American Libraries, Nov 1998 v29 i10 p52(1)
Living well with a disability: how libraries can help.

Julie Klauber.
Abstract: Disabled persons need information to be able to cope with society.
Libraries are helping them through a number of ways. These___ include
providing physically accessible buildings, assistive technolo_gy and
guidance to specialized resources.

Full Text: COPYRIGHT 1998 American Library Association

PEOPLE WITH DISABILITIES NEED INFORMATION TO HELP THEM LIVE, LOVE, LEARN,
WORK, AND PLAY IN THE MAINSTREAM OF SOCIETY

If you discovered that 20% of the people in your community were Chinese,
you'd probably reach out to them - buy Chinese books and magazines, offer
Chinese cultural programs, and provide information about learning English
and becoming a citizen. If your library was located in an artists'
community and 20% of its residents were artists, you'd want to make sure
that your art collection was strong and that your exhibits were
appropriate. If there were many new housing developments in your community
and 20% of the families had young children, you'd probably have lots of
books, magazines, and videos on parenting and you might offer "mommy and
me" programs.

Did you know that approximately 20% of the people in your community have a
disability? People with disabilities constitute the largest minority in the
country, crossing all socioeconomic classes and ethnic groups. According to
census statistics, over 50 million Americans - one out of every five people
- have some kind of disability that interferes with their ability to
perform everyday activities. Of course, you may not notice this many people
with disabilities in your community; disabilities such as hearing
impairments, heart conditions, and learning disabilities are not visible.
Ask yourself what services your library provides for this 20% of its
community.

Every day, people with disabilities are discharged from doctors' offices
and hospitals with a litany of medical precautions and virtually no
practical information about how to get on with their lives. One of the most
important things libraries can do is provide information to help them live,
love, learn, work, and play in the mainstream of society.

Valerie's story

Valerie Lewis is a typical example, and she is a librarian as well at the
Suffolk Cooperative Library System in New York. Valerie became legally
blind when she was 19 years old, the result of complications from diabetes.
Her eye doctor sent her home with an almost useless pair of eyeglasses and
directives about taking care of her diabetes and returning for regular
checkups. She lost her job as a cashier and her newly earned driver's
license. She sat home doing nothing, supported by a single mother who
worked as a waitress in a diner.

Two years later, Valerie's mother noticed a woman in the diner who was
reading a menu with a special pair of eyeglasses that had a small,
binocular-like device affixed to one of the lenses. "Do those glasses help
you read? Where did you get them?" her morn asked. The woman explained that
she was legally blind and that she received the optical aid as well as a
host of other services from the state commission for the blind, an agency
that neither Valerie nor her mother had ever been told about.

Valerie contacted the commission, which arranged for a complete evaluation.
She received optical devices to help her use her remaining vision, mobility
training to help her get around, and rehabilitation training to help her
perform everyday activities independently. The commission paid for her
college education, helped support her graduate studies, and provided her
with a large-print and talking computer to do her work.

Today, Valerie has an MLS degree and a full-time job helping people with
disabilities access reading materials and other library services. She uses
the same computer programs that her colleagues use to search the OPAC, the
Internet, and other reference tools. She travels across the county to
advise public libraries on how they can enhance their services. She does
outreach presentations for community groups, and conducts educational
programs for children in public libraries. Most of all, she connects people
with disabilities to organizations, agencies, books, magazines, videos,
products, and other resources that can help them live independently.

Were it not for an accidental encounter in a diner, Valerie Lewis might
still be sitting home. Unfortunately, Valerie's story is far from unique -
and there are lots of Valeries still sitting home. Libraries can play an
instrumental role in breaking this information barrier by providing good,
positive, practical information to help people cope with disabilities.

A daunting task, even for a librarian

There are many resources that can help individuals with disabilities live
independently. There are government agencies and nonprofit organizations
that provide services to help them live productive lives. There are books
and videos that explain how to design or renovate homes for accessibility.
Specialized travel guides describe accessible accommodations and sights
from Disney World to the Far East. There are materials about finding and
adapting to jobs, parenting children with disabilities (and being a parent
who has a disability), participating in sports, making love, wheelchair
gardening, finding specialized scholarships and financial aid, and
advocating for one's rights. Guides to using computers and adaptive
technology, as well as catalogs from companies that distribute adaptive
devices, help people with disabilities learn about new products for work,
school, and home. Many of these materials are free or inexpensive.

Unfortunately, many people with disabilities (and the health and social
service providers who work with them) are unaware of these resources, and
libraries do not often contain them. Many publications designed to help
people with disabilities are published by small private presses or
nonprofit agencies that lack the funds or expertise to promote them. These
resources are rarely covered by traditional library reviewing sources.

