by Rachael Zubal and Steve Drake
NOTE: The information posted here was inclusive as of 1996. Although it has not been updated, it may contain information that continues to be extremely useful to people who are concerned about supports and services for people with disabilities. Please contact us if you would like updated information on this topic.
The Center on Human Policy periodically produces resource reviews on a variety of topics; this article highlights some of many types of information that can be found on the Internet concerning people with developmental and other disabilities. Since there is a rapidly expanding amount of information related to disabilities available on the Internet, this is a selective, rather than exhaustive, compilation of resources that we have found to be useful and informative. We include resources and information available on: (1) electronic mailing lists and listservs; (2) newsgroups; and (3) world wide web pages.
ELECTRONIC MAILING LISTS AND LISTSERVS
Electronic mailing lists and listservs are discussion and information-sharing groups that concentrate on a specific topic area. To participate in a particular list, you send a message with a request to a specific e-mail address (see examples below) and you will then be “subscribed” to the list. Becoming subscribed to a list means that you can send a message to one e-mail address and reach all the other individuals who are subscribed to that list. You also receive any other mail sent to that address. Most electronic mailing lists send a confirmation of your subscription request, and details on the policy and philosophy of the list as well as instructions on how to contribute.
Justice for All – Justice For All and the JFA E-Mail Network were formed to defend and advance disability rights and programs at the federal level. JFA works with national and state organizations of people with disabilities to get the word from Washington D.C. out to individuals in the grassroots of disability rights. This e-mail network is moderated, which means that only those messages that are considered to be the most important are distributed. An important source of current information.
To subscribe to Justice for All, send an e-mail message to: majordomo@mailbot.com with the following in the body of your e-mail message:
subscribe justice
Advocacy – This is a broad-based listserv whose subscribers include people with disabilities, parents, service providers, and other individuals concerned with advocacy efforts related to disability. The traffic on the list is light to moderate. This is recommended for anyone interested in ongoing discussion of advocacy issues.
To subscribe to Advocacy, send an e-mail message to: listserv@sjuvm.stjohns.edu with the following in the body of the message:
subscribe advocacy
GnarlyBone – The purpose of this semi-regular on-line “newsletter” is to support and promote disability activism and culture, to connect people with each other, and to have some fun. The information on this Internet newsletter is gathered and disseminated with the idea that it will assist people with disabilities and their allies to take action. “All activism is significant, from making a phone call to organizing a mass demonstration. Get on board!”
To subscribe to GnarlyBone, send an e-mail message to Cheryl Marie Wade at GnarlyBone@aol.com.
Speak-Up – This mailing list is coordinated by Northamptonshire People First in the United Kingdom and is a private list for self-advocates to talk with each other.
Usupport – This is a second mailing list coordinated by Northamptonshire People First where both self-advocates and people who support self-advocates can talk with each other.
To join either mailing list, go to the Northamptonshire People First web page at: http://www.peoplefirst.org.uk/mail.html This portion of their web page has a form you can fill out on-line to be added to these lists.
Health, Wellness and Aging with Disability – This new mailing list is meant to inform people of news items, conferences, web sites, and publications that explore issues related to disability, health, wellness and aging. The traffic on this list is light and submissions are moderator-approved.
To subscribe send an e-mail message to: majordomo@tripil.com with the following in the body of the message:
subscribe hwawd
The Beacon for [dis]Ability – This is an on-line newsletter providing highlights about the World Association of Persons with Disabilities (WAPD), a non-profit, non-political association, and its programs and disability issues.
To subscribe, send a message to: TheHub@wapd.org with the following in the body of the message:
subscribe news
Our-Kids – This list is a “family” of parents, caregivers and others who are working with children with physical and /or mental disabilities and delays.
To subscribe, send a message to: LISTSERV@MAELSTROM.STJOHNS.EDU with the following in the body of the message:
SUBSCRIBE OUR-KIDS
DISABLED – This group aims to examine ways of exploring disability within a social and relational context. This forum aims specifically to focus on the unconscious experiences of disability, as it is socially constituted. This means examining the emotional experience of disability, from the perspective of both sides of the ‘disability’/’ability’ binary.
To subscribe, send a message to: LISTSERV@MAELSTROM.STJOHNS.EDU with the following in the body of the message:
SUBSCRIBE DISABLED
APRAXIA-KIDS – This list is a place where parents who have children with apraxia of speech (also called verbal dyspraxia, developmental apraxia of speech, etc.) can share and learn information and offer ideas and encouragement as they help their children communicate, reach their potential and thrive at home, school, and community life. Additionally, professionals are encouraged to join the list in order to understand the experience of families, learn themselves, and offer helpful comments and understanding from their perspective.
