PEER COUNSELING: Advocacy-Oriented Peer Support Part One
1999
by Steve Brown
In the Beginning
Ed Roberts rolled onto the campus of the University of California at
Berkeley (UCB) in the fall of 1962. Ed acquired polio as a teenager. He
became a quadriplegic who used a ventilator to breathe during the day.
At night he slept in an iron lung. He has long been considered the first
person with this kind of severity of disability to attend an American
college campus. When Ed enrolled at UCB the college administration did
not know where to house him. After much discussion everyone agreed that
Ed would become a resident of Cowell Hospital, the on-campus health center.
From Cowell Ed attended classes. At Cowell he did homework and entertained
visitors. While other students lived in dormitories, Ed resided in the
hospital.
Two years later a quadriplegic named John Hessler became the second student
with this level of disability to stay in Cowell Hospital. Ed and John
became friends. During the next few years more students with disabilities
came to UCB and joined Roberts and Hessler in Cowell Hospital. They lived
together and studied together. They played and fought like other students
in other group settings. Living in a hospital meant they were different
than the remainder of the UCB student body. Though they were happy to
be at UCB, they were not pleased with having to live in a hospital. How,
they wondered, might they change their situation? Living together at Cowell
gave them the opportunity to talk with each other on a daily basis. The
more they talked, the more intense their desire became to change their
environment.
This group was not alone in this desire. In Berkeley, as on numerous
college campuses in the 1960s, many students wanted to change the conditions
of their lives. Students upset with the dictates of the UCB administration
began to rebel. Their efforts became known as the Free Speech Movement.
Other students participated in the Civil Rights Movement. Still others
became involved with women's rights and Chicano rights. An atmosphere
of activism and change saturated the Berkeley campus. The students with
disabilities at Cowell participated in many of the other movements. They
believed the issues they protested were important. But they eventually
began to wonder about their own circumstances. They started to plan together
to make change occur. They even gave themselves a name, "The Rolling
Quads."
Learning About Each Other
The Rolling Quads questioned their living situation. Why were they forced
to live in a hospital? There were many answers to this question. Dormitories
on campus were not accessible to people using wheelchairs. University
administrators expressed concern about students with disabilities becoming
ill and needing immediate care. Where better to have access to medical
attention than in a hospital? The Rolling Quads used personal assistants
or attendants. There was no provision for personal assistants to share
dormitory space.
The Rolling Quads also brought up other topics. They could not move freely
around the city of Berkeley. There were no curb cuts to go from one sidewalk
to another. No transportation existed to move wheelchairs from one destination
to another. There were no apartments or houses available that could accommodate
a wheelchair if a student wished to move off-campus. If a student's wheelchair
broke down there was no place to go to get it fixed.
Talk Becomes Action
The Rolling Quads talked about all of these problems. They decided to
work together to advocate for their needs. Meetings were arranged with
University administrators. A decision was made to create a campus office
to fix these problems. The resulting Physically Disabled Students Program
became the nation's first Disabled Students Office.
Talking about and working on these issues took several years. Many of
the Rolling Quads were ready to graduate from UCB. They wondered what
they would do after student life. To plan for the future they devised
a course called "independent living." In this class they discussed
how to improve conditions for people with disabilities in the city of
Berkeley, just as they had done with the University. At the same time
some money became available from the United States government to assist
students with disabilities. The UCB students applied for the money. They
did not get it. But they did not give up. They applied again. The second
time they were successful. Building on their "independent living"
course they started an off-campus office they called The Center for Independent
Living or CIL.
Around The World
The Berkeley students acted on their own initiative, but they were not
alone in their actions to champion disability rights. Similar groups were
meeting all around the world. In Boston, Massachusetts, a group of students
and community members started a self-help center for people with disabilities.
In African countries, young people with disabilities began to meet with
each other and talk about how they could improve their lives. In Helsinki,
Finland, students formed Threshold, an organization which began to obtain
services for students with disabilities. The same year the Berkeley students
began CIL, Threshold also became an independent living center.
None of these groups knew about one another in the 1960s. They were all
part of a worldwide movement to get equal rights for people with disabilities.
