to train people on ADA-related issues. She explained that within the ADA, there were “phase-ins”, wherein different portions of the regulations were phased in during the 1990s. Lijewski’s job was to help organizations that had to comply with the regulations understand when they would need to comply with the new rules.
Far beyond her volunteer role, Lijewski became a class representative in a 1993 class action lawsuit against the Twin Cities’ paratransit system, called Metro Mobility. She explained that after people from out of town were brought in to run a Regional Transit Board (which no longer exists), the paratransit system “fell apart in days. These people didn’t know the area or the disability community. I waited five hours for my ride the first day. People got left behind. Someone with Alzheimer’s got lost by a driver.” She said National Guard members were placed on each van, which helped stabilize the system.
“As a result of this, the community came together and we filed a class action suit,” Lijewski said. She points out that MCIL provided the foundation from which the action was taken, with the group being represented by two law firms: one from Minneapolis and the other from Saint Paul. Although MCIL wasn’t directly involved in the lawsuit, it provided some much needed behind-the-scenes work, like documenting complaints through a hotline, and letting the group use the Center for press conferences.
The suit was settled in 1994, without ever going to court. The provider that had been brought in from out of town left, because it couldn’t honor the contract, said Lijewski. The Regional Transit Board was dissolved by the Legislature, with Metro Mobility’s management being handed over to the Metropolitan Council.
Lijewski applied to MCIL for an advocacy position doing systems and public policy work in 1995. Since then, she says one of the most significant pieces of legislation has been the Ticket to Work and Work Incentives Improvement Act of 1999. This act provides grant money to support state efforts to improve employment options for people with disabilities, and creates authority for each state to develop a Medicaid buy-in program. This program allows people with Medicaid to go to work while still maintaining their benefits; it also allows them to keep their personal care attendants. Previously to this, anyone with a disability who went to work would risk losing their long-term care benefits. Minnesota’s Medical Assistance for Employed Persons with Disabilities (MA-EPD) act essentially did the same thing, and was passed before the national law.
Speaking about the ADA, MCIL Director Hancox said the difficulty in enforcing that landmark civil rights law is evidence of how far society has to go when it comes to the incredible obstacles faced by people with disabilities, in housing, employment (the unemployment rate for people with disabilities is currently about 70%; 45-48% of these people have college degrees), and other areas. “The disability community is singularly the largest minority community in the country, at 52 million,” said Hancox. “That’s one-fifth of the population! If we are ever able to harness the power behind the numbers, we’ll rule!”
An overview of the disability rights movement, especially the one that has been locally grown, wouldn’t be complete without mentioning Charlie Smith, this paper’s former editor. As David Hancox said during MCIL’s anniversary dinner, Charlie’s contributions to the disability community are too numerous to be listed. Charlie was an MCIL board member and he was included in the organization’s annual report with a quote from Jesse Ventura. Governor Ventura, who acknowledged how Charlie had committed his life to advancing the civil rights movement of people with disabilities and founded Access Press, said Charlie “lived by example, with integrity, quiet power, and humor.” These are the qualities that many say are the driving forces behind real change.