To subscribe, send a message to: LISTSERV@LISTSERV.SYR.EDU with the following in the body of the message:
SUBSCRIBE APRAXIA-KIDS
NEWSGROUPS
Newsgroups are similar to electronic mailing lists in that they are discussion-based forums on specific topic areas. However, newsgroups are accessed through your Internet service provider (ISP) in a way that allows you to send and read messages without having to use e-mail. This has a great advantage in that your e-mail inbox is not overflowing with messages. Connection software and procedures vary depending on your ISP. Some newsgroups that we have found to be useful and informative are:
bit.listserv.down-syn – Contributors on this newsgroup are primarily parents of children and adults with Down syndrome. Discussions and information are highly varied and include research, education, and adult living as just some of the topics that are covered. Overall, this newsgroup is a good source of practical information about people’s experiences. It is also available as a mailing list, but due to the high volume of the mailing lists or newsgroups, we recommend accessing it as a newsgroup.
misc.handicap – This is a very broad-based and varied newsgroup that is literally open to any topic relating to disability. Some of the information can be interesting and valuable.
bit.listserv.ada-law – This newsgroup is a resource for specific applications of the ADA. Many contributors on the list are lawyers involved in litigation regarding ADA violations.
bit.listserv.autism – Parents and professionals are the major contributors to this listserv. Contributors express the full range of opinions on controversial issues affecting people with autism (e.g., inclusion, applied behavioral analysis, facilitated communication).
alt.education.disabled – This is an active newsgroup, often involving heated debates. The most hotly and consistently debated topic is inclusive education. The majority of contributors are educators and parents.
WORLD WIDE WEB PAGES
World Wide Web pages (more commonly called web pages) are multimedia sources of information on the Internet. Below are several disability-related sites that may be of interest. These sites emphasize self-advocacy, inclusion, and civil rights.
Ability Network Magazine
A disability-oriented magazine with articles authored, for the most part, by people with disabilities.
ADA & Disability Information
This site from Iowa State has a great set of links to ADA information on the web as well as other disability-related resources.
American Association of People with Disabilities (AAPD)
AAPD is a non-profit, non-partisan, cross-disability organization whose goals are unity, leadership and impact.
Americans with Disabilities Act (ADA) Technical Assistance Program
The ADA Technical Assistance Program is a federally funded network of grantees which provides information, training, and technical assistance to businesses and agencies with duties and responsibilities under the ADA and to people with disabilities with rights under the ADA. This program also coordinates ten regional Disability and Business Technical Assistance Centers (DBTACs), which provide information and referrals, technical assistance, public awareness, and training on all aspects of the ADA.
The Arc Home Page
This is a very large and developing site. It offers an impressive assortment of articles, position papers, links, legislative alerts and more.
Association of Disability Advocates
The Association of Disability Advocates exists for only one purpose: to provide information and assistance to individuals with disabilities in the exercise of their civil rights as provided by the Americans with Disabilities Act.
Autism Network International (ANI)
This is an autistic-run self-help and advocacy organization for autistic people.
Axis Disability Rights Website
This site contains some very good articles on inclusion and disability, as well as other progressive resources.
Bobby
Created at the Center for Applied Special Technology (CAST), Bobby is a free web-based service that helps make web pages accessible to people with disabilities. CAST is a non-profit organization whose mission is to expand opportunities for all people–especially those with disabilities–through the innovative uses of computer technology.
Consortium for Citizens with Disabilities (CCD)
CCD is a coalition of national disability organizations working together to advocate for national public policy that ensure the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.
Disability Cool
This web site challenges all the preconceived notions about what it’s like to live with a disability.
Disabilities & Managed Care
This site, developed by the Office of the Assistant Secretary for Planning and Evaluation (APSE), provides information relevant to researchers, policymakers, consumers, and advocates on a wide range of issues associated with managed care and disabilities.
Disability Advocacy Work With Networking (DAWWN)
This site has links to several sites related to disability advocacy, assistance, education, and more.
The Disability Rights Activist
This site brings together much of the information needed to enable anyone interested in the rights of people with disabilities to work for those rights, including tools for activists, action alerts, announcements, and information on issues that affect the lives of people with disabilities, and contains links to several disability rights organizations and publications.
Disability Social History Project
People with disabilities have an exciting and rich history that should be shared with the world. The ways in which disabled people have acted and have been treated and viewed must be examined within the social, political, economic, and religious climates of the times and cultures. This project will present images and information about disabled historical figures and events in an attempt to give an introduction to disability social history.
