Talking Sense - Volume 43, No 1, Spring 97
Hugh Sasse is visually impaired, and became interested in deafness and deafblindness after changes in attitude towards him when he started using a cane. He felt that he was probably equally clumsy in his well-intentioned approaches to deaf people, and therefore sought out someone to teach him British Sign Language. He has now passed the second year of Stage II BSL, thanks to the hard work and patience of Evan Roberts, his tutor.
There is a lot of talk these days about the information superhighway, Internet and World Wide Web. Some see them as the best thing since sliced bread, others say they are far too technical, and only for people who are more interested in computers than in other people. So what is the truth of the matter, and why should deafblind people be interested in it?
The Internet is a collection of computers, connected together so they can communicate information to each other. That information may be pages of text, programs, or mail messages between individual people. This means it has all the benefits and all the drawbacks of people getting together. Take, for example, electronic mail. When you receive electronic mail you only see the words someone has written. You don’t know what they look like, sometimes you don’t know if they are a man or woman, and you don’t know if they wrote it with a computer that uses large print, braille or even a single switch like Stephen Hawking uses. So this means that people are not put off by a person’s disability and they can get to know the person before they find out. This means that you can get to know a lot of interesting people fairly easily.
Another good thing abut electronic mail is that it can be delivered very fast, sometimes in less than 30 seconds, but because it is mail it doesn’t interrupt you like the telephone. This means you can have a conversation with someone which is more like chatting than a postal correspondence would be, but you take things at your own pace.
Getting in touch
There are mailing lists which you can join, so people who share a common interest can get together and talk about their interests and problems. You send your message to a computer which then sends it out to all the people on the list; they can reply to you privately or to the whole group.
There are lists about almost everything, including a list for deafblind people to get together and pass information, experiences, frustrations and good humour back and forth - and it’s friendlier than many groups are. It is open to anyone who is deafblind or related to deafblind people, or who works with them or just cares about things that affect deafblind people. We have discussed mobility problems, communication problems, the different canes people use around the world, things that can go wrong when you are with a guide/interpreter (for example, they write out the cheque for a deafblind person, and sign it themselves! or sign to a blind person and speak to a deaf person, and other such things that show it is going to be one of those days!). We have discussed the different alerting devices you can get, what things people use to communicate with their computer, and a collection of airport horror stories.
The World Wide Web, often referred to as WWW, is a collection of documents on different computers all over the world. These documents refer to each other in a similar way to entries in an encyclopaedia, but instead of saying "See also..." the relevant words are highlighted in some way. They may show up in a different colour, in bolder text, or your cursor on your brailled display may move to the next such word when you press a key. These references are called links, and if you choose such a link by pressing a key on your computer the document it points to (which can be anywhere in the world) is called up, so you can travel along the links and explore. However this can take some time, and you may not find what you want. (Someone described the WWW as like a library which had been vandalised, with all the pages of the books all over the floor; the information was still there but hard to find.) This task has been made easier by programs that call up the documents, follow the links in them, and index the pages. There are a number of such "search engines" which people can query to find the WWW pages they may be interested in. Using these I have been able to find a certain amount of information relevant to deafblind people.
There are plans to put the Perkins School, Boston, USA library material on the internet and world wide web. This is the largest library of articles and books in the world on visual impairment, a large number of which relate to deafblindness.
Link with resources around the world
I have built up a deafblindness WWW resource that has links to various pages around the world describing such things as a robotic fingerspelling hand, which allows a deafblind person to read the output of a computer in American (one-handed) fingerspelling, a synthetic tadoma system which stimulates the lip motion and breath patterns and throat vibrations of speech so a deafblind person can read them, and details about Usher syndrome. There is a small section where I link to pages about conferences on deafblindness. I have a list of periodicals people can obtain, including Deafblind Education, a growing list of equipment, and a bibliography. I have started work on a list of service providers around the world, although this has huge gaps in it at present. I know that Sense will be setting up its own web page in the near future, and I shall be linked to it as soon as it is available. I would be grateful for any further information that would make this resource more useful. I should add that this site is extremely unofficial, and in no way represents the opinions of the university where it is situated. I have tried to minimise the space it takes up so there will not be demands to remove it, but unfortunately that could happen, as it is not relevant to the work of the research group.
There is a way to access the WWW by electronic mail that does not give access to the search mechanisms. This, and WWW access by telnet (connecting to a machine and logging in on a special account) are mentioned on my deafblindness page.
It is difficult in a publication such as this to describe how to get started on the internet. You need a computer of some sort and a modem, or an account on a computer already connected (such as at a university). If your machine is not already connected you will need a connection from an "internet service provider", who will charge you depending on how much you want from them. For example, you may want to create your own WWW page or have one made for you. In the UK there are many different providers, and it is fairly hard to choose between them. Although there are a lot of books on the topic, I am unable to say which are in braille or Moon, but I gather the number is increasing and I have heard there are some being produced on disk. The internet resources I have referred to are:
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The DEAFBLIND list: Send a message to listserv@tr.wosc.osshe.edu with a message body of SUB DEAFBLIND<your full name> If you send the message INFO REFCARD to the listserv you can find out about the digest mode and other features. The address of the list itself is deafblind@tr.wosc.osshe.edu so that is where messages for all the people on the list should be sent.
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A Deafblindness WWW resource. This is at: http://www.eng.dmu.ac.uk/hgs/deafblind send an email to agora@www.eng.dmu.ac.uk with the word help in the body of the message and you will get a reply that describes how to use the system. You will be restricted to how many requests you can make per fortnight, depending on your location, but you can get round this by running the software locally, which will improve the response time and reduce the load on your system.
Hugh Sasse
