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Cover Story

Helping Rural CILs Drives Her

By Janine Bertram Kemp

She’s a braniac with gorgeous blonde hair and deep red lipstick. In these, her middle-age years, she still can turn heads. She is well dressed and moves through the world in her power chair. Linda Gonzales is also softspoken -- more of a doer than a self-promoter.

Gonzales is a leader who likes to anticipate issues. She sees problems coming and offers answers. She has been looking at the potential funding crisis for centers for independent living (CILs) and is primed to find solutions. She writes a blog for the Independent Living Research Utilization New Community Opportunities Center in Houston, Texas, that focuses on CILs. If your CIL wants to shore up its funding base because of recent or impending budget cuts, she’s got the time and inclination to help you execute workable plans that focus on local resources and community foundations as well as more traditional state and federal opportunities.

In national disability rights history, Gonzales is to rural independent living what Ed Roberts was to urban independent living: its founder. As director of the Association of Programs for Independent Living (APRIL), she got the organization on a firm footing and was the driving force behind its reputation as an innovator.

Gonzales became involved in the disability rights movement as a consequence of graduate school. She graduated in 1981 with a master of arts in education, educational psychology, and guidance counseling from California State University at Northridge, Calif. She had been working on her thesis on the psychosocial needs of people with muscular dystrophy at the same time as her own MD was worsening.

Linda Gonzales“For many years, I had a diagnosis and a hidden disability,” she said. “The last twenty years, it moved to the lower part of my body, and I eventually ended up using a reclining power chair.” In order to conduct research for her thesis, she attended the Muscular Dystrophy Association’s summer camps. She could have attended as a camper or an assistant.

“I met some wonderful people at MDA camp, including a gal who worked at Westside CIL in Los Angeles. She talked about the philosophy of IL, and it was similar to my conclusions. It was 1980, and I felt like I was building independent living all on my own. She said there was a movement that exists. I got my degree and became a peer counselor at WCIL. June Kailes was my first boss.”

Gonzales moved to New Mexico in 1982 as the New Vistas CIL in Santa Fe was being formed and remained there until 1993. In 1987, she married her husband, Jerry. Gonzales began work as an outreach worker, driving her van across the nine easternmost counties in the state. Crisscrossing the rural areas in that section of New Mexico, she got a feel for the values and the cultural and religious issues that affected the people with disabilities who lived there.

She eventually became a counselor and then executive director at New Vistas CIL. In 1986, ILRU began looking at how rural CILs were doing and, with funds secured from a grant, brought together directors from 12 states for a three-day meeting in Houston.

“Twelve of us got together and fell in love with each other,” Gonzales said. “Each of us had been feeling like we were the only ones. We found out that so many of the things we experienced were similar: mileage reimbursement checks larger than our paychecks, huge catchment areas (the CILeligible population in that region), lower funding, isolation.”

In discussions, the grApril - Association of programs for rural Independent Livingoup concentrated on NCIL because of its national profile. Although the National Council on Independent Living had a rural subcommittee, its orientation was mostly urban. APRIL was born out of the idea that it would be helpful to have an organization that focused on rural issues.

“In the late 1980s, we started meeting, and some were held at the NCIL conference,” Gonzales said. “Word grew that we were factioning the movement, starting a different organization, that we were not really CILs. Things were pretty tense for a time.” Social documentarian Tom Olin, who worked with Gonzales on APRIL’s youth mentoring project, recalled the organization’s controversial beginnings. “For a time, there was discord between NCIL and APRIL,” Olin said. “Linda Gonzales never fed those fires of division. She kept APRIL running for a long time with very little money, and that is not the easiest thing to do.”

Tom Seekins, director of the Research and Training Center on Disability in Rural Communities at the University of Montana, has been a colleague of Gonzales since 1993.

“When the Rural Institute was funded, Gonzales came and advocated that our center address independent living issues,” he said. “It was originally intended to address medical, rehabilitative and assistive technology. It took an advocacy effort to change that. We had to work through it, and we did.

“Linda made a significant contribution to the disability rights movement when she took a gamble on rural independent living,” Seekins continued. “She had a secure position as director at the Santa Fe CIL. She was doing great things, but for some reason she saw the need for a focal point on rural disability issues and took on the responsibility to be that organizing force for APRIL. Linda took that risk with no funding and not many resources except the trust and commitment of other CIL directors around the country.”

Gonzales tells the same story with a slightly different twist. “At about the same time we organized, the University of Montana got funding for the Rural Institute on disability. At APRIL, we said, ‘They can’t be talking about these issues without having us involved.’ We struggled for a few years. Then the Department of Education gave us a fiveyear demonstration project to implement a transportation voucher system, and that allowed us to build the infrastructure and hire staff.”

With the grant, which came in 2001, Gonzales focused on transportation. “It was a huge stumbling block for everyone out there in rural areas,” Gonzales said.

During the George W. Bush presidency, APRIL led the struggle that convinced the Federal Transit Administration that transportation vouchers were a legitimate use for New Freedom Initiative funds and should be specified in regulations.

“I admired her so much,” Seekins said. “APRIL was a small organization, struggling to survive. She held it together and led the organization to the point (that) it became vibrant.”

More than 15 years after Gonzales launched APRIL, she is entering a new phase of life. She writes a blog for ILRU and is on the Consumer Advisory Board for the Center for Research on Women with Disabilities (CROWD) at Baylor College in Houston, founded by colleague Margaret Nosek.

“Linda and I go way, way, way back,” Nosek said. “I first met her when she was director of New Vistas CIL in Santa Fe. Much later, we discovered we both grew up in Cleveland and our mothers dragged both of us to an MDA clinic at University Hospital.

“Linda’s impact is interpersonal,” she continued. “She is a dynamic individual but subtle. Linda relates to people with disabilities on a personal level. She can bring rural issues and independent living from the personal to the political. She can go from the individual and turn it into valuable information and opportunities for people to come together and work.

“Her best vehicle was as director of APRIL. That gave her both a platform and vehicle to affect many lives. She doesn’t let anything stop her. For some whacko reason, she has landed in Colorado where, because of the altitude, she has to use oxygen. Yet she still continues her work. She is still bringing all that same energy, expertise and camaraderie, and she is excited in her low-key way.”

CROWD has done extensive research on women with disabilities, and Nosek is looking forward to working with Gonzales on the group’s latest project: a weight management program for women with mobility impairments.

“(Gonzales) is tied into so many networks, and that will be really helpful for us as we set up a community of practice,” Nosek said.

In the early part of this decade, the Gonzaleses got caught in the early stages of the housing crisis bubble and left Ohio in a motor home they called Grace. They had expected to have funds from selling their Ohio home and figured that Grace would be the vehicle in which to sample different areas until they found a spot to settle down in their retirement dream home. But the recession left them without that nest egg.

In a speech called “Lessons Learned Living in Grace” that she gave on the occasion of receiving APRIL’s Lifetime Achievement Award, Gonzales related how she and Jerry had a dream that didn’t pan out. Perhaps her work with CROWD to find solutions for CILs will be the conduit for making another dream come true.

Janine Bertram Kemp is a writer, advocate and president of the Disability Rights Center. She also is a member of ADAPT.

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