Disabilities, Opportunities, Internetworking, and Technology (DO-IT)
Located at the University of Washington, the Disabilities Opportunities Internetworking and Technology (DO-IT) program enlists volunteer mentors to help students with disabilities pursue careers in science, engineering and math. DO-IT participants use computers, adaptive technology and the Internet to join an electronic community and tap the program’s mentoring, tutoring and networking services.
Electric Edge: Online Edition of Ragged Edge Magazine
This online edition of Ragged Edge magazine (the successor to Disability Rag) includes the best writing today about the most “ragged issues”–assisted suicide, long-term care, rights, access, and covers the disability experience and what it means to be a crip at the turn of the millenium.
Employment Support Institute
An organization that helps people make better decisions about employment options and policies affecting people with disabilities.
Facilitated Communication Institute
This site offers articles, research summaries and other material relating to facilitated communication (FC).
Family Village: A Global Community of Disability-Related Resources
Family Village is a global community that integrates information, resources, and communication opportunities on the Internet for persons with mental retardation and other disabilities, their families, and those that provide them services and supports.
Family Voices
“We are families from throughout the United States who have children with special health needs. We are also caregivers, professionals, and friends whose lives have been touched by these children and their families. We are a diverse group, representing a wide variety of children, health conditions, families, and communities. Our concern for children brought us together.”
Federation for Children with Special Needs
Organized in 1975 as a coalition of parent groups representing children with a variety of disabilities, the Federation operates a Parent Center which offers a variety of services to parents, parent groups, and others who are concerned with children with special needs.
GLADNET
The Global Applied Disability and Information Network on Employment and Training, better known as GLADNET, brings together research centers, universities, enterprises, government departments, and other groups for the promotion of research as well as the collection, analysis and exchange of information concerning people with disabilities and work.
GnarlyBone News
This online newsletter supports and promotes disability activism with a focus on arts, culture and media. This site includes information on how to subscribe and access past issues and links to other disability activism resources.
Human Services Research Institute (HSRI)
HSRI works to develop support systems for children, adults, and families, and enhances the participation of individuals and their families to shape policy and service practices.
ILRU-DIMENET Independent Living Library
This on-line library includes independent-living related resource materials that have been developed by staff at independent living centers and other organizations involved in the independent living and disability rights movements over the years.
Inclusion Press Home Page
“Inclusion Press is a small press striving to produce readable, accessible, user-friendly books and resources about full inclusion in school, work, and community.”
International Coalition on Abuse & Disability
From the University of Alberta, a valuable resource regarding the issues surrounding abuse and disability.
Institute on Community Inclusion
The Institute for Community Inclusion supports the rights of children and adults with disabilities to participate in all aspects of the community.
Institute on Community Integration
“We believe that persons with developmental disabilities should live as valued members of our communities, receiving the services and supports they need to fully develop their potential.”
Institute on Disability
The Institute is a University Affiliated Program (UAP) located at the University of New Hampshire that promotes full inclusion of people with disabilities in their communities.
Institute on Disability Culture
“People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability.”
International Leadership Forum for Women with Disabilities
This is a continuing information web site. The purpose the forum is to create an international support network with an emphasis on technical assistance for women with disabilities. This web site was created to provide information beyond the 1995 international women’s conference in Beijing, China and to be enhanced with new information as it becomes available over time.
Kids Together
This non-profit organization, co-founded by parents and organized by volunteers, supports the belief that children with disabilities, like all children, have the need to be welcomed, cherished and embraced in our communities. This site is designed to provide helpful information and resources to enhance the quality of life for children and adults with disabilities, and communities as a whole.
Mainstream Magazine
On-line version of the well-known disability magazine.
National Association of Developmental Disabilities Councils (NADDC)
The NADDC promotes national policy which enables individuals with developmental disabilities the opportunity to make choices regarding the quality of their lives and be included in the community.
National Association of Protection and Advocacy Systems (NAPAS)
NAPAS is a national voluntary membership organization for the federally mandated nationwide network of disability rights agencies, protection & advocacy systems (P&As), and client assistance programs (CAPs).
National Association of State Directors of Developmental Disabilities Services, Inc.
This non-profit organization is devoted to expanding and improving public services to individuals with mental retardation and other developmental disabilities.
National Center for the Dissemination of Disability Research (NCDDR)
The NCDDR’s purpose is to enhance the dissemination efforts of NIDRR-funded research projects and to increase the accessibility of research outcomes for the benefit of their consumers, particularly those from minority backgrounds.