In the 1970s they began to meet each other.
Peer Counseling
The Rolling Quads and the other groups around the world were peers. This
meant they had similar life experiences. Quadriplegics in Berkeley faced
the same kind of barriers that wheelchair users in Finland found. Blind
students in the United States encountered similar difficulties as blind
students in other parts of the world. People with lots of different kinds
of disabilities started speaking to each other about their conditions.
Deaf people learned that people with mental retardation had communication
problems just like they did. Some people had disabilities that could not
be seen, like epilepsy or dyslexia. Barriers existed for them as well.
For example, sometimes if a disability could not be seen other people
did not believe it existed.
All these individuals with disabilities discovered that they had common
stories. One of the most important conclusions resulting from these talks
concerned who to turn to for advice. For years most people believed that
doctors and psychologists and social workers and others in the "helping"
professions possessed the best information about disabilities. They were
the experts. Individuals with disabilities began to disagree. Did a doctor
know more about the reality of their daily lives than they did. They didn't
think so.
Doctors and the other "experts" knew about the condition of
disability. But many times they knew little about living with a disability.
The Rolling Quads and their peer groups around the world came to believe
that they knew more about life with a disability than the experts. They
decided that the experts about their own lives were really themselves.
This viewpoint changed their way of looking at the world. If people with
disabilities were their own experts then they should be the ones to speak
with one another about living with a disability. They believed they were
the persons most qualified to teach about their experiences to other disabled
people. They counseled other people about living with a disability. They
began to call themselves peer counselors. Many believed that peer counseling
established a foundation of their work to change the world.
From Peer Counseling to Peer Support
The Center for Independent Living in Berkeley became one of many disability
rights organizations. In the late 1970s the United States government funded
a group of independent living centers. All used peer counselors. Some
people did not like this term. Sometimes counselors were thought to be
people who had gone to school and earned a counseling degree. Other times
people thought they or someone they knew needed a professional counselor
to analyze complicated issues. These were some of the reasons that some
independent living centers stopped using the term "peer counselor"
and started calling the sharing of life experiences "peer support."
Whichever term people used, sharing life experiences with each other continued
to generate momentum to eliminate barriers.
Advocacy Oriented Peer Support
To advocate means to encourage change. The Rolling Quads and the other
groups mentioned all advocated to make life better for people with disabilities.
They chose to do so because they wanted to improve their own lives and
the lives of those around them. They learned about one another's lives
from sharing experiences. This is advocacy oriented peer support.
As these groups started organizations they developed models of peer support.
Centers for independent living shared with one another aspects of these
models. People taught courses about many aspects of peer support, including
training to become a peer supporter and how to manage peer support activities.
Manuals became available to help independent living centers create peer
support programs. Training curriculum usually included information about
different disabilities, how to communicate more effectively, and exercises
to help people listen better to each other.
Three Examples of Peer Support as Advocacy
A southwestern center for independent living chose to make a one-day
peer support training an example of how shared life experience could become
a shared advocacy experience. During the first part of the day facilitators
discussed communication skills, definitions of peer support, and the development
of peer support. The attendees then broke into smaller groups where they
talked about issues that bothered them. The smaller groups then each chose
one issue. A facilitator then led each group somewhere in the community
to advocate for change about the issue they had chosen.
One group traveled to a hotel that had installed a ramp with a killer
slope. The hotel management tried to explain why the ramp worked. In exasperation
one woman transferred from her wheelchair to another seat. She then asked
the manager to sit in her wheelchair and use the ramp. He tried but could
not do so because he was scared. He immediately began to work to modify
the ramp. Another group went to City Hall. They met with city management
to request sign language interpreters at City Council meetings. They let
the management know that if interpreters were not at Council meetings
soon, they might use other methods, such as petitions or demonstrations,
to continue to advocate for interpreters.
The second example begins with a group of citizens in the Denver area.
They wanted to travel by bus but could not because the buses did not have
wheelchair lifts. They began to demonstrate. They even sat in front of
buses so the bus had nowhere to go without running over the disabled person.
