In our third www.entanglement, we present a mixed bag of trinkets from a wide array of international sites, many of them from the new world. Limitations of space, and of browsing-time, prevent us from expanding beyond these two pages. Please tell Frontline about your own favourite disability websites, so we can include them in future issues!
The website of the International Association for the Scientific Study of Intellectual Disability introduces the worldwide research organisation, its special interest research groups and provides a link to the Journal of Intellectual Disability Research. Within the site one can find organisational and membership information and ‘downloads’ of the IASSID Newsletter.
Inclusion International, one of the largest international non-governmental organisation in the field of disability, represents an international network of nearly 200 member organisations of families, self-advocate and friends of people with intellectual disabilities in 115 countries. Its website includes texts of position papers, public presentations, news and lists of contact organisations.
ILSMH EUROPEAN ASSOCIATION
Our region’s arm of Inclusion International, this website has links to many European associations and to EU bodies.
EUROPEAN DISABILITY FORUM
The EDF website is likely to be the first call for anyone seeking EU and other European intergovernmental information on policy and progress on disability issues. The website includes news, its newsletter and other downloadable documents (including the Madrid Declaration), and a link to the Disability Intergroup of the European Parliament.
The EDF, in cooperation with the Norwegian organisation Funk-Web Ltd, is developing a website to provide information on any issues relating to universal access and information society which impact on disabled people. There is (or soon will be) a mailing list and a discussion forum—for further information, check the edf-feph.org site.
One of the longest-established and most extensive websites for families involved in disability, the Family Village has been developed by the Waisman Center at the University of Wisconsin. The website encompasses information on specific diagnoses, health, education, worship, adaptive products and technology, a bookshop, etc etc.
(‘Don’t confuse the above site with ‘familyvillage.org’, which seems to deal with family history, celebrations and greeting cards!)
INTELLECTUAL DISABILITY INFORMATION SERVICE
Not to be outdone, the Australians also have a similar site to the Family Village site.
TASH (The International Association for Persons with Severe Handicaps) is an international association of people with disabilities, their family members and advocates—at the forefront of disability issues since 1975. The website includes a discussion board for parents and professionals.
The ERIC (Educational Resources Information Center) Clearinghouse on Disabilities and Gifted Education (ERIC EC) is administered by the National Library of Education on behalf of the US Department of Education. The information system is designed to provide ready access to an extensive body of education-related literature and resources on disability and giftedness.
Enablelink is the website of the Canadian Abilities Foundation. It includes articles, lists of Canadian organisations across all disabilities, a message board, news and a chat room—a very extensive website.
EnableLinker is their new electronic newsletter which provides relevant information and resource contacts directly to a member’s email account.
The Roeher Institute, at the York University in Toronto, is Canada’s leading policy-research and development organisation to ‘generate knowledge, information and skills to secure the inclusion, citizenship, human rights and equality of people with intellectual and other disabilities’. Its website includes some documents, a publications catalogue and an information service: ‘if you are looking for a contact person, an organization, articles or books on a particular topic in the disability field, lists of resources, examples of innovative inclusionary practices, annotated bibliographies … we have it, or we can help locate it.’ So, give them a try!
JOSEPH P. KENNEDY JR FOUNDATION
The Kennedy family foundation is identified with the foundation and development of Special Olympics and University Affiliated Programmes (such as the Centre for the Study of Developmental Disabilities at NUI Dublin). Its mission is to provide in the field of intellectual disability. The website has links under four broad headings: research, treatment and education; physical education and recreation; medical ethics; and public awareness and recognition. From these areas, there are links to Special Olympics (www.specialolympics.org) and to the Kennedy Institute of Ethics at Georgetown University (www.georgetown.edu/research/kie), which is the largest university-based group devoted to research and teaching in biomedical and applied ethics.
The website of the Yale New Haven Health Service (Connecticut, USA) includes an interesting ‘self-help clearinghouse’ of disability advocacy groups.
Among the groups listed are:
MUMS (National Parent-to-Parent Network) (www.netnet.net/mums), which includes an index of some 3000 disorders and a database of 17,000 families from 52 countries. MUMS connects parents with support groups and with other families with experience of the same syndrome or condition.
THE NATIONAL FATHERS’ NETWORK, (www.fathersnetwork.org), based in the state of Washington with ninety affiliated groups in the US, Canada and New Zealand. It is a network of ‘men committed to ensuring the optimum health, well-being and education for their children with chronic illness and/or developmental disabilities’
FOUR HEALTH/MEDICAL SEARCH ENGINES
CliniWeb is an index and table of contents to clinical information on the World Wide Web. It now allows search terms to be entered in five different languages (English, German, French, Spanish, Portuguese) and has direct links to MEDLINE searches via the PubMed system at the (US) National Library of Medicine. Three other medical or health-related search engines are:
The Arc, founded in 1950, is the US national organisation of and for people with intellectual disabilities and their families. The Arc has over 140,000 members who are affiliated through some 1000 local chapters throughout the US The Arc website offers free downloading of some of its publications. It gives updates of news items, information on national campaigns, etc. Along with details of resources and local chapters of Arc, the website includes information on the organisation’s sibling support project and the research programmes sponsored by The Arc.
SIBLING SUPPORT PROJECT (SIBSHOPS)
The Sibling Support Project (Sibshops) founded by Donald Meyer of the Children’s Hospital and Medical Centre in Seattle, Washington, maintains a website to assist in starting groups for school-age brothers and sisters of children with special needs. Several Irish groups have followed the Sibshops model (see Frontline
There are two related ‘listservs’—one for adult siblings (sibnet) and one for younger siblings (sibkids).
If, like this author, you tire easily of Internet Jokes, you may want to stop reading now. But, as well as being an inexhaustible source of fact (reliable and sometimes dubious), information, contact and communication, the web can occasionally provide a bit of light relief. There are even those who can find some humour in disability:
MOTHERS FROM HELL 2
On the premise that humour can only help, in any difficult situation, during the ’90s, a group of mothers of children with special needs in Oregon, USA, formed an in-your-face advocacy group called ‘Mothers from Hell’. Their quarterly newsletter, appropriately entitled Brimstone Bulletin, provided sardonic humour and practical information for campaigners for better services for their children, across a fairly broad range of disabilities. When the original group’s energy waned, four mothers from northern Illinois took up the baton, at the end of 1999—hence MFH2. The women say the title of their organisation represents one of the more printable names which parents are referred to by those in a position to administer or deliver services.
‘It can be a difficult concept for the general public to grasp that community inclusion and appropriate services for individuals with disabilities are entitlements in our country [USA]. They are not frilly extras or a second dessert!’