National Council on Disability
The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting Americans with disabilities. NCD’s overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature of severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
The National Organization on Disability
The National Organization on Disability promotes the full and equal participation
of America’s men, women and children with disabilities in all aspects of life.
The National Home of Your Own Alliance
The National Home of Your Own Alliance is a partnership between the Federal government and nationally recognized advocates and leaders whose goal is to create housing and support opportunities that people choose and control.
National Parent Network on Disabilities (NPND)
NPND was established to provide a presence and national voice for parents of children, youth, and adults with special needs.
National Rehabilitation Information Center (NARIC)
NARIC is a library and information center on disability and rehabilitation, and collects and disseminates the results of federally funded research projects.
New Mobility Magazine
“Disability is news, art, politics, humor, healing, recreation, travel, show-biz and rehab-biz, and that’s what we do.”
New York SAFE
SAFE is a national coalition of families, consumers and advocates united in an effort to promote the availability of quality educational services to all students, including those with disabilities, in their neighborhood schools. New York SAFE’s web page includes information about all its active chapters and the names and phone numbers of each chapter’s officers and contact people. New York SAFE is looking to provide information to people who are interested in inclusion throughout New York State.
Northamptonshire People First
A self-advocacy organization from the United Kingdom of people with disabilities speaking up for themselves. This site includes links to several other self-advocacy organizations.
Not Dead Yet
Not Dead Yet is a national activist organization which opposes the legalization of physician-assisted suicide and places emphasis on the value of life.
Parent Advocacy Coalition for Educational Rights (PACER) Center
PACER Center is a nonprofit, tax exempt Minnesota statewide organization begun in 1977. PACER’s mission is to improve and expand opportunities that enhance the quality of life for children and young adults with all disabilities–physical, mental, emotional, learning–and their families. PACER now offers 20 major programs, including Parent Training programs, programs for students and schools, and technical assistance to parent centers both regionally and nationally.
The Oaks Group
The Oaks Group is a value based stakeholder organization whose members believe persons with developmental disabilities should be fully included in the mainstream of community life, that children should have the opportunity to grow up in families, and adults should receive the help needed to live as close as possible to the way people without developmental disabilities live.
On A Roll
The only commercial, syndicated radio talk program for the disability community.
Rehabilitation Research and Training Center on Aging with Mental Retardation
Located at the University of Illinois at Chicago, the RRTCAMR’s mission is to promote the independence, productivity, community inclusion and full citizenship of older adults with mental retardation through a coordinated program of research, training, technical assistance and dissemination activities.
Society for Disability Studies
The Society for Disability Studies (SDS) is a nonprofit scientific and educational organization composed of social scientists, scholars in the humanities, disability rights advocates, providers, and agency personnel concerned with people with disabilities.
Solutions@disability.com
Sponsored by Evan Kemp Associates, this site links people with disabilities and chronic health conditions to resources, products and services that promote active, healthy independent living.
TASH (formerly The Association for Persons with Severe Handicaps)
TASH is an international advocacy association of people with disabilities, their family members, other advocates, and people who work in the disability field. TASH believes that no one with a disability should be forced to live, work, or learn in a segregated setting; that all individuals deserve the right to direct their own lives. TASH ‘s mission is to eliminate physical and social obstacles that prevent equity, diversity, and quality of life.
Through the Looking Glass (TLG)
This is a community, non-profit organization which emerged from the disability independent living movement and whose mission has been to create, demonstrate and encourage resources and model early intervention services which are non-pathological and empowering. TLG has pioneered clinical and supportive services, training and research serving families in which one or more members–whether parent or child–has a disability or medical issue.
Training Resource Network (TRN)
Publisher that offers resources on the full inclusion of people with disabilities in their communities, especially on the topics of supported employment, person-centered planning, supported living, and self-determination.
Uppity DisAbility Internet Resources
“Socially progressive site for like minded disAbled people.”
World Institute on Disability (WID)
WID is an international public policy center dedicated to carrying out cutting-edge research on disability issues and overcoming obstacles to independent living.
Thanks to Mair Hall, Perri Harris, Pam Walker, Steve Taylor, David Wetherow, and Bill Coffelt for their comments and suggestions on previous drafts of this article.
The preparation of this article was supported by the Center on Human Policy, School of Education, Syracuse University, through a subcontract with the Research and Training Center on Community Living, University of Minnesota, supported by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133B980047. Members of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position and NIDRR and no endorsement should be inferred. The Center on Human Policy subcontracts with TASH for space in this newsletter.