New Initiative: CIL College Studies
By Kathi Wolfe
Susan Menhard, 50, who lives in St. Louis, had always been
into wolves. But until she was in the hospital after becoming a quadriplegic
through a gymnastics accident, she never thought a wolf could be an emotional
lifesaver.
At 43, Menhard was a social worker who worked with
homeless people and competed in national trampoline events. One day, while
practicing on the trampoline, “I opened too early on the last element
… and landed on the back of my head,” she said. “I heard my neck
snap ... (I) severed my spinal cord.”
For the first two and a half years after her injury,
Menhard often wanted to commit suicide. While looking around her hospital room,
she saw what she called the “first turning point” in her change of
heart. “There was a sketch of a wolf on the wall,” she said. “I
used that (drawing) to escape a little bit. It had been sketched by a man who
was as disabled as I am. He had no ability to use his arms.”
Menhard’s second “turning point” came when
she visited Paraquad, Inc., the nationally known independent living center in
St. Louis. There, she met Doug Landis who, using a mouthstick, had drawn the
wolf that had been so life-affirming for her.
“He just happened to roll into the office,”
Menhard said. “It was an instant connection. He just started talking about
things I was so embarrassed about – like needing help with eating and
other kinds of personal care.”
After that conversation, Menhard felt much less humiliated
when she talked about needing assistance with wiping her nose or other intimate
tasks. “I started owning my disability at this point.”
Menhard earned a bachelor's degree in social work from
Southeast Missouri State University in 1983 and a master's from the Brown
School of Social Work at Washington University in 1988. But even with two
social work degrees, she was clueless as to what it meant to live with a
disability until after her injury, Menhard said.
Landis proved to be exceptionally helpful to her.
“You just don’t know what (having a disability) is like until
you’ve been in that person’s shoes,” Menhard said.
Today, Menhard is learning how to teach people with and
without disabilities the professional skills needed to fully understand the
challenges of a person with a disability (PWD). She is a research assistant
with the Disability Studies Initiative, a program offering disability
rights-focused courses (including independent living, disability history,
advocacy and universal design) at Maryville University in St. Louis.
Colleen Kelly Starkloff, director of education and
training of the Starkloff Disability Institute, a St. Louis disability think
tank, organized the initiative. Many colleges and universities offer disability
studies courses, but the curriculum the initiative developed for Maryville
University is believed to be the first of its kind, Starkloff said in a lengthy
telephone interview.
Most courses on disability studies focus on academic
subjects such as disability in literature or in history. What makes the
curriculum she introduced to Maryville unique is its emphasis on the practical
applications of disability rights and history to independent living, Starkloff
said.
“I’m not aware of another curriculum that
focuses on training people to work in independent living centers, non-profit
groups, corporate human resources departments or other settings that serve
people with disabilities,” she said.
In 1970, Starkloff, with her husband, Max Starkloff,
co-founded Paraquad. Colleen Kelly Starkloff does not have a disability; her
husband is quadriplegic. In 2003, the Starkloffs left Paraquad and established
the Starkloff Disability Institute, and in 2005 Colleen started the Disability
Studies Initiative.
Centers for independent living (CILs) grew out of the
disability rights movement, Starkloff said. The aim of the movement was to
“maintain the dignity and advocate for the rights of people with
disabilities,” she said. "The philosophy has been to have persons with
disabilities running the show.”
To ensure this, the majority of CIL leadership positions
– at least 51 percent – should be held by people with disabilities,
Starkloff said.
In the beginning of the independent living movement (in
the l970s and '80s), CILs were much smaller, Starkloff said. “You could go
in with passion – with fire in your belly – and work for disability
rights then. People with disabilities were involved, and their hearts were in
their work. You didn’t need to have so many credentials.”
But over the years, many CILs have changed, Starkloff
said. “A lot of the CILs have become bigger – with larger staffs and
budgets. Fewer of the centers are embracing the philosophy of the disability
rights movement (and) fewer people with disabilities are working in CILs.”
