Communicating at the End of the Twentieth Century: Innovative Computer
Programs
1999
by Steve Brown
COMPUTERS: BARRIERS OR BARRIER-BUSTERS?
During the past fifteen to twenty years, computers have become a part
of our daily lives. Many of us could not imagine life without them. But
for others, computers are problematic for reasons ranging from expense,
to fear of learning how to use them, to built-in and added access barriers.
This paper discusses how two (2) centers for independent living (CILs)
approached the dilemmas and opportunity of computers to develop innovative
programs that could become models for other CILs.
THE CILs
The two CILs are located in diverse environments. One, MetroWest Center
for Independent Living (MCIL), is in Framingham, Massachusetts, a suburb
of Boston. MCIL is one of many CILs in the Boston metropolitan area. The
second, Pathways for the Future, Inc. Center for Independent Living (Pathways)
serves seven counties in rural western North Carolina.
THE BARRIERS THE CILs PERCEIVED
Despite their differences, both CILs saw a need and an opportunity to
use computers to help people with disabilities further their independent
living goals. MCIL believes that computer technology has the potential
to assist a CIL in its purposes of information-sharing, obtaining knowledge
about rights and services, peer support and mentoring and community building.
Paul Spooner, MCIL executive director, reports that their project, Access
to Information, resulted from MCIL's observation of changes in computer
technology over the past ten years. During this time, MCIL has been extensively
involved in the world of computers, even serving as one host site for
the DIMENET computer network.
During the past decade, MCIL observed that the rapid advancement of computer
technology has caused problems for many individuals with disabilities.
In the early computer days of text-based environments, computers were
user-friendly for most people with disabilities. But with the phenomenal
development of windows, icons and the Internet, both the graphic environment
and the additional costs of new computer technology pose obstacles to
use, especially for people with visual and learning disabilities. While
computers are more accessible to many people today, the cost of adaptive
equipment increases, sometimes even doubles, the cost for individuals
with disabilities to use computers. Add to this mix the sometimes high
cost of Internet usage and the age of computers becomes an unattainable
one for many people with disabilities.
While MCIL struggled with the changes in a developing computer technology,
Aimee Speers, program director for Pathways, relates that her CIL had
difficulty covering a large service area in which it can take up to two
hours to travel to a border. Pathways began their CyberPals program to
increase the speed with which they could contact consumers.
THE PROGRAMS
MetroWest decided that Access to Information would be used to provide
the following services to both individuals with disabilities and the general
public:
1. Low-cost, fully accessible access to the Internet and the World Wide
Web.
2. Free computers through a community-based recycling program.
3. Accessible Web page design and hosting.
To fulfill the above goals, MetroWest developed an internal business
plan to sell their board on this project. MCIL believed that their CIL
needed to look at their project from a business perspective. In order
to complete the preceding goals, MCIL believed they must become an Internet
service provider (ISP). The primary obstacle to this objective was cost.
MCIL needed to obtain funding to purchase and acquire a UNIX based system,
more phone lines and additional computer hardware and software, including
Apache Web hosting software to provide fully accessible Web page design.
An increase in state independent living funds enabled MCIL to use federal
dollars for these acquisitions. When negotiating with federal and state
funding sources, MCIL has always presented this project as one that would
eventually become self-sufficient. In addition to the above funds, MCIL
also applied for and received funding from their local Community Development
Block Grant (CDBG) program to begin their computer recycling program.
Pathways' CyberPals has a very different focus than MCIL's Access to Information.
CyberPals is a program that places computers in the homes of people with
disabilities and connects them to each other via the Internet and e-mail.
The program began initially as a service of the Charlotte Institute of
Rehabilitation called Virtual Buddies. The Pathways service area became
the first to receive computers in the Virtual Buddies program when six
computers were placed in western North Carolina. Interest in the program
expanded more quickly than the availability of computers. This led to
the creation of CyberPals.
Pathways has placed sixty-seven (67) additional computers and begun its
own listserv so that the CyberPals could communicate with one another.
Fifty-three (53) people remain on the listserv. Fourteen (14) of the CyberPals
were so overwhelmed by the amount of information they received on the
listserv that they chose just to receive private e-mail.
RESULTS
MCIL uses their 501(c)(3) status to encourage individuals and organizations
to donate computers to the recycling program. These computers are then
repaired, upgraded, and given to consumers at no charge. During its first
year, MCIL recycled ten computers. CDBG has doubled MCIL's funding for
their second year. Expectations are at least twice as many computers will
be recycled into the community.
MCIL invested approximately $40,000 in hardware, software, training and
related costs over a two year period. During the first year of the program's
operation, MCIL has had yearly operating costs of $10,000-$12,000. At
the same time, MCIL has generated about $5,000 in fees for Web page design,
Internet access and hosting of Web pages. This has been accomplished through
word of mouth and minimal outreach. They have also hired two staff people
to train, repair computers and serve as Webmaster. Consumers are also
taught basic computer skills and how to surf the Internet. MCIL expects
to promote the plan in the future to civic groups and through a national
mailing to CILs and other disability groups.
CyberPals has become a support system in and of itself. It also enables
Pathways to reach consumers and provide services. People can be informed
of events--such as legislation and upcoming activities-- quickly. Pathways
has even played an ADA trivia game with e-mail and used their computer
networking to provide peer counseling. Some Pathways consumers find peer
support through the distance of the computer more comfortable than the
more traditional direct contact.
After communicating via e-mail for a few months in the summer of 1997,
participants in the CyberPals program decided they wanted to meet. This
led to a monthly covered dish dinner meeting bringing together 30-35 people
each month. The group elected a president who makes announcements, brings
up issues or concerns and introduces new people. The group meetings also
allow people on the computer waiting list (currently 32) to talk to people
who are already online and learn how it can improve their lives once they
too have online access.
The program has no funding. CyberPals is made possible by volunteers.
The first volunteers came from local county computer users groups. Later
volunteers discovered the program through newspaper articles, a local
county volunteer center, and word of mouth. Computers are donated. Individuals
are the biggest source of donated computers, but computers are also received
from businesses, hospitals and schools. Volunteers get the computers working,
place them in consumers' homes, and provide training and technical support.
On line service is provided at a reduced fee when necessary. Many of the
consumers have volunteered to provide training and technical assistance
to new users. When consumers come in to learn about CyberPals, they also
learn about other CIL programs.
COMPUTERS AND CILS
MCIL and Pathways have taken different routes to demonstrate that computer
technology can have a long-range and an immediate impact on CILs. Each
has used computers to do exactly what CILs have always been designed to
accomplish: bring people with disabilities closer together so that we
can offer each other peer support and the kind of information that may
enhance our ability to effect change to improve the quality of our lives.
FOR MORE INFORMATION
Paul Spooner
MetroWest Center for Independent Living, Inc.
63 Fountain Street, Suite 401
Framingham, MA 01702
508.875.7853 (V/TDD)
508.875.8359 (Fax)
EMAIL: pspooner@mwcil.mcil.org
Barbara Davis
Pathways for the Future, Inc.
Center for Independent Living
525 Mineral Springs Drive
Sylva, NC 28779
828.631.1167 (V/TDD)
828.631.0274 (Fax)
EMAIL: pathways@main.nc.us
Kathleen Kleinmann
Tri-County Patriots for Independent Living
69 East Beau Street
Washington, PA 15301
724.223.5115 (V)
724.228.4028 (TDD)
724.223.5119 (Fax)
EMAIL: kleinman@tripil.com
www.tripil.com
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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