Helping Rural CILs Drives Her
By Janine Bertram Kemp
Shes 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, shes 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.
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 Associations 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
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,
In discussions, the group
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 APRILs youth mentoring project,
recalled the organizations 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
cant 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
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.
Lindas 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 doesnt 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
groups latest project: a weight management program for women with
(Gonzales) is tied into so many networks, and that
will be really helpful for us as we set up a community of practice, Nosek
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 APRILs Lifetime
Achievement Award, Gonzales related how she and Jerry had a dream that
didnt 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.