In a few years the city of Denver had wheelchair accessible buses. The
group called themselves ADAPT, and they attracted people from all over
the country--and then the world--who wanted to make change. They began
to have street actions like the ones in Denver in other cities. Today
ADAPT demonstrates to advocate for increased personal assistance services
so people with disabilities do not have to live in nursing homes. At an
ADAPT demonstration, dozens and sometimes hundreds of people with disabilities
get to share life experiences with each other on city streets. ADAPT demonstrators
shout slogans about what they want to change and why. The immediacy of
these demonstrations encourages people both to share life stories and
to create them at the same time.
The third example occurred overseas. An American advocacy organization
opened a sister office in Budapest, Hungary, in 1994. The two planned
several annual conferences, beginning in 1996. At the first conference,
Hungarians with disabilities were so reserved they barely spoke until
the final day of the meeting. In 1998, the third annual conference moved
to Gyor, Hungary. Conference topics included peer support and advocacy.
Small groups met to discuss these concepts. The energy of the groups spilled
over into the development of a spontaneous demonstration.
While touring the shopping plaza near the conference hotel, attendees
discovered that there were virtually no accessible shops or restaurants.
It so happened the conference coincided with the European labor holiday
of the 5th of May. Conference participants decided to organize a demonstration.
First, permission was obtained from the police, then the press was contacted.
The group gathered first in front of Centrum, a chain department store,
and asked to speak to the manager. He would not comply, so many wheelchair
users wheeled over the one step into the store and started infiltrating
both floors with their presence. Store customers expressed astonishment
at seeing this group of customers. Demonstrators vacated the store, but
not the plaza. Numerous pictures in front of other inaccessible locations
were taken. For many the demonstration remained the highlight of the conference.
In only a few years these Hungarians had evolved from not wanting to discuss
their situations to bringing a group of people together for a mass demonstration.
These are only three examples of many that could be used to describe
advocacy oriented peer support. They show what is most important about
the concept. Life experience is shared and used to make change. Why else
should a center for independent living exist?
Steven Brown
Institute on Disability Culture
Center on Disability Studies
University of Hawai'i
1776 University Ave., UA4-6
Honolulu, HI 96822
SBrown8912@aol.com
http://hometown.aol.com/sbrown8912/
About the Author
Steven E. Brown is currently a Resident Scholar
at the Center on Disability Studies, University of Hawaii at Manoa. Brown,
founder, Institute on Disability Culture (IDC), earned a doctorate in
history from the University of Oklahoma. He directed an independent living
center in Oklahoma, organized numerous community coalitions, and served
as training director at the World Institute on Disability Research and
Training Center on Public Policy in Independent Living. He founded the
not-for-profit Institute on Disability Culture with his wife, Lillian
Gonzales Brown, in 1994. Since then he has become an internationally sought
speaker, trainer, and writer.
Brown's publications include dozens of articles and the books Independent
Living: Theory and Practice, which has been translated into several
languages; Investigating a Culture of Disability: Final
Report, the result of a prestigious Switzer Fellowship from the
National Institute on Disability Rehabilitation and Research of the Department
of Education, the first funding of its type for research into the field
of Disability Culture; A Celebration of Diversity:
an Annotated Bibliography about Disability Culture, Second Edition;
and Celebrating Passion, Relentlessness, and Vision:
the Manifesto Editorials. An award-winning poet, Brown has published
five books of poetry, Dragonflies in Paradise: An Activist's
Partial Poetic Autobiography; The Goddess Approaches
Fifty: Poems; Love into Forever: a Tribute to
Martyrs, Heroes, Friends, and Colleagues; Pain,
Plain--and Fancy Rappings: Poetry from the Disability Culture;
and Voyages: Life Journeys.
In recent years, Brown has conducted writing workshops and residencies
with groups of all ages, especially with middle and elementary school
students. He has written a children's biography about disability rights
pioneer Ed Roberts, distributed a monthly online newsletter and continued
to publish articles about disability culture and disability rights in
a variety of publications. He has conducted trainings throughout the United
States and Europe on a variety of disability related subjects.
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