In too many cases, people without disabilities are holding
the majority of leadership positions at independent living centers, Starkloff
said. “Some CILs have lost their souls," she added.
One reason this is happening, Starkloff said, is the
changing nature of the field of disability. Today, directors and staff members
of CILs and other organizations providing disability advocacy and services need
“administrative, advocacy and case management skills,” said
Starkloff, an adjunct faculty member of Maryville University. CILs have had
trouble finding people with disabilities who possess these skills, she said.
Starkloff, in an e-mail, said that she devised the
Disability Studies Initiative because “I am strongly committed to the IL
(independent living) philosophy, to the training of people with disabilities to
work in the field of disability, and because I think the students have much to
gain by having teachers with disabilities in the classroom.”
The Initiative is located in Maryville’s
Rehabilitation Counseling Program, and the seven courses offered constitute a
certificate in independent living, in addition to a bachelor's in
rehabilitation services. The courses range from “The Rehabilitation
System: History, Philosophy, Laws and Structure” to “Independent
Living: Consumer Involvement and Self-Management” to “Case Management
and Independent Living.”
Students who take the courses and earn the certificate in
independent living will be qualified to work in any independent living center
or group serving people with disabilities.
“Max Starkloff is 74 years old,” said Colleen
Starkloff, who is developing a course on universal design for the fall for
Maryville’s Interior Design School. “We need to train the next
generation of Max Starkloffs.”
The initiative’s curriculum, according to Starkloff,
will provide a historical perspective on people with disabilities "going back
to the earliest period of time that we can find -- to the beginning of the
modern disability rights movement in Berkeley and New York to the Americans
with Disabilities Act and today.”
Most of the students taking the independent living courses
now don’t have disabilities, Starkloff said. While teaching these students
is valuable, she said, “we hope more students (with disabilities) will
take these classes.”
In addition to Menhard, the social worker who sustained a
spinal cord injury, Steve Foelsch is part of the Disability Studies Initative.
Foelsch, 44, who became a quadriplegic as a result of a motorcycle accident
when he was 20, is an independent living instructor.
Foelsch, who uses his arms to control his motorized
wheelchair, lives in St. Louis. For years after his injury, he tried to
distance himself from his disability as much as possible. “I consciously
made an effort not to be around disabled people – not to be involved in
any kind of disability advocacy,” he said. “I didn’t want my
disability to influence any decision that I made.”
Foelsch earned bachelor's degrees in history and
anthropology from Missouri University in 1994 and a master of education degree
in 1996. He also has two teaching certificates.
When he moved back to St. Louis after living in Mexico for
a year, Foelsch applied for teaching jobs in the schools. He’d get calls
for interviews, but when he would ask about wheelchair ramps, “I could
hear their voices drop,” he said. “They’d say, ‘You need to
go downtown to human resources.’
“They didn’t want to hire me,” Foelsch
said. “I just kind of laughed. I thought that’s how it was … It
took me a long time to stop being angry at everything.”
After substitute teaching, Foelsch met Starkloff, who told
him about the Disability Studies Initative. Initially, he was reluctant to get
involved with the project because “I didn’t want my disability to
influence any vocational decision that I might make.”
But Starkloff was persistent. “She gave me books like
‘Nothing About Us Without Us: Disability, Oppression and Empowerment”
by James I. Charlton,’ which talked about disability in social, political
and economic terms rather than as a medical condition.”
When you teach, you don’t want to come off as
dogmatic, Foelsch said. “You don’t want to tell your students,
‘Your thinking is all wrong.’ You want to say, ‘Let me show you
another way of thinking.’”
For more information, e-mail Colleen Starkloff at
cstarkloff@strakloff.org or go to
www.starkloff.org.
Kathi Wolfe is a Washington, D.C.-area writer. She
writes frequently on disability issues. |