Finding out about them can be daunting, even for a librarian. In 1993, my
husband and I founded the nonprofit organization Disability Resources to
disseminate information about these resources to service providers
throughout the country. The organization's cornerstone publication,
Disability Resources Monthly (DRM): The Newsletter That Monitors, Reviews
and Reports on Resources for Independent Living, is the only one of its
kind. It is currently being distributed free of charge to 2,000 public
libraries in the U.S., thanks to a grant from the Paralyzed Veterans of
America Spinal Cord Injury Education and Training Foundation. Each issue
includes a special collection development guide on spinal cord injury for
public libraries.

In addition, librarians can find out about pertinent resources by getting
on the mailing lists of as many organizations as possible; the Encyclopedia
of Associations and Elizabeth H. Oakes and John Bradford's Resources for
People with Disabilities: A National Directory (Ferguson Pub. Co., 1998)
are good places to start. Wilma Sweeney's The Special-Needs Reading List:
An Annotated Guide to the Best Publications for Parents and Professionals
(Woodbine House, 1998) is an excellent collection development tool for
parent and professional collections in public, school, academic, and
special libraries. Disability magazines such as New Mobility, Mainstream,
Enable, We, Exceptional Parent, and Accent on Living often feature useful
book reviews, announcements, and advertisements.

The Internet is a wonderful source for information about independent
living, and libraries should include appropriate links on their own topical
Web pages. Check "The DRM Guide to Disability Resources on the Internet" at
www.disabilityresources.org for an easy-to-use subject guide to hundreds of
the best sites, a geographical guide to state and local Web sites, and
information for librarians.

First things first: Physical access

Of course, all the information in the world is meaningless unless the
people who need it can get to it. Librarians need to be sure that their
buildings are in compliance with the Americans with Disabilities Act (ADA)
and other regulations, and that the auxiliary aids and services required by
the ADA are readily available. Alternate methods of service delivery such
as homebound programs, books by mail, and fax or e-mail may benefit
individuals who cannot get to the library because of their disability.

Today, assistive technology can help people who could never before take
advantage of traditional library materials. Individuals who are blind or
visually impaired can now read virtually any item in the library with the
help of electronic magnifiers that enlarge print more than 40 times,
machines that read printed matter aloud, and computer hardware and software
that enlarge print, speak, and produce braille.

Of course, the library's online catalog should be accessible, as should at
least one Internet workstation. Since many specialized software programs do
not work well with graphic Web design, libraries should design their own
home pages so that they are easy to use with adapted computers. A list of
sites that provide guidance on accessible Web design can be found at
www.disabilityresources.org/WEB.html.

There are also products to make library resources more accessible to
individuals with physical disabilities, such as page-turning devices,
modified keyboards, and speech input. People who are deaf or
hard-of-hearing can take advantage of informational programs with the use
of sign-language interpreters, real-time captioning, assistive listening
devices, and printed scripts. Good signage is essential for people with
hearing, learning, and visual impairments.

Most important, library staff should receive appropriate training so that
they can interact and communicate comfortably and effectively with people
who have disabilities. Stereotypes, assumptions, ignorance, and poor
disability etiquette can create ill will, and can turn people with
disabilities away from libraries. They can also cause misunderstandings
that may result in grievances, legal actions, and negative publicity.

Some recommended resources are Courtney Deines-Jones and Connie Van Fleet's
Preparing Staff to Serve Patrons with Disabilities (Neal-Schuman, 1995) and
Ray Turner's Library Patrons with Disabilities (White Buffalo Press, 1996).
A new book on assistive technology in libraries by Barbara Mates is
scheduled to be published by ALA in April 1999.

Reaching out

Having information and making it accessible will not alone bring people
with disabilities into the library. Library staff should work closely with
local organizations to let people with disabilities know that these
resources are available. In Suffolk County, such cooperation has resulted
in many programs. For example, the county's independent living center has
conducted programs on the legal rights of people with disabilities and
workshops for parents of children with disabilities. Several Suffolk
libraries have collections of specially adapted toys for children with
disabilities. The local assistive technology center has brought traveling
collections of such toys to other libraries on a rotating basis.
Cooperation with a regional telephone company resulted in an ongoing
service that brings people who are deaf or hard-of-hearing to local
libraries to borrow special telephone equipment.

People with disabilities represent a significant proportion of every
library's constituents. With appropriate information, accessibility, and
outreach, libraries can and should help these individuals bridge the gap
between surviving and thriving.

Quality of Life

Libraries can make a difference by offering:

* Physically accessible buildings.

* Staff trained to interact effectively with people with disabilities.

* Assistive technology.

* Guidance to specialized resources.

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